One of my main goals for 2019 is to spend more time in the kitchen. And no not necessarily eating, but cooking as well. So I’ve been looking for and trying new recipes. In fact I made a couple really good dishes recently and thought I would share them and the stories behind them with you.Read More
When a person is dealing with a chronic illness holidays can almost be more work than they are worth. That being said there are ways to make the holidays easier for spoonies and I would like to share a few ways that this can happen. This is not geared toward one condition or another and can be tailored to fit just about any condition.Read More
I had hoped to get my migraine series finished before the end of June, which was migraine awareness month. However, sadly I spent most of the last week of June in the hospital with a MIGRAINE. I had dealt with it for over ten days and finally waved the white flag, cried uncle and went to the hospital. I was hoping that I would be able to break the migraine by just getting medications in the ER. But no luck, I had to be admitted for four days. So finishing this treatment section of the migraine series seems appropriate, as I spent the last couple weeks living in this phase of a migraine. So how do you treat a migraine??? Well, that's really a hard question to answer. What works for me may not work for you and vice versa. And I have found it to be more a case of trial and error of what might work. I have tried SO MANY medications and treatment options over the years. Even thought I have been on this migraine journey for over 15 years I am not totally sure that I have found the perfect mix yet. In the early years I only had migraines periodically, it wasn't until the last three years that they have really become debilitating. I also didn't start having the hemiplegic (stroke like) migraines until 2016. One of the big things I can't stress enough when you are on the search for the best treatment for your migraines is to keep a journal of your symptoms, what you did, what you ate etc on the day of your headaches so you can see if there is something recurring with each migraine. So lets dig in to treatment options.
The most common treatment for migraines are medications. Whether you take over the counter meds, preventative meds or meds for the acute head. Below you will see the each type of medication explained.
- Over the counter (OTC) medications are medications that can be bought without a prescription on the counter at any pharmacy.
- Acute medications are used as soon as a migraine is happening. These are also known as abortive medications.
- Preventative Medications are used on an ongoing or routine bases, in hope that they will prevent or reduce future attacks. These can also be called prophylactic medications.
Over the counter options for acute symptoms include:
- Excedrin Migraine
- Ibuprofen which is also known as Advil and Motrin
- Naproxen which is also known as Aleve
- Aspirin (you need to check with your physician before taking this medication as it is also a blood thinner)
- Acetaminophen which is also known as Tylenol
Examples of prescription drugs you might be given to take for acute (when the headache is happening) symptoms include:
- Triptans are a class of medications that deal with the chemical Serotonin in the brain, which helps to diminish the swelling of the blood vessels that cause the headaches. These drugs are primarily used in the treatment of acute headaches. This method of treatment goes back to the 1950s. Examples: Maxalt & Imitrex.
- DHE 45 became a treatment for migraines in the 1940s. It is only used to treat migraines in the ACUTE stage and should not be used as a preventative medication. This medication is available as an injection, IV drip and nasal spray.
- Ergotamine is a medication that is used for a SPECIFIC kind of headache. It is used to treat vascular and tension headaches. The medication works to narrow the widened blood vessels in the head, which in turn reduces the throbbing effects of vascular headaches. This medication is also used only in treatment of acute headaches.
Examples of medications that are given as preventive or prophylactic prescription medications include:
- Beta blockers (Use caution with these as they can also lower the blood pressure and heart rate) This group of medication is used as a preventative medication to treat migraines. They work to relax and open up blood flow thus reducing the frequency of headaches. Examples: Propanolol or Toprolol.
- Calcium Channel Blockers (Use caution with these as they can lower the heart rate) This group of medication is used because of the way it works, basically the end result is that this group of medications prevent contraction of the muscle wall of the artery. Examples: Procardia or Verapamil
- Antidepressants are often used as a preventative medication for headaches because the tricyclic antidepressants also work to treat chronic pain. Thus they work well for migraines. Example: Elavil
- Anticonvulsants this group of medication work to calm the hyperactivity in the brain. Example: Depakote, Topamax, Gabapentin
There are also many other options for migraines. One of the most common is the Complementary & Alternative Medicine. This option includes any medicinal products or practices that are not part of modern medicine. Alternative medicine can be defined by its use an an alternative option to traditional modern medicine. Complementary medicine is used in conjunction with traditional medical treatment. These treatments could be things like: any natural remedies like herbal medications or treatments, vitamins, minerals or any kind of supplements. There are many options of herbal medications, which I have tried, the one I personally had the most luck with was feverfew. Other options would include meditation, yoga, biofeedback, acupuncture, tai-chi. Or even body-based practices like chiropractic adjustments or massage therapy. Like always, before starting any new over the counter medication, herb or supplement. Or any increase in physical activity please check with a dr before doing so!
In addition to medications and alternative or complementary therapy, the U.S. Food and Drug Administration (FDA) has now approved two different nerve stimulators that may be helpful for certain people who have not gotten any relief from all other treatment options. The Cerena Transcranial Magnetic Stimulator is a device that has been approved for anyone over the age of 18 who have migraines that are preceded by an aura. This specific device is help to the back of the head and will deliver a pulse of magnetic energy.
There is also a vagus nerve stimulator that has been approved for use in adults with migraines, as well as those who suffer from episodic cluster headaches. This device is hand-held and is placed over the vagus nerve in the neck and it releases a mild electrical stimulation to reduce pain.
In 2010 Botox, previously primarily known for its use by plastic surgeons, was approved for use with chronic migraines. Currently the FDA has only approved Botox use in those with chronic migraines, which means a person must have 15 or more headache days a month. Research shows that the more frequent the headaches the better the Botox result will be. Botox is given as approximately 30 tiny Injections around the head, the injections are given around pain fibers that are involved in headaches. Botox will enter the nerve endings around the injection site and then blocks the release of chemicals involved in pain. This in turn prevents activations of the pain networks of the brain. Patients who receive Botox can only receive injections every 12 weeks. And it generally takes 3-4 treatments at least to begin to fill the full impact it may have. Botox requires pre-authorization by the insurance company before it can be given. Along with very detailed documentation by the doctor regarding the frequency and duration of your headaches.
In early 2018 the FDA approved the first drug of its kind for migraines. It is said to reduce the number of migraines among those who are prone to migraines. Most of the medications currently used for migraines are used to control the symptoms. The new drug, called Aimovig, is designed to reduce the number of migraines among the population who suffer most frequently. One of the largest studies done during the testing stage showed that the number of migraines dropped from eight to fewer than five. This medication is given as an injection, much like insulin, delivered by a pen-like device. The one big downfall for some is that the medication will cost around $6,900 a year, and insurance coverage is not completely decided at this point!!
I hope each of you enjoyed this series on migraines and that maybe you learned something you didn't know. I know I learned a LOT while doing the research for this series. Migraines are so complex and I could have probably written a five part series or even more. There are so many options of medications available along with many more non-medicinal treatments available, than in years past. And so much research is being done to find the best treatment available for migraines. I didn't cover Botox in much detail and there is a lot of information I could share. If you are interested in learning more about Botox or the new medication Aimovig leave me a comment and let me know. Also, if you have a condition that you would like me to do a series of posts on let me know and I will dig in and start my research. This has been pretty popular so I am looking forward to doing more multi-part series in the future.
* 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.
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.
Amber & Amy
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.
When you are sick and really feeling terrible, there is nothing that can be more irritating than when someone says to you, "At least you don't loo sick!" While they may not mean this as anything but a compliment. In general it is NOT how most with an invisible (chronic) illness will take it. To hear you don't look sick when you have an illness where your body is attacking itself on the inside but can't be seen on the outside is very very frustrating. So much so that fellow Spoonie Christine Miserandino developed a way to explain how we are feeling. Her piece is called The Spoon Theory. If you aren't familiar with this theory you need to be. Christine decided that she needed to find a way to explain how well or poorly she was feeling to her best friend and roommate. Her roommate was the person who went to doctors appts with her, saw her sick and saw her cry. She stated that if she couldn't effectively explain it to this person, how could she explain it to anyone. She thought about it for awhile and decided using spoons would make the most sense. And at this point The Spoon Theory was born. And stated, "At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands."
