Thursday, May 31, 2012

Sun Poisoning!!

Long time, no post! My internet is still refusing to be cooperative, so right now it's 2:30 am and I'm in the family room which is the only place I can get internet long enough to post.

In reference to the title, my dad and I launched our new boat, Tallulah, on Friday. We were just expecting to have it put in the water then go home; but we ended up having problems with the engine to we stayed longer and went out sailing for a bit. Seeing as I wasn't expecting on being out I only had sun block on my face (which I wear every day). By the time we came back, which was only a few hours, I was severely burnt. The following days the pain from the burn made it pretty impossible to move, let alone sleep. The blisters on my shoulders and back just started busting yesterday, so I finally started peeling.

Backtracking a bit.. I went to my schools baccalaureate service, then later participated in graduation. At my school we have a candle lighting ceremony during graduation where a senior will light a torch and all the juniors will light our candles from said torch; it's to symbolize the succession of juniors to seniors. I wasn't expecting to cry so much at graduation, but it was really crazy to see all of these people that I've had such a close relationship with graduating. It still doesn't even feel real that I'm a senior.

Staying on the topic of school, I'm going into my local community college so I can talk with an adviser to see what classes I should be taking in the upcoming year. I'm planning on homeschooling almost everything, then if all goes well, possibly taking enough college classes to get an Associates Degree as well as my high school diploma.

On Tuesday I met with one of my teachers (the one whose class I was failing) and had a tutoring session with her. She gave me some tests to take home to complete, so I can have a grade that's high enough for me to get my credit for the class. Luckily my homeschool review isn't until the end of the month so I'll have time to finish up all of that.

I'll skip to the questions now, so I don't ramble anymore.

You know how we like to have a day to ourselves every now and again and do a 'marathon' of what we love? What do you do? I like to read, but my vision (and attention span) isn’t that great so that doesn’t last for long. If that fails I’ll usually watch a marathon of some TV show on Netflix.

Have you had a Tilt Table Test? If you have had more than one, have you ever had one on medication? I have only had one. And that was the day when I was actually diagnosed with POTS, so I wasn’t on any meds for it (and still am not).

Do any of you have eye problems? YES!! I have the same problems as you do (Cheyanne) but I don’t have perfect vision. The thing is that I’m nearsighted, so I shouldn’t have problems with reading up close.

What is one high school memory you'll never forget? Probably all of my choir trips, especially this one.

For those of you with anxiety problems, have you noticed that it gets worse at a certain of the day of year? Not really. My OCD used to be so bad that I could barely function (I mean like repetitive movements, hand washing up to 30+ times a day and compulsive thoughts; at one point it was so bad that I was refusing to eat.) I've had a pretty bad relapse where almost all my old symptoms are slowly coming back. Hopefully by my psychiatrist appointment on the 4th it doesn’t accelerate too much and I can be put on new/more meds.

My question: Have you ever gone to or considered therapy/counseling? I used to go for almost 3 years then I improved and stopped going; but that was before POTS got worse. Now I’m really considering going back to at least weekly sessions (I used to go 3x a week).

Have a lovely week,

Wednesday, May 30, 2012

Cheyanne here!

I don't have much to say at all because nothing has really changed. I am going to see Dr. Tinkle for the whole Ehlers Danlos VS Marfan Syndrome thing. My appointment is on the 11th. I will make a video after my appointment explaining the answers I get! I figured I would just post to answer the questions. :)

Michelle's' Question: What is one high school memory that you will never forget?
I just started high school and I only go for one period. I hate it. I despise it. I honestly have nothing good to say about any of it. lol. Middle school was great though...until I had to be home schooled in the 8th grade.

I feel like I am still stuck in the 7th grade. It is like my life just stopped as soon as I got as sick as I am now. I even write 2010 on my papers. If I have to write the class period for the one class I do go to, then I often write 6th period because that was my last period of the day back in middle school.

