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;
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“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.

Monday, October 24, 2011

It is Tonya again!

So guys I am back, I got aa contact about a half hour or so ago, asking me to sub so here I am. I have gone through the posts best I could in the last half hour, I read them and been writing down my answers to questions before posting. I unfortyuunately can';t read what Iworte do to my EDS hands lol. All well, anyway, I have been doing a little better I guess, I am working hard with home pt and ot and improving little by little and have an ortho appt. comoing up to evaluate my need for braces, pt and ot both say I need them on me knees, ankles and most likely back and elbows, I alreadyw ear wrist ones, but they are old so need new ones, but I also need to be rechecked for the angle deformities in both elbows, I was apparently supposed to see a peditric neurosurgeon at 12 and at 19 now never saw one, so not good, I also am finding  new GP and a specialist for one of my meds and then I need to see cardio. My computrer screne smashed this weekend so using a desktop in the living room, I am hopefully goingt o get another computer at some point somehow, I have no income, but I have a giftcard and Mom may pay for the rest since we didn't do anything for my B-DAY and whatever, things ar crazy at my house still. I have PT tomorrow, OT Wednesday, PT Thursday and OT again Friday, OT is getting me a reacher and trying to get a rollator to replace my walker and trying to get a shower chair as well andsome other stuff, but no money makes it hard. I am hoping to be able to hand out Halloween candy this Halloween and was supposed to have a friend and her boyfriend over to carve pumpkins, have dinner and watch a movie, but she said yes then didn't come, so dissapointed about that, but all well. I am doing better in some ways and others not, but am very thankful for the support of a couple people I met online in a forum and thanks to them I am working on some stuff and getting through my days and then many others are helping me too, just not as close. Okay my hands and arms are hurting a lot, so here are the questions. Is anyone on Mestonin? I am not on mestinon and have never been. I do know many potsies on the forums on facebook who are tho. If you cpould spend the day with anyone throughout history , for a day who would it be? That is a very difficult question, I wouild want to spend the day with differnet people Idont know I do';t really have one particular poperson, unless God could come spend the day with me, but have me still be alive, I would think maybe some people from different time periods, like native Americans from the 1400s and people in women's history, or Martin Luther King, Ghandi, um um i DON'T KNOW IF i HAD MORE TIME i WOULD HAVE A BETTER DIFINITIVE ANSWER FOR YOU, PLUS THERE ARE JUST SO MANY GOOD PEOPLE i DON'T THINK i COULD EVER PICK JUST ONE WITH MY DECISION MAKING, i HAVE ocd AND ALWAYS WANT TO MAKE THE RIGHT CHOICE LOL. Have you tried D-Ribose? No I have not, was going to, but don't have money to., I heard it helps a great deal for potsies, chronic fatigue and more. Any eye issues related to POTS? Yes I do, I have blurry and doube vision that started wih POTS, but the docs think EDS has caused me eye trouble and want an exam done, I also have general trouble seeing and reading stuff, most likely EDS related.  Do  you have tailone trouble? yes I do, I injured it in a sledding accident and alwasy attributed it to that and EDS, I have a lot of pain and have trouble sitting sometimes and standing or laying certain ways because of  it etc, it is annoying. Do you have overly sensitive skin? Yes I do, I have had excezma my whole life and also have these weird flushing type things and things that appear to be allergic reactions out of nowhere, thinking I have mcad, benydryl helps some as well as topical cream, sometimes corizone or various others. How do you deal with anger and stress? I talk it oput with the couple people online whom I trust, I cry, I do art stuff if I can and read if I can, go on the computer and do random stuff and I liek to try to find soemthing silly and mindless to laugh at. All right glad to have subbed again, I hope you guys have a good week and I hope to do this again, sorry if this was not great, the caps locks was accident back there, but too hurting to fix it, sorryI am having arm and hand issues as I said. HUGS TO ALL! Sincerly, Tonya

Sunday, October 23, 2011


I find it so interesting that a lot of us share skin problems, particularly KP. I really think there is an EDS correlation. What do I know though... thoughts?

I am so sorry you all are struggling with stupid skin as well. Like my word choice there? haha

I have never met anyone who has had it like me, so in a way, it is kind of nice that I can share my frustrations that I may have sometimes with you all (as you can TRULY understand). I know it seems like such a little thing that you shouldn't complain about (I get told that all the time), but it really affects my life - more than anyone would ever know.

Okay, well enough about that!

First, I love your advice Logan about raw food diet. I think I might slowly give that a try. It is hard for me to eat large meals, so I usually snack throughout the day! If I have questions, you will definitely be my go to girl. Also, I am so sorry to hear that your stomach hasn't improved :/ And heck, if you found something that you can eat, even though it's vegan broth, boy you go girl :) haha, I love your attitude!

Second, Rhianne keep your head up girl. We can share what works/what doesn't with our skin! I have tried SO much stuff and invested a lot of money on different products/remedies/etc... 

