Friday, December 30, 2011

...And A Happy New Year!

I hope everyone had a wonderful Christmas, ours turned out pretty well. I did make a video of Christmas Eve and Christmas Day, but there are mostly pictures and I'm still in the process of editing it. But until I get that done, here are a few pictures.
That's supposed to be "Peace on Earth"
I'll explain this one in my video.
Christmas morning.

Anyway, for a few days in a row I had been having really bad nightmares, some of them so bad that when I would wake up I was scared to move. But when I pieced together everything, I realized that the dreams were because I was forgetting to take my Luvox (apparently some SSRI's can block dreams). So a word of advice: if you've been on SSRI's for a long time (6 years for me) don't just stop taking them or forget to take them for more than a day or so!!

Other than my nightmares, I've still been having persistent joint pain to plague my day, along with all my POTS symptoms. According to my mom, there is a pediatrician that my nephew sees (and is really good) who is opening a new office soon. I'm hoping to get in to see him, so maybe he'll do something about it. And I'm getting really close to seeing Dr Grubb!! 

Moving onto the question, seeing as Rhianne was the only one to have one.

Rhianne: What did you get for Christmas? What is your New Years Resolution? I got make up, fluffy socks, PJ's, a new comforter/sheet set, shoes, a scent diffuser, a bunch of body sprays/washes and more stuff that I can't remember. I've decided to try to not procrastinate as much, though I'm sure that will only last a week or so. But on a more serious level, I'm going to try to be more outgoing and less awkward.

My question: Do you have any New Years traditions? On New Years Eve my dad always makes Louisiana style boiled shrimp and we all pig out on that, then the whole family plays Monopoly until the ball drops.

Until next year, Miranda.

Wednesday, December 28, 2011

I hope everyone had a great Christmas! :)

Mine was pretty good even though I was sick on Christmas Eve and on Christmas. When the whole family is all crammed in one area of the house it gets awfully loud and I had off and on headaches the whole time. Plus, my stomach was not cooperating and I pretty much just ate rolls and a few bites of veggies the whole night. On Christmas Eve morning my blood pressure was 172/152, but other than that my heart symptoms have been very manageable. Somehow I have hurt my hip or something. I guess sleeping again...the same way I hurt my arm. I'm so hypermobile that I sleep in the funkiest ways.

My mom picked up a stationary bike from my friend, so I have been exercising a bit. I can go fast for 3 minutes straight. I tried 5, but that did not go well. :)

I got a new kitten for Christmas. I named her Cara. She is a handful, but I love her!

All of today I have been having sensitivity headaches that last for 30 seconds to a minute and go away. I think it is probably because I watched TV as soon as I got up. Some TV shows/movies I cannot handle because they are so bright. 

Miranda: Do you ever feel like there is a subwoofer in your body?
Yes, I do get that feeling.
Oh my goodness, I am so sorry about the fire. I bet that was scary!

Rhianne: What did you get for Christmas? What is your New Years Resolution?
I got an iPod and a kitten from my parents, some clothes from my aunts/uncles, and gift cards/money. :) I haven't thought about my New Years Resolution actually. I guess it is probably to exercise more. 

Logan: I am glad the raw diet is working for you. I think I may just give it a try. :) Also, I get the same way about movies. I usually get tremors and everything while watching TV/movies because my tremors are caused by anxiety most of the time. I am so anxious the whole time and I have no idea why I get like that. 

Have a good week everyone! 
God bless,

Sunday, December 25, 2011

Merry Christmas

Hey guys, it's your monday girl Rhianne who is for once not making a video. Actually I did make a video, and I edited it and everything. It even included me doing a lovely potsy-styled version of rudoplh the red nosed reindeer.

But youtube didn't want to upload it.

Anyway, the only question this week (I think) was from Miranda who asked, do you ever feel like there is a subwoofer (I had to google what that was) instead your chest? Yes. I have had that before. Like, I would have been crawling along the ground and my pulse would be pounding and it felt like I was pregnant and a baby was kicking me from the inside.

AND LOGAN! I am soooo glad that raw food is working it's magic for you.  It's great that you are getting different fruits and veggies through the tube and even getting some stuff through mouth.

I filmed on Christmas day and I will get that up next week, so all you guys can see an aussie christmas.

This week my friend came over and stayed on wednesday and thursday night and on wednesday we went shopping. I also dyed my hair purple.

Friday we made gingerbread men before she went home. Then I chilled and went to the beach and stuff.

Saturday night wasn't that great and I was really worried I was going to be sick on Christmas day. My head was pounding and I felt so nauseaus.

Christmas day I felt good except for extremely purple legs.

I have two questions this weeks:

What did you get for Christmas?
I got a wii fit which is really good and I highly recommend it. I also got an icecream maker, so I can make healthy icecream and sorbets and stuff. Some notebooks and an itunes gift voucher.

And what is your New Years Resolution?
Mine is to get good grades in Year 11 and to be able to run 5k.

Thursday, December 22, 2011


This week has been absolutely crazy! Christmas break started on Tuesday for me, so I have 15 days of no school (kind of, I still have to do homeschool). Yesterday I had a meeting with an artist that wants me to model for her (I don't remember if I mentioned that or not..) but that went really well, I'm going to start off with 3 or so hours, maybe more later. And today our oven caught on fire when my sister was trying to make cookies. We had to call 911 because we weren't sure if we could use the fire extinguisher that we have on it, by the time 3 firetrucks came the fire had burned itself out. After that I've felt pretty bad, I feel like I have a subwoofer in my body and it's just pounding, but it doesn't hurt.

I don't have more to update and there weren't any questions so I'll leave you with mine: Do you get the feeling like I described in the last paragraph?

Until next time, Miranda

Saturday, December 17, 2011

Long time no post!

Hey y'all! It's Michelle posting this week. It's been way too long since I've posted and I'm super late with this.
Well I've been doing pretty okay, just dealing with the temperature changes and the pain that follows. I'm super glad that finals are over with and Christmas break is here :)
My next appointment isn't until January 4th so hopefully that'll go better than my Dallas visit, which was a nightmare I must say. There's only so many test someone should have to be put through in 3 days. Anyways, I hope everyone is doing splendid and if I don't post again, Merry Christmas!
til the end,
Michelle <3

Thursday, December 15, 2011

Hey guys! Sorry I missed last week, I was so tired that I slept for 14 hours straight and didn't even wake up to do my homework! Anyway... I think I'm getting sick again (sore throat), but at least my POTS has been tolerable. I'm still getting a lot of pre-syncope, vertigo and fatigue, but I'm trying to find out ways that I can manipulate my schedule to make it work. My home school reviews are slowly sneaking up on me, so I've had to work extra hard on concentrating and doing a lot of catching up. This is quite the short post, mainly because I haven't been doing much (besides schoolwork and sleeping), so I'll skip to the questions. I think only Hannah asked one...

