-
Posts
169 -
Joined
-
Last visited
Content Type
Profiles
Forums
Events
Resources
Physicians
Member Stories
Information Resources
Links
Everything posted by 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.
-
Ports, Scheduled Iv Fluids, And Low Blood Volume
CarrieJessica replied to trice125's topic in Dysautonomia Discussion
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
-
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 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
-
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
- 6 replies
-
- dysautonomia
- awareness
- (and 2 more)
-
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!
-
And I'm Back - Some New Symptoms : (
CarrieJessica replied to margiebee's topic in Dysautonomia Discussion
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