Friday, May 3, 2013

We All Seem To Be Struggling A Bit!

Hey lovelies, this is going to be a very short post as I am exhausted.

First, let me say, Cheyanne, I'm sorry things got so bad :( but I am happy with you that you are now home and seeing *some* improvement even though it may not be much <3 :="" am="" both="" doing="" either="" hugs="" i="" logan="" not="" p="" re="" sorry="" to="" well="" you="">
I have been doing poorly since Tuesday, and before that as well in other ways. I'm just hanging in there at the moment, experiencing heart and GI symptoms amongst other symptoms and issues. Y'all know how it is. My friend is getting married tomorrow and I am just hoping I can make it!

Alright loves, that is all for now.
Until next time...

Tuesday, April 30, 2013


Hey guys, I'm not feeling well today (mainly GI stuff at the moment), but I thought I would share the link to my personal blog. My old one got hacked so I made a new one, but I don't think I ever updated with the link.


Wednesday, April 24, 2013

I don't feel good.... I am going to keep this rather brief.

Like two Fridays ago I was hospitalized until last Tuesday due to that gastroparesis flare that I was talking about. I just got fluids the whole time because I was not eating much at all. There was one day where I did not eat period. They did x-rays and it showed that I was really backed up, so my intestines were not working either. I had not went to the bathroom for about a week. After a bunch of unpleasant things, I got to go home. Thank the Lord that my nausea decreased significantly. I know that my stomach is not working to the best of its capabilities, but I am not as nauseous. I am thankful that I am about to get food down now.

Since I have been out of the hospital, I have been beyond my normal POTSy. I assume that my autonomic system has decided to lay off of my stomach and to attack my heart. I'd take heart symptoms over GI problems anyday so I suppose I will be okay. I haven't fainted yet!! That is always a plus! :)

I hope everyone is having a good week!

God bless xxx

Friday, April 19, 2013

I'm Not Good With Titles!

Hey lovelies! Sorry I missed posting! I come to you playing Mario Kart (writing this in between live races- ha).(Okay, that didn't work so well...)

I'll start of in response to you other gals:

Logan: I'm glad you are having ups with some of your symptoms but sorry about the downs with others :(
I know what you mean about the sensations like something is crawling on you or things of the like. I get sensations like droplets of water are falling on me.

Cheyanne: Congrats on college and driving! Whoop! Sorry though that you are dealing with a worsening of symptoms! To answer your question, Have any of you had any experience similar to mine regarding the sensory overload? Does it mess your body up for a long period of time like this? I wish I had an answer more helpful, but usually for me, my sensitivity comes in spurts, and the symptoms I get are reactions indeed to the sensitivity, but they usually don't last longer than the sensitivity.

Right now I am dealing with awful acid reflux, the kind that makes you feel like your heart is trying to kill you or something. However, praise God, our doctors office had some Nexium samples, so I'm going to start on those tonight.

I've been exercising a lot for almost a week now as well as helping my mom with daycare for most of the day (that I'm awake- ha.). I've been really enjoying it. I don't know that I'll do much today because this acid reflux is horrible (I'm in my recliner right now). It drains my energy. Yuck.

I think that is all for now. Until next time...

Wednesday, April 17, 2013

Hey Cheyanne

Hey girlie, I get the sensory overload too. I'm sensitive to sound, temperature, and touch everyday, and I'm often sensitive to light and smells too. Its pretty much kept me home bound for the last 4 years, and although my sensitivity has been a little better the last say.. month and a half... I still have to protect myself when I'm out of the house, and sometimes I can't go out at all. Especially if I have a migraine and my sensitivity is extreme that day, or its too hot/too cold... something beyond my control where I can't protect myself.
Miranda and Hannah will remember this.. 2 years ago me and my dad drove down to visit them. I got very sick from sensory overload the day before we left, and the trip was full of sensory overload too. For about 2 weeks I was pretty sick and I had problems regulating my body temperature. I had to be very careful how I dressed, if I tried to use a blanket or wear too much clothing I would get a fever. After we got home and I was able to rest with some peace and quiet for a week, my body recovered and things pretty much went back to normal.
I don't think you're crazy, its possible that sensory overload worsened your symptoms, or it could have just been a coincidence.
- Logan.

