Living life with multiple chronic illnesses…. and some other stuff!

Category Archives: SSDI

It’s sure has been quite some time since I’ve last posted.   Things have been absolutely crazy on my end.  Still trying to figure out a good pain management.  So far: Ultram ER 300mg, Ultracet 37.5 every 4hrs as needed, Neurontin 300mg 3x Daily, Cymbalta 60mg, Valium 10mg every 4hrs as needed, Ambien 10mg at night (and I still don’t sleep more than a few hrs between the neurontin, ambien, and valium).  I’ve changed PT’s because the first one was pushing me too hard and I ended up hurt after every session.  The new guy was really good.  Was with him for about a month and a half–then, no insurance.  That’s right.  I don’t have medical insurance anymore.  

After a day of freaking out and sobbing about what will happen, neil, my mom, and my shrink, came up with a game plan.  I am working with a lawyer who is taking care of all the paperwork, even the medicaid that is separate from SSDI.  I am so grateful that he is offering to do everything  for me.  
I contacted my primary care physician and explained to her my situation, she said that she will talk to both my psychiatrist and my pain dr, to work on a better pain management that won’t interfere with my psych issues.  She also said that for the brand name meds I could get samples.  The generic stuff I could go to walmart, they have the $4 dollar script program.  I think Rite Aid also has a program (that’s where all my stuff is, and they know me).  
My Shrink is going to work something out  for me.  Phone sessions for a bit, until I figure out my financial situation and if I need to come in to see her she’ll give me a decreased flat rate.  It sounds doable.  Especially if I get the state program stuff to come in.  The only other issues I’m worried about is the pain dr and my psychiatrist visits.  
Hopefully, things will go through quickly and hassle free, but anyone who has had to deal with the system, it takes forever.  I refilled everything that I could refill before I lost the insurance. At least for that.
As for some more upbeat things, I am really wanting to get back into art.  I think I’m going to make a new blog that is strictly for my artwork, until I get my own website up and running.  I joined a website with many tips and advice for anything art related.  The people there are very helpful and encouraging.

Good news, I’m working with my OT to relearn how to knit with braces on so that it doesnt hurt!  Whoot!  I miss knitting.  I’m a hardcore knitter, too.  I bought a knitting loom for simpler projects, but I love doing lacework and cabling.  OT really has been so helpful in the adaptation process.  I bring in different things that I want to be able to do again, and we try to figure out the best way to do it.  I have a foamy tube for my drawing utensils and paintbrushes.  I wrapped some other utensils with Cabon/VetWrap to make it squishy and easier to hold on to.  My silver finger splints came in.  They are the Murphy brand.  They don’t quite do the job.  See, I have thin fingers but HUGE knuckles.  We think that if we widen the splints a little so that there is a bigger angle, it will do what it is supposed to, as well as still fitting.  We will see next week how it goes.

I’ve been in a lot more pain lately.  PT is still really hard.  We were working on some ankle strengthening stuff and I was ok at the time, but afterwards my ankle was screaming.  We are talking about getting new ASOs for my ankles.  The one’s I have aren’t doing the job.  We are looking at the Malleo-Loc, which is a lot more supportive.  It’s solid and formed to my ankle.  Maybe having my ankles in better position will help my knees and hips a bit.  My left leg is rotating inward when i step, and the right swings.  Fun stuff.  I’m also having a lot of neck pain, may look into a soft cervical collar for doing things at home and car rides.  Not use it all the time though.  Just when I need it.  I am seeing a new pain clinic on wednesday.  I am looking forward to it.  I told PT and she knows the dr’s there and is looking forward to what they have to say.  I need to start making a list of things I want to discus with them.  Hopefully they will be able to offer something to help.  
OH!  I almost forgot.  I talked to the reviewer guy that’s dealing with my SSDI application and he said that it’s in medical review and that if I get a mental status report from my Psychiatrist I don’t have to go to theirs, which would be awesome.  I also had an updated report sent from my geneticist to him and one for my medical binder.  Hopefully that will get an answer soon!
In other non-medical related stuff, I am going to be submitting an essay/short story to a book to be published.  The book is about troubled teens.  I’m going to write about the stuff I had to deal with as a teen.  Some pretty heavy stuff.  When it’s done and you want to read it yourself you can email me and I will send you a copy.  I’ll keep you all updated on that.  I don’t want it available to anyone.  What would be the point of being published?  haha.  I also want to start putting together a book on dealing with EDS.  I have an outline made out.  If anyone would like to contribute to it, feel free to email me.  I wont be starting that project till after the first one is done.  
I can’t think of much more to write at the moment…  so, I’m off to relax and finish watching Empire Strikes Back.  Whoot

It’s been a little while since I’ve posted. Haven’t had the energy to do so. I’m stuck in a whirlwind of getting my shit together for dr’s appts, disability, unemployment, and student loans. Along with coming to grips with the fact that I have a body that is failing me structurally, I’ve been having cycles of depression and positivity… not exactly manic-depressive, but days like… ‘whoot, I got something done’, or ‘fuck, my body isn’t listening and I will never be able to work again.’ I’m getting there, though. Accepting this crap, that is. I’ve been told by many that I have been handed a crappy hand, but that I’m dealing pretty well. I’m trying to stay as positive as I can. I met with a Disability Lawyer, presented my case, and he said that it sounds like I could be approved and to go ahead and apply. So I did that today. Got all my paperwork together, letters from drs (except the one from my primary which arrived 3 hours AFTER my meeting), letters from friends, clinical notes from the geneticist, symptom impairment worksheet… everything I could possibly do to prove my case. Everything is going to be processed and hopefully I will hear back sooner than later. The lawyer said to give him a call when I found out what the decision is, and if I am denied then we’ll go from there. So that’s that. It’s done for now. I can breathe a little bit. Meanwhile, I am trying to get into the pain clinic and somehow the referral has been lost. WTF, man? Waiting to hear back on that.

Other things… I’m trying to learn watercolors… Neil’s mom is helping me out, giving me pointers, stuff like that. She’s an amazing artist, and I’m so jealous. I’ve also joined a Chick Lit book club. Ha. Right now we are reading The Names My Sisters Call Me by Megan Crane. I’m 5 chapters in. I have to say… the story isn’t horrible, but I am having a hard time with the author’s style. The main character often goes into thought/rambling sequences and seem out of place. Hopefully it will get better.


I’m starting the SSDI process. I have no idea what I am doing… I have a phone interview on June 13th to do the application and an appt next week with my primary to discuss things. Now I am working on the disability report online. It’s a hard thing to have to point out all the things you are unable to do. Not very good for the self-esteem. It needs to be done, though. I can’t live on what I am making now and bills are piling up.