Third, Cheyanne, it's wonderful that your doing well! I will pray that you won't need surgery and everything works out for you. Also, that the Lyme test is negative! I couldn't be more excited about the Fall weather as well. SO much easier to breathe - although, my heart rate has been higher than normal? Kinda weird?

Fourth, Miranda sounds like you have a BUSY week! I hope it was enjoyable :) Don't you just hate the rain and how icky it makes you feel?! I hope things start to improve and the rain goes away!

Next, on to the questions!

Rhianne: How do you cope when you are angry or stressed? Actually, this is an interesting question. I feel as though I have become more and more irritated with the small things lately and I get easily frustrated/annoyed. I think it has to do with POTS/brain fog/etc... I feel bad that I snap easily and just don't quite understand where it is coming from sometimes. My number one stress reliever is music! I love my music and it's the one thing that gets my through hard times. I would recommend Jill Palmer's instrumental music. Very soothing :)

I think you were the only one who asked a new question!

My Question: Are any of you on mestinon? I think it has been helping me a great deal but I am curious if any one else has tried it...

Tomorrow starts a new week!Take care everyone :)

Thursday, October 20, 2011

No Post All Month?

I really need to sort out my life!! I've felt pretty blah and have been having a really bad time with my entire body/joints because of the rain we've been having here. On Monday I had the National Honor Society Induction Ceremony, but luckily I didn't pass out :) although I did go blind some. Tomorrow I have to sing for a school program and go to a party later that night. Buut, I am really excited because my dad is taking me to Philadelphia on Saturday to go to the Mutter Museum!! I'll have to walk the whole time but it's so worth it. So, as you can tell, I'm very busy and that's not including school work.

I'll move onto the questions since there's so many of them. :)

If you could spend a day with someone throughout history who would it be? Oh, man! Why'd you ask such a hard question?! There are many people, such as Hatshepsut, Jesus, and Elie Wiesel to name a few.

Has anyone tried D-ribose?  No.

Do any of you all have eye issues that are POTS related? My sight is getting worse, so I'll be needing new glasses soon. I don't think that is POTS related but when I have presyncope, I often go blind.

Does anyone have problems with their tailbone?  No, but I do have back pain and scoliosis. I find it extremely uncomfortable so sit/stand up straight and put pressure on my spine; I'm also pretty sure that my hips are uneven from scoliosis, but that has nothing to do with my tailbone.

Do you have an interest in any medical shows, if so any in particular? I do like medical shows, but I'm more into history shows. I like Mystery Diagnoses (I can usually diagnose them first!), A Baby Story, Trauma: Life in the ER and Bones (even though it's not really medical-more science).

If you could be good at or participate in any sport despite your Dysautonomia, what would it be? Even without dysautonomia, I still have many health problems that prevent me from playing sports, but if I could I still wouldn't like sports.

Do any of you get excessive amounts of phlegm immediately after eating? Sometimes I do, usually if I eat something dry.

Does anyone have Fibromyalgia , or Lyme, and if so, any advice in what to do to for testing or ruling other things out, etc.? I'm pretty sure I have fibromyalgia (I have all the pressure points) and my mom has it too. But I don't really have any advice.

Do any of you all have any skin conditions or even overly sensitive skin? I have dandruff on my scalp sometimes and very sensitive skin. Even taking a shower or washing my hands can make me break out in hives.

How do you cope with you are angry or stressed? I usually just want to be left alone and to sleep, then I usually get over it. 

I hope everyone is feeling ok!!

Bis zum nächstes Mal,

Sorry, late post.

I really did not feel like posting yesterday. Today has been an unusually good day. Fall weather has came finally! I walked three quarters of a mile with my mom. I've been working on getting something to send to everyone who gave their address out. Oh, and I got my braces off. :)

Other than that I have just been studying for mid terms and going to doctors. I see my primary care doctor tomorrow. They are seeing about putting me on Zoloft and discussing the stone in my appendix. It may have to be removed. We are going to get some sonograms done and see. As of right now it is not bothering me. Let's pray it doesn't start because I cannot afford another surgery. Last time I had a surgery I got ten times worse that I was prior to that.

Hannah's Question: Does anyone have fibromyalgia or Lyme and if so any advice..? 
I have fibro as you already know. I am getting tested for Lyme in a couple days. :) And thank you, I am not very good at eating. I eat the same things nearly everyday and I have been trying to change that. Once something makes me sick so many times I end up not liking it anymore. I am not really picky because of it. Ha.

Tonya: Hi Tonya, welcome to the blog. :)

Erin's Question: Do you have overly sensitive skin?
Yes. I have KP too. I have had it since I was little on my legs and arms. Now that I am older it went away on my arms, but it super bad on my legs. It is really embarrassing and I can never wear shorts or anything. I can use some facial scrubs, but I have noticed that certain brands make me break out in hives.

Rhianne's Question: How do you cope when you are angry or stressed?
I pray, blog, and listen to music. :) By the way, your KP on your arms reminds me of my legs. I have never seen another person with it until now!

Logan: Thanks for the raw nutrition advice. :) I cannot eat that much at all.