Wednesday, April 10, 2013

It's Cheyanne! (sorry I forgot last time I was supposed to post)

I was doing pretty well for the past few months...aside from fatigue and the usual Ehlers Danlos pain of course! I have actually been trying to have a little bit of a life. So far it is working out decently. I am continuing to go to the high school for one period everyday and going to the college on Tuesdays and Thursdays. The rest I do online. Today I got my drivers license. Yay! I hardly ever drive because by the time I get to where I am going, I am too exhausted/in pain to get myself back home. Regardless, it is a nice accomplishment even if I hardly ever get to drive. 

I am currently not doing as well. My stomach has decided not to work. It is REALLY bad and close to 2010 all over again. 2010 was the worst and when I got down to 90 pounds. What is odd is that right before this flare began (I mean literally...right before) I had walked into this shoe store at the mall and got a sensory overload. Between the lighting and carpet and walls it wacked me out. My head felt funny and I couldn't walk straight. As soon as I got out of the store my stomach started hurting and I got super nauseous. Ever since then, my stomach has been bad. I am almost scared to bring that up to a doctor because they will think I am a complete looney tune. 

Hannah: What is your favorite "pick up" beverage? What hobbies do you have?

Hmm...when I am POTSy I usually gravitate to Powerade and any other time I like water or Diet Coke. :) As far as hobbies go, I like to blog/write or listen to music. I am constantly listening to music. 

My Question: Have any of you had any experienced similar to mine regarding the sensory overload? Does it mess your body up for a long period of time like this?

I hope that everyone is doing well! God bless. xx


A Road Map Would Be Nice

Hey guys, I know its been a few weeks.. 
I'm still trying to sort my body out. I seem to be going through some major symptom changes! My sensitivities are better, but I've been more POTSY lately, and I'm having temperature regulation problems, while my GI problems are a little bit better. On top of that lots of my minor symptoms have changed. For example, I only have excessive sweating maybe 2 or 3 days out of the week now, the rest of the time I don't seem to sweat at all, even when exercising or doing chores. I used to feel sensations that aren't real a lot, like bugs crawling on me, or rain drops on my skin. Hot, cold, or wet sensations.. things like that, and it used to happen constantly. Many times a day, every day. Now it happens maybe once a day, or not at all. Also, my pupils are super dilated all the time, they look freaky huge. That hasn't been a regular/daily symptom for me in months, my pupils have been pretty normal for a while. Its a lot to take in, and I'm kind of on my tip toes wondering what my body will do next, because its so unpredictable. I keep waiting to see if something else will get worse, but I'm really hoping that else something will get better.  
We decided to try increasing some of my meds slightly, so I'm hoping that will help with my POTS. Otherwise, my only main concern is with my temperature problems. Its easy to regulate my temperature at home, we set the thermostat as warm as I can stand it (usually 70-75 degrees F), and if necessary I dress warmly too. At home my temperature mostly hovers around 98.0, which is perfectly fine, but my temperature drops when I leave the house.  I dress warmly when out of the house, and I keep an eye on my temperature, and so far it hasn't dropped to a dangerous level (at least that I know of). What bothers me is that my temperature can drop 2 or 3 degrees even though I'm really only exposed to the cold for a few minutes. When we go somewhere I am only outside in the cold for a few seconds when we walk between the car and the building, and it may also be a little chilly in the car, but only for a few minutes since we turn the heat on. That's it, that's all it takes. I'm glad that spring is here and I'm looking forward to the warmer temperatures, but it also occurred to me that summer is coming, and soon everyone will have their AC cranked. Even in the summer if I go into a chilly building, I might have to watch my temperature. I am super thankful though that I don't seem to be having problems with high temperatures, my temperature doesn't seem to go over 99, even with a heavy blanket on.
In answer to Hannah's question, my hobbies haven't changed much. Mostly I knit/crochet, or read. (I need a life).

