[HeidiB]

Hi All,
Its been awhile since Ive been on here or posted I just havent felt up to it or really felt up to doing much of anything these days honestly. The past few months have been tough the pain has become so horriably bad from head to toe I just want to scream & I do my fair share of just breaking down in tears, most of my time is now spent in bed because its the only place I can be somewhat comfy. I only last a few minutes in a chair or sitting position before it starts setting off a ton of pain down my legs & up my back then I start swelling up too same thing if Im on my feet for any period of time I do my best to try to be positive but after more than 9yrs of having the RSD & all the hell that come along w/it Im running out of positive. I got another denial letter from the ssi office last week so thats
the 2nd denial Ive gotten since I got a lawyer so now I hav to go before a judge to appeal my claim & what makes me soooo mad is the ssi office told me they wanted to either wait til after I see my doc or Id see a doc they send me to before any decission was made yet with in a few days after their call w/me I had a denial letter we r so what happened to a doc appt is my question & I swear it was the same guy I spoke to last time the ssi office called & the same thing happened, with in days I was denied...its just not fair & Im so frustrated with everything I just dont know what to do anymore I feel so alone, everyday is a silent fight through the pain, through the frustrations the emotions etc. ok Ive gone on long enough sorry for the rant & any misspells did this from my phone which isnt easy..happy new year everyone!

[MelodyL]

Hi there, Sorry you are in such pain. I wish you well and I hope you get a favorable decision.

Melody

[Rrae]

Thank you for the update. I'm sorry you've been denied and I feel your frustration. If only 'they' could really see what our lives are like from one day to the next, and how very real the pain is. I know it feels like a slap on the face to get a denial letter, especially just after you spoke with someone.
Hang in there and be persistent. We're always here, so bring your tears and anger here. We all get it.

Caring
Rae

[HeidiB]

Thanks for the post, yes it does feel like a slap in the face for sur next step is goin before a jydge to try n get ssi/dis. Im glad to hav a place to vent, a place that I dont hav to feel as alone & hav people who can 1000% know what Im dealing with from this rsd.
Thanks again feel free to email me if u ever need an ear :+)
~Heidi~

[joby7165]

Hello Heidi, I understand your frustration. I've had mind bending migraines for a year from a concussion and like rsd too many people don't understand how disabling they are. I just fell recently and was diagnosed with CRPS so just hang in there and we can rant together

[aaronjaffe]

[Apologies in advance for the profanity at the end. Please understand I am someone who only uses it when I feel it helps better express a point and the emotion behind it.]

Wow, 9 years I can only imagine. I've been dealing with similar issues for a little more than a year... even so, hopefully this will give you a little pick me up ...

I like to think of myself as tough, but I hit a big breaking point mentally last month. I have a very high pain tolerance, and have managed to more or less function at work. Ever every other minute I spent in bed.

Then on December 23rd I was driving myself to the airport to go see my family in Denver for Christmas. The pain was already kicking in bad, and it was tough to concentrate. As I struggled to concentrate on the road, I was also trying to figure out how long I could last on a 4 hour flight, if the attendants would let me lie on my back somewhere if it got bad...what would happen if it got too bad, I passed out, and was unconscious when the plane arrived. Then came the realization that I'm only 31 and this it what my life had come to.

I started crying uncontrollably. Fortunately I manged to pull off on the side of the road before I got in an accident. It took three times calling my parents and hanging up before I could make words. Probably about 5 minutes before I could get a coherent sentence out and tell them I wasn't coming.

I made it back home, but was in bad shape mentally. Anyone on this board knows exactly the kinds of thoughts that were going through my head. But then something else hit me. The pain was bad, but it hadn't gotten significantly worse in maybe 4 months. Spending Christmas alone, lying on my back, staring at a ceiling that I can't begin to express how sick I am of looking at ... this was the worst it was going to get. And if I could get through the worst, I could make it until it got better. And it would get better, because I would make it get better. That second my whole mindset changed.

**** this. **** this pain. **** my victim-why-is-this-happening-to-me mentality. The pain was not abstract anymore. It became a thing. It's a thing that wasn't part of my life, and I'm going to go after it relentlessly until it is no longer a part in my life. If that means going to every doctor I have to until I get an answer I will. If that means fighting with my insurance company to see those doctors I will. And **** all the ineffectual doctors I've been to. If I have to direct my care myself, push for new answers myself, until I can find a doctor capable of doing an exceptional job then I will. If I go to every doctor I can, and all of them from the Mayo Clinic to Johns Hopkins tell me there is nothing that can be done to make it go away .... then I will take a deep breath, I will push until I find a better way to manage it, and I will outlast it until they can grow a new spine out of stem cells and surgically insert it using ******* nano-robots.

I know, big words from someone who has only been dealing with this for a year and two months. But here's the thing... as soon as that mindset changed I started pushing hard. I'm also lucky. I'm a state employee. I don't make much the health insurance is excellent. I started setting up appointments. I started looking at it diagnostically. What will this tell me? Ok if that doesn't work then I will know know this, and I will already have appointments b, c, d, and e scheduled. I've made more progress in this last month than the entire year prior. I have gotten better. I'm still struggling, but if Christmas was a 10 I'm back down to a 6. I also feel like I'm honing in on answers.

If I'm not then I'll find a way to get to Mayo or Hopkins. If that doesn't work then the nanobots. But if I was already at the worst, then it can only get better.

Your situation sounds horrible. But it can get better. You can find the strength. Keep fighting, keep appealing. You are strong enough to make it better.