I don't know if any of you watch it, but it is the highlight of my week. :)
My bladder has been a little better. My pediatrician just called a few minutes ago. She thinks that mast cells may be contributing to my problem with that. Thankfully, I am actually able to go to the bathroom now.
I've been sick with a virus for over a week. Plus, I have had FCAT testing Monday and Tuesday. That was pretty stressful. On the 3rd I have my 3 hour geometry end of course test and on the 4th I have a college entrance test. Hopefully I can pass!
On Friday I have my MRI. We are suspecting that my hips are not positioned in the socket correctly because everything is so loose that it doesn't want to hold it in. That could be why my knees and feet are turning in. I think I'd rather it be arthritis doing all of this. You can treat that. The only way to treat the other thing is surgery. We don't necessarily want that because it could set my dysautonomia off, like my last surgery did.
Questions!
Erin: I am so sorry to hear that you may need surgery! I'll be praying you won't need it. :( I just feel that there is a lot of other contributing factors for must of us than just POTS. Does anyone else agree or has anyone had similar experiences? I definitely agree!
Michelle: Your dress is beautiful! Have fun at prom. :) Are any of y'all going to prom? I was going to because my boyfriend is a senior, but I couldn't afford a dress right now. And he didn't even care to go. I guess I'll have to wait until I'm a junior or senior.
Logan: The dandelions are so pretty! What do you do to avoid getting sick in the car? Most of the time I am pretty good in cars. Car rides are my favorite! If I try to read, look out the window for awhile, etc. then I get a big headache and nauseous. So usually I put my headphones on and listen to music or talk and not read anything or look at my phone a lot.
Hannah: That stinks that you aren't doing well. I am sorry. :( What meds/supplements do you find helps with headaches? I take Excedrin without the aspirin in it. That does help depending on what is causing the headache. If I get a sensitivity headache, then that will not work. I usually don't take it being that most of my headaches are from light sensitivity.
God bless. :)
-Cheyanne
Wednesday, April 18, 2012
Whoopsies!
Hey ladies, Hannah here. I was filling in for Michelle this past Friday (at least I think it was her week LOL) And typed most of my rough draft and forgot to post! So, Cheyanne kindly is letting me post this on her day... Thanks Cheyanne (Enjoy her post today!)! (Also, I will not be answering any questions from posts after Friday, I will do that when it's my next time to post:).
I have not been up to much here this week, I have been feeling quite bad. But I have been having a yard sale and second hand shop obsession here lately, and am enjoying riding around to yard sales. It's a nice way to go out with a purpose and not have to go into a store, plus I have been trying to be sweatshop free and as a result, it seems most things I get that is possible to get second hand, I do. Most of my clothes and some other miscellaneous things are second hand. I am finding it exciting as well to be learning to "up-cycle" things and use old things to make new things. I am finding it exciting for not only the reason of being sweatshop free and saving money, but because it gives me something to do. And it's fun learning to be resourceful, it causes you to be creative and try and picture old things as new things.
I found a bin at a yard sale full of 10 cent kid's shirts, and I got a load of them and made a mini rag rug (but it got ruined when I washed it- haha). I also made a loom for no cost to me (we had a piece of wood and I used my dad's hammer and nails!) and that'll come in handy for making rugs, and scarves and possibly blankets.
I am also trying to work on my sewing skills. I am just so thrilled to be learning these skills (please note I am not boasting- I am definitely a novice LOL). I was talking to my aunt about my current situation of being too sick to get a degree- and then we were talking about working from home (I have explored this), and I told her right now, I am working on some skills since I can't work. Maybe I can make at least some extra money off of some things I make and if not, just save money for myself (really for my parents who are graciously taking care of my needs and furthermore my wants! I am blessed!) by using "trash" to make something usable :). One good thing about having Dysautonomia- is it causes us to think outside the box! Anyway, enough of my verbal explosion about my excitement in re-using things haha.
Question time!
Erin: I am sorry to hear about you needing surgery! You did ask the question, Has anyone had sinus surgery? And I have not... But my Dad had some sort of surgery with his nose, I believe it was sinus surgery sometime ago... I don't think he had Lyme at this point but I can't remember... The only complaint I really know from him now is that "ever since I had that surgery I feel like I have something in my nose!" Haha, meaning, what you need to use a tissue for (I tried to say that as ladylike as possible!). Your "official" question was, Does anyone experience dermographia or mast cell activation disorder symptoms? I do believe when I was younger I experienced symptoms at least similar to Dermographia. However now, other than random itchy times, when me itching the skin causes it to become red, irritated and painful, I don't really think I do. As far as the MCAD, I notice a lot of the symptoms are just like those of POTS- However, symptoms that may be unique to it; I do experience allergies, flushing, random itchiness, random cough, etc. but I cannot say that it is MCAD. I wish I had more precise answers for you! <3.