What is one of your favorite things to do around Christmas? On Christmas Eve my sisters and I bake cookies, then my family rides around to see all of the Christmas lights. When we come back we always watch A Christmas Story. That's pretty much been our family tradition since before I was born.

My question: Do you get the hiccups a lot? In the past two days I've gotten the hiccups so many times, and when I get them they're quite painful.

Until next time, Miranda. :)

Wednesday, December 14, 2011

Sorry I missed last week!

I have been super busy with school and stuff. I had a halter monitor on for 24 hours. I still haven't gotten the results back yet. I had one of the worst black out episodes that I have had in a very long time. I'm hoping it caught that.

I'm trying to get in to see a rheumatologist, but I don't think she is going to see me until after I see the geneticist about the EDS. The EDS makes so much sense now that I'm thinking about it. My pain didn't come on until after I lost all my weight and had no muscle to support my joints. It explains my constant indestructible heartburn and why I dislocated my arm when I was a baby when I barely fell on the carpet. I'm just happy I finally may have answers, even though that isn't one I want to hear because there isn't anything I can do about it.

My breathing problems have been my main issue lately more than anything. I'm constantly hyperventilating, chest pains, etc. They have looked at my lungs multiple times just recently and did tests when the  pulmonologist saw me and they said they didn't want to see me for awhile because everything looked fine and the tests came back fine.

My tummy issues that I was having a few weeks ago have cleared up and I am back to my normal now. :) I'm not having to drink any meals like I was before.

Hannah's Question: What is your favorite things to do around Christmas?
Eat. Hahaha! My grandmas used to always have a fondue fountain and I would just sit around it the whole time dipping everything in the chocolate. And she makes my favorite cookies called foam cookies. I can't enjoy it all as much as I used to before I got sick, but I will still try.

Rhianne: I hope you had fun at your formal! Your dress is so pretty. :)

Erin: I feel you with your breathing problems. Feel better!

Logan: I am happy for you! I pray you continue to improve. :)

I cannot think of a question right now. I've been battling constant brain fog this past week. 

God bless. xx
Cheyanne c: 

Tuesday, December 13, 2011

I'm Back!

did you guys miss me? : )

I am feeling so much better its crazy! I was able to replace my feeds with those raw protein/nutrition shakes (mixed with juice for calories.) Then I started mixing them with blended fruits and veggies instead of just the juice! I can't believe how high my feeding tube rate is, and my calories are really high too!
 Just like before a ton of my symptoms have gotten better, I have more energy, more strength, and my skin has cleared up alot too! 
I was able to to 30 minutes of exercise in physical therapy without needing to rest or take a break, and the other day I was able to walk for 45 minutes without getting sick or even getting out of breath! How amazing is that? I can't believe how something as simple as a healthy diet can help so much!
Questions.... Hannah- What is your favorite thing to do around Christmas..... probably spending time with my friends in family, but that's really difficult for me because of my sensitivities.
What is your fav Christmas song... hmmm that changes all the time, this year its between Have Yourself A Merry Little Christmas by Christina Aguilera

And Believe sung by Jackie Evancho. 

Rhianne.... do I believe in natural health?.... Obviously! : )

Cheyanne- I'm so sorry you are going through those ?lung spasms? and that you are reacting badly to the medication! I have had chest pain both from heart problems and indigestion lol.. but I have never gone through something like that.... I'm so sorry!

Do any of you sew?

I do sew all the time but I have no advice on sewing machines!

No questions from me!

Sunday, December 11, 2011

It's a busy time of the year

I've been rather m.i.a lately, and I apologize girls!

I can't believe the school semester is almost over and for me, that means my semester of student teaching is coming to an THREE DAYS to be exact :/ I will be leaving my lovely first graders on Wednesday. I have been busy baking goodies for the faculty and staff & gathering little gifts for the kiddos. On top of all of that, I am applying for grad. school. Crazy. Yes, I know. I am such a stubborn person, I really will refuse to let anything stand in my way.

Now, do I feel like hell all weekend and when I get home every night. Yes.
Do I definitely over do it sometimes. Yes.
Do I have a social life? Ummm, NO!
but am I okay with that? YES!

I love what I am doing and furthering my education is so very important to me. I want to tackle everything now, so in one year, I can settle down and do what I want. Who knows where life may take you in the future...

I have three doctors appointments coming up! My breathing is getting rather out of control. Even laying in bed, breathing can be difficult :/ I am seeing a sleep specialist this week & getting a sleep study done sometime this month to get evaluated for narcolepsy and sleep apnea. Next, I have an appointment this week to learn how to give myself b12 injections. I pray this hopes with my exhaustion. Last, in January I have my appointment with a "new" Pulmonologist. (I have seem two before and no one can agree and have differing opinions)... this doctor is supposed to be the best in my area and so I hope it's worth the wait!

Overall, I think I have been pushing myself a little too hard, but I'm still pushing on - so I can't complain too much.

Cheyanne: THANK YOU SO MUCH for the lovely gift. I don't know if you know this but owls are my ultimate favorite :) You have no idea how much that made my day!! Have any of you had chest pain like I am describing? I believe so. I have pleurisy and that sounds just like what you are describing! My mom also struggles with pleurisy.

Hannah: Girls, I agree with Hannah. If you have not given out your address, I would encourage you to do so! I know it can be scary sometimes as meeting people via the internet is sketchy sometimes, but I assure you we are all mean well! Receiving mail and letter from all these lovely girls really makes my day! What is your favorite thing to do during Christmas time? Honestly, listening to instrumental music and baking! I love, love, love Christmas music and baking watching the snow fall :) P.S. I need to get some advice from you lady about all of your natural health knowledge!!!

Rhianne: Do you have any brothers or sisters? No :/ I'm an only child and grew up with just my dear Mother and also lived with my Grandma as well. I always wished I had a sibling and was jealous of everyone who did. I still am bummed at times about it! Do you believe in natural health? I think that natural health and what we do/how we treat our bodies has a huge impact on our overall health and well-being!

Miranda: Hope all is well and hang it there!! :)

Take care and enjoy these weeks before Christmas!


Me and my formal dress

I think you guys should all post. I also think we should all make videos on Christmas day. Yep! See what christmas day is like for everyone. 

Saturday, December 10, 2011

Hey ladies! Back to back posts from me! I'm sad not to see everyone else's posts, I hope you guys are okay! Hopefully you are just busy with Christmas things :)

I have been doing okay, I think I figured out somewhat of a pattern with myself; I might be fairly decent for a day or two, then I crash and then it repeats. But! I've finally been able to go Christmas shopping and its been a ton of fun. We only go to a couple stores at a time, and we don't go into the mall. I've enjoyed wheeling myself really fast down the little hills at the shopping center, I went by one window really fast and tried to look at the worker and smile while I was zipping by but she was on the phone lol.

I am still not seeing that big of a difference with my Lexapro, but I'm wondering if I had such a "dramatic" improvement with the Prozac because of the time of the year I started it, maybe the change in weather made more of a difference than I realize and I attributed it to the Prozac. I think I have less than a week yet to finish a full month on 20mg, so I am really curious to see the next suggestion from my general, and what my cardiologist and POTS doctor think, though I think they are really confused with my medication situation haha. all in God's timing my friends! I know you understand!