My Question: For those of you with anxiety problems, have you noticed that it gets worse at a certain of the day or year?
I have horrible anxiety/OCD tenancies. The OCD is very manageable now, it was not when I was younger. Every year about this time it all gets worse than it usually is. Strange!

God bless! xx

Update from Rhianne

Guys I know it isn't even my day (it's Rhianne not Cheyanne) but I figured I would do a quick post now why I have the energy (even though Hannah who I just skyped with may doubt this). Anyway, I have been soooooooo Potsy recently and it sucks! I have fainted every week this term at school and more faints at home. Tuesday, I fainted up the stairs at school and an ambulance was called. I was running a mild fever 37.5 my normal body temp is 35 and my heart rate was spaz. When I got to the ER lying down my pulse was jumping from around 55 to 100. When I stood it went from 60-130 I think, then it just jumped around the place. They were transfer me but my prof said just to send me home. :) I Am probably getting admitted to the children's hospital sometime soon. Thinking of all you girls, Rhianne.

SPOONS, I almost forgot about those!

Hey guys its meeee, sorry for the late post again, I was tired and not feeling well last night so I just went to bed. I think I also skipped a week or 2 ago, so me and Christine are all confuzled about whose week it really is and we decided I would post this week. : S – yeah
 I would just answer some questions today!

Hayden/Emily?? hey its good to hear from you! I have heard of those eye movement things, I can't remember what they are called though : ( really sorry about that!

Michelle R, I'm glad it sounded like you had fun at the photo shoot! - What is a high school memory you will never forget. I remember once at another track meet I went behind the bleachers where everyone was storing their stuff, and I walked past the bleachers and I sprawled out in the grass in the big field behind them. I just listened to my ipod, and looked up at the sky, and the sun was beginning to set and everything had this amazing golden glow to it, and it was so beautiful and kind of enchanting too. I mean it was it was a strange school and a strange field and it was a place I had never been before.

Do any of you have eye problems? Yes, and I sometimes get the thing where I can't focus properly, but then it goes away later... and its totally Dysautonomia, alot of us get it! Don't worry about it.

Have you ever had a tilt table test? Yes I have, I have had 2, and I was not on medication for either.

Hannah – When you have a day to yourself, what do you have a marathon in? UMMM wow I don't really have any specifics actually. I occasionally get tv shows from the library and watch like a whole season in one day, but I don't really have a favorite.

Miranda, I LOVE – Beyond The Sea! And you looked lovely in your dress! : ) Miss you, and we still have to skype soon!

What is your favorite song? - It honestly changes all time!

- Logan.

Saturday, May 26, 2012

Hey, all

I'm really sorry! I keep forgetting, or something comes up, etc etc and I can't post! It's been really crazy. I've had a LOT of issues with school, who, despite telling me I could basically not go to school for all of 4th quarter and still graduate, decided to pull me aside three days before finals, when I was in the middle of an episode, and say I might not graduate. -_- And then I've been having issues with my mother, and yeah. *waves hand*

Michelle: Congrats! I'm sorry about your legs. =/ I think one high school memory I'll never forget is....Huh. Y'know, I dunno. I'm trying to think of a good one, but I'm not sure...Two come to mind: For a senior prank one year, someone let out crickets in every bathroom and another set a chicken loose in the school. *rolls eyes* Another that comes to mind is...Well, I hope a high school memory I'll never forget, in a good way, will be the All Night School Party coming up. I'm hoping I can last, and I won't have too many side-effects from it. =)

Cheyanne: I'm sorry you aren't feeling well. =( Good luck with the doctor! I hope things work out well. *hugs gently* I do have eye problems. Sometimes my vision will fade in and out, or things will get blurry, even if I'm wearing my glasses. They also do something weird, like, they'll jerk back and forth really fast at random moments. I haven't been able to figure out what that is.

Michelle K: Heya! I'm sorry. =( I hope you're feeling a little more recovered from the Tilt Table Test today. I've had two TTT. The first I passed out before given anything to help it along. The second, I did not pass out, but my pulse dropped to 54 and then jumped to 186. I was not on medication for either.

