Saturday, April 28, 2012

That Only Took Me Like Ten Minutes to Figure Out How to Make a New Post...

Haha. Anyways, this might be quick. I just got home from a cousin's party and I'm majorly carsick right now. Ugh. =l

Sorry I haven't been posting the past few weeks! It's been crazy busy and, well, just plain crazy, lol. POTS has been acting up more than usual, and then there was a huge misunderstanding between my doctor and the pharmacy, so I had to go like a week without my beta-blocker. NOT. FUN. Everyone's in my prayers, though.
I hope things start looking up for you all.

Prom and the all-night seniors' party is coming up. I'm more worried about the all-night party because once you're in, you're in for the entire night, and I'm worried about how my symptoms will handle that. With prom, it just feels weird going because I'm friends with all of maybe three people at my school, and only one, I'm close enough to hang out with outside of school. I'm barely there, so it's like I never really had the chance to get to know anyone. So, I'm not really sure what I'm going to do for prom if my friend ends up going with this one guy and his group; I'd just feel awkward going with them, especially as I don't even know any of their names. Anyone else have/had that problem? It's pretty minor in the long-run, I guess, but it bothers me. Especially because my mom and all my aunts keep stressing how much I'll regret it if I don't go or how much of a milestone it is. *sighs*

Rhianne- When I'm brain foggy, it's hardest, so I make flashcards and record my self saying the question and answering it, then I listen to it as much as possible-including while I'm sleeping. When I'm brain foggy, I can't really focus on reading, but the only thing I can really stress is flashcards.

My question: Do any of you get carsick, and how do you handle it? Do any of you take Dramamine?

I hope you all have a good (decent, at least) week!

Tuesday, April 24, 2012

Temperature Changes by Christine

Hi fellow bloggers! It has been an exciting week with temperature changes from 81 last Friday to snow and freezing rain yesterday. My body has no idea which direction it is heading. One minute I am running a fever from a drastic increase in temperature to freezing to death a few days later. My asthma is acting up and I am on an antibiotic. In addition that time of month came. God knows exactly how much my body can withstand. I pray the weather will improve and the temperature outside will approach a consistant degree. Meanwhile, each day I take slowly relying on God as He sees fit.

In many ways,  I look forward as our community garden grows. Fresh fruits, vegetables, and herbs awaiting harvest in the future. Recently, I have found my body craving a natural diet verses a diet full of chemicals. I am buying Kosher meats and eating organically when possible. My body is a reflection of what I eat. Therefore, I must make changes in my eating habbits. I have gained a tremendous amount of weight since I moved away from home 19 years ago. I have no excuses but myself. My confusion is Jesus Christ teaches I must put others before myself. I misunderstood what Christ meant. How can I put others fist in my life when I abuse my body with bad eating habbits? I am not setting a great example to others.  Accourding to the Bible my body is a temple where the Holy Spirit dwells (First Corinthians 6 (19-20)). Hence, by taking care of my body I am honoring the Holy Spirit. More to come in the future...


PS: I hope everyone is feeling better. As for headaches and nausea I recommend eating candied ginger, burning citrus soy candles, foot massages, and classical music very low in the background. In addition, relaxation techniques work well too such as meditation/prayer. For dizziness in the car, I recommend accupuncture. As for the brain fogginess? Doccument everything: use a computer or digital tape recorder to record your thoughts. Find out how you learn. I need to have music in the background and I need to keep moving. I sit on an exercise ball instead of a chair. I have to read things out loud and answer myself out loud to memorize something.

According to Gardner and this webpage:

Howard Gardner of Harvard has identified seven distinct intelligences. This theory has emerged from recent cognitive research and "documents the extent to which students possess different kinds of minds and therefore learn, remember, perform, and understand in different ways," according to Gardner (1991). According to this theory, "we are all able to know the world through language, logical-mathematical analysis, spatial representation, musical thinking, the use of the body to solve problems or to make things, an understanding of other individuals, and an understanding of ourselves. Where individuals differ is in the strength of these intelligences - the so-called profile of intelligences -and in the ways in which such intelligences are invoked and combined to carry out different tasks, solve diverse problems, and progress in various domains."

