[daniella]

Ok. I know this is a theme in my posts. I just don't know what to do. I feel everything I try makes me worse not better and the docs are never accountable after. On top of my inner ankle/foot/calf issue which has been in a major flare up of pain I have been dealing with an eye issue for 9 months. I have been to 25 eye apts with 6 opthamologist and started a new eye med which made my eyes way worse. Now this is after so long I am in so much eye pain. So I get very frustrated because I am left to suffer. This was like the straw that broke the cammels back.Now I am suppose to get a tunneled epidural catheter and do pt twice a day.The issue is I fear more pain and though this is horrible it is better then it was when I started here. I have many bad pt experiences that last and last.I had asked the doc what happens if I am in more pain and he was like you will be in mental therapy too and then possibly a spinal cord stimulator. He understands my pain I think but I guess I have to accept being in more pain while trying new interventions till I find the right one and I am not sure I can.He is my 4th pain doc. I want a life back but feel like giving up and just doing nothing. Just so much to face getting better with the leg and eye it seems hopeless. I have begun to isolate from everyone again and get very angry at my mom again who tries and does so much but then will say somethings that make me so mad. I don't wish this on anyone but people go about their lives and don't understand to the fullest. Yes I am loosing my mind but it has been so long so to be told that I am having some mental episode is very aggrevating.I had a little freak out meaning just getting upset and yelling and saying I am done with docs because of everything. Let me add too when this hapened with my leg and was going through the tests and trying meds/pt I was crying in pain through vicodin every few hours and in bed and no one did anything for me doc wise. So I fear that again. Any thoughts on what I should do or how I should act?Thanks for listening

[Leslie]

Daniella -

I am so sorry for what you are going through? I do beleive in god but I sure do wonder what does all this suffering prove???

[shiney sue]

I can relate to the f. legs on up,and with me hands to shoulders..The eyes SS Dry hard to see. Dan my love and you are did those 25 Eye Drs. come
anywhere near the same explanation any and did any help you in the smallest
way..I understand about how much you love your Mom,and I understand her need to have her child get better..

Would you please explain what this Dr. wants to do,has done,Guess i'm running on slow..Honey help us all,cause you much be very much afraid.
My friend Bob is fighting MG he's blind in one eye and I am at pryers his others will be better.

On the 12th I had a MRI came home feeling more than sad,thinking what good am I,why do I keep fighting.Bob said oh turn on the computer,first
a wonderful note from youngest son we have been fussing. It was his birthday
31 . I sorry I wasn't there with you,but I've got good newa,Love you he was gone. Same thing from oldest son...Then it was time to visit my grandson,
he was smiling a great big one..Gmama you be Gmama,I told him I know I was
his Gmama his..So he puts on his Mama,and I knew from her beautiful face,
Mama We need you all 4 of us,We are having a new baby in Feb.don't know if it's a boy are girl. Just know I love them and i'm needed.The grandkids will be 20 months apart..May be comng to Mich.let you know when..So explain what
that eye problem is one more time. Where would you go if you could,oh yes we decided on Haw. YORKIEMOM you got to come to,lets all go. Hugs and feel better Dan to all Sue

[lefthanded]

daniella . . . . one huge (((((((HUG))))))))) for you!

I am getting worse of late, and my eyes suffer both a condition caused by my Crohn's/chronic inflammatory conditions, lack of good sleep, and some of the meds I am on. And I too am afaid to look further, because I feel worse after every doctor visit . . . because I truly do not want to try every new drug on the market!

When I can be at the easel and paint, I am still an artist. . . but the in-betweens are getting closer and longer, and the creative sparks harder to ignite. After that. . . what?

Funny thing, though. . . my medical group keeps sending me their news letter on how they now offer spa services and will laser-remove your leg hair for you so you don't have to shave anymore. . . but I can't get seen in a pain clinic! Our health care priorities and the $$$ attached to them are all screwed up. You bet that makes me angry. But there is no money in helping those of us in pain. . . we are not glamorous enough!

Hang in there with me, will ya? Imagine me squeezing your hand when no one else will. . . .