Sending everyone virtual hugs and spoons!

Hayden (Jsyk, I changed my name, in case you're confused. Used to be Emily. ^.^)

Friday, May 25, 2012

Michelle R in the house!

Hey everyone!
It's been a while, but I'm back tonight. I've been keeping myself busy lately with taking pictures for everyone!
I'm also in my final days of high school...I know, finally! I'm oober excited but I'm also kinda nervous. Which brings us to my main issue right now. My legs. >.<
They have been giving me major trouble lately and I have no idea why. They just get so weak super fast and it's super annoying. OH! And my mother is convinced this sort of vitamin type thing will help with my fibromyalgia pain, but so far nothing. It's a God-awful little pill and it's super gross.

Moving on...I had a photo shoot today and it went very well, but of course I'm super tired. My friend's momma even gave me like 20 dollars extra which was super awesome of her.
Here's a shot I like.

They were super cute to shoot <3

My question to you all is what is one High school memory you'll never forget?
Hope y'all have great weekends and a mucho amount of spoons<333\
Michelle R

Wednesday, May 23, 2012

Ready to see Dr. Tinkle!

I don't have much to say. I'm still not feeling well. Tomorrow I have my first PT evaluation. I met a lady in Orlando who also has EDS. We met up last weekend and did a fund raiser and all of the proceeds when to EDNF. She wants to come to my evaluation to make sure that the therapist doesn't overextend my joints and hurt me.

In a couple weeks I fly out to see Dr. Tinkle. I guess we will establish what connective tissue disorder I for sure have, and if it is EDS, then will can figure out what type!

My POTS/dysautonomia symptoms wax and wane for no reason at all. I am currently in a flare. :(

My Question: Do any of you have eye problems? When I go to read, at times my vision gets extremely blurry and when I try to focus on something else other than the text, I cannot see! I've been to the eye doctor and my vision is perfect. I'm trying to figure out if this focusing problem is autonomic related or not.

Michelle K's Question: Have you had a tilt table test, if you have had more than one, have you ever had one on medication?
I have had 2 and have not been on medication for either of them.

Hannah's Question: You know how we like to have a free day to ourselves every now and again and do a "marathon" of what we love? What do you do?
I usually just sit on the computer all day and write and or blog. :)

I hope you all are having a good week! God bless.

- Cheyanne

Friday, May 18, 2012

Sending Smiles To Y'all :)

Hey guys!

I would like to make a video, but I have too bad of a headache... Maybe next time :)
Anywho, you guys know I switched to 80mg of Propranolol and unfortunately, after five days I started feeling ill from it (on the night of the fifth day). I was getting really low blood pressure (bottom numbers in the 40's) and my pulse wasn't really compensating. I also got really sick with my stomach that night too, I am not sure if it was from the medicine or a virus, but it didn't feel good either way!

Now I am on just the 5mg of Midodrine, four times a day and my normal meds. I am still on 10mg of Lexapro and I have hopes of being able to leave it behind- but I'm beginning to wonder if I should go back to 20mg until we at least figure this other medicine business out. I am getting some of my body pain and GI issues back as well as some other things. My cardiologist actually called me to discuss my Midodrine with me while I was writing this and I shared with him that some of my symptoms were returning since going down on the Lexapro and he wants me to take 15mg and I am suppose to remain on my current dosage of  Midodrine- but will need another halter since I've been experiencing more irregular heart beats. So we shall see how that goes!

I am also needing to get my wisdom teeth removed, I have been determined to live with them- but now I am experiencing pain from them so I understand why they need to come out :). It's a bit complicated though because of the precautions my cardiologist would like us to take- which I am happy he's making sure I'm taken care of. He wants me to have IV saline infusion 3 hours before the procedure, during, and 6 hours after- however, I'm not sure he knew that I was going to be awake. So, after the Doctors talk to each other  I guess I will know for sure if I am still doing that haha. I'm nervous but definitely need them out so I'm just going to try and take it as it comes!