Rhianne: I saw your video! Good job falling off the chair- haha. Anywho, your "question" was to finish the statement: You know you have POTS when...
You know you have POTS/Dysautonomia when... You spend your birthday money on vitamins
You know you have POTS/Dysautonomia when... Going to the grocery store without a wheelchair is your idea of adventurous
Cheyanne: I know you are having difficulty with urination. If you haven't already, you may want to check into a urologist. I had issues with urination/ recurrent UTI's until I had a cystoscopy done. <3.
Your questions... If you get tremors or jerks, what have you noticed set them off? Sugar, like if I drink a sugary drink like sweet tea or soda really fast, I can get shaky... Sounds, usually random unexpected ones, sometimes activity, and other times they are just random. Sometimes I wake up and realize I have sweat a lot and I'll have tremors and just sleep them off (lol), so I guess also a loss of fluid. Do you know what caused your Dysautonomia? I do not, I thought for a while since I wasn't hypermobile, that POTS/Dysautonomia was my primary condition (as oppose to secondary with EDS, etc), however, I am now learning there can be other causes besides that, puberty, and viruses or other set off's similar to viruses, so that is something I want to investigate. There are some things I am thinking could be links, but I'm still trying to play investigator and put the links together (and of course, I need to be thinking of a Doc who can help me).
Logan: What do you guys do to avoid getting sick in the car? Whether from motion sickness, or sensory overload? For me, short rides are usually okay, unless they are on a mountain or a hilly area. What I do on those roads is I try to stay engaged in a conversation to totally distract myself from it. I find eating (believe it or not) also helps to. I've never been one to throw up from motion sickness, just get the gross headaches and upset tummy. On long rides I cover myself in a blanket, so I think the eye mask idea is great! I also found (until I realized I couldn't take it because of long QT) that Dramamine did help the little bit I tried it.
I hope making it to PT appointments becomes easier for you :) Hang in there with your feeds! <3
Christine: Welcome aboard :) It's nice that we are having a variety of Dysautonomias to learn from each other, other than just POTS. I know Michelle R, I think has an unknown form of Dysautonomia. Your question, Do any of you suffer from sleep deprivation and what do you do to help it? Yes! And that's a good question haha. Right now I am in the process of dealing with a sleep Doctor to try and figure that one out. When melatonin is an option (when my BP is at a number I feel comfortable taking it with- or I just feel physically like it should be fine) that helps me to at least fall asleep. Otherwise, for energy, the only thing I know of is vitamins (if you want to know what all I aim to take- let me know!)- sometimes exercise (that's a balancing act as sometimes that can make it worse) and just nutritious food.
My question... What over the counter medication, or herbal/vitamin/mineral supplements do you guys find that help with headaches, and/or allergies. (Note: Your headaches don't have to be related to allergies, I know a lot of us, myself included, have headaches all the time!)
Alright peoples! Hopefully I don't make the same mistake next time haha,
Until Next Time...
Hannah <3
I have not been up to much here this week, I have been feeling quite bad. But I have been having a yard sale and second hand shop obsession here lately, and am enjoying riding around to yard sales. It's a nice way to go out with a purpose and not have to go into a store, plus I have been trying to be sweatshop free and as a result, it seems most things I get that is possible to get second hand, I do. Most of my clothes and some other miscellaneous things are second hand. I am finding it exciting as well to be learning to "up-cycle" things and use old things to make new things. I am finding it exciting for not only the reason of being sweatshop free and saving money, but because it gives me something to do. And it's fun learning to be resourceful, it causes you to be creative and try and picture old things as new things.
I found a bin at a yard sale full of 10 cent kid's shirts, and I got a load of them and made a mini rag rug (but it got ruined when I washed it- haha). I also made a loom for no cost to me (we had a piece of wood and I used my dad's hammer and nails!) and that'll come in handy for making rugs, and scarves and possibly blankets.
