Quote:
Originally Posted by screwballpookie
 First off I want to thank everyone for my rambling. It really means so much to me.
Yes I do have a psychiatrist and a psychologist that I see every 2 weeks for the one I talk to and the other for meds I see every 3 months. The psychologist(which is the one I talk to I think, but not sure. That is the one I and talking about) is the most wonderfullest person for me. I love her to death and wouldn't trade her for nothing. She is doing all she can to help me. I just haven't been able to tell her about my hubby yet cuz i don't see her til after the holidays so I just cry to myself and I try to do that when no one is looking. Yes I have a friend outside the family but I don't talk to her much cuz she runs a book store near where I live and that is where I see her when i go.But she is also having health issues herself right now so very hard to talk when we are both not doing to good.Don't get me wrong I love her to death and wouldn't trade her for the world either it is just hard to talk when we don't see each other very much.
As far as a support group I don't know of any around me. I will check it out.Thank you for that information. I have tried different books and I can't seem to find the right one to help me yet. If anyone has any names or ideas please help me by sharing them with me. i would greatly appreciate it.
As far as MRIs I can't get that done now because i have a scs implanted in me. I can't and haven't been able to use it for a long time due to the fact here just before I started having back trouble I tried to get the scs reprogrammed again for what seems like the umpteenth time now for along time. I had it put in in Dec. 2006 and havent been able to run it since Feb. 2007. i had a car reck then where my daughter and i got rearended by a teenager after my daughter had stopped for a bus. my scs hasn't been right since. I went to my pm doc the day after the accident knowing that there was a chance that my leads were jolted cuz the night before when I got home I turned it on and I wasn't getting stimulation where I should have. They reprogrammed the next day and it seemed ok at the office but when I got home it didn't seem right. I can't explain it. I haven't run the scs ever since. I kept calling the pm doc about it and evey time I turned around I was having to go and see the woman from medtronics to try and get it reprogrammed and it seemed ok at the office but when i would get home and turn it on it didn't seem right everytime. I couldn't figure it out. Well just before my back prob I had tried to get reprogrammed again and everytime she would try to reprogram it I felt like it was going directly to my spine and it was burning my spine like crazy and I would tell her to shut it off and tell her what was going on and I finally was sent to see my pm doc again and he did some special what he called mri on my leads and found out that my leads are not on track that they have been moved. They need to take out the old ones and replace them with new ones cuz of them being what he said in records twisted and moved up by the neck area. THe office sent an approval letter to wc to get wc to approve it and it has been well over 3 months and still haven't heard anything from them so I still sit with no replacement and no running of the scs. I don't understand wc approved of getting scs implanted but they won't approve of the upkeep? What the heck.
For my back I think my pm doc called it something to do with neuropathy sometheing. Can anybody help me by explaining to me what the word neuropathy has to do with my lower back? I don't understand what that word is.Is that a bad thing in my case or not?Is it another way of saying I have something else wrong because of this monster rsd? I am so scared with everything.I know i shouldn't freak out but it just seems that everything is bombarding me at one time and I don't know if i am strong enuff to handle it all. I am really trying but I don't know how much more weight my shoulders can handle.
I am so sensitive to so many things lately. Is that normal? I feel like a big bawl baby. Especially when I seem to be rambling on and on about my problems when you all have your own problems. I am so sorry. I guess I am just hurting so bad right now.
To know that my family don't even want to try and understand what is going on is very painful. They are suppose to be there through thick and thin so I thought. I have been no matter what my problems have been and are today,but I just got to the point where I can't take it anymore. I have tried to send my family information on my disease but whether they read it or delete it I don't know. I just know what I heard and they just don't understand so they are giving up on me. My hubby hasn't given up completely but I don't feel he loves me anymore. I just want things back to what they were before i got hurt. I know I can't have that I am who I am now and it scares me.I am so afraid of losing my husband and then having nothing. I will have my daughter because she is really trying to understand but she shouldn't have to babysit her mom. She is just 14 yrs. old. How fair is that to her? I just want back what my husband and I were like before I got injured. I just feel like emotionally he is not there but he says he loves me. Like I am so sorry for rambling like this I just feel like I am a complete mess and don't know how to get back on track so I am not so angry with my disease.I keep dropping things and I just tell my self that I am stupid or I will just blurt out "Stupid hands why did you do that? You are so stupid" How do I get back to who I was before not who I am now? Is it possible? I don't know anymore.