I hope everyone is okay, there haven't been many posts :(.

Erin: What is your favorite phone/ iPad app or what is something "fun" you would recommend to do when you are home and feeling icky?   I have been thinking about this question since I saw your post :) Some iPhone/iPad/iPod apps I like are Scrabble, Saving Yello (free- at least when I got it lol), puzzle games are fun too! I also like crochet- and as odd as it sounds, I like to study haha. I like to pop out a book(s) and use other materials to learn about something that interests me. Lately it's been different things in the Bible. And I've recently discovered how fun it can be to read a novel for fun (and not for school- Haha).

Also, I am sorry to hear things aren't the most stress-free for you lately. I know times are trying right now and I send you lots of love. I'm sorry for your recent loss :( <3. Please know I am here if you need absolutely anything! And I will certainly send someone your way if I cross paths with someone who is in a similar boat as you healthwise. Keep hanging in there <3.

Logan: I don't believe you had a question, but I hope your stomach issues get better <3 and I am happy to hear that your sensitivity issues have been improving lately! <3.

Cheyanne: What is your favorite song? I have a few, haha Trip Lee has his new CD so I have been enjoying it. He has it up on Rapzilla's Youtube channel for listening if anyone is interested :).

Also, I'm sorry to hear that your POTS symptoms are returning- that is no good at all. Keep hanging in there. I hope you can soon take your brace back off too :) <3.

Miranda: I don't believe you had a question either, but it was so good to see a post from you! I'm sorry to hear that you are having relapses with anxiety and depression. I know that has to be so hard to deal with but you are such a trooper! I understand a level of it (I believe I used to have OCD- and to a degree now, but I have been working really hard at it and the associated anxieties, or even anxieties unrelated, and I praise Yahweh/God that I am improving so much. So, there is hope!). Keep hanging in there and finding what works for you, I know the trial and error of it though can't be fun :(.

Enjoy the fact that school is almost out! 

My question for you guys is... You know how we like to have a day to ourselves every now and again and do a 'marathon' of what we love? What do you do? Like for me, I might watch some of my geeky survival shows, do a craft, etc. and  just enjoy being able to rest. How about you all? I used to love having free Fridays before I got really sick, I would spend the evening watching HGTV (Home and Gardening TV) and craft/paint/sculpt until I went to bed. Even if I was doing something fun, I would always feel sad if I missed a Friday to myself because I'd have to wait a whole 'nother week for another one- haha.. But now that I am sick, I find these "do my favorite things and relax" days a time to mentally and emotionally recoup from the stresses of chronic illness (and many may think these days are everyday since we're sick and at home all the time- haha- but not so, I mean when we specifically take a day or evening where we feel up to it, to do our favorite thing(s) ). I suppose before getting sick they were even some what of recouping for the next week kind of days.

Until Next Time... <3

Thursday, May 17, 2012

I Don't Know What To Title This

Hey guys!! Sorry i haven't been here but between internet troubles and a kind of anxiety/depression relapse I haven’t been updating but I’m back now! Headaches and super fatigue haven't helped either. This is a bit of a long post, and the same one on my blog, but since I haven't updated in a while I thought I should make it longer.

In contrast to the rest of my year the past few weeks have been eventful. I had my choir trip, an ER trip and my banquet. Plus stress from school, which only has like one more week.

Now to elaborate on said events…

The choir trip was absolutely crazy. Every day, and there was four,  was at least 18 hours long and no rests. We went to a museum, did competition, went to an amusement park, and went to two church services. The first church was a Messianic Jewish church that was absolutely amazing! They invited us to dinner, had communion and during the service we danced and sang (occasionally in Hebrew). I’m not used to going to such a liberal church, most of the ones that I go to are quite conservative and to be honest, boring. That being said, I’m trying to find a congregation near me that I can check out.

