This post has originally been created in Polish, my mother tongue (link here). I’ve been writing this blog in English, since I live in an English-speaking country and this is where I get the treatment for all my conditions and where I battle them every day. But most of my Polish friends knew only a little about my health issues, if not at all. I’ve decided to let them know about my struggles not to gain their pity but to put their minds into a different perspective – a point of view of someone like me, us, people who suffer from chronic autoimmune disorders, so called ‘invisible illnesses’. This post won’t be a literal word-for-word translation of the original but all the important details and sense will be kept. Also, since it’s been a week since I wrote the other one, this one will include few updates the other one is missing.
I’m almost 35 and I have 4 autoimmune disorders, among other health issues, but those 4 are my worst nightmares.
The most recent one, from a little over 3 weeks ago, is Myasthenia Gravis (MG – not to be confused with Mycoplasma Genitalium, which is a totally different and unrelated illness ). Myasthenia Gravis is a long term neuromuscular disease which happens, when a breakdown occurs in communication between nerves and muscles. Its name comes from the Greek and Latin words meaning “grave muscular weakness.” MG doesn’t discriminate any race, gender or age although it most commonly occurs in women under the age of 40 and in men over the age of 60. It is uncommon in children but not unseen. It’s characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. Skeletal muscles are those of legs, arms, face but not smooth muscle tissue, so it will never affect your intestines, bladder, heart, etc. It means you are not in danger of a sudden heart failure. But Myasthenia Gravis has her own ways of making your life miserable and being a life threatening condition (details to follow soon). As in every autoimmune disorder, your immune system breaks down and starts producing antibodies attacking its own cells and tissues. In MG case, your antibodies block receptors for acetylcholine (a neurotransmitter), which is located in a neuromuscular junction. As a result, acetylcholine cannot communicate with her receptors to send an impulse to your muscles, effecting in muscle weakness. So far it doesn’t sound so bad, right?
Myasthenia Gravis usually starts very innocently – droopy eyelid, lip, double vision, smooth forehead, droopy head. Later comes slow and slurred speech, dysphagia (swallowing difficulty). This is when it becomes more serious – in a myasthenic crisis, a paralysis of the respiratory muscles occurs, which requires immediate assisted ventilation in order to sustain life.
The cause of MG is not well known or explained but is believed to have a lot to do with thymus gland. It’s that silly gland that no one really knows what its function is (it’s probably a cousin of appendix?). To be fair – it plays an important role in the development of the immune system in early life but disappears after puberty and, in time, gets replaced by fat. In majority of patients with MG, thymus gland remains large and is abnormal. It’s also prone to developing tumors, which sooner or later can become cancerous. The most common diagnostics for that is a CAT scan. For that reason, most patients undergoe a thymus gland removal surgery. But this is where MG is showing us her middle finger again, because thymus gland likes to grow back! Yup.
There are several therapies available to help reduce and improve muscle weakness and keep MG under control, like: drugs improving neuromuscular transmission, immunosuppressive drugs, chemo or plasmapheresis. The latter one is effective almost immediately, but doesn’t last long term. That’s why pharmacological treatment and thymectomy (removing the thymus) have the highest effectiveness and thymectomy might even lead to remission. It won’t get you cured though, for Myasthenia Gravis is an incurable condition, but it can be managed with the right treatment.
Please, forgive the long introduction especially, that I have only managed to write about 1 of my 4 disorders so far. It’s challenging to show someone the whole picture without going into too many details. For the last 8 months I’ve been barely walking, most of the time. I just started walking sort of normally yesterday, after a really rough week. Few days ago I had to sprint over half a mile from a parking on a top of the hill, to the train station on its very bottom, because all other parking spots were taken. I entered the train on shaky legs, crying, gratefully looking at a 90 min trip to NYC to get myself together and try to get my legs rested. Then I had to take a quick walk to the Polish Consulate (it’s not far from Grand Central but far enough for me), where I was turned around with nothing, because I had mistakenly scheduled my appt for March 16th, instead of February 16th. My fault completely but aren’t consulates there to help their citizens? My scheduling mistake was a result of yet another brain fog, one of too many I encounter every single day. I had another 90 min to rest on my way back, but quite the opposite to majority of people suffering from MG, resting doesn’t bring me any relief. Now imagine me climbing up that effing hill to get back to my parking spot. I cried in pain and I’m not ashamed of it. No one will understand what it feels like, until they face that same enemy. It took my doctors over 6 months to finally figure out it was, indeed, Myasthenia Gravis, because my symptoms were unusual. One doctor, performing a blood test said – ‘I don’t think you have it, but let’s just check it’ (for shits and giggles, I guess). The result showed an abnormality and the same test repeated 4 weeks later, was identical. I was eventually diagnosed through an EMG test, during which I was literally electrocuted and stabbed with needles for an hour. I wouldn’t wish that on anyone, although it still has nothing on a labor pain 😉
Besides Myasthenia, I also suffer from Lupus – one of the most vicious autoimmune disorders and its cause isn’t clear as well. It attacks internal organs, leading eventually to their failure. I’m lucky enough that my organs are, for now, untouched. I ‘only’ suffer from joint pains and have a very bad reaction to sun, which I love but it drains me out in a matter of minutes to the point, where I can’t move. I was only diagnosed with lupus in July last year and it took 6 months for the medication (Plaquenil) to finally start working. A medication that can cause serious sight damage and while being on it, it is required to see an ophthalmologist on a regular basis. A medication that I had to stop taking because it turns out it’s an antagonist to my MG medication and is known to interfere with neuromuscular communication. Putting that med away meant I was risking a serious Lupus flare up and was throwing away all those months I had spent getting used to it. Which pain between those 2 diseases would you rather choose?
