Friday, September 16, 2016

Summer Update

It has been a long, difficult summer. I apologize for not updating my blog. A few months ago we lost my husband's sister; she'd been battling cancer for a long time. I know she will be missed by many. Tim's continuing to work long, stressful hours during the transition to new ownership at his workplace. And, while it really is a first world problem, we've had to replace our pool pump and salt water generator. It looks like we'll top off the summer with a $14,000 new roof! Oh, I can't forget,  I've been helping my cousin in and out of psychiatric care facilities for the past several months. She came into town, in pretty bad shape, with her two dogs in tow. I found some out of town family members to temporarily foster the dogs until she's back on her feet. The whole experience in dealing with mental health care has been eye-opening and heartbreaking. I've had to pull back from the situation because it was affecting my health too much.

We took a much-needed vacation to Santa Rosa Beach, Florida earlier in the month. We rented a
Condo with three other couples, and we had a blast! The guys are my husband's childhood buddies. We've gotten together once or twice a year with them and their wives, but this was the first time we'd traveled with them, and it gave us women a chance to get to know each other more. We have plans to get together for a bonfire at one of their homes later this Fall. And, we are planning on renting a cabin in the Smokies sometime soon. It feels so good to be part of a group, and I'm looking forward to getting to know them even more.

As we usually end up doing, we added a doctor's visit to the end of our vacation. I saw Dr. Kendall, my mitochondrial disease geneticist, in Atlanta. I almost canceled my appointment because most of my testing has been negative, but they convinced me to keep it by saying they had other patients who were in the same boat as I was. I am so glad I went; every appointment with her has been a great experience, and this one was no different.


We talked a lot about my autonomic issues. She suggested I find an autonomic specialist near me; I'm doubtful I'll be able to find anyone, but I guess I'll try. I'm at the point of just going to someone in Atlanta that she could recommend. Someone who would be likely to respect her opinion. I could probably find someone closer, but I know how much weight a referral she could make would hold. She suggested I try taking Mestinon again as it is used for dysautonomia and Myasthenia Gravis. MG has been a possible diagnosis for me for a while, but since I have one autoimmune disease, it makes me more at risk for others. Also, research is now showing a possible autoimmune component to dysautonomia. So, there's that.

As far as testing goes, she suggested a few things. She thinks a single fiber EMG would be a good idea as it can help diagnose MG. Also, she thinks there may be some benefit to getting an upright MRI as I have some symptoms of Chiari Malformation (that is also more common in EDS). We talked about gastroparesis and what I can do to help. I may end up having a delayed gastric emptying study at some point. In the meantime, she gave me some tips on handling it, small frequent meals, low fiber diet, etc.  She ordered an organic urine test along with amino acid tests. I also got six tubes of blood taken to check for other abnormalities that are common with mito and metabolic diseases. The last time they were checked, I had some abnormal results, but they weren't in a specific disease pattern.

My exam was basically unchanged from my last one. She still saw signs of blood pooling and mottled skin. The weakness in my pelvic muscles has not improved and is probably worse. She suggested I consider physical therapy. I may go a few times just to get an evaluation and the exercises to do at home, but I don't think I'm up for a long term commitment to weeks of PT.

Dr. Kendall brought up medical marijuana; we talked about how she uses it in her practice and how it has helped some of her patients. She mentioned that the changes in Opioid prescription laws might make it harder for patients to get pain relief and that marijuana would be an option if that happens. My state is one that doesn't allow it even for medicinal purposes, so unless that changes, I won't be able to try it. I'm not sure if I would, but it would be nice to know that I could if I needed it and it was available to me.

So, now I sit and wait for the results. I also need to start looking for an autonomic disease specialist and a physical therapist. I need to get a Rheumatologist, too, as that was recommended by my eye doctor, but I still haven't got a referral. Sometimes, it's a busy job being sick.



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