One night during the choir trip apparently I got bit by some type of bug. I woke up in the morning with bites all over my arm, hip, stomach, back and one on my ear. During the day the swelling, pain and itching got worse so after the church service (the first one) my teachers and I decided it would be best to go to the ER, since we didn’t know exactly what they were. The hospital I went to was wonderful; they were fast, courteous and actually listened when I told them about my dysautonomia. (The doctor I saw took notice of my emergency bracelet and asked what POTS was.) After looking at them he diagnosed them as infected spider or mosquito bites. I was put on prednisone and an antibiotic, both of which tasted absolutely disgusting.
In the morning.

After the church service.

And a few days later.
Banquet was kind of boring but the events leading up to it was pretty fun. But before I go on about it, I should probably explain what it is! Banquet is a junior/senior dinner type even that is pretty much meant to recognize the seniors and it’s my school’s version of prom.  My dress was really pretty and it amazed me because we bought it online so I was expecting it to be messed up or something. I also got my hair done the day of Banquet.

Anyway, back to the present.. I’ve recently been having trouble with one of my classes (that I really don’t care to elaborate on) that’s been making my recent depression/anxiety regression worse. I’m not sure even why it’s happening; I upped my dosage of Lamectil to 100mg so maybe that could be causing a bad side effect. Personally, I think that I need to switch to another antidepressant, since I’ve been on Luvox for about 2 years now. But the problem with that is that Luvox is meant for both OCD and depression, and if I go on another medication id probably have to go on two different ones for each thing.

Also this weekend is an air show at the Air Force base that my dad serves at so I’m thinking of going to that. I’m not sure though, since my fatigue has been incredibly bad to the point that I can only be up for 3 or 4 hours a whole day. Plus the two hour drive to there and the noise might make me really sick. 

I’m going to stop myself here before I ramble too much and go on to the questions.

What is your favorite song? I listen to a lot of music, but I'd have to say Beyond the Sea by Bobby Darin right now.

What is your favorite phone/ipad app or what is a something "fun" you would recommend to do when you are home and feeling icky? I don't have many apps for my ipod/iphone but if I'm home I usually just go outside or watch tv.

Are you on a beta blocker? Nope, I haven't been to my cardiologist since last year since he won't do anything. And it would be my luck that when we schedule an appointment with another one, Dr Grubb will call.

Have you ever had a doctor suggest anything interesting/out of the norm, such as coca cola to help control symptoms? Nope, but I have heard of coca cola syrup for upset stomachs.

Do any of you get carsick, and how do you handle it? Do any of you take Dramamine? I do get car sick but I usually just try to sleep or listen to music.

Do you have any study tips for when you have brain fog? Haha no. Yesterday I forgot all my books at home when I was supposed to be going up to class, so brain fog/general forgetfulness is my enemy right now.

What over the counter medication, or herbal/vitamin/mineral supplements do you guys find that help with headaches, and/or allergies? I usually just take ibuprofen.

Have a nice week! -Miranda 

Wednesday, May 16, 2012

I haven't been feeling well.

My POTS symptoms were doing so good and now they are back. A couple weeks ago I blacked out and fell as soon as I entered the bathroom. Then started having tremors and all of those lovely things (not).  I am blacking out nearly everyday at school. I keep taking double/triple breaths. Kind of like when you are sobbing and are really upset. That has been going on for a couple weeks.

I have been having to wear a neck brace because of whatever is going on there.
It looks like this:

Oh, and I do have some good news! Last Monday I went to take the PERT test, which is a college entrance exam. I passed!! :) Now I am just going to take classes at the college and I will get a high school credit and college credit at the same time. 

For the past God knows how many weeks I have been sick. And I am getting sick....again. Boo. Rhianne said they need to put me in a bubble. Hahahaha! Honestly, I do not know how much longer I can keep going like this. I cannot deal with viruses on top of EDS/POTS. I want a week where I do nothing but lounge around and rest. 

Erin's Question: What is your favorite phone/iPad app or what is something "fun" you would recommend to do when you are feeling icky?
My favorite apps are Words With Friends, Scramble With Friends, and that is about it. Not much of an app person. When I am feeling icky I usually just blog, listen to music, or watch random YouTube videos. 