Visual-Spatial - think in terms of physical space, as do architects and sailors. Very aware of their environments. They like to draw, do jigsaw puzzles, read maps, daydream. They can be taught through drawings, verbal and physical imagery. Tools include models, graphics, charts, photographs, drawings, 3-D modeling, video, videoconferencing, television, multimedia, texts with pictures/charts/graphs.
Bodily-kinesthetic - use the body effectively, like a dancer or a surgeon. Keen sense of body awareness. They like movement, making things, touching. They communicate well through body language and be taught through physical activity, hands-on learning, acting out, role playing. Tools include equipment and real objects.
Musical - show sensitivity to rhythm and sound. They love music, but they are also sensitive to sounds in their environments. They may study better with music in the background. They can be taught by turning lessons into lyrics, speaking rhythmically, tapping out time. Tools include musical instruments, music, radio, stereo, CD-ROM, multimedia.
Interpersonal - understanding, interacting with others. These students learn through interaction. They have many friends, empathy for others, street smarts. They can be taught through group activities, seminars, dialogues. Tools include the telephone, audio conferencing, time and attention from the instructor, video conferencing, writing, computer conferencing, E-mail.
Intrapersonal - understanding one's own interests, goals. These learners tend to shy away from others. They're in tune with their inner feelings; they have wisdom, intuition and motivation, as well as a strong will, confidence and opinions. They can be taught through independent study and introspection. Tools include books, creative materials, diaries, privacy and time. They are the most independent of the learners.
Linguistic - using words effectively. These learners have highly developed auditory skills and often think in words. They like reading, playing word games, making up poetry or stories. They can be taught by encouraging them to say and see words, read books together. Tools include computers, games, multimedia, books, tape recorders, and lecture.
Logical -Mathematical - reasoning, calculating. Think conceptually, abstractly and are able to see and explore patterns and relationships. They like to experiment, solve puzzles, ask cosmic questions. They can be taught through logic games, investigations, mysteries. They need to learn and form concepts before they can deal with details.


Rhianne feels like crap

Hey guys can you spare a thought for Michelle K who isn't doing that well?

School holidays are over and today was the first day back (even though I have tomorrow of for ANZAC). I flippin' fainted at school. It was horrible. U was walking out of the assembly and boom!

Great. And the new deputy was yelling at me for some reason I can't remember. I always have people yelling at me after I faint for some reason or another.

So guys, y'all can tell I had a great day. My holidays were filled with assignments and the beach a few times.

Anyway, I am going to go because I am planning to go to dawn service.

Question: do you have any study tips for a brainfoggy potsy?

Sunday, April 22, 2012

What is causing your POTS?!

it's not nothing, it's SOMETHING

If a doctor has told you that you "just have POTS" or if you haven't yet found out what truly is causing your POTS, I strongly urge you to do so. Postural Orthostatic Tachycardia Syndrome is a collection of symptoms. Symptoms... meaning just a group of problems that have no identifiable cause. There are many different things that can be causing your specific POTS, as everyone is so different.

A fellow POTSY and strong activist in the POTS community, Claire, wrote a wonderful post that I encourage you all to read and check out here. She spent much time on this blog post, and it is made so that you can print it off and take with you to an appointment in the future! :)

Personally, this is really important to me, as I just found out I have structural abnormalities in my heart and blood vessels - this has now been two years after my POTS diagnosis that this "new" problem is finally being identified and addressed.

No matter what is behind your POTS, find out! Push for answers. Only you know your body and something is causing these nasty POTS symptoms.


Cheyanne: So, does your doctor think you have Mast Cell Activation Disorder? I am so curious about that and think that is a great possibility for me as well... what is your symptoms like? I hope your hip pain can settle down and surgery can be avoided! :/ yikes. I know how crappy EDS pain is!

