A Day In The Life.....Chronic Pain

Co-written by Amy Nora Chronic Pain... is just that. It’s chronic, meaning it’s something we live with ALL the time. It is not the same as stubbing a toe or knocking your knee on the corner of the table.  There is no cursing or exclamation of words and a few minutes later life is perfectly normal and you are moving on.  Nor is it like breaking a bone, wearing a cast and being done with the pain and annoyance 6 months later. Chronic pain forces you to live differently.  Life becomes methodical, more deliberate in the actions we take, and how we live our lives.  This includes the simple things like getting out of bed, going out with friends, cleaning, or trying to cook a meal.  You live you life in pain; therefore, you come to accept various levels of pain as normal.  This does not mean that you would constantly rate your pain a 10/10, you may rate your pain as a 2/10.  However, you had to stand and make a sandwich so now that has spiked to a 7/10.  This is a fight fought daily by millions of Americans with degenerative diseases or chronic medical conditions.

I wanted to give you all a look into a day in life of living with chronic pain. But I decided to go about it a little differently. My friend and frequent contributor Amy Nora and I will both be sharing our views of what like living with chronic pain is like. As living with chronic pain can look very different for different people.

Amber's Story

I feel that there is so much negativity in news about pain and pain medication these days with all the issues with the changes in the rules and regulations with narcotic prescriptions. There are people killing themselves because they can no longer receive their meds. Others are being fired from their Pain Management Doctors because they don't take their pain meds frequently enough. We have all heard the stories. But I don't want to focus on THAT today. I want to bring light to what a real day of someone with chronic pain is like. I want to talk about what a day with multiple conditions that cause chronic pain can be like. I think many people have a stigma in their mind that people with chronic pain take their pain meds and may have some pain everyday, but most of their day is spent doing what they want with no big issues. Just so we are all on the same page here's a point of reference: besides taking pain medication I also use a combination of heat, hot showers, massage, muscle rub and yoga to treat my pain. I do suffer from multiple chronic illnesses that cause chronic pain, I live daily with Lupus, Fibromyalgia, Debilitating Migraines, Endometriosis, Interstitial Cystitis as well as undiagnosed chronic back, hip and sciatic pain.

For most people when the alarm goes off or they wake up, they probably start going through the day ahead in their mind. As far as what they have planned, what's scheduled, what they are making for dinner etc. For me and those with chronic pain the first thing I do when I wake up is lay in bed for about 15 minutes let my body wake up so I can assess my pain. I have to lay there for a little while to let my body connect to my brain so I can really take account of how I am feeling.  I generally start at my head and work down. This morning for example, I started with my head, and the pain was like a 2/10. Continued down to my throat, neck and glands because I have been fighting a cold/sinus infection, that was like a 2/10. Then down to my shoulders, elbows and hands. Left elbow was a 4/10, still not sure what that was about, but it has been happening a lot lately. My hands, about a 4/10 as well. So I start doing some stretches to see if they are just stiff or if they are going to hurt all day. They seem to be stiff and the pain seems to ease with stretching, so that is a relief. Down to my belly, cramps are like a 6/10 as endometriosis causes MEGA cramps when its time for your cycle. My bladder is probably an 8/10, because I didn't wake up all night and it feels like it is ready to explode. My low back is a 6/10 as is my left hip, and for the first time this week I didn't wake up with any sciatic pain or pain in my left calf. Which has been very painful everyday this week. Overall, I would say my pain would be about a 6/10 this morning. So now that I have assessed the pain that I woke up with, now I have to decide what I want to do about. Do I go ahead and take something before getting out of bed, or do I wait and see how things go as the morning progresses? That is sadly the question I address each and every morning after I wake up.

Generally, my rule of thumb in the morning is that if my overall pain is over a 5/10, I go ahead and take something for the pain. I have learned that if I don't the day is NOT going to get better. And I will most likely not be able to get the things on my to-do list done. Or at least not until later in the day. So this morning that is exactly what I did, I took something for pain got out of bed and did my morning stretches that allow me to be able to move in the morning.  Without those stretches, thanks to the fibromyalgia I would not be able to move first thing in the morning.  I won't bore you with the exact play by play of my day. But at each step of the way I have to decide if I can complete this task or if I should wait and attempt it later. This morning after getting dressed and having breakfast, my first task on my to-do list was cleaning my bathroom, I knew I didn't feel like it but it can only be put off for so long. For most able-bodied people they could probably go in and get it done all in one fail swoop. For me however, it takes several steps. Due to my pain and fatigue, any multi-step project will almost always require several breaks. Just to clean my small bathroom this morning I had to stop and rest FOUR TIMES!!!! And it took me over FORTY FIVE MINUTES. Even with the breaks, I still had to lay down with my heating pad on my back and abdomen for about 30 minutes before I could go on to my next task.

I continued on with my day the same way as above. I vacuumed and then had to rest and use the heating pad. Then I did some laundry and had to rest. After eating lunch the pain has escalated again to about a 7/10 so I had to quit what I was doing and lay down. Completing simple tasks is no longer simple. It has to be well thought out and planned. That is generally how it goes for most people with chronic pain/chronic conditions. I can no longer just complete a task without resting or taking several breaks. Things that used to be simple and easy are no longer so easy. Everything that is done has to be well thought out.

I miss my time out with friends and family. But a night out or even time at home with friends or family for dinner and a movie requires major planning. Over the years I have learned that if I want to spend a day out of the house no matter what I am doing I better prepare. I need to make sure I rest all day the day before, and maybe two days before. And I know that I will most likely be in bed and doing nothing for several days after. For what seems like a normal day out of the house shopping or an evening out to dinner and a movie to an able bodied person is much different to someone with chronic pain. For example, last week, my little sister played in her last competitive softball tournament. And I just simply wasn't going to miss it. Sadly, I knew I was going to pay for it because I didn't feel good going in and it was 95 that day. (People with lupus simply do not do well in the sun.) So I planned ahead and took it easy the day before, and stayed in bed till the last possible minute the morning of, got dressed, and got in the car for the 45 minute trip. I was already hurting (at about an 7/10) by the time we got out of the car, and at that point we still had about 15 minutes to go before the 75 minute game would start. I had taken my pain medication before I had left the house but it wasn't doing much to relieve the pain. I made it through the game, a quick lunch after the game with the family and the 45 min drive home. After my shower, a COLD shower, I crashed. And I certainly paid for it the next couple of days. Everything you can imagine hurt, my back and hip from sitting, my head from the heat. And just about every joint you can name. I really was hardly able to get out of bed the next day because the pain was so severe. That being said I wouldn't have changed it for the world. I got to see my sister play one last time. I would have done it 100 times over just to be there especially knowing how happy it made her that I was there to see her play.

If my pain is tolerable and I actually get out of the house like I talked about above when I attended my sisters game. Usually as soon as I get out of the house I am counting down the time until I can get back home to my bed and my heating pad. Generally I can’t focus on whatever I am doing because my pain is such a point of focus. I do enjoy getting out of the house but I can’t help but think about how much I am going to pay for leaving the house. So sometimes we have to pay for the good things in life. It shouldn’t be that way but it just is. We shouldn’t have to deal with all we do, but we do and we learn how to deal with the hand we were given.

Amy's Story

I had my first experience being treated as a drug seeker this week, which I will tell you about in just a second. But I first want to give you a little backstory. Only a few months ago my family moved to a new state leaving behind the doctors who had treated me for many years. Knowing there has been so many issues with pain and pain medication, on my first visit I brought all of my medical records with me. In the state I moved from, the doctor treating the source of your pain would be the one that prescribed your pain meds.   I discovered that my new Rheumatologist does not write pain meds.  I take a rather mild medication; however, he preferred that my PCP write for anything related to pain.  I use a combination of physical therapies, yoga, tai chi, breathing exercises, rest, heat, massage, and tears to handle and tolerate pain.  Meds were a last resort for me.  In fact, this was a decision that was not taken lightly, and very seriously discussed with my previous doctor.  When I went to my new PCP to get the medication, I was promptly given a long lecture on how doctors are monitored and restricted, and how they are not allowed to write too many of these prescriptions.  They did not look at the scanned records that are in their system, they did not call my rheumatologist.  I was lectured.  I was informed that I had to go to a second doctor to get pain medication, because that practice encouraged doctor shopping.  Something the medical system here should know and discourage; however, this was their policy so I was being forced into this practice not by my choice but by their policy.  A prescription was finally sent to the pharmacy which I picked up the next day; only I discovered the prescription was for THREE DAYS of the medication.  I do not take the max prescribed, I do the best I can because there are no therapies left on the market for us to try.  We are at the end of the proverbial rope.  Asking for help once in awhile should not result in being treated like someone with a contagion that will cause deadly harm.  I feel like physicians are pushing patients into medical marijuana (legal in my state) and can see why patients feel forced to seek illegal options.  When you deal with chronic pain, you learn quickly what things will exacerbate it, what things you do that will make you pay a little bit of a higher price, and things you can do to help here or there.  I have Lupus, Rheumatoid Arthritis, Sjogren's Syndrome, debilitating Migraines, Epilepsy, and Fibro.

If I am lucky, I wake up and think that my eyes might open properly the first time.  My dog is a service dog and has been trained to help gently wake me.  Part of this is because of pain, but also if I am jarred awake it is a promise of a day with a horrible migraine.  I begin taking stock of what is alive or asleep or wishing it were dead on my body.  One thing with RA is morning stiffness, so often you don't allow you initial impression of the day define you.  I roll out of bed and hope I don't actually fall.  The first 15 minutes of the day moving is generally agony; an 8/10 because your muscles and joints have no idea if they even want to move.  This does not include all of the other fun stuff like cognitive dysfunction (you can't think clearly) or your eyes don't actually focus (thank you Sjogren's).  After 15 minutes, sometimes 30 minutes, you have an idea of where you are going to hurt the worst for the day and what you will be dealing with.  Normally, I know that my knees, hips, and lower back will always be a 5/10 and that is just what it is.  If I having a migraine, I automatically medicate for that, and if the rest of my joints are above of 6/10 I will take medication to help with that.  This is when two things hit me simultaneously.  My need for coffee or tea and also what will I be able to do today?  Is it a stuck in bed day?  Maybe I can do a couple things, but I will have to depend on my cane?  Oh, it is a good day.  I can walk around and get two or three things done and just rest in between and after.

I had one day recently when I got really ambitious.  I wanted to get sheets, blankets, and clothes washed and dried in the same day.  That morning my pain started at around a 5.5/10.  My energy was pretty decent, I had a plan of action in place and life was good.  You become a bit of a master planner with chronic pain and any chronic illness.  I have learned that I can have the best plan, and it will go straight down the toilet.  I started with the regular clothes.  Just the act of getting them moved from the washer to the dryer, using my laundry aid, escalated pain to an 8 and delayed me getting to my next load for an hour because my legs and back gave out and I was unable to tolerate the simplest actions required to put a load of laundry in.  Sadly, this was with pain medication on board.  My goal was three loads of laundry for the day.  To an able bodied person, that may seem like nothing, for me to complete that in one day would have made me feel like I had just climbed Mt. Kilimanjaro.  When you have a chronic illness that no longer is how life happens.

For me, time with friends is one of the most beautiful and precious things.  It also is the one thing you lose that people don't understand about you.  When first diagnosed I thought that I could just power through, now I have learned the price I pay.  Last week I went to the movies with my sister and niece.  I wanted to see Mamma Mia 2, they did too quite frankly.  It was girls night.  I had to rest 2 days prior.  The night I went I almost collapsed going into the theatre, and I did collapse coming out.  I started the night fatigued and about a 5/10; before we left I had a slight moment where I wanted to sit down and sleep for a month but I was not missing.  By the time I got home I was about a 9/10.  I have been flaring, which in our world means additional pain, swollen and stiff joints, and fatigue since.   I would not trade that fun night though.  There is a price you pay for all of your time.  I know with this post, I am not asking for sympathy.  But before you make a judgement, pause and maybe try and step into another's shoes for just a moment.

Even our families and closest friends don’t always understand. Chronic pain is hard for anyone to understand because it can’t be seen. When you look at us we don’t look any different from the next women. Unless you you see us limping, walking with a cane or rubbing a sore spot you wouldn’t know we were hurting. They try to understand, and at first they do really well. But even the closest of friends or family start to get frustrated after repeated cancellations. They think back to the time they sprained their ankle or tweaked their knee, and the pain was gone in a couple weeks and they don’t understand why “a little pain makes life so hard!”

