Wednesday, June 27, 2012

Hey guess who?

I'm late again, : 3 sorry about that. Christine also apologizes for not being on the ball with posting on alternate Tuesdays! She says she is having bad memory problems right now, and what with how hectic her life has been recently i think we should be understanding. (I'm sure she will explain somewhat when she posts.)
Anyway, my life has been a little hectic too i confess. We are in the process of cleaning up the house, packing, moving... and of course my dad is doing some renovations in the new house to make it more suitable for my grandparents and me.
I am trying my best to get a passing grade on my online history course by the deadline which I believe is the end of this month YIKES.
Also I'm trying to find ways to get enough calories and nutrition when i either have to thin out my feeds or just do clear liquid feeds altogether. (And in the process I'm still trying to stay as natural as possible with what i put in my tube, the healthier a diet I'm on, the better my symptoms are.. that that's no easy task right now.)

Hopefully in a few weeks things will be less chaotic : ). Now i have a confession to make with you guys, i have been throwing up small amounts of blood. And when i say small, i mean SMALL.     teeny     tiny.      Like just a few drops usually at a time. No biggie. At first i thought it was probably just blood from irritation in my nose that i had swallowed without knowing it and was puking it back up.
 (That was gross wasn't it? Sorry)... But I actually haven't been having any nose bleeding lately. My nose bleeds from my tube have stopped! : ) So if its coming from anywhere, i suspect its probably bleeding from my throat, but my doctor also suggested that when you throw up you can sometimes burst little blood vessels or capillaries and that's where the blood could be coming from. Altogether he really didn't seem concerned at all, which surprised me!  My Gi doctor has been really pushing for me to have the G-tube surgery for a while, but i have been saying no.  So I expected that at the first sign of more irritation he would be quick to want my NG tube out. But I have been praying that if its time for me to have the G-tube surgery God would cause that to happen, but if not, then God would close the door and prevent it from happening. So, Its all in God's hands as far as I'm concerned. : )

I had an interesting experience at the new house last week. I went over just to look around, bring over some junk, and help clean up a little. It was very hot in the new house because we didn't have the air conditioning in yet, and I started to get sick from heat (and noise and exhaustion). So I was wearing this big baggy black T-shirt.... (Which might actually be my mothers and I should probably give it back lol.) And I took the T-shirt and I got it all wet in the sink and put it back on, and it worked! Kind of like a cooling vest, only much more gentle (for those who are sensitive to both heat AND cold like me and can't wear cooling vests.) So for those who don't have air conditioners, and either can't use or don't have a cooling vest... try taking a dark colored T-shirt or tank top (that won't be see through when its wet), get it wet, and put it back on : ) It works wonderfully!

Other than that, I had two odd situations i wanted to share with you guys.
The first one is i got some sandals (Adidas brand).

 I have wanted a pair like these since 9th grade, I love how they look, and i love how you can wear them in the winter if you wear them with thick fuzzy socks. Those bumpy things are supposed to massage your feet when you walk, but because I'm so sensitive to touch I can't walk with bare feet in them for more than a minute or two. I kid you not, MY SHOES MAKE ME SICK. I get a headache, I get nauseous, and then before i get any worse I take them right off. So In order to wear them i have to wear them with socks... ALWAYS. And they actually do feel good with socks on, the little bumpy things do massage your feet, but its too much barefoot! I need to wear them with socks to tone the feeling down!

Also, yesterday I had an embarrassing ordeal where i had a fit of muscle jerks (and some tremors too) for over an hour. Most of the jerks were in my legs which means i couldn't get up and walk...  Without going into alot of detail, basically my grandmother had to wait over an hour for me because I couldn't get up.  Also, I wanted to get up so that I could ask someone a question... but i couldn't.
It worked out because the person ended up coming over to me. But it was sort of an awkward situation.. especially because i was having issues talking, and because I was not comfortable making eye contact when flopping around uncontrollably like a fish.

So this is my question for the week, does anyone else avoid eye contact when having muscle jerks?

 Rhianne: How much independence do you have? Not much.. been home bound for 3 years. But in a way honestly i think its good for me. Being sick, home bound, dependent on others... but most of all being dependent on God i think is good for me.... The more i come to realize how pathetic i am, the more i come to realize how awesome the King of Kings is.

Michelle K: I am on Florinef and a beta blocker i can't remember the name of.. nor can i remember the dosages lol

Cheyanne: I don't get chest pain any more, but I used to, and get I palpitations, but not as often as I used to.