Michelle: Have fun at Prom! :) I am not going, lol, as I graduated HS in 2006. The memories are great and it's fun while it lasts, but mine wasn't "that great". As long as you can go for bit, if you have to leave early, at least you were able to go and take pictures and have that experience! I hope you had fun!

Logan: Girl, you are quite the photographer! Those are gorgeous :) To avoid getting sick in the car, I typically like to drive. I hate being the passenger. Weird? I feel as though the motion sickness is worse when I cant be in control and drive. I avoid driving (or being a passenger) if my symptoms are bad... I tried taking motion sickness pills, but nothing seems to help :/

Hannah: I hope you start to feeling a little less icky symptoms.  I find that if I don't have at least a little caffeine, I get nasty headaches! I try to have a cup of green tea everyday if my heart rate is not too high! I also try to massage the pressure point in my hand (between the thumb and pointer finger) , which sometimes can relieve it a little. I hope you find some relief!

Happy Sunday girls, hang in there...
It's almost May!


Wednesday, April 18, 2012

So excited for American Idol tonight!!

I don't know if any of you watch it, but it is the highlight of my week. :)

My bladder has been a little better. My pediatrician just called a few minutes ago. She thinks that mast cells may be contributing to my problem with that. Thankfully, I am actually able to go to the bathroom now.

I've been sick with a virus for over a week. Plus, I have had FCAT testing Monday and Tuesday. That was pretty stressful. On the 3rd I have my 3 hour geometry end of course test and on the 4th I have a college entrance test. Hopefully I can pass! 

On Friday I have my MRI. We are suspecting that my hips are not positioned in the socket correctly because everything is so loose that it doesn't want to hold it in. That could be why my knees and feet are turning in. I think I'd rather it be arthritis doing all of this. You can treat that. The only way to treat the other thing is surgery. We don't necessarily want that because it could set my dysautonomia off, like my last surgery did. 


Erin: I am so sorry to hear that you may need surgery! I'll be praying you won't need it. :( I just feel that there is a lot of other contributing factors for must of us than just POTS. Does anyone else agree or has anyone had similar experiences? I definitely agree! 

Michelle: Your dress is beautiful! Have fun at prom. :) Are any of y'all going to prom? I was going to because my boyfriend is a senior, but I couldn't afford a dress right now. And he didn't even care to go. I guess I'll have to wait until I'm a junior or senior. 

Logan: The dandelions are so pretty! What do you do to avoid getting sick in the car? Most of the time I am pretty good in cars. Car rides are my favorite! If I try to read, look out the window for awhile, etc. then I get a big headache and nauseous. So usually I put my headphones on and listen to music or talk and not read anything or look at my phone a lot.

Hannah: That stinks that you aren't doing well. I am sorry. :( What meds/supplements do you find helps with headaches? I take Excedrin without the aspirin in it. That does help depending on what is causing the headache. If I get a sensitivity headache, then that will not work. I usually don't take it being that most of my headaches are from light sensitivity.  

God bless. :)


Hey ladies, Hannah here. I was filling in for Michelle this past Friday (at least I think it was her week LOL) And typed most of my rough draft and forgot to post! So, Cheyanne kindly is letting me post this on her day... Thanks Cheyanne (Enjoy her post today!)! (Also, I will not be answering any questions from posts after Friday, I will do that when it's my next time to post:).

I have not been up to much here this week, I have been feeling quite bad. But I have been having a yard sale and second hand shop obsession here lately, and am enjoying riding around to yard sales. It's a nice way to go out with a purpose and not have to go into a store, plus I have been trying to be sweatshop free and as a result, it seems most things I get that is possible to get second hand, I do. Most of my clothes and some other miscellaneous things are second hand. I am finding it exciting as well to be learning to "up-cycle" things and use old things to make new things. I am finding it exciting for not only the reason of being sweatshop free and saving money, but because it gives me something to do. And it's fun learning to be resourceful, it causes you to be creative and try and picture old things as new things.

