toczeń – What The Fibro?!

Befriend your walking cane

20170608_103738 When I started my blog a year ago I had this aspiration to be a regular and frequent writer. As we all know, life is known for complicating things and changing our plans for us. Also, when I started writing, I was still in a deep depression and had decided pouring my thoughts out of my head would help me cope with what I was dealing with. I had mentioned before that my depression was induced mostly by years of living with undiagnosed celiac disease, causing a wrecking havoc inside my body and mind. It’s been a tough ride but I have managed to get that beast tamed enough to function on a day-to-day basis. Having that said, I wasn’t always in a good state of mind or physical capability to continue my writing simply because resting was more important to me. I would give in and let one illness or the other get the better of me and take over for few days. Because when you’re dealing with serious neuromuscular issues, most often fighting back will only make it worse. If your body can’t deal with walking around the house or even simply lifting your arm to reach for a glass in the cabinet over your head, that’s its way of telling you to stop and slow down, not to keep going. In case of Fibromyalgia or Lupus, non-excessive exercising like swimming, stretching, yoga and such, will definitely help keep your muscle tone and strength in place and give you the much desired energy boost. Even when you feel you’re about to have a flare up, you can try warming up your muscles & joints with some delicate stretching and it might come handy at the end. Unfortunately, when simultaneously you also suffer from MG, those activities can only take place if you’re in remission or currently are not experiencing any major symptoms.

Having MG means letting your muscles rest whenever they tell you it’s time. And they will communicate that to you that every single day, especially if you overdo with something. If you’re anything like me, once you feel better you want to catch up with everything that’s been piling up and you do all the shopping, chores, cooking, errands in one day. And then you realize what a stupid idiot you are for doing so, since now you’re about to pay for that, big time. Meaning, you’ll probably be immobilized for a day. Or two. Or more. You can’t know for certain because MG is not kind enough to produce a schedule it has planned for you. One week you need a walking cane, then next week you’re standing on a ladder picking sour cherries from a tree just to have a flare up few days later. You’re an Olympic Champion on Monday and then Tuesday your title is upgraded to an extra word, making it Special Olympics this time.

Yes, I do have a walking cane and I’m not ashamed. I’m a 35 yo woman with a walking cane and I’m owning it! I see peoples stares, sympathy and disbelief in their eyes. Some of them simply stare, the others try some small talk like ‘Your hips?’ or ‘Ohhh, my grandma was like that’ (errr, thanks…?) to which I always say ‘No, it’s a health condition’ and I cut it right there. I also have a handicap parking tag as of recently and while I had never seen myself applying for one, it has come to the point when I just had to. I don’t require a walking cane every day, only during really bad flare ups, but it’s not just about my compromised mobility. Having Lupus and having to walk through the entire parking lot of a supermarket in a full sun is the last thing I should be doing. Being able to park closer, on a designated spot, will now help me cut both the distance and the exposure time. That parking tag is not a privilege, it’s a necessity.

When I saw my rheumatologist few weeks ago, he kept reminding me I should be wearing a big floppy hat. I was covered shoulders to toes, but my head remained uncovered. There are 2 reasons I don’t wear hats, especially floppy ones:

I overheat when my head is covered. In NY heat and humidity I’m covered in sweat in a matter of seconds without a hat. Add a head cover and I’m drowning in my own sweat. As disgusting as it sounds, sadly it’s just what I have to live with. And overheating with MG is a big no no, since it can trigger the symptoms.
CCS – Can’t See Shit in hats, even the ones with small rims. My balance is funky, I have inner ear issues so if I lose my peripheral vision due to a head cover, while it simultaneously covers my ears, I don’t hear (hearing issues as well) or see cars in parking lots. I have that same problem with hoods in rain coats and it’s a miracle I’m still around. I should have been run over by tens of cars by now, lying dead in a puddle in Target parking lot, LOL.