Hannah's Question: Are any of you on a beta blocker?
I can't be on one because of my mast cell issues. I read it can harm you if you have those issues and I do. :\

My Question: What is your favorite song? 
I had no clue what to ask, but I didn't want to not ask a question. :)

I hope y'all are doing okay. 

God bless,

Tuesday, May 15, 2012

Rhianne's Monday Video

Sorry it just me whinging. Another thing that is not in here was that I had to drop out of the musical for school. Don't y'all love pots?

Sunday, May 6, 2012

The waiting game

I'm not sure if all you remember about the congenital heart problems they are trying to address lately, but main it has been a waiting game filled with tests and appointments...with no definitive answers yet. The only thing I know for sure is that I have a PLSVC (persistent left superior vena cava).

Unfortunately, this is rare and there is slim to none information on the internet regarding this congenital anomaly and its connection to other related defects :/ I also have had a bicuspid aortic valve since birth and they mentioned other issues, but refuses to give me specifics until they complete all the testing they want.  I had an hour long echocardiogram and a bubble study (they shoot aggitated saline "bubbled saline" into your left arm, as that is the side of the abnormal vein placement, and watch it drain into your heart so they can see where it goes) It took forever to find a vein, as I am always a difficult stick, but you could feel the movement of the bubbles all through your arm! 5x! It felt so weird :/

My new cardiologist seems nice and she oozes of knowledge. You know those people you can just look at and when you hear them utter a word, you know the are so intelligent. That would be her! Her husband is also a heart surgeon in Nebraska, so it makes me wonder... what in the heck do they talk about at home? Must be a unique dinner conversation to say the least.

 I would LOVE to talk with anyone who has congenital heart defects and how it affects you? They are calling me either tomorrow or Tuesday to decide which test they are doing this week. They said prepare for a cardiac MRI (which lasts 3 hours) Oh boy... I just can't take the waiting game anymore.

I really am wanting to have surgery and tentatively have it scheduled for the 18th of May. My nose is always congested and gives me daily headaches. I know many postsies who have had the procedure and they said it really wasn't bad! I would have my deviated septum replaced, a bone spur totally blocking my sinus cavity removed, and a reduction of something? ha, I don't remember? I quickly tried to mention that I would like the surgery and I have it tentatively scheduled until I get approval from her (and pulmonology and internist, AND a personal appointment with anesthesiology!) WHOA! I've never had to go through all of this before... but hey, at least they are being very prepared to make sure it is safe. When I mentioned it to her, she pretty much shot me down. Her direct words in a very harsh voice... "WHY?! FOR WHAT?" "Ooooh, I don't know, we'll have to see!"

:/ bummer. So if you know anyone who is going through something similiar, please send them my way... I'm kind of nervous...

Here are your questions for the week :)
Hannah: Are you on a beta blocker? How do you handle it?
I am on a beta blocker. I was on metaprolol for about a year but my breathing is very difficult, so they switched to atenolol. Supposedly, atenolol has the least effect on you lungs. (All beta blockers put pressure on your lungs! If breathing every becomes difficult, for anyone, take note!) I took 25mg half tab per day that was okay at first when my heart was really bad, but eventually became too much! My autonomic neurologist recommends me taking 20mg and always taking it at night. My fatigue is dreadful and I can fall asleep during the day, so that is why I believe he had me take it at night -- Currently, he allows me to monitor my meds as needed. I personally like this and am taking a bb once every other day or every two days, depending on the day :) Whooo. that was lengthy!

Cheyanne: Do any of you get carsick?
I hate being a passenger. I actually try to drive whenever I can or if I know I'm really feeling icky, I just won't go (unless I need to). I feel like when I am driving, I have more stability and control. I hate car rides, too! I tried dramamine, but it makes me drowsy and you have to take it prior to driving, so I always forget, and I really don't think it helps!