I found a bin at a yard sale full of 10 cent kid's shirts, and I got a load of them and made a mini rag rug (but it got ruined when I washed it- haha). I also made a loom for no cost to me (we had a piece of wood and I used my dad's hammer and nails!) and that'll come in handy for making rugs, and scarves and possibly blankets.

I am also trying to work on my sewing skills.  I am just so thrilled to be learning these skills (please note I am not boasting- I am definitely a novice LOL). I was talking to my aunt about my current situation of being too sick to get a degree- and then we were talking about working from home (I have explored this), and I told her right now, I am working on some skills since I can't work. Maybe I can make at least some extra money off of some things I make and if not, just save money for myself (really for my parents who are graciously taking care of my needs and furthermore my wants! I am blessed!) by using "trash" to make something usable :). One good thing about having Dysautonomia- is it causes us to think outside the box! Anyway, enough of my verbal explosion about my excitement in re-using things haha.

Question time!
Erin: I am sorry to hear about you needing surgery! You did ask the question, Has anyone had sinus surgery? And I have not... But my Dad had some sort of surgery with his nose, I believe it was sinus surgery sometime ago... I don't think he had Lyme at this point but I can't remember... The only complaint I really know from him now is that "ever since I had that surgery I feel like I have something in my nose!" Haha, meaning, what you need to use a tissue for (I tried to say that as ladylike as possible!). Your "official" question was, Does anyone experience dermographia or mast cell activation disorder symptoms? I do believe when I was younger I experienced symptoms at least similar to Dermographia. However now, other than random itchy times, when me itching the skin causes it to become red, irritated and painful, I don't really think I do. As far as the MCAD, I notice a lot of the symptoms are just like those of POTS- However, symptoms that may be unique to it; I do experience allergies, flushing, random itchiness, random cough, etc. but I cannot say that it is MCAD. I wish I had more precise answers for you! <3.

Rhianne: I saw your video! Good job falling off the chair- haha. Anywho, your "question" was to finish the statement: You know you have POTS when...
You know you have POTS/Dysautonomia when... You spend your birthday money on vitamins

You know you have POTS/Dysautonomia when... Going to the grocery store without a wheelchair is your idea of adventurous 

Cheyanne: I know you are having difficulty with urination. If you haven't already, you may want to check into a urologist. I had issues with urination/ recurrent UTI's until I had a cystoscopy done. <3.
Your questions... If you get tremors or jerks, what have you noticed set them off? Sugar, like if I drink a sugary drink like sweet tea or soda really fast, I can get shaky... Sounds, usually random unexpected ones, sometimes activity, and other times they are just random. Sometimes I wake up and realize I have sweat a lot and I'll have tremors and just sleep them off (lol), so I guess also a loss of fluid. Do you know what caused your Dysautonomia? I do not, I thought for a while since I wasn't hypermobile, that POTS/Dysautonomia was my primary condition (as oppose to secondary with EDS, etc), however, I am now learning there can be other causes besides that, puberty, and viruses or other set off's similar to viruses, so that is something I want to investigate. There are some things I am thinking could be links, but I'm still trying to play investigator and put the links together (and of course, I need to be thinking of a Doc who can help me). 

Logan: What do you guys do to avoid getting sick in the car? Whether from motion sickness, or sensory overload? For me, short rides are usually okay, unless they are on a mountain or a hilly area. What I do on those roads is I try to stay engaged in a conversation to totally distract myself from it. I find eating (believe it or not) also helps to. I've never been one to throw up from motion sickness, just get the gross headaches and upset tummy. On long rides I cover myself in a blanket, so I think the eye mask idea is great! I also found (until I realized I couldn't take it because of long QT) that Dramamine did help the little bit I tried it.