So I explained that to my doctor, to which he said – why don’t you try a parasol then? Well, where do I start?:

I’m already walking with a cane (and that said cane is sitting next to me in his office, bluntly staring at him, almost hitting him in a face and he still seems to not notice it) and I have only one available hand left.
When I have my son with me, and a walking cane, I cannot hold a parasol at the same time unless I grow a third hand which I will hold my 3 yo tornado with. Simply – making sure my son doesn’t jump in front of a car is my priority right now.
I’m not capable of holding my arm up for more than 3 seconds at a time. I gave up blow drying my hair for that reason, so my hair looks like a bird nest, cause I’m still debating which compact hair dryer to choose – the cuter one or the more powerful one? Sadly, I can’t afford a $499 Dyson sonic hair dryer that weighs less than those five $100 bills I would have to use to pay for it. I know, right???

So, that being sad, my doctor didn’t really have anything else to offer. He’s a very nice, well mannered, old school Jewish doctor and I know he’s only trying to help but I need to weigh the risks myself. I cover myself with a 100SPF sunblock every day, before leaving the house. I wear long sleeve shirts, long pants and covered shoes in a 85F weather. I stay away from the sun as much as I can and I don’t leave the house if I don’t have to. I took on a new hobby, taught myself how to sew and recently made few long sleeve shirts myself!

I hate every single day because I can’t even take my dog for a walk and by the end of the day, when the sun is not as strong, I’m usually so drained I can barely move, so the walk is off the table anyway. So my dog spends majority of her days outside, in our backyard, which she loves and doesn’t mind but whenever she hears a word ‘walk’ in any conversation, her head turns sideways like her spine had just snapped, she gives me a ‘sad and cute’ puppy look and assumes it’s time to go. While my dog is outside, my cat sits at the door, yanking at it, crying and desperately trying to claw his way out of here, out of jealousy for the dog and also because he’s a cat, that doesn’t need an explanation. So, being a good mommy, I got a cat harness with a leash. And I taught our cat how to walk on it in front of our house and in the back yard. Streets scare the bejeezus out of him and who can blame him? So now, whenever the dog comes in or goes out, the cat is there first, ready to blast off through the screen door if he has to. It so happens I had to grab him by his back legs and drag him inside few times, as he almost made his way out. We do not keep our cat confined in a dungeon, by any means, but he’s a shelter-raised cat since his kitten days. We got him when he was 5mo and he’s never known wild and he doesn’t know what his natural enemies are and how to win a fight with another cat, or skunk, or racoon or even a stupid squirrel. Or a bear, cause that’s the type of a neighborhood we live in. Not to mention we live in a close proximity to a major highway.

OK, so putting aside my random rant about my animals :), I have recently done the math and it came to 70 doctor appointments in the last 16 month! I feel like I basically live at doctors’ offices. There are months, like this past June, where I had at least 2, if not 3, appointments each week. It’s exhausting, frustrating and, most importantly, costly. In 2 weeks I’m seeing a neurologist at New York Presbyterian/Columbia, in NYC. I already have a thoracic surgeon lined up there (for thymectomy) and just need to get a pre- and post-op neurologist care from a doctor who works in that hospital, so she needs to get familiar with my case first. I hope the surgery can happen soon after. I desperately need to give it a shot. I refused taking steroids and I’d rather have the surgery, than put that crap in my body. I gave up dairy and refined sugars and all processed foods but so far I’m not observing any major improvement from that. Damn, how I want chocolate right now!

Peace,

Myasthenia Gravis

Grave Muscular Weakness – that’s what it literally means. One day your legs just give out. You try to make a move and you catch yourself thinking – who the hell replaced my legs with stones?! Because it feels like you’re dragging bags filled with rocks behind you, instead of your extremities. You realize you need to stop every few steps to catch a breath and give your legs a break. Then you decide to keep going but your body is telling you to stop. And your body is right, because no matter how hard you try and how determined you are to get where you’re currently going, you can’t win with MG – She Knows Better. She will also decide for you whether she feels like opening that bottle of water, or holding your coffee cup, or even a fork. Me, for example, I get extremely tired just from holding onto a shopping cart. I’m not doing any acrobatics there, just simply holding the cart’s bar. And that hurts. My arms don’t like being in this particular position and there’s nothing I can do about it. I need a shopping cart in stores, since it lets me keep a balance and I can rest my body weight on it. Pushing it in from of me is a chore but at least I can sort of move. I said sort of, because I look like a cross-country skier, swooshing my legs behind me – I must be a great attraction to look at. Oh well, you can’t have everything – you either have great legs, or sick legs. I used to have great ones, now I have the latter 😉

