Friday, May 27, 2011

How's it Going? :)

Hello ladies and readers! I hope everyone is doing fabulous! My week went… Good and crazy! I was in the ER on Saturday night, got antibiotics for a UTI, and the UTI made me more tachy than usual which was really upsetting. However, the longer I am on these antibiotics, the less tachy I feel so it’s got to be from the infection. I graduated on Wednesday and it was amazing (It was great to get to see Miranda on two different days!). I was so nervous, but everything went so well! I was able to walk up the stairs to the stage, too! They honored me so sweetly as well, and said nice things about me with how I’ve handled my health condition. It was quite special and I feel so blessed by God. I am glad I went! I am so tired now though! But hey, I’ll take that over a bad crash any day!

My dad and I got me some Lipoic Acid (or Alpha Lipoic Acid, one of those…I may also be misspelling lol), to try! I’ve not tried it yet, so no reviews. It’s always good to be cautious with new things so I’m trying to be strategic about it. I also got some chewable vitamin C, which was less expensive than the chewable I already have for the dosages I want to take. Supposedly high doses of vitamin C helps both allergies and UTI’s (except too high of doses may cause some GI stuff), except you’re not suppose to take it when you’re on an antibiotic for a UTI because it can mess with how it works. But anyway, I’m excited for that.

Today I sat outside a lot with my mom and cousin. I love sitting out in the sun when it’s  not super hot and humid. Vitamin D all the way gals! I also reorganized a good bit of my room (which I seem to do all the time!). So that was nice. I can’t wait to read the books I have about herbs and their benefits and other home remedy type of books. My dad also got me a raw food recipe book, and though I’m not on an all raw diet, it’ll be cool to see what new things to try! So, I got those books in a special little place.

I know all of you ladies really aren’t feeling the best right now, so I send my love and I will be praying for y’all. Keep on keeping on! I know Rhianne is going into hospital soon for two weeks, and you will be missed my dear! I’m not completely sure what’s going on with Miranda, but I do know you are not feeling well either…Tana’s getting blood work today and not feeling so great, and Logei I know is throwing up again L
. Ladies, ladies, ladies…FEEL BETTER! Please? ;-) If only it were that easy, I know.

My answer to Logei’s question (What is the craziest thing you have done because of your dys?): Hmm…That’s a tough one. I’m really not sure I’ve done anything too crazy with it. More so just the oddball stuff most of us do, like sitting on the floor in a store and that kind of stuff.

My answer to Rhianne’s question (What sort of mobility aids do you use?)
None at the moment. I want to get either a wheel chair or a rollator. I’m going to have to keep my eye out for a good deal. Enjoy sticky!

I don’t think Miranda had a question, if I missed it, let me know!

My question… What are some food items you use to treat ailments?
Right now, I’m trying to use honey for allergies and black strap molasses for iron deficiency (1tsp to 1tblsp of each)

By the way Rhianne, I’m planning on using a cinnamon water mixture to ward off mosquitoes! Thanks for the tip!
Until next week my friends, bye!

Thursday, May 26, 2011

Bad Day? More Like Bad Year

Hey everyone! Before I get started I just want to let everyone know that this is going to be rather short, since I'm feeling really bad again and can't concentrate.

Any who...We just had another really bad storm a little bit ago and it was toasty out earlier (not that I would know). I only stood up once today, with the help of my mom, so I missed College Day at school (which is pretty much a bunch of seminars about college then a panel of my schools alumni answers our questions).

I'm still pretty agrivated at my endocrinologist, that I had an appointment with earlier this week, all he did was give me numbers to an autonomic specialist and a neurologist that specializes in headaches. I tried to research them and apparently they're some of the best on the east coast.

I did make it to Hannah's graduation last night, since I had to sing with choir, and I almost passed out again. It was super hot in the chapel and we were all squished. One thing that really stuck out for me was this woman sitting behind me that asked what Hannah's illness was, and I had to answer her. I just told her that we both have POTS and the main thing is that we can't stand much without our blood pressure and pulse going crazy. I really should write up a little thing to say to people when I'm put on the spot like that.

Hannah and I at Baccalaureate.

Here's a little something for Rhianne (I watched this like last week after like 10 years!).
Banana's In Pajamas

On to the questions...

Hannah's question: What is your favorite relaxing thing to do, after a stressful POTSy day?
After a bad day, which has been almost every day recently, I just want to sleep or watch a movie (an IV would be wonderful too, but that never happens).

Rhianne's question: What sort of mobility aids do you use? As of now, I don't use any, but I'd like to get this one stool for in the shower (it swivels!) and a wheelchair.

Logi's Question: What is the craziest thing you have done because of your dys? (Don't feel bad, I like to eat brownie batter too, and it makes me sick.)