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

Wednesday, October 19, 2011


Oy.  I feel horrible guys, I really do.  But at least I have noticed a little improvement in my sensitivity! The medicine seems to be helping a little, and although sound, lights, colors ect still hurt, it seems to take longer for it all to make me sick. 
My stomach has not improved a single bit over the last week, but I found a treat maybe I can have that doesn't bother me.  Its a type vegan broth, and its really good!  yeah I know I know I'm pathetic.... BITE ME.


hey if you want to try the raw food diet go right ahead, it really helped me, even on just a liquid diet!

Your question about phlegm...  Um I have no idea what a normal amount is lol. But I sure do get plenty! It is so irritating.

Hannah- no I don't have fibro

Hello Tonya, welcome! I hope to hear from you more often, I am so sorry to hear about what you are going through, but I want you to know you are in my prayers!

Erin, I am sorry to hear you feel like an old lady, lol I know I don't have it like you do, but I have had an unusual amount of joint pain lately, and I have begun to wrap up my joints again from time to time. It really seems to help alot.

Rhianne... I miss running so much! I feel ya, and I understand the embarrassment of skin problems... I've had ache for a very long time, and I never knew until recently that my diet was the biggest factor in my skin problems!

How do you cope when you are angry or stressed. JESUS!!!!! (although I admit, sometimes I forget to turn to Him when I need to, and then I end up taking out my feelings on other people.) 

Ttyl. Logan

Monday, October 17, 2011

Balance on a tightrope

That's what pots is like...a balancing act. Unfortunately I have no balance and I overdo it on a regular basis. This week I did way too much (geography excursions) and even though it was worth it, I felt crap on Friday and Saturday.

But guess what? I am getting a new bedroom! I am moving into the garage but I have to do it up and paint it and stuff so I won't move in for a while (probably around New Year's) but I will keep you guys posted on how it is going.

If you could be good at or participate in any sport despite your dysautonomia, what would it be?
I wish I could run, like long distance running. At the moment I can run for 5mins but I would love to able to go for a run.

Do you get excessive amounts of phlegm? No, I do have dysphagia but I am a choke-then puke sort of person.

Do you have fibro or lyme? I do not. I was tested for Lyme disease and it came back negative. And I don't have pain or anything so I doubt I have fibro.

Do any of you all have any skin conditions or even overly sensitive skin? 
Keratosis Pilaris for the world!

Yep, I have been plagued with this ugly skin condition forever and I had eczema as a baby.

My question: How do you cope with you are angry or stressed?

I go on the trampoline. It's my way of dealing with things. Especially at night it is super fun. 

Sunday, October 16, 2011

Is it break, yet?

Hi girls!
I'm sorry I didn't post last Sunday.
I had to miss some student teaching as I wasn't feeling all that great.

It sounds like everyone just isn't doing to well lately :/ I hate hearing news like that and I wish you all the best and will keep you in my prayers. I hope more good days come your way and that you at least get a little "break"... hang in there! You all are SO STRONG <3

GOOD NEWS: I got a call back from my geneticist who confirmed that I do not have VEDS (Vascular EDS),  but I do still have EDS Type III. She said that she will continue to call me every 6months to check in, as all forms of EDS can have severe/fatal symptoms. They are so nice, I couldn't have asked for such better specialists.

My EDS pain has just been taking a toll on me. I am popping and cracking more than usual and back/hip/shoulder pain is getting really old :/ I just feel like an old lady really, like everything is starting to fall apart and I just hate to "complain", so sorry that I am letting out a little via our blog :) I know you all understand!

Anyways- I had to run to my moms to do this post as my computer is broken :/
So on to the questions!

Do you have any interest in medical shows? YES! I have actually always loved medical shows. It first started with the show ER and has just progressed since then. Some of my favorite include Dr. G: Medical Examiner - Greys Anatomy (not really "real" but still) - I even love Dr. 90210 and watching them do plastic surgery. I really love it all! **weird, maybe!** ha

If you could be good at or participate in any sport despite your dysautonomia, what would it be? I agree with Hannah. It would definitely be volleyball. I used to play and I did club volleyball, so I was always on the go and traveling. I think coached grade school volleyball for four years. It is one sport that has my heart and I wish I could still play. I miss even the intramurals that I used to do :/ It can be hard to watch your friends participate in activities that you love, but just can't seem to do...

Do you get excessive amounts of phlegm? YES! Why is that? I have ALWAYS noticed this, especially with milk products. Also - I always seem to have a soar through. Not like the scratchy kind, but like it's inflamed, swollen, hurts to swallow and super sensitive. Does anyone else experience this?

Do you have fibro or lyme? I do not. I was tested for Lyme disease and it came back negative. As for fibro, I think it could be a definite possibility. I seem to fit a lot of the symptoms, but sadly, most doctors that I have been to in the past have not recognized it as a "true problem". I by NO MEANS agree with that statement what-so-ever! I know of people who have both of these awful conditions and I pray that more awareness is brought about!

