Child abuse and neglect

Invisible chronic illnesses

It actually has a name

It's been a problem for years and I just found out that it actually has a name burning mouth syndrome. Need i say more? It's really horrible and you're always thinking about it either you're burning or you're feeling pins and needles. I also have reason to believe that I have Hashimoto's disease which is a thyroid problem. I don't mention the overwhelming majority of issues affecting my quality of life to my doctor because I don't honestly believe that she can do very much to help me but I will mention burning mouth syndrome and I will tell her that I need an MRI of my right shoulder and right arm because the pain is so unbearable and I can't do much at all with my right arm

"bye bye miss american pie"

from the chevy to the levee and this will be the day that I die.  After yet another "death scare" and what looked like yet another close call and things calmed down, I heard the American pie lyrics in my head.

I thought to myself on sat. morning that this not the way I want to die, and It is not safe for me to live alone.

First of all I awoke at about 6 a.m. unable to breathe.  The liquid came up to block off my airway.  I ran outside hoping that cool air would help.  I wheezed real loud for quite a while with very little air making it in.  For the next 3 hours my throat and mouth were burning a and you have that horrible taste and I was audibly wheezing very very loud due to the liquid in there.  Today I am still having a hard time breathing and started on advair but i'm not sure how to use it.

But the morning was a picnic compared to what was to come at 11 a.m.  I woke up freezing cold, like being naked in the snow.  My muscles were very taut, I was shaking violently, and my teeth were chattering so fast I could not have spoken if I wanted to.  I ran in to the bathroom, ran the hot shower and stayed iin there for the sauna effect.  It didn't work.

Even if I call 911 I can't speak so what good would it do.  I put on a coat and a hat and shoes and unlocked the door in case the ambulance crew needed to come in.

At about 12:30 I fell asleep, then woke up at 1:30.  My past experience with e.r.'s you know a little about because I have blogged about it.

On the one hand, I don't want to die in this manner, but on the other hand, the hospital will review me and tell me they have no idea what's going on.

When I woke up I felt like my fever was 103.  I was sweating and burning hot and weak from the ordeal.  I can't figure out how to use the thermometer I got from frys.

I have no money for a taxi, but if I call ambulance I wasted over 1k in resources, and getting home will be nearly impossible.

I thought it was related to a med. I'm on however my orthopedist told me today that she thinks that an infection is coming on and my body was trying to fight it.  She recommended I alert my primary are physician.

Over the last week

Been largely homebound by severe headaches.  Insurance only pays for 9 days of the pills and sometimes i'll get the h/a or migraines every day.  also having chills and sweats that are making it impossible to sleep.  I assume it's perimenopause.

They tried me on a med to help with nightmares and ptsd but I couldn't sleep even 5 minutes on it so I didn't continue it.  And they are trying me on nortryptaline for nerve pain but I can't stay on that either due to my heart beating through my chest. 

I nearly died on amitryptaline more then once when my body developed an allergy to it.  So it seems i'd be a great candidate for marijuana since I have so many problems with medications.

largely homebound

Still seriously ill and it is getting really tough to leave the house.  Based on my past track record it seems very unlikely that the medical profession will ever lead me to a healthier body or better quality of life.

I've been trying to leave town for 3 years but I just don't have the means, even though it wouldn't take a huge amount of money for me to move.

I wish I had something interesting to share but cable t.v. is about it for excitement, for now.

I have made a few attempts at joining social groups, but my lack of car have made it nearly impossible to attend.

"Two women and a trans-sexual"

Remember I told you that I don't brush my hair because of the arthritis, nerve damange and weakness?  Well, it turned into an awful matted mess with dreadlocks!

It took them at the "beauty school" 3 women and 2.5 hours to get the mats out and dreads out.  Was extremely painful.  Then they had no choice but to give me a very short haircut.  I am not a girly girl and hair is hair, it's not like hair brings happiness!

They school well they are very unprofessional, yet, they only charged me $14.00 even though I was so time intensive!

The person who got assigned to do my hair is 300 lb fully made up 25 year old man with long hair who is living his life has a trans-sexual.  And most certainly doesn't pass as a female at 6'2!  Very nice "lady" who used to be Bill but is now Billy Jean*  ;)

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"Funky Smell"

When the landlord showed me the apt. for the first time, I was "knocked out" by a horrific smell that they didn't seem to notice. 

I said, "let's go ahead and leave the door open because something smells horrible."

It's been almost 6 weeks now and that odor is still there.  I complained that it has to be mold.  they say they can't find any.

I can't help but to wonder if this is contributing to my extreme malaise, inability to breathe through nose, severe headaches and sore throat.

But when your sick where are you supposed to find the time and energy to fight so many battles................................

"Sick on top of sick"

I've been "away" for 4 days because I have been sick on top of sick.  Since the toe surgery, I've had 3 urgent care visits, one visit with my n.p., and have made maybe 4 calls to on call physicians.  On Sat. I looked at the toe in a public bathroom and (because of the lighting) it looked purple.

I called on call and she told me to go to the e.r. right away..

me-Well, I can't take the bus because it stops running in an hour.

her-Well that gives you an hour

me-no it doesn't, the next one won't come by for an hour (I feel really talked down to, she doesn't know the bus schedule)

me-I'll just hitchhike to the e.r. or call an ambulance.

her-can't your friend or family member take you

me-there is not anyone who can give me a ride

her-well I don't want you to hitchhike or take ambo. Just call a taxi and pay with your credit card!

me-I don't have a credit card, I can always go tomorrow

her-No, you need to go now

(I hung up)  Walked to the shop center and asked 2 persons if they were going my way.  The second one said they would, I told them I am ordered to the e.r.

I get to the urgent care and the dr. looks at the toe and says "looks fine to me!"

(my n.p. on the other hand says "things don't look good")

Get out of urgent care and ask 7 people before I find anyone who will give me a ride to the bus stop.

One woman said no and then went on to lecture me:

"It's 3/4 mile, there is no reason on earth why you can't walk that!"

(if it's so easy, I wonder, then why is she driving?)

She went on to say "When I was a child I walked that route everyday"  At this point her husband comes out and probably is thinking "Who is this weirdo I married?"

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By Monday

I am naucious, too weak to get out of bed, violent sore throat, bad acid reflux bad headache, and stomach cramps on top of the usual health mess.  So, it didn't really matter that I had no food in the house because I was afraid to eat anything.

Tues  I left the house because I knew I needed to pay rent.  But I was back home after 3.5 hours

weds.  Still exhausted, but it turned out had no fever even though I was sweating a lot.

On 2 different antibiotics for the toe but it still hurts

"The concept of full disclosure"

I have heard that the young ones, perhaps 30 and under or so, are very into full disclosure on social media.  For as much as I'd like to do that i just don't find it to be appropriate.

I have already told you that my life is like a cross between The Glass Castle and My Stolen Life.

That being said  what i can tell you is that i am violently ill, and just not getting the care I need.  Life conditons are deplorable and inhumane.

Yes, there is occasional joy and it comes under the backdrop of living in a body that is wracked with excruciating bone, joint tendon and muscle pain.  Chronic migraines, violentlly ill stomach.  That's just a tiny bit of the story.

I guess it doesn't really matter that much that I only have one dollar a day in food stamps because I am on a semi fast anyhow since i am so sick.

Sure is ironic that my uncle made a billion dollars, wouldn't you say?