Normally I don't publicize my health issues, but since I'm making Reilly public, I figured the background of why a service dog will be useful would be a good thing to have.
I have three diagnosed disorders/diseases.
One is Raynaud's Disease. This is an autoimmune disease of the circulatory system. Here's a link to what the Mayo clinic has to say about it: http://www.mayoclinic.com/health/raynauds-disease/DS00433
For me, it means that each year my temperature tolerance moves upwards. I used to have Raynaud attacks when the temps dropped to the fifties. Over the years, that's moved upwards so that I can have them in the low seventies! The lower the temp, and therefore the bigger the temp drop, the more severe the attack, and the more painful. Raynauds is one of the reasons I sold my sheep flock. Breaking ice in the winter is difficult enough with the muscle issues, but add the extra time in the cold, and it became excruciating.
The second is Sjogren's Syndrome. This is another fun thing. Here's a link to the Sjogren's Syndrome Foundation for more on it: http://www.sjogrens.org/home/about-sjogrens-syndrome
I'm reasonably lucky on this one as it affects my eyes, mouth/nose and joints, but as far as we know, no internal organs. However, I have had an attack of pleurisy this year which made me paranoid. (We all know I'm a bit paranoid these days.) My eyes currently have the tear ducts plugged to retain as much moisture as possible. I'm no longer able to use eye drops or ointments, as the water content in them is immediately sucked up by my eyes, leaving the dissolved solutes to crystallize...and turn into sharp little shards that cut up my eyes. Not fun. However, I have found a sterile water spray to help, with no solutes. My mouth has spent several years being cardboard. The end result of this is an inability to eat anything remotely dry. Remotely. Things I never thought of as dry before are suddenly horribly dry. Currently I'm on predisone though, and have some saliva production. I've eaten peanut butter and jelly sandwiches for the first time in two years! Yay! The pred has also given me back some function of my taste buds (which can only handle being so dry before they shut down.) although no sense of smell has returned, or rather, I get an occasional whiff of something, but it's rare. Joint pain is another ballgame. Knees are the worst, although the pain is also waaaay down since I've been on the prednisone.
For the record, I've been on immunosuppresants before, and had problems each time. Earlier attempts with pred gave me severe depression. Methotrexate increased the joint pain. Another one helped me develop a case of ophthalmic shingles, which were not fun. But an allergic reaction that required a high-dose/short duration run of pred gave me hope that I could try it again. We have, at a high dose this time, weaning down to find a maintenance dose. And this time I have good effects. Some negative ones too, such as an increased appetite...I've gained 15 pounds!... but this time I got the euphoria instead of the depression. Just call me Predisone Pollyanna. She was really bad when we started, but I've locked her up now, and just let her peek out.
Now we hit the big issue...Inclusion Body Myositis. This one is the reason for Reilly. Here's the short version for you: http://www.myositis.org/about_myositis/inclusion-body_myositis.cfm
And the long version: http://www.ibmmyositis.com/ This one is a compilation of a lot of information, put together by a man who has IBM.
What IBM means to me is...oh, gee, where to start? It means not being able to do things that I used to take for granted. Like holding a baby. Or picking up a cat. Or a rabbit. Or cutting up the food on my plate. Or eating a piece of cheesecake. Stepping up the three steps into my house. Getting out of a chair, or off the toilet. Visiting friends. Trying on clothing in a shop. Small things, all.
My hands, forearms, thighs, lower legs and swallowing muscles are affected, and I've had vocal changes as well. I used to sing. Not good enough to sing on the radio, but good enough to sing with the radio. Now I croak. Swallowing is difficult, (dysphagia) because the initial swallow should trigger the involuntary muscles in your esophagus to start continuous contractions (peristalsis) to move the food bolus downward. Mine does sometimes, and doesn't sometimes, and there's no way to predict it. I have better results if the food has enough texture to help trigger peristalsis, therefore soft foods are most likely to stick...and are most likely to block breathing or get inhaled. Inhalation pneumonia is a large risk for people with dysphagia, no matter the reason for it. Tipping my head back to drink is also difficult, so straws are becoming friends now. It's a good thing I've never cared much for hot drinks.