I finally got some Christmas lights up in my room too and I am so excited. I put colored lights up this year instead of white ones! It's something extra special to have to look at when you're stuck in bed. I am leaving next week to journey to my brother's for our pre-Christmas celebration/Birthday since we won't be together for his birthday or Christmas. And of course we are so excited to see my new little nephew Jude!

I already answered the questions in my sub post, so until next time...

Oh and my question is, what is one of your favorite things to do around Christmas? Mine would be making cookies with my siblings. Last year it was just my mother and I if I'm remembering right so I am looking forward to doing it with my sister. We've got gluten free cookies for me this year :).

Tuesday, December 6, 2011

Subbing for Logan

Hey peeps! This is Hannah and I'm subbing for Logan, this Friday is my Friday to post, so I am not going to update on myself. I am going to do my best to update you on Logan. She couldn't post today because she had an out of town follow up appointment. She has been making lots of Youtube videos, so check out her channel by clicking here. I know she was making some degree of progress with her stomach but very slow. Logan, I surely hope you have more progress and faster and get to enjoy the nutrition your body likes!

On to the questions...
Erin: Hey Erin! I had a good Thanksgiving, thank you :) Your question was, Do any of you sew? If so do you have any tips for picking out a good relatively cheap sewing machine? I do sew, very amateur so I really don't have any tips, sorry! That's exciting that you are getting into sewing, I think it's a nice hobby for us sickies to not only have something to do, but since we can't shop sometimes, hey we can just make it right? 

Rhianne: Your questions were, Do you have any brothers or sisters? Yes! I do, I have one brother who is married, and one sister, both are older than me. Do you believe in natural health? Do you mean natural remedy type things? If so, I certainly do! Good food has definitely helped my body. I haven't really been on my normal "diet" for a while, but I am slowly getting back on track.

Today I tried raw cranberries for the first time and ate them with pineapple to balance the tartness. I also topped a salad with crunchy oats for the first time. I like balance, I like my fruit and veggie servings, protein servings, and grain servings and I was trying to find a way to eat a grain with my meal besides gluten free bread since I was having trouble swallowing...Pop corn or rice cakes are usually what I go for but this time I tried oats!

 I also have quite the supplement list, I take a B complex, B-2 for headaches, folic acid and biotin for restless legs, B-1 for numbness in my legs and GI, cranberry supplements for the urinary tract, raspberry leaf supplements for nutrition and relief of menstruation symptoms, Pantothenic acid because it is suppose to soothe the adrenals, probiotic acidophilus for my tummy wummy and a raw multi-vitamin. I occasionally take metimucil which isn't natural as far as I know, but I am also trying to teach myself to take raw fiber without gagging (haha!). I think I'm forgetting some because most of my supplements are a walk away haha. I can't take all my supplements everyday because of issues swallowing and I am still working out dosages because my B complex and multivitamin has some of my other supplements in them and I don't know toxicity levels for everything. 

I also use essential oils for external use with symptoms, but as you can probably tell by my already massive reply, I could go on and on and on about natural remedies! 

Cheyanne: I feel for you girl with your lung issues happening! :(. I'm sorry to hear that your inhaler is causing you symptoms, do you think it's the breathing you have to do to get it into your lungs? Also, totally stinks about the Zoloft, I didn't know it could do all of that. I hope things straighten out ever so quickly! Your question, Have any of you had chest pain like I am describing? I do believe I've had at least something similar, I sometimes get a chest pain that goes straight to my back (or so it feels).  Also, I got your present (I won't name what it is in case someone else hasn't gotten theirs yet) but it is gorgeous, you did such a marvelous job, thank you so much. It is SO good that I thought it was store bought (that is a complete compliment, but it's so much more meaningful knowing you made it!).

By the way, ladies who haven't given their addresses, don't feel left out. We'd be joining you in on the fun too. cause we love you :). If you ever feel comfortable giving your address, do it! It's so fun and makes us feel even more united and just brings an extra smile that day you get something in the mail from someone who knows how you feel :). 

Miranda: You didn't have a question but I feel for you too with how yucky you've been doing. I'm cheering for you girl, keep hanging in there! 

Alright lovely ladies!
Until next time...

Natural Health

So I sort have got into the habbit of making videos. I would love to see some of you guys make videos too.

Anywaym, my question is do you believe in natural health?

Thursday, December 1, 2011


I'm feeling really dizzy and nauseous, so this will be a really quick post. I have Coxsackie Virus this time, so there was nothing my doctor could do for it. Until this evening, I hadn't eaten anything solid since Tuesday, which was when I first started showing symptoms. But on the good side I did get an IV (1000 mL) at the doctors today. They did a bedside tilt table (taking my blood pressure, pulse and pulse oxygen at laying, sitting and standing) and that showed that I was pretty dehydrated. I'll move onto the questions because I don't think I'm making any sense.

Cheyanne's Question: Have any of you ever had that chest pain that I am describing? Yes, it sounds like an asthma attack. You should ask about being put on a Xopenex inhaler, as it doesn't make you get the symptoms of the regular inhalers.

Hannah's Question: What is your favorite Christmas song? I'd have to say Carol of the Bells. My school choir does a pretty awesome arrangement but here is the closest one I could find to ours, although we do ours a capella. We're also singing Breath of Heaven this year : )

Michelle R's Question: What do you want for Christmas this year? I want a new camera!! And stuff to decorate my room with.

Rhianne's Question: Do you guys have brothers and sisters? Yes, I have two older half sisters and a little sister.

Erin's Question: Do any of you sew? If so do you have any tips for picking out a good (but relatively cheap) machine? I do sew, but I prefer by hand. I'd rather not sew my fingers together on my mom's machine :) You could probably try Amazon or eBay for a good deal.

Until next week, Miranda.

Wednesday, November 30, 2011

ER run last night.

After Thanksgiving I have had this annoying pain in my chest. I dismissed it and thought it was just indigestion. I'm not one to really get indigestion though. Well days passed and it was still there. My mom gave me gas-x a few times and that didn't do a thing. A couple more days passed and it progressively got worse. Last night I couldn't take it anymore and went to the ER. They ruled out my heart and tests showed that my lungs are hyperinflated and I'm having some sort of spasm. After they gave me an inhaler the pain immediately went away, but since it is a spasm it came back a little while later. I am in a bit of a predicament because the inhaler they have me using does not agree with me, but it is the only thing that takes the pain away. After I use it my heart goes crazy, I get super dizzy and start seeing things, jittery, etc. The pain is from my sternum all the way through my chest to my back. It hurts so bad it is making me nauseous. I didn't get home until 12:00 last night and we are all exhausted. I didn't go to my one class today.

