The broken curtain call ~
Let me tell you a story. It’s something I’ve been through. Something that has made me better person than I used to be. And I hope, that it’ll stop haunting me after this.
The RA back ground
I’m going through so much pain by thinking about writing all this down, but I have to. I need to visit this pain once more so that I can let it be. My hands are already shaking while writing these first sentences, but anyways.
I have had encouragement from an unexpected person through her example to let it all out. I think it’s my time to seriously let go of the things that I couldn’t ever have control over; and that totally changed me as a person. This text is going to get really ugly, so if you don’t want to know one of the most heinous fuck ups in human body, don’t read. Just please. Don’t bother, as it is already enough hard as it is.
As many of you might know I was diagnosed with rheumatoid arthritis when I was only 8 years old. I almost lost my sight in my right eye since it all started with this heinous eye infection called iritis. I had to use glasses for almost 5 years to correct my sight and after that – luckily – haven’t needed to use them as my sight got better. Dealing with this disease seemed almost too easy to me: I got the best treatments and doctors to work with me from the early stages of my illness and I thank them now for everything. Without them I wouldn’t have the knowledge and the complete understanding of what’s going on inside of me. I know I have still the risks of getting iritis, I know the possibilities of loosing my sight still in future, loosing my movability and ending up in wheelchair. But they gave me all the tools to start fighting and it’s up to me now to continue it.
But that’s not secret to anyone who knows me. No. Everyone knows that I have this autoimmune disease and that I’m coping with it, always have. There was nothing in this world, which would have ever prepared me for what was coming; and ironically it all started through my rheumatoid arthritis which I thought was under my control.
Fall 2009 and RA
My RA was on remission for almost 5 years, 5 long years without any meds or painkillers. And as a naive child I thought I had defeated it. That it was gone. Poof! Vanished. Even though I knew that I have the HLA-B27 positive gene in my blood I felt like I won. I won this monster. Well… Not really.
It all started with a small rash on the corner of my eye. It was there a long time, until I told my mom to get me an appointment with an ophthalmologist. I knew something was wrong. And it was. There was another iritis on my left eye. They prescribed me steroid eye drops and I used them for over a month. Luckily my sight didn’t suffer at all. But it triggered something worse – my illness. My back started to cramp. Without doing anything it felt like someone had just throw gasoline on my back and lit it on fire. And I was in agony. They took MRI’s about it and saw changes in my back and SI joints. But I still don’t know why they didn’t change my diagnose to ankylosing spondylitis. I guess they just wanted to give me a few more years before sealing the deal… Ha. Anyway, my doctor prescribed me cytostatic rheumatoid drugs and the side effects were that I felt like someone had punched me in my face really hard. Just a few short months ago I was perfectly fine and now I was in agony all the time.
But it just couldn’t stop there, could it?
Fall 2009 and abscess
I’ve had this huge pain in my buttocks since the start of the spring 2009. I never really gave it any thought until the pain rapidly got really bad. I talked to my mom about it and she told me that I could get it checked out if I want to. But I didn’t.
Hindsight thinking that was a critical point. If I just would have had enough courage to go to doctor and tell them “Hey, I have this very bad pain in my buttocks and it’s been there for a while” I would have gotten out of this with fewer scars. I really think so. But oh well… Foresight is always murky.
Only after the pain became so unbearable that I couldn’t move anymore, my mom told me that it was time to go to the doctor. I couldn’t sleep at all that night before going to doctor. Any drug that I took – and trust me I had pretty strong ones already – didn’t help. Also the embarrassment about my pain, kept me awake through that night. When I got to the ER and the doctor checked my buttock she was baffled. I had this huge abscess right near my rectum. It was under this thick layer of skin, so that it wouldn’t come out by itself. She prescribed me more pain meds, antibiotics and scheduled me up for surgery late that afternoon. I went home, slept like an hour and went back to have it done.
I remember waking up and not feeling the pain. I felt like I was in heaven, although in diapers and on IVs for more antibiotics. The surgeon came to see me and told me that there was over 2dl of pus inside that abscess – no wonder I was in pain. He told me that I needed to stay in the hospital for three days with IVs for antibiotics and after that schedule a checkup appointment with a specialist. I went on with my life. I couldn’t sit properly for almost two months. Wooden chairs were my nightmare in class. Everybody made fun of me while I spent 5 minutes trying to figure out how to sit without any pain in the chair. I have never felt so powerless. Never even with my RA. I felt like I was being picked on – even by my own friends – by something that I didn’t have any control over. That wasn’t right… Right?
