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Fibro is a bitch

barbara-de-bordeaux-733301_1920I’m not a doctor, hence this is not a medical guide. If you’re looking for such, you won’t find it here. This is a layman’s blog, for laymen and is simply my way of self medicating my weary brain and exhausted body. Also, if you’re taking your condition too seriously, you might not find this piece helpful, as I believe I have a sense of humor and such I’ll be using here. Not that your circumstance is not serious, because we both know it is and it’s ruining your life on many levels. But you might feel better finding out you’re not the only person in the world having trouble holding a teaspoon, putting lotion on your hands or bending to put your shoes on. Since I’m one of those people, I’ve decided to deal with its absurdity and approach it like a joke – laugh at it, just because I still can. It is a funny name though – Fibromyalgia, isn’t it…?

So here I come, starting A Blog.

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Befriend your walking cane

 

20170608_103738When 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:

  1. 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.
  2. 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?:

  1. 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.
  2. 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.
  3. 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,

E.

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.

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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.

 

E.

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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?…

E.

 

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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E.

How celebrities ruined the gluten free diet for people with celiac disease

 

wheat-809441_1920I used to work in a restaurant. For quite some time, whenever someone called asking about our gluten free options on the menu and how we handled the cross contamination risk, I really didn’t know how to properly answer that question. To be honest, I didn’t understand why it was such a big deal to keep the gluten free food free of contamination. I would answer the phone call as politely and knowledgeable as I could, but truth be told, none of us really knew how to handle the ‘gluten free’ people. Back then, I didn’t know much about celiac disease (further called CD) but I knew that people suffering from it had to stay off gluten for the rest of their life. What I didn’t know, was how serious this disease was and how severe it could get over the years, if you didn’t observe the strict diet.

At that time I had been recently diagnosed with fibromyalgia and, not being fully satisfied with that diagnosis, I had even suggested to my then-rheumatologist to test me for CD. She didn’t see the reason as I never complained about the typical CD symptoms. Joke’s on her, because 4 years later a more knowledgeable doctor confirmed (from a bowel biopsy) that I, indeed, had a celiac disease…She might have not known that there’s more than 1 type of CD but that doesn’t change the fact she should have been more open minded to my condition and my lack of response to her treatment.

People, who are not familiar with CD don’t’ really know the whole broad aspect of that terrible disease. Yes, that’s right – TERRIBLE. What it does to your body and your brain is beyond some people’s comprehension. CD doesn’t only hit your guts. For most laymen it’s just a ‘stomach issue’ but if they did more research they would come across a list of symptoms and health effects that would blow their mind.

I am currently on a long term disability due to a Major Depressive Disorder. This kind of depression is caused by a chemical imbalance in my brain that had occurred during years of eating gluten and damaging my intestines. Because even though the serotonin is manufactured in our brain, you’ll find the majority of it in your GI tract. And when your GI tract is attacked by gluten and being inflamed from it, there’s no room for the proper production and absorption. Malabsorption is only one of the issues. There’s a whole ‘inventory’ of the long term health conditions like iron deficiency anemia, early onset osteoporosis or osteopenia, infertility and miscarriage, lactose intolerance, vitamin and mineral deficiencies, central and peripheral nervous system disorders, including ataxia, epileptic seizures, dementia, migraine, neuropathy, myopathy and multifocal leucoencephalopathy, pancreatic insufficiency, gall bladder malfunction. Amongst those we will also find malignancies like non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types), small intestinal adenocarcinoma, esophageal carcinoma, papillary thyroid cancer, melanoma. Not to mention joint pain, brain fog, trouble concentrating, bone loss, nausea, vomiting, seizures, migraines, dental enamel defects of the permanent teeth. There are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body. I will stop here… And all that from eating gluten and not knowing you’re sick.

