Lately I’ve noticed a disturbing trend, healthcare providers that don’t take the time to actually listen to their patients. Or providers that act more like bullies than providers.Read More
How many times have you felt the need to validate yourself and/or your condition this week? Or even this month? How many times have you found yourself explaining your health to someone who probably has no reason to know what’s really going on? Or found yourself explaining why you can or can’t do something or go somewhere? Now let me ask another question..... Why do you feel like you have to validate yourself and your condition?Read More
This time of year it seems like everyone is sick. Colds and stomach bugs and even the FLU. But sometimes it’s hard to differentiate between a cold or the full blown flu especially for those of us with weakened immune systems.Read More
I can't even begin to count the number of times I have been asked what I have learned from my illness. I also get asked what if anything I have learned about the Healthcare System from being a chronic patient that I didn't learn in all the years I worked as an RN or the years I was in school for my nursing degree. The first few years not much came to mind. But the longer I have had to deal with a chronic illness, the more doctors I have seen, the more insurance companies I have to fight, I have definitely learned some things that my education or work experience NEVER taught me. You may be thinking, how is that even possible, you went through more than 4 years of Nursing Education and worked in the healthcare field for over ten years, how would being chronically ill teach you anything that you didn't already know? Well that is easy. During nursing school or during all those years I worked in healthcare I wasn't the patient. I was the caregiver. I didn't really see what the patients had to deal with just to get the treatments they needed, and I didn't see the judgment that patients feel from the healthcare staff. I will just be completely honest, you have no idea as a healthcare provider what it is like to be on the other side of that bed until you have been on that side yourself!! So lets just jump right in!
1. The real meaning of a Chronic Illness - One of the BIGGEST things I have learned from my illness seems silly but I want to be honest. I have learned the true meaning of a CHRONIC ILLNESS. When I took care of patients in the hospital who had a chronic illness it NEVER really hit me just what that meant. I never realized exactly what chronic meant and just how much of their lives are impacted by their chronic disease.
2. Sympathy and Empathy - These are entirely different entities. It is very different sympathizing and trying to understand where someone is coming from. Now that I can empathize as both a patient and as a nurse it has changed my outlook as well as how I interacted with patients and their families. I learned how and why chronic illness patients seem more guarded and at times more fearful than your average patient.
3. Use of medical jargon - While I was working as a nurse I never realized just how often medical professionals use medical jargon. Most likely because i was using it to. Luckily I understand most of it as a patient. But when I am having one of my bad migraines it is often hard for me to really understand much of anything. It was those days that made me so much aware of just how often medical terminology is used to explain things to patients and families rather than lay terms.
4. Dealing with judgement - Sadly, through the last six years I've had to learn how to deal with judgmental medical staff more than I ever expected. Before I got sick I never realized how quick medical professionals are to judge (myself in the past included). Since being sick with an invisible illness I now know how it feels when people assume things about you based solely on your appearance and not your medical history. Or how it feels when people assume you are drug seeking based on your medical diagnosis before they even come and talk with you. This made a huge impact on me and how I practiced nursing.
5. Being Aware of The Cost of Procedures, Treatments, Treatment Centers & Medications - I'll be 100% honest and say that when I was working ICU Step Down I was not aware of the cost of probably 95% of the medications and treatment modalities we used for our patients. It wasn't because I didn't care, it was simply because I had to know so many other things that this information would take a back seat. On the other side as a patient I am much more aware of what medications cost and how much MRI's or CT Scans will cost and what my out of pocket will be. Simply because I have to pay for it. I feel like there is a break down between providers and patients on this topic. The providers want the best treatment no matter the cost. But the patient would usually prefer the best treatment for the cost. Learning this as a patient definitely changed things I did in my practice. Because I knew what it was like to hear your new medication was going to cost $25,000.
6. Honoring Time - What I mean by this is that when you've asked for something for pain and the nurse says "I'll be right back," or "I'll be in at 5pm" with pain meds. But they don't come back for 30 minutes or until 5:15 those minutes feel like hours. As a nurse I always tried to get right back or to go when I said I would. But I never truly understood just how long those 10 or 15 minutes I was gone really felt. When you are hurting or feeling sick to your stomach those 15 minutes may feel like 4 hours!
7. Trust the patient/listen to patient regarding what works for them. I think as a medical professional it's easy to work based on knowledge or experience. But it's really important to listen to the patient in regards to what works. I've learned this because of my migraines. I've dealt with them so long that I know what is going to help and what is a waste of time. And I really appreciate the doctors and nurses who listen to me and don't just throw meds at me because of what they "always give" for migraines.
Needless to say, I have learned so much from being a patient with a chronic illness. I feel like that in some strange way it actually made me a better medical provider. As you can imagine after working in the medical field for many years I have many friends who remain in that field. And due to the things I have experienced with my chronic illness they have been able to learn and improve on the way they practice and treat those they care for who are in similar situations. I will always stand by my feelings that every medical provider should have to be a patient for at least a short period so they can experience things from the other side of the bed. So they can have the full patient experience. Their views on the way they treat patients would be forever changed like mine. That being said, a chronic illness is not something to joke about; however, it has given me a view into a world that I felt I was fully enveloped in, which I had never fully seen before. And for that I will always be grateful.