I’ve been on this medication for about 7 weeks now. It’s called Mestinon and it’s a muscle strengthener. At the beginning it helped me quite a lot. I noticed improvement in how I walked and carried myself in general. After about 2 weeks it all started going downhill. Mestinon is known for causing nasty gastrointestinal issues – whether you take it with food or without. On top of that, there’s this terrible nausea you can’t get rid of, because it’s the medication that’s in your system and there’s nothing you can do/take to ease it. Believe me, I have tried and failed miserably. For the last 3 days I’ve been having excruciating nausea and one of those days I actually threw up in my own car, while driving it. With my son in the back seat, confused and scared. So I’ve been stuck at home now, unable to move without gagging and getting a throbbing headache. And honestly, my legs have been hurting for the last 4-5 weeks, just like I wasn’t taking any medication at all. So what’s the point really? Why do I suffer like this, if it doesn’t even help anymore? Upping the dose just made the nausea worse and symptoms never improved. The last time I took Mestinon was Monday morning – it’s Thursday now and I’m still experiencing convulsions…

My doctor wants to put me on steroids but I refuse to put this crap in my body. She also wants me to have my thymus gland removed even thought he CT scan didn’t show any changes but the surgery is ‘to be safe’. And I would rather have that surgery, than take steroids but I don’t think I can avoid one or the other. They also want to perform a plasmapheresis before the surgery, to boost up my energy and strength level for the time being. I have some time to think about it, since I’m leaving for Europe for about 6 weeks. I’m going home, to Poland, to repair my soul and body (hopefully) but right now I’m terrified of that trip, since I’m traveling with a toddler, all by myself. Will I manage? I’m responsible for the safety of my child and meanwhile I can’t even pull myself together and pretend I’m ok, because I am really not. I have 3 more days to try to get better, before we leave. If it’s the last thing I do, I’m gonna do it.

bransoletka

Invisible disability

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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.

lotus-1205631_1920 — freaking peaceful like a freaking lotus

Niewidzialna niepełnosprawność

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Mam prawie 35 lat i 4 choroby autoimmunologiczne. Mam kilka innych schorzeń ale to ta konkretna czwórka jest moją zmorą.

Najnowszą diagnozą (sprzed 3 tygodni) jest Miastenia – przewlekła choroba, charakteryzująca się nużliwością mięśni szkieletowych, np. nóg, rąk, twarzy. Nie dotyczy mięśni gładkich, takich jak jelita, serce, pęcherz moczowy, itd. W praktyce oznacza to, iż nie ma ryzyka zatrzymania akcji serca z powodu jego osłabienia. Ale! Miastenia ma swoje własne sposoby na uprzykrzenie życia i część z nich może skończyć się skutkiem śmiertelnym – ale o tym za chwilę. Jak przy każdym schorzeniu autoimmunologicznym, funkcjonowanie układu odpornościowego ulega zakłóceniu, wytwarzając przeciwciała atakujące własne komórki i tkanki organizmu. W przypadku Miastenii są to przeciwciała blokujące receptory acetylocholiny (neuroprzekaźnika), która znajduje się w złączu mięśniowo-nerwowym. W wyniku tej blokady, acetylocholina nie ma możliwości połączenia się z receptorem by wysłać impuls do mięśnia. Efektem tego jest jego osłabienie. Na razie nie brzmi jeszcze tak źle, prawda?

Miastenia zazwyczaj zaczyna się niewinnie – opadająca powieka, podwójne widzenie, wygładzone czoło, poprzeczny uśmiech, opadanie głowy. Potem pojawia się zaburzenie mowy, połykania. Mowa staje się niewyraźna lecz nie ze względu na znużenie, a na specyfikę tej choroby. W tym miejscu kończą się już żarty, bowiem jeśli dojdzie do zajęcia mięśni gardła, jamy ustnej oraz mięsni oddechowych, chory znajduje się w stanie zagrożenia życia, gdyż nie jest w stanie samodzielnie oddychać.

