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I am a terrible blogger — there was a time I was fairly good at it. I guess my writing skills are being tunneled in another capacity — due dates & grades.

I’ve been at my job for a little over 2 months. 2 months ago today was my last blog post. In the last 2 months I have seen heart break, healing, tragedy and disgust — all in ways I had no idea the depths of which I could feel.
My job is challenging and has put my ability to be flexible to the test. I’ve been late more times in the past 2 months than in my entire adult life. The panic is lessening — and thankfully it’s not transferring over to my personal life. It is part of working in child welfare –things don’t go as planned. I have learned to not listen to others on time perception — some that I work with think 5 minutes means “less than an hour” and if they tell me it will take 5 minutes to get somewhere — it very well could mean 30! By 5 minutes they mean “not long” when I say 5 minutes I mean “5 minutes and 0 seconds.”

I spent 8 years as an assistant to the worship minister at our church — and I had no idea that God was using those skills to lay the foundation for my current job. Not a day goes by that I don’t thank Him for that opportunity. It was every bit a foundation for my current position as my education — in some ways — more so.

Graduate school — wow. We are having our first mid-term tomorrow -(and I’m blog posting -brilliant time management ;) ) I love the classes –the one that I expected to dislike the most is the one I like the best. I so disliked Personality Theories (both at TCC and NSU) that I really did not expect to like Counseling Theories –but instead I am completely enjoying it. I look at the text books for the 3 classes and wonder what the difference is — my biggest (well, maybe not biggest — most intriguing?) project is a paper on my own emerging theory. My professor says she can see my emerging theory forming. I’m dying of curiosity “JUST TELL ME ALREADY!” I’m learning more about what kind of therapist I do not want to be than what kind I do want to be — the end project should be fascinating.

Family — Don’s health is tenuous at best. He is doing so very much to help me, support me and make this new lifestyle work. It is incredible to think of where we came from to where we are. I will be forever grateful for him. He’s a pretty good cook too –we knew he could bake, knew he could cook but he really can. He’s tiring of being the cook and planner –and it makes me giggle –he’s starting to understand my disdain for the question “what’s for dinner tonight.” I will admit to some smugness over this –but we both have a good sense of humor over it.

The boys are both living their lives. Benjamin is truly searching to find his own place in the world and what God has for him. He has always had a unique sense of where he belongs in the grand scheme of things — it is fascinating to watch him grow and develop. He has his Dad’s sense of logic (this is not always a good thing on either part!) and he has my sense of social justice –and these two things often collide within him. Actually, his sense of social justice makes me appear to be complacent and disinterested.
Samuel is working hard to regain the footing that he should have had given his natural gifts. He’s got a strong work ethic and a love of life, humor and decency. I am so very proud of the men they have become. I don’t like everything they do but I trust them to do the right thing. They are remarkable men.

Life is good — very good and I am ever grateful that I am blessed beyond measure.

Sweet Justice

“I’m at the top of the world looking down on creation and the only explanation I can find –is that love that I’ve found ever since you’ve been around your love put me at the top of the world” — my oldest sister, Cleda, used to sing that song to me when I was a third grader. She was old, really old –all of 13 and in the 8th grade –

I’m sitting at the top of a paradigm shift in my family. After 24 years on disability I have returned to the work force. This is a privilege beyond description. According to the Social Security Administration less than 1/2 of 1% of those on disability ever return to the workforce when they’ve been on it for more than 10 years. The statistics for those on more than 15 years is so small it isn’t even ‘measurable’.
This statistic includes those who use the Ticket To Work program that allows one to work part time while on disability — 

I have sat back and watched the world go by as people complain about

Mondays

Taxes

Work Politics

and I’ve sat and wondered if they saw the world from my eyes would it look different to them? I was a stay at home mom who never made the choice to be a stay at home mom. Quite the contrary — my plan was to be a career woman who had her family as a priority. I never invited autoimmunity into my life — it intruded like a thief in the night stealing everything I ever wanted, hoped for or dreamed of.

Today I start my first full week — and that thief has been sent to prison. It is still very much alive — it just has to return and make restitution for all it has stolen from me. I have won justice. And Justice is sweet.

I do not take this privilege lightly — I value it. I treasure it. I am grateful for it.

Image

 

 

Actually Walking

friend sent me this video — I’m at about 50 seconds

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

Grief and Loss

When I was pregnant I dropped a glass and it shattered. In the process of trying to clean up the glass, I stepped on some and managed to lodge a piece deep into my foot. The doctor said it was too deep for him to retrieve in the office and that it would require surgery to remove. Since it was glass, it is an inert substance and would not cause an infection and would not break down and would likely not cause much of a problem other than discomfort. However, anesthesia would be a serious problem for the pregnancy. So, weighing out risks vs benefits — the glass would stay in my foot until after I delivered the baby in December.