I was put on Zoloft and it made my stomach stop working. My mom researched it and it can change the motility of the stomach. I have been back on azithromycin to try to get it to go away like last time. It seems to be helping a little bit. I don't have much of an appetite. I've lost a couple pounds. We also found out that the Zoloft was what was making my eyes all dilated. The day after I started it my bladder was all wacked out too! I kept going to the restroom every 5 minutes.

My Question: Have any of you ever had that chest pain that I am describing?

Hannah's Question: What is your favorite Christmas song?
I don't really have a favorite.

I hope you feel better! It is good to know I am not crazy and that someone else has had that symptom. :)

Michelle R's Question: What do you want for Christmas this year?
My iPod just broke, so a new iPod. :)

Erin's Question: Do any of you sew?
I don't have any tips for finding a good machine. I just started sewing, so I don't know too much about it. For those of you who gave your addresses out be expecting something in the mail. I've been sewing y'all Christmas presents!

Thank you so much! I have not been sick for all that long and it is just surprising that nearly every single "friend" has left me.

Rhianne's Question: Do you guys have brothers and sisters?
Yes, I do. I have 3 brothers. 1 is a step brother and the other 2 don't live with me, but they are half brothers.

I hope you guys had a good Thanksgiving!
God bless

Tuesday, November 29, 2011

Another video

Hey what's up peeps? here is a video from me. I look so ditzy in the picture youtube picked.

Sunday, November 27, 2011

...and the long weekend is over

What a wonderful Thanksgiving weekend :) 
I am SO incredibly thankful to have gotten the chance to get to know each and every one of you!!

It was so nice to have a weekend full of family and love.
I didn't dare to brave the crazies for black friday.

Instead - I laid around in my pajamas, drinking some hot cocoa, watching t.v. and shopping ONLINE!
I am so thankful for the internet!


How do you celebrate Christmas? 
-Christmas Eve is spent all night with my boy and his very large family :) His family is 100% percent Mexican and they make all home-aide dishes! Their specialty is tamales... a week prior to Christmas, the whole family gets together and hand makes everything! Their motto: If you want to eat or take some to other friends/family, you must help! Many hands make light work.
-Christmas Day is spent with my family! We have casual food, everyone brings a dish and we play games and hangout all day! It's really nice :)

I hope all is well Rhianne! Take care :)

I didn't see a post, so I hope you are doing okay :)

Hi girl. Sorry you are going through a difficult time.
The issue of friends and a chronic illness is SO hard.
Truthfully, I have been sick since I was 7 and this has been a huge issue that I constantly deal with. 
I have learned that truthfully, it will never get easier. It's hard when sometimes you can feel totally fine one minute and the next minute feel like utter hell. This quick change is hard for some people to really understand (including family!) - 
I pray that things start to get better for you :) 
Let me know if there is anything I can do for you lady!!!

  I hope you had a wonderful Thanksgiving & keep staying positive :)

You've been through so much lately! I hope things with your stomach improve :/
You have such an optimistic, wonderful contagious personality!
Keep that up - eventually things will be uphill :)
Are any of you hard to stick for IV's or blood draws? 
Oh my goodness, yes. I went through 14 IV's in a two week hospital stay. Not only is it extremely difficult to get the IV started, my veins infiltrate and give out easily!

Michelle R 
What do you want for Christmas this year? 
Hopefully your appointment went well :) 
I actually want a sewing machine & a new pair of TOMS!

Let me know how your sleep study goes! I hope you had a fabulous Thanksgiving girl :) 
What's your favorite Christmas song?

Breath of Heaven by: Amy Grant
This was my favorite song from grade school that we sung at our Christmas Concert.
It has been close to my heart ever since

My Question
Do any of you sew? If so do you have any tips for picking out a good (but relatively cheap) machine?

Take care ladies!!

Thursday, November 24, 2011

Early Post

Hey ladies!
Sorry Miranda to be posting on your night but I thought I'd forget tomorrow!
I hope you all are doing well!
This week has been so... Different symptom wise! I was in a car for 6 hours on Saturday to go see my new nephew, Jude (YAY!!!!!), and then 6 hours back, and I did pretty great! Then later in the week I could barely stand. Then yesterday I got a bit better, and today, I did great! I was energetic and just...well...great! Then I got sick before thanksgiving dinner at my uncles and have been in my recliner haha.

We increased my Lexapro to 20 mg, and I do notice a bit of a difference, I'm still quite sick but I feel like I'm a bit more stable. However, the improvements so far are not nearly as good as with the Prozac, but I've only been on 20mg for close to a week...So I gotta give it some time!
My heart rate lately has been a lot higher than usual, getting into the 140's just from walking around. However, I'm hoping to see improvement since we just upped my dosage.

On to the questions :)

Rhianne: (For the readers, she made a video!) How do you celebrate Christmas? Well, before Christmas we celebrate Hannukah! We have some Hebrew blood running through our veins!  But we do not celebrate it in the true traditional way, we have our own little spin on it. Then as far as Christmas goes, for a number of days leading up to it we usually open stockings, but now that we're all old (lol) I'm not sure if we're still going to do that. We do some of the traditional things like cookie making and decorating, decorating the tree as a family, etc. And we go to my uncles on Christmas Eve, and I like to sleep by the tree. We open gifts, my Dad makes us some breakfast and we just hang out after that :).

I don't remember everything you said in your video but I hope you are doing okay :).

Francesca: Feel better! I'm sorry you are doing so bad!

Cheyanne: I wish you the best with figuring out everything with the dual enrollment. I'm sorry things aren't going so well with your friends. I completely understand, I've been there and still am there. At first I was so upset because I felt like since my friends didn't understand, so they probably thought I was ditching them all the time. Then I got angry because I felt like they should understand, and now, I am definitely a work in progress but I am coming to a place where I am able to begin the healing process and let go of the hurt and the ill and poisonous feelings and realize that it is okay if they don't understand. It's okay if they cannot listen to me talk about my health issues, however, that is a huge part of my life- and I have nothing to feel guilty about, so if they are unable to accept that- it hurts, but it's okay. It's okay for them to move on and I don't have to feel like I ruined the friendship because I got sick. I think forgiveness is BIG in situations like this, for the sake of friendships that can be renewed, and for the sake of yourself.

Your question, Do you ever get a feeling like a limb is vibrating? Don't worry, you're not crazy haha, YES, I have. Even my whole body at times! I haven't found anything yet to combat it, just distraction and fluids. I think it is a form of tremors? Maybe internal tremors.

Miranda: I'm glad you had a good birthday week :). I'm disappointed still, to hear about everything with your Doctors, I'm hoping things get better for you soon. Hang in there, okay? :).

Your question, Are your hands extremely dry or wrinky? Not now, but my hands used to get scaly and crack open and blend and they would hurt so bad. They still get dry and wrinkly at times but don't really crack. I use a lot of oil though (almond and olive) so that may be why!

