First visit with new GP

January 2, 2014
The long anticipated wait till the new year for health insurance and to see my new doctors is over, thank goodness!! 


Old X-rays taken, my first meeting with my GP went well. Got lots of new orders and referrals.
It was very overwhelming for both of us. He probably mentioned it four times. But he “likes a challenge” his words exactly. I just kept apologizing I couldn’t keep the tears away neither could mom.
He is going to do some research and talk to a friend of his that’s wife has EDS. He says for sure I have a connective tissue disorder and not fibromyalgia maybe marfans but he dosnt hear a murmur so that’s good news. I still strongly suspect EDS with marfanoid habatius.

Here were his orders from today
-Echocardiogram 
-Support hoes :)

-New endocrinologist one door over instead of 300 miles away. 

-Convinced him to take new labs since it’s been years and SOOOO much has changed in that time. 
-Referral to Physiatrist for bracing :)

-home health program, to learn all about different options and to get mom listed as my caregiver she’s already certified and already takes care of me. 
…..um I think there was something else. I forgot.
 He said I’m obviously disabled and I think he’s gonna help me with this… I hope.

He took notes about the Venus reflux prescan and tilt table test.
Laughed a bit when I asked about a micronutrient panel. So oh well. It was a long shot.
I gave him some lit on POTS since that’s what we are focusing on that and the Venus pooling. And he asked about for it. I also through in the Alan Pocinki JHS paper too. Hope he can handle all this! Plus ya know my massive document probably 15 pages a fucking novel on my history and the year and symptoms-he said he would have liked this prior to the visit. :( oh well. I learned, I didn’t finish it till Tuesday!
I think this is the start to a interesting journey for sure. So glad to finally have kickstarted everything into gear.
See the geneticist in a week or two, will call Monday to find out when he thinks he will be down here.
And the rheumatologist is February. Which the GP says he’s not gonna be nessisary. So that’s good, one less doc.
Will see him again he said in a month but I asked and he said after his will work. I probably should have scheduled for February 4th but went for March, I think I’ll be in their before that though. I’ll call.
Also made some returns, dropped off a couple cards, spoke to a bestie whos coming over Saturday yay! saw my mechanic for a min :( sad news his dog died last week :( RIP Taylor. And I picked up my old head X-rays and knee MRI disk.

Good day just reasting now

. But at the hospitol I nearly had a panic attack. My body was giving out and breathing got so difficult but I finally made it up to radiology and a lady put me in a wheelchair for intake and I calmed down but my body kept rocking in the chair. And my bad knee that pain that I thought was getting better , it's not now after the hike around the hospitol today!

Goodbye 2013 and good riddance

The end of 2013 thank god

As 2013 comes to a close I can’t help but reflect on the past year and look forward to the year to come I truly cannot wait for 2014 its so close I can taste it! 

One of the saddest things that is hitting me so hard this evening is that my godson was born in December last year I held him as a newborn and one other time. Both were very painful for my arms and I’ve physically only gotten worse all I wanted To do was hold that little munchkin tonight give him a great big hug but I can’t risk more damage to my already messed up body I’m in so much pain and he’s just so precious. I don’t want either of us hurt from my misfortunate situation. So all I could do was look as they played and tickled him, fed him and “made him fly” threw him over daddy’s knee. It was wonderful so see him, but that all I’m watching. It’s okay. I got over it. It’s got my health and welbeing. But it’s still sad.

This whole year has been sad. From the moment I wrung in 2013 working my ass off at 711 to tonight, there have been scant highlights this year.

But here they are!

JCKS: my four best friends! These girls can always but a smile on my face and are truly the BEST, life ain’t worth living without them. I am so lucky to have such an amazing, supportive, thoughtful, caring, tolerant and loving group of friends. Thanks you guys. So much loves <3 

My amazing mother of course. Who I couldn’t not have survived this year (or any year ) without! Mom your the greatest! You are the extension of body that makes everything happen in our home. Thank you

Chronic pain support group: this group has been very helpful in helping me see the long term effects of chronic illness and is a huge factor in building my health care plan. These ladies are older, wiser, and very sick and in pain, but they welcomes this you gin in with open “air” hugs and we all get to moan groan and grip together as well as help find local health professionals who will work with those like us. Also has given me a gimplse into what life will be like when I’m on my own. Now I know what I really need to prepare myself for.

Wedding bells: One of my besties got married and pregnant! (I was in the wedding party with was nice, but took me over a month to recover, and have been apart of the pregnancy dramas all through… She’s six months this week. 

Went bankrupt: We filed bankrupatcy FINALLY (this was today:) this is a long time coming, all sorts of complicated stuff from when my father was alive. 

And the biggest things this year was I found this community and pretty much discovered why I’ve been sick my whole life! 

Tumblr diagnosis 2013! :) it’s a new one for sure but thank you so much rainbowrosepetals for nudging me in the right direction without you and help from so many others on here I would still be agonizing over “what the hell is happening to me!?” Now I have more answers and I’m just asking “how am I going to live like this, what can I do to make life more manageable?” 

And last but certainly not least. The weight. All 60lbs of it Goodbye and ne’er shall I see you again. 

 Oh I forgot something I’m building a bond/relationship with someone who once was just my very sweet mechanic and now we are friends and have so much more going on (non romantic, more medical;) I’m glad mom made a friend in his mom too. 

 So the year wasn’t so bad. I mean I didn’t list all the bad things cause there are far too many but looking at the highlights is was a decent year.