What Amy and I shared above is simply a small glimpse into the life of someone who has chronic pain. Someone who has to carefully plan each and every task they do on a daily basis. No on will never be able to explain to what it feels like to feel like your body is no longer your own. Your head and heart want to do one thing but your body says NO. No one will ever be able to explain to you how hard it is when you have to turn down your best friend for the 9th time, simply because the pain is to unbearable. No one can ever explain what it feels like to be told by the people who you are closest to to "Just take some Tylenol, and a nap, and you will be fine!" No one will ever be able to tell you what it feels like EVERY SINGLE TIME you go to a doctors office and they see that you take pain medication, and you can see their thoughts about you change for the worse. No one will ever be able to tell you how it feels to have someone tell you to "Just exercise and lose some weight, and you will feel better!" All that being said, until you have lived and walked in our shoes please try to keep your judgments about us until you meet us, and really get to know us. Yes, my pain impacts almost all of my daily life, but it DOES NOT make me who I am.

With Love,

Amber & Amy

The Day I was Treated Like A Drug Seeker

* This is about my personal experience not a topic to be debated about the use of narcotics. I went to my local ER last week because I had been dealing with a migraine for almost two weeks. Sadly, is not uncommon for me to end up in the ER for a migraine. In fact that usually happens at least a handful of times every year. Unfortunately I generally end up being admitted for said migraine at least a couple times a year. So I know how things work in this ER and Hospital. Especially since I actually worked as an RN in this hospital for 9 years. But this time was different.  I had the worst experience I have ever had in that hospital. I have NEVER been treated as poorly by as many medical professionals in such a short time span as I did that visit. And that's saying something because over the last five years I have been there MANY times and have been cared for by MANY nurses, physicians and other providers. Due to the fact that I am no stranger to the hospital, and the fact that I have MULTIPLE invisible illnesses I am not unfamiliar with being looked at like I am drug seeker.  But this visit took that to a WHOLE NEW LEVEL.

I had barely made it into the room in the Emergency Room when this male who I assumed was a nurse came in and without telling me who he was or anything his first words were "I see you take X & Y at home for pain did you try either of those?" Okay, fair question. I calmly explained that they can cause rebound headaches so I don't always try them for headaches. He proceeded to tell me that I wasn't going to be receiving any narcotics while I was in the ER that day.  He then went on to ask me what has worked on my migraines in the past. My mom answered that question as I was not totally able to think straight after that long with a migraine. She told him that a low dose of Ketamine has worked for me really well for me in the last. Continuing on to tell him the last time I received it the nurse had never heard of it being used for migraines either so the Doctor took him aside and showed him literature on the studies that have been done. Those studies show that Ketamine at a low dose works well for migraines. And before she finished her sentence the nurse shot that down and said there was "NO WAY" I would be getting that today because its a sedative and not for migraines.. At this point I didn't know what to even think. Honestly, I was ready to leave and say forget it.  But that wasn't the last run in with that nurse I would have before I was admitted.

I had a port placed three years ago due to the fact that I don't have good veins anyway and then I took years of high dose steroids which killed the veins I did have.  So I always request that my port be accessed. He REFUSED. He said I had great veins and placed a peripheral.  I wasn't in any condition to argue. Because he was so asinine I ended up with five sticks which should have been one.  But I did enjoy when the ER doctor put him in his place and let him know that he would in fact be giving me Ketamine for my migraine. HA!!!

I was really hoping that the Ketamine would work like it had in the past and I would be able to go home. But it didn't....... So they called a hospitalist to come in and see me so I could be admitted to the hospital.  As he walks in the room he introduces himself and announces "I DO NOT GIVE NARCOTICS FOR HEADACHES, JUST SO YOU KNOW! Again, that word had not come out of my mouth since I arrived. He like the nurse was making an assumption of why I was there based on what he saw on the chart, without actually seeing or talking to the person behind the medical record. I really hadn't even thought about asking for any narcotics because I know that it can actually make a headache worse. He asks me a few questions and says he won't be admitting me its a neurology issues, and leaves. The nurse I loved so much comes back a few minutes later to tell me that they were taking me upstairs. When I asked who the admitting doctor was they told me it was Dr. Pleasant Pants that I had just seen. I was less than thrilled.

Once I was taken upstairs and settled into my room, a neurology doctor who I didn't know showed up to see me. And AGAIN for the THIRD time in less than three hours, this doctor identifies herself and before I can say anything she says "I DO NOT GIVE NARCOTICS FOR MIGRAINES, JUST SO YOU KNOW."  Yet again I had never asked for an narcotics or even actually thought about asking for one.  Like the two before her she was also making an assumption about why I was there and what I wanted before even seeing me. By this point in the day I had nothing to say I was so blown away that I just looked at her. I didn't have anything to say I just agreed with her plan of care and went on with it. At that point I would have tried anything to get the headache to go away. And anything I would have said in that moment to this doctor would not have been nice or helped my case in any way.

Sadly, during my entire four day stay in the hospital there was only one nurse that would actually give me my home pain meds. In fact she actually brought them to me without me even having to ask for them. The other nurses didn't think I needed them because I was getting "the migraine cocktail!" And that is true, I didn't need my home meds for the headache, I needed them for the rest of my body. All the other parts that hurt besides my head.

I know, everyone is all in an uproar by the new changes that may be coming with narcotics and the doctors are being more careful with what they prescribe and to who. But anyone could look at my record if they really took the time and see that there is more than enough reason for one or even both of the medications I take. And if they looked more closely they would also see that my scripts last me on average 45 days rather than 30 because I don't take them as often as they are prescribed. If they took time to look further than the med list they would see a person. A person who believe it or doesn't really care for the way pain medicine makes me feel. I don't enjoy being nauseated and itchy when I am already itchy all the time from my illness.

It just frustrates me to no end that the people in the world who have abused the drugs have totally messed things up for those of us who need them. Because people choose to take narcotics to get high it is becoming increasingly hard to get pain meds for people who really truly need them. Many of us need something to be able to get out of bed in the morning. Or to take a shower, or to do any daily task. But because of those idiots many are being refused. And sadly there have been a number of suicides in the chronic illness community due to the fact that they were refused the pain meds they relied on.

I have not shared this earlier because it took me awhile to process it. To really think about how it made me feel and how I could share this best to get my point across without sounding like I was whining. I just wish medical providers would look further than a med list. Or even the list of diagnoses. Behind those things there are people, people who never asked for these life altering diseases, people who didn't ever do anything to deserve the fact that we are living in chronic pain. Many of us who really need the pain meds would not be able to function or have any semblance of a normal life. And if it comes to the point when none of us have access to those meds a lot of us wont be able to get out of bed, much less work and be a productive member of society. Many of us would gladly trade every last pain pill for the ability to go back to the life we had before we got sick. If i could turn in my pain meds and magically be healed i would be the first in line. Sadly, that doesn't happen! I can't speak for all of the people with chronic pain due to a chronic illness, but personally I have tried all other methods of pain relief. I have tried meditation, acupuncture, massage, physical therapy, water therapy, over the counter meds, pain rubs, heat, ice. You name it, I have probably tried and it just doesn't work the same way that pain medicine does.

At this point the only thing I think we can really do is to start writing letters. Letters to those who represent us in our local, state and federal government.  I am not a political person and I normally don't include things like this in my blog but I think this is all we have left. I think its time for a CALL TO ACTION for all of us who suffer from chronic pain. We have to be proactive and start writing letters, telling our stories and getting them out there. If we don't share them, who will ever know what we really live through on a daily basis. They need to know that we are being treated the same as drug seekers, the same as drug addicts or not being treated at all. They need to know that we didn't choose this life but it has happened and we are doing out best to make the best out of the hand we were dealt and having out pain medications taken away is not the way to do it.

I know in the past people have probably assumed I was drug seeking because when you present to the ER, for a migraine or back pain or a lupus flare that causes pain all over the body they can't see it. They don't see our pain on a lab test or an X-ray so they just assume that we are just there for the meds.  When it reality we just want to do whatever it takes to get the pain away even if that's just a shot of steroid. Healthcare workers have sadly become so jaded by the "opioid crisis" that they can't see past it. I know from many years of experience as a nurse that it is easy to assume that drug seeking is occurring when someone asks for pain medicine without asking any further questions.  We have to start advocating for ourselves, as I always say if we don't advocate for ourselves no one else will.  Sadly, I did not do a good job of doing that this time around  because I felt so bad. But I wont stand to be treated like this again.

I am lucky to have a multiple people who act as advocates for me for, will stand up and fight for me when I can't. My Mom has become my biggest advocate as she has sat in the ER waiting rooms and at my bedside hours in end without complaint. Just to make sure that i get what I need. Many times she is my voice when I can't speak up for myself. If you are in a situation where you don't feel as though you can stand up for yourself take someone with you. If you can, take a family member or a friend with you to the ER or to the Dr to help make sure you get the treatment and care that deserve.

If you need any help writing letters to your representatives or finding who your representatives are please let me know and I will be more than happy to help you however I can

Please take the time to also share this story in your communities. We have to get our stories out there, we have to find a way to be heard.

With Love,

Amber

The Honest Truth About Our Periods

Lets just really honest today! Periods...... they are not the favorite time of ANY ladies month. But even less so for those who have endometriosis. Men will never be able to truly understand what its like to deal with a periods every 28 days or how often you might be "lucky" enough to get to deal with these awesome body function. We don't have to talk about the obvious, the bleeding. But its a major part of why we all love them, oh so much. Then we are lucky enough to also get to deal with irrational mood swings, cramps that are not easily explained to men or others who don't have to deal with those, and the bloating. Then there is the insatiable hunger. And of course we couldn't want veggies, and fruits and lots of protiens. NO most women want anything sweet, salty or fried!!!!! Which does NOTHING for the ache that comes along with eating crap food.  Okay, you may be thinking that I am going overboard. But no...... I think most women would agree that, that one week of the month we would rather not deal with is far from pleasant and is oftentimes just awful.

NO, I am not here to write an ENTIRE blog post on how bad a menstrual period is. Because chances are those of you, that read past that first paragraph are women. Or men in committed relationships with a women so they know the ins and outs as well. What I really want to talk about is what we can do to make that week of every month a little easier.  So I went to my friend Mr. Google to help me with information for this post. Below you will find my (and others) recommendations for how to make that wonderful week a little easier for everyone involved.

1. Exercise With Lighter Activities -

If you are anything like me when you read this the first thing you said was "ARE YOU CRAZY, HOW WILL EXERCISE HELP?" But that may be my common response to several things LOL. In all seriousness a lady can increase blood flow which will help cut down on the cramps. So if you decide to do this you need to go light. Do easy exercises like yoga, or stretching or walking, some encourage swimming but that sounds like a disaster to me!!!!

2. Hug A Heating Pad

This is and always has been my go to. For any abdominal or back pain I have during my period. I find a good heating pad and don't let it out of my site for the whole week. The heat can actually sooth your muscles which in turn eases your cramping and overall discomfort

3. Its Important to Drink Plenty of Water and Stay Hydrated

I know some of you are thinking "No way, I am already holding on to three pounds of water weight, why would I choose to drink more water?"  I know, it sounds crazy but the more water you intake, the easier it will be to eliminate the extra water building up in your body. We should always try to drink more water, because it really is good for out bodies even when we think it sounds crazy. No matter if we are on our cycle or not we should all really try to drink 10-8ounce glasses of water a day.

4. Avoid Caffeine

Caffeine has truly become an issue for many people around the world. But for women its important to remember that caffeine actually makes you hold on to water weight, and definetley contributes to that achjy, crampy, bloated feeling we often feel during out period.

5. Eat The Good-For-You Food

Even though the only things you want are chocolate, ice cream and french fries (okay, maybe that is just me), we should all really try to eat more fresh fruit and green veggies. By eating enough of the good stuff it could potentially help to steer you away from the bad choices. You could try snacking on carrots with hummus, apples with peanut butter (which will give you the sweet and the crunch you make be looking for,) or blend up a smoothing with good fruits.

