10/28/06

Many good things have happened - although I still live in pain.  I have been succe3ssfully working at a job for 6 months with 2 raises.  Yesterday I worked for 7 hours and earned $43.00 which is a record for me in my transcription job.

We also moved to a house without stairs, in Smyrna.  Life is easier when I need to nap.  Wheelchair fits through bathroom doors.

Saw Dr. BQ all summer and she was very helpful about showing me that sometimes I should just grieve.  No point in fake "its ok".  That has done wonders.  After a day or so of feeling bad I'm back to myself.  I also learned some relaxation and yoga.

Got a diagnosis.  Central Pain Syndrome.  Its a diagnosis of exclusion.  something in my brain is misinterpreting healthy signals as pain.  No cure.  But, Hospice is involved and I'm on Decagon - a steroid - and it seems to actually be helping a bit.  At least, I've gone up from 2 mg to 8 mg with no negative side effects whatsoever.  Trying not to get my hopes up too high.

Love our new house.
Tim is the best!!!

Traveled to FL twice this year.  Monica's wedding and then in Aug to the Rempe reunion.

Stopped driving completely in mid-summer.  Seemed to risky.  Scares Tim & me.

Tim's folks visited.  Hadn't seen them in 2 years.  Good visit.

Don't see Dr. Q anymore but, we keep in touch.

Still struggle with feeling isolated sometimes but, the job is great for me and I really have pulled my family in around me as my close friends.

I am adapting and surviving.  Still don't know how or why this happened to me, but if I have to live with this pain, I will try not to suffer from it.

Life is monumentally better than it was 10 months ago.  I am happy.  I am in almost constant pain but - I am happy.

Maybe I should write more often.

7/3/06

Last week was horrible.  I felt like I was going to die.  Actually die.  I couldn't even sit and work.  I could barely bather and feed myself.  One night I slept 14 hours, the next 12 hours.  The bad severe pain flare lasted 5 solid days with no relief but then I could finally walk again.  How funny it is to be grateful to be able to walk with a cane.  I had a nightmare that I could never get out of my wheelchair again.

Sometime I have a hard time even watching TV because theres all these commercials for vacations and stuff and it just feels like a personal jab "you can't do this".  It makes me sad.  Not angry.  Not jealous.  Sad.  And I feel boring.  I'm not even interesting to myself, how can I possibly be interesting to Tim?  I feel depressed.  I feel disappointed.

6/24/06

I am writing because Dr. Q. (my psychologist) said I should.  I don't want to really because I know it will upset me and be painful to do.  I guess I need to experience these painful times.

I've not been very good about the relaxation CK.  She wants me to do it two times a day but I haven't.  For some reason, I cant make myself do ti.  I am so tired of hurting.  I'm exhausted from it.  I can't bear to think about the next day of my life.  I only get to live in the present.  It breaks my heart.  This problem has robbed me of my job, my chosen field of study, co college degree, my sense of independence, my ability to make new friends, my willingness to travel to my family.  So much has changed because of it.  I feel irrevocable changed.  Even if I am better tomorrow.  I feel old.  And I'm not old.  I do reports each day for people who are much older than me and have actual definitive things wrong with their bodies and I find myself feeling a small sense of - well at least they know whats wrong with them.  Why do I hurt?  And why doesn't anyone seem interested in figuring it out?  How is it possible?  What if I am really sick?  What if they've missed something and I'm really sick and I'm not being treated.  I'm so scared.  It hurts even to write this.  I try hard not to complain.  I know no one wants to hear it, especially Tim.  He already knows I hurt, he doesn't need to hear it every time.

I want to focus on the positive now.  I have Tim and he loves me and I love him.  I love where I live.  My family is well.  I am so blessed.  I have to keep telling myself that I don't think I'm in denial, either.  My life is way better than lots of folks .  But, my situation does suck and I'm sick of it.  I hate being so helpless.  I hate hurting.  Its not building any character.  It sucks and there's no end in sight.

2/22/06

I passed my test!  What a relief.  Got it back yesterday.  Made an 84.  I feel like such a weight has been lifted knowing I will be able to work soon.  C. I. is going to help me with job placement next week.  I feel like life can maybe move forward again instead of being on hold.  Yay!!

2/14/06

It's Valentines Day.  I feel up today.  Slept good last night.  Tim brought me flowers last night.  They're so pretty.  A mixed bouquet.

Grandma Martin just called me.  It was good to talk to her.  Hard to believe I'm writing that.  She and I almost never had a good conversation until I've gotten sick.  She says she's excited to see me in April.