Erin: Girl, I hope things are going well with school and everything! I have not heard of that drug that your Doctor is thinking of putting you on. I hope you guys figure things out with that! =))

Your question, Has anyone been to a sleep specialist or had a sleep study before? The only ones I've had, have been the ones to check for seizures. In December though, I get an overnight (at least I think it's one night!) hospital stay for a sleep study because of my insomnia.

Logan: Girl, I am praying for you and hoping that things improve. I feel for you and am staying hopeful about your tummy troubles. Keep hanging in there girl, it's gonna be okay! <3

Your question, Are any of you hard to stick for IV's or blood draws? Yes! I've gotten fished in looking for veins, I've had to have my hands warmed up to get any blood from them, and yeah! Luckily I have not had to have my feet stuck into yet!

Michelle R: (For the readers, she made a video!) I know you are nervous about your appointment, but try to relax and know it'll be okay :) I'm hopeful! I'll say a prayer, too :). Your question was, What do you want for Christmas this year? I am talking to my parents about an inexpensive exercise bike, or maybe some yarn/fabric, or some Bibles :).

My Question: What's your favorite Christmas song? Post it if you can!  (To the subs, feel free to pop your head in here and post yours too!)
I have a few but this is one of my favorites:

Stay safe tomorrow on Black Friday to anyone whose going out shopping!
Happy Thanksgiving! I'm thankful for all of you guys!!! Readers too :)


Happy Thanksgiving!

I hope everyone had a good Thanksgiving today! Mine was alright, but I ate more than I'm used to (peer pressure!!) and am feeling quite sick. My eating schedule was thrown off too, from my family coming over and eating later. I'm also not used to being up and about for so long without resting.

Recently I've started to not like my cardiologist much. For one, he refuses to let me get fluids, then he won't put me on a beta blocker, even though my symptoms are really bad. He just thinks that I'm deconditioned and I need to drink more... Which leads me to my gastroenterologist, who won't listen to me either about eating/drinking.

My computer is being weird, so please forgive the short post! I'll just finish with the questions.

Are any of you hard to stick for IV's or blood draws? I have small veins (and being dehydrated all the time doesn't help), so it usually takes a good phlebotomist to get it, but it's never taken more than 2 times at once.

Has anyone been to a sleep specialist or had a sleep study before? No, but I have a pulmonologist (who is quite incompetent).

Have a good rest of the week!

Wednesday, November 23, 2011

short post.

My eyes have been super dilated for no reason ever since I woke up this morning. My mom said I look like a vampire. Ha! I have been having a fantastic heart day today so I went to the mall. Now I am at home with a heating pad wrapped around my knee because it hurts so badly.

I have been pretty bummed this whole week because non of my "friends" talk to me anymore. The ones I thought were going to actually stick by me have chosen other people. That is fine I guess. I understand.

Logan's Question: Are you hard to stick for IV's?
No not really.

I can totally sympathize with the doctors thinking it is all in your head. When I went to the Mayo Clinic the doctor told me I had an eating disorder. That was back when I was 90 pounds and they were about to tube feed me. I'm at 101 now. Once a certain food made me super sick I wouldn't eat it anymore and just about everything did and I guess that is why they thought that.

Erin's Question: Have you ever had a sleep study done before?
Nope! One test I have not had before. :) hahaha.

Miranda's Question: Do you get dry, wrinkly hands?
I do not.

I hope everyone has a great Thanksgiving tomorrow!!! :)

God bless!

Monday, November 21, 2011

Oops. Late Post :/

Hiii girls :) 
I just had my four month update with my autonomic neurologist last Thursday!
(Blood test results are back until later today)

He isn't changing any of my meds as of "right now" but I am getting referred to a Sleep Specialist and a Pulmonologist.

Why a sleep specialist?
Well he wants to put me on modafinil.
Has anyone heard of that drug? It is to help me stay alert and awake.
I am tired all the time!!!!!
He thinks I actually have narcolepsy or possibly sleep apnea.

More about that intersting story later! 
I have to go to school :)

Why a pulmonologist? breathing is worse. 
I am now wheezing, even when stationary.
I've actually been to three in my life thus far. They all have different opinions...
This woman is supposed to be the best, so lets hope :)

 Cheyanne: What exercises do you do? I know, I know, I should exercise. I try to just walk as much as I can, but as for a specific exercise plan...I have none :/
Hannah: What headache remedy do you find most effective? I really don't like taking OTC medicine if I can avoid it. I try peppermint tea at first, heat packs, and pressure point massages. I also like to make sure the room is completely dark and noise-free. If all fails and it's completely uncontrollable, I will take some medicine

Miranda: Are your hands extremely dry and wrinkly? My hands gets extremely dry! I have a lot of creases in my hands...they aren't quite wrinkles, but more like deep lines?
(okay, that probably made absolutely no sense. its early, excuse my writing!)

My Question: Has anyone been to a sleep specialist or had a sleep study before? 

I hope you all are have "okay" weeks! 
This cold weather is sure a killer. 
We never can win...
Heat is a killer.
Cold is a killer.
Stupid POTS.


Thursday, November 17, 2011

Quick Post!

Hey guys! I'm sorry that I didn't post last week, I was just so busy and absolutely forgot! This week is my birthday week and I already got a KindleFire, a few books, a locket and a dress. I couldn't really eat my cake, since I am having some pretty bad stomach pains and eating sweets makes them worse. I'm so excited for tomorrow, my dad is taking me to a museum that I've really been wanting to go to and I think we're going to get me a wheelchair. I also got to go sailing last weekend, which was really fun; although I had a tendency to hit buoys.

I've been having a lot of trouble with my hips hurting really bad and I'm not sure what that's from. I guess I'll mention that when I go to my primary doctor in a few weeks for spirometry testing, because I'm also having frequent shortness of breath. My primary doctor spoke to my cardiologist and he is still against putting me on a beta blocker (I'm still not on any POTS medication), so I guess I'll have to wait until I get to see doctor Grubb for some real treatment. I'm quite tired, so I'll move onto the questions.

Erin: Do you get pinky tremors? Do you have tremors on one side? My hands, in general, shake a lot, but usually on both sides.

Cheyanne: What exercises do you do, if any, and are they easy on your joints? Do your limbs feel like they vibrate? I don't exercise, mainly because I can't and also because I really don't want to, but during the summer I like to swim. My limbs don't really vibrate, but sometimes my whole body will move if I'm laying still during a particularly hard PVC.

Hannah: What headache remedy do you find most effective for you? I usually take 800 mg of ibuprofen and take a nap.

My Question: Are your hands extremely dry and wrinkly? Mine crack open on my knuckles and my palms look like this:

Until next time, 

Wednesday, November 16, 2011

Considering dual enrollment?

I just do not know if it is too much, ya know? My guidance counselor mentioned it this morning when I went to ask her a question about an online class I wanted to take. I know I will regret it if I don't try it, but then again I don't want to set myself up to fail by taking on too much either.

My appointment to see a geneticist is in February. I do not want to wait that long. I am on a cancellation list, so hopefully I can get in sooner!