6. Try To Stay On Top Of Your Sleep

We all need 7-8 hours of good sleep all the time. That is especially important for teens who are on their periods, They really need eight to nine hours of sleep per night. Getting enough sleep will help you wake up feeling refreshed and rejuvenated.

7. Take Notes

Being prepared is your best defense when it comes to that time of the month.You should start keeping a record of your period each month. You can do this on paper or now with just about everyone having smart phones there are great apps that you can get that help you keep track of not only the dates of your cycle but also the symptoms, and how heavy they flow is. After a few months of doing this you will be able to see a pattern and can talk to your doctor if needed.

8. Use Period Protection That Lets You Stay Active

These days there are pads and tampons for every shape and size. Even special items made who are more active. And completely natural options. But what it comes down to is efficiency and comfort. It doesn't matter what the women in your family has used for 3 generations, or even what your best friend uses. Don't be afraid to jump out of the comfort box and do some research on products that are out there. You honestly just need something that makes you feel less self conscious and takes care of what it is supposed to.  And be prepared to be able to change said pad or tampon every 4-8 hours. This is especially important for the younger girls in our life who may not have been told the risks of Toxic Shock Syndrome.

Since we are really being open and honest lets talk about a couple of other things. One being at what point should you contact your doctor about your cycle.

The symptoms that you need to be talking to your doctor about quickly:

  • heavy bleeding
  • extended bleeding (more than 7 days)
  • bleeding after sex
  • spotting
  • excessive clotting during periods
  • abdominal pain
  • any odorous discharge
  • excess hair growth on face
  • unexplained weight gain

Likely Causes of an Irregular Period

Many issues can cause irregular periods, things like changes in the bodies production of estrogen and progesterone can alter the normal pattern of a ladies cycle.  This is why young girls going into puberty and women approaching menopause often experience irregular periods.

Other common causes of irregular periods include:

  • Having an IUD
  • Changing birth control pills or using certain medications
  • Too much exercise
  • Polycystic Ovarian Syndrome (PCOS)
  • Being Pregnant or Breastfeeding
  • Stress
  • Overactive Thyroid (Hyperthyroid) or underactive thyroid (hypothyroid)
  • Thickening of or polyps on the uterine lining
  • Uterine Fibroids
  • Endometriosis

The hormone estrogen thickens the uterine lining before ovulation, so when estrogen levels become unbalanced the uterine lining sheds irregularly. This may result in heavy bleeding.

The conditions Endometriosis can also cause extreme cramps, very heavy bleeding, pain with intercourse and pain in the rectal area.

If you have any of the above issues or just want to talk to your doctor make an appt to do so. Most of the issues that cause irregular periods can be treated in one way or another.

With Love,

Amber

Confessions of the Chronically Ill

Co-Written by myself & contributor Amy Nora When you have a chronic illness like Lupus there are going to be some thing's that you hold true. Things that you don't share with most people, things that you know most people don't want to know, or simply wouldn't understand. Things that you feel people who aren't sick would never understand. So as we have come to an end of the 2018 Lupus Awareness Month, I want to share some confessions from the chronically ill. Remember they might not be true for all chronically ill. This is based of the experiences/issues we have and deal with.

1. I often feel guilty --- Some of you are probably wondering why we would feel guilty. Well, there are a MILLION different reasons. We may feel guilty that we can't contribute to our families like we want to. Or we might feel guilty because we feel like we are a burden to our family and friends. Or because of the constants needs or help for basic daily life we need to ask of others. There are a million reasons why we might feel guilty.

2. I feel like I'm alone --- Again you may be wondering how we could feel alone when we have friends and family all around us. Well, that's simple, we may have people around us but they don't know the struggles we face everyday. So it's not so much that we may feel alone physically, it's more mentally and emotionally. Because most family and friends don't know what it's like to live our lives, and they can never truly understand our world.  We try and protect them from what we go through, because as much as what we deal with, we also know that they feel a stress.  This can intensify a lonliness.  It creates a vicious cycle.

3. I often experience some level of anxiety and depression --- There are so many reasons we may feel this way. We could be anxious because we aren't feeling well and there's nothing we can do about. Or because there is something coming up that we aren't sure we have the energy or stamina for. On the other hand we could be depressed because we had to cancel ANOTHER date with a friend or our spouse. We might also be down because we feel terrible and have for awhile. That takes a toll on your mental health.  The very nature of having a chronic illness creates a constant mental battle that is medically known to alter brain chemistry.

4. I am almost always in pain --- Even though you know I have pain medicine and have taken it. I am generally always hurting somewhere. NO, it's not searing, burning level 10 pain. It's more like a constant nagging annoying pain. Like a level 3 Pain. But it's usually constant. And chances are I won't say a word, and will often say "I'm fine" when asked.  Just remember, your fine and my fine are not the same.  Sometime ask, “No, how are you really doing today?  I want to know.  What can I do that would help you?”  When in pain and tired, these words are a balm physically and mentally.

5. Every good day is truly a gift ---Sadly, we don't always have a LOT of GOOD days. So when I do I may need help remembering that this day is a gift and I should take full advantage of it.  Do not make me feel guilty for having a good day, do not take my joy for this good day.  I may have to pay for this good day for a week to come or a few days in bed or on the couch with pain, fatigue, or any combo of problems including infections.

6. I don't look sick --- Nine Times out of ten you wouldn't know by looking at us that we are sick. That our bodies are constantly at war with itself. We just look like average people on the outside, but inside we may be a disaster. Going out in public knowing that others can't see our illness can lead to feeling alone, or being anxious.

7. I am often afraid to work, make plans or have a life --- I know this one sounds silly. Why would anyone be afraid of those things? It's simply because we never know what our body is going to do. I may feel fine at 8am, but at 11am I may feel like I was hit by a bus. Our bodies change so quickly and often without reason. So we never know if we make a dinner plan for next Wednesday how we will feel.  Every plan is made with the caveat of, “If I feel okay,” and buying tickets for an event is a terrifying exercise in wasting money and letting friends down.

8. Not all doctors understand --- Sadly, this is the case a lot of the time. I don't know how many times I've seen a doctor who's not my own and they know nothing about Lupus or how it impacts a person's life, body & health.  The American Medical Association even acknowledges that auto-immune diseases are one of the most under taught areas in medical school because of their complexity.  More times then not, as the patient you are educating the provider when you are already ill.  At best, they believe you and do some additional research quickly to understand.  At the worst, they do not listen and make medical decisions that do not help you are your condition because they do not understand fully how Lupus impacts you.  Remember, Lupus effects each patient differently.This is just a few confessions of the chronically ill. I could probably write a book on things we feel but never share. We don't want pity so we often keep our issues to ourselves. We don't want to be judged or looked down upon because of our health.  What we do want is for people to understand.  Just this week, Toni Braxton tweeted a picture of herself, and people were quick to make a judgement that she had plastic surgery.  No, she is on steroids for her Lupus.  Know Lupus.  Know that we deal with our body attacking us on a daily basis, and that no two cases are the same.  Know that we keep our secrets to protect you, but know those come at a cost.  So today…. We let a few cats out of the bag.

With Love,

Amber & Amy

The Truth Behind the Gluten Free Diet Part 2

Continuing on from Part 1 we will now take a look at what researchers have found more recently in regards to The gluten diet. We will also be looking at the potential benefits and potential risks of eating a diet low in gluten. I will also give you some examples of good gluten-free foods and the kinds of foods you should avoid. In the early 2000's Dr. Fasano continued the study of celiac disease, and the gluten-free diet. He also completed a large study that found the prevalence of celiac disease in the US to be about 1%. Which was actually 10 times higher that what researchers in the US before this study! Fasano's research was published in the Journal JAMA International Medicine 2003.

After the spotlight was placed on Celiacs Disease in the US, many more studies were done and published, regarding the gluten sensitivity in Americans. Some research began to suggest that a gluten free diet might actually be beneficial to people with other health conditions, not just Celiacs. There have also been research done that showed that there could potentially be a link between gluten and schizophrenia, or gluten and autism.

"There is a possibility that some groups of individuals with other chronic inflammatory conditions, including autoimmune diseases like diabetes or multiple sclerosis, of course autism ... and schizophrenia ... there could be a subgroup of these individuals that could benefit from embracing a gluten-free diet," Fasano said.

As research on this issue has continued, links between gluten-free diets and improvements of various other symptoms and disorders, has been found.

Around 2010 celebrities started to speak out about gluten-free diets. A popular singer and actress put out information on social media that she had lost a significant amount of weight by removing gluten and lactose from her diet, she did also say that she has allergies to gluten and lactose. But not everyone heard it chose to listen that she cut it out due to allergies and only saw that when she did this she lost weight. Around this same time, multiple food manufacturing companies began working to expand products that were gluten-free to keep interest in the products among the groups that were eating gluten-free diets. At this time rules for defining gluten-free products changed and would now require that food labeled as gluten-free must have an undetectable level of gluten. The early 2010's is when the shift in gluten-free diets started. At this point removing gluten was not longer a medical treatment Celiac's Disease, but a diet method.

Although in the past, gluten sensitivities were very obscure, it is now estimated that gluten-related disorders could affect 10% of Americans. While gluten sensitivity is being seen more often all over the world. It has been found that more consumers who don't have any Celiacs Disease, or non-celiac gluten sensitivity, decided to change to a gluten-free diets by choice. According to a study that was published in The Journal of Internal Medicine in November 2016, in 2009 and 2010, 0.52% of Americans without celiac disease eliminated gluten from their diets, and by 2014 that percentage rose to about 1.69%.

The increase in people on a gluten-free diet could be due to the benefits that can be found from eating that way. Dr. Axe wrote an article talking about Gluten. He states that a diet low in gluten could potentially increase fat burning, provide a burst of extra energy, reduces inflammation, and easing of digestive symptoms like gas, bloating it diarrhea.

In the article by Dr. Axe he lists 6 ways a person can benefit from a gluten free diet. They are:

  1. May ease digestive symptoms
  2. Could provide extra energy and resulting in less brain fog
  3. Could be beneficial for children with autism
  4. Can decrease inflammation
  5. Promotes fat loss
  6. Improve symptoms of Irritable Bowel Syndrome

Some research in the last few years has found that gluten & gluten containing foods can potentially be a trigger for joint pain. It has been proven that certain foods are pro-inflammatory, meaning they increase inflammation. Pro-inflammatory foods could include gluten-containing grains, and any of the thousands of foods that are made from those grains. Many people with celiac or gluten sensitivity have found that when they remove gluten and gluten containing products they have less arthritis pain. However, most providers don't feel like there has been enough research done on humans to determine if gluten can really help reduce inflammation.

That being said, medical experts caution that no one should begin a gluten-free diet for arthritis before having testing for celiac disease. Due to the fact that it might not be gluten causing the problems it could be a wheat protein allergy or lactose allergy or an issue with FODMAPs(which is small sugar molecules in some fruits and veggies.) They can all be pro-inflammatory and irritate the gut as well.

Since gluten-free diets have become one of the current "fad diets," experts have began to warn people that gluten-free eating might not offer benefits. If you don't have gluten sensitivity changing to a gluten-free diet could actually do more harm than good in the long run.

"We definitely don't recommend a gluten-free diet for weight loss. My dietician will tell you that. The reason why is, when they remove gluten from a lot of these foods to make them taste more appealing, they add more calories or carbohydrates," said Dr. Runa Watkins, assistant professor at the University of Maryland School of Medicine, who specializes in celiac disease.

"The second thing is, being on a gluten-free diet also puts you at risk for other nutritional deficiencies in the long run, such as like B-12 and zinc and folate," she added, "And cost-wise, it can be expensive. So we definitely don't recommend it just because."

What you don't hear much about is other foods, chemicals and medications that cause inflammatory issues, which is great for those without a diagnosis. People who have celiac symptoms or inflammatory issues who test negative for celiac disease are left without a diagnosis. But we are starting to learn about other foods and meds that could potentially produce the symptoms they are having. Recently there have been studies that have shown that the following foods and additives can trigger symptoms identical to celiac, gluten sensitivity and increased inflammation

The following list contains foods and additives that can potentially cause the aforementioned symptoms.