As my luck would have it, the inevitable happened. The next day after stopping Plaquenil I could barely move. I felt like my body was on fire and it only kept getting worse each day. Finally I had decided I couldn’t bare it anymore and I got back to taking Plaquenil, risking who knows what kind of complications. As of today I’ve been back on it for the last 4 days and I can see improvement but I’m afraid. I’m afraid of the unknown that’s waiting for me.
I’ve been sick since I remember. I used to be a very active kid and later a teenager and right now a 15 minute walk is a challenge comparable with mountain climbing. I was always sick, dealing with headaches, back and legs pain. In high school I would skip classes cause I felt like I couldn’t keep going. I would tell my friends I felt sick with a cold and that I was going home. I never went straight home, cause my parents wouldn’t understand. And my friends never believed me either. But somehow I thought making up a cold would sound better than the truth which I was afraid would make me look like a faker.
5 years ago I finally got diagnosed with Fibromyalgia – a disorder attacking soft tissue in your body, causing widespread pain and an extreme sensitivity to pain and pressure. It comes with all other ‘fun’ gadgets like joint pain, overall body stiffness, sleep disorders, mood swings, trouble remembering things and focusing called ‘brain fog’ and many more. Unfortunately, I cannot take any medication for this condition. The only one that ever helped me, caused a terrible allergic reaction and the other 2 drugs made me want to scratch my brains out. There were days where I would just fall right when I was standing, cause you never know when the flare up strikes. I couldn’t move, breathe or talk. My husband had to carry me to the bathroom, feed me, dress me. Nothing seals a relationship like wiping your spouse’s butt…
The healing process after my c-section took way longer than in most of women. For a long time I couldn’t even get up to get my baby, cause I was crying in pain. It led to depression, cause I kept blaming myself for being a horrible mother, while my own body was trying to simply finish me off.
I’m a mom of a wonderful and beautiful hurricane named Hugo, who’s a little bit over 2.5. His probable constant picture of me is his mommy with a pain grimace on her face. I can’t fully enjoy going to the park with him, playing tag, jumping on beds, etc. I’m there for him when he needs me, always, as active as I can but since the Lupus diagnosis it’s only worse. I need to unarguably avoid the sun – now how do you explain a toddler you can’t swing him, because the swing is in a full sun and you’re risking a serious weakness? How are you going to go back home later? How do you safely drive your child home, when you can barely stand?
My last demon is a Celiac Disease. It’s that ‘popular trend for not eating gluten’. Except it’s not. People without CD, who eat gluten, don’t risk serious health complications, even cancer. I heard the diagnosis in March last year and I simply do not eat gluten, cause I would like to live to tell the tale. I have people to live for. For years, before I heard the diagnosis, Celiac Disease has caused a big damage to my body, including a clinical depression due to vitamin D malabsorption and blocking my serotonin source. The latter one is produced in our brains, but you’ll find majority of it in your gut. And when your gut is sick, you’re sick. Despite taking humongous amounts of prescription vit. D, its level in my body is still low. Not as critical as a year ago, but still not sufficient enough. To make things ‘funnier’, I can’t draw it from its natural source – sun, because of my sun restrictions due to Lupus and MG.
Why am I writing about it? Because, as irony would have it, you can’t see those disorders. I’m not missing a limb, I’m not deformed, glued to a wheelchair or blind. Regardless, I’m handicapped. Because I never know what a next day is going to bring me. Whether I’ll be able to get out of bed? Because even the slightest physical activity means days of pain afterwards. Because I cannot take care of my son like I would like to.
If you see me on the street, your first thought is not going to be – ‘oh gosh, she’s so handicapped’. And if you saw me parking in the handicapped spot (which I don’t, I never applied for a permit), you would possibly think I’m faking. And I don’t mean personally you or even myself, but the society. Because judging others comes to us so naturally and too easily. Because a big part of my friends doesn’t know details. Some of them might not be interested and others might be too afraid to ask and don’t know what to say. I’m not physically, or mentally, able to tell every single person in my life what I go through every day. And people have their own problems, to worry over someone else’s.
In 3 weeks I’m going for a CAT scan. Right now I’m living like I’m standing right next to myself, not knowing what to do. I try not to worry too much but I would also like to be prepared for whatever comes.
E.
What The Fibro?! 