So your doctor just told you that they are going to get you scheduled for infusions and so many things start running through your head. Typically the very first one is NOT going to be "What will I need to take with me?" However, after the fear and all the questions about the medication you will be receiving has died down you will probably start thinking about what you will need to take with you to said infusion. How long will you be there? Will you want things to do while you are there? In General most infusions receive last anywhere from an hour to as long as 8 hours or more depending on what medication they are receiving. But you also have to include the time it takes for them to ask all the questions, get your IV started/port accessed and pre meds give so you can easily add about another 30-45 min on to your total time. That being said you will likely want to take a bag of some sort with them. So that is exactly what I want to talk about today, things you may want to take with you when you go to your infusion appt. I actually talked to several of my friends who receive or have received infusions in the past about their list of things that they take to their appts. The common thing among almost everyone was that almost everyone takes a blanket. Everyone who has spent any time in a drs offices or hospital know that they are ALWAYS cold. Also many times part of the protocol for many infusions include Benadryl, which makes most very sleepy so having a comfy blanket when you get sleepy just feels good. Some people even said that they take a pillow with them. I personally found that it was to cumbersome to take a pillow with me for a two hour appt. The facility I went to always had pillows available if I needed one. I did think about buying one of the small travel size pillows to take with me but never did. But I may do that in the future if I go back to getting infusion.
The other common thing among most of the people I talked to was entertainment. Since the appts last so long you will need things to keep you "entertained." Yes, we aren't children, but sitting in a chair hooked up from an IV for hours on end can get very boring. Most people said they take a computer, iPad, cell phone, or some sort of electronic device that they can use to surf the internet or watch Netflix. Netflix or something similar is a great way to pass the time. That being said if you do plan on streaming some kind of movie or TV show make sure that you take headphones (ear buds) and a charger for your device. Most infusions centers are set up with everyone in one big room or in a big open space. Not in single patient rooms like when you are in the hospital. So taking headphones is good for you and for everyone around you. Other things that people said they take with them to infusion appointments to keep them entertained were things like coloring books and colored pencils, a book or magazines to read, crossword puzzles or Sudoku. There are a million and one things I could list out, but the point is you will want something to keep you entertained when you get bored.
The final common thing that many people said they take to infusion appts was food. Many times as I have said before you are at these appts for hours and hours so you may get hungry. Most facilities will not feed you, if they do have food on hand it is most likely to be something like crackers and juice or something small. So taking your own food is important. You will probably not want to eat a lot before of during your first infusion just to see how the meds make you feel and if you will get nauseated. But after that you should know what to expect. If it were me I would take a protein bar and water or something small that doesn't take up a lot of room in my bag and isn't super smelly for those who are around me that may be feeling sick.
I hope this helps you all. Infusions can be a scary thought but if you can know a little about them going in it will help. Take time before you go to your first appt to research the medication you will receive and see what the possible side effects are. Also research how long it may take to start feeling better from the medication. My recommendation, for what its worth, is to make sure when you are researching to only use well know sites. Like the Mayo Clinic, The NIH, or the drug company website. Never use sites like Wikipedia. Wikipedia can be updated by anyone, anytime therefore the information may not be totally accurate. When living with a chronic illness knowledge truly is power, so taking the time to learn about your condition and the medications you will be receiving is a MUST.
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.
By AMY NORASummer is officially here. It means we go to the beach, we sit outside at the Ballpark, we go and plan for those wonderful picnics, we spend time with family barbecuing, it's about the time with friends family and just enjoying those wonderful late nights at the lake. The other thing is that we are out in the Sun a lot. When you have an autoimmune disease that also means that most likely you experience photosensitivity. Photosensitivity is that nasty little friends that accompanies us everywhere. It means that we lather on that sunscreen as if, well honestly, she were our best friend. We layer it on at 2 hour intervals as if our lives depended on it; ironically in a way our lives do depend on it."Photosensitivity is the term used to describe sensitivity to the ultraviolet (UV) rays from sunlight and other light sources, such as indoor fluorescent light. Photosensitivity can cause rashes, fever, fatigue, joint pain, and other symptoms in people with both cutaneous (skin) and systemic lupus. Excess exposure to UV rays is a common trigger for increased disease activity (flare) of both cutaneous lupus and systemic lupus." (Lupus Foundation of America)Remember, with the 4th of July holiday coming and summer here, have fun but also protect yourself. Use sunscreen often, stay in shaded areas but remember you are still exposed to UV rays, wear hats, and just be smart. Lupus Love...
When you hear someone say CDC I'm sure the first thing you think of is Centers for Disease Control! I thought the same until earlier this year. In early spring I joined a twitter chat on Healthcare and insurance issues faced by the chronically ill. It was a great chat and I felt a lot of issues were brought to the forefront. Due to this chat I found (they actually found me) a great organization called The Chronic Disease Coalition (CDC). Once I took time to look into the organization, I really liked the work they do – advocating for those with chronic illness by promoting awareness and encouraging all to take action Per Below, I will tell you more about this incredible organization and how you can become involved if this is something that speaks to you!
