I've been trying to figure out a way to channel these...these emotions I guess you can call them. The ones I get from being sick, and knowing, and trying to accept, that I always will be.
In some ways I guess it's a good thing that we found out what's wrong because let's face it, for as long as I can think back I was always getting something. However as grateful as I am to be alive right now, it's really hard to count your blessings knowing full well that for the rest of your life you could get the smallest cold and be sent spiraling out of control, which is exactly what happened this week leading me to this point here.
I plan to use this blog as a way to vent and possibly share my story with people who might know what I'm going through and possibly find some guidance along this journey. Although I have amazing support from family and friends, there's nothing like support from people who really know what you're feeling. So without further ado, here is my story.
In April of this year I got pneumonia for the umpteenth time just before my friends wedding. I went to the doctor and got my monthly dose of penecillin pills (I say monthly because I seriously was getting some sort of chest, ear, nose, sinus, all of the above infections almost monthly). They seemed to do the trick, the wedding was a smashing success and I came home unprepared for what the next 6 weeks would hold.
I started getting really tired, and not just a little, but I basically went to work then came home and didn't move all night. The nights when I had my son I would force myself to be a good Mommy which meant the nights without him I was especially tired. I thought I must just be stressed and because my son is notoriously horrible at sleeping through the night etc. etc. I could find a million reasons why I was tired, and because I just finished the penecillin I thought for sure I wasn't sick so why go to the doctor.
That's when I started peeing blood. Sorry for the graphic details but after having a child and this ordeal, I'm not shy. So to the doctor I went for what I assumed to be a bladder infection. After 2 rounds of meds over 2 and half weeks, I was still passing blood, a lot of it, and I told the doctor finally that I was not taking another pill until she figured out two things; 1. Why the meds didn't work and 2. Why am I still peeing blood. She rifled through my numerous bladder tests, again one more thing I was getting almost monthly, and realized that it was not normal (DING DING DING!!!) So an Ultrasound was ordered immediately.
I was getting sicker and more tired by the day. My Ultrasound showed that I had some blood around my kidneys and she said I need to see a specialist. A referral was put in and I just had to wait patiently. In that time I thought I was dying. I had to move and if it weren't for my wonderful friends, I don't know what I would have done. They packed me, moved me and even unpacked some for me. But that's getting off track...
On Friday in late May the doctor told me to keep hanging in there, that she marked my case as Urgent, but with over a million people in one city, I can't imagine that means anything in a specialist's world. That Sunday I woke up with the worst nose bleed I have ever had or seen, I won't get into the details but come Monday I called the doctor's office and left a message about what happened. She called back immediately and sent me to the Emergency room at the hospital with all my test results etc.
After they did all their checks, read my file, looked at my results I was admitted. Suddenly I am cut off from everything. It's a scary feeling. My son was safe, work was notified but still, it's a horrible feeling. After a kidney biopsy and being poked and proded more than I ever could wish on my worst enemy I was diagnosed with Wegener’s granulomatosis, I was in renal failure and had one hour to chose between two treatments; one would mean no more reproduction, two was not so harsh in that way. So I picked two and away we went.
I was in the hospital for a week, lots of medicine and bloodwork. My creatinin level was 350 and kidney function based on my weight and levels was 10 percent. The treatement I took seemed to take luckily and I for now am free from dialysis and I hope it remains that way. I received more treatments, and am on a buffet of daily medications and diet.
A little bit about my disease...
Wegener's is an incurable form of vasculitis (inflammation of blood vessels) that affects the nose lungs, kidneys, and other organs. Due to its end-organ damage, it is life-threatening and requires long-term immunosuppression. Five-year survival is up to 87%, with some of the mortality due to toxicity of treatment.
I highlighted that last line because I wanted to comment on how when I was diagnosed I still really didn't know much about it other than that's what I had, and how we were going to treat it. When I got out and researched it and saw that, I can't explain the panic I felt knowing one that it was incurable and just manageable, and two, that I could have died! And that I have to play everything so safe to ensure that I don't go before my time.
My kidney function has improved a lot, and for tonight that's really all I have in me to type. To say it's over would be great but it's hardly begun. It's emotional, financially hard, and mostly just discouraging because so many more things have come out of this that I'll be sure to get into as days go by.
If you're here because you know me and just wanted to see what I've been up to, thanks :) And if you don't know me but know my pain, please comment so we can get in touch!
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