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!
Wednesday, August 20, 2014
Monday, August 11, 2014
Updates!
Wow it has been way too long since I have posted an update!!! Lots of things have happened medically since I last updated.
After I was released from the hospital with those excruciating headaches my mom came out to my house for a couple of days to help me since I needed to lay flat on my back as much as possible to help the spinal leak heal. This was tremendously helpful and then I went back to my parents house for a few more days to get some more much needed rest. After this I just took it easy for another couple of weeks and am thankfully feeling much better! The added bonus is that I found a medication that I can take as needed for my headaches, so that is tremendously helpful as everything I had tried previously was not working. I need to hear back from my neurosurgeon about the MRI still, so I actually just sent another email as writing this blog post jogged my memory.
I had posted about my gastroenterology appointment at the beginning of July. I got the blood work done and all of those results were good which means that my liver is functioning well and that I do not have any signs of malnutrition as of now. I then got the ultrasound of my gallbladder done. This is just like an ultrasound they would do if a woman is pregnant, but of your gallbladder which is located in the middle of your abdomen on the right side. This test is supposed to be painless, but sadly because of my connective tissue disorder (EDS) that makes me hypermobile my ribs kept dislocating from the pressure of the ultrasound probe. That was not pleasant, but we made it through and this test also came back normal showing no signs of gallbladder issues or gall stones. I then went for an upper endoscopy. This is a tube that is inserted into your mouth and then down your esophagus into your stomach and upper intestines. This test really was painless! They used my port, so I didn't need an IV even. They put you under twilight sedation, which is a lot easier on your body than general anesthesia and you can maintain your own breathing and heart rate. They just gave me some oxygen and the procedure took maybe 10 minutes total. They took biopsies to check for infections and celiacs disease. All of these came back normal as well.
I then had a follow up appointment with my GI doctor last week (August 6th). We started an acid reflux medication a while back and that has been mildly helping, but there are still issues going on. Sadly he doesn't know much about me and my condition and we are running out of options. He has diagnosed me with a condition called gastroparesis. This means that my stomach does not empty fast enough which causes my pain, low appetite, nausea, and bloating. I will start on a medication to try to speed up my gastric emptying time, but the issue is that this medication is not FDA approved so we need to find a safe, cost effective way of obtaining this medication. The other concern with this medication is that it can cause heart rate issues, blood pressure issues, and heart arrhythmias. I am prone to all of these because of my autonomic nervous system dysfunction, but I emailed my autonomic neurologist and he said that it is safe to try this medication as long as I get frequent EKGs to make sure there are no changes in my heart functioning. I am looking into finding a new GI doctor that understands gastroparesis better, but this is proving to be challenging!
I was able to pick up my second AFO (ankle-foot orthotic) which has been WONDERFUL!!!! I love them so much. They do not let me move my ankle at all which makes me steadier on my feet, prevents ankle injuries, and helps keep my body in alignment. My hips have felt so much better since wearing them because if your ankle is in the right position then all the joints above it are in better alignment as well. The laces that came with the AFOs were way too long so I ordered shorter ones that are purple, so I was excited about that :) Finding shoes that fit was tricky, but we finally found a pair of gym shoes and pair of sandals that fit well and are cute (and both purple of course!). I normally wear an 8.5-9 women's, but these shoes are between a 10 and 11 women's, so I had to go up quite a few sizes! I will get pictures of them later to show you guys, but they take forever to put on, so I don't want to do that right now :P
I had an appointment with a new endocrinologist in my area to discuss my thyroid issues. I have mild hypothyroidism that we had started medicating for a few months ago. Since starting this medication I had noticed changes in my menstrual cycle and was not really sure if the medication was actually helping. We decided to test my thyroid levels, stop the medication, and then retest in 8 weeks. This will tell us how much the medication was actually helping and help us to determine if I need to continue this medication or just keep an eye on things for now. I will go back the first week of September to retest my levels and then the following week (9/11) for a follow up with the endocrinologist. As of now I am not sure if this medication was helping or not. I struggled coming off of the medication with some low BP issues and fatigue, but I am not 100% sure if this was due to discontinuing the medication or not.
I was able to go on vacation to Florida with a few of my friends and had a wonderful time! We went to a Harry Potter convention and to the Wizarding World of Harry Potter. It was such a fantastic time and my body held up really well! I borrowed a wheelchair from a family friend so that I did not tire myself out and also did a liter of IV saline everyday to make sure that I stayed hydrated in the heat. I did really well and was able to make it through the convention and have a wonderful time! I hope I will be able to go back next year! I also was able to go horseback riding with one of my very best friends! I haven't been in so long and it felt WONDERFUL!!!! Horseback riding is my favorite thing to do and I love it so much. We had a wonderful time and I did really well. Of course my hips hurt the next day, but my back, neck, and head did really well which tells me that the past two surgeries I have had helped tremendously.
Since this is already such a long update I will leave it at that! I am sure there is more and as I get back into the swing of updating things I am sure I will remember other things I need to add. Love you all and thank you for the continued support and prayers!
