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?

[Audrey_M]

Red:

I'm sorry about your ride on the emotional roller coaster. It sounds like you found one of the ones that really takes one for the big loops.

What has been happening to you is very real; what is unreal is that medical science and doctors have not advanced enough to give you a diagnosis that would give you a better quality of life. Some diseases can be cured, others can only be treated, yet you are still empty handed in terms of a diagnosis and proper treatment.

After reading your post(s), I can understand wanting to take a break from the doctors.

Sometimes I think that I will not live as long as either of my parents because of the symptoms I have experienced. At the same time, I also understand that every day we live is another day that brings us closer to dying, as we are mortal and we all have a finite period of time on this earth. In essence, from the day that we are born, we are dying, as that is the process of life. Following that logic, I can say "Yes, Red, you are dying, but I hope that it doesn't come for a long time, with you finding a life free of pain very, very soon."

You add so much here, and I for one don't want to lose you, but also want to know that you aren't suffering.

In deepest care,

Audrey

[RedFlame]

Thanks for listening everyone.  I feel better getting my frustrations and worries out in the open.  I also need to develop a thick skin when it comes to doctors at least some of them.

My PCP is a good doctor and very interested.  She thinks all of this is bull__t.  I need to remember that I have her in my corner.  She has referred me to rheumatology for the possibility of Sjogrens Syndrome.  She asked questions about the areas of numbness on my body and was surprised I didn't have tingling or any sensation at all.  I am going to let her sort all of this out.  

The reference to the Sun is about statistical data that indicates that people from temperate climates tend to have a lower incidence of MS.  Tell that to Annette Funicello.  

If I am dying then it will happen.  

Perhaps this is part of the grieving process---maybe the title acceptance is just that.  I can't change what is happening to my body-----it just is.  

Thanks for the support everyone!   Red

[wiggles94]

I am sorry you are feeling so defeated.  But hang in there.    It is so hard to keep fighting against people who are supposed to help, when they are so unsympathetic.  That doc is so wrong with the comment about the sun.  AND wtf.....I'm not sure I would have that OT again -  Is she a OT, MD, psych, and social worker all rolled up into one big package?  WOW!  You were hit with a lot at a time when it sounds like you were feeling vulnerable.  

I hope you can find someone who can lend a good ear to talk all this out with.  Someone who will listen and not judge.  

As to your question - anyone who has a chronic illness that is undiagnosed will feel as you are feeling.  And when you have people who you trust with your care who you feel don't understand, that makes it so hard.  Give yourself a break.  You're ok.  Sounds like you need a break for heath care issues and docs right now.

I wonder if there is ONE thing that you can do for yourself right now that will make you feel better and bring some improvement to your life.  One thing......little or big.....one thing?
BE well.

[Sumanadevii]

Sun????Pffffff...I am a water baby.  I spent from my early twenties to mid thirties in Houston, Texas.  I had a pool in my yard.  Where the pool was I lived!  Up to eating meals on the deck.  If I wasn't in my pool or on the deck, I was at the beach.  In my teen years I was a tan queen.  Always soaking in the sun. So much for how much sun keeps us from getting MS...  The doctor is an idiot.

[LisaJF]

How dare that Neurologist say what he did to you! How dare he!  He should be reported with that behavior!  I'm angered to even think that a medical professional would act and say such a thing to a patient!  As if logistics had anything to do with MS?  Does it?  

Don't you dare allow anyone to treat you with such disrespect again! Ever!  You are an important human being, a person with feelings, compassion, empathy and love.  You are experiencing the trauma that the Neurologist and OT put you through!  How dare they minimize your concerns with their unwanted input and how unprofessional!  

You have us, you have our undivided attention at any given time.  Please do not give up hope that there is some decent Neurologist and whatever ancillary care people that visit you at home.  

Get rid of the Neuro Dr.

Talk to us! Let us know how you're doing!

[COBOB]

Yep!  You have to love that Northern CA Marine layer.   And it may have nothing to do with "sunshine" per se.  It seems to have something to do with the angle of the sun.  The only correlation is the distance from the equator, not the hours of sunlight.  So ho much that neuro knows.