Sara is a... penguin?

Hi all! I had a very fun weekend two weekends ago! After a couple bad weeks, which were not good at all health wise, I decided I needed to go have a fun weekend! I went horse back riding with one of my best friends, Jessie. I have not ridden for at least a year and it felt FANTASTIC to be back on a horse. I have ridden horses since I was 8 and it is the one sport that I love! I went for a nice long ride on a wonderful little horse named Tucker. I have ridden him a number of times previously and he is incredibly sweet! He did great, I didn't fall off (which would have been VERY bad), and I had a blast. I even jumped him a tiny little bit which was great! I did really well that day and didn't hurt too badly. It hurt my lower back a little bit along with my neck and my ankle, but nothing too badly. I got dehydrated because I rode for a couple hours without fluids, which was a really poor decision! I did alright though and drank tons of my electrolyte enhanced water after the fact.

The next day my hips felt AWFUL! I could barely walk and my sprained ankle really hurt, but it was SO worth it. I waddled around like a penguin for two days, which was fun for the people around me to watch :) My neck muscles were also killing me! This is not a good sign, but also not unexpected. I am so glad that I got to go riding!

It is the small victories in life that count and this was a very exciting victory for me and I hope to be able to go riding again before winter sets in!!!

Fun Weekend... NOT!!!!

This weekend started out bad and just got worse, but thankfully it got better on Sunday!

I started on Thursday complaining that my heart rate was jumping up way too much upon standing up. The "normal range" is an increase of less than 30 beats per minute going from a laying position to an upright position. This is the goal we try to keep my heart rate in, with medications of course. I normally do pretty well with that goal and only increase between 10-20 beats which is really good for me and even considered normal! On no medications this increase can be up to a 60+ beat increase just from standing up. This weekend it was going up at least 35 and up to 51 beats simply from changing position and this was with my medication to lower/regulate my heart rate.

As the weekend progressed my blood pressure also plummeted! I have no idea why and I was extraordinarily close to going into the ER. I felt truly awful and no matter what I do I couldn't get the numbers to come up. Generally I push the fluids and salt and I can get the BP to come back up. Now keep in mind a lot of people have low pressure with no issues, but for me I get extremely symptomatic. Also, I take 2 medications and 2 supplements specifically to raise my BP, so when I have low pressure that is on top of all these efforts to raise it! My numbers were down to numbers like 91/53 or 85/60. Both of which are much too low for me! I felt extremely fatigued, nauseated, shaky, and generally icky! I don't know how to describe it, but it truly is an awful feeling!

Anyways, I have no idea why it happened or what I did to make it better, but it is gone now! I just took my blood pressure sitting down and it was 107/75 with a heart rate of 66 :) these are perfect numbers for me and I am feeling much better now!

I will keep track of my blood pressure numbers for a while and email my neurologist to see what his thoughts are. He has offered me another medication to add to my cocktail if I need it to raise my BP, but I am not sure I want to add in another medication! He has also offered me a stimulant to take to help to decrease the brain fog. I am thinking I need to take this one because school is becoming increasingly more difficult to concentrate because I can't seem to get through the mental fog to focus.

I will let you all know when I hear back from him. Still waiting and praying to hear back from The Chiari Institute! They review cases on Monday's so hopefully I will hear back tomorrow, but I am not hopeful. I would guess it would be another couple of weeks before I hear back from them, so please keep praying for me and my appointment!

The Chiari Institute

This week has been a really rough one! Yesterday in particular I really struggled to even function. I did not make it to class, and thankfully did not have work yesterday. I worked on a project with my partner for a couple hours and even with prescription pain medication and muscle relaxers I barely made it through! My headaches and neck pain are getting so much worse :( I am also having a return of many neurological symptoms such as aspirating (food or drink going down the air way instead of the esophagus), pin and needles in my feet, and ringing in my ears.