The nonprofit organization was founded in 2015 with the goal to create a platform for people with chronic conditions to speak out and take action to make a difference in their community, state or even across the United States. The CDC dedicates their time to protect patients’ rights and fight against discriminatory practices or policies that prevent patients from accessing care. Since the day they became an organization they have focused their efforts to advocate for people who live with lifelong chronic conditions like, MS, diabetes, lupus, kidney disease and cancer. The CDC promotes awareness and education in hopes that they can raise public awareness of the chronic health issues that we deal with on a daily basis. They do this in conjunction with encouraging other to engage in advocacy and provide advocacy tools that help fightagainst discriminatory practices As a whole, they recognize that we are strongest together, so they enable supporters to speak out and do the same when help may be needed to protect the rights of all patients.
One of the big things that this organization spends a lot of time on are the health issues that are being dealt with by the government at both state and federal levels. They really encourage us to get involved with any issues that may put patients lives or access to care in danger. Recently, they have been focusing a lot of time on the opioid crisis. Many have written letters, sent emails or called their representative to educate them on the issue. They have also been focusing attention on legislation across the country that would allow insurance companies to reject coverage for individuals simply because part of their medical bills are being paid by nonprofit organizations! This could mean that people would be unable to receive care of any kind, and would be especially dangerous for those who rely on treatment to stay alive.
If you visit the CDC Website you can find the facts on all the issues that have resulted from insurers, policymakers and others within the health space, trying to cut corners and increase their profits and the patient’s expense. They provide information about the problems that the chronically ill may face with insurance companies, in the workplace or at school! The website also gives you the options of sharing your experience dealing with all the issues brought upon by chronic illness. As well as the option to take action and write your legislators about some of the big issues like the ones mentioned above.
You also have the option to join the coalition.When you join the coalition you will receive information on the important issues and alerts when they need you to help stand up for patients rights. I joined the coalition in March of this year, and it has been a great experience. I have learned so much and realized just how much I didn't know about the real issues at hand. If you are concerned that they will overtake your inbox with alerts and such, that is not the case. I may get as many as 5 emails a month. In those emails we receive information about bills that we need to focus on or ways that we can help spread awareness or act as an advocate.
I asked a few of my "co-advocates" why they decided to join forces with the CDC and this is what they said.
I am an advocate because it seems like a lot of what we go through is unspoken in our society. I really want to bring a focus to those of us who struggle with chronic diseases and pain on a regular basis. I want lawmakers to know what we go through, so they can make informed choices, instead of voting against our interests. -Gwendolyn Bahu
I chose to become an advocate because I don’t want anyone to go through what I have with endometriosis or any other illness. Chronic diseases are debilitating and wreak havoc on every aspect of our lives and desperately need more funding and awareness. I decided to be part of the Chronic Disease Coalition to help others and bring more awareness to chronic illnesses. - Samantha Bowick
If this organization sounds like one you. would liked to get involved with make sure to go to their website and find out more about getting involved. It feels so good to know that you are working on something that could impact thousands of lives.
**All pictures used for this post were taken from the CDCs Website with approval**
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.
Dear Lupus,You came into my life with asking, without an invitation. You came in and made it known by all that you were GOING TO BE THE CENTER OF ATTENTION. Who asked you to come? Who asked you to come into my body and take my life away?? I sure as hell didn’t.
Looking back you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you that. They just said I had mono forever. Six months to be exact! Who has mono for six months?!? I always wondered why the simplest tasks made me exhausted and the people around me could run circles around me for hours. I also wondered why I seem to require so much more sleep than others my age! It was because of you LUPUS. You went away for several years for the most part and I was grateful. I was able to finish nursing school and my bachelors degree. I was able to work as a nurse for 6 years without any issues. Even though you weren't active I was always exhausted all the time. And I could never stay up as late as people my age or couldn’t go out and "party" like others my age etc. It was all because of you. Damn you LUPUS!
Finally six years ago you officially made your move. You moved in and took up residence for good. Although we never discussed this, I never agreed to this, I didn’t give you a key or clear out a drawer for you. Instead you just made yourself welcome. Since that day long ago. You’ve made my life or a good part of it a living hell. I have lost several friends along the way because they think I don’t want to see them or that I’m just full of excuses as to why I don’t want to go out to eat or go the bar after work. Or because they simply don’t understand when I say I’m tired it’s not just lay down and take a nap tired it’s pure exhaustion. The one thing you’ve taken away from that hurts the most is the fact that I haven't been able to cheer on my sister as she pitches and plays travel ball all summer. Because of the heat. Since you moved in you made me so sensitive to the sun and have taken away my ability to be out at the ball field without paying for it later. And it literally has broken my heart.
You came and brought along uncontrolled pain (at times), long term steroids (leading to weight gain), inability to be in the heat or sun, sleep issues, and a plethora of other very undesirable diseases that go hand in hand with you. I can’t thank you enough for your generosity. You’ve done enough. Now go away and take all the “gifts” you’ve brought with you that are also not welcomed here.
One of the reasons I hate you the most is because between you and your friend endometriosis I will no longer be able to carry my own baby. And I've never wanted anything more than to be a mother. But because of you, the side effects of the drugs I take to treat you, and your buddy endometriosis that's no longer possible. My lifelong goal gone in a second.
You can also take adrenal insufficiency and Hemiplegic migraines with you. Because of the three of you I had to quit my job and move home with my parents. Because you were all being so mean. My blood pressure would stay in the 70's and 80's because my adrenal glands no longer act like they should. Over the last two years I have spent more time in the ER than most people do a LIFETIME!! All because of the debilitating migraines that are now a part of my daily life.