[shiney sue]

I just got 3 offers just like your's from the spa,that sure was strange,I would laugh if my eyes weren't so day..What a world we live in. Wish we could have
a big art show,those who work in all Art forms..Even pictures of the things
we use to be able to do..Hugs Sue ,Do you have any hobbies D I know your good with people..

[daniella]

Hi. Thank you so much. Of course my "aunt" sue many hugs and I hope we get to meet. Then I can give you a real one in person.
Lefthanded that hand thought was so sweet cause do I need it today.I am sorry for all your struggles. I pay for all my doc apts and huge co pays on tests and treatments. For ex those 25 apts at 200 a shot were not covered. Or the 500 10 min pain doc apt not covered. If I got relief that would be one thing but coming out worse I could do by myself.
My eye issue since Nov is severe blepheritis/dry eye/floaters and now I have facial/ear pain as well. My docs have all come to the same conclusion and that it is one of the worst cases in some one my age. They usually don't even see this kind of a case under 40. I have gotten worse after all the meds and this last one has put me in so much pain like I want a vicodin for my eye alone.
As for support. I know this breaks my moms heart at the same time I feel my family still does not understand. I am getting angry at them and docs. If I hear the word this is chronic one more time and accepting certain things I will scream.Well sending hugs and thank yous

[daniella]

I forgot to add. After the last times I was made worse from the ey meds I said no more. Then I did again because I was in bad pain but not like this hell. Now I am so angry with myself because I should of listened to my instinct. Now I feel I am being pushed into the catheter for my leg because of certain issues with my mom also I will not be able to tolerate the winter and can't move again and I feel angry at her because though she has done so much for me and wants the best for me if I have to suffer more I will blame her like I blame myself right now for the eyes.That is not right on one hand on another I don't know. She is my best friend too. I don't know anymore. Ok sorry now hugs and thank you

[savannah]

A good psychologist with experience helping people with chronic illness would be extremely helpful. Seeing a therapist does not mean a person has a mental illness. A good therapist gives you a person to talk to with whom you do not have to consider their feelings .You can freely express yourself, your fears, sadness, rage and hope. Also through this process you may discover things you did not know and even come up with new ways of coping. A good therapist can help you learn better ways of communicating your needs and describing your pain to doctors. I am not saying your problems with doctors are in any way your fault! Its a shame they don't know how to listen.
Its hard to describe how helpful it is to have a person to talk with who is just going to help you, listen to you, advise and counsel you and never judge you.
You may also learn ways to lower your pain a few degrees. Stress is a component of all pain, it makes pain worse, as does anxiety, muscle tension.I'm referring to the normal anxiety and stress all people feel who have pain or illness . There are hormones released during stress that increase our pain.

[daniella]

Hi first some better news. Today was the first day in a year and half I went out for dinner to a fancy place and got lobster tails. Usually my pain level after 3 is so bad but today I had a turn around day where the earlier part was harder. Anyhow I got to spend the day still even though I pushed with my dad and he really lifted my spirits and it was very special.
As for therapy. I have been in therapy for 12 years on and off. I could write the book even they say. The issue is I don't always take the tools I have learned out of the box and use them so to speak. When I had my ed it took me 12 years almost to realize I knew what to do to recover but I had to do it and so I did. Now with the chronic pain and health issues I feel I can't just "will" myself well. When I feel better I am in a better mental mode. Like today in the morning I felt like hell and my attitude was in the pits but as I felt better through the day my mood went up. A huge frustration is I use my voice as I was taught and have followed the guidelines of treatment by not being my own doc but it gets me no where or actually behind.
I have made some goals though and am really going to try to do them
One stay in the day. My worring is out of control about the future
Not take my pain anger out on my family with spiteful words when they are trying to help
Be thankful for some things I do have like financial stuff because many here have major stresses there
Be more open to others suggestions
Push myself like I did today if able and try not to worry about the added pain tomorrow may or may not bring
You know reading my goals I think this would be a good post may be I will bring it up.
Hugs

[Leslie]

D-

Glad you had a good evening out and I'm so sorry you are having so much pain. I'll be sure to send up a special prayer tonight for you...