After I was released from the hospital with those excruciating headaches my mom came out to my house for a couple of days to help me since I needed to lay flat on my back as much as possible to help the spinal leak heal. This was tremendously helpful and then I went back to my parents house for a few more days to get some more much needed rest. After this I just took it easy for another couple of weeks and am thankfully feeling much better! The added bonus is that I found a medication that I can take as needed for my headaches, so that is tremendously helpful as everything I had tried previously was not working. I need to hear back from my neurosurgeon about the MRI still, so I actually just sent another email as writing this blog post jogged my memory.
I had posted about my gastroenterology appointment at the beginning of July. I got the blood work done and all of those results were good which means that my liver is functioning well and that I do not have any signs of malnutrition as of now. I then got the ultrasound of my gallbladder done. This is just like an ultrasound they would do if a woman is pregnant, but of your gallbladder which is located in the middle of your abdomen on the right side. This test is supposed to be painless, but sadly because of my connective tissue disorder (EDS) that makes me hypermobile my ribs kept dislocating from the pressure of the ultrasound probe. That was not pleasant, but we made it through and this test also came back normal showing no signs of gallbladder issues or gall stones. I then went for an upper endoscopy. This is a tube that is inserted into your mouth and then down your esophagus into your stomach and upper intestines. This test really was painless! They used my port, so I didn't need an IV even. They put you under twilight sedation, which is a lot easier on your body than general anesthesia and you can maintain your own breathing and heart rate. They just gave me some oxygen and the procedure took maybe 10 minutes total. They took biopsies to check for infections and celiacs disease. All of these came back normal as well.
I then had a follow up appointment with my GI doctor last week (August 6th). We started an acid reflux medication a while back and that has been mildly helping, but there are still issues going on. Sadly he doesn't know much about me and my condition and we are running out of options. He has diagnosed me with a condition called gastroparesis. This means that my stomach does not empty fast enough which causes my pain, low appetite, nausea, and bloating. I will start on a medication to try to speed up my gastric emptying time, but the issue is that this medication is not FDA approved so we need to find a safe, cost effective way of obtaining this medication. The other concern with this medication is that it can cause heart rate issues, blood pressure issues, and heart arrhythmias. I am prone to all of these because of my autonomic nervous system dysfunction, but I emailed my autonomic neurologist and he said that it is safe to try this medication as long as I get frequent EKGs to make sure there are no changes in my heart functioning. I am looking into finding a new GI doctor that understands gastroparesis better, but this is proving to be challenging!
I was able to pick up my second AFO (ankle-foot orthotic) which has been WONDERFUL!!!! I love them so much. They do not let me move my ankle at all which makes me steadier on my feet, prevents ankle injuries, and helps keep my body in alignment. My hips have felt so much better since wearing them because if your ankle is in the right position then all the joints above it are in better alignment as well. The laces that came with the AFOs were way too long so I ordered shorter ones that are purple, so I was excited about that :) Finding shoes that fit was tricky, but we finally found a pair of gym shoes and pair of sandals that fit well and are cute (and both purple of course!). I normally wear an 8.5-9 women's, but these shoes are between a 10 and 11 women's, so I had to go up quite a few sizes! I will get pictures of them later to show you guys, but they take forever to put on, so I don't want to do that right now :P
I had an appointment with a new endocrinologist in my area to discuss my thyroid issues. I have mild hypothyroidism that we had started medicating for a few months ago. Since starting this medication I had noticed changes in my menstrual cycle and was not really sure if the medication was actually helping. We decided to test my thyroid levels, stop the medication, and then retest in 8 weeks. This will tell us how much the medication was actually helping and help us to determine if I need to continue this medication or just keep an eye on things for now. I will go back the first week of September to retest my levels and then the following week (9/11) for a follow up with the endocrinologist. As of now I am not sure if this medication was helping or not. I struggled coming off of the medication with some low BP issues and fatigue, but I am not 100% sure if this was due to discontinuing the medication or not.
I was able to go on vacation to Florida with a few of my friends and had a wonderful time! We went to a Harry Potter convention and to the Wizarding World of Harry Potter. It was such a fantastic time and my body held up really well! I borrowed a wheelchair from a family friend so that I did not tire myself out and also did a liter of IV saline everyday to make sure that I stayed hydrated in the heat. I did really well and was able to make it through the convention and have a wonderful time! I hope I will be able to go back next year! I also was able to go horseback riding with one of my very best friends! I haven't been in so long and it felt WONDERFUL!!!! Horseback riding is my favorite thing to do and I love it so much. We had a wonderful time and I did really well. Of course my hips hurt the next day, but my back, neck, and head did really well which tells me that the past two surgeries I have had helped tremendously.
Since this is already such a long update I will leave it at that! I am sure there is more and as I get back into the swing of updating things I am sure I will remember other things I need to add. Love you all and thank you for the continued support and prayers!
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