a letter to my congressional reps.

I am writing to you about a problem I am facing. as the congressional representation from the Great State of North Dakota, I felt it necessary to share with you.
I am a 39 year old man with a family.  My wife is a teacher at a school on an Indian Reservation. My kids range in age from 10 to 18.  I have two chronic health conditions and have applied for disability as a result.  I am not able to work presently because of these illnesses and what the medication does to my body.
I have been out of work since December 2010. For the last four years, I have been self-employed as a computer consultant.
I don't mind paying for medical care.  I am on medicaid for those that think it is a great deal, I have something called recipient liability.  What this means is that I am responsible for a portion of my medical bill.  I don't have a problem with that. 
When I had blue cross blue shield, it was called a deductible. 
My deductible for medicaid is 952 dollars a month. Do you have a 12,000 a year deductible on your health insurance? 
I think that everyone should pay their share. 
Until I get approved for disability, this is my fee every month.  Now once I get approved for disability, they will pay all medical bills up to five months after the disability began.  That can take about two years. 
Keep in mind that this is only my liability, it doesn't include my wife, or any of our kids.  I don't think that the affordable care act is so affordable.  What do I do until my disability is decided?  Do I choose not to feed my family a couple of meals or do I choose not to take my medication?  So far we are able to handle it, but if the doctor changes just one medication, that could change in a heartbeat.  Pretty crazy isn't it? 
What happened to affordable care?

Regards,

Pain and then some...

I am in so much pain tonight.  My legs are stiff and ache from being in the car all day.  I got too much light today.  Now my knees are swollen and very stiff, to the point where bending them leads to a lot of pain.   Not sure I can do PT tomorrow. :( I hate being like this. I hate pain. I don't like feeling worthless. 

ok. pity party is over.

Thanks for listening.

Staffing session for our Child

Well, today we had staffing for our son.  As I have posted before he is in a residential facility right now learning behavior management among other things.  The staffing includes such people as myself, the mentor coordinator, the program coordinator, the therapist, psychologist, nurse, partnerships care coordinator, family inclusion therapist, our son, and today we included the principal from he school. We also invited our advocate from Protection and Advocacy.

Surprisingly our son and the principal didn't have any issues.  Which is good.  During the course of the staffing, which lasts about an hour, everyone present gets input into our sons care.  Including our son.  He didn't say a whole lot. He talked about responsibility, not pushing or provoking others, and being respectful.

Our son recognizes and indicates that he is frustrated with himself when he misbehaves.  He apparently doesn't like the person he becomes when he is having a bad day, but is at odds about how to control it.  The psychologist reported that he evaluated our son and determined that he doesn't have OCD, but has very severe ADHD.  His recommendation is to continue the medication, implement a new one, which I can't spell.. and work on some other things. 

Our son spends at least 15 minutes before school running and jumping on a trampoline.  The purpose of this exercise is to burn off a bunch of his excess energy.  If our son needs to be redirected, he goes willingly.  There are times when he has to be removed from the class and go on time out, he goes willingly.

I heard a lot of positive things about our son today. 

I mentioned that I thought we should have the classroom teacher come to the next staffing for our son.  I also said that we should have the special education strategist come to that staffing.  The principal promptly said that would entail an IEP meeting that would need to be scheduled.  I agreed with that, and said that I also thought that it would be beneficial for the teacher and strategist to hear some positive things about our son before he gets back to school so that they aren't just hearing negative things all the time.

The principal did what I called the Bobblehead during the whole meeting.  She had a grin on her face and her head bobbed up and down during the whole meeting.

The rep from the regional special services asked if the facility was just going to discharge our son or if he had to meet certain standards before he was discharged... The case manager said that our son had to meet specific criteria prior to discharge. 

Discharge has been pushed back to mid-December as the staff doesn't think our son is ready to come home.

On the way out of the meeting the rep from Protection and Advocacy asked me what I thought about certain things from the meeting.  I said that I didn't think that the principal was willing to accept our son back in the school.  I explained my reasons. One - past behavior from the staff at school.  Two - body language.  I didn't get any indication from the principal that told me that she was willing to work with us and our son to have positive outcomes.  Ever get that feeling about someone?  Yes, I did.  I thought that she was telling the people things she thought that they wanted to hear.

The strategist from regional special services asked about services in the school. Our son will get help transitioning back to the public setting.  He will have a mentor who will work with him in our community, there will be a staff member from the facility that comes to the school to help our son transition.  In the IEP session they will make more specific recommendations regarding classroom time.

