For those just joining, "it" is my chronic (read; I won't "feel better soon" but thanks for the sentiment) illness which I have had for almost two years now and will continue to have for the rest of my life. I have an autoimmune disease that up until two weeks ago didn't have a name. Autoimmune diseases are when your body produces too many antibodies (the things that help fight off germs and cooties) and the body starts mistaking itself for an intruder causing it to attack parts of itself. Depending on which of the 80 or so autoimmune diseases you have depends on which of the body parts are under attack. The diagnostic process is tricky and only one lab comes back that I have a lot of antibodies typically found in rheumatoid disease but unfortunately it doesn't determine which one I have. Every single other lab comes back normal and it does so every single time. I had considered the individual rheumatic autoimmunes which my symptoms fit. I bounced between Lupus (the one I truly thought I had), Rheumatoid Arthritis, Polymyositis and possibly Scleroderma. I thought I may have had Hashimotots, autoimmune of the thyroid, which my sister has but my labs run by my Endocrinologist came back all normal and she didn't seem overly impressed with my running list of symptoms. I even considered Multiple Sclerosis, autoimmune of the protective nerve coverings, as I had symptoms that fell in line but my Neurologist cleared me rather quickly and only treats me for my neurological symptoms. What I never considered, probably because there isn't much information on it out there was Mixed Connective Tissue Disease (MCTD), a rare autoimmune that presents as overlapping symptoms of multiple connective tissue diseases mainly Lupus, Scleroderma, Polymyositis and for some RA, interestingly enough the rheumatoid diseases I bounced between. Like most, if not all autoimmune diseases, there is no cure. Apparently MCTD is not well understood by the medical field, this should prove interesting. When I received my diagnosis of MCTD this month from my Rheumatologist I was not expecting to get a diagnosis at all, never mind this one.
I thought once I'd have a name for "it" I'd be able to move forward. I was wrong. I came home that night prepared to do hours and hours of research online. I had done this for autoimmune in general and each of the above specific diseases which the Internet contains a wealth of knowledge on from articles to forums, forums being my favorite because you're getting a personal experience rather than some medical study. My research lasted all of maybe an hour. I came up with very little more than my description of MCTD above and that "Despite treatment, mixed connective tissueDisease worsens in about 13% of the people, causing potentially fatal complications in 6 to 12 years. The prognosis is worse for people who have mainly features of systemic sclerosis or polymyositis. Overall, 80% of people survive at least 10 years after the diagnosis is made." (Merckmanuals.com). Wait, what!? Nowhere does it mention anything about life with MCTD past this point. Some of my favorite sites (since starting this medical journey) don't even go into prognosis, good or bad! Which to me isn't a great sign. When you look up the other AI diseases it goes on to say most individuals can live normal, long productive lives with proper treatment for many of them. Imagine being newly diagnosed and discovering this, when you already some days ask yourself "Is this what it feels like to die?". It's (excuse my language here) fucking terrifying! I found no online forums specifically for MCTD but I did find one discussion on a Lupus forum where people were referring to MCTD and the info online regarding prognosis. Many of the posters were stating they have lived beyond the 10 & 12 year marks, that it depends which disease presents itself more over time but that it could switch over the years, you could present with one more so than the others then later on present with another more so than that one. Somewhat of a relief but I still don't know much about my illness.
What I do know is that I feel like garbage on a daily basis yet I smile and look normal in appearance and most people don't even realize it. I think people know my bad days are bad but believe my "good" days are equivalent to theirs. They are nowhere near yours and I hope you never have to test that for yourself. My baseline is everyone else's sick day. I feel generally unwell, feverish I guess one would say, yet I have no fever. My skin burns. My joints ache anywhere from dull to excruciating each day. One day it's my knees, another my hands, or maybe my elbow, ankle or hips. Some days it's all of the above. Different things trigger my symptoms; some foods, stress, weather, hormones - yup I feel my worst, my symptoms flare, just because I am a woman. Fantastic! I break out with rashes. Dizzy spells, nausea, migraines, tremors (both internal and external), muscle spasms, tripping because my foot won't lift properly. Ulcers in my mouth and nose. Tingling in my hands, feet, face and tongue. Brain fog. Electric shocks up my feet through my legs (luckily only twice during that one weekend my body went absolutely crazy and I ended up in Yale overnight in March). Chest pain which could be inflammation of the rib joints or the lining of the heart or lungs, I have heard both but never got a real answer on that - I've learned to just chalk most things up to being "normal" for my body these days. I have a constant pain just under my left shoulder blade that feels as if someone has punched me in the back leaving a severe bruise. My hands and feet turn patriotic colors with excruciating pain. This is a secondary disease called Raynauds Disease which goes hand in hand with many autoimmune diseases, its when the blood vessels open and close faster than normal in reaction to temperature change and stress. This can happen literally just grabbing something out of the freezer. Oh and apparently I've developed a sun allergy. My least favorite symptom is the ever growing fatigue. It doesn't matter how much sleep I get or don't get, Im beyond exhausted simply upon waking. The fatigue is there every day, the pain is there to some degree. The rest of the symptoms come and go as they please by the minute. I never know how I'm going to feel.