Christine went on to explain that the difference between a healthy person and someone with a unhealthy person is that someone with a chronic illness has to make a choice and choose what they do or don't do every day! When a normal healthy person does not have to make that choice.
"Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."
Christine goes on to talk about how at the beginning of the day the chronically ill start with X amount of spoons and that's how many you get. No more, no less. And through the day EVERY SINGLE ACTIVITY that you do costs you X amount of spoon. That's everything, including getting dressed, taking a shower, putting on makeup etc. All activities that most would be thinking that are simple and easy things that shouldn't be a problem. However, activities like that are the ones most people will take for granted and do without a second thought. That being said, those who have a chronic illness may have to forgo those activities, or others, like drying their hair and putting on makeup (simple as they may seem). Those things may definitely be skipped if there is an activity later in the day that they know will take more spoons and they really want to take part in or attend. Even if we may be able to do those simple tasks like those what were mentioned above it make take use 5 times as long as it used to. Simply because we don't have the energy to get them all done at once like we once did and may require frequent breaks through the getting ready process so that we don't risk exhaustion before whatever it is we are doing! Those of us with chronic illness have to do what we can to conserve spoons so we can make it through the day.
Let me give you an idea of what a work day looked like for me before and after my Lupus diagnosis.When I was working as an RN, right out of school before I was my first life changing diagnosis, my mornings were very different then they are now! 7-10 years ago every morning I would get up and get dressed, do the normal tasks like deodorant and brushing my teeth as well as doing my hair, which could consist of being in a pony tail/bun or down and curling it! I would put on my makeup almost every day and eat breakfast at home before leaving. I would always leave for work with enough time that I could ensure that I would arrive on the nursing floor a full 30 minutes before I started my shift so I could fully prepare for my day. I would work a full 12.5 hour shift, most of which I was on my feet and going, going, going for the whole shift. I would sit very little usually only to chart and long enough to eat a quick lunch maybe 15 minutes, if I was lucky. At the end of my day I would arrive in the room where we gave report, right on time because I was usually busy until it was time to give report and leave. Once I left work, I would often go out to dinner or even out to the bar for a fun night out after work. I could easily survive on 5-6 hours of sleep and do okay. During part of that time I was also in school for my bachelors degree, so I also had to work on studying, writing papers and going to classes online and on the computer, as well as spending time in lab or clinical.
The previous scenario is so different then what it's like now (most recently). When I was working as a hospice nurse in the field last year, I would wake up maybe 20 minutes before I had to leave, if I was lucky! Leaving just enough time to drink a yogurt shake or maybe something as i was driving, jump in some clothes, put on deodorant and perfume and brush my teeth. (Much different than the way I did before) Most days I would work anywhere from 4-8 hours a day depending on what my day was like, and how far i had to drive. By the time I got home I was in so much pain and so stiff I could hardly get out of my car and walk into my house. And most days I would shower and fall into bed. Even if i has only worked 4 hours. And this is where I would stay until the next day. I wouldn't sleep that whole time most days, but I didn't have energy to do anything else. And my spoons were totally and completely gone. There was no more meeting with friends for dinner after work or going out for drinks on a work night. And most nights I require no less then 8 hours of sleep, more likely 10-12 hours. And many times on my days off I would spend resting because I was tired from the day before and knew I need to rest up for the next work day.
When I came across Christine's Spoon Theory, I found it to be the perfect way to explain my days and how I pick and choose what I do and don't do. Over the last 6 years I have used this very theory many many times to explain what is going on with me and why I may cancel plans from time to time. When anyone new comes into my life I often times will send this to them so they can get a bit of an idea of what I have to deal with on a daily basis. And I suggest that all of you do the same. This works for all chronic issues. Not just Lupus and Fibromyalgia. It can be used to explain the energy conservation requirement of any condition that causes chronic pain and chronic illness. So since I could not show you Christine's complete theory, I want to provide the link for you. The Spoon Theory in its entirety can be found by clicking that link. I recommend all of you read it even if you have read it before. I also recommend that you keep the link so you can send the theory to any friends or family who you feel needs a better understanding of what you deal with all day every day. I also hope that those who you share this with will have a little bit better understanding. And will maybe refrain from using those awful 5 words we all hate so much to hear, "But you don't look sick!" If you are a friend or family member of someone with a chronic illness please take time and read Christine's whole piece. It would honestly mean so much to the person in your life who is a Spoonie!!
Please share this post with anyone you might know who is dealing with a chronic illness either as the chronically ill, or as family or friend of the chronically ill, and you feel that they could benefit from it!
I also want to send a shout out to Christine Miserandino for allowing me to quote her writing in this post!
Sadly over the last three years I have spent many days and nights in the hospital. I even took a trip to Mayo for a week and have had a couple overnight trips for treatment. That being said I have what I need in my bag for the hospital down to a science. In fact when I get home from the hospital, I wash the dirty things in the bag and repack it. That way it's always ready and I don't have to rely on my family to try and pack it in a rush. So let's just jump right into what's in my hospital bag. 1. Pajamas/yoga pants- I always have at least one or two full sets of pajamas packed in my bag. Whether I am able to wear them or not I want to have them. And I generally have sets for summer and winter. Because you never know if you will be in a room with a roommate who keeps it at 60 or 80 degree. I also keep usually two sets of yoga type pants and a pair of shorts in the bag, in case I'm on a ward where I can't wear anything but a gown. You just have to have bottoms on, no matter what kind. For me personally I don't feel comfortable wearing only a gown.
2. T-shirts/Tank Tops- I always pack a T-shirt or two (usually short sleeved, maybe one long sleeve) & several tank tops in case they will let me wear them. Most of the time I am on a floor with a heart monitor so I have to wear a gown so they can reach it. But I always keep a couple just in case because to me they are much more comfortable than those darn hospital gowns.
3.Underwear & Bras - I will usually pack at least 6 days worth of underwear because that is the longest I have been in the hospital to date. As far as bras go if I think there is a possibility I will be admitted by my PCP, or that the ER will decide to admit me I will go in with a sports bra on! Then I generally try to pack 1-2 sports bras in my bag. That way I can change every couple days. Sadly, I have to wear a bra. It's uncomfortable feeling for me not to and can be awkward for the nurses if I don't!
4. Personal Care Items- I have a bag within my bag that keeps all of my personal care items in them. I always have deodorant, body soap, shampoo, lotion, toothpaste, toothbrush, and a hair brush!! I also keep some hair ties, and headbands in my bag as well so I don't have to deal with my hair in my face.
5. Slippers or Flip-flops- This isn't so much a comfort thing for me as much as a way to prevent walking on dirty hospital floor. Hospital/Hotel floors aren't really known for being clean. So I never leave my bed without something on my feet. And most hospitals won't let you walk in the room barefoot due to bare feet being a fall risk! I also always try to shower in flip flops! But obviously that's just a preference for me, and may not be something you need on your list!
6. Entertainment - Most of the time when I'm in the hospital I am in with a Migraine. That being said the TV is often to loud and to bright for me. So I always have my phone, and usually my IPad. Because I have those things with me I always have chargers for both and earbuds. There is also usually a book in my bag in case I'm in with something besides a migraine and feel like reading.
7. Comfort- I've been in the hospital enough times to know that I will find little comfort in their beds. Because of that I always have my own pillow and a small fleece blanket to help me get more comfortable so I can rest more easily.