  1. Sugar
  2. Vegetable Oil
  3. Fried Foods
  4. Refined flour
  5. Dairy
  6. Artificial Sweeteners
  7. Artificial additives
  8. Saturated Fats
  9. Grain Fed Meats
  10. Processed Meats
  11. Gluten in store bought bread
  12. A second round of alcohol
  13. Trans fats
  14. Fast food

There is new research that has been done and published in the Journal of Proteome Research that has identified 5 new groups of non-gluten proteins that are responsible for inflammatory issues in patients with celiac. These proteins are very different to the gluten proteins that are known to cause celiac disease. This research gives those who test negative for gluten antibodies but respond well to a gluten-free diet hope. Hope that one day we will really understand what foods cause inflammation issues, GI symptoms, and what foods don't.

In order for you to totally remove gluten from your diet, reading food labels is essential. Sadly, most of the time you won't find "gluten" listed in a food label. So instead you should avoid foods that contain the following

  • Wheat
  • Rye
  • Barley
  • Malt
  • Brewer's Yeast
  • Oats (unless you see on the label that they are gluten free)

So now you may be thinking, "What's left?" So below you will find a list of good gluten-free foods, that are very nutrient dense.

  • Quinoa
  • Buckwheat
  • Brown Rice
  • Corn Grits
  • Gluten-Free Oats
  • Nut Flowers
  • Veggies and Fruits
  • Meat, Poultry and Fish
  • Nuts and seeds
  • Beans and Legumes
  • Dairy Products

Fad diets will come and go, just look at how Jenny Craig, South Beach Diet, or Weight Watchers are in and out of popularity. Everyone is always going to be looking for the easy out and the quick way to lose weight. The gluten-free diet is not one you should look into for weight loss though. Gluten-free diets really should be reserved for those who truly have a gluten sensitivity or have tested positive for celiac disease.

It is essential that you talk with your doctor before you make ANY DIETARY CHANGE. If you want to eat a low gluten or gluten-free diet, your Doctor needs to check to make sure you don't have a gluten sensitivity. Simply because changing to a gluten-free diet can actually be detrimental to your health if you don't have a reason to be eating that way. If your doctor okays the diet change, and you have a good experience with the change, stay the course. But remember when shopping to read the labels. In many cases when gluten is taken out of products, a lot of preservatives are put in its place. Many times there will be more calories and carbs in "gluten-free" food. If you are changing your diet and removing gluten and gluten containing products to see if inflammation levels will drop, please check with your dr before making dietary change. What may work for one person may not work for another. That being said, I expect that in the coming years more research will come out about how gluten impacts inflammation. I also expect more guidelines to come out from the FDA regarding the nutritional content of gluten free foods.

I hope that you were able to learn something from the information provided. And that you might be able to make a more educated decision on what you want to do regarding gluten in your diet!

** If you like this type of research based post please let me know in the comments. I want to produce the kinds of things you guys like to read!!

With Love,

Amber

The Ugly Truth About Chronic Illness

The ugly truth...... the lives of people who are chronically ill are often not what you may think. Most suffer a lot more than they are willing to share. We fight something everyday, whether it's pain or fatigue or just feeling bad overall. And naturally we don't want to seem like we are always negative. We don't want to appear like there is nothing good in our life, so often times we hide all the bad and just talk about the good.  But after awhile this gets old and too hard to keep up the lies. So we just stop talking to people and start shutting people out because if we don't see them or talk to them you don't have to lie about what is really going on. For a good majority of people with chronic illness even on the days when we "look and sound good," we are still fighting some part of our disease process. There are very few days where we feel "normal." I recently read a statistic that said that 80% of people with chronic pain/illness will hide their pain and symptoms from friends and love ones. At first I thought this was a crazy statistic but the more I thought about it I really believe that's true. We don't want looks of pity or for people to feel sorry for us and by keeping things to ourselves this is less likely to happen. If we don't share we don't have to worry about what others will think or say about us.

It is really easy to pass judgement on someone you don't know who looks fine. You see a overweight young women getting out of a her car that is parked in a handicapped spot, and think there's nothing wrong with her she's just fat! Almost all of us have all done this at some point, myself included. But we should all really think twice about spewing judgement! By just assuming something about someone you don't know at all or someone that you are close to you make them feel badly about themselves, and make them not want to go out to do things. Just because they look fine doesn't mean they are not fighting something on the inside. I know for me it's easier to just not say anything about the amount of pain I live with. Simply because people will want to pass judgement on my pain, my lifestyle or how I treat my pain. But honestly it's no one else's business.

If you see a young person limping or parking in a handicap spot don't always assume they are jut lazy or overweight. They could have any number of health problems that you could never see. Heart disease, lung issues like asthma or COPD, cancer, Lupus, RA etc. Same goes for anyone really, not just those that are young. I read somewhere that 80% of older people have one chronic illness, while 50% have at least two! I know how easy it is to place judgement, but until you have walked in their shoes you will never know what's really going on in their life.

The ugly truth is that most people with chronic illness have very few really good days. Often times the bad days outweigh the good. That being said you may not know this because they don't tell you. But it's just the truth. Most people with chronic pain won't ever tell anyone just how bad their pain is and how much it impacts them daily because they don't want the judgement. In these days people hear chronic pain and automatically think druggie. What you don't know is that many of us would rather do anything than take pain meds. If we could work a full time job and be a truly functioning member of society we would! For me personally I would give basically anything to be able to go back to working as a Nurse. I miss it ALL the time and often reminisce about the days when I was able to work. I never wanted to end up like I have. But it happens. Anyone can experience a life changing illness or accident. It's not just a certain kind of person who these things happen to. So be mindful of that. Be mindful before you pass judgement and before you say hateful things to someone. You probably know next to NOTHING about what their life on a daily basis is like.

The Strange Foe and Friend by Amy Nora

When it is 3AM and you are awake for your sixth day straight from painsomnia, it is hard to see anything good or nice in pain.  When you have a chronic disease such as Lupus, Fibro, Rheumatoid Disease, or many of the hundreds of others auto-immune diseases pain is just a part of life that sadly you live with.  Pain is a function that warns us that something is wrong.  It is our body warning us of danger in the case of a heart attack, of a catastrophic injury, or of the constant disruption of a system or systems.
This morning, I was laying there thinking that the pain in my legs had become almost a comfortable old friend.  It Is the pain I know that lets me know I have gone to far, the cliff is about ten feet ahead, but I am okay.  It is actually the oldest pain of my disease state.  Maybe that is why it is so familiar to me.  I hate it, I am by no means saying that it is something I like or appreciate as an entity within me.  Yet that leg pain is always the first to warn me that my disease is going haywire, that I have pushed to hard, that my world is not right.  In an odd sense, my foe is also my old friend.  It lets me know that my nemesis is preparing to strike.  It has become something I have learned to cohabitate with regardless of whatever else is going on.  The fire may burn hot with inflammation, but it is a familiar inflammation I know.   I know what will come next… I know what the next steps of my treatment protocol will be.
Today, I challenge you to think about what your warning symptom/Sign is… Do you have something that lets you know you are getting ready to flare?  A trigger?   Is there a common symptom or symptoms that warn of a coming flare?  Part of disease management is being able to target these.  Sometimes, no matter what you do there will be no warning.  You will wake up one morning in a flare, or you will be out to lunch and by the time you get home you will be unable to walk because of fatigue and inflammation.  But knowing symptoms of flares help prepare you to fight back against these diseases.
You can then work with your doctor to isolate these symptoms and work on a treatment protocol when these symptoms arise.  It also gives more information to your doctor as to how your disease works and acts.  This grants them more insight and information.  Remember, any information that we can continue to glean on auto-immune diseases is needed.
Knowledge is power!  Preparing yourself, Knowing what to expect and how to help yourself empowers you.
In Lupie Love.....

How Many Times Have you Heard, “Just Lose Some Weight”?

If I had a nickel for every time I've heard over the course of my life that losing weight would help, I would be a rich rich women by this point in life. Yes, I know that getting to and staying at a healthy weight is important! So is eating the right foods and exercise. But in the long run will losing weight really fix or cure your health issues? Yes, I'm sure it probably will help some. But it's not going to fix everything!! People like to throw that comment out for every issue. Oh you have headaches, lose some weight! Oh you have IBS, lose some weight! Oh you aren't having any luck dating, lose some weight. Oh you're having problems getting pregnant, lose some weight. I assume in the majority of cases people truly do not mean to be a Debby downer by telling others this. But they also probably have no idea how it feels to hear that from people you loved and respect, and expect some sensitivity from. If you've never struggled with your weight you have no idea how it feels for a friend or family member to direct those three words at you. "LOSE SOME WEIGHT!" As a person who has struggled with my weight since High School I understand what a touchy topic this can be. I look back at my teen years and would give anything to be back at that weight now. But sadly that Amber was about 40lbs ago. But I didn't just get fat due to poor choices and lack of proper food, just like many other chronically ill. Most of us probably took the DEVIL drug, aka Prednisone. Yes, prednisone fixes many many things. But it is also known to cause weight gain due to the cravings many deal with while taking the medication! And not like 3lbs weight gain. We are talking like 25, 50, 75 lbs. And it came on FAST. Your symptoms are mostly gone but now you got all the bonus weight. Sigh. The weight no one wants.

But it's not just Prednisone that causes weight gain. Hormones often used for birth control can also cause weight gain, as well as Lyrica which is used to treat fibromyalgia! There are many many more that can cause weight gain. The point I'm trying to make here is that every over weight person you see did not just sit on the couch eating chips and watching Netflix all day! Even though that is what people automatically assumes, it is not always the case.

Did anyone think that maybe those of us who gained weight while on Prednisone might deal with a LOT of daily pain or extreme exhaustion!?!? Have you ever lived with so much widespread pain that literally every joint, bone and muscles hurt so bad that it's torture even getting out of bed. Much less taking a walk or going to the gym. Does anyone consider the fact that many of us who are over weight can't stand the way we look and can't look at ourselves in the mirror. Many of us who have gained weight due to medical conditions or medications never asked for this. We didn't just give up on ourselves and sit and eat chocolate all day. We got sick!!! And because of that many have taken medications that can cause rapid weight gain that doesn't come off easily.

There are also those in the chronically ill community that gained weight because of the pain. They may have not felt like being the most active person. Every step, every tiny movement make your whole bodg ache. Then when someone throws out the "just lose some weight," comment and you just wish they could live in your shoes for 24 hours so they know what's it's like. It's honestly really hard to do anything at times, even low impact exercise can hurt! So what I am saying is when you already hurt in places you didn't know could hurt the last thing you want to do is "hit the gym!"

If you really think you are giving offering up some groundbreaking piece of advice to work out and eat healthy. YOU ARE NOT! We've heard it from family and friends and even the doctors. I will admit the best I've ever felt was when I wasn't walking in the morning before it got hot and ate a diet low on gluten. (gluten has been found to mess with inflammation in everyone.) It just wreaks havoc with the chronically ill. But let's be honest eating healthy can be really expensive! And no that's not a cop-out, but if you have ever tried to eat a gluten free diet, it's hard at first and it's expensive. And let's be honest until you are ready to make a big change it isn't going to happen. We are the only ones who can decide that we need to change the way we eat &/or our activity level. No one else can do it for us.

I guess the takeaway from my rant and rambling is that I wish people would work on their delivery. If you are kind and truly concerned about my wellbeing, I'm going to be more apt to listen to you. More than I will listen to the person who just tells me I'm fat and I need to lose weight. It's not a surprise I know what I look like. I understand that research shows "When patients lose 5-29 percent of their body weight, the symptoms of chronic Conditions will improve!"Per the Cleveland Clinic. I know this but sometimes just getting your body moving and making that first move is the hardest part.

Explaining Fibromyalgia in Six Quick Points

Fibromyalgia is a term that has been thrown around for years. For many years the medical profession used Fibromyalgia as a catch all. People who had generalized pain that couldn't be diagnosed would be given the diagnosis of Fibromyalgia. The medical profession didn't really seem to understand what caused it, and what could be done to treat it. In the past decade the condition has become much more understood and there are new diagnostic criteria that the patient must meet. I will discuss those shortly. Like many other conditions the more research that is done the more everyone understands it and it can be treated.

1. So what IS Fibromyalgia? The definition for this condition has evolved over the years. For now it is defined as a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.

