lupus – 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?…

It’s been a bumpy ride

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2016 is coming to an end and it has been quite a year. First and most of all, constant battles: with myself, my own health, my self consciousness and many more. 9 months ago I called my supervisor at work and told her I needed a personal day. That was the morning after I had broken down in tears and told my husband I wasn’t well. I had reached the point where I couldn’t help myself any longer and required a professional help. It was after yet another 11h spent at work, when I came home at 9pm to see my almost 2-year-old son already asleep. I was hardly seeing my son at that point. I was working crazy hours in a corporate environment, leaving my house in the morning, coming back at 9pm just to take a shower and go to bed. It was a new job so I was really trying my best but that best couldn’t put up with the corporate nonsense anymore. I never went back to that job again. The job itself didn’t cause my depression – that’s the doing of serotonin and vitamin D deficiency, thanks to celiac disease. But it made everything worse. I was like a ticking bomb with a smiling mask, just waiting to explode. No one knew what was going on with me. Not a single person could tell what kind of struggle every single day was for me. My husband could have had his own suspicions but he never said anything. I was living in a nightmare that I couldn’t wake up from.

9 months later I’m in a much better place. I’m not yet cured. There’s no cure for celiac disease. Considering that I need to avoid sun due to lupus, and without sun I’m not getting enough vitamin D, my depression might never go away. It can gradually get better, since I have it under control now, but I might have to learn how to live with it long-term. In terms of fibromyalgia, I’ve already accepted there’s not much I can expect to be done for me. I’m either allergic to the one medication that really helped me, or I respond poorly to other ones. According to my rheumatologist, my recent bloodwork shows that lupus has been quiet for a while and whatever discomfort I’m feeling right now would be the fibro doing. There’s a lot going on and that’s really not what this post was supposed to be about.

I can’t wait for 2016 to be over. It’s been one of the most miserable years of my life and looking at what’s happened all over the world during the last 12 months, we should all be happy those days are behind us. But what’s next? More wars? More political shenanigans? More wonderful artists dying?
I wish I knew what 2017 was going to bring. Wait…do I really want to know? I’m even afraid to think about it. When I look back at the last 5 years of my life, strangely majority of significant life events happened in first quarter of each year:

I got married in February 2011. Obviously that was a happy event. Unfortunately we lost my husband’s father only 6 weeks later
In the beginning of 2012 we found out my husband’s mom had an untreatable brain tumor. We lost her as well few months later
In March 2013 I got pregnant for the first time, only to lose that pregnancy 3 months later
On February 14th 2014 my father died
In March 2015 my life has turned upside down and ‘thanks’ to few medical diagnoses along the way, hasn’t been the same ever since

Except for getting married, those have been quite rough beginnings of each of those years. I can’t even imagine what it’s going to be this time…

Whatever 2017 brings you, may the part of it be peace of mind, love and health. Tons of health. Just in case you need strength to kick its ass 😉

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Wake me up when September ends

September was a real roller coaster – both emotionally and physically. Challenging on many levels, with lots of ups and downs. I’ve tried yet another antidepressant and the first (and the last) pill made me so catatonic I couldn’t even pretend to be present. I couldn’t be there for my son or anyone else – luckily it was a Saturday and my husband wast here to help, since I slept through the entire day. After consulting with my doc, I never took the second dose and that lead to a major depression onset due to withdrawal, after only 1 pill! A depression so strongly clinging to me that I just cried the entire day and I was terrified, hoping this would only be temporary. After that fiasco, I was put on Adderall (for those who don’t know, it’s basically amphetamine). The first dose made me sleepy! I kid you not, I couldn’t be a drug addict even if I wanted to 😀 If speed didn’t give me the energy boost, than what ever would? Luckily, increasing the dose did its job and I finally started experiencing what I have long forgotten – having some energy. It was like a miracle – all of a sudden I wasn’t awaking sore and stiff (increased dose of muscle relaxants helped here as well), I felt like I could move mountains, I would take my son to the park every day without feeling like I was about to pass out. I had energy to play and goof around with him and I started feeling happy again. It was this funny feeling of an inner joy, like your insides were smiling 🙂 Little did I know it wouldn’t last long and here’s where being a woman strongly works against your getting better. My mood change and irritability started just around the same time when my cycle was about to begin and I was experiencing an extreme form of a PMS. Breakdowns, weeping, yelling, wanting to strangle the first person who stands in your way, etc. I do go through a pretty severe PMS every month but it’s hardly ever this drastic and uncontrollable. That only makes me wonder how many other women suffering from depression go through this hell during their cycles because of the medications they’re on. I’m confident it’s the drugs, because it changes every time my meds change and it’s a brutal mood swing. And not just for me, but also for my two men (hubby and son), who have to watch it and get through it…alive…