8. Miscellaneous Items- These are items I don't always have with me for each admission, but are on my list for packing a bag. My CPAP generally doesn't come with me. But if you are in a hospital the expects you to, you should make sure that it is on your list of items to take. This may seem funny but I HATE wearing socks. So I generally keep a pair or two in my bag just in case I have a roommate that keeps the trim like an iceberg! A pair of cheap sunglasses are almost always in my purse or my hospital bag. This is because I generally end up in the hospital with a migraine. And I'm very light sensitive. So I try to always keep a pair in my bag. The last thing I keep in my bag is an old Walmart bag or unused trash bag, to put my dirty clothes in. Finally, one of the most important things I MUST have is an eye mask!
These are only items that I pack for me. Obvious everyone is going to have a different list for themselves. While preparing to write this I polled my friends who also have recently spent time in the hospital for their must haves. This is their list.
9. My fellow spoonies MUST haves: chapstick, Makeup wipes, fill-it-in book, crossword puzzle books, ink pen, maxi pads/tampons (just in case it sneaks up on you while you are in the hospital), cottonel wipes, cup for dentures, glasses and glasses case, contact solution and case if you wear contacts, coloring book and something to color with, a heating pad or rice bag that can be heated up. One friend also said if she is feeling like eating she will sometimes pack some snacks that won't need to be refrigerated.
I hope my sharing this list will help you to figure out what you need in your bag. Even if you don't keep one packed I would highly make a list of the things you would put in your bag should you need one. If you do choose to take some comfort items from home it will make you feel a little less like you are in a sterile environment. Having a list will also make it easier for your family if they should ever have to pack a bag for you. To be honest that was a big reason why I started keeping a bag always packed. It was just to difficult to tell my family exactly where things were that I wanted. And this way the don't have to be digging through my stuff!! That being said, packing a bag or making a list of what you would want in said bag, will make being admitted much less stressful or scary in the future!
Special Thanks to Missy and Christall for sharing your personal lists with me!!
Hello world! This one is for YOU!! No matter how hard we try there are always going to be some level of judgement within. But most of us keep that judgement to ourselves, and don't stare people down or make comments when we think they shouldn't be using that wheelchair, or parking in a handicapped spot or even just wearing a mask out in public. That being said many people don't keep those judgments to them self and they make the rudest comments. Today this post is directed to those who can't keep their judgments to themselves.
Yes, I know what you are thinking when you see me get out of the car that I just parked in a handicap spot. You look me up and down and then proceed to think, "There's nothing wrong with her why would she park there!" And some will even glare or make comments. By looking at me all you see is what looks like a healthy lady in her thirties who's only issue is that she is overweight! However, you CAN'T see my Illness! It's INVISIBLE!! Meaning you may not be able to tell I have anything wrong by seeing me or even talking with me, unless I'm wearing a mask, or limping or even wearing sunglasses inside or using a cane or wheelchair. Otherwise there is no physical manifestation you will see!
You don't know that even getting out of bed is hard. Getting dressed and ready is exhausting. And could take several hours just to get to point of walking out the door. Due to needing to take multiple periods of rest! By the time we finally make it to wherever we are going, whether it be a restaurant or a place to shop, we have no energy or spoons left AT ALL! You can't see that it's hard to breath, and my heart is beating way faster than it should. You can't see the HORRIBLE migraine I am suffering from. Or know that the lights in the store or from the sun are making my head hurt that much worse. Or that the urge to vomit from said headache gets stronger with every step and movement!! But yet you continue to whisper and make comments and stare me down.
You don't know that I woke up with a pain level of 8 and even after taking my prescribed dose of medication. I am still at a 7. You can't see that every step is agony and every time I have to grab the cart to push it in the grocery store, that pain radiates through all my fingers, hands and up my arm! You can't see the pain that is in my back and pulsating with every movement. Yet you still continue to stare and make comments and judgements.
You also don't understand pain meds. You don't understand that we would all rather do anything else than take pain meds. And NO most of us are not addicts and should not be treated like we are. If 99% of you were in our shoes you couldn't do half of what we do. Because we have gotten used to the pain and know that I can't stay home in bed just because I hurt. Because, if I did that I would never leave the house!!
I love when you see my mask and you turn around and go the other way because you are fearful for CATCHING WHAT I HAVE. Well, in this case the JOKES ON YOU!! The situation is actually the opposite. I wear this mask to prevent CATCHING what YOU have! You don't know and can't see it, but my immune system is to busy fighting off my body to worry about fighting off any germs i in contact with. What you may think is a just a small cold for you, could potentially put me in the hospital or even kill me! So I have to protect myself from you and the world!
And you will never understand what it's like to have to stay in your home for weeks on end because the flu is running rampant in your area! What it's like when you see people on social media and wish you could be out having fun. While instead you are stuck in your home because the flu for someone like me with Lupus could KILL ME!
The public will never understand the invisible illnesses. In general people will forever think that if there is no outward sign of illness, or pain (like a cast on a leg or a person on oxygen) they will most like assume that you are fine.....JUST LAZY! Which couldn't be further from the truth. That has been the thought process for many many years and it will be hard to change. In general, the public doesn't understand any illness that they can't see. And we understand that. What we don't understand is the need to make hateful and judgemental statements. How does that help in any situation?!?
I'm going to wrap this up with a few statistics for you regarding the invisible illness. And give you something to think about. Approximately 10% of Americans have a medical condition that could be defined as an invisible disability. And 96% of people with chronic medical issues, live with a condition which is INVISIBLE!! And most of those people don't use a cane or assistive device that would show they are ill.
Perhaps after reading this someone will think before they judge! Hopefully, they will hold their tongue before making a rude and hateful comment. I know that's wishful thinking, but I would hope that seeing this Information would make them think. If this reaches just ONE person who will change their thoughts about people using handicap spots or a wheelchair than I've done my job!!
Even though I've been diagnosed with Lupus, Fibromyalgia, and Endometriosis there are still things I come across that I wish someone would have told me about. You all know what I'm talking about, those little "tricks of the trade" that people who have been dealing with that condition for awhile and no one shares with the newbie. So after having a discussion with several people across several different groups, I have complied a list of things by asking others who have autoimmune illnesses. The list we complied could apply to anyone, not just me, but could change the way you do or look at things!!
-I wish someone would have been honest with me and told me that it may take MONTHS or YEARS to accept the changes brought forth by the illness. If you can ever truly accept the changes.
-I wish someone would have made it more clear that this is not something you can adjust to overnight! It may take a lifetime to fully adjust to the changes in your body, your energy level and your fatigue.
-I wish someone would have mentioned the depression that happens as you start to really accept the changes in your life is real. As well as made it clear that is is okay for you to feel that way! And suggested early on that seeing a counselor might be a good idea.
-I wish someone would have prepared me for the fact that there is a very good chance that you won't make a LOT of the plans you schedule, due to your health. Even if it was something you planned and were looking forward to. You just may not make it!! And in most cases your friends will never understand why you can't just get up and go.
-I wish someone would have prepared me for the fact that not all Rheumatologist's (or other drs for that matter) know much about Lupus or the way to treat it. And most even if they are familiar may not know the newest meds or what's really best for each individual patient.
-I wish someone would have reminded me that no one will understand what is happening to me, and no one will stand up for me like I will. I MUST ADVOCATE FOR MYSELF AT ALL TIMES!!! (As do each of you reading this!)
-I wish someone would have told me that anytime I go to the dr or the ER with a pain related issue that I am most likely going to be treated like a DRUG SEEKER! Whether I am or not. The drs don't care. They just go off what they see before even talking to the patient!!!
-It would have been great to know that many of my friends and some of my family would turn their back on me and simply walk away! Because they don't understand the changes in my life or just simply can't handle it.