2. How many people have Fibromyalgia? Most recent estimates say that there are 3 million cases per year!! According to The National Fibromyalgia Association, Fibromyalgia is one of the most common chronic pain disorders. It is estimated that 10 million people in the U.S. are affected, and an estimated 3-6% of the world population. This condition is normally seen in women, approximately 75-90% affected are women. But it also occurs in men and children of all ethnic backgrounds.

3. What causes Fibromyalgia? Currently researchers are not exactly sure of the cause of FM. That being said more research is being done all the time that is leading in the direction of determining the exact cause. Most agree though that FM is caused by issues with the nervous system. They feel that those with FM will experience amplification of pain due to the abnormal way the nervous system is processing the signal. The newest research is leading in the direction that there may be a genetic predisposition in those who have FM. I expect to see a lot of new information coming on this front in the coming years!

4. What symptoms would a person with Fibromyalgia present with? The main complaints a person with Fibromyalgia usually present with the following: pain, fatigue, and sleep disturbances.

Pain- The pain that comes along with this condition is usually chronic and widespread. It can be felt all throughout the body and may vary in intensity. The pain can be described as stabbing, shooting, aching, throbbing or even as numbness and tingling. Usually people will complain of morning stiffness and abdominal pain until they get stretched out.

Fatigue- The fatigue associated with Fibromyalgia is much, much more than just being tired at the end of the day. This fatigue is an all-encompassing exhaustion that interferes with daily life! It is causes an inability to complete basic tasks.

Trouble Sleeping- Often times many people who have FM also have some sort of a sleep disorder that prevents them from getting a deep, restful, restorative nights sleep! This making the fatigue that much worse!

Cognitive difficulties - Many who suffer from FM will complain of "fibro fog." Which is also known as brain fog. This is a symptom of fibromyalgia where you feel as though you can not think straight. You may have trouble understanding things, remembering things, or even losing things. All of which can be "normal" with Fibromyalgia. This is a form of cognitive dysfunction that comes and goes with FM.

5. How is Fibromyalgia diagnosed? In 1990 the American College if Rheumatology (ACR) developed classification criteria for diagnosis. The criteria included a history of widespread pain in all four quadrants of the body for a minimum of 3 months prior to diagnosis. It also required that the patient have pain in at least 11 of the 18 designated tender spots. In 2010 the ACR developed new diagnostic criteria that did not rely on evaluation of tender points. Instead focused on the person's pain being widespread and accompanied with other symptoms like problems sleeping, and fatigue. They also take into account the cognitive issues that the patient may be feeling/dealing with.

6. How is Fibromyalgia treated? In order to effectively treat FM the symptoms need to be treated. Thus treatment is really about symptom management via medications,or other treatment modalities. Medications or other treatments like massage to reduce pain, sleep management and finding ways to lower stress are the main treatment modalities. Exercise and eating healthy, as with most conditions are encouraged to help lower the pain level. A person with FM will also need to discuss the cognitive difficulties they may be having with their provider so a proper treatment plan and recommendations can be made.

This was a quick and dirty way to explain Fibromyalgia, how many people are impacted, the suspected causes of FM, as well as the diagnosis and treatment of the disease. Even with the changes in diagnostic criteria and more research being done, FM is still not fully understood. And treatments often end up being trial by error. One medication/treatment may be prescribed and if that works they will continue it. If not, they will continue down the line trying to figure out what works for each person. And the fact that many will also experience a number of other symptoms and overlapping conditions, like Irritable Bowel Syndrome, Lupus & Arthritis can complicate things. That being said over the last decade the understanding of the disease has increased and they are always working on new medications for treatment of FM. Based on the trends over the last few years it should be expected that there will be big advances in the understanding and treatment of FM. This post just shows more clearly that those who suffer from FM are NOT alone! It also shows that patients need to continue to advocate not only for their own care, and the care of others who can't advocate for themselves. And more focus needs to pushed through the proper government channels to advocate for more money for research of this condition!

With Love,

Amber

Why Does Weather Make The Pain Worse?

Okay I know I can't be the only one who's pain and comfort is impacted by the ever changing weather! And this winter/spring has been the WORST!! In the last two weeks it seems like my pain has been almost constant. I think it's partially due to the fact that we've had 70-80 degree days with thunderstorms that turned into a 30-40 degree day with winter weathe !! Mother Nature sure has been a little confused as of late. I have never totally understood why the weather has such an impact on people with any kind of chronic pain. So I decided I would do a little research and share the information I've found!

Weather.com explained it like this, they say that the changes in barometric pressure are what causes the fluctuations in pain for everyone with arthritis, lupus, rheumatoid arthritis & fibromyalgia. Really, anyone who has chronic pain or migraines. It is said that any change in barometric pressure or change in the weight of the air that presses against the surface of the earth can cause headaches and increase joint pain. There have been studies done and published that show that two thirds of people with chronic pain in all parts of the US believes that there is a link in weather changes and increased joint pain and migraines. A study done with 800 Europeans with osteoarthritis found that 67% report that they feel that weather affects their pain!

Like those with chronic pain, migraine sufferers also report that their migraines are linked to weather patterns. It is believed that barometric pressure changes, along with changes in humidity and temperatures could potentially affect the pressure in the brain. Dr Steven Graff-Radford the director of a program for headaches at Cedar-Sinai states "Though the mechanism is somewhat unclear, what is quite clear is that overcast, cloudy and rainy days produce more migraines." Mayo Clinic says that for some people changes in weather may cause imbalances in chemicals in the brain, including serotonin, which can potentially cause migraines. Allergies are also a big cause of headaches (migraines) this time of year. It's getting warmer and all the things are blooming. If you have problems with allergies that lead to headache you need to be proactive. By taking antihistamines to help keep the allergies at a minimum. (Of course check with your doctor before taking any over the counter allergie medicines.)

One thing that everyone is sure of is that cold weather makes pain worse. Research has proven that when you are cold, your muscles, tendons, and ligaments tighten and become less flexible. One way to help reduce the pain due to cold weather is to stretch. Stretching will help to loosen those muscles, tendons and ligaments and help to make your body not so stiff and make it easier to move around. Even in days when you don't feel like being active, doing some sort of exercise is important. Inactivity can actually increase some types of pain.

After doing my research the main things I found is that there is a real link between weather changes and increased pain levels and migraines. It's great to know that it's not just me that experiences that! I know that I am not. But sometimes it feels like you are the only one dealing with an issue. The best thing we can do to deal with the increased joint pain is to try and stay active. I know that's much easier said then done. But especially this time of year when the weather is all over the place, staying active will help to keep you from getting stiff and having more pain. In reality all we can do is hope that Mother Nature settles down and the weather will become more stable.

How I Really Feel About........ Pain

Pain..... is something I deal with daily. And I am guessing that many of you do as well! It has just become a part of our daily lives and something many of us don't give a second thought to. And most of us would give anything to have one pain free day where nothing hurt at all without having to take a pill to get that way. That being said it has become a BATTLE for some to actually get the medicine that they need to treat said pain. Thanks to all those who are abusing pain medicine it makes those of us who actually battle chronic pain to also be viewed as an addict to some care providers. It is so sad that people who have chronic pain and live in pain everyday have to jump through such hoops just to get the medicine that we need to be able to function. I usually try to stay away from the highly debated issues like this, but I read something that really struck a chord with me this weekend. A fellow Lupie posted that she got to the point where she could no longer handle her pain at home with all the alternative options, and ibuprofen she has at home. So she went to the ER, simply because she didn't know what else to do. And of course because her primary complaint was pain, she was looked at by some of the care providers that she was simply drug seeking. And I know she is not alone in this I know this happens all the time. It has happened to me when I went in to the ER with a Hemiplegic migraine, there was no test to show that I was truly in pain so its easy to assume that I really just want pain medications. I even had one doctor tell me that I was just a hypochondriac and that there was no reason for me to be seeking treatment in HIS ER.

That's the whole problem with autoimmune conditions and chronic pain syndrome, there is not always a blood test or imaging that will show that the patient is truly hurting. Most doctors don't understand autoimmune conditions therefore they don't understand why we are in pain. If they can't see a lab result change or something on an MRI or CT Scan to explain the pain they just don't get it.  And it frustrates me to no end that I can't be honest about my pain with some of my doctors without them looking at me and thinking I just want the drugs. When in all reality I just want a day where I can wake up and function like a normal person. I don't like how the pain medications make me feel but if that is what I have to do to function then so be it. I think many of you would agree with me when I say I just want a day without pain. I would give almost anything to have a day, a week, a whole seven days where I didn't hurt somewhere and I could do all the things that I want to do without having to spend the next day(s) in bed.

The government at the local, state and federal levels are trying to do what they can to change how pain medications are prescribed and filled to decrease the level of abuse. In some states you are only allowed a seven day prescription no matter what the reason for needing pain medication is. In other places you have to give a urine sample every thirty days before you can get a new script to show that you are really taking the medicine and not selling it. Pharmacies are now being linked in many states throughout their local areas to try to prevent those abusing drugs from doctor hopping and having multiple scripts from multiple different doctors. While all of this is positive and will hopefully start to decrease the abuse of pain killers. It has actually made it harder for those of us who really need it to function. We are being made to jump through more hoops then ever before.

The real question I guess is how do we change the views of these care providers, especially ER providers. Where they see a large amount of drug seekers everyday. What can we do to prove to them that we aren't wanting more and more medications, that we just want help getting through this flare up. Even with our conditions in our charts that say LUPUS, MIGRAINES, ENDOMETRIOSIS or whatever conditions you have that cause pain, they still often times wonder. I have thought about this a lot and have come to the conclusion that we will never change the way they look at us. We just have to have tough skin and prove to them that we don't want an extra script or something new to take at home, we just needs something to break the cycle we are in. Maybe one day more doctors and care providers will start to understand the conditions that cause chronic pain. Until then we are stuck in this horrible rut and just have to prove our self to each new provider, and show them who we are and what we stand for.

With Love,

Amber

Let’s Talk.........Leggings

It's not big news to you if you know me or others who struggle with chronic pain or Fibromyalgia. Or that when we dress, most days it's purely for comfort. The general rule is that the more tight and uncomfortable the clothes are, the more uncomfortable we will be throughout the day. So yes many times we choose to dress for comfort over fashion. And yes, sometimes that means we look a bit slob like or dare I say lazy. But I can guarantee if you asked anyone struggling with the pain of Fibro (or other chronic pain) and the struggles of clothing, that they don't mind. Anything we can do everyday to make our lives a little easier or pain free we will pretty much do. That is within reason of course. Sorry aover the course of the last few months I've been on a search for the "PERFECT" legging! And today I want to share what I have found! Searching for the perfect legging can be long and arduous at times. And just plain frustrating. Okay, arduous, may be a bit of an exaggeration. However, the experience can be frustrating!! One of the biggest frustrations for me along this journey was to find leggings that not only fit but didn't make me look like a whale, and didn't break my pocket book! Another frustration with leggings in general is the looks of judgement or even disgust that one might receive. Just because I am dressing in leggings in public does not mean I am lazy!!! It simply means I am having a crappy day filled with pain and I don't need your judgement or to explain why I chose my attire!!!

There are a few guidelines I feel ANYONE shopping for/wearing leggings should follow. They are as follows.

  1. Wearing your TWEETY BIRD or SPONGE BOB pajama pants in public is NEVER okay!! For everyone's sake please take a moment and throw on some real pants before leaving the house!!
  2. When wearing said leggings I ALWAYS encourage ladies to buy and wear shirts that are long enough to cover your behind. It's a much better look overall.
  3. Lastly, NEVER EVER wear nude color leggings!!! This is not a good look on anyone!!!

So now that we have talked about the guidelines for wearing leggings, let's discuss my TOP 5 brands. These are my personal favorite leggings from 5 different retailers, and at different price points, in no certain order.

g1. Faded Glory- Fleeced Lined, Full Length Leggings. $9.99 (2 pack)~~ These leggings are PERFECT for the winter and for anyone who gets cold easily as they are lined with fleece. PROS- very warm and cozy, great price point, does not shrink if accidentally put in the dryer. CONS- Can cause the person wearing to get too warm! The waist band is an awkward width, it is not the standard wide waist band that most leggings have so it can sit easily in a person's folds.

