Long Week

I feel as if I am fighting a losing battle right now.

I am having reflux like symptoms, no clue whats causing them, but its nasty.
I have had numerous accidents this week, I need to drink less or live in bathroom one of the two.

We finished off a semester of Homeschool and I am going to do the unthinkable and test Lauren, if she is ready, we are going to just start her on 2nd grade when the books come in.

My pain has been out of control for too long...but I will have insurance in February...progress?

Tired and hurting. Listening to music, going to sleep

8th Anniversary

WOW, I have been married 8 years.
We have had a major event or more every year and our love has grown stronger through them.

Another week gone by

This has been a very eventful week.

Today we filled out Laurens SS app, she won't get anything yet, but will be eligible based off of cost of living til she is 18 so long as I am still disabled.

Overall, things are ok, my head has been constant pain for what feels like FOREVER. Its extremely weather oriented, yesterday it was 80 and I was sick enough to take my med trio, usually I stick with JUST my Klonopin, but last night I added a flexeril and a vicodin just to sleep, still took me almost 3 hours, grr.

Today is much cooler (about 20 degrees) and I needed that to break the pain cycle again.

I am seriously thinking of adding Central AC to the house.

And so Ends the Semester

This has been a whirlwind of a 2009

I have been sick and in constant pain for more than a year

I decided I was going to TRY to live life anyhow, and for me, I saw huge successes amongst the struggles.

In January I started school again, College was not easy for me since my pain does not allow me to sit or stand for long periods of time without movement.

I took 3 classes, Anatomy and Physiology (the school I went does this as one class most universities do it in 2-3 semesters)
I struggled like crazy to pass this class, missing a week from my Emergency Room run did not help in any way, but I got a 2 week reprieve since Easter was around the corner...nice recovery time, but missing that one class hurt big time.
I wound up struggling to carry a C- all semester, then at the end, Wowzers, I did it, I only needed to average a 70 on the final two tests to get a C without the minus...but I was thrilled when I checked grades, I got a C PLUS, yes, I did, I screamed, raised my pressure and made my self sick, but it was good to be sick cause I was happy not cause I had some stress that set my system off.

I was perfectly happy to go rest, I had NO plans on the agenda, we were done and it was ok to feel weak and worn down I had done it, I passed A&P in ONE class...yes, I am proud, with the fact that my memory has been getting significantly worse as my pain increases my brain power seems to be decreasing...hopefully we will be able to see pain management soon though.

I passed my other two classes with A's I had Medical Terminology (kinda an easy class for someone with all my medical problems), there were only 2 chapters where I did not see the specialist that was covered, that made me sad, but still, it was an easy A.
The other class I took was Business Communications, a required class for most majors...I learned alot, mostly confidence from this class.
I thought at first it was going to be AWFUL, it was speeches and papers, neither of which I like...but I made it.
I got a great teacher who really felt that the learning was more about the experience than the assignment, it was a practice class for the real world, by doing the work, and having perfect attendance, I got an A there too, if I had missed a class I would have had an A-
It was in this class that I went to class so sick I could not function and went to the hospital AFTER class, that day I got my spinal tap and have been functioning about 20-30% better ever since.

Also during this semester, I applied for and was approved for disability. PTC is very damaging to the medical resistant patient, my neurologist wants me to have surgery but the surgeons say I am too high risk and so we wait.
Currently, I am doing my follow up and maintaining a minor drug regimen ( I have muscle relaxants and pain meds that I take when the pain is unbearable, and an anti anxiety muscle relaxant that I take nightly to help me sleep through the pain, plus my B12)

I am still planning on staying in school, I will be taking 3-4 classes next semester depending on how I feel when registration rolls around. My goal is to get enough pain relief where I can get through my certificate program, but if I can't pass the physical, I will switch back to HHIT which I could then potentially do from home or part time or if I improve enough, full time.

Pain

Today I finished up classes for the semester, my pain levels have been through the roof this semester. I am proud to say I made it through with at least a 3.0 gpa but I have suffered alot too.

My head pain is averaging an 8 most days and I sleep almost more than I am awake.
My leg is improving SLOWLY, but when my head gets bad it quits entirely.

I see Dr. Turner in just over 2 weeks, and am hoping he can give me some sense of what to do next.
My medicare will kick in in February or March I believe, at that point I am sure he is going to send me to see a neurosurgeon. Either way I am struggling to have confidence in much of anything.

I did make it through the semester with only 2 ER runs, but I am fearing more may be on the way.

Disability Stage 2 complete

Well I received documentation today, I will start receiving payments for May, first deposit will be in June, I will be evaluated every 3 years, hopefully this does not last that long, I am hoping to see another surgeon when I get insurance and HOPEFULLY, that will help ME get better, instead of keep on fighting this.

Disability Stage 1 complete

Today I received the letter, I met the medical requirements for disability.

According to research that is a very good thing, I move on to stage 2, deciding if I am capable of working.

My disability date was actually September 1, 2007, which tentatively gives me 15 months back pay as of RIGHT NOW.

Praying hard that we get through the next step as easily since I need medicare, it will kick in effective February 1, 2010, once I make stage 2.

No Nap, and Pain returned

Ugh, I was doing so well, Tonight my back, neck, and shoulders feel like I don't know what Hurts like all get out.

I am nearly in tears if I move my head at all...

My leg, My goodness, Uhm, I am tired of this, VERY tired.

Go figure, most of my day is great so my pain decides that its goin to RUIN my day.

Heading to bed, and I am prayin for some GOOD hard sleep.

Positivity

This has been a rollercoaster of a week, and its only Tuesday...yesterday I finished my Medical Terminology class, YAY Me.

My head can't make up its mind and has been floating around a 6 for so long its gettin annoying.

I feel like its stuck.

Lauren has been better the last couple days, I think its cause she konws I am tottally serious and wont be puttin up with her crap.

I am worn out though I have to go pick up a script and some groceries this afternoon but I need a nap first.

FIFTEEN MONTHS

Thats how long it has been since I have taken a bath, walked without pain, played on the FLOOR with my daughter, or played with her in any truly effective way.

Thats how long it has been since I have known that My PTC won't be going away anytime soon, and if you take away 3.5 months away from how long I have known about the Chiari, and the road that I have been living learning about why I feel the way I feel.

Its amazing how much I have grown in these 15 months, I trust God more, I lean on him more. My husband and daughter...well they have come quite a ways too, this has been emotionally harder on them as they don't understand how I feel or what to do to make it better.

Laurens maturity has gone the wrong direction, she is growing down instead of up...its too stressful on a baby girl.

I have applied for disability, I have had more medical appointments that I ever thought was possible. Ironically, this all started TEN years after diagnosis.