I am also trying to work on my sewing skills. I am just so thrilled to be learning these skills (please note I am not boasting- I am definitely a novice LOL). I was talking to my aunt about my current situation of being too sick to get a degree- and then we were talking about working from home (I have explored this), and I told her right now, I am working on some skills since I can't work. Maybe I can make at least some extra money off of some things I make and if not, just save money for myself (really for my parents who are graciously taking care of my needs and furthermore my wants! I am blessed!) by using "trash" to make something usable :). One good thing about having Dysautonomia- is it causes us to think outside the box! Anyway, enough of my verbal explosion about my excitement in re-using things haha.
Question time!
Erin: I am sorry to hear about you needing surgery! You did ask the question, Has anyone had sinus surgery? And I have not... But my Dad had some sort of surgery with his nose, I believe it was sinus surgery sometime ago... I don't think he had Lyme at this point but I can't remember... The only complaint I really know from him now is that "ever since I had that surgery I feel like I have something in my nose!" Haha, meaning, what you need to use a tissue for (I tried to say that as ladylike as possible!). Your "official" question was, Does anyone experience dermographia or mast cell activation disorder symptoms? I do believe when I was younger I experienced symptoms at least similar to Dermographia. However now, other than random itchy times, when me itching the skin causes it to become red, irritated and painful, I don't really think I do. As far as the MCAD, I notice a lot of the symptoms are just like those of POTS- However, symptoms that may be unique to it; I do experience allergies, flushing, random itchiness, random cough, etc. but I cannot say that it is MCAD. I wish I had more precise answers for you! <3.
Rhianne: I saw your video! Good job falling off the chair- haha. Anywho, your "question" was to finish the statement: You know you have POTS when...
You know you have POTS/Dysautonomia when... You spend your birthday money on vitamins
You know you have POTS/Dysautonomia when... Going to the grocery store without a wheelchair is your idea of adventurous
Cheyanne: I know you are having difficulty with urination. If you haven't already, you may want to check into a urologist. I had issues with urination/ recurrent UTI's until I had a cystoscopy done. <3.
Your questions... If you get tremors or jerks, what have you noticed set them off? Sugar, like if I drink a sugary drink like sweet tea or soda really fast, I can get shaky... Sounds, usually random unexpected ones, sometimes activity, and other times they are just random. Sometimes I wake up and realize I have sweat a lot and I'll have tremors and just sleep them off (lol), so I guess also a loss of fluid. Do you know what caused your Dysautonomia? I do not, I thought for a while since I wasn't hypermobile, that POTS/Dysautonomia was my primary condition (as oppose to secondary with EDS, etc), however, I am now learning there can be other causes besides that, puberty, and viruses or other set off's similar to viruses, so that is something I want to investigate. There are some things I am thinking could be links, but I'm still trying to play investigator and put the links together (and of course, I need to be thinking of a Doc who can help me).
Logan: What do you guys do to avoid getting sick in the car? Whether from motion sickness, or sensory overload? For me, short rides are usually okay, unless they are on a mountain or a hilly area. What I do on those roads is I try to stay engaged in a conversation to totally distract myself from it. I find eating (believe it or not) also helps to. I've never been one to throw up from motion sickness, just get the gross headaches and upset tummy. On long rides I cover myself in a blanket, so I think the eye mask idea is great! I also found (until I realized I couldn't take it because of long QT) that Dramamine did help the little bit I tried it.
I hope making it to PT appointments becomes easier for you :) Hang in there with your feeds! <3
Christine: Welcome aboard :) It's nice that we are having a variety of Dysautonomias to learn from each other, other than just POTS. I know Michelle R, I think has an unknown form of Dysautonomia. Your question, Do any of you suffer from sleep deprivation and what do you do to help it? Yes! And that's a good question haha. Right now I am in the process of dealing with a sleep Doctor to try and figure that one out. When melatonin is an option (when my BP is at a number I feel comfortable taking it with- or I just feel physically like it should be fine) that helps me to at least fall asleep. Otherwise, for energy, the only thing I know of is vitamins (if you want to know what all I aim to take- let me know!)- sometimes exercise (that's a balancing act as sometimes that can make it worse) and just nutritious food.
My question... What over the counter medication, or herbal/vitamin/mineral supplements do you guys find that help with headaches, and/or allergies. (Note: Your headaches don't have to be related to allergies, I know a lot of us, myself included, have headaches all the time!)
Alright peoples! Hopefully I don't make the same mistake next time haha,
Until Next Time...