I haven't really done anything crazy, except go through a bajillion and one tests. Unless walking 10+ miles in NYC, then running 10 blocks in 4 inch heels at almost midnight to get to the subway counts. I have no idea how I did all that.

Wednesday, May 25, 2011

New Email

Hey everyone, it's Miranda I just wanted to let everyone know that we have a new e-mail, since Rhianne apparently made the password wrong! It's now Feel free to e mail us!

Tuesday, May 24, 2011

Tuesdays with Logan

Well I know it is 2 am , but I have insomnia so I'll post : ) 
 I've had a couple of symptoms all my life, but I didn't really have any noticeable problems till 5th grade. I began having migraines, vision problems, and some mild GI problems.  We just brushed them off, and figured they were no big deal. In 9th my headaches everything got worse, and I started having new symptoms like dizziness, black outs, insomnia, rare muscle jerks, and a few other things too. We realized that something was wrong and I started seeing doctors, but we still weren't all that concerned. After all I was still going to school, church, hanging out with friends, I even went out for track for the first time in the spring!
But that summer I got sick and I've been homebound since. We spent a long time going from doctor to doctor and running lots of tests (sometimes repeatedly). Eventually my primary doctor called us up excited saying that she new what I had and wanted me to come to her office. She explained Dysautonomia to me, and the more I looked into her diagnosis I couldn't believe how perfectly it described everything I had gone through! Having a tilt table test for POTS was wonderful too, getting some answers felt good. Unfortunately, finding doctors willing to treat me or take me seriously has been a bit of a challenge. 

Five things about me:
1.  Jesus is my Lord and Savior, and Dysautonomia will never take that from me.  
2.  I love music!
3.  I love to work out, even if sometimes all my body can handle is pilates or stretching.
4.  I am a tree huger.  Literally.... I like to hug trees : )
5.  I like to watch Veggie Tales when I'm angry. You just can't stay mad when you watch Veggie Tales.

"Which is harder, the physical or emotional toll?"

Emotional... definitely

"What is the best non-drug thing that helps you?"


"What is my favorite relaxing thing to do after a stressful day?"

*guiltily* If I'm feeling up to it I love to cook and bake even though I can't eat solids, and I like to eat liquid cake or brownie batter despite how sick it makes me. I just can't resist!

"What motility aids do you use?"

When I'm feeling bad I use a wheel chair, and often sit down in the shower or use something as a shower stool. 

My question..... What is the craziest thing you have done because of your dys?

- Logan

Sunday, May 22, 2011

Mondays with Rhianne

So I'll start with my potsy story. For me what happened was that around my 13th birthday, I started getting episodes of blurred vision that would happen for a few hours every few months.

Then in Sptember they very suddenly started happening everyday. I also suffered from extreme memory loss.

Then I went to a certain children's hosipital and got a convursion diagnosis and I was in the mental ward (fortnightly psych appointments) from December to Febuary (when the mental ward finally agreed I wasn't crazy).

Then in March I suffered from severe balance loss and was admitted to hosipital where I recieved my diagnosis.

Guys, I have recieved so many tests. I have worn three holter monitors, had an eeg, stress test, a heart ultrasounds, brain MRIs and MRAs, FULL DRUG SCREEN  , so many urine tests, I would say around 40 bloodtests and I am probably forgetting a few things. Oh, doctors like hitting me with something called a queen's square hammer. I think there are a few of them I just want to hit in the face.

Five facts about me:
1. I love playing trombone but can't with pots and vasalva induced syncope
2. I am a yellow belt in tae kwon doe
3. I have a labrador called Honey and a uni sex bird called Sammy Jo.
4. My personal best for doing a rubik's cube is 57secs
5. I secretly love dugongs

(a picture for Hannah who thought dugongs were cake)

Now onto the questions:
Tana: you asked what do you find harder the emotional or the physical?
It is definately the emotional. I hate having no control over body, unable to make definate plans and I have gone like a fortnight without leaving the house. Oh and I really hate I now have a walking stick. His name is sticky and he is really ugly. I need to pimp him up I think.

Miranda: what is the best non drug thing that has helped your pots?
Exercise! Atleast I have some leg muscles now. I do half an hour on my exercise bike. I also wears skins (compression tights that are waist to ankles) . In January I tried Bowen Therapy, I might try that again.

Before I answer your question I want to say:

Oh my gosh you are graduating! I am so proud of you Hannah! That is so flipping amazing. I know you have been going through a rough few days so I am really hoping you got to go to your thing tonight. Wait just got your inbox: you did! I love that. You should have seen my face smile.

Anyway and you asked: what is your favourite thing to do after a stressful potsy day?
When I feel like crap, I watch Degrassi. I have it series linked so every episode records, then when I am potsy I chill with my big, fat dog Honey and we have a marathon.