Thursday, April 4, 2013

Hey guys! I hope you don't mind me posting an hour early from my day. I'm having a bad night so... Why not? Though I will say, I'm starting to feel awkward just talking about myself on a group blog. :p. I hope you ladies are okay.

Unfortunately my cardiology appointment for tomorrow was cancelled on their end, and it was a re'schedule because they cancelled the last appointment as well, and it's already been six months since my last cardiology check up so I'm kind of stressed about it, but we're going to try to get in with a local cardiologist and if all the man does is give me an echo, I'll be pleased for the temporary check that things are still okay. Last time the cardiologist pointed out things we already knew about my heart but when they give even just a tiny bit of importance to a defect it makes you a little bit nervous, y'all know what I'm sayin'?

I'm sitting here with things in mind to say but can't remember the timeline in which they happened so I don't know if they were in my last post... Ahhh ha. Like I've said this time of year isn't good for me, but I've also pushed myself- a lot. As you ladies know what I mean, I don't wanna live my life from bed, I want to get out and do things even if it has a physical cost. Just as "they" (whoever they are!) say, do you want to live dying, or die living? My dad translated that to help me verbalize my feelings about pushing myself. Do I want to live sick, or be sick and live? Hopefully y'all get that and I didn't already say that before (that conversation was months ago, but feeling these heavier consequences for my choices to push than recently is challenging that thought). I want to live! Even if just for one day of activities for the expense of a week in bed. I want to live. Not that you can't live from bed, I had begin the journey to be content with that and encourage others so be. Sometimes when you are bed bound, pushing like that is simply not an option when walking to the bathroom gives you PVC's, and I encourage those who are still more often like that than not, to make the most of your life, because it is still valuable! And those that can push to sit on the couch with your family instead of laying in your bed, I encourage you to do it! :)

Alright, enough of my musings about pushing, until next time,
Hang in there!

Friday, March 29, 2013


No posts since mine so we'll just dive right in to what's happening with me :).

I have a cardiologist appointment coming up, I'm both nervous and excited. My Cardiologist actually cancelled on me, and the soonest appointment was with another Cardiologist, so I'm nervous because it's a new Cardiologist, but I'm excited because it's a new Cardiologist! Ha- hopefully you get what I'm saying. I hope he/she can offer some fresh perspective. My current Cardio is incredible, but I am hoping this Doc is less eager to prescribe me medication without first investigating more or at least starting me on small bits at a time. I've been a little traumatized (haven't most of us? Ha.) with my previous, more recent experiences with medications. I never really thought I'd be one of those Dysautonomiacs who would have a bad story about a medication... Ah, at least it took about four-five years before that happened!

I have been still having ups and downs. Lately my BP seems to be more often over 120/80, than under. And my pulse has been higher, but it's March and March doesn't seem to like me very much, so...

I'm still trying to be a crazy craft lady. Today I went and got some scrapbooking type supplies, and I've been making cute (if I do say so myself!) gift tags and cards! It's nice to have something to sit down and focus on and be productive. Ahh, its refreshing when you have a productive day, isn't it?

I have some other ideas of things I want to make, so hopefully I can do nice things with what I have now, and then maybe move on to more variety :). I'm hoping to make some awareness stuff!

Alright my lovelies, have a lovely weekend and Easter! Praise be to God for Christ's glorious sacrifice! He is risen!

Until Next Time...

Friday, March 22, 2013

What Are Some Hobbies You Have?

Hey guys!