My every day consists of me struggling to get going to pushing myself through a work day and if I'm lucky i have an appetite and the energy to make dinner when I get home and that's my "good" day. My weekends, on a "good" day, consist of me sleeping until the middle of the afternoon then possibly getting something done around the house (or make it to a family/friend obligation if I can but I can really only handle one small event a weekend at this point which is pushing it) and resting to make it through the next week. A bad day is a good day amplified which results in me not being able to leave my bed period, zero appetite and if I try to force myself to eat I feel as if I will puke after a few bites. My hips feel as if they are in a vice slowly closing crushing my bones straight across to the point they crush down into a v from the pressure. When I'm not leaving the house people know it's a "bad" day. I just ask people to realize my "good" day is absolutely nothing like your impression of a good day.
My day to day life is with diet and lifestyle changes, mind you. Including natural remedies and yoga, which everyone swears is great for my autoimmune diseases (although I've missed the past 3 weeks because I've felt that crappy... I LOVE yoga so that's saying a lot). Im on one long term medication and one short term secondary medication for my illness as well as medications for a host of other problems that come along with autoimmune including blood pressure and cholesterol issues. One medication suppresses my immune system, now not only do I have my everyday illness I have to worry about the other illnesses I am now susceptible to. (So please just take the sick day and stop spreading your germs!). I'm tapering off of the short term medication to prepare for possibly adding a long term secondary medication which happens to be a low dose chemotherapy, also terrifying but if it helps I'm that desperate and willing to try it. It's been trial and error with medications and testings. I've lost count of blood draws and vials. I've peed in cups and even collected my urine for 24 hours in a jug recently. I've had ct scans, ekgs, an echocardiogram and ran on a freaking treadmill.
Due to my suppressed immune system I can now say, hello shingles! Such a lovely surprise. My already worn out body is completely knocked down. I'm holding on by a thread and I still push myself to do the essentials of living with a smile. And the people around me think I'm fine because I "look good". I'm in a hole clawing at loose dirt trying to get out and some of the people closest to me have no idea, whether they are clueless by choice or not I have no idea. (I started this post the other day. Upon publishing I have one hand ready to pull me out of the hole finally after 2-3 weeks of a bad flare combined with the shingles)
Now if you paid attention above I mentioned three specialists that I'm seeing, at $45 a pop. In addition to my regular doctor. My last round of appointments were three in one week, you accept what they give you since they book quickly, plus I had an unexpected visit. Take into account my ever growing medication list. My amounting sick days, luckily the state of Connecticut has the Family Medical Leave Act or I'd probably be out of a job by now. But most of these days I'm also not getting paid for. Take also into account that I had to give up my dream, which also served as a second income. Let's just say I'm on a much tighter budget these days with no room for fun, not that I have the energy for it anyway.
This is my life now. Will it get better? I hope so. However I worry daily that my health will continue to decline. I worry that I will lose my job because I can no longer function as well and will not be able to provide for myself which as a single person is pretty scary. I worry about losing my insurance which allows me to get some relief from my disease, because that one month off my meds as an experiment by my rheumatologist a few months ago was extremely dreadful and I'm sure there were still meds in my system. I worry that I will not be able to pay my bills as it is and I've contemplated which of my possessions I could sell, which considering I'm not a materialistic person isn't much. (Anyone want to buy a Wii?) Did I also mention that autoimmune diseases can attack the organs, not specific to their disease? For example Lupus is known to attack the kidneys for many people despite it being an autoimmune of the tissue. So yea I worry about my organs, pretty sure most of y'all don't have that worry on a regular basis.
This all means that I'm not only suffering physically, I'm suffering mentally and financially. So when I say I can't make it or I'm not sure if I will be able to for an invite, there are several reasons why. I have to factor in: How will I feel that day? Do I have anything major around that time I need to reserve energy for? Will I have extra money to do that? How much stress is involved? How long will I have to sit/stand for? What are my food options, because I will most likely pat for it later? ... And so on. Making plans is not a simple yes or no decision for someone with an autoimmune disease. Please don't stop asking however don't put added pressure on me when I'm hesitant.
So have I changed? Absolutely! My main focus right now is myself, everything else takes a back burner. My physical and mental wellbeing come first because honestly despite "looking good" I'm far from good in some aspects. I truly am just trying to survive at this point. I am in pain, I am exhausted, I am scared. Most of all though, I am blessed. Getting sick has taught me to put myself first, to take care of myself, to choose a more peaceful lifestyle and I couldn't be happier with that part of my life. I also know it could be much worse in all aspects.
Oh, and for the love of God, just like I wear my smile, I post my "smile" on social media. Here, enjoy some crappy photos of me feeling unwell if that'll make ya happy...
Washed out during my most recent flare:
My lovely rash (one of two I get on my face):
Hives from sun exposure:
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