Myositis

[sandsarita]

Does anyone here have any practical experience with having horses and riding/showing competitively while dealing with a myositis. I am still in the diagnostic phase, we know it is a myositis now, and go for an EMG next week to determine where to do a muscle biopsy the following week.

Right now I have days where I am great. I can unload and stack 100 bales of hay, I can ride 4 horses, I can ride hunt seat without stirrups for 20 minutes and then followup with 2 point work.

Then I have days where I can barely do anything. I almost fall coming down the stairs in my house, if I attempt to drop my stirrups I about fall off doing a sit trot, I cant move a bag of grain, I fall getting out of trailer if I am not careful. I show AQHA, and was at the World show a couple of weeks ago and before my hunter under saddle finals they had to literally throw me on my horse because even with my tall braiding stool I couldn’t climb on.

Even before this diagnosis I had hired a girl to feed and do the heavy cleaning and work during the week and when I am gone, and hired a house keeper. I am looking at getting someone to do my yard work next year. I am lucky II can afford this, but may have issues with my job as it is very physically demanding work and I am already being warned to cut back and take out major disability insurance.

Does anyone have any experience dealing with this while trying to maintain a farm and showing at a high level? I have one horse for sale even before the diagnosis, luckily he is the hardest one for me to ride. I think I am going to take my old packer off the market as she is miss reliable, takes little leg and I can show her or just play around bareback with a halter on her.

Lets just say I am frustrated and nervous. I know this can get really bad, but am hopeful that with treatment we can hold this off. But needless to say I don’t want to change my llifestyle but am having to.

[spotted_draft_x_fill]

If you’re on facebook there’s a group called myositis support & understanding. There’s tons of people in that group who have different types of myositis and some people have horses. There are some that are wheelchair bound and there’s some that run marathons. The treatments are pretty much the same for any autoimmune disease but a lot of people swear by the infusions (which you might not get right away). Unfortunately for me my drs never did a biopsy but my symptoms lean more towards dermamyositis which is the lesser of evils for this disease. I haven’t ridden in awhile and there’s some days where it feels like it’s too much to even groom them. You just have to listen to your body, take breaks when you need to, and try not to overdo it especially when you’re flaring.

[sandsarita]

Thank you - I just requested to join the group. For me its the frustration of not being able to do things I usually can do easily. I am trying to admit I need help, which is hard. Will see how this goes. I go back to doctor in a week and hopefully will be starting treatment. She wanted to do high dose steroids, but her first question is can I avoid falling off. (after she looked at my arms with bilateral scars from fractures, although that was a while ago). My answer was I try to, but can’t always. Of course I came off today and fell once tripping over my own dang feet and then had my broodmare stand square on my foot. Dang animals. Usually don’t have this type of weekend. lol