Oh and I get all kinds of headaches, some are all over my head, others for some reason are only in the front, back, or side. 

see you guys in a couple weeks. : )  Logan.

Tuesday, June 26, 2012


Short post, just fainted.

Question: how much indepedence do you have?

Love Rhianne

Thursday, June 21, 2012

Rhianne has been too sick to get online, so she asked me to post this video for her. Feel better, Rhianne! - Cheyanne :)

Wednesday, June 20, 2012

Where is everybody?

I've noticed that barely anyone has posted lately. I hope you all are doing okay. :) Summer is here and brought the humidity with it. My POTS has been flaring, and the frequent (everyday) storms are causing my EDS pain to worsen. Yesterday I got some sun. I laid out for an hour and twenty minutes. I desperately needed it! On Monday I am getting fitted for my ring splints and stuff, so I am excited about that. In early July I have my cardiologist appointment. By the looks of my symptoms I probably need to go to one. Ever since yesterday I have had this off and on chest pain. My chest also burns and I am having palpitations.

That is about all that has been going on with me lately. Since nobody has posted there isn't any questions. But I'll ask one. Do y'all get random chest pain and palpitations like that? They don't occur together, just around the same time.

God bless.

Friday, June 15, 2012

Boring Week

Hey guys :) My week has been pretty boring, I haven't done much besides homeschool work and read. But today (as in Thursday) I went out to breakfast with my pap, which didn't end very well. The restaurant we went to was really loud and bright, so it was a huge sensory overload and made me feel really sick. So I spent pretty much the rest of the day on the couch and/or napping. 

I have been trying to exercise some, since my family is going to the beach next month, but that too hasn't ended as I'd like. I tried some yoga but my muscles and joints have been hurting so bad since then, so next time I think I'll try something not as hard.

My allergies have also been acting up (I think). My throat has been hurting almost every day but I always forget to take my allergy pills!! I'll probably try taking the allergy meds, then if they don't work then I'll go to the doctor. Hopefully I don't have strep or something again.

Anyway, I'm in the process of making another video, so that should be out soon :)


What part of your head are your headaches/migraines located at the most of the time? It depends, sometimes right above my eyes, other times they're on the side of my head and if it's really bad, it'll feel like my whole head.

What are your plans for summer? Finishing homeschool, going to tour colleges (I'm going to one in 2 weeks) and going on vacation.

Have a nice weekend,

Wednesday, June 13, 2012

My internet hasn't been on :(

So...I did not have time to make the video that I wanted. :(  My internet has been down. As soon as it came back on I had to do online college orientation.

My trip went well; although I am exhausted still. Dr. Tinkle was really nice. He diagnosed me with Ehlers Danlos Syndrome type 3 with Marfanoid Habitus (mild physical characteristics of MFS). I am relieved to finally be officially diagnosed. We have been suspecting that for awhile now, but it feels completely different to hear a doctor confirm it. 

He will be sending a plan to my pediatrician. I will be put on heart medication. He was upset that I was not on any. I have to go to physical therapy at Shands. I was told to get fitted for a cervical collar that I can wear when my neck is bothering me. I will also be getting fitted for ring splints. My fingers are doing some weird things. Some of the tips are constantly hyperextended. A couple weeks ago I subluxed one pouring a drink (it got caught on the pitcher). I'm not dislocating them all of the time, but I am getting the ring splints for more of a prevention type of thing. 

Oh! And he told me that I was on way too many supplements. The only supplement I have to take is coq10 and my chewy vitamins. It is not advisable to be on so many supplements with stomach problems because they are a very big irritant to the lining of the stomach. That can exacerbate symptoms. 

As of right now that is about all I know. I will know a little more once the plan is sent to my other doctor. In the meantime I have been busy with school and making appointments. 

Questions and replies:

Hannah: Your post on anxiety/OCD sounds exactly like me! I could have written that post. Hahaha. I am glad that you are overcoming some of it. :)

Rhianne: I pray everything goes well while you are in the hospital!

Miranda: I hope the medication switch helps!
Question: Do you have a geographic tongue?
I do not.  

Michelle: Congratulations on graduating. You have a bright future ahead of you. :) By the way, thanks for the card!
Question: What are y'alls plans for the summer?
I am not doing much of anything. I'll probably be doing school the majority of the summer. I might go to the beach a time or two though. :)

Logan: I'm sorry you aren't feeling well. I have the "almost blackouts" many times a day. They are strange because you only go partially blind. Luckily they aren't quite as bad as the full blackouts. 