2. Women's Leggings Old Navy- Price Range-$10.00- $32.00. They have a variety of lengths and styles. PROS- very soft and comfortable, thin waist line (the pair I have is a thin waist band, they have varying waist band widths available). CONS- will shrink if dried in dryer, fabric begins peeling after only a couple wears. Can be found in store or on Online at Old Navy.

3. Maurices- Ultra Soft Legging. Ranging in size from 0-4XL, with various styles and color. The original black ultra soft leggings are $18.00, & $20.00 for plus sizes. Right now they have a site wide sale, fBuy One, Get one 60% off! So now is the time to buy!!! PROS- VERY soft, great quality fabric that doesn't shirk in dryer or peel after multiple times wearing. CONS- For ME these are much to high waisted, to the point the waist band is up under my breasts. I read reviews and did not see many complaints of this. So I believe it's just my shape. These leggings can be found in store and on their website.

4. Agnes and Dora- In order to shop this companies options, it's best to find yourself a distributor. My distributor is Sarah Clawson, she keeps some stock on hand and has a Website (click the hyperlink to shop) on which you can shop. Sarah is super easy to work with and is always willing to go out of her way to find you what you are looking for. Leggings are ALL $22.00. PROS- These leggings are very very soft and warm. They come in multiple colors, patterns and sizes. Sizes range from XS-XXXL! Sarah routinely posts new inventory on her Facebook site so her customers can see all the new things coming in! CONS- I really love these leggings and the only con i can come up with is the width of the waistband. I prefer a WIDE waistband, and these are more of a skinny waistband. Sarah's website is linked above but you should also check out her Facebook Group here!

5. Last but certainly not least, a brand I feel confident in saying you have probably heard of and may actually own some. LULAROE. This is another company where you need to find a distributor to purchase from. The LLR distributor I have become loyal to and buy all my LLR gear from is Rebecca Weddle. If you search Lularoe Rebecca Weddle on Facebook you can find her VIP group. In that group she offers frequent sales and discounts. Now to the leggings!! They come in sizes Tween(size 00 and 0), OS (one size, size 2-10), TC (Tall & Curvy, size 12-18) and TC2 (Tall and Curvy too, size 18+). PRICES are $23.00-$25.00, and they come in countless colors and patters! PROS- Fabric is super soft and stretchy, the fact that they come in countless colors and patterns as I mentioned above. And these are quality items and will last a LONG time. The patterns do not fade and they can be dried if necessary, but it is not recommended! I also love the WIDE waist band that feels like it is holding everything in where it should be! CONS- Can be pricey, but like I said they hold up really well! Also it is almost impossible to get a plain colored legging through LLR!

This is just a quick overview of my favorite leggings I have found. I know you may be thinking this is a silly post. But until you have a condition that causes pain everywhere which can be made worse by clothing you won't truly understand! Leggings can really feel like a lifesaver when you have to get out of the house but the thought of having to wear "real" clothes makes you want to cry! I hope this guide helps you to chose some better options as far as brands and distributors. Please leave me a comment letting me know what you thought of this post. But please be nice!!

With Love,

Amber

Let Me Tell You How I Really Feel!!!

Disclaimer: These are my opinions and it's okay if yours don't agree! As I lay here feeling as tho I can feel every....single.... part of my body and it all hurts. I decided to look for some inspiration. Something to get me through this trial. I decided why not? None of my other tricks are working. Not even my Gold Standard Go-To's. Like sitting in a hot bath, I think I've used all the hot water in the house! Probably good that no one will need any for several hours yet. I can't sleep because even my hair hurts. I started looking for other ways to deal with the pain. Tried guided meditation which has helped some in the past. NOTHING! I started reading other blogs, reading inspirations pages, and I found some that fit. Then I decided maybe my pain could help someone else so I'll Blog. And it'll be a good way to pass a few minutes where I can focus on something other than the pain. And I'll

Place the inspirational things I found helpful throughout the post!

Chronic pain is all psychosomatic (all in your head) people have been told! First, I would like to know how many (if any) o have been told that?!?! Secondly , I would like to know what gives those "Doctors" the right to tell you the pain you are feeling isn't real? And lastly, I would like to know if they have ever spent a week, a day or even a few hours totally overcome by PHYSICAL pain. No, I'm not talking about spraining an ankle, or hitting your funny bone. While yes, those things hurt, that pain isn't going to last. You can see an end in sight! With chronic pain you look for that light at the end of the tunnel and see nothing. Nothing but BLACK. There is no light. Chronic pain is just that, pain that's chronic. Pain that you will live with at some level EVERYDAY FOR THE REST OF YOUR LIFE!!

If I had a nickel for the amount of times I've heard "Well, I just don't know how you do it! how you put up with all that pain!" I'd be a rich lady. My answer is always and forever will be, "It's my only option. I don't have another. I can't just say you know today I'm not gonna deal and wish the pain away." There are days I wish I could, like right now. In this moment I wish I could just say "I'm done with you for now pain and it would go away!" But I can't. And neither can all the other hundreds of thousands who deal with similar things. So for all of you who also deal day in and day out with chronic pain I applaud you! You are some of the most courageous people I know! And it's because of you that I know I can keep pushing through.

"Courage is not having the strength to go on; it is going on when you don’t have the strength.” – Theodore Roosevelt (1858-1919), 26th President

The sad part to me is that most chronic pain sufferers & Lupus Patients suffers in silence.

They feel that it is a better option to suffer alone than to open up to a close friend or family member about what is going on. It's sad that we have to feel that way. But I know why it happens. Let me give you an example that maybe you can relate to. Have you ever been home from work on a sick day? Not welling enough to work but well enough that you can text or play on Social

Media? If you have been in this situation, did you receive any backhanded, dirty text, or comments about how much better you MUST be since you are up and on Social Media?!? Probably not. But the second you have a Chronic Illness or Chronic Pain and stay home and someone notices you on the Internet the rumors start rumbling about how you must not be THAT sick if you can be on Facebook. When it's quite the opposite. You still feel like a giant pile of horse manure, but Facebook is giving you a much needed distraction from what you are dealing with. And if you really wanna know, It's my business how I spend my time!! Not yours!!

Living with a Chronic Illness or Chronic pain sucks. That's just all there is to it. You usually end up losing out on opportunities in every aspect of your life, simply bc the pain is too much. No one should ever have to deal with pain to the point that they can barely physically move bc their entire body hurts. In this day in age there should be more medicines available to treat these horrible life altering disorders more directly. Those of you non-spoonies may be thinking, so go to the pain Doctor and get on some meds and move the heck on. Well, sadly it's not that easy. I am in the third largest city in my state and no pain dr will touch me bc I have Lupus and Fibromyalgia. They won't even see me in their office. So I, like many others across this fine country, are stuck without or get medication from a family doctor who is not trained in treating chronic pain.

In many cases we have those who are abusing the system and pain medications who have ruined the system the rest of us. Those of us who truly need treatment and medications should NOT be punished based on the poor decisions of another person. Okay I'll get off that soapbox.

But seriously if you've never lived a period in your life where pain took over don't be so quick to judge those who have. We who suffer would gladly give it all away to have a normal life again. We didn't ask for this, want this, and the largest majority of Lupus Patients did nothing to cause the situation that they are in. So please before you judge do a little investigating on your own. Don't assume that just because I look like a normal 32 yo female that you can yell or give me dirty looks for using a handicap tag. I have it for reasons that you may never know.

All we can do is keep fighting the good fight!! Keep doing all we can to advocate that we get good care and the meds we deserve. We deserve the chance to live a normal (or as close to it as possible) life just like everyone else does!

It does not matter how slowly you go so long as you do not stop.”

– Confucius (551-479 BC),

Philosopher

With Love,

Amber

Raising Awareness of Invisible Illness 

Invisble illness, invisible disability....... To those who don’t have one, most would assume that it’s in your head. Thus invisible. However, this so far from the truth An Invisible Ilness is an illness that cannot be seen outwardly.  So for instance; Migraines, Lupus, Rheumatoid Arthritis, Kidney Disease, thyroid disease, Heart disease, arthritis, fibromyalgia, Chronic Fatigue Syndrome, or Chronic Pain. This list goes on forever!!  Invisible illnesses could even include mental illnesses. You can’t and most of the time will never see mental illness outwardly. They are conditions that can not be seen by just looking at someone. They are conditions that may be wreaking havoc on a person internally but you would never know because they may or may not be showing any signs outwardly. The Invisble Disabilities Association has deemed October 15, 2017 - October 21,2017 to be Invisoble Disabilitoes Week Online. A week to celebrate if you will, or bring conditions like these to the forefront. So let’s do just that. When you see someone in their thirties get out of a car they just parked in a handicap spot. What’s your first thought? For most I would almost guarantee it’s not “Oh how sad, I wonder what condition has made them disabled!”  For most it is probably more along the lines of “Look at that fat lazy girl taking up a handicap spot. I bet that tag belongs to her grandma or somethings!”  Now, don’t get me wrong not everyone thinks that way. But I know a large amount of people do. I have even caught myself at times thinking things I shouldn’t. Sadly in this day in age it just seems like second nature.  People don’t automatically assume that their may be a reason that a 32 year old slightly overweight female has some big bad illness because on the outside other than maybe a limp or the look of exhaustion on her face you don’t see anything wrong.  

    According To Everyday Health,  “But for the millions of people who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are "invisible illnesses," explaining what's wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don't understand what's wrong with you.”

    So what do you do to get past the skepticism and the non-believers? Do you put up bumper stickers with a list or your conditions? Or wear a T-shirt that says something along the lines of “Yes, I’m really sick? No!  Because you can’t change the way people think.  All we can do is pass on awareness to our friends and family. And even the people who follow us on social media. The only way we will ever get past the way people who view those of us with invisible illness is awareness. 

    Awareness can come in many forms. For me Blog. I can get my information out to larger volumes of people by blogging. I also use My social media accounts as platforms to spread awareness. Do people get tired of it? I’m sure! But we have to spread awareness for the Invisiblem Illnessea that are touching our families and friends. Should we shove it down peoples throats? Absolutely not, people aren’t going to change!  Some people will always think we are just lazy. And you know what we have to be okay with that bc we can’t change anyone else. 

    So help me help us this week by spreading awareness of Invisible Illness. One way we can do so this week is to change the frame on our face book profile picture to one that says I live with an Invisible Illness for the week. That just might open some eyes for people around you!!  The Huff Post posted this graphic and it feels like the perfect way to end this blog. But should you have any questions or anything please reach out!  

    Go out and spread awareness of your Invisible Illness/Disability!

    https://www.everydayhealth.com/pain-management/invisible-illness-when-others-cant-see-your-pain.aspx

    https://m.huffpost.com/us/entry/8178886

    MVA - How They Can Have an Impact on More Than Just the Car. 

    Man….. you don’t think about how one situation can totally mess up your whole system until it happens. I realized that a week ago today when I was in a car accident. It was nasty. But nothing broken. Just a concussion and a torn up knee. And lots of bumps and bruises. (And the other person wasn't hurt either.)Then the realization set in yesterday that I am now in a lupus flare. And my adrenal glands are on their way to sending me into an adrenal crisis!!! I wrote my rheumatolgist to see if I could do steroids or anything to prevent the worsening flare. And she told me LIGHT STRETCHING was the only thing I could do. Really?!?!? You hurt as bad as I do everyday and then get on the floor and stretch. If I could even get to the floor there is no way in hades that I could get up. With my knee in an immobilizer and my arms so sore from crutches and the accident I’d be stuck. And they weren’t kidding when they said day two and three would be worse. Holy moly! It’s insane.  The scariest part of this whole ordeal wasn't the accident itself. Simply bc I don't remember it. But THAT statement is the scary part.  I have absolutely no idea what happened. The ambulance came quickly and whisked me away to the Emergency Room. That's when everything stopped. Apparently they didn't have any rooms in the back, so they set me in wheelchair with my c-collar, crying like a weirdo in the WAITING ROOM. This is where I sat for about two hours before I saw a nurse or dr.  Ya I get they were busy. But one would think that a car accident with loss of consciousness would trump other things but I guess not.  The whole time I was at the hospital I sat and balled. Like sobbing. I just couldn't quit. But I am so glad my mom was there with me the whole time. I wasn't always nice to her,but we blame the pain meds and the accident on that. But she stayed right there with me. Even at 32 it's nice to have your mom around when you need her!! 