Our son is on a sensory diet so we will be learning about that too.  He uses a weighted vest during the day, as welll as stress balls.  The stress balls give him something to focus on to keep his attention so he pays attention in school.

That is all for now.  Our next staffing is roughly a month from now.  We have family therapy  and inclusion seminar prior to that.  We are also planning some home visits for our son.  It was very good to see him today.

Support

I am a member of an online support system for people with fibromyalgia.  It is incredible to be able to communicate with other people who have this condition.  I wish that there was one for Lupus.  The only thing that is not good is that I am the only man.  the other members and I share humor, and talk about everything.  I think that it has helped.

I started physical therapy this week.  what school do you have to go to be a sadist?  I think therapists must go there too.

Life and other things

Well, I was informed today that my medicaid will have a deductable of nearly 1500 dollars starting next month.  seems that the 31k a year my wife gets teaching is too much income for medical assistance in a family of 7. 

I had a sleep study two weeks ago, and another one next week.  Get to learn how to sleep with something attached to my face. 

We have staffing for the little guy this next week.  supposedly they are going to try to get the principal from his school to come to it.  "to try to repair the relationship..."  yep, good luck with that, he still isn't going back to school there.

i asked the hard question last week.   "What happens if my health takes a turn for the worst when he comes home?"

new opportunities?

So I was in Denver this week doing a Title V Block Grant review for the Department of Human Services Region VIII.  It was an incredible experience.  I learned so much about what the state level has to go through in order to get funding from the federal government.

In the process, I shared a bit about myself and my efforts to develop a non-profit organization for Father's of Special Needs Kids. A lot of interest from the state.  In that they are going to be doing some leadership training for fathers in the next year.  So we traded contact information.  Whether or not it will open a door or not, I don't know.

While it is nice to have a break from the normal routine, I sure can't wait to get back to the family.  Going to stop and see Marc tomorrow.  Liz passed her driving test yesterday.  School starts next week.  We won't have a child at the elementary school until January or so. 

It will be nice to not have to deal with the crap and what not from the administration at the elementary.  Wonder what is going to happen with the abuse and neglect complaint.  Time will tell.  more later.

it's been a while...

It has been over a month since I posted an update.  So much has happened.

Marc continues to do well in his placement.  There have been a few incidents of violence, but nothing so major that law enforcement had to get involved.  Started with family therapy sessions as well. 

The big thing that happened is that I spent 6 days in the hospital. I had been sick off and on since Christmas 2010. First I had the heart event, then I had the TIA's.  well after the Fourth of July, I was feeling really run down.  My wife took me to the hospital for a check up.  During the drive down, my chest lit up with a pain I can't describe.  It went down my left arm and ended in my fingers.  I never again want to feel that kind of pain.  What was it?  No idea.  Seriously.  According to all of the tests, I did not have a heart attack. 

Yet something was wrong.  While I was in the hospital they would frequently wake me up and give me nitro-glycerin and morphene.  I couldn't walk without assistance.  I was shaky, alternating between very hot and cold.  I was miserable.

They performed a number of tests, as they thought that maybe I had experienced another stroke.  No, the MRI showed normal.  They did a CAT scan of my chest.  Output is 30% of normal through the left ventricle.  More tests.  They did a stress test, during which my blood pressure dropped to 80/62.  They did an ultrasound of the heart, and determined that my left ventricle is enlarged. 

During the six days, I had three different doctors, and two nurse practitioners.  Most were honest enough to say "we have no idea what is wrong with you." 

One doctor, who my wife affectionately nicknamed Dr Moron went so far as to order a psychiatrict consult because it was "all in my head."   At one point, he was ready to discharge me.  The nurse practitioner, my wife and the nurse on the floor all disagreed with that.  Then he said that "it must be a problem with your colon."

In the end, my wife flat out refused to take me home until we were allowed to see my reumotologist, who treats my Lupus.  Bright and early the next day, when she doesn't normally see patients I was wheeled into her office.  We tested to see if it was the Lupus.  No, the Lupus isn't active.  She reviewed the chart, asked me a lot of questions and then diagnosed me with Fibromyalgia.  Plus I have an enlarged left ventricle in my heart, and weak adrenal glands due to long term prednisone use.

In the end, I am something of an anomaly in that most of the people who get Lupus and Fibromyalgia are women between the ages of 30 and 50.  It is unusual to have either one of these two illnesses, let alone both of them. 

So now, I am trying to get better.  I am learning what my new limits are, and working on a disability application.  I am seriously sensitive to light, and feel like a lazy man because all I do is sit in a dark room and rest 90% of the time. 

Marc is due to come home around Christmas, and I find myself fearing how my body will react to the stress of his being back home.