I Need To Stop Reading

Stella Johnson

Active Member
Since I got the RSD diagnosis I have been doing research. The more I read the more scared I am. Many people can't work any more after a while especially if it spreads.

I can't believe what a mess I am. I don't think I was this depressed even when difficult child was going through her worst times when she was younger.

I can't do anything I could before. Never realized how much I used my left hand. My pinky finger is still curled and won't extend. Still no feeling in the ring finger, and constant pain all the time in my entire hand and wrist.

The medications help take the edge off but pain is always there. I'm still working part time at work for another 2 weeks. I wanted to try full time next week but it is impossible. No way I could handle it that long. My hand is killing me by the time I leave work at noon already.

I found several message boards for people with RSD. Seems most of them are on SSI now and can't work. I don't ever want to be on SSI. I'm scared to death. I couldn't even make my house pmt on what SSI pays. Not to mention my difficult child has to have health insurance. I'm not good at staying home. I get depressed. I need to work. I need to be out of the house but at the same time I hurt too much to do anything.

My hand is so weak I can't even open my own prescription bottles. I can't hold a soda with my left hand. The coldness sends shocks from my hand to my shoulder.

I called my attorney last week. He gave me a malpractice attorney's number. The malpractice attorney said I definitely have a case but because it is malpractice they are hard cases because of the new rules. Remember when they passed all the new laws for getting rid of "Frivolous lawsuits"? Well, all they did was help the doctors almost never have to pay for their mistakes. It takes an act of congress to even file a suit. I'm going to see him this week.

I'm scared that if I don't win, I won't have enough money to support us if I am unable to work later on. I'll lose everything because of this.

Anyway, thanks for listening.

steph
 

Hound dog

Nana's are Beautiful
((((hugs)))))

I can't blame you for being scared. I hope the lawyer can ease your mind and you have a good case. If the stupid doctor hadn't messed up, you'd probably have use of your hand with only minor issues.
 

susiestar

Roll With It
I am so sorry. Please seek out a pain management doctor or rheumatologist to help you with this. One of my best friends from college has had this since her teens. She works full time for Dillard's, is NOT on disability or SSI (if you file for one of these it should be disability first, I think), and sees the same rheumy I do. He prescribes medications for days when the pain is really bad, other medications for days when the pain is lesser. He also has her on lyrica to help with this.

I hope that this gives you hope. My friend went to college full time AND worked 70 miles away full time in a retail store. Then she graduated and worked for a law office as a paralegal. Didn't like that (too many lawyers, lol) and went to work for Dillards as a salesperson. Was the top salesperson in her STORE many years, then became store secretary a couple of years ago. She refused management because it didn't pay as well as being a salesperson, and as secretary she can still get commission when she fills in on the salesfloor.

She also is active in other things, though she has no kids of her own she is helping a good friend with a difficult child.

This is a tough time. In time your body may calm down. I think you DO have a great case for this is clearly malpractice in my opinion. I hope that my friend's story gives you some hope.

Susie
 

house of cards

New Member
I am praying that this situation can improve, I just wanted to say try not to get to worked up with the on line boards because if the RSD isn't severe, they aren't posting at the site. ((HUGS))
 

Lothlorien

Active Member
If it comes down to going on SSI, your daughter will also qualify and she would qualify for healthcare through your state. I hope that's not the case, but that is a worry that you shouldn't fret about.

Are you getting physical therapy/occupational therapy?
 

Shari

IsItFridayYet?
Stella,
***
Please remember that the vast majority of folks posting on the boards are probably NOT going to be the people who's lives haven't been drastically affected by this disease. You're probably reading worst case scenarios.
***
I was told I had RSD when I was 28, after knee surgery. It took a long while to find a doctor to treat it accordingly, but when I finally found a doctor to deal with the symptoms that I had instead of what I "should" or "shouldn't" have, my daily functioning improved drastically. He used a combination of anti-inflammatories, steroids, and pain medications, all taken daily whether I "needed" them or not, to break the cycle, and it worked. I still have pain, sometimes swelling, but I beleive the pain I have now is simply from the arthritis.
***
Anyway, try not to panic. Find a good doctor who will truly work with you where you're at. I think they can do a lot for your quality of living.
***
Hugs. You are in my prayers.
 
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trinityroyal

Well-Known Member
Steph, I'm so sorry.
I hope that your conversation with the malpractice lawyer is fruitful, and that your docs are able to help with pain management and regaining range of motion, strength etc.