Przyczyny Miastenii nie są dokładnie znane, aczkolwiek wiele teorii skłania się ku udziale grasicy w jej powstaniu. Grasica, to taki durnowaty gruczoł, którego funkcji do tej pory nie udało się ustalić – to pewnie kuzynka wyrostka robaczkowego. U większości osob gruczoł ten zanika po okresie dojrzewania, jednak występuje on u większości chorych na Miastenię. Również w większości przypadków najczęściej prędzej, czy później rozwija się nowotwór, zwany grasiczakiem. Pojawia się jako niewinna narośl, by z czasem zmienić się w nowotwór złośliwy. Dlatego u znacznej ilości chorych na Miastenię wykonuje się diagnostykę klatki piersiowej – najczęściej tomograf, w celu rozpoznania charakteru nowotworu, jeśli takowy istnieje. Często usuwa się cały gruczoł nawet, jeśli nie jest zajęty, by zmniejszyć ryzyko komplikacji choroby. Ale Miastenia po raz kolejny pokazuje nam środkowy palec, gdyż u chorych na to schorzenie grasica lubi sobie odrastać. Ot tak!

Miastenię leczy się farmakologicznie, lekami stymulującymi przekaz bodźców nerwowych, sterydami, immunosupresantami, jak również chemią. Stosuje się również plazmaferezę, czyli wymianę osocza krwi – ta ostatnia metoda szybko stawia pacjenta na nogi, jednak tak samo szybko przestaje działać. Dlatego leki i tymektomia (zabieg usunięcia grasicy) są chyba najbardziej skuteczne, a po tej ostatniej wiele pacjentów przechodzi w stan remisji, nie oznacza to jednak, że pozbyli się choroby na dobre. Może ujawnić się znów w najmniej oczekiwanym momencie, gdyż nie jest chorobą całkowicie uleczalną.

Wybaczcie mi przydługi wstęp – a napisałam dopiero o jednym z 4 wspomnianych schorzeń. Ciężko jest przedstawić komuś obraz choroby, która cię wykańcza, bez wdawania się w szczegóły. Od 8 miesięcy ledwo się poruszam. Dziś na przykład stawiam kroki ruchem posuwistym, niczym narciarz na biegówkach, bo nie mogę unieść nogi na tyle, by nie czuć przeszywającego bólu i nie upaść. Musiałam przebiec dziś ponad 500 metrów z górki, z parkingu na pociąg, gdyż nie było nigdzie bliżej miejsca. Do pociągu weszłam na trzęsących się nogach, płacząc. Potem czekał mnie szybki spacer do konsulatu, z którego zawrócili mnie z niczym, bo umówiłam sobie wizytę na zły dzień. Moja wina ale czy konsulaty nie są od tego, by pomagać obywatelom? A moje gapiostwo wynika właśnie z tego, że choruję – mam bardzo duże problemy z koncentracją i “byciem obecną”. Po 40 minutowym szybkim marszu po Manhattanie miałam 90 minut w pociągu by opocząć. Jednak w moim przypadku, w przeciwieństwie do większości Miasteników, odpoczynek nie przynosi ulgi. Po dojechaniu na miejsce, musiałam się jeszcze wdrapać z powrotem na tę cholerną górę, gdzie stał mój samochód. Płakałam z bólu. I nie wstydzę się tego. Nie zrozumie tego nikt, ko nigdy nie stanął twarzą w twarz z takim wrogiem. Ponad pół roku zajęło lekarzom dojście do tego, że to Miastenia, ponieważ moje objawy były nietypowe. Test krwi zrobiono pod tytułem “raczej na pewno tego nie masz ale sprawdzimy”. Wynik, powtórzony 2 razy z tym samym rezultatem, mimo wszystko nie był jednoznaczny. Miastenię ostatecznie potwierdziło badanie EMG, podczas którego przez godzinę torturowano mnie, rażąc mnie prądem i wbijając igły w mięśnie. Nie życzę tego nikomu, aczkolwiek i tak chyba nie przebije to porodu…