Now, here’s where I get to the celebrity part of this article. In the past few years being ‘gluten free’ has become a trend. A fashion so desirable and admirable that people go off gluten because it’s in style. Because famous people do it. Seeing the easy target, food companies started labeling their products as ‘gluten free’ oftentimes wrongly, without submitting them to proper testing. For those of you, who don’t know – FDA let’s those manufacturers claim that something is ‘gluten free’ even though it’s really not. In FDA terms ‘gluten free’ means it contains 20ppm (parts per million) of gluten – that is 0.0002% of gluten. The same regulations are used in Canada and European Union. Some manufacturers take CD more seriously and keep their standards between 10ppm and 5ppm. The fact is, that the most sensitive commercially available test detects gluten down to 3 ppm, and those tests read ‘undetectable’ for anything lower than that. But there are people who will react to even the smallest amount of gluten and, despite being on a gluten free diet, they are not getting better. Eating the ‘gluten free’ food, poisoning themselves unknowingly. I myself have started wondering if I’m one of those people. I’ve been gluten free since March 29th this year and 8 months later I’m still not getting better. Celebrities made us believe that eating gluten free is wise and healthy. They opened the door for the very profitable market, trying to sell us healthy, gluten free food. Following them, restaurants started offering gluten free options on their menus. However, most of those restaurants are not equipped to serve gluten free food without the risk of cross contaminating it. Hence, their gluten free menu options are not for people with celiac. They’re a great, healthy choice for the non-celiac gluten avoiders but will do more harm than good to anyone with CD, who’d be brave enough to order it. When I mention I have a CD and ask whether a restaurant has something safe for me, some servers will roll their eyes thinking -‘No! Not another lunatic’, but others usually smile proudly and start telling me about their gluten free substitute breads, pastas, etc. Their faces change when I ask whether they use the same toaster/grill for the regular and gluten free breads, or same pots for pasta. The answer is always ‘yes’.

I know there are restaurants that will add a disclaimer to their menus, saying their gluten free option is not recommended to people with CD. And kudos to them!- I wish they all had enough decency to do that. I also wish more people would understand the importance of being off gluten when you have a CD. We simply don’t have a choice. We’re not trying to make your life more difficult – we’re just trying to NOT get sick and, in a long (or short) run, die of cancer. It’s not a lot to ask. We would love to be heard and understood. Celiac Disease is a bitch. It seeps its poison in you for years, before you realize you’re sick. And then takes away all your favorites – your comfort foods, your holiday cakes, your beloved pizza, fluffy croissants. In my case, it took away my beloved pierogi. I used to make killer pierogi – they’re one of the main reasons my husband is with me (wink wink). I haven’t been able to recreate the same dough using gluten free flour – it’s simply not possible. I am miserable and will keep trying but it will never be the same. Gluten is everywhere and some people with CD have to avoid anything made with gluten, not just food. Gluten has to be ingested in order to cause any harm (like from a lipstick), but some celiacs suffer from terrible skin sensitivity and have to avoid gluten in their shampoos, facial creams, body lotions and such. I myself am concerned about the drug industry. A vast majority of us, celiacs, suffer from more than one autoimmune disorders and have to be on lots of medications. Meanwhile, drug companies don’t have to disclaim every single ingredient used in the production and even if you contact them and they tell you they don’t use gluten for this particular medication, they cannot guarantee there wasn’t any cross contamination from another production line. I have recently eliminated certain drugs from my daily regime, the ones I decided I could do without. But I can’t quit taking all of them. There’s a chemical imbalance in my brain and it will remain as such for the rest of my life. I’ll be on antidepressants for the rest of my life. Does it mean I’ll be consuming gluten, that might be hiding in them? Will I ever be gluten free without becoming paranoid and eating just roots, shoots and leaves? How far does the madness go?
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E.

Rustic fruit crostata

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I hate fall. The only thing I hate more than fall, is winter. As long as I can see the beautiful, colorful foliage and blue sky I can tolerate the weather change that puts my body and brain into a weather shock. But as soon as it gets damp and cold and, hell no, it rains – I’m out. I’m out of this planet, please take me somewhere warm. Which is ironic, considering my recent lupus diagnosis and how avoiding sun is crucial in my condition. Nevertheless, I will still choose warm weather over cold rain even if I have to wrap myself in thick velvet curtain, head to toe, and stay away from the sun.