I hope making it to PT appointments becomes easier for you :) Hang in there with your feeds! <3

Christine: Welcome aboard :) It's nice that we are having a variety of Dysautonomias to learn from each other, other than just POTS. I know Michelle R, I think has an unknown form of Dysautonomia. Your question, Do any of you suffer from sleep deprivation and what do you do to help it? Yes! And that's a good question haha. Right now I am in the process of dealing with a sleep Doctor to try and figure that one out. When melatonin is an option (when my BP is at a number I feel comfortable taking it with- or I just feel physically like it should be fine) that helps me to at least fall asleep. Otherwise, for energy, the only thing I know of is vitamins (if you want to know what all I aim to take- let me know!)- sometimes exercise (that's a balancing act as sometimes that can make it worse) and just nutritious food. 

My question... What over the counter medication, or herbal/vitamin/mineral supplements do you guys find that help with headaches, and/or allergies. (Note: Your headaches don't have to be related to allergies, I know a lot of us, myself included, have headaches all the time!)

Alright peoples! Hopefully I don't make the same mistake next time haha,
Until Next Time...
Hannah <3


Tuesday, April 17, 2012


I'm gonna keep this short : / I had some bad sensory overload today and even after resting for a few hours I'm still not feeling good. I wanted to share these pictures with you guys though, for the first time since I was little I picked a bouquet of dandelions last week!


Are any of y'all going to prom? - Michelle
nope, I'm taking classes online instead of attending school/ But have fun for me!!!!

Do you know what caused your Dysautonomia? -Cheyanne

Does anyone suffer from sleep deprivation and what do you do to help it? - Christine
ALL the time, I really haven't found much to be helpful. Sorry. 
If you get tremors or jerks, what have you noticed sets them off? Cheyanne
Sensory overload primarily, but they can happen just randomly too.

P.S. I know how you feel with the motility problems. When I have them my belly looks just like that! 

My question - What do you do to avoid getting sick in the car? I wear a blindfold sometimes, and I often wear ear plugs. 
 - Logan 

Monday, April 16, 2012

High anxiety.

Hey guys it's Michelle subbing for Rhianne.
I want to make this very short because I'm feeling pretty crappy.
Long story short, my hockey team is losing and it's making me feel very crummy and sad. It's tearing me apart really.
I'm having some bad headaches and such, but I'm seeing my cardiologist next week to tell him about my red legs and painful arms.

Prom is coming up also and I have anxiety about feeling irrelevant.
but here's my dress :)

Sorry I'm not being very fun and being awfully short, but today just isn't going well for me. I hope it's very good for y'all.

Quick question: Are any of y'all going to prom?

Wish you all well <3

Sunday, April 15, 2012

..and it just keeps on coming

These past two weeks have been quite interesting. Many doctors appointments and tests have been done and I feel as though I have been referred to specialist after specialist and gone through multiple tests recently. 

If some of you don't know, POTS is actually a conglomeration of "symptoms" that make up a syndrome. For me, my POTS symptoms are caused by EDS. While I am okay a diagnoses of Postural Orthostatic Tachycardia, I knew that I still had something else going on...something still just wasn't right.

Fatigue, severe exercise intolerance, chest pain, difficulty breathing, just to name a few.

After a chest ct (that I have had multiple times before), sinus ct, and a stress test, I have many more things to now deal with...does it ever end?

My stress test came back abnormal. It shows that my heart is not getting enough oxygen and my waves are abnormal. Why this is happening in someone my age? They are stumped. I see a specialist in cardiology on Thursday. Maybe this has something to do with my bicuspid aortic valve, but I doubt it. My past echos show that congenital heart problem is doing fine. I'm a little nervous about that one, but I'm keeping a positive attitude.

Other firm diagnoses from the stress test that have been thrown around...
airway collapses.exercise induced asthma.vocal cord dysfunction.possible more laryngomalacia that I may need a third surgery. 

