Excuse the absence. I feel there is no real excuse, as everyone is "busy" but what a year it has been. Interviewing for my future has been my top priority :) Now the waiting game still continues.
Health wise, I've been pretty good. Joints and what not are always a problem plus GI issues. That is nothing new and a "normal" for me! Non-POTS related...I sliced my hand yesterday while putting the dishes in the dishwasher. AH it's very deep, too! No fun. It's on my right hand AND right by my knuckle. Not the best place : / I was debating getting stitches or not, but I'm sick of doctors and will not go unless it's absolutely necessary.
This Thursday is my 3-4month appointment with my autonomic neurologist. I have been so bad at remembering to log all my BP's and HR's! Does anyone else tend to forget a lot? When I have remembered, my pressure standing has been so high... around 139/109 ..boo! Maybe I need to ween down on my mestinon? We'll see!
SO MUCH I have missed. I really do apologize. Welcome Christine and Emily! It's awesome to have you here :) Hannah - congrats on starting bible school, you will be wonderful in all your future religious endeavors! Cheyanne - I am SO sorry that you did not have a good experience with your geneticist. What an uneducated doctor to be helping you...of course EDS patients have pain! Wow. I hope things are better, dear! Rhianne - I hope school is going well!!! Logan - raw diet = success! Also, I think you said you are registering or working on your education, I think! Congrats girl and keep pushing on! Miranda - I believe you just recently moved! I hope it wasn't too stressful and everything is good with school and what no! Take care, girl! :) Michelle K - Hope school, work, and your busy schedule is working okay for you! I love your determination!
Now for the LOADS of questions that I have missed...
How many of you have joint pain on a daily basis? I do! My arms always hurt. They constantly hyper-extend and there's nothing I can do. Just naturally fall that way and look really funny (they gross people out!) My hips tend to hurt a lot and my wrists, left shoulder, and ankles are also my primary complaints.
Are you double jointed? VERY! 9/9 on the Beighton Scale, plus a lot of weird other things...it really runs in my family!
What settles your heart rate best? Laying down, rest, deep breathing, atenolol...
Do you take vitamins, if you do what do you take? Currently, I take probiotics, vitamin C, and am still on b12 shots.
How do you deal with a relative who does not understand what it is like to have a chronic illness?
I have given up on a couple and honestly, when I have "good days" it's like they can't believe that I can be okay one day or even hour and crappy the next. They look at is as "well, it could be worse..." or "at least you don't have cancer". I just get annoyed and don't really talk about my illness with them. My biggest pet peeve, however, is when they don't ever ask questions or bother to ask how I am. Frustrating!
How do you manage to go to school all day? I can barely manage being at school for 2 hours.
When I took college classes, I got decent breaks. It was nice! Teaching, it can be very difficult at times and when I get home, I pass out! Honestly though, I have learned what things in my life are important and to not give others my energy. I try to rest and preserve as much as I can! There really is no answer, and at times I have to call in...
If your ten year old self met you now, would they be proud?
I think I would be in awe about all I have accomplished and overcame. When I was ten, I was very sick with my GI problems as well, so as far as illnesses, I was always a sick kiddo. Nothings new, just my determination!
Do you have any bad habits?
Who doesn't?! Ha-ha - Too many to even think about right now, though!
Any suggestions for confronting friends who do annoying things that bother your dysautonomia?
I will just take myself out of the situation usually. I have found that when other people have to modify THEIR life to accommodate yours, they get tired of it. It is much easier to just remove yourself from the stimuli or problem. If it is a small group (one or two people) I will just flat out tell them what is going on and ask if they could simply stop or dismiss the behavior/action. Mostly, I just avoid my triggers...bright lights, crowds, loud packed rooms, late nights, etc...
What is your preferred exercise? This is my problem. I NEED to exercise more. Right now I walk, but unfortunately do not do that much. I want to really work on core strength training like Pilates again.
Brain fog. How bad is it for you, and what exactly do you label brain fog?
Sadly, this is one of my worst symptoms. I think the biggest difficulty is forgetfulness and recalling words. I can be thinking of a specific topic, but to find the specific word... that can be so difficult. I can picture the word in my head, but for the life of me cannot figure out the name. It's actually very embarrassing, too. I alway say "I just have an awful memory" or"Brain Fart!"
Holistic Medicine Thoughts?
I used to use it. I think it's good, but a little bit of everything is always the key, I think. It's just too darn expensive.
What subjects are compulsory for you?
I am done with college, but waiting to get into graduate school this summer. Right now I am student teaching :)
Any advice for trying to form a good sleeping habit, without 'killing' yourself in the process?
No TV in the bedroom. Go to bed the SAME time every night and regardless of the day, get up at the same exact time for 2 weeks.
Do you all have any of the sweating issues and if so what kind of deodorant do you use?
Sometimes, depending on the day, I can sweat a lot. I love BAN deodorant.
Do you have a normal sleeping schedule?
For the most part, I do now!
How do you cope with bad memory? What tricks do you do to help yourself memorize things?
I have an awful memory. I cannot remember so many things, it's really sad. If anyone knows are suggestions for this I would gladly take them!
Do you have a scale you rate your days on?
I get so incredibly tired of doctors saying "One a scale of 1-10, where would you rank your pain" ... I mean really! Ugh.
What is your favorite "I'm sick but need out of the house" activity?
I love organizing. Anything and everything :)
Do you find yourself tempted to take on way too much even though you know realistically you shouldn’t be doing so much?
Of most definitely. Guilty party of one, right here!
What is the highest your heart rate has ever gotten that you have been aware of?
My highest, I believe is 189
Do your legs feel itchy when you have blood pooling?
YES! I hate it! I have peripheral neuropathy, but they get so itchy!!!!!!
Do you suffer from abdominal pain and if so, is it something that's been investigated, or is it just a POTS thing?
I have had lymphacytic colitis for a long time now, but + all the ther POTSy symptoms added to it! Blah. GI symptoms make it hard to live typical life.
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