Living with a chronic illness is hard and comes with many challenges. Including challenges most never thought they’d face, especially at such a young age. For instance, when I graduated from nursing school I never dreamed that I would only be able to work for ten years before I had to leave my job to care for myself. That being said when you think of chronic illness you wouldn’t automatically think of the fact that many who suffer from a chronic illness will have to leave the workforce long before they wanted or planned to. But it’s true, sadly, many end up having to leave their dream job or the career they loved to stay home and take care of themselves. Which in and of itself brings up challenges. The biggest being that most around us don’t understand us or our decisions to leave the workforce. Or what that looks like as far as what we can and cannot do now that we are no longer working.Read More
Social Media…..We always hear about the negatives viewpoints and aspects of each platform. Like the fact that social media is full of highlight reels rather than what’s actually real. We only get to see what those influencer types choose to show us, which is usually only the highlights. Or the fact that the internet is full of what we will call “keyboard warriors,” who spew all kinds of nasty hatred into the comment section of any social media platform. They say things that they would NEVER say to someone’s face all because they can hide behind their screens or keyboards without any real consequences. While those are well known facts about social media, what isn’t well known, or often spoken about, is the fact that social media is a HUGE blessing to those in the chronic illness community. I’ll wait while you pick your jaw up off the floor. Did I really just say that social media is a blessing????Read More
Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.
This week we meet Vickie, and we will highlight: Psoriatic Arthritis (PA)
Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!
I am married with two grown sons and a five year old grandson. My favorite hobbies are reading and fishing.
What Chronic Illness (en) have you been diagnosed with? Which one will you focus on today?
I have psoriasis and psoriatic arthritisRead More
Grief is an interesting emotion that can be felt for any number of reasons. To most people, grief is associated with the loss of a loved one, or the loss of a marriage or relationship. Most wouldn’t think that one would grieve what they’ve had to give up. Or the loss of a life once lived. But that’s exactly what I think of when I think of grief. I think about the fact that I am mourning the life I once lived and the goals I once had. The life I had before Chronic illness rocked my life.Read More
Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.
This week we meet Melissa, and we will highlight: Fibromyalgia .
Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!
I started to grow my own food as a hobby. I enjoy playing with my dog Toby, watching TV and reading science related books.Read More
WOW…. June was a month for the books. I know I have been pretty MIA around here for the last month, I have been really struggling. It was a struggle just to get the things done that had to be done; much less doing things like blogging. I had all the best intentions to get all these great blogs up for you and really discuss migraine awareness month. But sadly that was just not in the cards. It was a month where it felt like everything that could go wrong, did.Read More
We all have heard the saying, “A picture is worth a thousand words.” This is absolutely true. I have learned that as someone with a chronic illness, to look deeper than the surface that is presented. The smile that is flashed for Instagram or Facebook. If you look behind the smile and examine the eyes, wonder what is deeper and look you see a deeper story and not the facade presented to the world.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.