CarrieJessica

My insurance approved a power wheelchair. Mine does recline some. I love it! I'm so much more included with my family. I can go down every lane at the grocery store, I can take the dog for a walk even though I live on a hill, and things like baseball games or going to the zoo are doable instead of planned without me.

I absolutely love my wheelchair and I never thought I'd feel that way.

I just came home from my Mayo trip. I saw Neurology, Autonomic Clinic. This appointment was less than an hour.

I will say if you have the mindset of going for an opinion I'd say go for it. I went with expectations and was very disappointed. It was strange and confirmed that I am more than happy with Dr Randy Thompson in Pensacola.

I have a port and receive 6 to 8 liters of saline a week and 2 of them are infused with vitamins.

I went in thinking IV therapy would be the fix it button, it hasn't been. I will say I pass out less frequently and that in itself keeps me doing IV therapy but I am still fatigued, have an irregular heart rate, tachy and bradycardia, gastroparesis etc.. I think if you have had IV therapy and it works for you a port is the way to go for the long term. I wish I had been more realistic with my expectations.

Here is a blog post from my first week with my port. http://justmildlymedicated.com/injectable-power-port-for-iv-therapy-to-treat-dysautonomia/

and a follow up a month in http://justmildlymedicated.com/injectable-power-port-to-treat-dysautonomia-the-first-month/

I watched a swallow test online after my doc saying we might do one. I still am a bit blurry on what it diagnosis and what the treatment options would be :/

I am going in march and will see Dr Benorroch

So glad you are surrounded by medical professionals who understand POTs. Keep posting

Hey guys and girls!

I wanted to let you know a few Dysautonomia bloggers have been nominated for WEGO Health Activist awards! If you'd like to know who's been nominated you can look here:

Just Mildly Medicated

Living with Bob

If you know any others let me know!

Thanks,

Carrie (The Just Mildly Medicated gal)

I just shared it on my blogs FB page also, hope to get more peeps there.

I knew I recognized the name Hanice! As far as new we confirmed gastroparesis with the gastric empty study. Not thrilled about that one (at all).

I did recently find Lets Feel Better too.

A good gastroparesis blog I found is G.N.E. and GP

Thanks Alex!!

I did write about getting diagnosed on JustMildlyMedicated.com and found a few blogs that are worth following like G.N.E. with GP

Off to check out the links you shared!

Carrie

I am participating

Just got the diagnosis of gastroparesis, it wasn't a big shock as I was told it was likely. I've looked up some diet options but am always open to tips from others.

How do you manage gastroparesis?

Links and blogs welcome!

Carrie

YES YES YES

It starts like the chills, sometimes I think "Maybe its just the chills this time" but it lasts longer and get stronger. Sometimes its just an arm or leg others its full body. I am so tired afterwards too. I have talked about it with my doc and he thinks it maybe something my body does in "panic mode" when I might otherwise pass out. or pass out again after already having passed out.

I've gotten a few recorded to show my doc, they are here http://www.youtube.com/channel/UC-IxocQFB3xwKAAfTNmNr7Q

I have this.

Sometimes it can be like a pulsing below my shoulder or above my knee, other times its like my walking is slightly jerky.

My EEG came back normal.

Mine is Just Mildly Medicated.

Do you follow any? I know there have to be more out there, I've googled a few times but I only seem to find ones that have stopped actively blogging.

Awesome, I'll check out the designs. I am using my FB page and blog to raise awareness. It would be great if by the next generation Dysautonomia is understood by doctors!

Carrie

I know I look sick most of the time, most of the real world only sees me when I am together enough to be part of it... for me that means hair reasonably done, make up and dressed. I am volunteering tonight at my kiddos school, I'll be put together then... but right now... well, not so much.

Smoke and mirrors when I have the energy to do it!

They added a multivitamin to my IV therapy, everything was on the low end of average or low, my D was 23. I just added fibro to the list as was told if my VIT levels come up to the middle range of normal I may feel some relief from CFS and Fibro.

Fingers crossed

I am also not walking except for around the house, I use a power wheelchair for most things. I do feel better after 30 minutes of pedaling on my recumbent bike that I have in my bedroom, the motivation to start is just so hard :/

Carrie

I am always looking for blogs on life with Dysautonomia. I follow a few but I know there are more out there and maybe you guys are reading them!

I love Living with Bob and Musings of a Dysautonomiac

Carrie

LOVED IT!

Wow, your painting is beautiful!

My hobby is my blog. I has given me an outlet and let me connect with others... so basically its kept me sane

Carrie

I am so sorry to hear this, it's very unfair.

Have you maybe considered something you can control?

I host a book club with 6 other friends once a month. I chose the day, I know we still have unpredictable bad days but I chose a day where I have had an infusion and rest the day before to try for the best odds. I have it at my house so I am not having to stress about getting somewhere and if I start to feel bad half way, yadda yadda.

Some things still ****, I know they all see each other more often and even though they are awesome its hard to hear an inside joke and be on the outside because I wasn't there. These are the types of things that won't change so I have to find ways to cope with that feeling and not let it overtake the time I have with friends.

Maybe you could try a few different things, maybe invite a friend to keep you company during your infusion, or invite a few people over for an hour or two for something kind of specific, like video games, a movie or something else you like.

It is tough, ((big hug))

Carrie

Hi, I am also an all over the place BP and HR. I don't like to follow any rules

For me as far as HR Because my body always comes back into a normal range on its own we've decided a pacemaker is not for me right now. I have several appointments with 2 EP's to come to that conclusion, but I do know other Dysautonomia patients with pacemakers. Make sure to really talk about it and get a second opinion. Not that I thought you wouldn't

To empathize; ugh I hate being all over the place. its like one hour I am near drooling on the couch with low hr and bp the next hour I am still on the same couch but my heart is going faster with palpatations and my bp is 150/100. It's exhausting on my body to always flip around like that.

Carrie