 

When I delivered the baby, he was sick, I was sick and we couldn’t do it because we couldn’t get to it. Then, when the baby was 2 months old I was diagnosed with Myasthenia Gravis and I was told that there would never be elective surgery for me. It is just too risky. This piece of glass in my foot is classified as elective … and so it stayed. Eventually, I learned to walk without putting pressure on the place where the glass was and I pretty much forgot about it except for here and there (usually once or twice a week) when I would step on it and a sharp pain would let me know it is still there. It was a bit uncomfortable if I thought about it, but I was able to ignore it most of the time. But there was this feeling that there was something not quite right with the side of my right foot.

 

It stayed there … and 3 years later it was still there. Not causing an issue but managing to send sharp pain signals to my body every few days when I stepped on it just wrong. Then it started to work its way out .. and as it did it became a bit more painful. In the space of about 3 days it managed to work it’s way to the surface and as it ruptured the surface the pain was sharp and intense. But then — immediately this dull ache that had been there for more than 3 years dissipated and pressure relieved and what was left was little more than what a pimple would have left. In 2 days time there was no evidence of several years of discomfort.

 

This last weekend I attended a seminar on Grief and Loss. It brought up some painful and uncomfortable feelings. It reminded me of things buried in my heart that for the most part sit like a dull ache until something causes them to be hit … and then the sharpness of their pain reminds me they are real … and then they go back to the dull ache again.

 

In the days following my step fathers death there were things said that cut sharp

“he was *just* your step father.”

“God will work things out”

Within weeks I was told

“Get over it already”

one person said “look, he chose to die, I don’t know why you’re so upset, he wasn’t even related to you.”

 

He’d married my mom when I was 13 months old — he *was* my Dad!

 

Years later we were expecting our first child. One day we were told it was a girl. We chose the name Jessica Dawn. A week later — she was gone. Born too soon to survive — and the doctors said I would never have another (they were obviously wrong, but we did not know that yet)

And we heard

“God must have needed her more than you”

“There must have been something really wrong, so God took her home”

“It is God’s will”

“You’ll have more”

 

 

I learned to hide my grief. I learned that no one wants to listen to the tears of a daughter who feels lost and alone — or a mother whose arms feel empty.

 

Suicide

loss of a step parent

loss of a child born too early

 

these are all things that we, as a society do not mourn well –

 

In this seminar there was discussion by the guest speaker about just such grief. It’s called Disenfranchised Grief — a Grief that cannot be openly expressed because the death or other loss cannot be publicly acknowledged.

In today’s world there are many losses we brush away because they are uncomfortable or we think that there is no real connection, no reason to mourn past a day or 2:

Suicide

Still birth

Miscarriage

Step parents /Step children

Cousins (or other extended family)

Deaths due to drug addiction or alcoholism

Loss of a very old relative

The loss of a foster child

Divorce

 

 

 

As the speaker spoke of this … I felt the sharp pain of the losses, sharper than I’d felt in a long time. It felt strange because I thought I’d gained so much healing  — to feel these so acutely was alarming.

Then he said something — and he said it softly and gently “This grief is valid”

 

and it was like the glass popping through my foot .. the sharpness cut .. but then relief .. sweet sweet relief of healing. My grief was real .. and acknowledged by someone who didn’t even realize he was doing so .. he gave it a name. And in giving it a name, he gave it validation and in validation came healing. I will always ALWAYS miss my Step Father

I will always ALWAYS wonder what it would have been like to have been able to raise Jessica Dawn and miss her.

 

but the pain is relieved.

That was today’s phrase the doctor said. This, what we’re dealing with now, is chronic, long term .. not going away. “It will be like this the rest of his life”
You can’t fix  .. treat … or do anything but watch very carefully that pneumonia’s like the one in June crop up in that very inflamed lung.
You can’t do anything but watch the 2, 3 or 4 hour coughing jags …
Tonight one cough caused his entire body to spasm (most do, but this was particularly forceful) and he went pale and had a hard time focusing .. then a sharp pain … right where the spinal cord is displaced. A rock dropped like a bomb to my stomach …
I’ve noticed some odd cognitive issues … things he should remember  … things that should not be hard to explain but become impossible … telling me the same thing 4 to 5 times then getting mad when I say he told me already  … and furious when I insist he has. It wasn’t till tonight that it occurred he may not be remember telling me  … I need to think about this … is this oxygen issue? Is this just fatigue from dealing with so much? Is this a totally separate issue that has nothing to do with what we’ve been dealing with? Is this just a stress response? I need to pay attention to when it’s happening … it could be sign of infection impending in those fluid filled lungs …

