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.