I'm tired of all of you. Tired of the medications, the depression, the anxiety and most of all the pain. I never asked any one of you into my life, yet you are all here. You have changed my life in so many way I can't even count. I've lost the majority of my local friends. I will never be able to complete my masters degree that would give me the knowledge to teach nursing school because of you!! Thanks to you I can't hold down a job outside the home. You need to pack up and get the hell out of my life! GO. GO I tell ya!!
I live by the verses.
*Philippines 4:13 I can do ALL things through Christ who strengthens me.
*Isaiah 41:10 So do not fear I am with you; do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand
** This is my updated letter to lupus. I felt with it being Awareness Month this was a good time to update and share.
Most would agree that some years are worse than others, and this year Nany feel like their allergies are going to get the best of them. Even though we have seen just about every kind of weather possible this "spring," (I won't call it spring yet!) everything seems to be blooming already. That means that for those who suffer with allergies and chronic sinus infections, this time of year (and fall) can be very frustrating and miserable. Allergies are not classified routinely looked at or classified as a debilitating illness. However, like many others i have talked to this spring, I am starting to feel like it possibly could be in that classification. I have been doing some research on this topic the last week or more, so I wanted to share a few of the things I've learned.
It seems that the best place to start this article is to start with a few definitions. I want to provide knowledge for those who may not suffer or those who may not be aware of what allergies are or can be! So let's start with what an allergy is. By definition- an allergy is when a person's immune system reacts to some kind of foreign substance, that is know as an allergen. An allergen could be things that can be eaten, inhaled into your lungs, touched, or injected into your body! Specific response can cause anything from sneezing, itchy eyes, a runny nose all the way to severe reactions that cause hives, low blood pressure, trouble breathing and even death! Examples of possible allergens are dust, mold, trees, grass, ragweed, pollen and food allergens such as milk, egg, soy, wheat, nuts it fish proteins.
How many people suffer from allergies every year?!? Any guesses? I was shocked to find out that allergies have been found to be the SIXTH leading cause of Chronic Illness in the US alone. This can lead to an annual cost healthcare costs of an excess of $18 BILLION dollars. It is estimated that 40- 50 MILLION Americans have allergies of some kind every year!! People of all ages can struggle with asthma, allergic rhinitis, food allergies, and eczema. Asthma is said to affect more than 24 million people in the US, including more than 6 million kids.
I'm just guessing that everyone could probably name at least 5 people right off the top of your head if you were asked who you know that suffers from allergies!! One would think that due to the fact that so many million people suffer with allergies that is would be easily treated by any medical provider. While that may be true for the every day Joe who suffers from seasonal allergies. But for those who have severe allergies that don't respond to the over the counter meds and treatment, or has allergy based asthma, a specialized doctor is necessary. A doctor who specializes in allergies and asthma would be the best person to see. Simply because these providers received specialized education and training in these conditions. They are able to perform allergy testing, accurately diagnose your symptoms, and develop a personalized diagnosis for your specific allergies and conditions.
There are two key steps in diagnosing your allergies. One would be to take a full and thorough medical history, and the the second would be doing actually allergy testing. You are probably wondering why a full medical history would be important. That's simply because when it comes to HUMAN allergies the person's medical history is just as important as the actual testing. The history provides a link between the test results and the actual allergies. The history can help the provider to see what allergies your family might have and to see what certain medications, in or outside settings or food seems to make your symptoms worse. While the provider is taking your history you might be asked about the following:
- Your overall health
- Your symptoms and if your immediate family have asthma or allergies such as skin rashes, eczema, hives or hay fever.
- Your symptoms. They provider will most likely want to know when your symptoms occur( what you are doing and where you are at), how often they happen, what brings them on and what if anything makes your symptoms better. The allergist may also want to know about your home and work environments and eating habits to see if they might lead to your exact allergies.
After the provider has taken a very thorough history, testing will most likely be done. Allergy testing has become the gold standard in the diagnosis of allergies. Blood and skin tests are used to detect a person's sensitivity to common allergens. They can show allergies to things like pollen, dust mites, animals, ragweed, certain foods, latex, certain trees or plants. In most cases skin tests have proven to be the most accurate and preferred way to diagnose a person's allergies. Blood tests are generally ordered less often, but they could be used in cases of severe skin rashes, or if the person can not stop a medication that can possibly interferes with the skin testing. Allergy tests basically give reliable results that confirm information that the provider gathered while taking the medical history.
After you've had a positive allergy test and you and your provider are aware of what allergens you react to, it is time to develop an individual plan of care. According to the Allergy and Asthma Foundation of America there are many options for treatment depending on the specific allergy and the severity of the allergy/reaction. The foundation states that the treatment of allergies can include: avoiding allergens, medication options and immunotherapy (which can be given as a shot or a tablet placed under the tongue.