-I wish someone would have prepared me for the pain I would feel, not only from Lupus & Fibromyalgia, but also from Interstitial Cystitis and Endometriosis!
-I wish I had been prepared for the fatigue that Lupus brings on. It's not like any fatigue I have felt before. It can honestly be totally disabling.
-I wish someone would have prepared me for the cost (even after insurance) that I will have to deal with and pay out of pocket.
-I wish people understood that exercising and eating better will NOT cure my conditions.
-I wish someone would have prepared me for how hard it is to keep a full time job doing the things you like once you are diagnosed with a life changing disease!
-I wish someone would have prepared me for all the dumb questions I get based on my conditions. I know people mean well, but their delivery could definitely be worked on.
- I wish someone would have prepared me for all the conditions that would come along after lupus. I had no idea that once Lupus came into my life that he would then invite all of his unwanted friend.
This is just a list of things that was combined from a poll Results from a questionnaire in an autoimmune support group, along with my own thoughts. I know many of you feel this way and could contribute many more points to the list. I hope you enjoyed reading this and it made you think about all the things that you have to deal with. Please feel free to share this with friends, family or others who suffer with chronic illness. And always remember YOU ARE NEVER ALONE IN YOUR JOURNEY!! There are always many of us out there willing to help and talk you through any struggle!!
So you've made plans and were genuinely excited to do whatever it was you planned. But the day comes and you feel like CRAP. You are hurting and battling whatever ailment is most current. And you know there is no way you can make it to said plans. But how do you get out of it without the other person hating you or dealing with the other person judging you? This is a constant battle I think all spoonies fight. Do we follow through with said plans and then spend a week in bed or do we cancel and then deal with the feelings that come from that?!? It's hard. And it seems like you (or at least I always feel like I am) are always letting someone down. So how do you deal with the situation? Over the years this is something I've gone back and forth with. Do I make up an excuse as to why I can't go so it doesn't seem like I'm sick AGAIN?!? Or am I honest, and tell the person how poorly I am feeling and why I really can't come?!? I'll be honest, I've done both. And neither seem to make it any easier to deal with constantly having to cancel plans. But in the long run I feel that it's better to just be honest. If you aren't feeling well just tell your friend/family what's going on. Then it's on them. If they want to be mean and hateful about you cancelling plans that's their issue not yours. You can't force them to believe that you are sick.
I've had it go both ways when I was honest and told my friend I was too sick to make our plans. I've had friends be really understanding and offer to bring me soup or ice cream or something I might need. And then I've had "friends" interrogate me about being sick. Asking for signs and symptoms and what I've taken to feel better etc. I'm sorry did you become my doctor? These are not things you need to know. This is you being nosey and testing me to see just how sick I am. And I have nothing to prove to you!! If you as a friend can't believe me for what I say I don't need you in my life.
That's what it comes down to honestly! If you have friends that can't take your word and don't believe when you say you are too ill to leave the house, you don't need them in your life. Yes, we often have more Infections and have to cancel plans more than most people. But this is not a part of our life we enjoy. If you think we enjoy sitting at home and never getting to go out and have fun you are sadly mistaken. We crave people interaction and having fun just like anyone else. We just don't get to do as much as we would like. To an extent we are a prisoner to our own bodies. We can't control what happens from day to day. We just have to deal with what we are thrown and move on. And if that involves having less friends because they can't understand the life of a person with a chronic illness then that is just the way it has to be.
We have to treasure the friendships with those who care to take the time to understand our lives. Those are the people who we need around us. People who will support us and lift us up even if we have to cancel plans. It sucks enough having to live life with all the illnesses and drs visits that we have. We shouldn't be questioned and treated poorly when we have to cancel plans. If you aren't a spoonie but have friends who are please remember that we don't enjoy cancelling plans and having to stay home. So don't make us feel even worse by treating us poorly because we have to cancel plans!
Friendship and chronic illness is hard. And it makes me sad to think about the people who have walked out of my life simply because I am sick. People who I loved like family who decided they couldn't handle my illness. Which seems crazy to me because they are NOT dealing with my illness I am. Yes, things change! I may not want to go out to dinner or to get drinks as often but that doesn't me that I as a person have changed. I am still the same person who you fell in friendship love with, except my body is not healthy. As many friends as I've Lost, I have also gained some of the best friends of my life in the past 5 years. Fellow spoonies who understand what I go through in a week. As well as non-spoonies who are kind and compassionate and understanding. For all the people who stand by me on a daily basis I am so thankful!! I can never express with words how thankful I am to have these people in my life. They help get me through every day and help me to keep a positive outlook. While also being there to listen when I need to vent!! Friendship can be hard but is so worth the fight in the long run.
It’s true once you’re diagnosed with a chronic illness or a multitude of chronic illnesses your life changes. Not just simply Your Health either. Your social changes dramatically. It seems like your friends start dropping like flies. Some can’t stand the sight or the thought of you being chronically ill. While others can’t be bothered with your "flakiness," and don’t understand why you can’t make plans in advance or why you will cancel at the last minute. But with a chronic illness those things are just part of it. I may feel great today and the idea of a concert or a night out in three weeks sounds fantastic, but there is no way for me to know how I will feel that day! And it’s not that I am being flaky! I just don’t know what my crazy body will do! Over the years since diagnosis I, like many just like me, have lost friends. Not all at once. But one by one. People I considered my best friends or thought I would be life long friends with just walked away for reasons unknown or because they couldn’t handle what’s was going on in my life. I get it. It’s hard to see someone change so much and have no control of what their body will do next. The hardest part of all that for me is that these were the people I neded the most. The people who I leaned on when times were tough.
I decided to take a survey of a support group on Facebook. I asked them how many of them still have more than three friends from the years pre-diagnosis. Of the 13 who responded only TWO said that this was still the case. The other 11 stated that they no longer have have three or more friends prior to diagnosis. And the following comments were left:
-It's true though, it becomes so hard. Although I've learned it isn't all to do with the Lupus anymore. Now I'm *that* friend that is busy every day and every weekend and can't find time to eat lunch with friends. -My husband is my best friend, and literally my only close friend. I tend to lose touch with friends because I'm "flaky" when it comes to plans thanks to Lupus. We don't really fight, just people tend to stop making plans that will likely fall through. I don't know what I would do without my friends, people who have known me since college, we're talking 30 years. They've been with me through everything and now this. -I have 2 very close friends and some acquaintances. I generally am with my family only and only 1 of my 2 friends. I cannot make plans that are long term because I guarantee that I will be there. My body does not afford me that luxury. I have lost friends due to this. It is difficult and can be lonely. I am so thankful for my family otherwise I would be alone a great deal. I cannot drive anymore so that is further isolating. Chronic diseases have taken a great deal of my social life since I can't drive and make long-term plans and often cancel plans that I have made. I have multiple autoimmune disorders as do many of us and this makes it even more difficult. -My really close friends are my husband, my sister in law and a lady that I met on FB after I was diagnosed... I don't have any friends that I am still close to from before I was diagnosed, because they couldn't handle my being sick all the time... 😔 -My closest friends have came after my diagnosis. People that I thought were my best friends before lupus have turned out not to be suck great friends. I have a few that I still talk too, but even with them I feel super guilty when I either won’t make plans or have to cancel :(
I do consider myself lucky however as I do have a couple of really awesome friends here locally who are so good to me. They come and visit me in hospital, they check in on me routinely. And even spend their time taking me to drs appointments, Infusion’s, and spending hours in the ER with me! I can’t thank them enough. However, some of my best friends are people who I’ve met through my support group!! Not only are they great people but they totally understand what I am going through and don’t make me feel bad for it! I may never get the chance to meet them in person but I will be forever grateful for their friendship.