I'll start off by responding to the previous posts:

Miranda: I am glad you finally got the diagnoses of EDS, however, I'm sorry you have it :(. I think you've known for a while now, and diagnoses can be a mixture of relief (finally have an answer), yet a stress (having a new diagnoses). I'm proud of you for planning for college, good for you and go you! I'll pray for you with the stress <3 .="" actually="" anxiety="" be="" can="" feel="" frustrating="" have="" how="" i="" incredibly="" it="" know="" logically="" p="" problems="" so="" to="" too="" transfer="" understand="" what="" you="">
Rhianne: Go you for pushing through your symptoms and having a high attendance rate. You should get an award because I think for a lot us that seems virtually impossible. Ha. Whoop for Rhianne! Good for you too, reaching for your dreams and studying hard! Also, that's amazing about your vacation/holiday! :).

Alright, on to what's happening with me... Hehe.

Right now, really not a lot. Like I said in my previous post, I am trying to push my limits, and as I do that I am finding myself having more difficulty with that. This time of year just doesn't seem so nice to me. But we all seem to have our bad time of year, am I right or what?

Right now I think I have a virus... But I've been working on crochet projects throughout the day off and on, and I've enjoyed that. I'm not a big fan of non-natural fibers, I've read some things about chemicals added to our blankets and stuff (I think it was to make it fire-retardant or less flammable or something) actually causing insomnia. For a while I had been very unrealistic with how I wanted to go natural, but I think I'm coming down to the real world. I've gotten some 100% virgin wool for cheaper than its regular price (with coupons) so I'm being spoiled with that at the moment.

I read somewhere about someone explaining a healthier way to be more natural. Basically, it was mostly in respect to relationships, how it can in my own words, be overbearing. And so, that's helped me be a little more lenient and I think its better that way :). Right now I'm trying to make things to sell on since I can't work right now as some sort of means to bring in income. I've recently been blessed with some money and I'm trying to use it wisely, and thus far I've been using a bit of it to purchase things for making different things. Its really fun too, so even if I end up never selling any of it, I'm really enjoying it! And... its productive!

Alright my lovelies, I'll leave you there...
My question is (probably been asked like five times before... but they change!) what are some hobbies you have? Right now mine is basically crafts. :).

Until next time...

Thursday, March 21, 2013

Rhianne checks in

Hey guys.
Its Rhianne.

I will try to keep this short and sweet but I decided to make a post about everything. I haven't posted in months and months. Probably like a year I swear!

I had a really rough year last year and at my worst I could stand for two minutes without fainting. However, I still managed to maintain a really high attendence rate and I finish Year 11 with firsts or seconds in all classes (except for English).

I got better over September. I even got to go on my first family holiday since POTS! We went to a bunch of amusement parks a few hours drive north and stayed in a hotel. I managed to go on even the scariest of rides and suprisingly I didn't feel the slightest bit sick. I did have to use a wheelchair for the trip though.

I started Year 12 which is my final year of school. Its so busy. I am hoping to graduate with an ATAR mark of 90 which will easily get me into my dream course of occupational therapy! However, to get that I need to study hard.

I also need to do some extracirriculars to put on schlorships. I do karate now and I help out at the primary school. Its all really hard for me but I throughly enjoy it. The people at the Dojo (what a karate place is called apprantly) are really nice about the whole POTS thing. My fitness suprisingly isnt that far behind everyone else. I do have trouble doing some exercise things like stretches.

So I think that's my life. It's not that much but between tutoring (I have gaps in my knowledge from missing school) so I get tutored for Maths and English, Karate, volunteering and school I am crammed for time.

I now need to go study for exams. Sorry for anyones day I took up. I might do a random post like this every so often.

Wednesday, March 20, 2013


So I haven't posted on here or my other blog(s) in a really long time for a multitude of reasons, so I'll just give a quick update.