Next, I had a sinus CT to see if my anatomy is abnormal. 
Of course it is! I have an 100% blockage in my left nasal cavity from a bone spur.
That on top of my 95% blockage of a deviated septum qualifies me for surgery
(my doctor doesn't recommend surgery if you just have a deviated septum)

Last. My chest CT :/ 
 The doctor literally called and said "well, it isn't horrible news"
After a phone conversation regarding my results, I learned that the main vessel in my body (Vena-Cava) is on the opposite side of my body. Mine if on the left and it's supposed to be on the right.
Then, my artery that feeds the spinal column isn't where it should be.
OKAY? SO? ...the only words that could come out of my mouth...
She didn't have a lot of words for me and this will be addressed with the cardiologist on thursday as well. How is that for news! I just keep asking myself how this was NEVER diagnosed before. I have had quite a few chest CT's -- really?

I just feel that there is a lot of other contributing factors for most of us than just POTS.
Does anyone agree or has anyone had similiar experiences?

I'm too tired for questions, I promise I will answer them next week :)

Wednesday, April 11, 2012

My stomach is giving me fits!

I think I ate something that upset it or either it could be the medicine. Earlier this week my bladder wasn't emptying properly. I could barely pee. I could only release about 4 drops at a time. I missed school on Monday and headed straight to the doctor. I almost had to be cath'd, but after the doctor pressed on my bladder I was able to go a little more than I was. She decided to wait. By the next day I was nearly back to normal. We thought I had a UTI, so I had been taking antibiotics. Today they called and the culture came back negative. I stopped the medicine now. We guess that was all caused from dysautonomia. The remainder of my week pretty much consists of studying! I have to catch up on the work I missed and study for my dual enrollment test. I'm nervous about that one.

Christine's Question: Does anyone suffer from sleep deprivation and what do you do to help it?
I did! I could never stay asleep at night and it took me hours to even fall asleep. My autonomic specialist prescribed me Doxepin primarily for my sleeping (and pain but it doesn't help with pain). I do not know what I'd do without that medication. It definitely works. :) Also, I am sorry your gastroparesis got so bad! I know how that feels.

My Question: Do you know what as caused your dysautonomia?

God bless!

Tuesday, April 10, 2012

Tuesday with Christine

Hi everyone!
Well I am a maid of honor in my friends wedding this fall and I am really nervous my dysautonimia will be in the way. I keep trying to explain I have to make sure the dress is lightweight enough so I do not overheat.  She has Aspergers, a form of autism, and is many times difficult to communicate with. This time of year I dread the heat and migraines.

Last week my gastropheresis was so bad I looked 9 months pregnant with triplets. Such a terrible feeling. I ended up eating gluten free for a few days and things cleared right up. It didn't help my hearing aides were in the shop for the last three weeks. I had finally adjusted to loud noises once again. So it's back to readjusting to noise. The TV is too loud at a volume of 3, 4, or 5 out of 50. The phone scared me when it rang for the first few days back with hearing aides again. Lately my urticaria pigmentosa has been acting up. I found olive oil to be a great source of comfort. I thank Jesus Christ my Savior because He can do all when I am down.
Phl 4:13I can do all things through Christ which strengthen me.

This week is Passover or Pesach in the Jewish faith. I have been really terrible this year. I consumed leaven on the second day which is unusual for me. I am a Messianic Jew so I really do not need to follow the passover abstinence of leaven but I feel closer to God when I do.

You know you have dysautonimia when: someone asks your email and you can't remember it.

Do you schedule your time? Most of the time I do because being organized does help with my dysautonomia.

How do you avoid getting sick in the car? Take Bonnine: over the counter motion sickness pills. They are chewable and work for 24 hours.
My question to you: does anyone suffer from sleep deprivation and what do you do to help it?

Blessings from the Lord,

Wednesday, April 4, 2012

I hate airboats!