My Question: What part of your head are your headaches/migraines located at the most of the 

I hope you all have a good rest of the week. 
God bless.
-Cheyanne :) 

late as usual

I'll try not to blabber on too much, i feel absolutely horrible right now... : /
I over did it today, actually I over did it talking with Christine.. hopefully she will be able to post next week!
I spend so much of my time isolated, so when i actually get the chance to TALK... really talk to another human being, I usually get a little... enthusiastic. I was talking too fast, too loud, and TOO MUCH. I got a mild headache, and some occasional dizziness and muscle jerks while talking to her, but I kept going and didn't stop. And later in the day i totally crashed.... so here i am..... YAY. I love being sick. *sarcastic pout* But I'm sure I will feel fine in the morning. :  /
Oh and i almost blacked out today, i stood up, walked out to the kitchen to drink something, and almost went completely blind. I actually thought i was going to faint, lately when i have my "almost blackouts" they feel slightly different than the blackouts I used to have.. I actually feel the blood rush down into my limbs much more than i used to.  I like feel a fluid-like rush of heat into my lower legs, and sometimes i can even feel the blood rush through my thighs and into my lowers arms too. Also, right after the heat rush into my limbs, i don't spend very much time feeling "tingly" like I used to... I just kind of jump right to numb and sometimes i seem to skip the tingly part altogether. I feel more tingly after its all over and I'm trying to shake the feeling back into my arms and legs. And I don't have the ability to "lock my knees any more." I used to lock my knees when i felt a blackout coming on so that i wouldn't fall over, and it worked 99% of the time. I would remain up-right the entire time through a blackout. Even the severe ones where i would be blind, dizzy, deaf, numb/tingly, paralyzed, and where i would still be awake but not able to really form a cohesive thought.... i would remain standing somehow by locking my knees first. But I usually can't do that any more. Its like I don't have the strength in my legs any more when I'm about to black out to lock my knees. So at all I can do is try to grab on to something near by and hold on and hope I don't fall down. This usually works as long as there is something nearby to grab on to... go figure.

Find joy in the tiny things, even if its just a lady bug crawling across the window." - my mom

On a happier note, I looked out the windows this evening and the sunset was amazing! The clouds were lavender, peach, and cotton candy pink.. and sometimes in-between. I don't think i have ever seen a color halfway between peach and cotton candy pink until today, and it was a treat! Also there was a point where the clouds were all one color, and it was like cotton candy blue sky, with cotton candy pink clouds.. and no other colors! It was adorable! I wish i could have taken pictures, but i wasn't feeling well, my camera is dead, and i have a hard time taking pictures out of windows anyway. Maybe I just don't know how to use a camera, but when taking pictures out of a widow the camera always just focuses on the window screen and won't look at the scenery behind it! If someone knows how to fix that lemme know.

Jesus loves you!


Sunday, June 10, 2012

One week after Graduation...

Here I am feeling half decent, subbing for Rhianne, who is off to the hospital and I hope will be okay <3
SO I've been having major headaches and doing workouts has seriously affected me, but I'm still striving to get to my goal weight. I'm almost there, but not quite.
I had a graduation dinner last night and my family surprised me with loads of cash. It was really kind of them and I appreciate it greatly. Also I got to spend time with my bestfriends.

To my left is Emma and to my right is Alex. They are some amazing friends and crazy krauts. I wouldn't trade them for the world.
I graduated last saturday and I had no idea how much standing was involved! Plus I was major nauseas so that wasn't fun, but I did it and it feels so odd. That is half of my family that was at my actual ceremony, by the way.

Anyways I am doing good, not great. but that's the norm these days.
I hope y'all are doing well and I hope your summers are fun filled and not super hot like it is here in Houston.
What are y'alls plans for summer?
Stay strong and have fun
Michelle R

Friday, June 8, 2012

Medicine Change

Hey guys!! Since there was only Hannah's sub post and Rhianne's video this post is going to be a short one.

My week has been pretty boring, I've only been out of the house 2 or 3 times. I did help my dad with our garden, I mostly packed down sod into holes in the ground and played with worms :P Immature, I know. But the garden will have quite a few vegetables (I know there's corn, peas, pumpkins, watermelon and some other things) and we also planted some flowers.