Hannah <3
Tuesday, April 17, 2012
Danelions
I'm gonna keep this short : / I had some bad sensory overload today and even after resting for a few hours I'm still not feeling good. I wanted to share these pictures with you guys though, for the first time since I was little I picked a bouquet of dandelions last week!
Are any of y'all going to prom? - Michelle
nope, I'm taking classes online instead of attending school/ But have fun for me!!!!
P.S. LOVE YOUR DRESS!
Do you know what caused your Dysautonomia? -Cheyanne
No.
Does anyone suffer from sleep deprivation and what do you do to help it? - Christine
ALL the time, I really haven't found much to be helpful. Sorry.
If you get tremors or jerks, what have you noticed sets them off? Cheyanne
Sensory overload primarily, but they can happen just randomly too.
P.S. I know how you feel with the motility problems. When I have them my belly looks just like that!
My question - What do you do to avoid getting sick in the car? I wear a blindfold sometimes, and I often wear ear plugs.
- Logan
- Logan
Monday, April 16, 2012
High anxiety.
Hey guys it's Michelle subbing for Rhianne.
I want to make this very short because I'm feeling pretty crappy.
Long story short, my hockey team is losing and it's making me feel very crummy and sad. It's tearing me apart really.
I'm having some bad headaches and such, but I'm seeing my cardiologist next week to tell him about my red legs and painful arms.
Prom is coming up also and I have anxiety about feeling irrelevant.
but here's my dress :)
Sorry I'm not being very fun and being awfully short, but today just isn't going well for me. I hope it's very good for y'all.
Quick question: Are any of y'all going to prom?
Wish you all well <3
love,
Michelle
I want to make this very short because I'm feeling pretty crappy.
Long story short, my hockey team is losing and it's making me feel very crummy and sad. It's tearing me apart really.
I'm having some bad headaches and such, but I'm seeing my cardiologist next week to tell him about my red legs and painful arms.
Prom is coming up also and I have anxiety about feeling irrelevant.
but here's my dress :)
Sorry I'm not being very fun and being awfully short, but today just isn't going well for me. I hope it's very good for y'all.
Quick question: Are any of y'all going to prom?
Wish you all well <3
love,
Michelle
Sunday, April 15, 2012
..and it just keeps on coming
These past two weeks have been quite interesting. Many doctors appointments and tests have been done and I feel as though I have been referred to specialist after specialist and gone through multiple tests recently.
If some of you don't know, POTS is actually a conglomeration of "symptoms" that make up a syndrome. For me, my POTS symptoms are caused by EDS. While I am okay a diagnoses of Postural Orthostatic Tachycardia, I knew that I still had something else going on...something still just wasn't right.
Fatigue, severe exercise intolerance, chest pain, difficulty breathing, just to name a few.
After a chest ct (that I have had multiple times before), sinus ct, and a stress test, I have many more things to now deal with...does it ever end?
My stress test came back abnormal. It shows that my heart is not getting enough oxygen and my waves are abnormal. Why this is happening in someone my age? They are stumped. I see a specialist in cardiology on Thursday. Maybe this has something to do with my bicuspid aortic valve, but I doubt it. My past echos show that congenital heart problem is doing fine. I'm a little nervous about that one, but I'm keeping a positive attitude.
Other firm diagnoses from the stress test that have been thrown around...
airway collapses.exercise induced asthma.vocal cord dysfunction.possible more laryngomalacia that I may need a third surgery.
joy.
Next, I had a sinus CT to see if my anatomy is abnormal.
Of course it is! I have an 100% blockage in my left nasal cavity from a bone spur.
That on top of my 95% blockage of a deviated septum qualifies me for surgery
(my doctor doesn't recommend surgery if you just have a deviated septum)
Last. My chest CT :/
The doctor literally called and said "well, it isn't horrible news"
After a phone conversation regarding my results, I learned that the main vessel in my body (Vena-Cava) is on the opposite side of my body. Mine if on the left and it's supposed to be on the right.
OKAY?
Then, my artery that feeds the spinal column isn't where it should be.
OKAY? SO? ...the only words that could come out of my mouth...
She didn't have a lot of words for me and this will be addressed with the cardiologist on thursday as well. How is that for news! I just keep asking myself how this was NEVER diagnosed before. I have had quite a few chest CT's -- really?
Anyways.
I just feel that there is a lot of other contributing factors for most of us than just POTS.
Does anyone agree or has anyone had similiar experiences?
I'm too tired for questions, I promise I will answer them next week :)
xoxo.
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