A lot has happened in the past two months or so. I have graduated college and started my masters. Crazy? Just a little bit. I study, go to class, do homework, and make it through. Somehow. My POTS has been under control and pretty manageable for about 6months now, but other symptoms have just been bothering me more and more lately.
I had surgery in May on my nose. My cartilage was falling(due to EDS), I had a 100% bone spur blocking my nasal cavity, my turbinates (I still am unsure what these are completely) were very enlarged, and I had an icky deviated septum (again, because of EDS). The recovery absolutely sucked for the first week until the tubes were taken out. After any kind of surgery, I get AWFUL jaw/face pain. We finally decided that I have trigeminal (sp?) neuralgia. The only way to get relief is to go to the ER and get IV meds. I will never, ever, have surgery around my face ever again. *Just thinking about it gives me shivers...*
Also, I had a tryptase blood test done to check for MCAD/Systemic Mastocytosis. My levels came back elevated! The next step to officially confirm is to have a bone marrow test done. I chose to wait 4 months to be retested and then decide. I just can't come to term of getting a bone marrow test done. I heard it's pretty painful... has anyone experienced one before? I have had such a strong gut feeling of MCAD for almost 2 years now. Constant running to the bathroom after eating certain foods, but I have no idea of the trigger. Rashes. Chemical sensitivity. Allergic/Sensitive to medicines. Heat rashes.Headaches.headaches.headaches.constantly! GI problems since I was a kiddo.Elevated liver enzymes.Eosinophilia.& many more... I have all these random things, but STILL, I feel yet to have a definitive answer. The list goes on.
Anyways, enough about my health. I will graduate with my masters in a year. ONE year from today to be exactly. Added plus? They are paying for my schooling :) I know I can make it through, I know I can do it, but these added symptoms do suck. I am pretty good at putting on a fake smile and making it through. Aren't we all? I will never give up, I will always persevere through illness, no matter what it may be. We are all strong ladies and I am proud of every one of our accomplishments, no matter how little it may be!
I know that many of you have been having a difficult time lately, but keep your head high. You are so strong! When you think that things can't get any better, there is no where else to look but up :)
Cheyanne: It's good to know you finally got a diagnosis! EDS is NO fun, but it's good to know someone else who can relate :) Take care!!!
Michelle: CONGRATULATIONS GRADUATE!!!
I see we have no posters! Nice to "meet" you Hayden and I think Emily has been posting every now and then? Gosh, I am so lacking!
P.S...Logan, I can't wear those shoes either! I just gave up and gave them to friend -- haha
I am just going to answer the questions I can find...I apologize if I miss any! ...here goes nothing
Does anyone avoid eye contact when they have muscle jerks?
-Honestly, my only muscle jerks are RLS (restless leg syndrome) so I wouldn't know. It sounds awful, I hope they get better!
How much independence do you have?
-I am very independent. The only time I will even ask for assistance from anymore (mind you I am extremely stubborn) is to drive me somewhere if I am too off balance or overstimulated. The only other things I rely on are my lovely stools and occasional show chair ;)
What medicines are you on?
-I am on mestinon 12.5mg (3x daily), atenolol 25mg (1x night), protonix 40mg (2x daily), b12 injections, and others not related to POTS. I have to take VERY low doses as I am very sensitive to medicine.
Do you get chest pain/how often?
-I hate the chest pain. I get it quite frequently and at various times! However, after my nasal surgery, I can breathe!! So that has helped tremendously.
What part of your head do you get headaches/migraines the most?
-headaches are typically around my temples, front of head, and the top of head. When I get migraines (usually 1x-2x a month) the pain radiates all around. With both headaches and migraines I am extremely sensitive to light, noise, smells, anything.
What are your plans for summer?
-GRADUATE SCHOOL. and sleeping :) Plus getting my classroom ready.
Do you have a geographic tongue?
-I have never heard of that. I don't believe so. I get sores, but I don't think I have geographic tongue. Interesting, though!
Have you had a tilt-test?
-Yes, I have. A year after I was first diagnosed through a "poor-man's" tilt-test.
Do you have eye problems?
-I have floaters, whatever that means :/
Have you ever gone to or considered therapy?
-I have not. I have considered it at certain times and think it wouldn't hurt, but personally, I hate the stigma that goes with it from other doctors.
What was your favorite high school memory?
-Oh my. I was always sick and in the hospital in high-school and known as "the sick girl". It sucked. Honestly, I wouldn't have graduated if I was at a public school, I would have missed way too many days. I was able to make things up at the hospital and at home.
When you have a day to yourself, what do you watch a marathon in?
-I love television. It's quite pathetic actually. My favorites include: Say Yes to the Dress (the original version), Gilmore Girls, and The Real Housewives :)
What is your favorite song?
-I feel like a complete nerd admitting this, but I love Girlfriend right now. *please note, I do not like justin bieber, nor do I like any of his other songs*
Happy first day of July!! I hope you all are able to spend some quality time with family/friends on the fourth, even if it's just for a tid bit!
xoxo
Erin
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