Other than that nothing has really been going on. I am going to see Breaking Dawn on Friday. That movie may make me sick because of my light sensitivity stuff. If a movie has a dark setting then usually I handle it, but if it is a light setting and has a bunch of action scenes then I cannot tolerate it and end up closing my eyes for the whole thing. Oh and on next Wednesday I am going shopping with a friend. :) I am excited for that.

Francessca: I am sorry you are in so much pain! Feel better.

Logan: I'm glad you got to go to church. :) I pray it goes a bit better next time!

Hannah's Question: What headache remedy do you find most effective for you?
I usually use Excedrin and sometimes it works and other times it does not. It depends on the cause of the headache if it will work or not. When I have a headache from light sensitivity then the Excedrin will not work, but if not then it does. Unfortunately for me the majority of my headaches are from light. I hope you find some relief from your headaches and feel better.

My Question: Do you ever get a feeling like a limb is vibrating?
Don't think I am crazy because I know that sounds really weird, but it has been happening frequently lately. :)

God bless

Saturday, November 12, 2011


Hey everyone
I don't really know what to write about most of you I have good days and bad
It's been a rough week for me pain wise I really hate E.D.S with passion it makes you wanna do anything to escape the pain I haven't been to school in almost 2 weeks.In and out of the ER. I'm gonna try to go back on Monday hopefully every thing will work out.I'm Postpone the bake sale till later in the spring ,I don't feel very well so were going to wait till spring.I don't really know what else to say so I'm just gonna stop here
sorry i didn't answer the questions I'm on my net book
Francessca =^.^=

Friday, November 11, 2011

Headaches Galore!

Hey ladies!
I missed a week...Again! Looks like Michelle and I (it's Hannah) have both been missing, haha.
I am not feeling so swell. Right now, I have a headache and some stomach yuck, but hey it's all good!
My parents and I went out to a convenience store and just sat at a table there and talked over some fries and a slushie for me for my headache (I find cold stuff helps!) and that was nice and needed, just to get out of the house :). I also got to go visit my grandfather who I haven't seen in I think over a year! So that was awesome, too!

I am going sometime within the next week or the week after to adjust my Lexapro. At first I noticed a ginormous difference in my pulse, and now I'm really not noticing much at all. My pulses are going up into the 130's just from walking up the stairs, which I haven't experienced in quite a while, so it's kind of surprising my body a bit. So, I think we'll be going up to 20mg! It's still hopeful! :) It comforts me because it seems that a lot of people with POTS are on Celexa, and Lexapro is very molecularly similar, it's just I can take the Lexapro but not the Celexa.

I am tired and my brain feels discombobulated (lol) so I'm going to go ahead to the questions;

Francesca: You didn't have a question, but I am glad to hear that the new medication and the IV therapy is working out for you! That's wonderful news! And YAY for the bake sale! :)

Logan: You didn't have a question either, but I am glad to hear about the protein drink, as well as the IV therapy for the next three weeks, that's awesome! I am also really hoping you get admitted and make some HUGE headway with your stomach problems, you really need it and DESERVE it girl! I hope prayer group goes better next week, and sorry that you got sick there! :(

Erin: I am sorry you are not doing so well <3 HUGS! Your question was if we had anything like your pinky tremor, or if we experience anything like that on ONE side. I get muscle fatigue that can cause tremor in  whatever muscle that was (the fatigue can come from anything from lifting a drink a wrong way, or exercise, etc). I'm sorry you're experiencing the body weirdness! I do get things like numbness and weakness on one side!

Miranda: I hope you had a blast on the field trip! That's awesome :) Your question was, does your hair fall out? Not recently, however, before I knew I was sick, I did notice some hair loss and I have heard of it in other people with POTS. I found though, after I quit using shampoo and started using baking soda to wash my hair, it started growing a lot faster, and I notice a difference when I use shampoo now, even sulfate free compared to when I go shampoo free. Personally, I have the mindset that if the shampoo is stunting my hair growth, it's probably messing with a lot more and I do know it can cause things like headaches (and cancer!), but anywho, lol I don't know if that is something that would help or not. Also, I LOVE my B vitamins for many reasons, and that definitely helps with hair, skin, and nails. I wonder though if hair loss or slow growth could relate to the fact that we are chronically dehydrated, a lot of us are malnourished and don't have enough blood in our heads most of the time.

Cheyanne: I am sorry you are doing so poorly! HUGS to you too! Also, I don't know much about genetics and gene mutations, but I am sorry to hear about that as well. Hang in there girl, don't lose hope! I'll be praying for you, and keep us updated! Your question was, what exercises do you all do? And are they easy on the joints? Before I answer this, I just want to remind you guys that I don't have EDS, so things easy on my joints, may not be easy on yours. I do pilates mainly. Some of the exercises hurt my knees, but typically they are okay. There are many ways to do pilates and I like to be creative with them, so you can tailor fit them to your needs and what you can do!

Somebody checked in? Who was it? Rhianne? Haha. Blogger needs to be nice to you!

My question, What headache remedy do you find most effective for you? Lately I've been getting horrible headaches, and I am finding B-2 takes the edge off, but I'd like to find something even more helpful. I hate taking Tylenol and Robitussin, but lately I've been surrendering and probably making my liver sad! One day I had a headache so bad, it took gently tugging my hair where ever it hurt (found that on that internet! Sounds crazy but it did help a bit!) rubbing a mixture of about 8 drops peppermint oil to an ounce of almond oil where ever it hurt that I could get too, taking OTC meds, and putting eucalyptus oil in the shower to make it tolerable. I am BIG on home remedies, so all ideas are welcome :).

All of you Dysautonomiacs (those who didn't post too!) and Dysautonomiac readers have a fabulous weekend and keep SMILING :)

Until next time...

P.S. I am really enjoying the 50k for awareness!! Whoot!

Wednesday, November 9, 2011

I feel terrible.

I feel super crappy tonight, so this is going to be a rather short post. The doctor actually called my mom a couple days ago and told us that they found that I have a MTHFR gene mutation. We are a bit freaked out. I don't know exactly all of the details because I have not talked to an actual doctor that knows about this. My kidney doctor ran the test, but she doesn't know much about that because it is out of her field. I have to go see a geneticist about that too. My whole family may have to get tested if it turns out my mom has it.

Physical therapy seems to be doing more harm than good. I'm not going back anymore. Since I am so hyper mobile it irritates something and causes more pain. I will have to figure out other exercises to do on my own I guess.

My Question: What exercises do you all do, if any, and are they easy on the joints?

Miranda's Question: Does your hair fall out? 
I have not had a problem with my hair falling out.

Erin's Question: Pinky/hand tremors?
That happened to me today in fact, so yes I get them. Ha! In class today my left pinky started shaking uncontrollably. It is the oddest thing. Tremors happen to me quite often. My leg will start shaking uncontrollably and other times it is my arms or hands. Once I had full body tremors.