So I guess the takeaway in this is that sadly most people don’t understand chronic illness or don’t want to take the time to. People also will often walk away when things get tough. It seems it is just human nature. Not to generalize but I’ve seen it happen too many times as a nurse. People get sick and their friends and family don’t know how to deal with it. So for them it’s easier to just walk away then it is to deal. I wish it wasn’t that way but it just seems to be that way. I hope for you this is not something you experience. But if it is know you are not alone. And there are a ton of support groups where you can not only find support but friendship in those who understand you and your Life.
October is Dysautonomia Awareness Month. What is Dysautonomia (can also be called Autonomic Dysfunction) you might be asking?? If you look it up you can find all kinds of information. According to Dysautonomia International, dysautonomia is a very broad term that causes a some sort of malfunction of the Autonomic Nervous System(ANS). Let me pause here and explain what what the AND does so you can have a better idea of what problems could arise. The ANS Controls the body functions that would be considered “automatic.” So things we can’t actually control ourself. Things like our heart rate, blood pressure, digestion of food, constriction and dilation of the pupils, kidney function, and our body temperature. Anyone who has Dysautonomia may have trouble regulating the above. So their blood pressure and heart rate may fluctuate and could potentially cause fainting, lightheaded, malnutrition or even death. If I were to ask 10 people if they heard of Dysautonomia, I would guess it would be less than 5. That being said Dysautonomia is far from rare. It is said that over 70 MILLION people world wide live with this in some form. This condition is not gender or race specific. Anyone of any race, gender or age can be impacted. Sadly, like many conditions that we apoonies have there is no cure. However, research is being funded to research and hopefully develop new and better treatments, and hopefully someday a cure. Sadly even though so many people are impacted by this condition, just like many spoonie conditions, it may take years to be diagnosed. Simply because of lack of awareness not only among the public but also within the medical profession
Dysautonomia will generally involves failure of the sympathetic or parasympathetic systems. Causing excessive or even overactive ANS actions. Dysautonomia can be localized leading to reflex sympathetic dystrophy. Or more ge realized, causing pure autonomic failure. It can also be acute in action and therefore reversible , like Guillain- Barre. Or progressive and chronic like diabetes and alcoholism. Being that it’s a very complicated condition it can also happen as a primary condition, or along side with degenerative neurological conditions like Parkinson’s. Predominant signs of dysautonomia caused by sympathetic failure are impotence in men, and a drop in blood pressure when standing!! On the other hand if the patient is experiencing excessive sympathetic activity may have or show high blood pressure and:or a fast heart rate!! Primary dysautonomia is usually inherited or due to some sore of a degenerative disease, while secondary dysautonomias usually results from another condition or injury.
So we’ve talked about who can be effected by Dysautonomia/Autonomic Dysfunction acute vs chronic conditions. And what those conditions might look like. Now let’s look at signs and symptoms.
Autonomic Dysfunction have the potential to affect only a small part of the ANS or the entire ANS. Symptoms may vary depending on how much of the ANS is affected and if there are any nerve disorders.
Generic Signs and symptoms of Dysautonomia: dizziness and fainting upon standing up, (aka orthostatic hypotension), an inability to alter heart rate with exercise, or exercise intolerance. sweating abnormalities, which could alternate between sweating too much and not sweating enough, digestive difficulties, such as a loss of appetite, bloating, diarrhea, constipation, or difficulty swallowing, urinary problems, such as difficulty starting urination, incontinence, and incomplete emptying of the bladder, sexual problems in men, such as difficulty with ejaculation or maintaining an erection, sexual problems in women, such as vaginal dryness or difficulty having an orgasm, loss of vision problems, such as blurry vision or an inability of the pupils to react to light quickly.
Anyone can experience any or all or none of these symptoms depending on what the cause. Symptoms such as tremor or muscle weakness may occur due to certain types of autonomic dysfunction.
There are three main types of Dysautonomia:
Neuro Cardiogenic Syncope (NCS) is the most common kind of dysautonomia. It is estimated that tens of MILLIONS of people are affected worldwide. The main symptoms a person with this condition might feel would be: fainting (or syncope), which may happen once or it could be happening frequent enough that it would interfere with a persons daily life!
Naturally gravity will pull blood downward but a healthy ANS adjusts the heartbeat and muscle tightness to prevent blood from pooling in the feet and legs and makes sure blood flow returns to the brain. Most treatments are aimed to reduce symptoms.
For people who faint they should avoid the following triggers.
-dehydration, stress, alcohol, very warm areas, tight clothes.
Meds like beta blockers and pacemakers are often used to treat people with severe NCS.
Postural OrthostaticTachycardia Syndrome: This conditions is also known as POTS and affects between 1 and 3 million people in the US alone. Approximately 80% of those 1-3 million are female. IT COMMONLY AFFECTS PEOPLE WHO ALSO HAVE AN AUTOIMMUNE CONDITION!!!!!
Symptoms can include: lightheadedness and fainting, tachycardia, or abnormally fast heart rate, chest pains, shortness of breath, stomach upset, shaking, becoming easily exhausted by exercise, over-sensitivity to temperatures
POTS is usually a secondary dysautonomia. Research has found high levels of auto-immune markers in people with the condition, and generally patients with POTS are also more likely than the general population to have an autoimmune disorder, such as multiple sclerosis (MS) or lupus!
Apart from people who have POTs having auto-immune factors, other conditions that have been linked to POTS or POTS-like symptoms include: some genetic disorders or abnormalities, diabetes, Ehlers-Danlos Syndrome, a collagen protein disorder than can lead to joint hypermobility and "stretchy" veins, infections such as Epstein-Barr virus, Lyme disease, extra-pulmonary mycoplasma pneumonia, and hepatitis C, toxicity from alcoholism, chemotherapy, and heavy metal poisoning, trauma, pregnancy, or surgery
Research for the causes of POTS is continuous . Some scientists believe it might be due to a genetic mutation, while others think it is an autoimmune disorder.
Lastly, (for the purpose of this post)
Multiple system atrophy- Multiple system atrophy (MSA) is less common than POTS and NCS. One of the big difference in this conditions and the others discussed is that It is more likely around the age of 55 years. Even though it is less common MSA is estimated to affect between 2 and 5 people in every 100,000. It is oftenhard to diagnose because it is often mistaken for Parkinson's disease because the early symptoms are similar. In the brains of people with MSA, causes certain regions slowly break down, in particular the areas of the cerebellum, basal ganglia, and brain stem. The break down in those areas leads to motor difficulties, speech issues, balance problems, poor blood pressure, and problems with bladder control.
MSA has not been found to be hereditary or contagious, and it is not related to MS. Researchers know very very little about what may cause MSA. As a result of not knowing the cause, there is no cure and no treatment to its slow progression. Treatment can, however, manage specific symptoms through lifestyle changes and medications.
As you can see Dysautonomia is very complicated and can impact many parts of the body from the heart to the brain. While some of the conditions that fall under this umbrella are well known with good treatment options. Others, mainly MSA is very unknown and there is no cure or treatment. Especially important to us is the research of POTS as is directly related to autoimmune like lupus. And many people with Lupus end up having POTS. Like many other conditions we need to do more research and find good treatment options for all these conditions!! References:
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!
When you read the words social isolation what is the first thing you think of? Is it Tom Hanks being stuck on a deserted island and resorting to talking a volleyball to not go nuts? Is it those poor old people who live by themselves and have no friends or family to ever come see them? According to free dictionary.com - social isolation is the process of separating, or the state of being alone. So this could be taken in several different ways. Anyone can suffer from social isolation. When you are chronically ill you often suffer from many kinds of isolation. You are feeling isolated from the world because you don’t leave the house often due to not feeling well and for fear of getting sick. You may also feel religious isolation because you can no longer regularly attend church like you once did. And you feel like you are isolated from your church family. Probably the most common type or feeling of isolation is the feeling of isolation from your friends and family. Also known as social isolation. Due to the fact that you no longer feel like doing the things you used to and you often times end up cancelling plans. And once you start cancelling plans much of the time people will stop asking you to do things. Because they just assume you’ll say no. And possibly because they assume you just don’t want to spend time with them when that’s so very far from the truth.