Michelle K: Has your doctor ever recommended anything out of the ordinary?
Ha. Honestly, most of my crazy, un-knowledgable doctors just told me to enroll in a dance class and do aerobics. I still laugh. Not specifically for POTS, but other specialists for other things have told me stay away from Gatorade, the HFCS is not good for the digestive tract... all the health food unnatural things... but no solid advice that I would recommend :/ Were you ever provided with any useful/helpful tips?!

Christine: I hate the temperature changes, too! Summer is the worst.

Silly question: What is your favorite phone/ipad app or what is a something "fun" you would recommend to do when you are home and feeling icky?

Praying for you all...

P.S. I'm an official college graduate as of yesterday :)

Friday, May 4, 2012

Hey guys! Hannah here! I *think* it's my week to post, haha Michelle, sorry if it's your week- if it is still post anyway :) I am on my iPad ( I can't find my laptop, I think it's downstairs haha) So please excuse any typos! I will not be doing questions because of the difficulty of doing them on my iPad (and I feel sick) but I wanted to give you guys an update :) I hope everyone is okay- I have some catching up to do on the posts! (maybe ill comment with my answers to your questions, that'd be easier :) I had another tilt table test, a breathing test, and a halter and was told I was a "hard patient" but that my POTS is the hyperadrenergic kind (he seemed a biot like there was maybe more to my POtS but that I am putting off too much adrenaline) Sohe has started me in a treatment plan of 5mg Midodrine 4 times a day, every three hours. Plus a dose of Propranolol, I started on 120mg (and that didn't go well! Since I'm on my iPad it'll be hard to explain everything but I will be explains more in depth on my blog in the next few days on my laptop- to our readers, my blog is and now we are cutting back to 80mg, and I will take that in the morning instead of night. I am also suppose to get a little short of a gallon of water plus 4,600 mg of sodium. So, I am a bite overwhelmed and not feeling well as I am sure you guys know all about that haha, but God is good nonetheless and this difficult time will hopefully bring better days to come :) My question fr you guys is, is anyone on a beta locker? If so, what is it, and how have you done with it? Readers fEel free to answer too :) Until next time... -Hannah <3 (I'm gonna try going to answer the Q's on y'all's posts :)

Wednesday, May 2, 2012

I can't really read the posts right now (major headache) but when it is gone I will get back on and read them.

Something is going on with my neck. Every time I get this neck pain, then I get a headache. The headache pretty much subsides when I lay down. It is strange. This headache makes me want to puke.

Anyways, hopefully next week I will make a longer post! My rheumatologist at Shands is sending me over to genetics to get tested for the types of Ehlers Danlos Syndrome that can be tested for. He also is sending me to PT at the end of this month. There I will get orthotics and braces for certain joints. I have a feeling I will be in a hip brace or some weird contraption to get my legs back to normal. My legs are all turned inwards. My kneecaps nearly touch when I stand and my feet also are turning in.


Do any of you get carsick? Do you take Dramamine? 
I occasionally do get carsick if I am reading or turned around in my seat talking to someone. I used to take Dramamine for nausea that was not from carsickness and from what I can recall it did help a tad bit. Although, you may have weird reactions to it depending on how your body is with that stuff. When I take it I act like I'm on something and act all crazy and weird. hahaha. After that wears off then I am sleeping for the rest of the day because it knocks me out.

My Question: Are any of you all on a beta blocker? If so, how did you react with it?

Tuesday, May 1, 2012

missed you guys!

Hey guys, not doing to well, in short, my gi track is worse and i just can't get enough calories because of my metabolism.... so I am adding in orgain which is a brand of meal replacement drink into my diet, only its organic and natural so i hope my body will do better with it than other brands of drinks.... and my thinking is that since the drinks are cooked, by adding in some cooked liquids into my diet i will be able to slow my metabolism down. I think its working too! But with my diet changes some of my symptoms are coming back, like my joint pain for example. I am wearing braces again : /

Sorry not up to answering questions right now, and my computer is going to die anyway i gotta save this post quick!


Jesus loves you!

Where do I start?

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