I hope you all have a great remainder of the week!
God bless

Tuesday, November 8, 2011

Sunday, November 6, 2011

Pinky Tremor

Hiii girls!
I have been rather absent lately and for that I apologize. 
I have been feeling a little under the weather this weekend.
EXTREMELY tired. Not like the tired 
I get these weird pinky tremors (I guess you can call it). It only happens on my left side and my pink will just shake uncontrollably. I took a video of my pink doing this that I might post later so you all can get a better idea of what I'm talking about. If I lay it flat on the ground, it stops. I still feel an odd sensation but it wont tremor. If I pick up my hand or move my hand upwards, it starts shaking like crazy again :/


Do any of you experience this? 
This happens off and on but has been something that has been occuring quite frequently in the past year. I also noticed that typically, whenever something happens, it always occurs on my left side.

Do any of you experience this or things happening particularly to ONE side?


Francesca: I haven't gone trick or treating since I was in 6th grade :/
Miranda: I have horrible trouble with my hair. I left a comment on your post about it as well. I'm sorry your going through that!

Hope everyone had a good week & if your in the US, enjoyed your extra hour to the day!

Take care,

Thursday, November 3, 2011

Field Trip Tomorrow!!

Tomorrow I'll be going on my first school field trip!! We're going to the Newseum and it seems really cool. I'm not sure how I'm going to be with all the walking, but apparently they have a really cool glass elevator. I'm also sick with a really bad head cold and because of POTS I don't think it's safe to take any kind of medicine (pretty much all OTC) that can mess up my blood pressure anymore.

Since it's been so cold recently, my joints have been aching a lot. But I'd much rather have aching joints then have really bad blood pooling from it being really hot outside. Earlier this week we got 5 inches of snow where Hannah and I live. We had no TV/Internet for almost two days, so I was extremely bored and slept almost the whole time :)

I don't have any more important updates, so onto the questions!

Cheyanne: My stomach does almost the same as yours!! But it happens in almost never ending cycles.

Logan: I am so happy that you get fluids and you found some good protein! All of my electrolytes/potassium and such are always wonky, but I can never find some kind of drink or powder that doesn't make me sick.

Francessa: I don't go Trick or Treating and I haven't since I was like 9. I actually really don't like Halloween.

Hannah: You didn't have a question either but I wanted to thank you for the offer :) I use EVOO for my face sometimes but I add in a bit of fresh coffee grounds.

My Question: Does your hair fall out? For the past 2-ish years my hair has been falling out in huge wads, yet I still have pretty thick and long hair.

Bis zum nächstes Mal,

I am late on posting again, so sorry!

I was having a rough time last night and I couldn't find anybody online to sub for me. My stomach issues have declined in the past week, and so has my appetite! I've already lost 2 pounds in a week from not wanting to eat. I just do not feel hungry and when I put food to my mouth I get extremely queasy. I pray this does not end how it almost ended last time. If this continues a couple more weeks then hopefully I can get on the same medication that jump started my stomach before when my gastroparesis had started. The whole process is confusing. It all began with stomach was really fast and every time I would eat it would immediately come right back out. A couple months after that I had severe gastroparesis and my stomach wasn't working much at all. Since then it has improved, but now it appears to be not working so well again.

School has been a bit stressful this week. I have so much work due on all different days and I cannot take the textbook home so I was freaking out a bit about that in class today. One benefit of only going to school one period like I do is that I feel like I can focus more on my classes more...except on my brain fog days.

Tuesday I had my first real aquatic physical therapy session! It went well. The following day I was not sore at all, which was a big shocker. Other than that nothing new is really happening with me. :)

Miranda's Question: What is your favorite quote/Bible verse that you find inspiring when you do not feel well?
  • Psalm 107:20 He sent forth his word and he healed them; he rescued them from the grave.
  • I found this on the internet the other day and loved it: "Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I cannot be miserable all of the time. In fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please don't say, "Oh you're sounding better." I am not sounding better. I am sounding happy." 
Hannah: Thank you! Oh, no...I hope you feel better. GI issues can be the worst! I'm no longer taking Mestinon. What you said about the side-effects scared me LOL.

Francessca: I am glad you found something that helps a bit with the EDS pain!

Logan: What is the protein shot called? I saw a nutritionist and she told me I was not getting nearly enough protein. It is nearly impossible for me to get it all through my diet. My blood work is showing issues because I am not getting enough protein.

God bless!

Wednesday, November 2, 2011

I'll Make This Quick

I am really tired and not feeling good so I will keep this short. My primary doctor agreed to more iv fluids, for the next 3 weeks!  I increased my meds for sensitivity (which yes are really, really, helping)! And we talked about having me hospitalized for my GI problems, but we have no idea when or IF that will happen, so I'm not even going to worry about it at the moment lol.
My joints have gotten much worse this week, right now I have both wrists, both knees, and both ankles wrapped up, if I don't they hurt, and crack all the time, and I feel very unsteady like my joints are going to give out on me.  I feel like an old lady, but I really can't complain, I know there are girls with joints problems out there worse than me.
 Anxiety has been kicking my butt too, but I don't think its the kind caused by Dysautonomia, I think its just cabin fever related you know? 
I can only remember 2 questions... does my heart rate go all over the place?  With meds and physical therapy I'm doing pretty well.  The highest we have ever caught me was 133. I get uncomfortable when my heart rate is even 100 when I'm resting, and I know most of you girls with POTS get heart rates way over 133. I can't imagine what getting heart rates of 160 or 180 or something must feel like!
What is your favorite Bible verse to read when you don't feel well
Isaiah 58:11.

- Logan

Saturday, October 29, 2011

Saturday Post =^.^=

I Finally remembered to post today, Its been a busy month and with school i tend to forget stuff.
2 weeks ago I started iv therapy at the infusion center. It seems to be helping Ive even got some of my color back. Nothing much new happened.I started a new med called  marinol for eds pain and its been helping alot it has THC the same stuff that's in marijuana idk what it is but it really helps alot.For awhile my EDS pain was unbearable and I just couldn't take it anymore.I still have Pain just not as much,I'm not gonna say it will make all you pain go away but it might help.You should always be honest with your Doctor they have your best interest and want to help you.Just a reminder the bake sale is next month November 19th
Almost forgot Its almost Halloween I don't know if you guys still go trick or treating
I still do I take my neighbor and this year were were going with my moms friend and her little girl Sophia
I usually walk a bit and if i get dizzy i sit down,I take the wheelchair so it works out.
Anyways I wish you guys a Happy and safe Halloween =^.^= -Francessca

Friday, October 28, 2011

Hey Hey Hey


So, I've really not been feeling too well. I think it's the weather, it seems like we are all suddenly getting worse, but we shall persevere! Ay? :).

I've been having symptoms ranging from heart rate issues (over the weeks my resting pulse- laying down is anywhere from high 50's to 100's), GI issues (heartburn, and nausea from the heart burn and other not so glamorous issues), headaches, etc. You guys know how it is! I had to make the decision to withdraw from my class...Well, I'm attempting too. I can either withdraw from it or audit it (take it but the grades won't count), and that depends on whether or not my appeal for a refund gets approved. I know- it sounds kind of confusing!

