I Suppose I should start

My last post read more like a journal entry. My frustration with physical limitations, my frustration with lack of understanding, some bouts of depression some neuro related from brain injury.

I feel blessed actually for my daughter who is the first described patient with an active 2hga disease and still the oldest known patient globally. So many times I know we were on the brink of losing her but knowing in my heart that she was going to make it.

Blessed because my son had benefit of newborn screening as a follow-up for his sister's disease..this picked up a potentially life threatening organic acidoses which was detected before any damage could happen and successfully treated.

I have a good husband and a good home. I have my mother living next door as we went in together and bought a duplex. So she is next door for me to help and when she can to help me.

The last thing my husband said as he left for work, I had another doctor appointment with a surgeon..he said "I don't have the luxury of sleeping all day." I spend a lot of sleepless nights and try to nap during the day...but, only when I just can't go any more.

The concept of deep fatigue escapes them as much as the fact pain is not isolated to just one area. That sometimes when I fall it is possibly from polyneuropathy or it may be from my brain injuries or both, that I can't walk like I used to. I can't bend over because of a lower lumbar fusion and secondary surgery that ruined everything!

Medications are depressing. I have skin tags and warty moles (not HPV by the way) that is springing out on my chest, neck and going up my face. The surgical scarring and muscles cut combined with carrying 3 pregnancies..two to term..have made a lovely kangaroo pouch that I can't get rid of, thyroid tumors in remaining left side looks like a goitor - big ring of fat only in a loop on one side of my neck.

My self-esteem is really very low. I've been losing teeth and hair and everything combined along with weight that seems to be stuck or going up on its own adds to it.

I used to be very active, I used to go dancing every weekend, I used to walk a lot...up to 5 miles a day at one point and up 4 flights of stairs without losing my breath (that took a lot of months of climbing to accomplish that - like 2 years)..to have it all start crumbling from the age of 40 on.

I worry about my children, especially Nathan, in getting lupus. My father had lupus, I have lupus, his first-cousin on his father's side has systemic lupus. My lupus-we don't know as the RA doctor says one thing on one visit and another on the next. You do, you don't, you do, you don't..........but stay on the quinine if you don't because you need it now more than ever--then not refill it?

I worry about a lot of different things but I tend to internalize them because I can't deal with everything at once..one step at a time. I don't sweat the small stuff any more. My house looks like hell because my husband and son will not pick up after themselves. So I give up and just stay in my inner sanctum if I'm not up to clearing things up.

I'm agressive with doctors and if they don't work with me, I find one that will. My RA doctor I'm stuck with as there are none anywhere close within a country mile over a space of several counties which is anywhere from 1 1/2-2 hours or 4 hours away if I'm to find someone.

I live in Waco so I would have to do some travelling to get a second opinion and/or a new specialist. Because of my epilepsy and brain damage where I tend to lose direction and get lost even in familiar territory...I can't pick up and drive anywhere. So, sort of stuck.

OK...here's a few months of journal all at one time. Now I can see if I have time to keep up with it. With learning how to make MUCH shorter entries and posts.