I have also found a great PA specializing in treating Lyme disease. In the last 15 years I had only been tested twice, by 2 different doctors, with a negative result. But if you know anything about Lyme, you know it doesn’t mean anything. And I’m not trying to add yet another disease to my current repertoire, but I need to cross out even the slightest possibility and better to be safe than sorry. I’m currently on a third week of antibiotic treatment and have 3 more ahead of me. Not that having to take more antibiotics was my life goal but I was ready to risk that if there was even a slim chance of getting better. This is my 4th set of antibiotics in the last 3 months (I had 3 sinus infections meanwhile) and you can only imagine what it’s doing to my body, but I’m sticking to it and naively (?) hoping for best.

My rheumatologist recommended I go and see a neurologist, after I had told him about my fibro flare ups, and how according to my husband, they look like some sorts of seizures. The doc said that just because I’m in a lot of pain during those episodes, it doesn’t sound like a typical seizure, but it’s something that should be checked. It feels like I’m suddenly trapped in a body that won’t listen to my brain. Everything shuts down, the engines stop working and I have no control over my body for quite a while. I drop on the nearest couch/chair, sometimes floor, lie down and wait for it to pass. Meanwhile I’m unresponsive even though I’m conscious. I can’t answer my husband’s questions even though I can hear him. I can’t get my mouth to open, still my brain registers everything around me however. My limbs become lead-heavy, my eyes and legs begin to twitch (restless leg syndrome), and I’m overwhelmed with the achiness of my entire body. That kind of pain is very difficult to describe and only someone who goes through the same, would know the meaning of it. Imagine your sore muscles after a good work out at the gym. Multiply it by 10 and now imagine your body is a medicine ball and you have to lift it and keep its weight without breaking. This is not a very accurate description but it’s the closest I can think of. Each ‘attack’ lasts for anywhere between 30 and 90 minutes. After it’s passed I’m extremely exhausted and all I can do is to crawl to my bed and try to get some sleep. The next day I’m still hungover from the pain.

Right now I’m on so many different medications, that I started turning it into a joke and say it’s a miracle I don’t glow at night yet. Truth to be told, I don’t’ know if I need them all. Some of them help, the others I’m not so sure of. But if there’s a slightest hope for improvement, I’ll take my chances and will serve my family as a night light, once I eventually do start glowing at night 😉

I recently took a photo of my pills organizer. Those are not even all of the meds I take. If only they had any nutritional value, I wouldn’t need food to survive… 20160923_181101

New month means new life turns and adventures. Here’s to a happy October! (I hate fall )

