They say there are 5 stages of grief. 1. Shock/ denial. 2. Anger. 3. Depression 4. Dialogue and bargaining. 5. Acceptance.
In May when I was diagnosed with Granulomatotis with polyangiitis (or Wegeners granulomatosis) I began mourning the loss of the life I *thought* I would be living. You walk around, just assuming you will live until your 90 something , you will do all normal things, watch your children grow, become a grandparent, etc. You don’t assume that all of that will be different or possibly not even happen. I felt a deep sadness when I started researching my disease and the shock took over. For me, it was hours of crying every single day, for weeks. It slowly turned into episodes of crying and now I can honestly say I only let that happen when I’m alone, usually in the shower and thinking about not being a mom to my 3 babies. I denied it for a while, thought possibly the doctor was wrong, maybe he missed something or maybe he mixed me up with someone else. I so badly wanted it to be someone else. The anger for me has been a combination of … angry at the disease itself and prednisone induced anger. My overall personality has changed because of this “devils drug” … My temper is shorter, my outbursts are more frequent, my emotions are all over the place, and my hunger… Well that’s in a whole category of its own. The prednisone is a steroid that I *have* to take and it gave me a “moon face” and is the reason for a 40 lb weight gain since August. (Just writing that brings tears to my eyes. ) I’ve struggled my whole life with my weight and now, every morning I have to put 4 pills in my mouth that I KNOW will cause me to gain weight and become so hungry I swear I can’t control myself. That brings me to the next stage, depression. I feel sad that I don’t recognize myself in the mirror, I feel sad for everyone around me that has to look at me getting bigger and knowing there is really nothing we can do about it until I taper off the meds. I avoid mirrors EVERYWHERE… I avoid the microwave, the car windows, any place that I can see my reflection, I run from. The tiredness brought on by the disease itself can be overwhelming and I feel like little things take so much out of me. Thanksgiving day I hosted and had my whole family over. My husband and I did all the cooking and for 3 days after, I could barely get off the couch. It’s hard accepting this and feeling like I am 80 at 26 years old.
This all sounds so negative, and really it has been. I haven’t been positive about much of it. This past week my husband and i went back to the Cleveland Clinic in Ohio to see my specialist. We left there with something that we didn’t even know we had been so desperately searching for… Hope. I finally feel this weight lifted and I see a light! She said I am not in remission and the meds I’m on now are just not doing it. She is requesting that I do infusions of rituxan and then my maintenance drug (which I will stay on forever) will be imuran. The infusion will be at a local oncology center and will last anywhere from 6 to 10 hours. I will go through 2 rounds and fingers crossed… That will put me in remission! After all is looking good, then I can taper off the steroids (my ultimate goal). I am feeling so hopeful and so excited for what this can mean for my family. Maybe some normalcy… That is what I crave right now. I want to feel somewhat like my old self again. I have not felt well for an entire year, and now I can honestly say that I think 2014 will bring some more hope and more health! So here is to rituxan being my answer and positive good days ahead! That is my update, it’s been a while, and who knows when I will write again but for now… I had to share some uplifting news!