In January I finally got in to see Dr Grubb. We drove through a snowstorm in whiteout conditions to get there, then spent the night and had the first appointment of the day. He was with us for almost 3 hours (and was amazing); during that time I was diagnosed with EDS Type 3/Joint Hypermobility Syndrome, which explains why I developed POTS then was put on Mestinon. My mom and I now have an ongoing joke that it's all her fault that I have so many health problems, because apparently EDS is carried from the mother.

Rewind to December, about a week before Christmas I got part of my big toe nails removed on both feet. From what I've experienced, the findings that EDS people tend to resist local anesthetic to be completely numb is true; I had twice as much novocaine then couldn't feel my toes for 20 hours instead of the usual 6. The drawback to having twice as much anesthesia is that it also had epinephrine in it, so not only did I have numb then painful toes, but it was messing with my blood pressure and pulse. My left big toe healed in about 8 weeks, while my right never did. So after two more removals/debriding and a course of antibiotics for the infection that set in, I finally saw a different podiatrist this Monday. She seems to think that it's finally starting to heal but gave me more antibiotics (which mess up my stomach more than anyone could imagine) and sent me for an x ray to be sure that the infection hasn't spread to the bone.

Other than those whole fiascoes, I've started (psycho)therapy again and am on more medication (Luvox, Prozac and Lamictal) because of the impending doom stress of going off to college in less than 5 months. After having a few sessions with my therapist, she suggested starting Cymbalta which could also help with the joint pain that I've been having, so I'll be talking with my psychiatrist about that at my next appointment.

Speaking of college, I was accepted to a college that is only about a half hour away from home, which my parents are happy about, and received over $24000 in grants and scholarships. I only plan to stay there for a year, then broaden my horizons to a school that is actually in my top picks. This Saturday is an all-day admitted students orientation thingee, so I have no idea how touring the entire college/walking around for 5 hours is going to work out. I also plan on getting disability housing (such as bottom floor, access to elevators, etc.) but I'll have to wait to get a meeting with one of the disability advisers for that to be concrete.

Anywho, I'll go onto the questions.

Logan: I'm so happy that your sensitivity is better!!

Hannah: What is your favorite "pick up" beverage? I'd usually go for some Gatorade, but only the cool blue kind (it's the best).

Until next time,

P.S. I forgot to mention that a few weeks ago I got two pet rats, which explain why the title is 'Rats', I'll share some pictures on a later post. :)

Friday, March 15, 2013


Hey lovelies!

I'll start off by responding to Logan's post :). Girl, it definitely makes sense about the medication. I'm kind of in a dilemma with my Midodrine. When I first started taking it again (after a few years) I started it with Propranolol which caused bradycardia and low blood pressure. However, after I stopped the Propranolol the bradycardia kept coming. Finally I figured out that I was getting the bradycardia shortly after a dose of Midodrine. But now that I've stopped the Midodrine it's like some other symptoms come back so it's one of those things where you have to decide if the benefits outweigh the negatives!

I have been trying pretty hard recently to test my limits and see just how far I can push myself without having a horrible crash. The past few weeks have been crazy, as some of you guys know (to be honest, it's one of those days where I don't want to talk about it, but my grandma passed away and my grandfather on the other side of my family just got out of the hospital after a scare), and I've just been waiting for a horrible crash. I have had my crashes for sure, as well as getting ill and having awful symptoms, but I haven't had a crash yet where I'm stuck in bed for a few weeks. Hopefully that makes sense. I have been experiencing bad fatigue again though!

I'm trying to push myself to be more productive and do more even when I don't feel like it. Today's one of those days where I feel like I could just sleep (My mom had overnight babysitting last night and I took over for her) but mentally I don't want to do that. So, I'm sitting outside soaking up some sun as I write this. Whoop, Whoop! It's one of those days where I have things to do but you're just so tired you really don't know how because of lack of energy, but hey, I am working on this post, and that is indeed a plus!