You may be thinking what I was when I read through my research, HOW ON EARTH DO I AVOID ALL ALLERGENS THAT IMPACT ME?!?!? That being said the AAFA says that the best way for a person with allergies to prevent allergy symptoms and decreased the required amount of medications is to AVOID your allergens as often as possible. They say that doing this can include removing the source of allergens from home and other places you spend large amounts of time. So if you are allergic to pet dander either remove said pet from the inside of the house or look for hypoallergenic types of animals. They also suggest routine nasal washings to help reduce symptoms brought on by airborne allergens. This can be done by doing a nasal saline rinse using a squeeze bottle or Neti Pot. (Side note if you are going to do nasal rinses you should always use only bottled water or boiled tap water. Never tap water that hasn't been boiled)
If the avoidance technique does not work for you, there are medications available. Not everyone is okay with taking anything for allergies, simply because they don't think it's a big deal. However, not treating your allergies can turn into much bigger and more painful issues like sinus & ear infections. Below you will find a list of classes if medication that can be taken to help with allergy symptoms.
- Nasal Corticosteroids, aka nose spray- Work by reducing swelling which can cause a stuffy, runny, itchy nose. This option is the most effective for those suffering from nasal allergies.
- Antihistamines- Do just what the name says. They block histamine which is a trigger for allergic swelling. This type of meds may reduce sneezing, itchy runny noses and hives. These meds come in a variety of forms, and often time can be found over the counter as pills, liquids, melting tabs, creams or nose spray.
- Mast cell stabilizers - This classification of meds work by keeping your body from releasing histamine (that is a cause of allergies). By blocking the production it helps with itchy, watery eyes, or an itchy, runny nose! This group is available as eye drops or nose sprays.
- Decongestants - This group of meds works by reducing stuffiness by shrinking swollen membranes in the nose. One has to be cautious with these meds. As they can, if used more than prescribed, cause the stuffiness and swelling in the nose to worsen.
- Corticosteroid creams &/or ointments - These products relieves itchiness and can prevent rashes from spreading.
- Oral Corticosteroids- This type of medication has to be prescribed and may be used to reduce swelling and stop severe allergic reactions. These medications do have well known side effects so be sure to talk to your doctor or your pharmacist.
- Epinephrine - This comes as pre-measured and also self injectable devices. This is the most important medicine to give during a severe allergic reactions (aka anaphylaxis). For this medicine to work properly it must be given/taken within minutes of the first sight of a serious allergic reaction. If you know you have a severe allergy to food, any kind of stinging insect, latex or medications, you need to make sure you always carry EPI pen with you. And that friends/family know how to use it if you are unable to.
Another method of treatment for allergies is Immunotherapy. Currently there are two types of immunotherapy that can be used to treat allergies. They are allergy shots and sublingual immunotherapy (SLIT)
- Allergy Shots- This method of treatment involves giving injections of allergens in increasing doses over a long period of time. By doing this the person receiving the shots progressively becomes less sensitive to the allergens given in the shot! Allergy shots work best for those who have allergies to pollen, pets, dust, bees and other stinging insects and asthma. However, those who have allergies to food, feathers, hives or eczema will not likely to respond well to shots.
- SLIT - This is another method for treating certain allergies without injections. When using this modality for treatment, an allergist will give patients small doses of an allergen under the tongue. Over time the exposure will improve tolerance to the the allergens thus reducing symptoms. This method overall is fairly safe and effective for treating nasal allergies and asthma. Currently SLIT is only available for the treatment of dust mites, grass and ragweed!
I don't know about you but I am feeling a little overloaded at the moment. I have provided you with lots of information on allergies. I hope that my research has provided you with more information about allergies, treatment and diagnosis. I know I learned a lot. I must include this disclaimer, the information provided in this article is just for self education and gaining knowledge about allergies. That being said you should never start a new treatment method without first speaking with your doctor or getting a referral to an allergist. It is a fair assessment that many people will suffer from some kind of allergy during their lifetime. However, like most medical conditions everyone's journey with their allergies will be different. And what treatment works for you may not work for Your kids. While doing research for this article I came across The American College of Allergies, Asthma and Immunology. They have a fabulous website that provides so much great information and is easy to understand. Click the link above if you want to learn more.
If you have any questions or comments on this post feel free to share them in the comment section below. And feel free to share with anyone who might benefit.
I don't know about you, but I am really bad about taking time to care for myself. Or spending money on things that will benefit me. I often put others needs before mine and that is something I've always done that. Until recently, when I realized that my needs truly need to come before others and I need to do more to take care of myself and not just symptom management and doing only what I feel like doing. So I won't usually take the time or spend the money to take care of me outside of what has to be done daily just to function. Sometimes it will really take a reminder to spend some time taking care of my skin and and body outside of my daily routines. I assume that others are like me as well. Over the last year I've actually been taking the time and spending the money to take care of me. So I decided to share some of my favorite products that I think others with Chronic Illness/Chronic Pain should have on hand and would enjoy.
Bath Bombs/Epsom Salt
One of the things I have found that I enjoy and can be both beneficial and a way to pamper myself is a good hot bath. So I wanted to tell you about a couple of my favorite items I use in the bath.
1. One of my FAVORITE things is to take a HOT bath. So the first thing on my MUST HAVE list is a good Bath Bomb. Most of my bath bombs come from an Etsy shop called "ThisLittleLymeOfMine." Her products are not only aesthetically pleasing, they also have healing properties. She uses Himalayan Pink and Dead Sea Salt to make her products, both of which are known to have a healing properties. One reason that I like to support this shop is because it is owned and run by a fellow Spoonie. She is currently running a special for those who use the code 5OFF15, which will get you $5 off a $15 purchase. You can visit her shop by clicking on the link above.