My Question: Do any of you all have any skin conditions or even overly sensitive skin? (I think some of it may be due to my EDS, but I can't even use face scrubs, not even the organic/all natural/paraben/dye free kind!) I get red all over and I always get extremely irritated. I also have a very embarrassing condition known as Keratosis Pilaris that I hate SO much and have struggled with. Just wondering if any of you struggle with this type of thing as well...

There WILL be a ray of sunshine at the end of the tunnel sooner or later :)
Take care ladies!

Hey I am subbing for you guys

Hi my name is Tonya I am subbing for the blog beecaue Rhianne asked me to, I was honored to do so Okay so I just want to say a quick blurb about me. I am 19 and have POTS and EDS along with so many other things. Okay so on to the questions, Question was, Do you have any interest in medical shows?, Yea actually I a cvery interested in medical shows because I want to be a doctor, I love to watchh mystery E.R, Untold Stories of the E.R., E.R., also some of the true story segments. I haven't watched any in awhile as I have not watched t.v. fr about 2 months now. Question was, If you could be good at or participate in any sport despite your dysautonomia, what would it be? Vey easy for me to answer, KARATE all the way, I was in karate from 8-12 until my EDS kickd into even higher gear and started to develope POTS symptoms, I was winning tournaments and was even given a spot on the team which is a very high honor, this is the one thing I brag about a little bit. Question was, Do you get excessive amounts of phlegm after eating? Actualy yes I do and I also struggle with swallowing and was hospitalized recently for something else that coexisted with this and the doctors were concerned and mentioned feeding tubes in my near future if I continue losing weight so rappisyl, I have lost 60 pounds in 6 months and am malnuritioned and vitamin deficient aand my potassium was extremely low upon admission. They were thing something to dowit my spinal fluid possiblyy as I walso came in with head pressure and pain in my head and neck and could not sit up. Question was, Do you have fibro or lyme? Okay so they are thinking I may have fibro, but it is hard to determine because I am in so much pain from EDS already, but I know other EDSERS with EDS and Fibro. I am unsure as to wether I wa tested for lyme, ut I am ike 90% sure I was. Oay I beleive that is all the questions for tonight. It is 3:48 here in Rhode Island U.S.A, for future reference Rhode Island is not in New York, it is a seperate state, not that I think you are dumb or anything, but it is a common mistake, had I not lived in New England I would probably have made the ame mistake. Now ypou can tell people you know that R.I. isn't in N.Y. Okay I am making no sense now, but anyway. So I have not been doing to well lately I had just gotten obver a kidney infection whcih I get often and one nearly killed me as a kid, spent two months with picc line and feeding tube and entibiotics to recover and stayed on long term antibiotics for like 3 years and then caeme off them and did well for awhile, until now that is. I stopped the antibiotics when I was done them and noww a few days later les then a week it feels like it is bback and on top of that I now have aa sinus infection. I have been having lots fot troube with POTS too, bt I didn find benydryl helped the flushing episodes so much, I wa trying it for the sinus inection, but helped me with flushing and I ate non stop today, mostly junk because that is what I have access to, but  anyway, I usually can only eat a tiny buit and then am sick today that was not the case at all! Also today me and Hannah, made a group on facebook for POTS, EDS, FIBRO, CFS, NCS and anyone else who has invisible illnesses within reason who wants to join so you all  are welcome ther and at my support and prayer group also and you don't need to be religious to join. I have been getting home OT and PT, also nursing and cna, seems to help, but insurance is about to run out on it and will have no safe way to shower whe  it does as I can't afford the adaptive shower stuff. I will have to figure something out there, I am going to have to see my cardio/ E.P. doc and also my orthopedist and probably my primary this week and also find a nephrologist for my kidney's. Welll I think that is about all, I am tired and could probably ramble on more, but I will spare you lol. I hope I did this right, sorry if it is way too long, let me know what you think in case I sub again. Also feel free to friend request me on facebook, Rhianne and Hannah are my friends on facebook also.

Tonya Marie York

Friday, October 14, 2011


Hey! Hey! Hey!

This past week has been a challenging one. The week before though, I would say was more challenging than this one so that's good that it's improving. I keep  feeling quite sick- so praying for that to pass soon :).
I went to my Primary's office this week because of my body pain that I've experienced for over a year? And it greatly lessened during the summer and started creeping back these past two weeks and actually my Doctor made a connection that it was around the time I went off of my SSRI (I can't remember if I've talked about the SSRI on here, but I know I have recently on my personal blog;, and he said that perhaps that's why it's coming back because SSRI's help individuals with body pain (did anyone else know that?- I was surprised!). He did the fibro exam on me and said I had all the points (I don't think he was overly thorough with it though), but he wants to rule out other things, he checked my thyroid, for inflammation and Lyme (through blood tests) and all came back negative. However, I forgot that I have been on an antibiotic in the last 60 days (actually last 30 days) and so I'm not sure how accurate the Lyme testing was. My dad said the Lymies (he has Lyme) say that you need to be off antibiotics for 60 days I think it was, and there's more accurate forms of testing out there that would be preferred... and I thought it was cute that he called them Lymies...Since POTSies call each other...well, POTSies. :).