    I'm a cryer yes. But I never sit and cry inconsolablely for a hour.  That's not my norm. So, I can only assume that it was the shock of the accident and concussion I had causing all those tears. The ER Dr told me I had no broken bones or major injuries. Put an immobilizer on my knee and gave me some crutches and sent me out the door. I was glad to go home but the really pain and soreness was just setting in. Man you never believe how much everything is going to hurt for days following an accident until it happens to you. I am still sore and very bruised and it's been a week today. And I still can't bear full weight on my leg.  Sigh. We are doing some medical tests and will give my knee another week go see if it heals on its own. 

    So not only am I deal with my pain and emotions from the car wreck. I am now dealing with the fact that I lost my job. I understand where they are coming from. My absences make it hard to count on me. And now that I can drive or work until the dr clears me. (We are going to test my heart and do an eeg to see if I'm having seizures.) That means I have no idea how long it will be before I am cleared to work or drive. I am not mad at my boss as I know she is looking out for her patients. And right now they need someone who can be there all the time. She did say that if I ever want to come back I can. That I've not burned any bridges. This company was fantastic to work for. And they went above and beyond to make sure I had what I needed. And gave me more chances than anyone else would have with my absences. But It still sucks because I have to go pick up all my belongings thatbwere in my office. Which is sad bc I loved my job and I'm sad that part of my life is over. 

    Now the question is what am I going to do for money $$. Because sadly we can't live free in today's society.  I have become a distributor for the makeup company Senegence. And in doing so have been able to make decent money. So I'm praying that I can continue to grow my buisness and that I can do this and not have to go to work again outside the house at least not right away!! If not I am not sure what route I will go. Only time will tell!! 

    So many emotions and thoughts are swirling through my head. Who would have ever guessed that losing your car in an accident could be so emotional. I guess for most it's probably not. But buying that car was the last thing my grandpa and I did together before he passed several years ago. So I feel like that car was my last earthly connection I have to him. And that's hard.  Because I miss him so much everyday. 

    Anyway, I'm a little rusty on this whole blogging thing if you can't tell. My thoughts have been all over the place. Which for a Lupie isn't that strange but usually my writing is better than this. But I wanted to share my thoughts and what has been going on in my life. I promise I will now be getting back into blogging now that I have a little more free time!!

    Love always ❤️

    Amber 

    Pain Medication.... The Debate

    Ma'am I see you have scheduled pain medicine on your list of meds......... Yes, I take them for my PAIN..... What do you need pain medicine for????  Well, let's see. Could it be the Systemic Lupus? Or Maybe the Endometriosis? Or could it be the interstitial cystitis? Or maybe the chronic migraines or fibromyalgia??????  For some pain medicine is the only way that they can make it through the day. Maybe even the only way they can get out of bed!!!  For others it's just something they can take a couple times a week and be good. Why is it that those of us with documented conditions that are known to cause pain are still looked at like drug seekers?  Have you ever been on the receiving end of questions about the medication you take that just gets you through the day? Do you ever feel like you are treated like a druggie or a criminal because you need prescription pain meds? 

    There is nothing more frustrating to me then being looked at like I'm a drug seeker when I go in to the dr or pharmacy because I take pain medication. And heaven forbid I ever go into the ER because if a hemiplegic migraine or a horrible lupus flair, and need some relief. When that happens it's almost for sure someone will look at me like I'm drug seeking. This shouldn't be!!! All the people out there who have abused the system and abuse prescription pain medication have ruined it for all the rest of us. 

    We shouldn't be grouped into that category. Especially when we have multiple document conditions that can cause life altering pain. But we are. I see almost daily that there are lawmakers trying to pass a law that should prevent the abuse of narcotic pain meds. But if that happens will we stop getting the looks? Or will providers stop making us feel like we can't seek medical treatment for fear of being treated like a drug seeker?? In my opinion no!!  It's always going to be a problem for us. No matter what laws are passed and how much thy try to cut down on the abuse of prescription drugs I feel like we are always going to be treated poorly. It's always an assumption that just because we take the meds we are a druggie. 

    I'm not saying every doctor or nurse or pharmacy treats people like that. But I guarantee that at least 5 or more of the people who are reading this could tell us a story about how they were treated or not treated because of the medication listed on their home Med list!

    How do we stop this unfair treatment? How do we stop feeling like everyone assumes the worst of us?  I wish I knew. But we need to find a way. Find a way to prove to the world that just because you take pain meds you are a seeker or a druggie. Prove to the world that these conditions that we suffer from everyday cause such pain that we need those meds. Prove to people that sometimes without those meds we wouldn't be able to get out of bed. Or complete our daily activities. And sometimes even WITH the meds we can not complete any of our daily routines. Do we carry a sign that has a list of our conditions? Sadly, that wouldn't help. Because if you haven't experienced the pain of these conditions yourself you can never fully understand. 

    How do we prove to the world that just because there are those scummy people who buy meds for abuse or steal meds to abuse them, that we aren't all that way? Sadly, in this day an age there is such a high rate of abuse of prescription meds that I don't know that we will ever be able to prove our case. According to the American Society of Addiction Medicine, Of the 20.5 million Americans 12 or older that had a substance use disorder in 2015, 2 million had a substance use disorder involving prescription pain relievers. And In 2012, 259 million prescriptions were written for opioids, which is more than enough to give every American adult their own bottle of pills!!! 

    I don't know about you but to me that data is staggering. And the fact that Drug overdose is the leading cause of accidental death in the US, with 52,404 lethal drug overdoses in 2015. Opioid addiction is driving this epidemic, with 20,101 overdose deaths related to prescription pain relievers is beyond understanding.  I completely underatand why law makers and medical providers want to find a way to cut down on the number of people taking prescription narcotics. But what they don't seem to understand is that there is a large population with chronic pain issues who truly require these meds. 

    According to the American Academy of Pain Medicine; pain is a significant public health problem that costs society at least $560-$635 billion annually, an amount equal to about $2,000.00 for everyone living in the U.S. This includes the total incremental cost of health care due to pain from ranging between $261 to $300 billion and $297-$336 billion due to lost productivity (based on days of work missed, hours of work lost, and lower wages).  These numbers are crazy to me. Do all these people really need pain medication or are some of them abusing it? Probably a little of both.  

     Chronic Pain is a real thing and needs to be dealt with. And those who really need the meds should be able to get them without feeling like they are being looked upon negatively.  I hope and pray that there is a way for this to be done. But at this point I don't know how to go about it!  (Okay rant over!)

    If you would like to share your story about how you have been treated negatively because you take prescription meds or have requested meds because of you condition. Please place those stories in the comments or email me. I would love to read them and compose another blog post with everyone's story. 

    -Amber  Resources:

    http://www.asam.org/docs/default-source/advocacy/opioid-addiction-disease-facts-figures.pdf

    http://www.painmed.org/patientcenter/facts_on_pain.aspx

    Medical Marijuana....The Real Story! 

    The big IT THING these days for treatment of just about anything is Medical Marijuana... How do you get it? Does it really work? How does it help with chronic illnesses? How do you take it, what forms does it come in? Lets take a look at a few diseases and how they are effected by Medical Marijuana!  Although cannabis is still illegal in the United States under the federal government, many individual states have legalized cannabis for VALID medical reasons. Each state has its own list of qualifying condition, and some states allow doctors to approve a medical condition that is not ok the legalized list. There are too many states and conditions for me to write them all out for you. So if you are interested in the approved conditions in each state check out the link below. https://www.leafly.com/news/health/qualifying-conditions-for-medical-marijuana-by-state

    Lupus is often manifested with joint pain and fatigue. Although it can effect many parts of the body and in many different ways. Medical Marijuana is often used to treat pain and inflammation mostly in Lupus patients. Patients are quoted saying they prefer using Cannabis rather than pain pills or muscle relaxers because there are fewer side effects for most when using Cannabis. It is said that the most effective ways to treat lupus with cannabis is to do so with high levels of CBD capsules taken orally daily. Although the capsules can be the most difficult to find. Juicing the leaves also seems to be an effective treatment according to research. And vaporizing CBD can be a good way to help lupus sufferers sleep. One can also eat the edible CBDs to help treat lupus. Although like anything finding the proper dosage can be frustrating, as it can be a series of trial and error. 

    Fibromyalgia is said to effect nearly 5 million Americans. It is a poorly understood condition that can cause deep tissue pain, fatigue, depression headaches and even insomnia. Research from 2014 said that most find medical marijuana to be far more effective than any of the prescriptions on the market designed to treat fibromyalgia. From this study it was found that 62% of the people who tried medical marijuana as treatment found it to be very effective. While only 5% said it did not provide them with any relief. Most people will take the capsules for fibromyalgia or in similar forms to the treatment of Lupus. Most commonly for fibromyalgia it seems that the capsules, the edibles or oils/creams are the forms most used. 

    Interstitial Cystitis (IC) is a pain bladder condition that effects more than 4 million people in the United States alone. Through research it seems that cannabis extracts may offer new hope for people with this very painful condition. IC causes symptoms like a urinary tract infections, abdominal discomfort and bladder spasms. In Illinois where cannabis is legal for medical treatment and IC is an approved diagnosis to receive cannabis. The IC Network found that about 63% of those diagnoses and use some sort of cannabis to treat their symptoms, and reported that the cannabis decreased their symptoms by 50%. Eighteen percent of those surveyed reported that cannabis completely relieved their symptoms. Fourteen percent said that it helped their symptoms by at least 25 percent. Although marijuana is still generally smoked to provide relief from pain, other forms are being developed that eliminate the effects of the “high,” yet preserve the medicinal effects. Since cannabis has had such a high rate of symptom control in IC, the pain relieving and anti-spasmodic effects of cannabis are now being looked into for treatment of other conditions. Vaporizing CBD or using CBD oils can be used along with capsules for treatment. 

    FORIA a company based out of Colorado is saying that their cannabis based product can help relieve menstrual cramps. This compound has not been studied as to how it would effect endometriosis. But one could assume that if it can help with menstrual cramps that the mechanism of action would be the same or similar for someone with Endo. FORIA was formulated to to maximize the muscle relaxing and pain relief properties of cannaboids. Without the psychotropic or feeling of being high like actual cannabis. The capsule is a blend of THC which is known to relax muscles and cramping in the body. One could also use CBD oils and creams for treatment if Endo.  Cannabis can be used to treat just about anything without the side effects of major pharmaceuticals. Cannabis has very few side effects and most could be viewed as positive effects. Like mood improvement, increased appetite, and better sleep. The major problem with getting medical marijuana is that in most states it is not legal. And in the states that it is legal your condition may not be on the approved list in order to get approved for medical marijuana. 

    If you feel that you or Someone you know could benefit from the use of medical marijuana in a state where it is not legal. Please contact your legislator and check for any movements in your state for the legalization of medical marijuana. 

    Note: To see the forms and ways to consume medical marijuana check out this website. https://unitedpatientsgroup.com/resources/methods-of-consumption

    While this method of pain/symptom control may not be for everyone. Research clearly shows that it is helping people. It is not a common method of treatment yet, but based on the increased use of CBD I think it will become more and more common.  -Amber

    Resources:

    https://www.leafly.com/news/health/treating-lupus-with-cannabis http://nationalpainreport.com/marijuana-rated-most-effective-for-treating-fibromyalgia-8823638.html http://www.midwestcompassion.org/2015/05/19/treating-interstitial-cystitis-with-cannabis/ https://endometriosisnews.com/2016/02/03/can-cannabis-relieve-menstrual-and-possibly-endometriosis-pain/ http://www.impactcannabis.org/endometriosis/

    https://www.whaxy.com/learn/does-cannabis-treat-lupus

    Alternative Therapy to Treat Fibromyalgia 

    Fibromyalgia........Is defined as a widespread musculoskeletal pain disorder accompanied by fatigue, sleep disturbances and memory issues. At this time there is no cure and no definite treatment. The standard treatments right now are pain killers, antidepressants and anti-seizure medications. These help reduce the symptoms but don't really treat the condition as a whole. So many people will turn to alternative therapies to help control the symptoms of their fibromyalgia! Let's take a look at some of the most popular alternative therapies.One of the most popular natural therapies is YOGA. There are several studies that show that yoga may help ease the symptoms of fibromyalgia Researchers for pain have linked yoga to lower levels of fibromyalgia-related pain among those who participate in yoga. Another study published by the Journal Of Pain showed that people who participated in a 75 minute yoga class twice a week for eight weeks reported less pain and had a lower stress hormone cortisol level. Another popular alternative or natural therapy is meditation. Dr. Daniel Lewis says that meditation may change the way your brain functions and helping to improve symptoms of fibromyalgia. A study published in Current Pain and Headache Reports stated that meditation can relieve fibromyalgia-related pain. Meditation may help calm the mind and ease the body, promoting deep rest and relaxation. End result it may help your body heal itself.