I had actually gotten offered a job at a vitamin shop, and let me just tell you, this girl was super stoked. However, after coming down from the initial excitement, I have realized realistically, at this point I'm just not there yet. There are signs that I might be getting to a point where I can do a laid back just but at this point I just don't think I can. It's hard to gauge how long it will take because it's taken over a year just to get to the point that I am at now.  So for now, my job is helping my mom with daycare and for that I am thankful :).

Alright y'all! I hope you guys have a lovely weekend!
Here's my question... What is your favorite "pick me up" beverage? What I mean is, when you're worn out and attempting to have something to give you energy. For me, I love tea (though sometimes it gives me tummy issues). And occasionally, coffee! But that is evil for acid reflux and can accelerate heart rate without caution so it's not usually the first thing I go to :).

Until Next Time...

Tuesday, March 12, 2013

So I Have Some Good News..!

Hey guys, so Hannah has been working very hard at getting this blog going again. Hopefully we will have many more people posting, including some guests!
Things have been pretty interesting for me lately. Over the last month I've noticed that my sensitivities have improved a lot! My level of sensitivity to sound, light, touch, smell, temperature ect.. really varies alot from day to day, but most of the time I am probably only 1/2 or 1/3 as sensitive as I used to be. I have had a few bad days where my sensitivities were extreme like they normally are, but otherwise the only time my sensitivities were really bad was when I had migraines.
I'm thrilled! There's so many little things like being able to take a shower without needing ear plugs for the noise of the running water, or being able to turn up the volume louder on the TV, or being able to wear jeans with no protection despite the scratchy fabric. My dad is taking me out to places like stores and libraries more often, and at dangerous/busy times of the day. Normally when I try to go to a store or library or something, we go late at night or dinner time so that the stores will be empty and quieter. Now I'm getting a little more adventurous!
 My POTS has been a little worse though, and more.. unpredictable than usual. I'm having huge swings and I never know how I'm going to be feeling every day. On good days I can usually stand for 10-20 minutes! In general on those days, as long as I take my meds, and my salt, and get fluids, and I don't do anything stupid like jump up and down or try to run up a flight of stairs, I'm usually fine. 
On medium days I can only stand for a few minutes (no more than 5 at the most), but I can sit up for as long as I want.
On bad days I can't stand at all, and sitting up may be difficult or  I may not be able to sit up at all.
I never know what to expect, and its very annoying waking up and wondering what card my body has dealt me that day. I would consider increasing my meds, but while that may help on my bad and medium days, I'm afraid that it would mean I would be taking too much medication on my good days. Does that make any sense? lol
I'm getting kind of lightheaded, so I'm going to just save this. Talk to you guys soon.
Jesus Loves You! 
- Logan

Monday, March 11, 2013


Hello beloved followers! 
We are currently under "organization construction." (Does that even make sense?!)
We are working to try to get things moving here again. We are working to get a post everyday again, as well as a little something'something else :D. Please keep an eye out! 

Friday, March 1, 2013

Hey lovelies! I'm sorry I didn't read through the last posts :(.

This past week and the week before has been very challenging. My grandma passed away and my grandfather is in the hospital at the moment. So it's been one thing after another but nonetheless God is good :)

Trough this I'm learning new coping mechanisms to deal with stress because simply put, there's too much going on to continuously have on mind... And it can be hard not to think about things when you're sick at home, you've got plenty of time to think! But I've been throwing myself mentally into things whether its crocheting, sewing, drawing, or what have you. It's teaching me in a sense to push myself beyond my limits and be more productive in order to stay sane. Now here soon I might have a total crash blow out, but we'll see!

I think us dysautonomiacs should have a bit of a conference though to see what's happening with this blog. I myself am guilty of forgetfulness and neglectful ness at times, but I think we should really come up with a game plan :) when I can think to, I plan to try to get the ball rolling :)

I love you ladies and you readers, thanks so much for taking the time to read our musings.