Brain of pain

Next week I will have been on Plaquenil for a full month. All this time I had my hopes up and I have been let down. I think that secretly I was hoping for a miracle drug, gasping for air in between bad days, wishing for a change in my life. That change hasn’t happened so far. Lupus is still kicking my ass and every day I wake up sore, swollen and overwhelmed. I wake up fatigued, because even though for the last 3 years I can finally manage to sleep through the night, my dreams are extremely exhausting. They’re so vivid, realistic and mentally challenging it feels like my entire body has been working out at night, my brain including. And it never stops…My brain has been working out really hard the last couple of years, after fibromyalgia diagnosis, and I eventually realized that I wasn’t turning stupid, I was just having brain fogs. I had to put twice as much time into processing certain things in my brain in order to comprehend the reality around me. While I couldn’t focus on more complicates things, like a science show on tv or how to build a helicopter out of a toothpick, I was crushed by the fact even the simplest shopping list was a challenge. Every single thing around me was taking up its glove to combat me in most ridiculous duels. I would usually lose miserably. I couldn’t focus on anything, couldn’t remember a thing. I couldn’t, and still can’t remember whether I had just taken my medication or not. I have reminders set for those things and I still forget. I need a reminder for a reminder… I’ve mentioned that before that I’m not capable of learning new things, especially when they require some brain engagement, like reading, soaking up some knowledge, new words, etc. It’s tragic, if you think about it. I’m only 34 and for the last few years I’ve been trying to learn French, giving up few times because I couldn’t keep up with the new words and rules. It’s a personal tragedy for me, because I used to be this hyper organized person, who was never late and who remembered EVERYTHING.

I keep my brain working by reading books, but even that is a challenge. Another dare is to make my brain tell me to do the stretching every morning. I developed my own stretching routine, for all my sore joints and muscles and it’s very helpful. If I skip my exercises, and that happens a lot, I need over an hour each morning to get better and feel energized and flexible enough to start my day. Routine is so extremely important in this case and, guess what? Yet another thing I forget, duh!

I feel like I’m 80 years old, most if the time and I literally haven’t felt well for the last 15 years. I don’t even remember what it means. So I do what most of us does – suck it up and keep going. And every day I’m more and more tired and I feel like I can’t keep doing it any longer. And then the next day comes and same things happen. It’s a groundhog day, every day and it gets even worse when you have kids 😉

My depression hasn’t really subsided much yet, although I definitely feel a little better than 5 months ago. But other than not crying every day anymore and being a little less helpless, I don’t feel that much of a change. I’ve tried 5 or 6 different mood stabilizers and antidepressants. Most of them made me worse almost right away. Wellbutrin seems to be doing the trick right now and keeping me stable but it’s not making me better. And it’s really hard to tell where the depression ends and lupus and fibromyalgia start. They have so many common symptoms you have to target each of them at a time and hope to aim well.

Just today I was thinking about going back to work, maybe finding a different job and while I could use some adult company and just get out of the house, I couldn’t imagine myself doing it. There was a blank space where the specified career path was supposed to be and I couldn’t fill it with anything. I’m not ready for the world yet. I would like to, I yearn for it and still I can’t at the same time. My dear friend has just recommended me a book, that she had read and found useful and effective. I got it at the local library and was shocked to discover it was first published in 1909…I guess I’m about to find out how timeless that book is and for everyone else willing to find out as well, it’s How to stop worrying and start living by Dale Carnegie.

A pill to make you numb, a pill to make you dumb*

Tomorrow will be a full week since I have started the Plaquenil treatment. Results so far? None. I don’t feel any difference at all. I might have a tiny bit more energy in the middle of a day, but other than that, no fireworks here.

Every day I wake up feeling, like a steam roll has driven all over me couple of times throughout the night. My joints hurt, ache, scream. They’re incredibly stiff. And the pain that goes with it is surely hard to handle as a first thing in the morning. I used to be a morning person but that’s not a case anymore. I used to be this cheerful, full of morning energy girl and my husband would almost hate me for that, since he would drink his coffee from the mug that said ‘ Don’t ask me until I’ve had my coffee’. Nowadays I get up cranky as hell, bent in half from all the joint pain and unless I stretch the hell out of myself, I have to wait at least an hour for it go go away enough for me to start another day. And I’m not wired for that day at all. All I long for, is my bed, to be back there, pull the blankets over my head and sleep all day. But I have a toddler, so that won’t cut it.