I've been talking to people with Fibro who aren't diagnosed with POTS- in hopes of gaining an understanding of what Fibro could really be causing with my body if I do have it, and at this point- I really wouldn't be shocked if that's what the diagnosis came too. I think it would explain my bizarre burning headaches, and the hip and knee pain that I've had that the Rheumy didn't really have any answers for at the beginning of the year. Not to mention the bizarre episodes I've had of these odd sensations in my legs- anything from tingly tingly, to numb but in pain at the same time, etc. Makes it a challenge to walk sometimes because my legs just get so weak.

Anywho, on to the questions;

Cheyanne:  I now we've already talked, but I am glad your Doctor is investigating other issues and diagnosing ones that you know you have so that you guys can hopefully make some more ground with your treatment. I'm cheering you on girl and praying for all of my POTSies! :). Also, I wish you the best with the diet changes! I attempted the raw diet- but I don't always do the greatest with the raw veggies (I try to eat a lot of raw fruits and what vegetables I can). I hope you can make some amazing ground with your sickness through your diet. I try to be very strategic when I eat...Trying to get my servings of fruits, vegetables, grains and proteins... Even though it is still hard with where I am, it gets easier and easier over time! I recently found out too, that I am no longer anemic...Showed me the amazing impact our diet and nutrition really does have on our health!

Your questions; Do any of you all have eye issues that are POTS related? Before I answer, your experience at the eye Doctor sounds awful! :(, but yes, none with any diagnosis name though. At least I believe the issues to be from the POTS. I do have an astigmatism (my dad, sister, brother and I all do), and my brother is legally blind in one eye (so it's a bit hard to say), but I get lots of blurry vision and have trouble focusing on things (the focusing issues are probably the astigmatism though).
And; Do any of you get excessive amounts of phlegm immediately after eating? I do not have this specific problem... The only thing I can think of is...If you put your tongue on the tip of the roof of your mouth, and touch your forehead it moves that bone around enough that allows your sinuses to drain. Perhaps that motion is taking place while you eat? But mucous is also a lubricant for your GI system, so I'm not sure. Wish I had more answers for ya!

Michelle R: Nice post :). That is stinky that school is being killer on your body. Do you have any accomodations for you with your health? I sure hope so! Also, I hope you can definitely see someone to help with your pain and eventually see that Dysautonomia specialist. Sorry your parents won't take you to see him/her! Perhaps there's one closer?

Your question; Does anyone have problems with their tailbone? Not recently, but I have had horrible tailbone pain in the past, with no true answer of why. I hope you can get that figured out, too!

Michelle K: Maybe we can come up with nicknames for you and Michelle R based on your countries (Australia and U.S. for the readers who don't know), hehe. I thought it was SO amazingly awesome that you and Rhianne got to see each other! I was so excited to read that. However, I am sorry that you got to sick after the trip and had to be hospitalized (or was it just an ER visit?). The vomiting sounds awful! May I ask what all is happening with you that is serious? We're a big family, so we worry haha. You go girl for letting this give you more determination to do something fun and go on that cruise! Whoohoo! Or, Oi Oi! As you and Rhianne told me was a chant :).
Anddddddddd..I'm looking forward to checking out your blog!

Your question; Do you have an interest in any medical shows, if so any in particular? I, suprisingly don't. I used to like untold stories of the ER- but it makes me think about my own health too much haha. Really, if I watch a medical show- it's something like "A Baby Story."

Rhianne: I am sorry you are doing horrible, but I have a question for you. Is it possible you could have a bizorre? Well, that's what we call it haha, it's when food matter collects in your stomach and doesn't digest. My dad seems to get them periodically, and he told me that it makes him cough up food sometimes (I didn't know this happened to him). Of course, you may have had all of that checked out by now! But I wanted to mention it. My dad likes to jokingly sing, "My Bizorre's back and there's gonna be trouble," I think it's his little remake of a real song, but I don't know which one haha.

Logan: I really hope you get to feeling better with your GI! We talked the other day so I'm not really sure what to write in here that we didn't already say haha. I know your medicine made you feel all loopy even though you didn't take a full dose, so I really hope you guys can get that figured out so that you can still get the benefit you are looking for (Rather from that drug or another treatment!).

Your question; If you could be good at or participate in any sport despite your Dysautonomia, what would it be? Volleyball all the way! It was a passion of mine before I got sick. I still enjoy watching it, though :). I think it's so cool that you did horse back riding and you would rock water sports!

Sorry this is so long guys, get excited for Michelle R next week and then I'll be back the next week :).

Almost forgot! My question: Does anyone have Fibromyalgia (I know Cheyanne does <3), or Lyme, and if so, any advice in what to do to for testing or ruling other things out, etc.?

Wednesday, October 12, 2011

Trip to the health foods store!

On the way back from the GI doctor my mom and I stopped by Whole Foods. Going in there was overwhelming!! Ha! There was so much food in there. What I found neat was that I bought a raw, gluten and dairy free, apple cinnamon bar. I usually eat the kashi kind that isn't any of those things and they make me sick every single time. Well, the bar I got today didn't!!  I am wondering what in the other one makes me so sick. I am almost considering going on a raw diet because of how well it went.

