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?

[Ndobbins]

I've worried that if my neuroapthy gets worse I probably won't be able to feel the peddles & my judgement/depth perception is terrible! I walked into two things at work Monday! Literally didn't see them! I feel very frustrated & embarrassed. Whatever! You know the next time a doctor tells me that I don't "want" this disease I think I might walk out of their office! Nah, then they try to classify you as having anxiety. It's all BS! I asked the rheumy how she would feel if this was her???

Take care & know you aren't alone!
Nancy

[Sumanadevii]

Red, I am sorry things have become that bad for you.  The hand controls may not work with the problems you have described with both your hands and wrists.  My problem was moving my foot off the pedal.  The day I took my sons through a red light nearly killing us all was my last driving day.  I had no idea it was MS.  I just thought I was a bad driver...My oldest son ran into a gas station and called his father.  No keys for me after that...and no I don't drink...lol

While I was approved for SSDI, I have a two year wait period before I can get Medicare.  I began receiving SSDI in September.  They have said I am eligible in July of this year???  SSDI sure counts differently or uses a new math program.  So, I guess I will wait.  I would love to have PT but can't bring myself to ask favor again of my husband.

Thank you for responding.  I send strength to you my friend.

[RedFlame]

I don't drive anymore.  I am home bound. This has been a recent addition for me.  I can't feel the pedals and lose my ability to judge distances.  There has been talk about using hand controls but it hasn't happed yet.  I don't know that it will be the answer.  I haven't actually surrendered my license though.

I am home bound with the exception of doctor appointments. I can't shop for groceries or go to a walk-in pharmacy.  

My PCP was concerned because of episodes of falling and other private factors.  
My medicare pays for this so I don't know what type of insurance you have.
This is called Medical Case Management and they work as a team.  It won't be a forever thing.  They re-assess every 9 weeks.  

I would just ask your PCP for help, make sure you know what you need or want.  Let us know what happens OK?

Red

[Sumanadevii]

Red, how did you go about getting the team of help to come to your home?  I know you have said you drive and I haven't driven in eight years.  I know my husband would enjoy the break from running me all over the place.  Any ideas on how I might get those services?  

[RedFlame]

Hi everyone,  Again thank you for your support.  You are all great friends who are faithful and consistent.

I do feel better today, I had a reprieve this morning for about 5 hours. It's back tonight but I am trying to stay on top of it.  I hate bringing out the narcotics but maybe I should more often.  Instead of abusing them I take half of what I am given each month.

I have a team now that comes to my house; a nurse, O.T., medical social worker and a physical therapist that I haven't met yet.  I am blessed to have this team.  We are talking about perhaps doing a 'straight cath' to see if there is in fact urine left inside.  

Sometimes, when I am battling the pain part I am amazed that the pain can be that bad and that our bodies can do that.  I am going to allow myself some narcotics tonight.  

As far as the "....you don't want to have MS..." comment, I cut her off before she could finish the sentence, she realized she was being an idiot.  I am going to ask my PCP for a referral to a neurologist that isn't a moron.

I want to be here on our support group and be involved with everyone.  

I just need a break from the fight.  I need to be able to rest from that.  

So for now we will just say it---'for now' like Shelly said.

love and hugs to all,  
Red

[supermum_ms]

Hi Red,

How you doing today? I and many others are thinking of you, feel our support and let us help carry you through this time. I know YOU will again find your fighting spirit!!

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