And so I start my day with a handful of pills:

stomach medication (for gastritis)
2 antidepressants
first dose of Plaquenil
allergy medication
flax seed oil pill (Omega 3 acids for my eyes, by ophthalmologist order)
stool softener that makes you mentally feel like you’re 80, cause why would you have to take it at 34? But the truth is, autoimmune diseases f…ck up your digestive system and I have 3 of them, so…
prescription eye drops (Chronic Dry Eye)
prescription steroid nasal spray (to prevent sinus infections, that I get at least twice a year)
also, in the last 2 months, I’m on a 3rd antibiotic course

I think that covers it for now and, of course, I realize it might not even be close to how many more most of you have to take.

Stuffed with all that ‘goodness’ that’s supposed to come out of those drugs, I start my day. And if they only added any nutritional value to them, I wouldn’t have to have breakfast, getting all the nutrients from the pills.

We take all those meds and most of the time they don’t make us feel better, so why do we even take them? Hoping, that ‘maybe’ ? I’ve been through 5 different antidepressants since March and nothing is really doing its job. I realize it takes time, but most of them made me extremely sick or anxious or gave me headaches beyond any painkiller. And perhaps all it takes to cure my depression, is to get rid of the symptoms of the autoimmune diseases that are eating me away, but that’s not happening either. So I wait again, patiently, wasting my life meantime, while I could be spending it fruitful, playing and goofing around with my son. But I’m so weary, fatigued and simply exhausted beyond any understanding, that all I can do recently is to put some educational tv on for him and be with him and make sure he doesn’t fall of the chair/sofa/tv stand/table/dog cage – pick one.

I upped my dose of Plaquenil last night to twice a day, now that my body has gotten used to it. Maybe it will finally kick in and help me feel like a human being again? Because that last 15 years of my life have been a real torture and just a simple vegetation. And who wants to be a vegetable when they can be human?

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*Marilyn Manson ‘Coma White’

I’m a wolf

No, I don’t have fangs, or fur, neither do I howl. Although right now all I can think of is howling to the moon, out of misery that is. It’s been suspected for few months now, that I might have lupus but we only decided for sure today to start the treatment. ‘We’ meaning my rheumatologist and I, and I just took my first pill of Plaquenill. the last few weeks have shown that every time I experience an exposure to sun, I end up sick. Whether it’s dizzy, or fatigued or nauseated, there’s always some side effect to me being in the sun.

Me, a person, who loves sun. Who could spend an entire day in the garden, or reading a book in a lawn chair, or simply on the beach. At least I used to be able to do those things without any issues, until few years ago, when I started connecting the dots between my being in the sun and getting terrible fibro flare ups. And only recently I connected those dots completely, to receive a full picture and the picture said – no more sun for you, dear.

So here I am, crying, freaking out, trying to figure out my life without sandals and in a big floppy hat throughout the summer. How am I supposed to do my gardening now, being all covered up? I’m going to melt in the sun and simply swim out of any clothes I’ll be wearing. How am I supposed to be a mother to my son and take him to the park, pool or play with him in our backyard, without getting sick after 5 minutes?

I haven’t digested this whole thing yet. I was ready to start a treatment just for a simple reason of hoping, to finally get better. But only when it stroke me, that – here it is, here’s your first dose of lupus medication – I felt miserably upset, if there’s such a thing.

I have recently gotten in touch with a girl, who was on a lupus medication for 3 years and ended up almost losing her entire sight. Her vision is completely messed up right now, irreversible from what I can tell, but she’s hoping to find a way to fix it. Her doctor had never worn her about the side effects of the drug, so she couldn’t’ have known what to pay attention to and to get her eyes tested every 6 months, while being on that drug. I’m hoping for her, she can find a way. I’m squeezing all my fingers and toes and wishing her the best luck. Because if, and let’s hope it’s ‘when’ rather, if she finds a way out of a impaired vision, there’s hope for all of us.

Now I can start living like a real vampire, hidden from the light of sun, coming out to live after sunset. Isn’t that exciting???

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