“Belonging” is a complex social concept, relating to people, places, and things. It is fundamental to our emotional well-being, helps define us, and keeps us connected. Social isolation, on the other hand, is when you distance yourself, physically, psychologically, or both, from your network of needed relationships.When you have a chronic illness, isolation can have unforeseen consequences, including worsening symptoms, unexpected health crises, hospitalization, loss of interest in activities, and decreased levels of energy. Anyone living with a long-term health condition is at risk for social isolation.” Upwell.com
I asked the members of Lupie Groupies (the Facebook support group I am administrator of) about their thoughts and feelings on isolation. Below are what they had to say. This fellow spoonie said “The only time I feel the isolation is when I'm feeling better. Otherwise to be honest I'm just to sick to care. If I am lonely or bored it means I'm improving ( which hasn't happened in awhile).” Which made me think. She is so right. It’s when I feel better that I start noticing my feelings of isolation because I feel like getting out of the house and doing things. Whereas when I’m sick the last thing I’m thinking about is leaving the house to hang out with friends.”
Kim had this to say “I too generally feel more isolated when I am feeling better. However, these past few weeks have been the High Holy Days for our Faith and I have not been able to participate either because I have been too weak or in the hospital. This is really hard on me as my faith is very important me. I have not been to services in a while because of my fatigue and pain. These issues just aren't going away either. I also don't see many people on a regular basis either due to illness except family. When I am doing better this can be upsetting at times. I am an outgoing person with a heart for people. The friends I have do which are few have been my friends for 30 years and we are more family now than anything. They have stuck but others have not because I cannot be there to go out to lunch or just hang out. I cannot say with any certainty that I will available for them. My body doesn't allow that.” She touched on many of the types of isolation I talked about up above. And I appreciate her openness and willingness to share.
Elizabeth had this to say, “I've been fortunate to have a long stretch of time that I was doing very well and was able to do things with a lot of people. Now I'm falling apart again, Benlysta stopped working, I HURT all the time, etc. I've had to cancel so many plans that I've had for quite some time and any time I allow myself to think about it I start crying. The internet is good for kind of talking with people, but on the other hand it sometimes hurts to look at Facebook and see life going on without you. And they should live their lives, I get that, but when living my life equals sitting around in pain it's rough. So yes, social isolation for me is the worst right after a feeling great period because I'm having to say no to so many things I enjoy and then watch others have fun without me.” She makes a great point about the internet. It’s a great tool for finding support groups and friends suffering with similar conditions. And finding people to talk to who share your feelings. However, it can also be a negative experience when you see all the fun things and vacations and such that your friends are doing and you aren’t able to.
There are ways to combat feelings of social isolation. Upwell.com have five things that can be done to combat those feelings. They are listed below.
Five ways to keep social isolation from taking over your life
1. Do your research. People often struggle with what they don’t know. Invest time in learning about your illness, symptoms, and treatment options so you do not fall prey to the emotional difficulties of illness, including the desire to be alone. By being proactive, you can understand triggers and keep isolation from taking over your life.
2. Participate in e-social activities. We are blessed to live in an age where social networks make it easy to reach out to others. These are especially helpful when illness and pain prevent us from leaving our homes. Many different e-social activities, including email and instant messaging, give you an opportunity to stay connected daily. It does not matter whether you are reaching out to friends, family, or online acquaintances; the important thing is that you are connecting and not struggling alone.
3. Join a real life support group. Real life support groups are a great place for the chronically ill and isolated. They are a resource for information and emotional support, and they offer an opportunity to vent to people who understand. They are also an excuse to get out in the world. To find a local support group, Google a national organization for your condition, and then locate links on the page related to support groups or a local chapter. For example, the Arthritis Foundation has a local chapter search where you can find all the resources for your area, including real life support groups. Or, you can try the U.S. Department of Health and Human Services' support group page.
4. Take part in the real world. There will be times when you struggle to take part in the real world—whether it is spending time with loved ones or focusing on your career perspectives. Participating in the real world keeps you from becoming isolated. It also keeps you enjoying life, making memories, and feeling positive in a life that isn’t necessarily easy. Let others know you can participate, and join in all the activities you reasonably can handle. Volunteer, join a book club, or meet a friend for coffee or lunch at least once a week.
5. Get comfortable with being alone. While it is important to have a network of people to relate to, there will be times when life requires you to be alone or when you simply want to be alone. Get comfortable being on your own. Learn to lead your own life and make your alone time productive and healthy. You can try meditating, writing, or reading to help you deal with isolation when chronic illness is dominating your life.
Social isolation can be something that anyone can deal with. But those with chronic illness are more common to deal with these feelings. One of the ways upwell.com gave to help deal with these feelings is to find a support group. Support groups can provide you with information but they can also be a place to find friends and confidants in those who are dealing with similar conditions. If you don’t have a support group but are interested in finding one let me know and I can help you find one.
You know the question..... We’ve all asked it, and all thought carefully about how to answer. The question is nothing life altering to most and seems simple enough. But to many the answer is FAR from simple. Now you are probably wondering what question I might be speaking of. Well..... the common probably the most common and generic question asked, “How are you?” To most that’s not a big question and gets a simple answer of “Okay,” or “Fine.” But how many of us with a chronic illness ever answer this truthfully? When was the last time you answered and said “I had a really horrible night l, my pain is at a 9, my head is pounding and I think I’m going to lose my breakfast and I’m barely surviving?” Probably never! No one is ever that truthful and no one ever expects that kind of answer. What would you honestly do if someone you hardly knew all laid that on you? This leads me to my topic for this blog. The difference in living and surviving. And how truly different those two things are!! If you were to define living what would say? To me living is just that, being able to go about your “normal” life with little to no pain. Not really thinking about your illness because if is not effecting your daily life. You can come and go as you please and not have to think about your daily spoon use. You can go do the things you enjoy and the drop of a hat with no second thought. Or do nothing at all. But you have the decision because you feel GOOD!!
On the flip side surviving is just that. You are just getting by. You may be working and doing all the things that are required of you but that’s all you are doing. There are no extra events or fun activities because there is no energy. Even the activities that should be simple like showering or doing makeup are to strenuous and must be skipped to save energy for things later in the day. And when you are in survival mode you are definitely thinking about your spoon use!
I asked some of the women in a support group that I help run about their definition of living vs surviving and this is what they had to say!
One fellow Survivor said this “Living is being able to enjoy and do what you love. It is exploring, traveling, dropping everything and with no plan getting in the car and driving for the weekend and exploring back roads and meeting people. Surviving is figuring out if you can drive to your doctors appointment without killing others and not caring if you die. It is living on yogurt and eggo waffles because cooking is to hard. It is knowing the house or apartment is trashed but you can't do anything about it because the friends and family have given up because there is no "getting better." “
Another had this to say, “My husband always tells doctors that I am alive but is not living. I think you can substitute surviving for alive. What he means is I'm breathing, but I have no life beyond my bed. So to us, surviving is just getting through each day, while living is doing all this things I took for granted before I got sick...going out to eat, seeing a movie, going on vacation, watching my son play baseball. The list is endless.”
Both of those are so true. They both do an excellent job of explaining what it means to live versus survive. And how different those two ways of life can be. Living is enjoying life and doing what you want when you want. While surviving is truly finding a way to make it through each task with the end goal of getting back to bed or the couch as quickly as possible.
