My FMS is Invisible, but I'm Not!

Top 17. Oct 22, 1998 5:21 AM

» MorningStar - Hello Everyone - Hello Jausten ~ Thought I would post a messa

Hello Everyone - Hello Jausten ~

Thought I would post a message here, peeking in to say hello to my FMily Members. I want to say Good Luck to Becky too in her fight to win her case. I hope you win. I don't know if you or the other newcomers to FMS know about SHN - Sapient Health Network, but it is a great place to get information. It is located at: Sapient Health Network.

I was at SHN last week checking out their new look and found some really good information that I am going to use in my fight for disability. Someone posted a copy of what looks like a brief to an Administrative Law Judge - do you know the one I am talking about Cynthia - that you can get a copy of and put in your folders there at SHN for future use. Make a copy of it and give it and anything else you find at SHN when you do a search for more info, to your lawyer. If you have not been there, sign-up as a Member so that you can access all the features there.

Things have been pretty rough for me lately too. But I am hanging in there. Recently I am beginning to "look" sick because of a chronic infection that just won't go away and I have been dealing with a lot of depression. So maybe I won't be so invisible to everyone now. Isn't it terrible that we must "look sick" to get the help we need?

I am also having a difficult time getting my GP to call me. I must be like the last one on his list of people to call I guess. And I rarely bother him. *G* When he does finally call me, I am going to ask him once again if he has the time to be my doctor or not.

Why must so many doctors be this way with us? I have a pain doctor now, thank God, but before he helps me further I must go next month to see a Neurologist to pin-point the exact location of the nerve damage, so they will know exactly where they are going to operate on my spine. Little do they know this is where I believe that I am going to draw the line. I don't know if I am going to allow them to operate on my spine or not. But I may change my mind. I will just have to wait and see what their findings are and how I am feeling about things at that time.

Cynthia - I have missed you. I want you to know that soon I will be answering your last letter to me, which I know it way overdue in being replied to. I am sorry dear friend that I have not written back in some time. Things around here have been challenging, to say the least. I am just now starting back answering my email and now posting messages once again here at the Suite. My mailbox is full of unanswered letters, so I better get to it. :o)

Hang in there everyone! Take each day one second at a time. This is how I am learning now to manage and cope with all the yuckies going on in my life. And a lot of prayer, which also helps me get through the really tough times.

I wish each of you every happiness in life and the blessings of better health always. May we all be victorious in our fights to get the help and support we need.

In Friendship ~

<*)))><

<img src="/userfiles/3295/morningstar1.gif" align left> Desra Dawn Morning Star

Editor: Health and Nutrition Click Here To Get Healthy!

-- posted by MorningStar

Top 18. Oct 22, 1998 6:48 AM

» Dan_Ellsworth - Comments on doctors from outside the fibromyalgia "club": More

Comments on doctors from outside the fibromyalgia "club": More important than specialty is whether the doctor actually communicates - two ways. I like a doctor to explain things to me - and hear me. My main doctor is an internist, but more important, we can talk. When I need surgery (fortunately, rare and not serious so far) I want to know in advance what will be done, and why; and what to expect afterward for how I'll feel and function. A doctor that is willing to admit that some things are unknown is one I'd favor over one who has every answer all packaged and tied up with a ribbon.

It's good to have a network of FM-aware doctors, but in case you can't get to one of them, you need some doctor-checking skills to get the good new ones or nearby ones. The medically-untrained can check the communication factor. That's not a direct indicator of medical competence, but the doctor who communicates carefully and respectfully probably is not covering ignorance or apathy.

When Matthew (2nd son of 3, 23 then, visiting us at a New York campground this past summer) got something that looked like appendicitis - but not exactly like it - the doctor who eventually did the surgery actually seemed to be thinking out loud in front of us all - and by the time he decided to operate, we all (Judy, me, Matthew) had great confidence in him. We knew he was decisive but not hasty, weighed many factors, and didn't pretend to know more than he did. His "bedside manner" was not a matter of smoothness, but of friendly directness of communication. The surgery was effective, and Matthew recovered fast.