With all of these concerns and issues I am finally ready to admit that I need help again! I am struggling to take care of myself and do simple things like remember to eat, keep up with housework, get homework done, and meet the needs of my pets. I decided that the best route for me right now is to see a true expert. Unfortunately there are very few experts in Chiari, and even fewer that specialize in both Chiari and EDS along with the dysautonomia. There are really only 2 true experts for these conditions when they are as complicated as I have them and only 1 takes my insurance.

I debated whether to share this with all of you yet or not, but I can't wait! I sent in my paper work to a center called The Chairi Institute in Long Island, New York! They called me back and had me send in my MRI scans from after my surgery in December. This does NOT mean that I will get an appointment at this center. The physicians will review my scans and forms that I filled out and then decide collaboratively if they think that they can help me. They cannot take every patient so it is not guaranteed that they will take my case on, but I so hope they will!!!!! It could take about 2 or 3 weeks if not more fore them to get back to me. They only review new cases on Monday's so that is why it takes so long. I am hoping to hear back before the end of October...

I will update more later, but that is the big news of the week!

General Update

Well as promised, here is a general update!

As many of you know I started school a few weeks back. This has been extremely exhausting for me as I am going to school 5 days a week for the first time since high school! This may not sound like a lot to many of you, but I need the 3 day weekend to catch up on my sleep. I don't go out on Friday's or anything like that I really need that extra day to regenerate!  I am also taking much more difficult classes than I have in the past. This has proven to be a lot of work for me and caused much stress! I am an overachiever and have gotten all A's with only 1 B (which I am still bitter about!) in all of my college career. I am taking both neuroscience and anatomy and physiology of the speech and hearing mechanisms. These are extremely involved classes with tons of memorizing! I need to convince myself that for the sake of my health that I need to not stress so much and realize a B is not the end of the world!

Health wise I have not been doing overly fantastically. My headaches and neck pain have been getting worse. These are probably due to the Chiari and related conditions that go with that. The surgery in December helped with my Chiari symptoms, but they are definitely still here! My symptoms tend to cycle, so I am just in a bad cycle right now. Sometimes these cycles can last weeks, sometimes months; only time will tell how long this one will last. My energy levels have been low and I have spent a lot of time in bed reading books and watching movies/ youtube videos. I am hoping this is not a long cycle though!

My wrist is still doing very well and I have next to no pain! I am hardly wearing the brace at all anymore because it doesn't hurt and I just don't remember to put it on! I have a prescription for occupational therapy, but I am scared to go because I don't want them to hurt it more! They will not understand EDS and may cause more harm than good because of their ignorance. This is what happened with my knee a few years back. I haven't decided what I want to do with that! I do still have a gigantic bruise, 2.5 weeks out, on my left forearm where they tried to start on IV and my vein blew. I am prone to blowing veins and bruise very easily due to the EDS. It looks like someone is beating me up, but thankfully it is starting to fade now!

I was riding the recumbent bike daily and doing really well with it! I made it through the first week and got up to 10 minutes and was feeling like it kept getting easier and easier. My heart rate was staying between 140-160 which was a little higher than I wanted it to get, but thankfully it did not set off my symptoms! The sad news is I sprained my ankle taking off my shoes yesterday so now I am not able to ride the bike :( I am taking 600 mg of Ibuprofen three times a day to keep down the inflammation and have it wrapped in an ace bandage for compression for the next few days. On top of the wrap I have my stabilizing brace from last time I sprained my ankle in May. This brace provides support and has bars on either side so I cannot roll my ankle at all. Walking still hurts and I have to be careful so that I don't trip. I will probably have to wear the brace for at least the next 2-3 weeks. I am disappointed that this will make me have to start over with the exercising routine, but what can you do?