So what do you do to get through those times when you are just surviving? Those times when people ask how you are and you wish you could really be honest, but instead you just tell them you are doing fine! Here are a few simple tips to get through those times when you feel like you are just simply surviving.
1. Do only the things that are essential! The bathrooms, the vacuuming and dusting can be put off for a few days until you are feeling better. The things like showering, dressing and general activities of daily living are more essential and those tasks should be focused on first.
2. If you have someone available ask for help. If you have a spouse, kids or even coworkers (not always an option I know) who can take over some of the tasks that for you are too hard to do at this time.
3. Rest, Rest, Rest! Take any and every chance you can to rest. Even if you can only take a 15 min power nap to close your eyes and recenter yourself, use that time to so so. If you can schedule in a 2 hour nap then do that. Just rest. Whenever and however you can.
4. Even during the good times make sure that you take time for you. Whether that’s something as simple as a nightly bath by yourself after the kids go to bed. Or something a little more elaborate like a mani/pedi and a massage once a month. Whatever it is is FIND TIME FOR YOU!!
5. Last bit definitely not LEAST. Find someone you can confide in. Someone who understands the daily struggles and will be there for you to lean on emotionally. Whether this is your spouse, your bestie, a counselor or someone you’ve never met but have connected to in an online support group. Whoever it may be, having someone to talk to will really help when you are struggling.
So as you can see there is a definite difference in living versus surviving. This may not be something you’ve ever thought about if you don’t live with a chronic illness that causes you periods of poor health and exhaustion. But it’s a real thing. Yes, technically we are all living but you have to look at quality of life as well. That’s where the term surviving comes into play. At times when you are doing just that. Just simply making it through each day alive. Remember there are groups out there with others going through situations similar to yours and they will be not only great Resources but they can also be a place where great lifelong friendships can be made.
By Amy NoraIt is the never-ending cycle of what many of those with Lupus and other Chronic health conditions struggle with. The financial struggles that people with SLE face can be a challenge on many levels. According to the Lupus Foundation of America, the average lupus patient spends approximately $12,000 annually on treatments; however, many treatments cost several thousand dollars a month or every few months. There is also the problem of loss of income due to the inability to work full time or the need to go on disability. The average total annual breakdown cost per Lupus patient in the United States is $20K.
This is an extraordinary amount of money to the average person or family. There are ways to help soften the financial impact though. First, drug manufacturers offer assistance programs for patients that are not on Medicare, Medicaid, or Tricare. If you are on any of those three programs, it is illegal for them to assist. These programs offer help with the medications that have copay’s of several hundred to several thousand dollar copays. Second, are organizations that have grants or funding available to assist with various costs associated with various conditions or drugs that are not associated with drug manufacturers so they do not fall into the prohibitive statues under the law. The most heard of and known one is the Healthwell Foundation to those in the Lupus community. Third, if you can meet with a financial advisor to work on medical expense planning. This is now just as important as retirement planning for those with chronic medical conditions. This is not Health Savings Accounts, this is not a specific type of account, this is a strategy based off expenses and potential length of ability to work.
There are honest and hard financial discussions that must be had if you have a medium to severe case of SLE. I would encourage you to plan wisely. When those expenses come that none of us can plan for, let us make sure we use what resources we can to lessen the impact as much as possible.
We already have to deal with pills, let’s do what we can about those bills…
Lupus psychosis or Neuropsychiatric Lupus sounds pretty scary right? Well it is. It may also sound pretty far fetched.... That it is not!!!!It is a truly scary condition that someone with lupus can deal with, but others who don't have lupus might have trouble understanding. So what exactly IS LUPUS PSYCHOSIS??? Or Neuropsychiatric Lupus? The American College of Rheumatology (ACR) has identified "19 different ways that lupus can affect nervous system, including the brain. This complication of lupus is known as neuropsychiatric lupus, or NPSLE. Compiled research suggests that as many as 90 percent of adults, adolescents, and children with lupus will at some time experience the devastating effects of NPSLE" According to MedicineNet "Systemic lupus erythematosus can cause inflammation of virtually any tissue of the body. ... When lupus affects the brain, it can lead to headache, seizure, stroke, or psychosis. Psychosis is a serious mental disorder featuring defective thought processes, frequently with delusions or hallucinations." See scary stuff. But we never hear of it!? Is it really that common? No. I've never heard of it, it must just be a couple people here and there? Well..... that's actually not the case. According to National Institute of Health, Neuropsychiatric manifestations are present in two-thirds of the patients with SLE.[system lupus erythematosus]. The most common neuropsychiatric manifestations in SLE are cognitive deficit (49.33%), lupus headache (23.11%; in 57.69% of these patients, tension-type), psychoses (12.00%), seizures (10.67%), and cerebrovascular events (9.78%).. So there you have it. Lupus psychosis is seen in about 12% of those with neuropsychiatric manifestations! Who knew.
Now that we know that this happens way more frequently than we thought let's look at the symptoms of Lupus Psychosis//Neuropsychiatric Lupus(NPSLE). The most common side effects or problems people who live with with Neuropsychiatric Systemic Lupus Erythematosus is cognitive dysfunction. This simply means that they have a hard time concentrating or they have a hard time with reason or problem solving or recalling memories. These symptoms may not seem problematic to the average joe but to a person suffering with them they can disrupt all aspects of life. I can personally tell you. They can affect your work, your ability (or lack thereof) to organize, ability to learn new things, ability to Process visual-spatial things, and language issues. For kids and adolescents the effects of NPSLE is usually on school work.
The most common complication of NPSLE is cognitive dysfunction, meaning difficulty concentrating or reasoning and problems with memory and recall. These symptoms can disrupt all aspects of life, including the ability to plan, work, organize, and learn, visual-spatial processing, and language. For children and adolescents especially, this effect of NPSLE on school performance is a major concern. To make SLE harder for kids and adolescents to deal with because NPSLE occurs often. Usually early in the course of the disease process and in children usually happens with great severity. However, other symptoms can be life-threatening. These including seizure and strokes. These can be major causes of illness and be major causes of changed quality of life or even brain damage and death. At this point there is no point that can gauge if Lupus is affecting your Nervous system. However, we do know that NPSLE can be present even if a persons SLE is inactive in their other organs. Sadly, even though there are medications to treat symptoms of SLE with nervous system involvement, but not ALL PEOPLE with NPSLE will respond to those current medication. And the side effects of these meds can be quite undesirable. We have now looked at the frequency and the symptoms of this condition but I was curious as I'm sure you are as well , if there is a cause. So I did a little more research. And I really I didn't find much that I hadn't already found. According to the National Institute of Health "Psychiatric symptoms in SLE can be functionally independent psychiatric disorders. It can be due to drugs (steroids) used for SLE or secondary to SLE because of its brain involvement, which is termed as neuropsychiatric systemic lupus erythematosus (NPSLE)."
I talked with a couple of people who have suffered with Lupus Psychosis and this is what they told me: Melissa said " I have dealt with lupus psychosis a few times. Both times I ended up being admitted and tested for every illegal drug under the sun because they couldn't figure out what was wrong with me. It was scary I couldn't feed myself, work a phone, or even the tv remote. I couldn't even recognize my family. Then I was having these crazy physcadelic dreams. And I would cry to my parents that the nurses were making me clean hallways of the entire hospital with bleach on my hands and knees. It is definitely a scary ordeal and something I hope to never experience again."
Susan's experience is a little different. She said "I get brain fog often. Sometimes when people are talking I don't understand what they're saying, even though they're speaking English. Then there's the persistent searching for words and forgetting things. It's especially embarrassing when I'm teaching and I know what I want to say but the word won't come out."