Thanks for listening to me rambling on. I just don't really have anyone else to talk to. I need some help and all of you seem so knowledgable and so helpful. I don't know what I would do without you.
AGAIN I AM SO SORRY!
Sincerely,
Tracy the mess |
Hi Tracy,I am so sorry you are going thru this. Getting RSD and all the physical emotional changes that go with it, is a huge adjustment. You are still you-the same Tracy. You now have limitations, pain that wears on you. but their are coping skills you can use to be happy. Happiness is an inside job, not dependent on external circumstances. It's called the ''peace within'
If you are a spiritual person, you can pray for peace and joy, the fruitage of God's spirit Galations 6:7.
There are books that helps us with communication skills. The way we communicate is so important. It can make a difference from the other person receiving our message and really receiving it, or rejecting the message and viewing it as criticism. There are even classes at community college -interpersonal skills. An example would be, "when you stay away from the house, I feel lonely and really miss you." Instead of saying something like-You don't like being around me anymore-I hate that.
You are grieving just like someone grieving that last a dear marriage mate or friend. Your are grieving for what was-what you used to be like, what your marriage was like-the things you loved to do together. Perhaps, you could journal those feelings down and cry, Look for the things that you could do together NOW. If you don't like basketball and he does, learn what the game is about and watch it together-have a pizza basketball night.
Losing your hand skills is terrible- I couldn't cut my own food. or zip my clothers or botton things-peel potatoes etc. 100 treatments of physical therapy, massage therapy, including massage therapy helped me get half of the use of my hand back. Can not cut my food, dress myself, prepare potatoes etc. There is a book out Always Looking Up by Michael J Fox- he has MD and it's all about his adjustment and optisim and gratitude. He wasn't that way at first-he drank and felt sorry for himself. Now he travels, gives lectures and helps others to adjust to their circumstances.
It's tough on us and tough on our families. My daughter and I playd tennis 5 days a week, tournaments, water skiied, snow skiied, traveled to many countries and now I have full body and in a lot of pain. After 15 years-still mobile, stretch, desensitized, grateful for so many things. It's not the same with my husband, I used to run our business, but my memory inhibits me doing that. I am limited in driving due to medications. We used to go to Maui every year and water ski all summer and Arizona has a long summer. Our daughter misses our water and snow skiing days. She was 15 when I got RSD following breast surgery, benign. She is married now and her hubby does all those things =he's a doll. They have done a lot of research themselves on RSD and encourage me to keep active. He is a pilot. I've started my own business I can do from bed a lot and visit people when I feel like it. So that's been really encouraging. I see a psychiatrist that has been wonderful. When my parents died back in '73 & '81 I got into counseling for 2 plus years and helped so much.
Something extremely important to take care of is any legal issues regarding the car wreck, when you were rearended. Your SCS not functioning correctly since that accident. You need to get that documented and have an attorney handling that for you. The issues from that wreck may not even be manifest now. Not to scare you, but some people get body wide spread from SCS surgery. Are they wanting to re-do your leads? This disorder and meds are very expensive. WC is terrible to deal with. A private insurance company from an accident would be much better to deal with, if your SCS quit working because of the accident. My daughter is a court reporter and she see's it all. Sad, but true.
I read a book called, You can't Afford the Luxury of a Negative Thought " by Peter McWilliams. Besides journeling, music can lift our mood, candles, painting-even paint by numbers LOL. Writing friends, calling friends, Distraction is huge to help us get thru each day.
I'm 61, hubby 72, daughter and son in law 30. We have lived here 12 years in Arizona, have friends visit every year from Oregon, Washington. Keep in touch, we all need each other-your friend-loretta with soft hugs