A good doctor, as described above, is a prize - as is an excellent auto mechanic, but that's another story.

Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"

-- posted by Dan_Ellsworth

Top 19. Oct 22, 1998 4:15 PM

» MorningStar - Amen to all you said Dan. I whole-heartedly agree with you. And

Amen to all you said Dan. I whole-heartedly agree with you. And doctors as you described, are very hard to find. At least that has been my experience and that of many others who are diagnosed with this illness.

Since many doctors have yet to fully recognize and/or accept that FMS is a true illness, those of us with FMS/Chronic Fatigue Sydrome, Lupus, etc., go through a lot of stuff to get any help at all with our illness. This is one of our major complaints. It is totally frustrating. It seems everywhere we go, we are treated like we are crazy and then told by just about everyone in our lives that nothing is wrong with us.

Perhaps it is difficult to find a good doctor like you have described, no matter what type of health problem you are having. The one you spoke of is exactly the type of doctor I would LUV to have. He sounds so perfect. It is good to know that doctors of this caliber do still exist.

With Internist being mention twice in the past few posts, this has me thinking that maybe we should be looking more closely at them and not rheumatologists to help us treat this illness. Hummmmmmm........need to investigate this further.

Cynthia, since you are a nurse, what is your opinion concerning Internists vs. Rheumotologists as our primary physician, to help us in our fight against this illness? Do you mind sharing your thoughts with us on this? Thanks.

C~ya on the flip-side!

For A Healthier Today!

<*)))><

<img src="/userfiles/3295/morningstar1.gif" align left> Desra Dawn Morning Star

Editor: Health and Nutrition Click Here To Get Healthy!

-- posted by MorningStar

Top 20. Oct 22, 1998 9:16 PM

» ______MarcellaGM - Becky, I wish you luck on your workmans comp. claim. I'm still

Becky, I wish you luck on your workmans comp. claim. I'm still so angry by how I was treated by them and my longterm disability carrier, Standard Insurance. The terrible thing is that the only way I will ever feel like I am on the road to wellness is when I can 'let' go of that anger. I certainly hope you win.

Betty, I'm not feeling very invisible these days. In fact I feel like I stick out like an open wound. Maybe some of it is in my imagination. I feel that I must look to others how I feel physically. And yet, I passed a mirror today and I swear I looked younger. My cheeks were even rosey and I will be slow to grey like my Mother and Grandmother before me. How can that be when I feel so old and crippled? You would think the pain would cause my face to crease into thousands of tiny lines. By the way, I will confess to being 56 years old. I guess that is what you mean about the invisible sickness.

Desra, I have just joined SHN. I haven't fully explored the site. I will have to look around. I am still fighting for Social Security Disability. It took me a very long time to apply for it. I kept thinking I would get better. I even felt guilty. Not anymore! I could use any information I can find. All my doctors say I suffer from depression. That may be true to some extent, pain and weakness can make you feel pretty low, but in many ways I feel alarmingly sane, like the guy in 'One Flew Over The Cuckos Nest.'

Daniel, I'm going out and find myself a good auto mechanic, er, doctor. LOL. Marcella
Pacific Northwest Garden

-- posted by ______MarcellaGM

Top 21. Oct 23, 1998 6:10 PM

» TvBabe - Marcella a word of advice about SHN, stay away from the message

Marcella a word of advice about SHN, stay away from the message bases and the chat room. Unless you want to be given incorrect information. Stick to their libraries and News articles and you'll do fine.

Michelle

Contributing Suite101 Editor : Disabilities

-- posted by TvBabe

Top 22. Oct 23, 1998 7:11 PM

» Jausten - Becky, I hope things work out for you with Worker's Compensation

Becky, I hope things work out for you with Worker's Compensation. I know of one case here in British Columbia, Canada that was won against WCB based solely on FMS. But when I was on WCB, they just ignored my FMS and only focused on my multiple back injuries.