Oprócz Miastenii, choruję również na Toczeń – jedną z najbardziej złośliwych chorób autoimmunologicznych, której przyczyny też nie są jasne. Atakuje ona narządy wewnętrzne i nieleczona prowadzi do ich niewydolności. Mam to szczęście w nieszczęściu, że moje organy są jeszcze nienaruszone. Dolega mi na razie “jedynie” ból stawów i ostra reakcja na słońce, które dosłownie osłabia mnie w przeciągu kilku minut. Nie mogę się potem ruszyć. Toczeń zdiagnozowano u mnie dopiero w lipcu ubiegłego roku i pół roku zajęło, żeby mój organizm zaczął reagować na lek na tę chorobę. Lek, który niesie ze sobą ryzyko utraty wzroku, dlatego trzeba być pod ciągłą kontrolą okulisty. Lek, który musiałam nagle przestać brać kilka dni temu, gdyż jest on znany z doprowadzania do zaostrzenia się objawów Miastenii i komplikacji. Odstawiając ten lek, zaryzykowałam wyrzucenie ostatnich 7 miesięcy w błoto i możliwością zaostrzenia się z kolei objawów Tocznia. I tak też się stało. A Ty, co byś wybrał/a?

Choruję, odkąd pamiętam. I choć zawsze byłam aktywnym dzieckiem, a później nastolatką, dziś pójście na 15 minutowy spacer, to dla mnie rzecz prawie niemożliwa. Zawsze źle się czułam, ciągle bolała mnie głowa, plecy, nogi. W ogólniaku zdarzało mi się nagle zerwać się z lekcji w środku dnia, bo wiedziałam, że nie dam rady. Koleżankom mówiłam, że poczułam się chora/przeziębiona, i że jadę do domu. Oczywiście nie jechałam do domu, bo rodzice by tego nie zrozumieli, a koleżanki i tak mi nigdy nie wierzyły. Ale wydawało mi się, że lepiej zmyślić przeziębienie, niż powiedzieć prawdę, wychodząc na jeszcze większą wariatkę i leserkę.

5 lat temu zdiagnozowano u mnie Fibromialgię – schorzenie autoimmunologiczne tkanek miękkich, objawiające się, m. in. chronicznym bólem, ogólną sztywnością ciała, zaburzeniami snu, nastroju, problemami z pamięcią i koncentracją oraz wieloma innymi symptomami. Niestety, nie mogę brać na nią leków, gdyż jedyny, który zadziałal okrutnie mnie uczulił, a po 2 kolejnych chciałam wydrapać sobie mózg. Bywały takie dni, że kiedy przyszedł atak, padałam tam, gdzie stałam. Nie mogłam się ruszyć, oddychać, mówić. Mąż nosił mnie do łazienki, karmił, ubierał. Nic tak nie cementuje związku, jak podcieranie partnerowi tyłka.

Mój okres rekonwalescencji po cesarskim cięciu był dłuższy, niż u większości kobiet. Przez długi czas nie mogłam nawet wstać w nocy do syna, bo przy każdym ruchu wyłam z bólu. Popadłam przy tym w lekką depresję, wyrzucając sobie jak okropną jestem matką podczas, gdy mój własny organizm próbował mnie wykończyć.

Mam w domu 2.5 letni huragan o imieniu Hugo, który ciągle widzi mnie wykrzywioną z bólu, z którym nie mogę pobiegać po parku, bawić się w berka, skakać po łóżku, itp. Jestem dla niego, kiedy mnie potrzebuje, cały czas obok, tak aktywnie, jak tylko mogę ale od diagnozy Tocznia jest jeszcze gorzej, gdyż ta choroba wymaga całkowitego zakazu przebywania na słońcu – jak wytłumaczysz to dziecku, które prosi byś go pohuśtała, a ty musisz odmówić, bo huśtawka jest w pełnym słońcu i ryzykujesz zasłabnięciem. I jak wrócicie do domu? Jak wsiądziesz za kierownicę i bezpiecznie dowieziesz?