I went on the boat with my family last weekend and to make a long story short there were a bunch of drunk people on airboats. Airboats are super loud! I never knew I had bad noise sensitivity, but all of the noise sent me into full body tremors/jerks. Some guy nearly backed his boat and truck into our boat as we were waiting to come in. Between the loud noise and my anxiety, I was a wreck.

I had to order special things to go in my shoes because I barely have any padding on my feet. I forgot what those "things" were called at the moment, so hopefully you know what I am referring to. When I walk you can hear all of the bones crunching. It is not a good sound at all.

My gastroparesis has been acting up the past few days. I can tell because I've had much more stomach pain than I have been the pain is up high. I've been a little more nauseated. And bloated.
hahahaha, I look like I am a few months pregnant. That is gastroparesis for ya. I am managing to eat, so it is not too bad this time. :) Mine goes and comes so much!

Oh and I am taking a guitar class now. Today I had my geometry midterm. My lovely school likes to wait to inform people about their exams the day before. Pretty lame, right? I was a bit nervous and I couldn't breathe very well in class because of it.

My Question: If you get tremors or jerks, what have you noticed sets them off?
Mine are set off by noise, sometimes pain, anxiety/nervousness, and I even get them if I am overly excited.

Hannah's Question: How do you guys do when you sit/lay down and read?
I do fairly well! The only problems I ever have is with my eyes. My eyes do not focus properly so most of the time everything gets really blurred.

Erin's Question: Does anyone experience MCAD symptoms?
All of my doctors ALWAYS want to bring this back up to me hahaha. When I had my colonoscopy done they found more mast cells in my intestines than there should be. They ruled out mastocytosis though.

Rhianne's Question: Do you schedule your time?
Not at all.

Finish the statement "you know you have POTS when?"

  • You know you have POTS when something falls in your house and everyone screams, "Are you okay???!"
  • When you go out in public and people think you are drunk or on something because you can barely walk straight. 
  • When you can get "sea sick" from experiencing the comfort from your own bed. (I heard that one from somewhere hahaha) 
I hope you all have a great rest of the week!!
God bless, 
Cheyanne :)

Tuesday, April 3, 2012

When you make a video and it doesn't upload...

So this shall be just the questions:

Hannah: No, I never fall asleep reading haha. Try reading during the day maybe?
Erin: I don't have MCAD or the other thing.

My question: finish the statement you know have pots when?
Your parents don't freak out when you faint
You go to the bathroom and don't return to class and they almost send out a search party because they think your dead somewhere
You have your professor's mobile number
People ask you so you are okay now? Multiple times a week.
You get excited when Aldi is having an aged care sale

Sunday, April 1, 2012

It's Sunday I'm in Love

Hi friends. 
I had an allergist appointment this past week. 
Surgery is in the works for my 95% obstructed nose & CT's were taken to look more deeply into my sinus cavities to see if there is other structural problems.
Has anyone had sinus surgery? I know it won't be too bad, and I'm just worried about it aggravating my POTS and start a flare up...

Also, they mentioned I am extremely sensitive. If you just barely scratch my skin, it raises or changes colors. The allergist/immunologist said it is dermographia.
Interestingly enough, I have always thought I have mast cell activation disorder and dermographia is an increase and sensitivity of mast cells. Also, mast cell activation is correlated with EDS and EDS is correlated with POTS. Whew... 
It seems like EVERYTHING is finally being connected :) 
It's so frustrating to have SO many symptoms.

My Question
Does anyone experience dermographia or mast cell activation disorder symptoms?

 Do you schedule your time?
I use my planner religiously, but I don't  schedule my "to-do list" ...only my appointments 
 I just always try to do too much. 
I hate not being busy. Even when I'm sick. 
  How do you guys do when you sit down/lay down to read? 
Oh my gosh, Hannah, I cannot stay awake for the life of me. I am desperate to stay awake and read Catching Fire but I always doze off. No matter if I'm sitting, laying, or what! I completely understand what you're saying.

Did any of you pull (or did someone pull) some good April Fools jokes today?
Enjoy your week!