This is such a short post I apologize, I have a lot on my brain at current.

Until next time....

Tuesday, February 26, 2013

Hidden Hearts Alliance

Check out this website guys, its awesome!

"Mik's Hidden Hearts Alliance mission is to offer hope through empowerment and community awareness to both hospitalized and homebound teens and their families who suffer from Dysautonomia and other life-changing hidden chronic illnesses."  

- Hope you all are doing ok. Jesus loves you!

Tuesday, February 5, 2013

Book Addict

I'll keep this short since I'm really not feeling good today. I really only have a few good "usable" hours early in the day where I'm up to doing chores, going to a doctor's appointment, ect. I usually get up in the morning sometime between 10 am and noon (due to being up all night with insomnia), and then I'm sick by mid or late afternoon. After that I'm pretty much useless lol. Sometimes I just wake up feeling sick too, on those days I don't even get a few good hours in the morning. 
In spite of that I'm trying really hard to get my room(s) cleaned up and organized. (And keep them that way.) And I want to start a new online course for school too called "Study Skills." I should be able to take it as an elective, and based on the course description I'm hoping it might help me find some ways to better manage my memory problems. Or at least get through school work faster maybe.
On the same note, I've had several Dysautonomia friends recommend doing "mental exercise" everyday to help brain fog and memory problems, like reading, schoolwork, playing computer games, doing crossword puzzles, whatever. I've just been trying reading alot the last few months, and when I do it daily I do notice that in general my thoughts aren't quite as sluggish! I haven't seen any overall improvement in my memory, or in my brain fog itself, but I think that on top of those issues.. over the last few years my mind has kind of atrophied a little bit from being homebound all the time. Like when I got sick I stopped going to school, I stopped reading all the time. I stopped playing flute and only I toyed with other instruments. I couldn't really be social or interact with people much. And then there are all the little things like not doing art or sports, not listening to music too much, or being able to even look at something that's too colorful or complicated, because of sound, light, and visual sensitivities. Do you guys get it? My memory problems and brain fog started happening right away when I got sick, but over the last few years I think my mind has also atrophied a little just from being homebound and isolated from all the stimulus and "exercise" it used to get every day. 
I think I'm just going to stick with reading for now and see how it goes.

Hannah: my favorite part of winter is probably the snow, it can be so beautiful! 

 John 16:33
 These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.”

Saturday, January 26, 2013


Hey lovelies, I hope we can really re-vamp this blog. I'm sorry to you guys and the readers that I've been so horrible at posting. By the way, this is Hannah and I'm going back to Fridays again :).

There is not a whole lot happening with me at this moment in time, other than the ups and downs as you guys know how that goes. Right now I'm trying to set small goals for myself to complete bit by bit. I started to have a bit of a "pity party" today about not being to a place where I could work or attend college, but I started to come back out of it :). There is so much value in this time, the here and now. Sometimes the time feels wasted, but when you're living in light of eternity, times like this really aren't wasted (though, don't get me wrong, it's definitely possible to waste time!).

It snowed here today and I went out to play in it :) I was going to try to post a video but I'm having problems uploading it right now to youtube, but if you wanna see it, I'm going to try to post it to my youtube and blog (youtube: hannahsdysautonomic. blog: soon!

I hope to push myself to really enjoy the little things in life. I was doing well at that for a while, and I want to get back to that. Not measuring a day by how much I can do, but enjoying what I can do, even if it's very little. That is something so beneficial and beautiful to feel :).

Logan, I hope you can find a formula that really works for you! You've come so far with pushing and fighting to get your GI under control, keep at it!

question: What is your favorite thing about winter? The snow? Bundling up? Sitting by fireplaces?  Lol.

I think one of my favorite things is bundling up. At least the beginning of the cold weather I love it. It's so comfy and cozy. Plus, the snow is gorgeous and when I can I love being in it :).

Alright ladies, I hope you guys are well!!!

