Wednesday, August 20, 2014

Earaches, Appointments, and Good News!

My left ear started bothering me last Tuesday so I finally went to the doctor on Friday. I do not have an ear infection, but my ear canal is red and irritated. We are not sure what this is from but it is not the first time it has happened. I saw my new primary care provider who I absolutely love! I called his office at about 2:15 asking for an appointment for my ear and they got me in at 4:00!!!! He prescribed some ear drops that are like topical aspirin. They help to relieve pain and also soothe the irritation. They have been helping significantly and I only have to use them as needed, which is nice that they don't have to be done on a schedule. Hopefully the earache will go away soon, but last time this happened (about 2 years ago) it lasted for months and then spontaneously went away.

Last week I had an appointment with a company that supplies wheelchairs. I am going to get a manual wheelchair that I can use for long distances. It will not be something I will use everyday because you can become dependent on them and your muscles will atrophy, but on long outings it will be so nice to have! It should help me to be able to do more longer outings without needing days to recover from them. It could take anywhere from a couple of weeks to a couple of months depending on how much my insurance company drags their feet, so hopefully that will come sooner rather than later!

Yesterday I went to the audiologist to get ear plugs made for noise induced headaches. These ear plugs are custom fitted to my ears so they are far more comfortable than store bought ear plugs. They come with a little filter that decreases the sound level (decibels) around you without distorting the sound. The audiologist and I decided that we would use a 15 dB filter which will bring the sound level down enough that I can hopefully avoid those noise induced headaches, but will not interfere with my ability to actually hear and understand what is going on. The only issue I had with this appointment is that my ear canal is so irritated right now that it was very painful to get the molds done. They squirt some foam into your ear canal and then you have to let it harden for two minutes. I made it through though and should be able to pick up my ear plugs in about 10 days to 2 weeks.

I had asked my rheumatologist to write a letter for me asking the geneticist that I am on the wait list for to see me sooner than next summer, which is when we were looking at. Thankfully the geneticist's office called earlier this week and said they will get me on September 4th!!!! I am so excited for this visit and hope to learn a lot about my health and my genetics. Please keep my family and I in your prayers as this is also the appointment during which we will discuss the risks of future children inheriting my conditions. This geneticist is world renowned in EDS and I am very blessed that he is only about an hour away from where I live. This will be a long, informative appointment that will hopefully provide many answers for us!

My right wrist, the one I had surgery on last year, is bothering me again. It went from shooting pains if I moved it the wrong way to now hurting every time I move it. I have my splint on it and am taking an anti-inflammatory medication twice a day. I will do this for a couple of weeks and see how it feels. Hopefully at that point I can start doing some of the exercises for the occupational therapist and it will start feeling better. If not I will make an appointment with my orthopedic surgeon and probably need to get a cortisone (steroid) shot in the joint to reduce the inflammation and then go back to occupational therapy. Please pray that my wrist heals on its own and we are able to get it feeling better quickly!

We are still working on getting the new gastrointestinal medication that I was prescribed. Like I said in my last post it is not FDA approved so it can not be dispensed at a regular pharmacy (Walgreens, CVS, Jewel, etc.) like all of my other medication. We might have found a way to get it covered by my insurance, but we are still working on that. Please pray we are able to figure out how to get this medication in a safe, cost effective way and that it helps my worsening GI symptoms!


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