But back to fall. One of the few positive things about this horrible time (yes, I really hate fall that much) is the smell of a hot earl grey tea with lemon and honey and a fresh apple pie. Or basically anything with apples, as long as it doesn’t have a ton of cinnamon and sugar. I’m having really hard times liking American baked goods with apples, since in 99% of cases they are too sweet and have waaayyy too much cinnamon. It’s is supposed to bring out what’s best in apples, not overpower it completely. I find American cooking too sweet in general, but to each their own, I’m sure there are plenty of people loving it. When it comes to apple baked goods my math is simple: lots of apples (also mixed with other fruit) + a reasonable amount of sugar + dash of cinnamon. Less is more in this case.

Since my Celiac diagnose I obviously have been having hard time replacing my favorite goodies, whether from a store, or home made. I’ll never make a puffy and flaky apple turnover, or a deliciously soft apple strudel ever again. Yes, I can make those, just not the same way and the results will be quite different. But I’m not giving up. I’m actually determined enough to try and make a gluten free panettone cake this Christmas – call me crazy! So, long story short, this summer I came up with an idea for a gluten free crostatta and once again was proven wrong, because a gluten free baked goodie can be tasty!

This said crostata, being gluten free, will be a little tricky to shape and have its edges folded, but don’t worry – do your best and enjoy it, that’s enough.

Please, take note I recommend using vinyl gloves. They are crucial here, because a GF dough always sticks to your hands and is  impossible to either roll or shape. Latex gloves won’t cut it, the dough will stick to those as well.

WHAT YOU NEED:

DOUGH

  • 1 cup GF Bob’s Red Mill 1 to 1 Baking Flour
  • 1/2 cup GF Bob’s Red Mill Oat Flour
  • 2 Tbsp brown sugar
  • 3/4 tsp salt
  • 10 Tbsp chilled, unsalted butter, thinly sliced
  • 1/2 cup ice water
  • vinyl gloves

FRUIT FILLING

  • 1 ripe peach
  • 1 ripe pear
  • 1 medium sized apple (I prefer Granny Smith for baking)
  • 6 ripe prunes or other plums – if using big plums, 4 will be enough
  • bunch of blueberries (optional)
  • 1/2 cup brown sugar + 1 Tbsp
  • 2 Tbsp GF Bob’s Red Mill oat flour
  • 1 Tbsp unsalted butter, sliced
  • egg white, lightly beaten
  • dash of cinnamon

HOW TO:

    1. Using food processor, process flours, sugar and salt for about 10-20 sec. Put butter slices into the mixture and pulse until broken in pea-sized pieces, about 8 times. Transfer to a large bowl and break up any bigger chunks with your fingers.
    2. Sprinkle ice water over mixture and stir using a spatula until combined and no dry pieces are left. Transfer onto a counter and, using vinyl gloves, gently knead and shape into a 6″-wide disk. Cover with a plastic wrap and put in the fridge for at least 1h (and up to 2 days).
    3. Preheat the oven to 400°F. Line you baking sheet with parchment, transfer the dough disk onto the sheet and, using vinyl gloves again, form it with your hands into a 16″ circle.
    4. Halve plums and peaches remove pits, roughly slice.
    5. Peel the apple and pear and thinly slice, removing cores.
    6. In a large bowl, toss the fruit with flour, 1/2 cup sugar and salt and mix gently until fruit is evenly coated.
    7. Arrange fruit on the dough, leaving 1″ border clean.
    8. As carefully as possible, try to fold the edges. You won’t be able to overlap them, simply because GF dough doesn’t work this way. Just do your best to create some kind of edge, to keep the fruit from falling out.
    9. Sprinkle the fruit with diced butter, brush with egg white and sprinkle with remaining 1 Tbsp of sugar and cinnamon.
    10. Transfer crostatta into the preheated oven and immediately reduce heat to 375°F. Bake until fruit filling is bubbly and crust is golden brown, 45-50 minutes.

Let cool on baking sheet for about an hour before serving. Serve warm or at room temp.

Enjoy!

E.