Living with a condition with Lupus Psychosis or NPSLE is a difficult one. And it truly Becomes a family affair. Because it affects the persons children, parents, siblings etc. Anyone's life who lives with the person is going to be affecte any at times devestaved by NPSLE. There is so little understanding of Lupus Psychosis and NPSLE that there needs to be an expansion in clinical and research development urgently!!!
Sjogrens...... How many of you know what that word means or is? According to Mayo Clinic, Sjogren's (SHOW-grins) syndrome is a disorder of the immune system which is identified the two most common symptoms: dry eyes and a dry mouth. Sjogren's syndrome is often found in those with other immune system disorders, such as rheumatoid arthritis and lupus. In this blog post we will look at what Sjogrens is, how many are affected, the symptoms and how it is treated. April is Sjogrens awareness month so that's what I want to do. Bring awareness to this condition Although you can develop Sjogren's syndrome at any age, most people are older than 40 at the time of diagnosis. The condition is much more common in women. Treatment focuses on relieving symptoms. It has been estimated that approximately 1 in 272 people will be diagnosed with Sjogrens. That's abou 1 million people in USA. Researches few that there are an estimated 2 million people that have Sjogrens and are undiagnosed. Son experts believe that 1 to 4 million people have the disease worldwide.
In a person who has Sjogrens syndrome, their mucous membranes and moisture-secreting glands of the eyes and mouth are usually affected first. Reaulting in decreased production of tears and saliva. This leading to dry eyes and mouth. Sjögren’s also can affect other parts of the body. Including the skin, joints, lungs, kidneys, blood vessels, digestive organs, and nerves. Symptoms other than dry eyes and mouth can be: dry skin, skin rashes, a chronic dry cough, problems with the thyroid, joint and muscle pain, Vaginal dryness, as well as numbness/tingling in the arms and legs.
At this point the exact cause of Sjögren's syndrome is unknown. However it is thought by many that it may be caused by a combination of two things: genetic predisposition, or exposure to something like a virus or bacteria.
How is Sjogrens diagnosed? There are several different ways that this condition can be diagnosed. Your doctor may order blood tests to check for: they are looking for levels of different types of blood cells. Along with The presence of antibodies common in Sjögren's syndrome. They are also looking for presence of inflammatory conditions or any indication of problems with the liver or kidneys in the blood. The dr may also order eye tests to measure the dryness of the eyes. They also may ordering some imaging to look at the functions of the patients salivary glands. Or maybe a lip biopsy to look for the presence of clusters of inflammatory cells, which would indicate Sjogren's syndrome.
Now that we have looked at the cause, the symptoms and how the condition is diagnosed. Let's look at how the condition can be treated. Treatment for this conditions is based almost primarily on symptoms. There are several different medications that can be prescribed to treat Sjogrens.
The dr may want you to try something that will help increase your production of saliva. Drugs such as pilocarpine (Salagen) and cevimeline (Evoxac) can increase the production of saliva, and sometimes tears. S
Othe medications that could be given toaddress a specific complications that you might develop. If you develop arthritis type symptoms, they might suggest nonsteroidal anti-inflammatory drugs (NSAIDs) or other arthritis medications. Prescription eyedrops can be given if you don't respond to over-the-counter drops. Should you develop a Yeast infection in your mouth, they can be treated with antifungal medications.
Due to the fact that Sjogrens is categorized with other autoimmune conditions. Your dr might decide to treat your symptoms with Hydroxychloroquine (Plaquenil), a drug designed to treat malaria, is often helpful in treating Sjogren's syndrome. Also, any drugs that suppress the immune system, such as methotrexate might also be given.
Help me bring awareness by sharing this blog post with others. So that one day there can be a cure found!
When you hear CVS what do you think? If you are like most you probably think of the big box pharmacy. And you wouldn't be alone in this. That's what most would think. However, if you have CVS or know someone who suffers from it, that is not the first thing that comes to mind. You would probably think of Cyclic Vomiting Syndrome. What is that you ask!? We will discuss that in today's post. We will look at what CVS is, what the symptoms are, what the treatment is. And we will get the perspective of a CVS patient. Let's not waste anymore time. Let's just jump right in. According to the National Institute of Health, Cyclic vomiting syndrome, sometimes referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks—also called episodes—of severe nausea, vomiting, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days. Wow that sounds great right? No, okay you are right. It's miserable. Absolutely 100% miserable for those who suffer from it. Many who suffer from this struggle to find triggers. Meaning they can't pinpoint what causes it so the can reduce the number of attacks they have. So they will vomit everything they try to consume for hours or days. It's the a stomach bug on steroids. It often hits fast and without much warning and depending on the attack like said above can last for hour, days or even longer. This may cause the person to have to stay in bed and miss work or school for long periods. And the person suffering may even have to seek medical treatment for IV fluids or other methods of treatment. Which we will discuss later.
How many people suffer from CVS? The exact number is unknown. But according to the NIH it is estimated that it could affect 4 to 2,000 per 100,000 children. The condition is diagnosed most often in children, although there have been some recent studies that suggest that the condition may begin in adulthood as commonly as it begins in childhood.
So what causes Cyclic Vomiting Syndrome? Sadly, the exact cause of CVS is unknown. But experts believe there are some things that can contribute to the disease. Some of these conditions as listed by the NIH are as follows: gastrointestinal motility which is the way food moves through the digestive system. Or moves at a slow pace through the digestive system. A persons central nervous system function, which includes the brain, spinal cord, and nerves that control bodily responses. A persons autonomic nervous system function, which is the nerves that control internal organs such as the heart. Or the person may have hormone imbalances. It is also thought that it's possible that an abnormal inherited gene may also contribute to the condition.
There are also triggers that can cause an attack of CVS. Here are just a few: emotional stress, anxiety, or panic attacks, infections, eating certain foods, like chocolate, cheese, or additives such as caffeine, nitrites which are commonly found in cured meats such as hot dogs, and MSG. Other triggers could include: hot weather, menstrual periods, motion sickness, overeating, fasting, or eating right before bedtime or physical exhaustion or too much exercise. So basically, after looking at the list of triggers, it's possibk that just about anything can trigger an attack.
What are the symptoms of CVS? The most common symptoms are severe vomiting that occurs several times per hour and lasts less than one week. And also three or more separate episodes of vomiting with no apparent cause in the past year. A person with CVS may also experience abdominal pain, diarrhea, fever, dizziness, and even sensitivity to light. These symptoms may lead to dehydration which can be a life threatening condition.
So now we know what CVS looks like and what causes it. But the more important question is what can be done to treat a person who is experiencing a CVS attack or flare. There is sadly no cure at this time. So treatment is more symptom management. A person with CVS may be given anti-nausea meds, sedatives, medicines that suppress stomach acid, or antidepressants. A person may be given meds that are used to treat migraines. Those meds can be helpful in treating or preventing a CVS attack.
When I spoke with Melissa Kline, a CVS patient she gave me some insight into what it's like to live with this condition. She stated that she has been able to learn what her triggers are. For her Benlysta (which she receives as treatment for her lupus!) and stress are the big two things that will almost always trigger an attack. She states that some patients can catch their episodes early with anti nausea meds, while others end up in the ER to be given enough medication to mildly sedate them. She said that sedating a cvs patient is kind of like a reset button. By hitting that "reset button" they can slow or stop the symptoms, and give the patient a break. Many times she and other CVS patients end up in the ER due to dehydration. So they are treated with IV Fluids and meds to control the nausea so they are able to stop vomiting. Cyclic Vomiting Syndrome is a horrible and challenging disorder and no one should have to deal with it. She is hoping that they are able to find better treatments and a cure in the coming years as more awareness is brought to the condition. She also suggested that anyone who has the condition or thinks they might visit cvsaonline.org.
So help us bring awareness by sharing this article after you read it.