In the middle of my 20's, like many young women, I got married and along came a baby. I was completely and totally hooked! Everything about my life ceased to exist outside of that child. I opened a family daycare, meaning I had between 6 and 10 children daily in my home daily, certified by the state and subject to random inspections of property, meals, etc. My sweet little son was hit with chronic illness, chronic asthma. Not acute asthma attacks but chronic asthma where his lungs stayed in a constant state of inflammation until it would get so bad that he developed pneumonia or bronchitis. We later learned that he also has Celiac Disease and can not tolerate any wheat products.
Then son number two entered our world, kicking and screaming and never sleeping but laughing most of the time. It didn't take long to learn he didn't fit the mold, either. It did take several years to understand that the baby we knew needed routine like fish need water had Asperger's, an austism spectrum disorder. The baby is 15 years old and physically the healthiest person in the house. He is also so smart and has overcome so much of the social awkwardness that goes along with Asperger's. I am thankfully every day for our choices and decisions.
Not long after his birth life really got interesting. I woke up one morning and couldn't move my knee because it was so stiff. I decided I must have strained it, popped some Advil, limped and got on with the day. A couple days later, I couldn't even get out of bed because the other knee was completely frozen. I had to have help. How could I care for children? I had already been having terrible bouts of vertigo (dizziness) and ringing in one ear that was thought to be some weird Meniere's Disease. Now, I couldn't move my knees? What was happening to me? It took about two years for me to get a real diagnosis. It the meantime I was terrified by all the things thrown out that "it" might be but was not. Those two years I thought I must be crazy because they couldn't decide what was wrong with me. One day joints would be swollen and not work, the next things were normal.
Finally, I was told I have Psoriatic Arthritis and not Meniere's Disease but AIED, auto-immune inner-ear disorder. PsA is similar to rheumatoid arthritis but it goes along with the skin condition psoriasis and does not always affect both sides of the body equally. It can also be more devastating to your spine. Over the years I have had discs bulging and rupture and now have degenerative discs in all three areas of my back, cervical (neck), thorasic (mid back) and lumbar (lower) spine. I have what is called spondylitis, or psoriatic spondylitis, which simply means inflammation in the spine. All of this means I am not a candidate for the pain management options like steroid or epidural injections or even some of the new surgeries. I make adjustments. It also means I was not able to continue with my plans of opening a day care or watching children. Thankfully, I have other skills and can work from my computer.
In 2010, as if ears, arthritis and DDD were not enough, I started having diarrhea a LOT. I ignored it. I saw enough doctors. I already had a GP, rheumatologist, ENT and neurologist. I did not need to add more. Ignoring it didn't work very well so, I went on the gluten-free diet with my oldest son. That helped out and I felt more normal. Then I had a terrible flare up of arthritis and nerves in my back and took a few rounds of steroids. On Memorial weekend of 2011, the diarrhea hit me and never let up. It was worse than any stomach virus I have ever had in my life. I was diagnosed with Ulcerative Colitis, probably. Another auto-immune disease than can go along with the type of arthritis that I have. No matter what type of medications I tried, nothing helped. I just could not eat. In total, I lost about 80 pounds over those two years. I was malnourished. Many days I didn't even have enough strength to pour myself something to drink. On March 6th of 2012, I had a colectomy. I was too sick at the time for anything but getting that nasty colon out of me. I got my stoma, Moxie, that day. Moxie saved my life. Getting used to an ileostomy is not easy. But it beats dying any day of the week! Moxie wears a bag, of course. I consider it an accessory.
2013 brought trying more medications, more trips to specialists, another psoriatic arthritis flare up and eventually another surgery for pelvic pain. Having the colectomy or having auto-immune disease, who can be sure which, caused havoc on my "girlie" organs and I was again in constant pain. Abdominal surgery and treatment when you already have an ileostomy is more high risk but in September, 2013 I had a total hysterectomy.
It feels wrong, somehow, to write about myself and my own health. I'm always the caregiver, even throughout my own health challenges. I go to the doctor with other family members. My brother-in-law even lived with us. Until Colitis, I handled everything. That through me for a loop and put me on the sidelines. I'm still trying to recover and get back in the game again. That's okay, I can yell and give directions from the 50 yard line. Every good game has lot's of coach's, right?
Surgery Day! March 6, 2012. First Day with Moxie and a new life.
December, 2006 Family Picture. I thought I was too fat then. Now I only worry about health not weight.