    5 HTP has also found to be a popular treatment. It is a natural Amino acid that helps your body produce serotonin, which is the chemical that helps control mood. An article published by the Rheumatolgy International suggested that 5HTP may help Improve fibromyalgia symptoms. It can help to relieve pain, ease morning stiffness, fatigue, and possibly anxiety! Even though it sounds scary, there has been a lot of research that shows acupuncture can help relieve fibromyalgia symptoms. Especially pain symptoms. With acupuncture one or more dry needles is inserted into the skin and underlying tissues at a specific point. Then the needle is gently twisted or manipulated causing a measurable release of endorphins into the bloodstream. (Endorphins are the body's natural painkillers.) One acupuncture treatment for some may last weeks to help alleviate chronic pain. A recent study showed patients who had acupuncture had a decrease pain and increased quality of life. Chiropractic care is a very common complementary or alternative care for fibromyalgia. It is used to treat pain in pressure point areas, back pain, neck pain, shoulder pain etc. Chiropractic care may be effective care for fibromyalgia because it may reduce pain levels and increase cervical and lumbar ranges of motion. Chiropractic care is based on the principle that the body is a self healing organism. To reduce pain and increase healing the chiropractor will adjust the back. The goal being to restore normal transmission nervous impulses by  increasing the mobility between vertebrae, which may have become restricted, or slightly out of proper position. There are several herbal agents that are used to treat in the treatment of fibromyalgia. Here are just a few: SAMe (S-Adenosyl-L-Methionine)-This amino acid derivative may boost levels of serotonin and dopamine, another brain chemical. Limited research suggests SAMe may improve mood and sleep.

    MAGNESIUM -Low levels of this element may be linked to improving fibromyalgia symptoms. However, research has not turned up solid evidence that taking magnesium supplements improves symptoms.

    MELATONIN-This natural hormone is often used in supplements to help improve someone's sleep patterns. It may also ease fibromyalgia pain.

    ST JOHNS WORT- Though this herb is sometimes used to treat certain fibromyalgia symptoms, there’s no solid evidence that it works. A few studies suggest it may help with mild depression. But it can also limit the effectiveness of some medications.

    There are many options for alternative therapies for the treatment of fibromyalgia, I've only covered a few here. Remember that you always need to check with your healthcare provider before starting any alternative therapy. I hope that something here will help you and give you some relief.

    -Amber

    Resources:

    http://www.m.webmd.com/a-to-z-guides/features/alternative-treatments-for-fibromyalgia

    http://www.m.webmd.com/a-to-z-guides/natural-therapies-and-alternative-treatments-for-fibromyalgia http://www.healthline.com/health-slideshow/fibromyalgia-natural-remedies#8

    What is Interstitial Cystitis?

    Interstitial Cystitis..... I've never heard of this? What is it? How would it make me feel?? Interstitial Cystitis or IC (Bladder Pain Syndrome BPS) is defined as a chronic or long-lasting, condition that causes painful urinary symptoms. It is a feeling of pain and pressure in the bladder without having an infection or other clear causes.

    What are the SYMPTOMS of IC- The symptoms from this condition vary widely from person to person. That being said the symptoms may also come and go and not be continuous. Some people state they feel like they have a bladder infection, even though no infection is present. Women also complain of painful sex, discomfort, pressure, tenderness or pain in the bladder, lower abdomen, and pelvic areas.

    What CAUSES IC? - Experts are not totally sure what causes IC/BPS but below are some theories of the cause.

    • A Defect in the bladder tissue, which may allow irritating substances in the urine to penetrate the bladder
    • A type of inflammatory cell, called a mast cell. This cell releases histamine and other chemicals that lead to IC/BPS
    • Some in the urine that damages the bladder
    • Change in the nerves that carry bladder sensations so pain is caused by events that are not normally painful (like the filling of the bladder)
    • The body's immune system attacks the bladder. Similar to other autoimmune conditions
    • Having a family member with IC/BPS increase your risk of developing either

    How is IC/BPS DIAGNOSED? At this time there is no medial test that can tell a patient they do or do not have IC/BPS?

    • To make the diagnosis the physician first determine if your symptoms are typical for IC/BPS.
    • Next they will need to determine if there could be another cause of your symptoms.
    • The doctor will need to take a detailed medical history including: how long the symptoms have been present, what symptoms you are having, past health problems,  current health problems, any medication (prescription or OTC)you are taking, and your diet.
    • They will do a physical and neurological exam
    • Your provider will most likely do voiding tests and ask about pain related to voiding.
    • They can also do a couple of different procedure to check for IC/BPS
      • Cystoscopy- using a special tool to look into the bladder. This test will also rule out any kind of cancer.
      • Urodynamic Evaluation- this will involve filling the bladder with water through a small catheter. This will measure the bladders pressure as the bladder fills and empties. Patients with IC/BPS the bladder has a small capacity and maybe pain with filling.

    How is IC/BPS TREATED? IC/BPS can be treateed with lifestyle  changes, bladder training, physical therapy, medications, surgery, botox or a combination of any of the above.

    • Diet- People with IC/BPS should try to avoid: alcohol, caffeine, spicy foods and any foods high in acid.
    • Lifestyle- physical therapy, limiting stress
    • Medications- some of the medicine that can be used to treat IC/BPS are: Oral Pentosan Polysulfate, DMSO, Hydroxyzine, Amitriptyline, Heparin
    • Hydrodistention- a procedure usually done under anesthesia to fill the bladder back up to normal size by instilling saline

    Can IC/BPS be CURED? It is possible for IC/BPS Symptoms to come back even if the disease has been in remission for a long time. No one knows what causes the recurrence.  And there is no known guaranteed way to prevent said recurrences. The following can be attempted by the patient to try to prevent recurrence.

    • staying on their medication and treatments even after they are in remission.
    • avoid the foods known to cause a flare up.
    • avoid certain activities or stresses that may make IC/BPS worse.

     

    I hope you have learned a little about Interstitial Cystitis/ Bladder Pain Syndrome. Please feel free to share this for those who think they may be suffering from these conditions.

    -Amber

     

    Resources:

    • http://www.urologyhealth.org/urologic-conditions/interstitial-cystitis/after-treatment
    • https://www.niddk.nih.gov/health-information/urologic-diseases/interstitial-cystitis-painful-bladder-syndrome

     

    But You Look Fine.....

    We've all done it.  We've seen that person get out of the car at the local shopping center while parked in a handicapped spot. And thought, "There's nothing wrong with them, who do they think they are?"  I'll admit it I've thought that. And I think that's the mentality of most. If you can't SEE the disease it's not there. Right?   NO Oh so WRONG!!!! Here's some food for thought.  So if 96% of illnesses are invisible that just leaves 4% that one can outwardly see. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker (U.S. Department of Commerce).  So you can only imagine how that number has increased in the last twenty years with medical advancement.  Chances are someone YOU KNOW has an illness that they are suffering from that you can't see or may not even know about. 

    So what exactly are invisible illnesses? They are conditions that you can not see by just looking at someone. These could be things such as: Anxiety, depression, mental illness, Autism, Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Endometriosis, Interatitial Cystitis, Chrons Disease, EDS, epilepsy. Just to name a few. 

    So how do they hide their disease and how do they feel? Here's my story!

    You may look at me and simply see a healthy-looking, overweight 30 something. However, just by looking at me you would never know the things I suffer from.  You wouldn't know I have disabiling migraines, Systemic Lupus, Insomnia, Fibromyalgia, Interstitial Cystitis, Endometriosis, and Adrenal Inssufiency.  None of these things can be seen outwardly. 

    You wouldn't know that I am almost ALWAYS in pain somewhere. Whether it be my back or my hands or even my feet. Something always hurts even on the good days. You wouldn't know that chances are I didn't sleep well the night before because of said pain. And I'm so tired that it took 15 extra minutes to convince myself to get out bed. Even after taking my medicine 45 min before finally rolling out of bed.  And then I spent another hour getting through the process of showering, hair, makeup and getting dressed because I had to take 4 breaks. And by the time I'm done with all that, I really just want to get back in bed because I'm EXHAUSTED and it's not even 8am.  You won't ever see me cry because I had to cancel plans for the 3rd time with my best friend. Because that is something I hide. You wouldn't know that it rips me apart to have to stay home when everyone is out doing their daily activities. You wouldn't know that grocery shopping is the vain of my existence. And something I have to mentally prepare for because it.....takes....so.....much......energy. And then actually putting the groceries away......that's a whole different story. 

    You will never see my utter frustration with constantly being sick. I'm sick and tired of being sick and tired. Go ahead and think what you will. "She can't really be sick again, can she!?"  "I bet she just doesn't want to work so she says she sick!" Let me answer those questions. Yes, if I actually tell you I'm sick. I'm sick. The rest of the time I hide my illness for fear of being judged. As for just wanting to stay home. NO. I would much rather be in the workplace than on my couch. I didn't go to college for 6 years not to use my degrees. 

    By looking at me, you would never know that I may have had a migraine for three days. And am fighting the constant urge to throw up because of the migraine. You wouldn't know that I might be having a hemiplegic migraine and my hands are going numb, and it's hard to talk. You might see me in public with my shades on and think nasty things about me, none of which are true. I don't have a hangover. And I wasn't beaten up. I simply have a migraine that won't quit. So don't be so quick to judge. 

    To talk to me you still probably wouldn't see any difference in me. That is until the Brain Fog hits. It's a thing!! Much like pregnancy brain or Chemo brain. You probably wouldn't know that I constantly lose my train thought, sometimes in mid sentence. Or that some days I spend a lot of time looking for things that are right in plain site. You will probably notice me hunting for words while speaking. No, I'm not on drugs, or alcohol. I simply have brain fog associated with my invisible illness. Remember it's a real thing..... look it up if you like. 

    By looking at me you wouldn't ever know that often my bladder is on fire and I have to urinate all the time. And I may get up four to five times a night to do. Yes at the ripe ole' age of 31!!   You also wouldn't know that many days out of the month I have severe pain in my belly. Either caused by the Interstitial Cystitis or by Endometriosis!  The pain can be disabling at times. And I would like to cry and lay in the fetal position. But I don't! You also wouldn't know that my chance to carry my own baby is slim to none now due to my invisible illnesses. The one thing I have wanted more than anything my whole life is no longer a possibility. But you can't see that! 

    Another thing you would never see by just looking at this 31yo lady is that the depression can be real. If you suffered from all the things I mentioned above you would probably be depressed too. You probably wouldn't know that there are days when getting out of bed feels pointless. And crying is the only thing that seems to help.  Anxiety is also real. You never know when you get out somewhere if one of these diseases will strike its ugly head. Then what happens? How do you excuse yourself to head for home? Will I make it home safely? Should I bother my working family to come get me? All things you have to worry about because you never know when you could get sick. 

    Any invisible illness can take over your life. And not usually for the good. There are so many struggles. Loss of friendships and family members because they don't understand. Or don't take the time to learn. Loss of wages/job because of being sick. And anyone who says getting disability is Easy is so WRONG. It can take years for people with an "Invisble Illness" to get approved. Because just like you the judge can't see if either. We look fine on the outside.  

    If you take anything away from this please thing before you hurl thoughtless, mean words at people. Try to be less judgemental when you see a young person parked in the handicapped spot. He or she probably needs it or they wouldn't have it. Also, try to be a good friend! And know that even though we may cancel 5 times before we can actually have dinner with you, doesn't mean we don't value your friendship. It just means that we are listening to our bodies. Lastly, remember what your Mama taught you. "If you don't have anything nice to say, don't bother saying anything at all!"

    I hope this encourages others to share the things that no one can see outwardly due to their Invisible Illness. Let the world know what you go through. And others in the same boat know that they are not alone!!

    -Amber