I also started Lexapro 10mg, unless I already mentioned that and forgot! I noticed a difference at first in my heart rate- but now I'm mainly only noticing it in my resting heart rate. I walked through our field today to get the dogs that decided they wanted to wander off (haha) and came back with a pulse of 146 (which I usually don't even get during exercise unless I'm doing squats!).

I am so dehydrated I feel like I just cannot drink enough.  Other than the yucky physical symptoms, things have been pretty good! Waiting on the Lord to show me what's next for my life! :).

Question time!
I didn't see questions from everyone, but I hope each and everyone of you are having a good weekend/start to the weekend depending on where you are!

Erin: I can imagine you have had a HUGE breath of relief with your EDS test results. I am grateful for you that it isn't! <3. Your questions from the last two weeks,  Do any of you all have any skin conditions or even overly sensitive skin? I know you were wondering if there was a connection with your EDS, but I don't have EDS and I definitely have sensitive skin. I have had mystery dry red patches show up on my face (among other skin issues) that were so difficult to get rid of, I also have to be careful with the products I use. But, I decided to go as natural as possible, so I use honey as a face wash and use oils to moisturize (like olive oil, which doesn't cause acne like some may be freaking out at the thought of slapping oil on their face!), you only use a tiny dab. I also wash my hair with baking soda and rinse with a vinegar/water solution. You can google the "No poo campaign" to find out more if you're interested!
Also, Are any of you on Mestinon? I am not but that was a drug offered to me, I was afraid to take it because of the side-effects. I recently learned that it can cause hepititus, so that made me even more afraid to try it. However, I am sure that is a rarity.
Rhianne: Your question, How do you cope when you are angry or stressed? As far as anger goes, I do it a couple of different ways, I go to the God I serve, I take a walk (if possible), lay down and think the situation through to find the best way to approach it, etc. Stess, again is a couple different ways, I go to God, I distract myself, I talk myself through it, I eat something sugary (haha), and I try and do something fun for myself.

Cheyanne: First, what a gorgeous smile and a gorgeous girl! How exciting! I remember getting my braces off, I LOVED the feeling of smooth teeth... Haha. And your question was, Does your heart rate go all over the place? Yes, I can be laying there and randomly feel tachy, and my pulse can range like I talked about above, from high 50's to 100's resting.
Miranda: You seem like you are having a really difficult time and I am sorry. Call me up if I can do anything for you! Your question, What is your favorite quote/ Bible verse that yyou find inspiring when you don’t feel well? Like you I have a number, but, one of my favorites is;
<><> <><> <><> <><>

“Therefore we do not lose heart, but though our outer man is decaying, yet our inner main is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.” 
-2 Corinthians 4:16-18

I like this because it reminds me that even though my physical body is sick and "decaying," that my life still has purpose, and it is working for an eternal glory which out weighs all of this suffering. It reminds me not to fix my eyes on what I see (my sick body in this physical world) but on what I can't see with my eyes- which is Jesus Christ and the eternal life I get to look forward too after my sick body is no longer working. <3

Logan, I am glad you finally got your NJ! I talked to you the other day, so I just want to say that I think you are such a trooper!

Francesca, I miss seeing your Sunday posts!

Tonya, it was great to see your posts too!

All you other ladies, I always enjoy seeing you post. Stay in touch :).

Alright my lovely ladies and our awesome readers,
Until next time,
Hannah <3

Thursday, October 27, 2011


I feel absolutely awful. On Tuesday night I decided that I was going to try taking Periactin because my GI symptoms are getting bad again. That was such a bad idea. I woke up on Wednesday and I could barely keep my eyes open. I'm extremely weak, having trouble breathing, have extremely low blood pressure, and have a fever still! My GI doctor apparently didn't notice that I'm never supposed to take Periactin because of my asthma and my blood pressure problems from POTS. He also never treated me for what I even came to him for (extreme abdominal pain and dysphagia). 

I still have been quite busy with school work and other things, but I'm still happy that I got to go to the Mütter Museum! It was so awesome, yet creepy! I did get a tee shirt with a drawing of a skeleton of a set of conjoined twins on it (I saw the real skeleton!). 

November is going to be a  crazy month for me!! I have my birthday then, a bunch of field trips for school, NHS meetings and more. I also talked to my parents and they're going to let me get me drivers permit! I'm trying to talk my dad into buying me this 1970's Volkswagen Beetle for my birthday, but who knows how that will turn out :)

Onto the questions....

Cheyanne: Does your heart rate go all over the place? Yes!! I prefer it to be around 65 when sitting but sometimes it can go up to 140 when I'm doing nothing. It also has been going especially high since I took that Periactin.

Logan: I totally understand you about the GI doctors!! Mine is a complete idiot!

Erin: Are any of you on mestinon?  No, I'm not.

My question: What is your favorite quote/Bible verse that you find inspiring when you don't feel well? Mine is John 11:4 (When he heard this, Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.”) and I have so many more that I use as a screensaver on my laptop.

Bis zum nächstes Mal,

Wednesday, October 26, 2011

Going to see a geneticist.

I have to go see a geneticist about EDS. I really think that is the cause of everything. It makes perfect sense. My pediatrician noticed it a year ago and started asking my mom all these questions. We never looked into it because that wasn't what we wanted to hear at the time because there is no cure. Now that we have researched and know what EDS even is, it sounds like me. If this just so happens to be it then I am going to be disappointed that we didn't check this out a year ago. It would have saved us a lot of time and money. I guess we will see though. My brain is out of commission right now so I cannot really remember much to say. I did find this gel called biofreeze that you rub where ever you are having pain and it works wonders! yesterday I went to physical therapy. I didn't do much. They just kind of evaluated me. Next Tuesday I go again and I will be in the pool...probably with a bunch of old people. Ha! :)

I have been thinking about taking another class at school next semester. Honestly, I don't necessarily want to, but I am hoping it will help me feel a bit better. I know taking one class did. Not sitting at home everyday all day feeling miserable and sorry for myself was not doing me a bit of good. The one class a day has not helped much with the social aspect of it all because I am still not there long enough and I never know what is going on because of that. I thought all my old "friends" would start talking to me again once I was back, but that didn't happen. The whole thing has made me feel better in a way. It makes me feel like I am accomplishing something. I just cannot decide another class to take. I'm thinking AP bio or English 2 along with geometry.
I have improved in some ways and I am grateful!

Erin's Question: Are any of you on mestinon?
I just started taking it today. So far I haven't noticed any weird side effects from it...which is good for me. Hopefully it will help!

My Question: Does your heart rate go all over the place? My heart rate will be normal standing up one minute and then really high the next. The other night my pulse was 171. I was diagnosed with mild POTS because every time I go do the tilt table test my heart rate is only around 115. I think my heart is confused or trying to fix itself because it is sometimes normal and then a few hours later it isn't. 

God bless! I hope y'all get to feeling better.