After a month I saw this specialist and he told me that the wound had healed well and that there was only a 10% possibility that it will reoccur. Again, I got this feeling that everything still wasn’t right, that I needed to schedule another checkup appointment. Call me crazy or pessimist but I felt like that 10% was going to be my doom. And as it turned out, it was. And I was only 16 when this horrific time of my life took place.
The wound wouldn’t heal. It started to leak almost immediately even though the doctor told me that everything was fine. I cried many nights wishing it would just heal, go away. My boyfriend told me that everything would be fine, but I didn’t feel that it would be. Then I conquered my fear of letting people poke at me like a rotting piece of meat and told my mom to schedule me appointment with my gastroenterologist. He was surprised that the wound was still leaking and scheduled to get an MRI of it to make assure of his assumption. When the MRI results came in and I saw the actual image… I was in shock the first few minutes.
My abscess had turn into about a 10cm long – 4 inches – fistula that had made a hole through my buttock to my intestine. No wonder it wasn’t getting better with all those bacteria getting into my bowels. I felt miserable. The doctor told me that there was nothing to worry about as he knew what to do. He was going to schedule me with a new surgeon and do the following: he was going to cut the fistula open again, pull this a type of surgical rope though it to my bowel and then down the bowel all the way out of my rectum. Then he would tie the ends of the rope together so hard that the rope will slowly start to cut through my flesh and muscles while getting rid of the fistula. I told him to go for it and set the appointment time as soon as possible. I got the 10th of the December. And oh boy I didn’t know what I had gotten myself into.
It was pure hell after I woke up that surgery. It felt like I had fallen into this hole and landed in the wonderland of pain. The pain was so intense that without high doses of strong medicines like morphine etc. I couldn’t stay conscious. I don’t really remember a lot from that month of time I was in that pain. But I sure as hell remember that I couldn’t walk. Any time I would move any muscle in my body I wanted to scream because of the shooting pain. I dreamed of sleeping the first two weeks when the medicine wasn’t even helping the pain – only kept me conscious. I’ve never counted minutes as much as I did then.
My life was my bed and bathroom and both were the pits of hell. I couldn’t eat; I didn’t feel like I needed to. My mom made me drink this smoothie that she kept making me from fruits so that I wouldn’t dry out. Every day I had to go to hospital so that they would clean up the wound. Once in a week they tightened the rope in surgery room.
I felt like a living hunk of meat which everyone wanted their own rotting piece of. And like that pain wasn’t enough my back pain kept bothering me. Since I was taking almost 2 grams of antibiotics every day I got a stomach virus… It seriously almost killed me or at least it felt like it. I felt like an old lady every time I walked… well, dragged myself to anywhere; stiff, in pain and pale.
From January 2009 to –>
After one and a half month from the first surgery I felt like I had woken up slowly from a dream. Did this really happen? I lost almost 10 kilos – 22 lbs – from an already tiny self and all the muscles from my legs. All. My arms were strong since I used them to get me up and move me around the little that I could and needed. I remember that first time, when I went out and walked over 6 km – almost 4 miles – through my city in cold winter. All grannies and kids walked pass me when I just put one leg in front of the other and smiled for the first time. I felt like I had woken from the nightmare. I felt the cold breeze on my face. I felt like everything has meaning again. Like every step I took I was closer to becoming healthy. Healthy!
My RA had almost taken over since I wasn’t able to take any medication for it. I was stiff but still moving. I was still alive and breathing. In February I went to see my gastroenterologist for the last time. I almost burst into tears when he told me that the wound had healed nicely and that I can move on. I might have some aches and pains for the rest of my life, but that would be normal. He also told me to check up in with him regarding my chronic Acid Reflux thing since he had found some changes in my esophagus during my last gastroscopy. I just kept nodding and hoping that he’ll just let me leave or I seriously might start to cry in front of him.
Walking out that hospital I felt like I left my old self in there and found a new me inside of it. Through that pain, agony and surgeries, through those ugly hospital rooms and medicines, I have found a new side of me.
The strong me. Me that I still can’t wrap my head around. Me who gave up, but didn’t. Who got through it and moved on or at least, hoped so. Who battled two diseases in silence at the same time and left to wonder who is she? Why is she the way she is? Why did she have to suffer?
I still feel that people have a huge issues talking about even some of the most common digestive problems. I was embarrassed for a long time what I’ve gone through and for nothing. I don’t need pity, never even though that I would get any. I just want to people to understand that there can be so many things wrong inside of someone, that you may even never know about it. You need to address the issues! If I would have had courage to go to doctor sooner I still believe non of this wouldn’t have happened.
No one should feel embarrassed about their pain. No one.