Archive for the ‘Changes’ Category

It’s been a while since I posted —

In 2008 I decided to go back to school — I thought I was returning with approximately 40 credits and a semi decent GPA (what is semi decent to a 23 year old and what is semi decent to a 42 year old are remarkably different). I learned that some of the classes that I had dropped — I’d not followed through the process and I had 4 F’s where I expected either the A’s I had when I dropped the class or at worst WP (withdraw passing). I thought I’d have about 2.75, maybe 2.5 GPA — but I had a dismal 2.1. Financial Aid will not give you any assistance with a lower than 2.0 — my ability to return to school was barely a reality. Because I’d taken a disability discharge on previous loans, I had to get medical approval to go back.

I went to my PCP –and she was not willing to give that approval, she referred me to my neurologist. He was unwilling to give approval. He told me that I was ‘too brittle’ and that it would result in multiple hospitalizations for myasthenic crisis and the fact that I was immunosuppressed — I’d wind up with infections needing hospital management. He did not feel it was a good idea and was unnecessary — I was already on disability — accept that. I went to my pulmonologist –who had the same reservations as my neurologist –as did my orthopic surgeon and my rheumatologist and my dermatologist. Not one was willing to sign off on my papers allowing me to go back to school. I returned to my PCP and explained to her the drive –the NEED — the insistence in my soul that I do this and she signed the paper. She asked me to take 6 hours — and I told her the first 12 would be classes I’d already taken but had to do GPA repair. She had already signed the papers I needed, and said “ok, 12 hours, no more and no student activities ..and we take each semester one at a time — but 6 hours should be your plan.”

I never did drop down to 6 hours

I never did go into myasthenic crisis.

I never did get an infection that even needed an ER treatment, much less hospitalization.

I was an honor student

President of the Student Advisory Board

Student Government Representative for the Psych Club

Psych club Student Government Representative ( no, that’s not repetitive, 2 different offices to do the same job, but it does require showing up to 2 different club meetings)

Member of Psi Chi

Pi Gamma Mu

Phi Theta Kappa

Phi Theta Kappa Alumni Association Web Services Officer (for about 8 months)

I did 3 semesters of Independent Research (which will be expounded on in grad school)

I took the GRE

I applied for Grad school -and was accepted

On May 13, 2013 I graduated Cum Laude with a GPA of 3.5

With a Bachelor of Arts in Mental Health Psychology and a minor in Social work.

I started with 23 credits, I graduated with 143 credits.

I did what I did not think I could do

I did what I knew I had to do

I also won the full and total support of my medical team who are more than happy to have been proven wrong.

I am now looking for work with Department of Human Services –with a plan on working full time and going to grad school full time –and this time my doctors just grin and shake their heads


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progression …

This has not been the best of days, in addition to the absurd heat out there (112 today, calling for 114 tomorrow), I took my husband to the ENT and then had a discussion with both my husband’s and my mother’s neuro. (my husband’s is also mine and he (DH) opted for me to talk to Dr M rather than himself)

Mom’s neuro was an interesting conversation. She’d gotten into a conversation with my mother about a former job. She wasn’t sure what to think about it because the woman she knows would never have been able to survive that job, much less thrive as my mother said she did. Yet, my mother is insisting there has been no functional changes and my sister agrees. To me, this just proves that my sister has no respect for my mother … and never has. She has always seen herself as ‘better than’ the rest of us.

I told the neuro my opinion, mom has lost SIGNIFICANT functioning, and at one time was aware she was changing …that was about 10 years ago. During this time she had a couple of minor strokes. But she has had a dramatic personality change as well as a severe decrease in functioning. While working on her masters, a classmate had to give an IQ test, she used my mom as a guinnea pig (which she tested high enough the professor decided to regive the test to verify). She tested in the 150-160 range.
In 2004, she was tested again .. a full neuropsych battery. The neuro psych ignored everything I said about changes in her functioning, comprehension and loss of social skills and believed mom when she said she’d always been ‘this way’ and it’s ‘just ADHD’.
Her IQ was 103. I asked for a retest and it was, by another psychologist who didn’t do the full battery, just the IQ and she scored 98.

This to me sent off all kinds of alarm bells, but only my neuro (hers at the time) agreed. So, my mom did what most in denial do and changed neuro’s. Her neuro says she’s seen a decline of functioning in the last 4 years and is quite concerned. I told her that I’ve been concerned for a decade aned it’s quite the relief to have support.

Her official diagnosis is: Dementia NOS … not much help.
I know nothing about this diagnosis, but it is quite the relief to finally have a doctor acknowlege that this once vital, active, and highly intelligent woman who can’t understand simple directions, drives a car into a public library (literally) and then giggles because no one got mad and says “it was obviously not a problem, because no ne was upset with me.

Then there is Don. He’s been having increased numbness in his hand, the other night he dropped a hot cup of coffee as his hand refused to grasp the cup. He’s fallen several times lately, with his left knee just buckling and giving out. (this morning was last fall). Discussion with neuro says that this is the progression of damage we were ‘expecting’ and that there isn’t anything that can be done by doctors in t6his area. Given Don’s unwillingness to go outside of our area to seek help, granted, no one here can even start to fathom what would be involved to really give any kind of help.

The symptoms he has, Dr. M says is consistent with further compression on the displaced spinal cord at c5/c6 and c6/c7. There is also a visible increase in scoliosis curve from the last measurement (no one has ever told us what degree of curvature that he has. It didn’t occur to me till after I hung up that ‘last measurement’ meant that he’s (neuro) has the number).