Yesterday, I sent Logan his scarf.

And I took my film rolls to the photo lab.  I'm cheating on my photo project and I don't even feel bad at all about it.  I just want it over.  don't care about the grade.

Just called Mom - I'm so blessed to have such a good family.

I had a phone evaluation with a psychologist who specializes in pain disorders and she does not think my problem is psychological so it was nice to have a professional opinion.  She doesn't think its anything from my past causing me this pain.

I haven't gone to see any counselor or psychologist yet.  Don't want to spend the money.

Evy wants to be fed - shes all over me.  But its not lunchtime yet.

Gave myself a haircut this a.m.  Short

The longer it takes for my exam results to come back, the more nervous I get about it.
I have turned to recovering alcoholics prayers like Just For Today.  It does help me to just concentrate on getting through one day at a t

1/27/06

I've been trying really hard to find a psychologist to see me at a reduced rate.  One is supposed to be sending me some articles in email to review and see if I can recognize myself in.  I'm going to have to pay about $50. an hour for it but, I really think I need help.

If Mayo won't see me - I have no idea what I'll do.  Where will I turn next?

I just left Dr. Maxwell's office and she was kind.  Did not charge me because she wanted to hold off on doing any lab work until after we hear from Mayo

I feel desperate now.  I need some help.

Mailed off my transcription exam this morning.  I hope I pass.  I'm worried and lonely.  And I hurt.

1/13/06

I'm gonna try writing my thoughts in a journal for some self-therapy.  I just feel a bit lost.  This morning is not as bad as last night was.  Mornings never are.  But this a.m. its raining, which makes me hurt so much more.

I'm kind of lonely.  I don't feel like its normal for someone my age to be so isolated.  I mean, about half the days, I literally only speak to one person, Tim.  I also talk a lot to Evy but, thankfully- she's not talking back.  In 2 days I will have been like this for 10 months.  I can't believe it.  I'm worried I'll always be like this.  Debilitated and in pain.  What if I can never have a family with Tim?  I'm scared.  And I'm so sick of hearing myself talk about the problem.  I hate focusing on it.  Its almost like I've let it take everything else away.  I have no life.  I'm working on the medical transcription stuff but, my family and Tim are my entire world.  No social network whatsoever.  It feels like the problem has isolated me.  I wonder if I've let it, if there was more I could to do retain normal life than I did.  Oh well - now I can just try to improve the situation.  I'm going to the Dr. next week.  I swear I'm not going on any more drugs.  Tim wants me to try but, I hate it.

I'm going to a counselor next week, too.  Maybe it will help.  I hope I like her.  I also made another appt. made another appt with one at St. Rose church for the next week.  With any luck, one of them will be good for me!

Since they cant' find anything wrong with me, I'm starting to worry that I did this to myself.  Could guilt from past wrongs be causing me this much physical agony?  There are unfortunately many things I feel remorseful about in my life.  Things I think about and I know God forgives me for but - maybe I haven't forgiven myself.
I simply can't undo whats done.

How ironic that, for the first time in my adult life which I am truly free of anyone coercing or persuading me to be in their control - I got myself back in college, a place of my own, not looking for anybody, - then I meet Tim, who was made for me- and THIS happens.

I have that all I feel like I have is the past.  I'm not really completely living fully in the present and I don't look forward to future things much anymore.

I know God does really know me.  I have faith that He has been with me every single moment of my life and He loves me anyway.  HE knows I'm weak and human and I'm so, so sorry.  I'll always have that present companion.

I hate that I have to be on an antidepressant, too.  It makes me feel weak.  Like I can't handle things.  I want to be able to handle things without drugs.

But really, I think I'm not a bad person.  I'm lovable.  I just made some regretful decisions that may be following me.  I don't know.

I'm gonna keep going to church.  I don't believe every single thing about the religion but, I do want to be part of worship.  And its pitiful that I want the others in church to see me and pray for me.

I can't believe how much this little cat does to keep me sane.  She is my little friend.
I believe animals do have souls.  I don't thin God would put such joy-bringing creatures here for us only to then let them die away forever.  They do have spirits and I believe that whoever is inside Evy knows I needed her company here desperately.

Maybe this writing will prove to be helpful.
I'm gonna work on my medical transcription exam now.  I'm worried about not doing well on it.  That would be a disaster for me to fail the test.  All my eggs are in that basket.  I cannot fail - its all I can do to learn.  I need to work.  I need something to do every day.  I'm bored and kinda sad and lonely.