When i went to see the autonomic specialists in Ohio they officially diagnosed my with fibromyalgia, migraines, and joint hyper mobility. They told me that I need to go to physical therapy. They put my on Mestinon and Periactin. The Periactin made me extremely dizzy. Of course, if there is a side effect I am going to get it. I'm excited for physical therapy though. :)

Michelle's Question: Does anyone have problems with their tailbone?
Yes, mine hurts quite frequently.

Michelle K's Question: Do you ahve any interest in medical TV shows?
Not really, I don't watch TV much because my light sensitivity tends to act up while watching tv and movies.

 Logan's Question: If you could participate at any sport despite your dysautonomia, what would it be?
Softball. I used to play before I got all my heart symptoms. I would have to run off the field to go to the bathroom when I was having diarrhea every day. It got to the point where I would starve myself all day beforehand so I wouldn't have to run off the field during the game. I wanted to get a scholarship from it.

My Question: Do any of you get excessive amounts of phlegm immediately after eating?
I keep getting that and when it happens I get this lump in my throat! It is so irritating so I keep swallowing an abnormal amount of times. Then, I get a pressure in my throat and it feels like my throat is "weak." It goes away about 30 minutes after eating something. It is the craziest thing.

I hope y'all have a good week!

God bless,

Tuesday, October 11, 2011

Thanks Guys!

It was awesome to here encouraging words from you guys!  And thanks so much for the logei award Rhianne!

My week has been pretty horrible, GI has been worse than usual, having diarrhea daily and much more pain and nausea than normal. Later this week though we are going to try a medicine that might help with sensitivity.  There is also a big a chance I will be allergic to it, but its worth a shot right??? I'm so excited to try it, I really hope it helps!!

I'm really tired, so onto questions.

Rhianne – If you could spend a day with anyone in History who would It be? I'm not sure.

 Hannah, you asked about D-Ribose.  My mom wanted me to try it, but I never did, I can't offer any advice.. sorry.  : /

Michelle R – does anyone have problems with their tailbone?

I have a lot of joint pain, including in like my tail bone area and my back sometimes. I am determined to try to sleep on a pilates mat on the floor for a while to see if it helps. My back usually feels better after sleeping flat on my back on a more firm surface, but I tried that last night and I couldn't sleep at all. Its so hard to change sleeping habits!
Cheyanne .....eye problems? Did i answer this already? Brain fog O.o Yes I have eye problems, they can happen randomly, but most of the time they happen when I have sensory overload or get headaches and migraines.

Michelle k –  Are you interested in medical dramas?  Yes, I love Grey's Anatomy and ER, but of course like most shows they have their problems with sleeping around and inappropriate content.

My question - If you could be good at or participate in any sport despite your Dysautonomia, what would it be??  Its a tough one for me, I used to horseback ride along time ago, cross country jumping was my favorite:

I also love the water, if I had any chance to swim I took it. You could not keep me out of a pool! I really miss swimming.
Jesus loves you! - Till next week.

Friday, October 7, 2011

It's Michelle again :3

Hey guise it's Michelle (R) posting this week :)

Soooo school has been a killer on my body, and I've been having new symptoms every day almost, mostly pain. I recently went to my neurologist and she thinks I should see a integrative pain therapist and she also recommended that I see a Dysautonomia specialist, in Dallas. And of course my parents don't want to take me to Dallas to see this specialist. This completely ticks me off. :(

But whatever, here's me recently

I look cute
So onto questions yeah?
My Question:
Does anyone have problems with their tailbone?
Rhianne's Question: If you could spend the day with someone throughout history who would it be?
Eugene B. Sledge. He was an amazing person who took on the evils of War at a very young age and I would love to learn more about his struggles with PTSD and probably fall in love with him. He was quite dapper :3 <3
Cheyanne's: Do any of you all have eye issues that are POTS related?
I can't say I do. I have bad eyesight already and I just assume that anything eye related is fairly normal.
Hannah's Question: Has anyone tried D-ribose? What's your opinion on if you have? 
I can't say that I have, Sorry!

Hope to hear from y'all soon. <3
Take care!
til the end,

Wednesday, October 5, 2011

I leave for Ohio in the morning!

I have to get up at 1:30 in the morning to leave for the airport. I don't know how I am going to do with little or no sleep. I really wish my heart symptoms would act up just while I am at the doctor lol. Every time I see them my heart is at its best. The past few days my heart has been normal for a few hours out of the day. I am so thankful for that. My heart symptoms have never really been too bad, but all the other symptoms that come along with the POTS are. It is kind of strange. 

Yesterday I went to the eye doctor because I have been having problems reading. We told the doctor to not dilate my eyes because I have bad light sensitivity and also my pupils do weird things. Sometimes I have one that is really small and the other is huge. Well anyways the doctor got unbelievably mad over something silly like that and started yelling at us. When my mom made the appointment she asked the lady if I had the option of not getting my eyes dilated and she said just to tell the doctor. We told him that and he yelled, "those people are nothing. They just make the appointments!." He said a lot more, but to make a long story short we had to leave and I never got my eyes checked. My mom is making me an appointment somewhere else. 