Betty, Judy is right. Get a new doctor. I could be dressed to the nines, and my doctor would still ask me how I'm feeling, and if I'm having pain. And he would even check my tender points if necessary.

Desra Dawn, Thanks, and I hope things settle down for you soon. Personally, I have a GP and a chronic pain specialist, but those are rare to find. I'd suggest an internist over a rheumatologist if one lives in the lower mainland of BC. But some of the American researchers are rheumatologists. I think Dan is correct in saying that it depends upon the physicians skills, communication skills, and just how open he/she is to treating someone with a chronic illness. Doctors like to fix us..some what like an auto machanic..but patching us together just doesn't work with our condition.

Marcella, Well, I'm 51, and today I feel about 151. My sleep is messed up again, and I'm exhausted and irritable most of the time lately. I don't really look any different than I did several years ago when I was working. In fact, I've been told that I have less lines in my face....less stress from working, I guess. And whether I fix my hair and make up or not doesn't seem to make much of a difference unless I'm dressing up. Then my family suddenly thinks I'm well and able to leap tall buildings..or do whatever they want..*g...

I have to agree with Michelle about SHN. I am a member, but I don't use the chat rooms or even read the message boards. In fact, I do not recommend SHN on my links or on my personal site because of all the conflicts that have occurred there due to people judging and telling others how to live their lives and even what to take or do for their pain and fatigue. I'd enter SHN cautiously, and not believe everything that is either said or even what you read. The articles and library can be useful, but the number of battles that I've witnessed on the message boards and in the chat room are too stressful. The problem is that these things occur on email lists, other chat rooms, and other message boards..so it isn't just SHN. Maybe we are so desperate for support and validation that what we have is real that we jump in and get trapped in online battles. But there are some very good people at SHN. I suppose if there was a regular chat room here, or a regular message board the same thing would happen. But, in the case of Suite 101, and a FMS chat room or even a main message board, I'd be in control..*g.......And I don't put up with major conflicts. I go on strike or let my Irish temper come out..*LOL........

Cynthia
Jausten

Suite 101 Contributing Editor: Fibromyalgia

-- posted by Jausten

Top 23. Oct 23, 1998 9:57 PM

» BettyM_4 - Thanks, Cynthia, Judy, Marcella, and all who have made pertinent

Thanks, Cynthia, Judy, Marcella, and all who have made pertinent comments - gee this is a great web site! I don't mind repeating myself on that. I AM going to find a new doctor and now that I've whined to enough people I feel validated. I AM sane, it is NOT all in my head...cyber best to everyone!

-- posted by BettyM_4

Top 24. Oct 23, 1998 10:26 PM

» ______MarcellaGM - Michelle, Cynthia, Thanks for the warnings. I was thinking

Michelle, Cynthia, Thanks for the warnings.

I was thinking about the 'picture' of health image we give to the public. Dispite all the pain and weakness, I have noticed that I have not had cold in several years. My family, a husband and two teens, get colds on occasion but I seem to be immune. Marcella
Pacific Northwest Garden

-- posted by ______MarcellaGM

Top 25. Jan 3, 1999 12:13 PM

» Ginger1 - Betty- I agree with Gmaduck

Dear Betty,
I also had an unfortunate experience with a rheumatologist before I found an internist at
Cleveland Clinic Florida who specializes in pain
patients. He is willing to listen, try new meds,
treats me like a colleague, and his nurse is also
very empathetic.
All the docs and nurses at CC/Fl are very aware
of FMS and its impact on their various specialities. There has to be someone out there for you. Dr. Devin Starlanyl is in the process of
creating a database of user friendly docs. Her
books are also great-it's like having a doc in
the house. You can order them through amazon.com
at a discount. Good luck and blessings to you

-- posted by Ginger1