P.S. Ladies, please don't hesitate if you notice I'm missing posting to say something, because it's likely due to my forgetfulness!

Wednesday, January 16, 2013

Your Lovingkindness Is Better Than Life

I have to admit... I was feeling pretty annoyed with myself, because I skipped posting for a couple of weeks. But then I checked the blog yesterday and realized that no one else has posted either. I apologize to our readers (if we have any lol). I will try to keep posting weekly, even if our other bloggers don't post much. (Mostly  because I'm stubborn, and bored out of my brain.) But never fear! You will always have my boring (and sometimes completely off topic) ramblings to read. 

The last couple of weeks have still been really tough. I have to be careful everyday how I spend my spoons, because I don't have very many. No matter how careful I try to be I'm usually sick and exhausted by mid/late afternoon and very sick in the evenings.  I've been in such a nasty mood lately too, I get mad at myself, other things, and other people so easily. Which reminds me.. lol. I had an upper endoscopy and my PEG tube changed to a Mic-Key button Monday morning. The nurse took my weight and height, but she hit me in the head with the measuring rod thingy. I glared at her cuz I was so tired and cranky, and then I felt bad afterwords. I know it was an accident, and she was a fabulous nurse the whole time I was there... a little oblivious to the amount of noise she made... but otherwise she was a sweetheart and completely made my day.
Anyway, I'm absolutely loving the Mic-Key button. Its much smaller, more convenient, more comfortable, and doesn't look nearly as freaky as the PEG tube. Also its easier to clean around the stoma... and taking a shower/bath or changing my clothes is no longer a freaking pain in the butt, I can just disconnect the extension so there isn't a tube dangling around in the way.

My stomach is being pretty fussy though. I didn't tolerate the last 2 formulas (Compleat and Jevity) so I'm using the Pediasure Peptide at the moment. Since the Pediasure Peptide has protein in peptide form (obviously lol) instead of intact protein that might be a clue. I can't seem tolerate anything like a protein/nutrition shake at the moment, no matter how slowly I drink it, and the higher the protein content the more it seems to bother me. I really don't want to stay on the Pediasure Peptide though. It may agree with my stomach, but I feel awful otherwise. I'm exhausted, run down, and more sick and irritable than usual.. (as most people would be if forced to live solely on milk shakes or any other form of “junk food.”).
There are some elemental formulas that are unflavored, simple, and free of some of the “junk” that Pediasure and similar formulas have, and the protein is in amino acid form which should help a ton assuming that's what I'm having issues with. My doctor is sending me a weeks worth of Vivonex RTF I think to try. In the meantime I'm trying to be very careful about what I have by mouth, (even what I drink when I take my meds) because it doesn't take much to upset my stomach and then its even harder to run my feeds.

Oh, when I was at the hospital on Monday morning, the nurse gave me a blanket. There was a logo tag sewn on it that said “Project Linus.” This is their website, if any of you guys sew, knit, or crochet you should check it out. They accept all kinds of handmade blankets, and they also have free blanket patterns on their website. Blankets just need to be handmade, brand new, and washable. (Child appropriate colors are best.) They also accept donations of blanket making materials like yarn, or quilting supplies.



 O God, You are my God;
Early will I seek You;
My soul thirsts for You;
My flesh longs for You
In a dry and thirsty land
Where there is no water.
So I have looked for You in the sanctuary,
To see Your power and Your glory.

 Because Your lovingkindness is better than life,
My lips shall praise You. 
 Thus I will bless You while I live;
I will lift up my hands in Your name. 
 My soul shall be satisfied as with marrow and fatness,
And my mouth shall praise You with joyful lips.
  When I remember You on my bed,
I meditate on You in the night watches. 

 Because You have been my help,
Therefore in the shadow of Your wings I will rejoice. 

 My soul follows close behind You;
Your right hand upholds me

-Psalm 63:1-8 nkjv