Rhianne's Question: If you could spend the day with someone throughout history who would it be?
That is a hard question. Hm...Jesus of course, but I can't really think of anyone more in later history. Maybe the founding fathers of the US so I can understand where my country originated from a little better. oh and by the way, thank you for the award. :) 

Hannah's Question: Has anyone tried D-ribose? What's your opinion on if you have? 
No, I haven't.
I hope Logan feels better! 

My Question: Do any of you all have eye issues that are POTS related? 

God bless
-Cheyanne :)

Tuesday, October 4, 2011

Twice in One Week!

Hey guys, it's Hannah again! Logan asked me to post for her.
I don't have a whole lot to fill you guys in on since friday, but; I do know a small update on Logan. I know that she's having bad stomach pains, but she got bigger tubes! If you want to read her most recent update, click here.

Last night, I had a yucky POTS episode. I tried to sleep for like an hour and a half and I do believe I dosed off a couple of times, but I finally decided to turn my TV and my arms and legs went numb but at the same time were in pain. My respitory felt funny and it felt like it took so much energy to even move. I also had some minor tremors. I had to call and get my poor mom up to bring me water. I was afraid to go to sleep, too because I felt like my body was just going to suddenly become paralyzed (I'm sure you guys know that feeling), but I'm a little bit better today.

Erin, I am glad you found a possible source for your fatigue, but I do hope that does not mean crazy changes with medications, that is never fun. Also, I prayed and will pray about the lab results <3 , I am sure everything will be okay, but I certainly understand the anxiousness and anticipation that comes with waiting on test results <3.

Rhianne,  The Logei (funny, because we call Logan, Logei!) award was so incredibly sweet, thank you so much my amazing friend. You would get the "Amazing sense of humor" one, because you can always make anybody smile. You always seem to go out of your way to make people smile :). I also love the one you gave miss Logei bear! That is certainly true and fitting for her, she certainly does hang on and is definitely an inspiration. Love ya Logan!
You also keep on enjoying your holidays :).

Your question- If you could spend a day with someone throughout history who would it be? Probably Ben Franklin ('Ol Benny!). We did English class projects on him when I was in the 11th? grade, or maybe it was this past year and I just forgot, but I'm curious as to what his philosphy and beliefs really were, I'd love to sit down and have a chat with him about it.

My question: Has anyone tried D-ribose? What's your opinion on if you have?

Supposedly it's helped some POTSies get up out of bed, and they use it in  CFS and Fibro patients, also in heart disease patients with their exercise intolerance, however it can cause low blood sugar and there is not enough information on it to know if it is safe for long-term use. I was contemplating rather or not I wanted to try it and I wanted to see what my lovely Dysautonomias thought.

Alright ladies, have a wonderful rest of the week- and I am sure Logei will be back next Tuesday.

Toodles! :).


Sunday, October 2, 2011

The Logeis

So I am hosting the Logeis today. They are called the Logeis because in Australia there is an award ceremony called the Logies, (like our golden globes).

I got bored so I made you all awards on Picnik.

The award for the person who has way to much brains  for Miranda.

The one who will always help you out. This one for Hannah

The one who just a tad crazy and a lot of fun. For Francessca

The one for someone who "keeps calm and carries on" in hard times. For Logan.

For Erin who seems to be full of life and is an amazing blogger 

For Cheyanne for her pretty smile and attitude
How can I forget our subs? 
So how am I? I am good. I am on school holidays now which is GREAT! :) I am so happy about that. I went to Sydney for the first few days and had a balance appt which went great and I know that I overbalance now and an appt with my general doctors. 

I also went to a sleepover and had fun with my friends. Hung out with my cousin James a lot too but he went home today. 

Not much else to say really. I think I will just ask my question: 

If you could spend a day with someone throughout history who whould it be? 
I am going Shakespeare! :)

Love all, Rhianne 

Beta Blockers = Culprit

Hiii. Hello. Ciao. Bonjour! Hola!
As many of you know, I have posted about being increasingly tired over the past month or so. I also have been gaining a considerable amount of weight. The culprit? Atenolol. Now, this is just my theory - I have not asked nor talked to a physician, so please take this advice with a grain of salt.

On the back of the bottle, my beta blocker clearly states that it can increase drowsiness and I'm thinking it's finally doing just that. I have been on them for well over a year now, but for some reason it's really starting to effect me. I am now taking them every other day and notice a slight difference. I hope this may help my weight as well. I just want to fit into my regular clothes comfortably again :)

As for the month of October, I am waiting on my lab results to come back regarding my EDS (type IV -vascular type) results to come back. The anticipation is the worst of all - I still understand the chances are very slim, but you still have that "what if" feeling. It's been one month and the results take 1-2months to come in, so we'll see!