His hearing is shot, but that’s genetic/age. His mother started to wear hearing aids at 52 and he’s 55. His loss is ‘significant’ which I knew that … been trying to tell him for several months .. I listen to the TV at a 36 (sound range on our TV is 1 to 100) he at 76. (then wants me to carry on a conversation OVER the blaringly loud TV.) He swears that americans have taken to the habit of mumbling .. no, not anymore than has been …
The hearing loss is annoying .. but not significant.

He needs sinus surgery and there is one where they put in a ballon and open the passage ways. It can be done with a local and takes about 90 min to 2 hours. It’s not Mandetory, but would make his life more comfortable … he’s thinking about it.

Is today over yet?

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A couple of days ago I posted about the last 22 years ..from health to disability to relative health again.

Today, I sat in Physical Therapy and a new patient came in. The physical therapist told them “In a few minutes you’ll be using my name as a cuss word.” I had to smile as I remembered my very first day in Physical therapy years ago … I was told the very same thing.

I guess because it’s been 19 years, today, since thymectomy, and diagnosis of lupus’ anniversary was yesterday, it’s left me rather reflective of how much life changed and how much it changed again …

When I walked into physical therapy, I did so wearing a pair of AFO’s. The AFO’s and I had a very odd relationship. They enabled me to walk without falling, to reduce pain levels in feet, knees, hips and lower back. They were also heavy enough that it meant being able to do half of what I could do without them on.

As time went on, my PT became increasingly concerned and ordered me a pair of KAFO’s
(AFO’s are knee ankle orthotics, the white braces you see occassionally that go from foot to just below knee, they keep the foot/ankle and calf muscle stable. KAFO’s are Knee/Ankle/Foot Orthotics and go clear up the leg, almost to the hip and stabilize the thigh, knee, calf muscle, ankle and foot) They were heavier than the AFO’s and my movement was limited even more. As bad as pain is to deal with, the fatigue was more unbearable. (I was also having to deal with all of my sons developmental/physical/speech/occupational therapy at the time .. not to mention his chaotic behavior due to autism)

So, my PT went against the grain and worked to strengthen my muscles, theoretically, at the time, considered not possible for a myasthenic. Thankfully … we were right ‘they’ were wrong. I’ll never forget 5 years after we started our rather aggressive program reading in a neurology magazine in my neuro’s waiting room that the recommendations were changing ..building muscle did not, in fact, worsen MG and in fact, decreased arthritis complications. My PT and I felt rather smug 🙂

Time went by and I kept up as much exercise as I could, in and out of PT for injuries or surgeries. Spending a year in PT working on balance after dislocating a knee cap that required surgery to repair … and I thought I’d gone as far as i could (but had no intention of stopping)

Then came yoga and my life will never be the same. In additon to life changing moments of realizations and clarity and some healing of the heart … came increased strength and endurance. The most remarkable is the pain relief. Not just taking the edge off as I was used to PT or exercise doing, but ABSOLUTE pain relief. Taking my pain medication intake from 180 pills every 8 weeks to 1 day short of a year to take those 180 pills, and if I’d not injured my shoulder (and had to put yoga on hold for 3 weeks!) I’d still have some!

But I can loose my balance without falling (as long as kitty cats stay out from under me!) no more standing and dropping like a rock without ever having moved! No more tripping and landing face first. I HAVE fallen in the last year .. slipped on a piece of paper on the floor, slipped on a wet kitchen floor and my cats have taken me out at least twice .. but EVERY fall has had a cause .. not just a muscle give away or not being able to catch my balance!

I sat there today and thought about those AFO’s and watched as they had someone walking up and down stairs and I remembered being taught, like a child, how to ‘safely’ walk up and down stairs. Something no one thinks they’ll be learning at 35 years old! I can remember having to sit at the top of 4 stairs because I’d become too fatigued after just going up those 4 to come back down. I remember the panic and pain and frustration welling up and the PT seeing it in my eyes and telling me that it’s not my fault .. it’s not laziness and it’s not anything that I did .. it just happened. And I thought back to the last day of school .. I was going to be late if I didn’t hurry .. and I had to choose between stairs and being late. I’m never late .. ever. I chose the stairs, knowing that I fatigue on them .. but still, I’d rather be fatigued (and maybe short of breath) than be late. So, up I went … and just as fast as I’d walked from my car (no longer in a handicapped space, I park at the end of the parking lot now days!) And I went up and PASSED a classmate (who asked me where the fire was)

My PT came over to me as I was thinking of the dichotomy of my 2 experiences … and she asked me to stand and I did. I had a book in one hand and glasses in the other and I realized, I’m not longer ‘standing with my arms’. I’m standing up by using my stomach and leg muscles … something that I never thought I’d do again. I came home and sat on my couch and tried it again .. and again … I can stand without using my arms to brace me or push me up (as I’ve done for the better part of 22 years!) 16 times, the 17th time, my arm reflexively went to my arm of my couch and the thigh of my right leg.

As I did my exercises I was remembering all the PT that I went through, and some OT, trying to teach me safer and more effective ways of using my muscles and wondered .. when did I go back to the normal way of doing things .. and how remarkable the human body is that with more than 20 years of doing things one way .. it is so easily and unconsciously done away with when no longer needed and how feeling normal feels NORMAL and when I go into a flare or wear myself out and feel the symptoms of the 2 diseases .. how ABnormal that feels … you’d think that you’d adjust to feeling abnormal … but you don’t .. it always feels wrong.

I imagine that’s protective .. to keep one from giving up and giving into a disease.

I’ve come so far … and I wonder how far I have to go … everytime I think I’ve reached a mountain top I look up and realize I’m just at a camping station .. the top of the mountain is soooo far up there .. and I will reach the top.

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