QUOTE put in point form:
Quote:
Originally Posted by bobcatsrule
for those out there who are like me.
the incessant needles, tests, negatives and positives of test results.
the never understanding always feeling, shell of a person who never knows what life will throw next.
pain, transient symptoms, sympathetic but confused doctors
can't move forward can't look back.
raw emotion that never shows! must be strong must be brave, must cry with no tears.
depression
family that has dreams bigger than you can fill. with hopes bigger than you dare to believe.
dashed hopes, random attacks, painful and terrifying attacks. never the same twice never understood.
I am so terrified.
why does it persist? then suddenly disappear?
Good days????? what are those???  is that the fantom dream for which i strive?
Does ANYONE understand. a lonely illness, a savage illness! an merciliess illness. will it rob me of my ability to think and my sharp mind? where will it strike next? when? how?
with no insurance it is soooooo overwhelming.
must be strong, must not give in. to talk is to give in according to my family. thus i am locked in a vault of silence.
little areas of damage that didn't dwell within before. so scary, so agonizing.
they are shoes filled with pain and turmoil both inner and physical. is there anything that i can do? |
Hi bobcatsrule,
I have had MS 17+ years, and have had many of the feelings you refer to.
They don't know what causes MS; what it is (autoimmune disease, or ?); whether we all have the same affliction; how to cure it, and/or even good ways to treat it. Even WITH the dx, most of our problems do not go away.
I guess you could say I lived in limbo for 12 yrs, because once they told me it was probably MS, I refuse further testing (i.e. a MRI, LP, etc.). I couldn't see the point in knowing . . . what would that change? I don't regret my decision.
I regret knowing that I have a incurable, progressive, dreadful disease. I preferred denial.
If this was something more serious, after all the testing they've done, they should know by now.
This MonSter will reveal itself only when it is darn well ready, and not a moment sooner . . . just like every other illness we might have lurking in our bodies. What will be, will be.
In the meantime, there are a lot of people here, dx or not, that understand your anguish.
Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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