I have been noticing that I am experiencing more problems with my EDS than with POTS. My joints pop every multiple times throughout the day and I have to be very conscious with any big movement I make :/ I need to go to the dentist really bad but everytime I go, I have an awful experience. If any of you don't know (which now makes sense) people with EDS do not heal properly and have excessive problems with the teeth and gums. When I need to get a cavity filled, I have to be careful which medicine I use (because of POTS and the numbing medicine has adrenalin in it) but it also takes way longer than usual as my mouth does not get numb easily - it takes a certain medicine and a lot of waiting and injections...blah

I get sores in my mouth quite frequently and foods can easily trigger sores as well, I don't quite understand that! Stupid thin, thin skin!

Anyways, sorry for the vent session.
I don't think there were any questions & I really don't have any at this moment.

You will be receiving an email tonight if you signed up to be on the mailing exchange list! Be on the look out and thank you to everyone who wanted to participate!!**  
If you still would like to add your address to participate, please just email me at ambivalentbliss(at)gmail(dot)com and I will get you the info!

Blessing to you all,
♥ Erin

Saturday, October 1, 2011

Hannah is Here! Haha.

Okay, I FINALLY remembered to post- but due to my crazy forgetfulness and possible increase in busyness coming up, me and Michelle are going to take turns posting on Fridays. One Friday, I'll post- the next she will- the next I will, and so on. I hope you guys enjoy that :).

The answers and comments I have for you guys are all over the place, please excuse that. I am so fatigued I can't stand it, so I just glanced through the other posts. 

Miranda, I'm sorry you've been so busy, but a HUGE congratulations to you on your nomination into the NHS. That's a big accomplishment for anyone, but, I think it's all the more awesome that you accomplished that with suffering from a debilitating chronic illness! I'm also excited for you that you get to see Dr.Grubb! Whoohoo! :)

Cheyanne, I will pray for you with flying hun :) Don't sweat it! I'm sure it'll be fine. I also hope you can make some progress with your Doctor!  Also, I know you had a question about if we took iron supplements and if they gave us stomach problems- and yes I have. When I first got diagnosed I was put on them- right now I'm not really anemic, or so bad that the Doctors let me in on what showed up on my blood work. The pills did mess with my stomach. Heart burn and nausea were the issue! If you do take them, never take them with something acidic. Like foods with tomatoes, or citrus or carbonated drinks. Also, if you want to drop the pills, you can try blackstrap molasses. I was taking about two teaspoons to a huge tablespoon. It's suppose to help with iron-anemia. Tastes nasty but it doesn't keep bugging your stomach. However, depending on how bad you are- you may NEED the pills, so just be cautious :).

Erin: I'm sorry to hear about your exhaustion, I'm there myself too. The only things I have really found to help at least a little is keeping up on my protein, eating tons of fresh fruits and vegetables, and making sure I take my B vitamins. As far as I know I am not deficient in B-12, but I have heard of that with other POTSies. I hope you can get it all worked out with what  way you need to receive the vitamin!

Michelle: Thanks SO much for posting for me, you're amazing :). Your question was, what are our top three symptoms that really affect our life (I don't think that was your exact words!), and...Man, that's a hard one. Probably fatigue, headaches, and... I think GI issues is a big one.

Rhianne: You wanted some tips for summer, but first YAY that it's summer you're way! :) Tips I have would be; Get a cooling vest- this was a major thing for me this summer, I was able to do SO much more with it. The second thing is, carry an umbrella to block out the sun- I didn't think of this til near the end of summer. Make sure you always have sunglasses for light sensitivity, and I carried around a two liter bottle of water a lot. I also don't like to wear sneakers when it's hot because they increase my blood pooling. Keep snacking as much as possible too, that you can even with your dysphagia. Even if you gotta juice a bunch of fruits/veggies, etc. ;-). Oh and you can carry around on of those battery powered fans that hang from your neck- I know they have both the little ones and the ones with fans attached to spray bottles!

Sorry if I missed anyone!
On to my week...

This week was CRAZY. I had a urology appointment on Tuesday (they want me to see another specialist in another expertise and come back to them), Wednesday I had a meeting with an organization that helps people with disabilities get employment. Here's where the busyness comes into play- they will help me pay my way through college if I'm eligible to get a degree in medical coding and reimbursement (you can work that from home), except they will only allow two part-time semesters, the rest have to be full time- which scares me. I'm only taking one class right now and I'm even struggling with just that. But, I know it'll all work out, and if I can't do it, well, at least I tried hey? :). So, that's what I'm shooting for right now- a good try. If I can do it then WHOOHOO! If I can't then...WHOOHOO for trying :).

I've also been having symptom changes between the weather and medicine changes. My heart rate is higher, my insomnia and fatigue is greater, my varying BP's are more often, my GI symptoms are getting worse than they were during the summer, I'm having these disgusting headaches, and my vision has been weird. So I'm a bit overwhelmed with the change from doing so well during the summer, to all of the sudden feeling like I'm on a downward slope physically, however I am still SO much better than this time last year. This time last year I couldn't walk up the stairs- praise be to God for the progress!

Alright guys, get excited for Michelle next Friday, then I'll be back the one after that ;-).