My question: what sort of mobility aids  do you use?
I use a plastic little stool to sit on in the shower. I also now have a walking stick because of ataxia (balance loss). It is so ugly. I hate it. They don't even make them groovy looking. Don't eighty year olds know that a red wooden top does not match a black metal bottom!

Anyway, tomorrow you meet our final hostess Logei. So keep smiling and keep trying!

Friday, May 20, 2011

Fridays With Hannah~

Hello Dysautonomiacs! Allow me to introduce myself. I’m 17 and I started getting POTS when I was about 14. It started with “little” things, like feeling as though I couldn’t balance, or I’d start feeling sick and sweaty after standing for too long. I ended up going to the Doctors with cold hands and feet, so they gave me a blood test (the first of many) and they thought I had a disease called Scleroderma. To make a long story short, I didn’t have that. I started going to GI docs to figure out why I had trouble swallowing, and that lead me to my current GI doc, who said he thought I had POTS (a condition I hadn’t heard of… but then again, I hadn’t heard of Scleroderma, either)! Of course I then went to a cardiologist, then got a tilt, and… I got diagnosed with POTS when I was 15. And that, my friends, is my POTS story!
                     Five facts about myself…
        1. I am a passionate follower of Jesus Christ!
        2. I love my vegetables…Especially ones that contain B-1!
        3. I didn’t like Gatorade until I had to drink it.
        4. I love a good art project!
        5. Daisies are my favorite flower because they seem so cheerful! :)

My answer to Tana’s question(Which is more hard for you all? The emotional toll, or the physical one?): I’d have to say the emotional one. I think we could handle the physical pain better if it weren’t for what it does to us and our families and friends.

My answer to Miranda’s question (What is the best non drug thing that helps your POTS?): Okay, by non-drug I can use vitamins, right? Vitamin-wise, I’d say B-1 and a mult-vitamin. B-12 as well. I can notice a difference in how I feel when I do and don’t take them. Also, eating lots of vegetables (which may or may not be a good idea for those with GI problems). Plus, slowly getting into an exercise program. Right now I’m doing Pilates (if anyone out there is looking for a program) and building up muscle strength really does help, especially in the legs~.

My Question: What is your favorite relaxing thing to do, after a stressful POTSy day?
I like to work on a project, watch TV, or talk to a friend.

Alright ladies and readers, I sure hope you guys are feeling okay. <3 :) Have a wonderful weekend! Rhianne is Monday! Let’s get excited :)

Thursday, May 19, 2011

Miranda's POTSie Story

Hey everyone! So I first started to get POTS symptoms after getting a severe case of strep throat about 5 years ago, all of my doctors just said the symptoms were from growing so much. I was finally diagnosed in April 2010 after a tilt table test, stress test (which I failed), heart MRI, an echocardiogram, a holter monitor and a 30 day event monitor. I plan on scanning all of the doctors reports, eventually, and putting them on my blog.

This past year I've done part time homeschool and part time at school. That's worked out pretty well for me, with the exception of my brain fog, that I get quite frequently. I still miss some school, from all the doctors appointments and really bad days, but I still have pretty high grades. I plan on doing this again next year, but also going in for a class (or two) at my local community college.

5 Facts About Me:
1. I have severe OCD (that's now controlled by medicine), so I color coordinate my closet.
2. I've been learning German since I was 7 and plan to study abroad, in Germany, while in college.
3. Music is my love...forever and ever.
4. I am the tallest female in my immediate family.
5. I love modeling and photography, but I want to be a doctor.

To answer Tana's question: It's generally the physical, but when I'm really bad, like recently it's been more emotional.
My question: What is the best non drug thing that helps your POTS?

Wednesday, May 18, 2011

The TanaBanana Story(:

Well, we think I've had POTS for almost two or three years now, but I've only been diagnosed since Feb. Many times Drs. have said I was lying, faking, or just plain crazy, but this disease is about as fake as a BP machine. Here recently I've missed so much school. school is so ready to put me on homebound, because I make them look bad. :( Countless rumors have been started about why I miss so much school. Thank goodness for my two, true best friends (and boyfriend). They stop the rumors in it's tracks. I don't know where I would be without them. At first, people asked questions, and I didn't really mind, but after awhile people stopped asking, or just stopped caring. I guess my biggest problem with this isn't the physical symptoms, it's feeling like I have no control over my own body, and I no longer have a choice in what I can or can't do, and how I go about doing it. This is my story, no it's not a tragedy or anything grand, but it's MINE, and I can write it.
5 Things about me: 
  1. I love toast
  2. I am almost a black belt in Kung Fu (most people don't know that about me, so y'all should feel special :)) But, I had to quit. :/
  3. My favorite number is 6
  4. I listen to literally almost ALL different genres of music
  5. I LOVE Nemo(:
My Question: Which is more hard for you all? Or the emotional toll, or the physical one?