2. Another must have in my opinion is a good EPSOM SALT! I've tried out many different kinds of Epsom salt throughout the years. And my most favorite is Relief MD Lavender Epsom Salt. I use this a lot at night due to its calming properties. Lavender is known to help one sleep, and the magnesium in the product helps to soothe sore and tired muscles and joints! I have found this in stores local to me but it can also be found on amazon. The link above will take you to the product on Amazon.
The older I get the more I realize just how important taking care of your skin really is. And not just the skin in your face, we need to take care of all our skin. We only get one face so we have to take care of it. I've been looking for some good skin products over the last few years and the following are the best I have found.
3. The next thing I want to share is lotion, because I have been having some major skin issues due to my illnesses. And I know I am not alone in this. Many with chronic illnesses will deal with skin issues. So I felt it important to share a good product with all of you. Recently, I have really been liking the Jergens Wet Skin Lotion! One of my favorite things about this lotion is that you can put it on your skin while it's still wet and you don't feel slimey. When it dries my skin feels so soft and nice!! By clicking the link above or looking at the picture below you will see that if comes on amazon in several size and quantity options, and 5 scents. My favorite is the coconut, it reminds me of being in a beach with a drink in my hand!!
4. Another line of products I've been loving is the Senegence Skin Care Line. (And no this is not a shameless plug because I sell them! I truly love them and that's why I'm sharing!) I use the whole normal to dry line which includes a cleanser, a day moisturizer and a night moisturizer, as well as some other products. Including a polishing exfoliator. Even though I have some major skin issues on my face as of late due to my lupus this line has significantly helped those issues. My skin is much more even and much less red. The dark circle treatment has done wonders as well. You can see before and after pictures below. And if you want anymore information on the skin care products I use just click the link above.
One of the non-pharmacological ways I've found to deal with my pain is by using heat! That's why I want to share my two most favorite heating devices.
5. When struggling with chronic pain a good HEATING PAD is essential. Over the last few years I've tried many different heating pads. Most of which didn't hold up to frequent use. I just got the best Heating Pad I've ever had. They have a couple different size and color options for this pad. The things that I like about this specific heating pad is that it's made more like a heated blanket. This particular product isn't like the older ones where the cover and the pad are separate, and over time the heating pad gets misshapen and doesn't fit in the cover. Another positive thing about this pad is that you have options of how long you want the pad to be on before it shuts off. You have the option of a two-hour timer or no automatic shut off. Another benefit is the automatic shutoff. I also like that the temperature can be set anywhere between 1 and 6. Not like the older models where you got not hot, really hot and way to hot!
6. Heated blankets are simply a MUST when you have chronic pain!! There are different sizes and options for these blankets. I have one that's a heated throw that's nice for cuddling up on the couch. And one that is queen sized and stays on my bed. All of my heated blankets have been made by Sunbeam. My all time favorite is the Sunbeam Dual Control Heated Blanket. One thing I like the most about this blanket is that there are dual controls so if you were sharing the bed with a significant other you can each set your own temperature. And there is a wide array of temperature options. My other favorite thing about this exact blanket is that you can preheat it. I like to turn on the preheat function about 10 minutes before I get into bed so it's ready for me when I'm ready. When you are ready to buy this kind of blanket you should watch the prices. Certain times of year (usually during the holiday season) the blankets will drop in price. .
Sleep is so important when you are chronically ill. Yet it is often one of the biggest problems we deal with. I have found a few items that have significantly helped me in my battle of with poor sleep.
7. One of my favorite ways to pamper myself is by putting my super soft sheets and fleece blankets on the bed. The ones I currently have are T-shirt sheets . They feel exactly like your favorite soft T-shirt. In my opinion there is nothing better than getting into a clean, super soft, set of sheets! The particular sheets that I have and are pictured below will come in 9 different colors so you should be able to find ones to fit your bedroom decor!
8. A good BODY PILLOW is a must! When you deal with chronic pain of any kind or insomnia good pillows are important. Especially a body pillow because it helps you to find THAT spot that is often very hard to find! When you look them up you will find that they are called maternity pillow because of the shape. My body pillow is a maternity pillow, but has really helped me sleep and I have less nights of insomnia since I got this pillow.
9. Anyone who struggles with migraines, light sensitivity or even insomnia needs a good Sleep Mask. Like many other items on this list I have tried MANY different sleep masks over the course of several years. Things you should look for in a sleep Mask is that it truly blocks all light and is the correct size and will fit your face. Like many other products, you get what you pay for, and that's the same with sleep masks. The cheapest is usually not the best. But you also don't need the most expensive. Just try a few and find what you like. The product linked above and shown below is one of my favorites
10. I think all ladies (and men I suppose) should have a good foot spa! This spa is the one I have and I really enjoy using when my feet hurt! It's also fun to use for a girls night in! I used it a lot more when I was working and had been on my feet a lot. But you can really use it anytime. It comes with interchangeable pieces that can be used for massage or scraping the dead skin off your foot. Any spa would be good. The one I linked is simply the one I have.