The other time I was out of the house was when I went to my psychiatrist appointment. When I was there we discussed switching my Luvox to Prozac.  Since Luvox takes a few weeks to get completely out of my system, we will gradually reduce my dosage of Luvox, keeping the Lamictal the same and adding a small dose of Prozac, so my body has time to adjust to the new meds. I go back to the psychiatrist in 3 weeks, so hopefully it will start to kick in by then.

Other than just reading (I have 2 books that I'm trying to read now) I'm researching colleges. My dad wants me to schedule a date for one of my top-picks, so I can get a tour and maybe sit in some classes. I also have yet so schedule for my community college classes, which I'll be doing tomorrow. Unfortunately I have to get up at around 11am for the appointment, which is hours before I'm used to now.

I don't think Hannah or Rhianne had a question, but mine is do you have a geographic tongue?

Have a nice weekend,

Wednesday, June 6, 2012

Feeling Good! And...Anxiety/OCD

Hey y'all, Hannah here. Rhianne posted for me last Friday because I was sick and I am subbing for Cheyanne, now. I hope you are okay Cheyanne! <3.

My body has been a bit of a roller coaster. I am amazed at how well I have done these past couple of days, though I am still having bouts of feeling bad. I've been getting up earlier (because of having to take my midodrine) and then my Midodrine helps me get going, and for those of you who don't know, it's rather fast acting so it doesn't take long. I have been out of bed before 10AM quite a bit and that is a huge accomplishment for me to keep up with, instead of crashing after a short series of days. I did hard work today and didn't lay down once though I was tempted and had my moments of POTSy feelings and fatigue. We are preparing for our pool that us and my cousins who are also my neighbors are sharing. Today I dug up some grass and weeds (I was on my hands and knees, of course) went on all three trips to get loads of sand, and helped scoop out some of the sand. I've also been helping the daycare kids and my cousins with "school" in the mornings for the past couple of days. I am just enjoying this "holiday" with my body.

Part of me could certainly complain and say, but I'm still having headaches! But I'm still having GI issues! But I'm still having... But I feel like instead I should rejoice and say that there IS hope for those of us who are sick to still get out and live our lives. I told my mom yesterday when we were moving things around out of the pool area that I'll probably have high blood pressure the next couple of days, or something like that (I haven't checked it to know), but I can't live my life in bed, can I? What I meant was, I felt okay then, so I didn't want to go lay down or sit out because I could potentially pay for it if I didn't. However, please know this is not medical advice nor is this appropriate for everyone. When my crashes used to be worse I couldn't do this, but my crashes are improving in severity, to a more tolerable place, so I feel like I can pay the "price" of doing things now without putting myself in misery. :)

Anywho, on to the questions 'cause I'm going to have a long answer for one of them :)

Michelle K: Have you had a tilt table test? If you have had more than one, have you ever had one on medication? Yes, and sort of. The first one I wasn't on any medications that should affect my heart. However, for the second one I had, I didn't stop any of my meds (including my SSRI, which I think takes at least two weeks to leave your system- and this one does help my POTS quite a bit) until the night before. Also, I am sorry you are not doing well at the moment. Hang in there! 

Cheyanne: Do you have any eye problems? I have an astigmatism, and what you are describing happens to me as well. I am assuming the focus issues for me would be that, however, I do get random blurriness and other issues with my vision which I attribute to Dysautonomia.
 For those of you with anxiety problems, have you noticed that it gets worse at a certain of the day or year?  I'm assuming you meant like a certain time of day or year. This is where my long answer is going to be... You guys ready for this? I hope so ha ha.

When I was a kid, I went to the movie theaters with my sister and friend (and when I say kid- I was maybe seven) and my sister was throwing up everywhere (I hope she doesn't hate me for posting this!), and on the car ride back she was still throwing up everywhere. We had a station wagon where the back seats faced backwards, so I was sitting with my back to back to my sister. I remember that was really upsetting to me. Then when we got back home I threw up some time that night. Ever since, I had a fear of vomiting, and for the sake of the person who I feel in their love was trying to help me, after a period of time made my fear worse, I will not say who or what- but my fear of vomiting got out of control. And of course it'd be wrong to push the blame for my anxieties on someone else. It was my anxiety <3. It was to the point I wouldn't eat at times. There is a name for this fear, and while I have never been diagnosed with it, it's called emetaphobia. 