Ostanią moją zmorą jest Celiakia – to ta “modna choroba na niejedzenie glutenu”. Tylko, że Celiakia to nie najnowszy trend, a poważna choroba. W marcu zeszłego roku usłyszałam diagnozę i nie jem glutenu nie dlatego, że to teraz popularne ale dlatego, że chciałabym jeszcze pożyć, bo mam dla kogo. Bo grożą mi poważne konsekwencje, z rakiem na czele. Niewykryta przez lata Celiakia spowodowała u mnie ogromne spustoszenie, a także depresję, ponieważ przez lata blokowala wchłanianie witaminy D3, a także dopływ serotoniny. Bo, choć ta ostatnia produkowana jest w mózgu, najwięcej znajdziemy jej w naszym układzie pokarmowym. A jeśli on nie funkcjonuje prawidłowo, to nie ma zmiłuj. Pomimo zażywania końskiej dawki witaminy D, ciągle mam niski jej poziom w organiźmie. Wprawdzie nie tak krytyczny, jak jeszcze rok temu ale nadal nezadowalający. Żeby było “śmiesznie”, nie mogę czerpać jej ze słońca, bo przed nim muszę chować się zpowodu Tocznia, jak również Miastenii.

Dlaczego o tym wszystkim piszę i dlaczego aż tyle? Bo, jak na ironię przystało, tych chorób nie widać. Nie jestem zdeformowana, nie jeżdżę na wózku inwalidzkim, nie jestem niewidoma, czy pozbawiona ktorejś z kończyn. A mimo to, jestem niepełnosprawna. Bo nigdy nie wiem, jak zacznie i jak skończy się dla mnie dzień. Bo nie wiem, czy dam radę wstać z łóżka. Bo każdy ruch ponad miarę moich możliwości okupuję ciężkim odchorowaniem. Bo nie mogę zająć się własnym dzieckiem tak, jakbym chciała.

Gdy zobaczysz mnie na ulicy, nie pomyślisz o mnie – O! Ona to jest dopiero chora. A gdybyś zobaczył mnie parkującą na miejscu dla niepełnosprawnych być może nazwałbyś mnie symulantką. I nie piszę tego konkretnie o Tobie, czy sobie samej ale o społeczeństwu, któremu tak łatwo przychodzi ocenianie innych. Bliscy moi znajomi wiedzą mniej więcej, co się ze mną dzieje ale bez większych szczegółów. Części z nich być może to nie interesuje, inna część boi się pytać, a jeszcze inni po prostu nie wiedzą, co powiedzieć. Bo przecież nie będę każdemu za każdym razem opowiadala, o kolejnym, ciężkim dniu. Ludzie mają swoje własne problemy, by martwić się o coś, czego nie znają i czego być może się boją.

Za 3 tygodnie czeka mnie tomograf klatki piersiowej. Żyję w tej chwili jakby obok siebie, nie wiedząc co ze sobą zrobić. Starając się nie zamartwiać na zapas ale jednocześnie być przygotowaną na najgorsze.

I jeszcze jedno, na koniec – jeśli czujesz, że coś jest z tobą nie tak, nie daj sobie wmówć lekarzowi, że wszystko z Tobą w porządku i jeśli się czujesz zmęczony, to trzeba odpocząć. Ja walczę o siebie już kilka lat. A choruję od 20? I dopiero od roku jestem w końcu objęta konkretnym leczeniem, a jeszcze długa droga przede mną. Rok spędzony na wizytach u róznych specjalistów, kilka razy w miesiącu, wlącznie z psychiatrą i psychologiem. Bo zapomniałam wspomnieć – mam przyznaną niezdolność do pracy. Na razie do września 2018 roku. Mam to szczęście mieszkać w kraju, gdzie nie upokarza się chorych, każąc im się czołgać i kajać przed komisją orzekającą, składającą się z lekarzy z dyplomami uczelni medycznej z Pipidówy Malej, a symulantom rozdaje się renty na prawo i lewo. Jesteś chory? – lecz się sam?…