These are just a few of my favorite MUST HAVES that I discovered over the last few years. The items I mentioned and linked are good for all people and can be used by anyone. But they are all very beneficial to those dealing with a chronic illness or chronic pain. These days any product I find that will make my life easier is going to be high on my list of necessity and to share with other. I feel like we all need to support and help each other, one way to do that is to share the things we have found in life that make things easier. I hope my list will help one of you and possibly make part of your life a little better or a little easier. If you have any questions about any of the products please just leave them in the comments for me.
If I had a nickel for every time I've heard over the course of my life that losing weight would help, I would be a rich rich women by this point in life. Yes, I know that getting to and staying at a healthy weight is important! So is eating the right foods and exercise. But in the long run will losing weight really fix or cure your health issues? Yes, I'm sure it probably will help some. But it's not going to fix everything!! People like to throw that comment out for every issue. Oh you have headaches, lose some weight! Oh you have IBS, lose some weight! Oh you aren't having any luck dating, lose some weight. Oh you're having problems getting pregnant, lose some weight. I assume in the majority of cases people truly do not mean to be a Debby downer by telling others this. But they also probably have no idea how it feels to hear that from people you loved and respect, and expect some sensitivity from. If you've never struggled with your weight you have no idea how it feels for a friend or family member to direct those three words at you. "LOSE SOME WEIGHT!" As a person who has struggled with my weight since High School I understand what a touchy topic this can be. I look back at my teen years and would give anything to be back at that weight now. But sadly that Amber was about 40lbs ago. But I didn't just get fat due to poor choices and lack of proper food, just like many other chronically ill. Most of us probably took the DEVIL drug, aka Prednisone. Yes, prednisone fixes many many things. But it is also known to cause weight gain due to the cravings many deal with while taking the medication! And not like 3lbs weight gain. We are talking like 25, 50, 75 lbs. And it came on FAST. Your symptoms are mostly gone but now you got all the bonus weight. Sigh. The weight no one wants.
But it's not just Prednisone that causes weight gain. Hormones often used for birth control can also cause weight gain, as well as Lyrica which is used to treat fibromyalgia! There are many many more that can cause weight gain. The point I'm trying to make here is that every over weight person you see did not just sit on the couch eating chips and watching Netflix all day! Even though that is what people automatically assumes, it is not always the case.
Did anyone think that maybe those of us who gained weight while on Prednisone might deal with a LOT of daily pain or extreme exhaustion!?!? Have you ever lived with so much widespread pain that literally every joint, bone and muscles hurt so bad that it's torture even getting out of bed. Much less taking a walk or going to the gym. Does anyone consider the fact that many of us who are over weight can't stand the way we look and can't look at ourselves in the mirror. Many of us who have gained weight due to medical conditions or medications never asked for this. We didn't just give up on ourselves and sit and eat chocolate all day. We got sick!!! And because of that many have taken medications that can cause rapid weight gain that doesn't come off easily.
There are also those in the chronically ill community that gained weight because of the pain. They may have not felt like being the most active person. Every step, every tiny movement make your whole bodg ache. Then when someone throws out the "just lose some weight," comment and you just wish they could live in your shoes for 24 hours so they know what's it's like. It's honestly really hard to do anything at times, even low impact exercise can hurt! So what I am saying is when you already hurt in places you didn't know could hurt the last thing you want to do is "hit the gym!"
If you really think you are giving offering up some groundbreaking piece of advice to work out and eat healthy. YOU ARE NOT! We've heard it from family and friends and even the doctors. I will admit the best I've ever felt was when I wasn't walking in the morning before it got hot and ate a diet low on gluten. (gluten has been found to mess with inflammation in everyone.) It just wreaks havoc with the chronically ill. But let's be honest eating healthy can be really expensive! And no that's not a cop-out, but if you have ever tried to eat a gluten free diet, it's hard at first and it's expensive. And let's be honest until you are ready to make a big change it isn't going to happen. We are the only ones who can decide that we need to change the way we eat &/or our activity level. No one else can do it for us.
I guess the takeaway from my rant and rambling is that I wish people would work on their delivery. If you are kind and truly concerned about my wellbeing, I'm going to be more apt to listen to you. More than I will listen to the person who just tells me I'm fat and I need to lose weight. It's not a surprise I know what I look like. I understand that research shows "When patients lose 5-29 percent of their body weight, the symptoms of chronic Conditions will improve!"Per the Cleveland Clinic. I know this but sometimes just getting your body moving and making that first move is the hardest part.
If I had a dime for every time I've been told by a friend or family member that they didn't want to tell me something or invite me to something because I'm sick, I would be RICH!! I've been left out of all kinds of news and events over the last few years! News about a new baby or a new job, or that someone lost a job or was struggling with something, or being left out of a fun night out. All because I am sick. I know that my friends had the best of intentions, but I'm just a normal person! I can handle anything you don't want to tell me. In fact I am more impacted when I am left out more than when they share worrisome news. Yes, it's true I have chronic conditions, some of which are impacted by stress, but it's my stress not your stres. Just because you are stressed over your news doesn't mean I will be. I totally understand why people don't always share their news with me. They think by not telling me it will protect me from undue stress. When in reality not telling me makes me worry more and tends to make me more upset. I may start to worry that we aren't friends anymore or that you are angry with me for some reason! Learning that I wasn't told makes me feel like I was never given the opportunity to share in your good news or support you through the bad.
