I had to face my mortality when I was diagnosed with the Chiari Malformation and going into surgery to remove a portion of my skull and 2 vertebra that it could have had a lasting effect on my ability to live life the way I had been, or result in complications that could have killed me.
After Jake went to Iraq last year, just 4 months after my surgery, I expected to feel run down having to do everything myself. No surprise that I had a hard time finding my niche.
After about 4 months of struggling I went to the doctor because I didn't feel like I was improving, I felt like I was getting worse. I researched my symptoms and asked for some blood tests including an ANA w/CBC. My ANA happened to be extremely high and from my research I fit the Lupus diagnosis pretty perfectly. I was referred to a Rheumatologist in Topeka and he diagnosed me with Sjogren's Syndrome and refused Lupus.
He was very distant and quick to leave the room, so I went to find a new Rheumatologist with better bedside manner and ended up in Abilene. His practice was very slow to actually get to see the actual doctor and I ended up really frustrated with him since I was put on steroids and not followed and they kept telling me my blood levels were "normal" when they weren't (I saw the results)
So we moved to Colorado and I ended up (total God thing) with a very dry but totally awesome Rheumatologist who took a while to get the appointment but I followed up 2 weeks after my appointment and now it's just a week between appointments because he seems to notice that I've got a few problems.
So, the big news I suppose is.....
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| Can't say I don't have a sense of humor okay? |
I have always thought it was what I had but no one else thought so and treated me like I was clinically insane, literally. In the last 9 months I've been on 5 different anti-depressants which left my emotions in either zombie or hulk stage, never level.
So with that, I'll be starting an IV infusion medication in the next couple of weeks, then 2 weeks after that, 2 weeks after that, and then every 4 weeks after that. I could go more or less depending on my tolerance and disease response to the medication. I am taking more steroid and added a couple of other medications to treat the Sjogren's symptoms including a pill and an eye drop.
Jake was working in the S1 shop on Carson before he out-processed to go to ROTC and worked with a female soldier who's sister had Lupus and passed away from complications, so here is my mortality staring me in the face.....again.
I know my heart and kidneys have been affected, I have a swollen lymph node in my neck and my muscles are much weaker than they should be. I have a lot of pain in my joints... wrists, fingers, jaw, elbow, shoulders, hip, knees, back, neck, or really I guess I should have listed the joints that haven't been affected that list is shorter.
The IV infusion will be much like Chemo, a lot of the same side effects, only with this one, my risk for cancer is higher because it will break my immune system down to give my attacked organs a chance to heal. I'll be more susceptible to infections and will likely lose my hair (good thing I don't have far to go!)
I have no intention of withdrawing from school or failing.
I have to restart my heart monitor on 07Sept and I will find out a lot of blood work that day also. I have many other doctor's appointments, 5 I can think off the top of my head in that 2 week span.
Our life will change quite a bit in the next few weeks with the turn in medical things. I have a couple of consultations for a hysterectomy and breast reduction to take some of that stress off my body. Jake has had a vasectomy because we are certain that we do not ever want to have another biological child. I have zero desire, maybe even negative desire to ever be pregnant again, as long as I live. I'm quite paranoid about not being wholly protected myself and with my history of abnormal paps and various biopsies that I've had to have, I don't want to risk the cervical or ovarian cancer, so I'd rather just evict those organs completely. If I were to get pregnant while on a few of these medications it would be very detrimental to myself and the child so I'd rather just not play with fire.
I have to say that when I first heard the words at the doctor, I was pretty happy. I felt a victory. I advocated for myself, I didn't back down and even though it took a year, I found someone who would listen and look at the big picture.
I'm so happy to be in Colorado. I am in awe of the beauty of the area, the gifts that God has given me through some bbbbbbeautiful snapshots with the sunset, the moon in the clouds, haze in the mountains.
Please hear this song and know that while I may get nervous, I am not afraid.
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