So, how do you start a brand new blog? I've had other blogs in the past but life got in the way and I didn't keep them up. I decided to start fresh. So first, I guess you need to know something about me and my very crazy, very full life. These first few entries then are going to be a little background about all of us and how we got where we are now.
I think I have always been a caregiver even if not by profession. The first time I remember acting in a role as caregiver I was around 7 or 8 years old. My paternal grandmother was in the beginning stages of dementia and I spent a lot of time at their house. Granddaddy called and asked if they could bring me over because Grandmaw was having a bad spell. We went. I remember asking why. It was very unusual for us to go to their house in the evenings, I was there after school. Dad just told me Grandmaw was having a bad day and it would probably make her feel better to see me and have me visit with her. I did just that. I remember being a bit confused but not at all scared. By the time I was in the 4th grade and Grandmaw was asking me my teacher's name everyday after school, I understood she had some kind of old person thing wrong with her without anyone telling me. And everyday after school, I told her my teacher's name without once being a smart-ass kid. I have no idea why. I guess because I loved her.
Throughout my childhood, I watched and was there while my dad's family cared for his mother, my mother helped care for her grandparents and then parents and when I could, I helped. When my mother started having seizures in my teen years, she needed someone to help her. When I started driving, I helped drive back and forth to hospitals and appointments with my mother and grandparents. I was always with them. My maternal grandmother had rheumatoid arthritis. At 19, my grandfather taught me what a CNA now does when she broke both feet. I could use a sheet and turn my grandmother in the bed, change the bed with her in it, take her vitals and I put her on and took off a bedpan more times than I would have liked. And bathing, well that was easy. Granny taught me you could stay clean without getting in a tub. You just washed down as far as possible, then up as far as possible and then you washed possible. Learning to shave a man's face when my grandfather had heart problems was not as easy.
I considered going into the medical field. This was the 80's, however. The medical field was something women did as nurses. That just wasn't me. If I did it, it had to be ground-breaking. I needed it to be as a first responder, an EMT (we didn't have paramedics then) or firefighter or somewhere I could prove something. Women didn't do that in my area during that time. What happened? I'm not exactly sure except that again it was the 80's and other things were exciting, too. I decided I was really good at technology and that was also groundbreaking. So, computers, here I came. Not PC's, like now, the big ones we had back then. S36's, S38's and the new AS400 that used RPG and RPGII. Programming was fun, too. For a little while.
Then in the middle of my 20's, 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. And once again, my primary function became as a caregiver. 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. Later in his life we learned he also had Celiac Disease and can tolerate no gluten. Nursing once again became a primary function of caregiving. And 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.
Not long after, life was completely turned upside down again. 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. 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 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. That 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. You should me mop with rags under my feet instead of bending over a with a mop.
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. 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 complete 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. The one I'm wearing now has a purple ribbon drawn on it for IBD awareness.
All of this surely sounds like enough, doesn't it? Unfortunately, my abdominal pain didn't really stop completely after surgery so I have recently been to see my GYN again and discovered that I have ovarian cysts, fluid in my pelvis and probable endometriosis. It looks like more surgery might be in my near future. I'm hoping to just be rid of all those parts, too.
During these last four years, while being a patient, I have also been the primary caregiver for my brother-in-law after a traumatic brain injury. Sound interesting? It is. Life is certainly not dull. Therapies, appointments, tests, medications, paperwork and more. How do I keep my sanity? By trying to find the humor, enjoying everything that I can do and chatting with new friends who really understand what it is like to be a caregiver and to live with chronic illness. I hope some of my stories after getting to know us will entertain and maybe educate you a little.