It is far different to know that this was going to happen than walking it out in reality.
Discussion with pulmo again, turned to me .. and my self care …and coping. He suggested that I look at some of the information that is given to families with long term fatal illnesses like Alzheimer .. (I do not think the memory is Alzheimer .. in fact, it’s an issue that hasn’t been mentioned to a single doctor .. his point was .. they have good coping resources for long term unpredictable degenerative issues) Parkinson foundation … there is nothing like Don … so I need to look at illnesses who share characteristics of “unpredictability” “degeneration” “eventual terminal”

He had a few doc appts last week and his mother became frustrated with me. In her whiniest, most “poor me” “dejected voice’ she could muster she said “I don’t know why you insist on making him see all these doctors and do all these things. They tried to force me to do all sorts of appointments, surgeries and physical therapy with him when he was little and I simply would not let them insist his illness got to dictate my life. And look at him, I was right.”

It took all my self control to not say “Had you done the surgeries and allowed the rod to be placed in his back when he was 6 (it was suggested but she refused because the physical rehab would take too long), we would not be here. Had you taken him to the nutritionist and Physical therapist team when he was first removed from the iron lung, his muscle atrophy might not have been as severe … and he might weigh more than 92 lbs. If you had done all those things they tried to make you do then .. we would not be HERE NOW.” But I didn’t. I simply responded with “we all have to do what we think is right.”

 

I start school in 9 days … and I’m scared .. I leave him alone from 4:30 to 10 on 2 different nights a week. I’m scared I’ll be too distracted to concentrate on my studies. I’m also kind of relieved, no, very relieved, to have something else to focus on other than “Is someday really here?” “Is my husband going to die before I finish my degree? and if so .. which degree?” And a few moments of the occasional panic of “will he make it to our 25th anniversary in December.” (this last one is pure panic .. no reason today to feel he won’t … he will probably see me graduate in May with my Bachelors (though Dr’s will not promise me) But the master’s that is 3 years later is seriously in question .. and PhD a couple of years later .. the doctors just frown and say “I’m sorry”

 

 

 

 

When I was 23 I met my husband. We married a few months later and shortly after we married my mother in law told me that my husband was not expected to live to be 35. I knew he was disabled, that was obvious by looking at him. He’d had polio as a child and it caused significant damage .. but I did not know that it would effect his life expectancy. He was 32, so 35 was a huge shock.

We went on about life and would on occasion talk about the difficulties and possibilities. We had 2 kids .. .both of whom had significant medical problems. I became ill when my first son was born and for a long time, he was *my* caregiver while I was caregiver to our children.

When my husband was 41 they did not think he would live another year. But he did. When he was 43 we learned that he had, as a complication of the scoliosis caused by the polio, displaced spinal cord in the c5/c6 region. That they said, would cause problems, some day.

By the time he was 50 he was as healthy as he’d ever been in his entire life. But they said the scoliosis is worsening and that ‘someday’ it would be the beginning of the end. You see, his scoliosis is beyond the ‘life threatening’ level of 100 degrees.

When he was 51 he was playing with the kids on a wednesday morning, took them to school and came back and said “I don’t feel very good”. An hour later he was in an ambulance slipping into a semi colon as his lungs filled with fluid. By the time the ER was able to do xrays his right lung was so filled with fluid they kept insisting he had a severe case of emphysema (he did not). As he spent 45 days in the hospital recovering they did further testing and we learned that the displaced spinal cord was now at c5/c6 and c6/c7 and there is permanent nerve damage due to the compression on the spinal cord. “Some day” he *could* step wrong and his life would be over in an instant.
“Someday” the worsening scoliosis would interfere with heart, lung, liver, kidney function. “Someday” the scoliosis would cause the organs, one or the other, if not all, to start to fail or possibly it could rupture and then he would die instantly.
“Someday” the scoliosis, already incompatible with life would, in fact, prove that it is stronger than his will.

In February he got pneumonia .. and it wouldn’t clear up ..
and it wouldn’t go away
and he coughed
and coughed
and coughed
and his heart went out of rhythm in April and they put him on strong antibiotics by IV while they treated his heart .. but the lungs stayed irritated and full of fluid

and in June he started to cough up blood
and he was placed in ICU in an isolation unit .. and given very strong antibiotics and he improved a bit .. but he still coughed and coughed and coughed. After a week they let him go but did another CT scan a week later and there was no change
a week later
no change
a month later
no change
last week
No change.
And that’s when I heard the pulmonologist that we’ve been working with for 20 years say
“Peggikaye, “someday” is here”
His ribs are pressing in on his lung .. and there is an irritation and it is causing the pneumonia … it’s not infectious so they can’t fight it. They can’t fix it. Because it is the rib moving in on the lung and they can’t fix the scoliosis …
this
is Someday.

But we don’t know how long “Someday” will last … it could be weeks .. it could be months, it could be years .. but we know that someday is here .. and life will never be the same.

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