Just because I am sick doesn't mean I don't want to know all the things about my friends. It also doesn't mean I can't be happy for them. For instance, I know some people who feel that those who can't have kids wouldn't want to be told about a new pregnancy. They assume that by telling me that it will make me sad and frustrated. It's true that I will probably never be able to carry and give birth to my own kiddo, but I've come to terms with that. While I may be slightly sad when you tell me you are pregnant, that doesn't mean I can't be happy and excited for you!! I still want to attend baby showers and buy the baby gifts. And I will always want to snuggle with a brand new baby!! I understand the reason for not sharing but PLEASE don't leave me out!!
Don't leave me out when you are making plans for a girls night out either. I may not be able to attend because of a migraine or a respiratory infection or a flare. But I still want to be invited. Finding out via social media that you've had something exciting happen or that you had a night out and didn't tell me, makes me feel bad. I would much rather hear your good news from you than second hand or from social media. It's much more sad and hurtful to find out that something big is going on with you and I didn't hear it from you!
I know that chronic conditions aren't always understood. People don't know what might make your condition flare or what increases your stress. And that's okay, I personally don't expect them to. That being said, never hesitate to ask me about my condition. I will always be glad to tell you about it and what impacts it!! I will always be real with you as well! I won't make excuses to not see you or go to dinner, I promise to always tell you what's really going on. And please don't feel like you can't tell me something because I am sick!! Even at my worst I will still be excited or happy for you. Or help you talk through something you are going through. Above all I am still me, I am just me with an illness
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!
Exercise is not something I have talked a lot about in previous posts. Because it's not something I have been doing. And it's not something I enjoy, or to be honest know that much about. But honestly it's time! The cardiologist cleared my heart and we are looking at my lungs. But recently a doctor that I love and respect very much reminded me that the shortness of breath and high heart rate I have been experiencing could be something as simple as deconditioning. So it's time for me to get back to exercising. And to make getting fit a priority. As I started researching how I should get back into the fitness world I thought others could use the information as well. So today I wanted to share a bit of information on what kind of exercise is good for those with chronic illness/pain and joint issues.
Before we get into any suggestions about exercise I wanted to remind you about a few things.
- Before beginning any exercise program you should ALWAYS contact your physician to get the okay.
- You should always start with low impact and go slow! You can increase your impact and intensity slowly.
- Always move at your own pace and never try to keep up with someone you are with or with a class.
- Lastly if your pain level increases by more than 2 points from where it was at the start of the exercise you should stop &/or modify that specific exercise to try to ensure that you don't cause a flare.
It is recommend that everyone do a combination of stretching exercises, strengthening exercises and cardiovascular exercises! Stretching will help to increase flexibility, loosen any tight or stiff muscles, as well as improve range of motion. Everyone should be doing some stretching EVERYDAY!! Strengthening will help to build up muscle strength. And cardiovascular exercise has a plethora of healing benefits. Now let's look at what specific cardiovascular or aerobic exercises you could be doing.
1. Walking - is an excellent form of light aerobic exercise. It helps to bring oxygen and nutrients to your muscles, helps rebuild stamina, boosts energy, and will reduce stiffness and pain. Other options of low impact aerobic exercises would be riding a stationary bike or using an elliptical.
2. Yoga - Practice the most gentle kind of yoga you can, preferably the Hatha form of yoga. This kind of yoga is a combination of postures, breathing, and meditation that will reduce the physical and physiological symptoms of pain. A study that was published in the Journal of Pain states that participants reported significantly less pain when doing yoga. Yoga will also help to build endurance and energy while improving sleep and concentration.
3. Tai Chi - The benefits seen with tai chi are very similar to those seen in those who do yoga. Tai Chi is a very low impact kind of exercise where the participants slowly, gradually and gracefully preform a series of movements. Studies show that this form of exercise may even be better to relieve fibromyalgia pain than yoga!
4. Swimming & Water Aerobics - Any exercise in the water is good for people with chronic pain or joint issues. It is also an excellent alternative to walking for those with mobility issues. Being in the water provides a low-impact cardiovascular exercise that helps to keep you moving without putting added stress on joints and muscles.
The last point I want to make applies to all people. Not just those who are chronically ill. It is something I have struggled with love you whole life not just the last six years since I've been diagnosed. I don't know about all of you but if I don't have an accountability partner I am less likely to stay accountable and stay on track. If I have someone who is checking in on me a few times a week saying hey how is your diet, and how is your exercise routine going? I am more likely to actually stay on top of those things. So I strongly recommend finding someone in your life to be that person for you. So make sure you find someone to help you stay on track.
We took a brief look at some exercises that are good for those who have chronic pain or have joint issues. So maybe this will give you an idea of where you could start. I did not cover stretching directly because most people have a basic idea of how to stretch. I also didn't cover strength training, because it can be very complicated and vary dramatically from one person to the next. However, there are articles for reference on both below. If you do plan on starting a new exercise plan please let me know what you plan on doing. I know for me having an accountability partner works best for me. If I don't have someone to keep me accountable then I won't stick to my plan as well as I do with that partner. So that is also something for you to keep in mind. If I can help you in any way please let me know. I would be very happy to help!!! I hope this helps some of you. Below are some articles for references on exercise with chronic illness for you.