I've carried this fear ever since and it spiraled into other anxieties, big fears of germs, and I hated going anywhere that I thought I could catch something or if I left the house feeling the least bit sick (which was most of the time- I was even a bit sickly as a child, perhaps some of it was anxiety too, I don't know). I would wash my hands until they were bleeding.

and for the sake of this post not being a book, I will move on... 

But here comes the sunshine! 

I have been fighting and fighting hard against my anxiety. I decided it was time to take hold of it, I think it was probably a year ago, maybe a little more. But through TONS and TONS of prayer and reliance on God and His promises I have gotten rid of a lot of the debilitating symptoms of my anxiety. My anxiety usually no longer keeps me staying at home in isolation because of fear. One of the other things I have done is purposefully expose myself to things that cause me anxiety to sort of desensitize myself to them. 

I am determined to get rid of my unhealthy anxiety. And, I will tell you guys- it is worth it to get help or whatever you need to do to deal with it. The more I overcome, the more accomplished I feel. It just gives you a sense of accomplishment knowing that you overcame or are overcoming something that has plagued your life for so long. 

I definitely still have anxiety but not nearly as bad. I still have a fear of throwing up- but it no longer keeps me from being around people who are sick or may be sick, etc. Though the anxiety may still be there in my head- I am fighting it. My other OCD tendencies are getting less and less as well as I fight them. And please note, I understand this is not always how everyone can deal with they're anxieties. But for me personally, I am getting better. Do you know the saying, inch by inch is a sinch! Yard by yard is hard! By tackling one thing at a time as it came, it has helped tremendously. 

And to answer about the times of day or year, my anxiety is worse when I have too much time on my hands (here's another saying you may know, "idle hands are the devil's workshop"), of course, for us, too much time on our hands is usually very unwelcome because it's usually our sickness, so this isn't exactly something we can control by always getting up and reading a book or something of that sort. And usually flu season (as I am sure you could have guess) makes my anxiety worse, but again- there are improvements, and I am determined to keep making more improvements! :). 

Miranda's question kind of goes with yours, so I will go on to hers...
Have you ever gone to or considered therapy or counseling? Yes and yes. I have seen counselors before. Two, one of them was when I was in 10th grade (I think) for issues I was having having with my mom (and praise God, we are like best friends- she is so wonderful!), and to be honest- I loved the woman but I stopped going because I felt it was causing more harm than good. The light at the end of that tunnel for that also came through prayer and trusting in God and learning to forgive and deal with my callousness. More recently, I think last summer, after I was hospitalized and they just really didn't understand what was happening to me, they wanted me to see a counselor. And she had POTS (and she actually said I was handling my POTS fine- not to say this to boast, but to just say that because of how often we are dismissed) but I also didn't feel like I could completely open up with her because of my doctors then dismissing all my symptoms as anxiety. I actually only saw her twice? because she was going to do her career solo and I never got a call from her and the organization she had been with couldn't get us in contact either. However, now, if I had the money-  I would love to see a counselor with similar beliefs as mine to help me continue to work my OCD tendencies out. However, I am suppose to start behavioral therapy and I had two different explanations given to me as to what it was- so I'm not really sure if this is going to be a therapy type thing, or as the docs explained, someone to help me work out my schedule and habits better to sleep. Also, I am sorry your OCD symptoms are getting worse, I know how torturous they are! I'm here for both you and Cheyanne and allllllll you girls!

Michelle R: Congrats on graduating! Also, for your legs, may I recommend B-1 and Biotin and Folic Acid (but folic acid can deplete you in B-12 so be careful). B-1 helped me a while back when I could barely walk from severe leg weakness/pain. And now the biotin and folic acid help my restless legs.

Hayden: Keep us posted about your graduation! I certainly hope you can, I know that would be such a huge relief <3. Hang in there!

Logan: I didn't read your post yet (I plan to), but I hope everything is okay with you <3.

Rhianne: You keep hanging in there, I know this upcoming hospital admission is not something you want to do, but I think the girls would agree that we are cheering for you and hoping that something helpful will come of this stay. If you have internet access there- skype me/message me whenever! :). Praying for you!

I think that was it for the questions. I hope everyone else is okay too :).
Thanks for reading my very long post! Anyone, readers and all- feel free to contact me if anyone wants to talk about coping mechanisms with OCD/Anxiety. I am not there yet, but I know we can still be there for each other :).




Saturday, June 2, 2012

Rhianne's random video

It won't let me link my video, but search dizzran on youtube and its potsy party.