Acceptance

[RedFlame]

I have wanted to reach out to all of you for a while-----this is sort of long but hope you can lend an ear if you can.  

Some of you know that I have fallen twice on the steps to my sisters house.  She became enraged when I told her about the falls.  I landed on her mums once and then on some flowers the other time.  Well, last night when she let her dogs out she fell down the same steps.  She broke something in her ankle.  

Instead of trying to reach me in the out building she called her daughter to come get her.  Her youngest child came home at 10:30am and asked me to pack a bag for her.  That was the first I knew of this.  She told him she “didn’t want to come home because there were too many hazards”

A few minutes later

My O.T. came.  She mentioned that my medical chart said I have PPMS and then reports tests that were contradictory of that diagnosis. She said, “I am wondering if maybe you don’t have PPMS but have Chronic Inflammatory Disease”.  She related further that my obesity, environment, depression and diet could be to blame.  Also, people who were sexually abused as children had double the possibility of getting CID.   I am totally screwed.

I was very assertive and told her that this topic was a trigger for me.  We talked it out.

Then, last week, my general neurologist  remarked “you are from California so maybe you don’t have MS…… the sun shines there all the time….you don’t want to have MS anyway”.   I didn’t have it in me to fight or tell her that San Francisco typically has fog between the city and the sky.

Which brings me to how I feel.  I am not going to have any more medical tests or clinical exams.  I am not going to talk to doctors again.  I am only going to seek help for my pain.  


You know how powerful a womans intuition is right?  Well I feel like I am dying.  I have had two major surgeries in my life, what I feel is much much much worse than that.  Surgery is a breeze.  Even though my meds have been tripled I don’t get better, I have days where the pain is less certainly, but the level of disability remains.  I know it sounds dramatic and helpless, it’s just a gut feeling.

A dear friend of mine came to me and told me she was dying, she knew, she was gone in 14 months.

In the end it doesn’t matter what it is called, PPMS, CID, or whatever the flavor of  the day is.  Treatment is the same----pain medicine

Do you guys feel that way too?  Am I just a person that isn’t trying hard enough?  Am I a hypochondriac?

[freddie2]

Hello Red,

Doctor's make me sick!  I live in Florida, for crying out loud. I just wanted to let you know that I was speaking to my spouse about 30 minutes before I logged on. I read your forum, and I am going to try & encourage you by telling you that yes, you are fighting for your life, sweetie. Don't you dare give up on any Doc, negative comment, & especially yourself. You can & you will, beat this, and be a testimony to others as well.

This is the exact thing I was speaking to my husband about,-so I wanted to share this with you.
You've labored, but it's not in vain.

Be blessed,

[sadie405]

What a time you've been having-- My goodness! I'm just so sorry for everything that's been making life harder than it has to be. Sending support(and flicking off your neuro),
Sadie

[starryeyes1]

Red-

I just want you to know how helpful you have been to me and others in the past. When you talked about your intuition, it broke my heart. I know very well how tough it is to even get up day after day especially in pain.

The Dr who said those insensitive/stupid things shouldn't be in the medical field. Unfortunately, there are way too many Dr's out there who have no sensitivity or common sense. I just want to say that I lived in Greece for quite a while as a teen and I still got MS. What now??

I am going to pray for you to feel better both physically and mentally. It makes me so sad to hear such dispair. Please hang in there. We are all here for you to vent if you need to.

Hugs and much support-
Kristi

[RedFlame]

wiggles I think our posts were so close together that I missed yours.  This particular OT is very different.  I don't know her so reading her non-verbals was next to impossible.  She was truly trying to help, she opened her mouth and landed in a Quagmire.  

The Sun thing was a stupid thing to say.  My personal favorite quote of that day was "you don't want to have MS".  

[supermum_ms]

Red my dear friend,

Pain will wear even the best of us down, with or with out a dx, pain is one of those insidious conditions that will eat away at you, until there isn't enough left. You do sound overwhelmed by so so much, supidity from dr's and others is only one type of problem in a long long line.

I could tell you to stand tall etc etc but i dont think thats going to be of much help, and help is what you need! Am I reading more than clearly said, with your sister injured are you feeling more helpless, and even more depressed, was her calling her youngest instead of you who was closer, the final tether broken? Only you can peice your thoughts together, to see how you found your self in the mindset of lost hope. I wish i could give you a hug and tell you tomorrow will be brighter, it can be but isn't likely if you dont get the help you need.

Just how bad is your state of mind? Dont tell me, tell your self, if its as bad as i suspect, please focus your attention on changing that one thing, nothing else, just one step at a time. Call who ever you have to, do you have a therapist? What drugs are you taking, in what combination is there something that can be tweeked, is there any chance the drugs are eating away at your mental health, if you dont know find out. Many drugs that are rx for neuropathic pain are SSR's, atypical and anti psychotic's, if your on any of these type of drugs then they can throw your mental health state out of whack.

Sorry but this is not the time to give dr's a wide berth, you need to see someone asap, your mental health is important, it doesn't matter in the long run if you do see a psychiatrist to get you through this, WHAT EVER IT TAKES!

HUGS...................JJ

Ps dont be silent, we are here!  

[RedFlame]

Thank you so much Audrey, I do know that all of us are dying.  Thank you for reminding me about the fact that we are all dying and that from the moment of birth you are dying.  

I have the same thoughts about not living as long as my parents did. Like yours, neither of them experienced what I have or am going through right now.

I want to sort of 'let go' of this situation, I don't have control over it. I have attempted to steer this monster and now need to let it be.  At some point it will get worked out, probably without my help.  

I will continue to be here, this is my home and I want to support everyone here.  There will be times that I am very discouraged and not handling my pain very well. But like I say, we are all in this together!

Red