My hands can't hold things well. I drop things frequently. I now have handles on my drinking glasses. I'm trying to figure out more user-friendly silverware. They have some things on the market, but they are designed to be adult sized children's ware, and that reduces their effectiveness. I don't need a blunt-tipped knife! I need an angled, sharp pointed knife! I also need a fork with a short, cross-wise, thick but not heavy handle I can use to cut food up. As far as I can see, nobody makes that so I'll have to devise my own. My handwriting and typing are deteriorating rapidly, but typing will last a long while yet. then I'll have to go to Dragon Speak, or another voice program. Picking things up is difficult. I can lift more with my upper arms/shoulders than I can with my hands, so I use shoulder bags a lot. Unfortunately, they throw off my balance.
My lower legs, feet and ankle weakness really translates into flat shoes only, and a tendency to trip over my own feet. Foot drop. I wore an AFO brace (ankle/foot orthopedic) for several years, but more recent knee problems caused the pressure pattern on that to become untenable. It hurt! I'm currently in the process of being fitted for a new KAFO, to incorporate my knee. My knees, particularly my left, simply quit and buckle. That's a sure way to fall down, and is what caused my fall of July 18, mentioned in the blog. The joints just don't have the muscular support they need. And then there's the thighs..the quadriceps muscles. The ones that lift your leg up, or lift you up. You use them when you go up stairs, when you get up from a chair or the floor. While I can still walk fairly well, and most people would wonder why I have a cane at all, if I fall, I can not get up, nor can I help someone help me up. I'm like a stranded fish. I have to be picked up like a child and set on my feet. Or get to a high enough position where I can get up. I have a toilet lift on my toilet, plus bars, and that's getting harder. Next step will be an electronic lift, that actually raises and lowers me. Of course, that means I'll be stuck at home. It's not portable. I can't get out of a lot of chairs either. A higher chair is not a problem; we have a counter height dining table and chairs now. At a restaurant an inch makes a huge difference. So do arms on the chair. I'm learning to say, "No booth," as mostly those are impossible. People always offer to "help" me up, but most ways they try are painful. Getting grabbed and pulled on produces bruises. And people pull like they would helping a healthy person, expecting them to compensate and adjust balance, which I can't do. People who "help" me often do so at my risk.
Ultimately, I'll end up on a feeding tube and bed/wheelchair bound, unable to do anything except look and talk. And some people even lose their voice, although that's not common. Not a fun prospect, when you're only 52 years old, and have long-lived family. I could spend decades like that. My worst nightmare come true.
So where does Reilly fit in? He will help keep me active, and out of a wheelchair for longer, that's how. The longer I can stay out of a wheelchair, the better I'll be mentally and emotionally as well as physically. Once I give in and start using a scooter or chair because it's easier, my muscles will atrophy at an ever-increasing rate, and soon I'll have no choice but to use wheels. Reilly will help me stay productive longer, as I'll be able to continue working as long as I can take care of my personal needs. Instead of throwing my balance off carrying things to class, Reilly can balance me and carry things too. Instead of getting trapped on a toilet seat, I can have a harness on Reilly with a pull handle on the back, so he can help me get up. (I never thought I'd look forward to taking a dog to the bathroom with me!) If I do fall down somewhere, he can get help. Or bring me the phone so I can call for help. He can bring me other things too, like my cane. At first I'll just have him. Then it'll be him on one side and a cane on the other. And finally, a wheelchair with Reilly to help pull it, since my hands can't push the wheels. And help me get out of it. I'll have to phase up to an electric wheelchair, but those, with a lift seat in them which I'll need, rival the cost of a luxury car. and even after that, Reilly will be there to pick up things I've dropped, to get things I need, to help me undress by pulling sleeves off my arms, to open cabinets and doors using ropes...all sorts of stuff. And to give me a reason to stick around through this nightmare. Because being needed is really the only reason to stay. And when a dog loves you, you're needed.