Saying prayers and sending hugs,
Trinity
 

Star*

call 911........call 911
First......breathe. This is a one day at a time diagnoses.....so lets do just that and we'll take it one day at a time with you. (even though we dont' suffer your pain we feel for you) so let's look at what you DO have.

1.) Good friends who will /do understand.
2.) Progressive doctors
3.) An attorney that WILL find something to sue Dr. knownothing over.
4.) A good hubby
5.) Except for RSD - good health which will help
6.) A friend who makes lists for you:tongue: not necessarily helpful, but still
here for you.
7.) The ability to FIND a good Pain Specialist. DF sees one once a month. While I dont like his choice of doctors and call him Dr. Ahole - I think his name is Awhoal or something like that - I still call him Ahole. I think as a dr. he had some proceedure done to deaden ALL his sensitivity. ALL of it.

8.) This list - no that does NOT count twice.....#6 is a friend who will DO a list...#8 is the list. Separate yet equal.
9.) Your other hand.....huh...aren't we being a little hard on the other hand that is DOING all the work? How about a manicure for the hand that is doing all the work while the injured hand takes a small vacation.
10) SSI? You're thinkin about SSI - OMG I'll send you migraine medicine..you think your pinky hurts? OY...OY....Oy vey!

and finally - http://www.neurologychannel.com/rsd/index.shtml

This seems to be a good source of information......and do you know what the #1 cause of stress is in unwell patients according to my Doctor? Who is sooooo flaming gay and sings Barry Manilow songs in the hall, while you get a pap - but is just brilliant and has a 10'x6' golden guilded wooden obnoxiously garrish frame with a portrait of his Jack Russell on his office wall? - THE INTERNET........

If you are doing research - then get a book and keep a list of the sites you go to and concerns - and dates.....and ask your doctor about it. Really really!

and....last but not least 11.) ......MY HUGEST HUGS -

Hang in there - just not by your pinky finger......okay? So lets work on getting a referral for a PT (physical THERAPIST) in SPORTS medicine (I swear they are SO much more informed) and get a PAIN MANAGEMENT DOCTOR lined up - one call does it all.....hugs

AND IF I HAVE TO I WILL COME BACK HERE AND YELL AT YOU....lol. ;)
 

Stella Johnson

Active Member
Thanks for the prayers and good thoughts. I need them.

Susie,
I hope mine doesn't spread. I'm glad to hear your friend is doing well. It does give me hope.:D

HouseOfCards,
I know what you mean. I stopped reading them. It just scares me more.

Lothlorien,
I am in occupational therapy. Probably will be for a long time.:sad-very: Therapist made another brace thingy I have to wear during the day. I have another I have to wear at night to try to straighten my pinky finger.

Shari,
I'm glad to hear you are doing so well.

Star,
Your lists are too funny.:D Thanks for making me laugh.
I found the neurology website a few days ago. I like that one. One day at a time...
I'm sure I will need someone to yell at me once in a while when I start having another pity party.

You guys are wonderful.:alien:

Steph
 

TerryJ2

Well-Known Member
Steph, so sorry to hear about this. I had to look it up online. It's great that there's a website and support group.
One day at a time sounds like a good plan.

Star, I love #9. LOL!

Good advice, Steph.
 

DDD

Well-Known Member
Steph, I think you need to remember the Serenity Prayer. Most of us think in terms of substance abuse with that prayer but it is totally valid when facing any major problems. I'm sure you will have the serenity, courage and wisdom necessary to avoid unproductive stressing. Hugs. DDD
 

Stella Johnson

Active Member
DDD,
You are right. I do need to remember that prayer.

Star,
Of course you were invited.:D

I had the nerve block today. The pain is sooo much better now. The doctor said I will probably need 2 more.

The needle goes in your neck in the front and I guess it messes with- your vocal cords. I have no voice. doctor says that almost always happens. All I can do is whisper. SO is having a blast making fun of me.

steph
 

susiestar

Roll With It
I am glad the nerve block helped. and that you have a SO to help, even if he is making fun of you! I bet difficult child is having fun while mom can't talk - my kids always love that..

Hugs!!
 

lovemysons

Well-Known Member
Steph!
I'm so sorry to hear of the pain that you're in and the situation. I just wanted you to know I'm still out here and thinking of you today.
Hugs and love,
Tammy
 

TerryJ2

Well-Known Member
Scary place to put the nerve block, but hey, it sounds like it's doing the trick! Way To Go.
Let SO make as much fun as he wants as long as you're out of pain.
 
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