As far as medications go there has not been too much change. I had tried to go up on one of medications, Florinef, that helps me retain salt and water, which in turn rises blood pressure, but that was not successful. One of the side effects of that medication is headaches, well we know I am already prone to headaches, so we have to be very careful with that med. I am back down to taking it only once a day and seem to be tolerating that fairly well. I am scared to add in more medications because of the side effects! I am very sensitive to the side effects of medications, which is a result of the dysautonomia, so they can really knock me down if we are not careful about introducing medications very slowly! I did add in a sodium supplement. I need to increase my sodium intake in order for the florinef to work better and also to help raise my blood pressure. I don't eat enough though and was finding it difficult to eat enough salt. I add what are called thermo tabs into my pill routine. They have 180 mg of salt each, which isn't that much but at least it is more than I was getting before! I take at least 4 a day and might go to more if I tolerate these well. 

The nausea and lack of appetite were gone for a short while, but have now come back with a vengeance! This is just part of the cycles of my symptoms, but it seems as if the nausea and lack of appetite are here to stay :(

I will post those pictures from my wrist surgery later on. I have to scan them into the computer and then figure out how to include them here. Sadly though, my computer died so it needs to go to the Apple hospital to get fixed :'(

I'm sure I missed some stuff, but here is the general update that is long overdue!

No more stiches!!!

I got my stiches taken out yesterday :) It hurts a little bit to get them taken out, but it is not too bad at all! He put on two little steri-strips, which are like pieces of tape, to keep the incisions closed. I can take those off in another 2-3 days. I also get to go back to the smaller brace instead of the giant immobilizer I have been wearing since the surgery! This is so nice because I have full use of my hands and fingers! I also do not have to wear any brace when I am at home. Whenever I go out or will be lifting something then I have to wear the brace to prevent reinjury, but it is still nice because I can have a naked arm for at least part of the time!

He prescribed occupational therapy to get my range of motion back in my wrist. I have next to no range of motion bending it forward and very little range of motion bending side-to-side and backwards. I need to find an occupational therapist and get that scheduled soon here! I then need to go back and see my orthopedic surgeon in six weeks to get the all clear!

I am just elated to have my hand back and have NO pain in wrist! It is amazing how small of a tear caused such large issues. I have photos from during the surgery so I will post those as well at some point.

I will post an update on other things shortly!

Wrist Update and Exercise

Hi all! I hope you had a great week! Sorry I didn't update sooner, I had a crazy week at school!

My wrist is doing wonderfully! I never took any prescription pain meds for it AT ALL!!!!! I took a few Tylenol or ibuprofen for a few days, but after that it has been just fine! I have very little pain in it anymore and am just ready to get my arm back! I have to continue wearing the immobilizer until Thursday when I go to get the stiches out. I want my arm back now!!!!! It is just difficult because I am right handed and so it interferes with writing and things like brushing my hair.

 

This is my wrist from a couple of days ago. I only have the two stitches and as you can see there is little to now swelling at all!!!! The lines on my skin are just from the pressure from the brace.

My Neurologist wanted me to start exercising even though I have exercise intolerance. We decided to buy a recumbent exercise bike since this is the recommended exercise for me because it is seated and easiest on your joints. For now I am supposed to start with 5 minutes a day and work up from there. I have to start very slowly for fear of 1) injuring myself due to the hyperextenisve joints and 2) setting off a symptom flare up of my dyautonomia if I do too much too quickly.  So far I have done well with this and am enjoying it greatly!

Surgery and unexpected ER trip

Surgery went great yesterday! It was a short surgery and I have very little pain! He said that he cleaned up a lot of the torn cartilage that was catching and causing the pain. I have to leave the dressing on until Sunday and then the new giant brace will stay on until I go back and see him a week from Thursday. Right now I have only taken regular Tylenol twice since the surgery.

The biggest struggle we had was that I did not receive enough fluids during the surgery and my autonomic dysfunction really flared up! I ended up going back to the emergency room for more fluids. I felt like I was going to faint and had a low heart rate. After about 5 hours in the ER and 1.5 liters of saline solution I feel FANTASTIC!!!! Right now I think we are doing ok, just for the next surgery I now know that I need to make sure to ask for more fluids!