But life went haywire for me. So, I figured I would use it to update family, friends, and those who care, about my journey.
Once a place to rant, now a place to make my statements, and tell my story. I am afraid I won't be able to speak that well, so typing is what I have for now.
It is the 3rd day of a new year. A new decade for that matter, and I just turned 29 years old. I have a beautiful little girl, Patience Grace Day, and the best husband a girl could have, Douglas.
And, I am now 4 months pregnant with our second child. Timing never was my best quality.
So, I'll start from where I believe this all started...I assumed this started 18 months ago, but armed with new information, I had some previous medical issues that may now be the real beginning of this hell I now call my life.
I found this in my research, and with all the fluff about the appendix having a purpose, I am convinced that my auto immune disorder is connected to my recent bout with Chronic Appendicitis. (its kind of a long read, to continue to the story, just scroll down)
http://www.medical-hypotheses.com/article/S0306-9877%2804%2900272-5/abstract
So, 3 years ago, I dealt with 14 months of pain. Horrible abdominal pain, that was treated as more than one condition. I was operated on 3 times, was found to have Endometriosis, which I was treated for, (with a medication that shut down my ovaries)...I was told by countless doctors that they had no idea, sent to specialists, and was referred to a Psychiatrist by the top pain management center in the State of Maryland. I had to be crazy, all because they had never seen it before...
Anyway, I took it upon myself to research, become my own advocate, and I'm glad I did.
I had plenty of backup and help throughout this. Doug kept the house afloat, and Don (my friend and roommate at the time) acted as a shoulder for Doug, and a backboard for me to vent, and bounce ideas off of. My friends Chris and Matt helped me cope with my fears of being on narcotics for as long as I was.
I printed a list, of 118 conditions that had my symptoms, or variations of them. I started at the bottom, and requested test after test. My 3 laparoscopies covered most of the testing, due to all of the blood work they had to do beforehand.
Anyway, after 14 months, I convinced a surgeon to take out my appendix. I had EVERY symptom, except for inflammation that SHOULD show up on a CT scan. I went into his office, armed with studies from medical journals, and a signed document stating that I would not sue him if in fact he pulled out a healthy appendix.
I was booked for surgery 2 days later.
Since this was my 3rd abdominal surgery in under 10 months, I was a professional patient at this point. I knew what to expect, how long I'd be there, and exactly what to tell the anesthesiologist. (I'm one of those people that gets sick, no matter what, after General Anesthesia)
My appendix was removed, and afterwards, my surgical pain was pretty bad. I had built up a pretty massive tolerance to Percocet, (due to the daily pain I was in) I was taking 10mg pills for over 6 months now, and they only give 5 mg pills for surgical pain. Needless to say, I ran out quickly.
I won't go into the horrible details of how bad it is when you stop taking pain meds.
I will say, however, that 3 days after surgery, I wasn't in pain anymore. It was incredible. I actually broke down, and cried. 14 months of daily pain, and now just a touch of uncomfortable from the operation.
Over the time I was in pain, I has developed a "tic". My face and neck would twitch, especially when I got frustrated, or upset...pretty much anytime my blood pressure went up, and if you know me, that happens a lot.
After being in pain for so long, you tend to ignore anything that doesn't hurt. It really didn't matter to me, as long as I wasn't in pain.
Over time, I started gearing back up, and went and applied for my MHIC again. I was going to build my remodeling company once and for all.
At this point, I wasn't in pain anymore, so NOTHING was going to stand in my way. I took every side job I could think of, and went to work for a friend who had a Pressure Washing company, staining decks.
I had already started losing feeling in my hand at this point, but due the fact I was staining decks, I assumed it was carpel tunnel syndrome. I had it before, and it wasn't going to stop me know. I was wrong.
The feeling loss in my hand, over the course of a couple of months, turned into grip loss. It was intermittent at this point, heat and stress aggravated it. So, a slammed schedule in the heat of the summer wasn't a good combo.
As months went by, my hand got worse. I taped fingers together to make them grip better, and learned how to paint and stain left handed.
After a couple more months, I started losing feeling in my right foot. Just tingling, numbness, and intermittent pain. I had massive short term memory loss as well.
When I went to a neurologist, he ran some blood, all came back normal, and I was told I had ADHD. Yup, my memory loss was caused by Attention Deficit issues.
As to my foot, because my husband has dealt with disc issues in his spine for years, I assumed sciatica, and went and saw a pain specialist. I was given a few rounds of cortico-steroids in my lower back and hip. These seemed to work great for my lower back pain, but did nothing for the numbness.
Fast forward- I continued to see this pain specialist, and when I didn't improve, an MRI of my brain was ordered.
This was my first round of actually being scared. My MRI came back "abnormal". My pain specialist, asked me to go see a young neurologist by my home. MS was now on the table, and I was really scared.
When I first met this doctor, I wasn't in that bad of shape by my standards. I have somehow worked with my hands in a purely physical job my whole life. Injuries were second nature to me. My daughters middle name is "Grace" for a reason. (one of the qualities I have never possessed)
Tests were run. And by tests, I mean EVERY test a Neurologist can run. Blood, tissue, skin, more MRI's. Good times.
Finally, my skin and nerve biopsy came back. It seemed that all of my nerve fibers were "demylenated" (the sheath around the nerve fiber was missing, or degenerating)
This finally explained my feeling loss. But, as the months passed, my condition got worse.
Not only was I still dealing with the tic, and grip loss, I had started to limp.
I could no longer feel my foot touch the ground. I had to listen for it, or watch, to make sure it would land properly. I broke a couple of toes now and then, and couldn't feel it.
Then, came the night that I realized I was late. And by late, I mean pregnant. I took a few store bought pregnancy tests, and when they came back positive, I took more.
So, needless to say, although exited, another road bump was thrown in for my poor doctor to work around.
So, an LP (spinal tap) was ordered. -This was a horrible scenario as well. It should have been a simple procedure, but I was rendered paralyzed with a spinal headache. I had to receive a blood patch to close the leak in my spine, which helped considerably.
As my pregnancy progressed, so did my symptoms. My entire right leg lost all sensation, and I no longer had any reflexes upon neurological exam. My vision would blur, sporadically, and as of the day I finish writing this, my entire right side has lost sensory feeling. My face, back and abdomen as well.
I have been receiving IVIG after my spinal fluid helped with the diagnosis of CIDP. I have a random varient of the disease, that attacked one side of my body. My IVIG has been combined with IV and oral steriods, because my brain tends to swell every time I have a treatment.
So, I tried a walker, and fell on my face. I have a cane, but use it primarily to stand, move about my apartment, and get into the shower.
So, a wheelchair it is. I rely on it heavily, but am still defiant enough to not want to,while I still have a tiny bit of motor skill left. I can still go about 10 feet without it.
I know that this is still the beginning of my journey. My pregnancy has most likely exacerbated my condition, and I will hopefully be able to get it into remission after I deliver.
The baby (we just recently found out it was a GIRL) is fine, and has tolerated my treatments well. I may have to deliver early, due to the steroids, and will most likely have to have a C-section due to the feeling loss.
I have so many postitive things in my life, that for some reason, even though this has been hell, I continue to march. I refuse to let my daughter see me feel sorry for myself, and this has made me a stronger person.
I am blessed with wonderful friends, and family, and will pull through this with their help.
I will write more after a while. Thanks for reading...
