"Health Update"

Well, I've lost 35 lbs in the last year so happy about that.  I'd be lying if I said I feel better because I don't.  However, I can walk fast some days and / or certain times of the day.  That seems so contradictory because when my feet hit the floor in the a.m.  I really need a cane to safely stand and walk to the bathroom.  My feet don't work right and I can't keep my balance and those first few moves are unbearable.

Knowing that a normal life span for me would be about 82, and that for 31 more years I am going to wake up and feel excruciating pain regardless of meds, well it's a huge pill to swallow!

I was having horrible hot flashes, but the doc started me on Neurontin and I haven't had a hot flash since.  It seems the Neurontin has also helped with the nerve pain.

Still largely homebound, but I do have some things I'm looking forward to.  Like the mountain town camera club meeting.  ;)

Having daily headaches.  maybe if I use the neti pot it will kill the sinus infection and hopeful stop the headaches.  (h/a)

They keep trying me on sleep meds and I've been allergic to all of them, so i'm back on Seroquel for sleep.  What that means is that sometimes I only sleep an hour a night but it's a little better then nothing.

"At the orthopedist"

So  far we are exploring sources of tailbone and spine pain, and left and right shoulder and neck pain.

What I know is that there are bone spurs on the right shoulder, the left shoulder there is soft tissue damage only

the tailbone xray shows that the accidents didn't cause any structural damage.  they want me to buy that ring to sit on.

there was a scene on the little couple where he gives jen a ring for her 40th birthday and she yells emphatically: I DON'T NEED THIS!

She thinks and hopes that physical therapy will help.  we shall see.

"Out for 2 hours"

I hadn't even been out of the house for 2 hours , when I could describe feeling the following.

Excruciating nerve, joint, bone, muscle, back and feet pain.    I know that pain management is not going to want to raise my meds but what the hell am I supposed to do?  Now that I'm sitting at least some of the foot pain is relieved but this really is ridiculous.  It's not like I ran a marathon, I'm just out doing my errands on foot!

"More on my health"

I'm having a lot of trouble with floaters and some blurred vision.  So, I need to get in with the opthamologist soon.  People who are extremely near sighted like myself are at greater risk of retinal detachment due to the shape of the eyeball.

The pain meds are better then nothing.  I wish I could have continued with the medical marijuana but there are a few reasons why I can't.  One of the reasons is because I am in pain management and they don't permit you to use the mmj.

I spoke with one of the workers at the dispensary who said that most of the mmj patients are using it in combination with painkillers like oxycontin.  I don't know how they get away with that because the pain doctors check your blood to make sure you have no mmj in your system.

I am 85% homebound.  The joint and nerve pain are unreal.  My knees most certainly don't want to do their job anymore.

I have to get in with a rheumatologist to learn more details about the arthritis and I have to go to the neurologist because the burning and stinging of the nerve pain is truly unbearable.  My limbs fall asleep all the time so I need to know how fasts the nerve damge is progressing.

I lost 30 lbs and feel very confident in my appearance which does belie my age.  I probably look a little younger now then I did in the 04 picture I posted.  But this blog doesn't have space for me to post a recent pic.

Hmm what else.  I'm sure a cane would help but I'm too embarrassed.  I am considering a water therapy class which is actually pretty cheap and takes place at the physical therapy office where I am not yet attending.

I'm supposed to go in for the colonoscopy and endoscopy but I can't because I need someone to stay with me for 24 hours after and there isn't anyone I feel comfy asking to do that.

The weather here is amazing.  Very warm no humidity and sunny.  I am a sun bunny who loves to bask in the sun.....................................................Still getting severe headaches more then  15 days of the month.

"Pushing myself"

I am constantly trying to push myself to disclose more to you.  My readers would never be bored for one moment if I disclosed more!

For example after nearly a 3 years search I have found a therapist who takes my insurance.  The reason why this is so important is because when "you" are a violent crime survivor it's like your secret and you can never talk about it to regular people that meet.  But because I can't disclose the details of the violent crimes on the blog it's important I voice it to somebody.

I am comfortable putting it in the potential, hopeful book, but i'd be most comfortable disclosing details in a book only if at least one of the perps is in prison.  It appears that's going to be a long ways off.

Another thing that would keep you interested (by no means is this full disclosure) is for you to know that I've made multiple suicide attempts between 2010 and 2012. 

If I were pursuing a mainstream career I would not have this information on my blog but I'll never have the sort of career that would be ruined by that information being put on my blog.

Because I am a natural researcher I refused to make an attempt on my life without being "heavily armed and educated"

I read "final exit" by Derek Humphries.  And I have even emailed in the past with Phillip Nitsche.

These 2 men are reknowned in the right to die movement .

My understanding is that Final Exit used to be called the Hemlock Society.

So, there you go, there it is.  This doesn't embarrass me.  I don't know anyone, certainly none of my friends could have survived even a month in my shoes without wanting out.

"Pain "management"

As you know there are always many hoops to jump through.  With my current as well as my last apt. you can be evicted if you are caught drinking, even a glass of wine.  Currently even though I have the medical marijuana card, there are 2 places that are not permitting me to use it; the pain management office and one individual who is forbidding me to use it if I want her help with something.

I believe that the mmj (med. marijuana) is somewhat safer then  pain meds but oh well.  The pain management nurse agreed to raise my dose last week which I think will help a lot, yet there is still a great deal of pain, enough that most days I can't stay out for more then 4 or 5 hours.

As I recently blogged about, I went to physical therapy to get a tens unit which can help a lot with pain management.  She said there is no guarantte that medicare will pay for this and if they don't you have to mail it back.

The tens is a good distraction from pain temporarily, however medicare called me to tell me they wojn't pay for it because they paid for one in 09.

When I was forced to flee the violent situation I was in in 4/10 and 4/11 I was forced to leave everything behind that had not already been destroyed or stolen.  One of those things was the tens unit.

At some point I may do pool therapy (if water is very warm) medicare will pay every penny of that and swimming is my favorite sport.

At this point I haven't found any relief from the neuropathy which is very severe and disrupts my sleep.

"all that's new"

There really isn't much new.  If I can get out of the house at all most days it's rather miraculous. Today I feared I wouldn't be able to get out due to waking up with chills, sweating and severe headache.  By 2 I was well enough to get out.

Maybe 2 days a week roughly I wake up wondering whether or not I belong in the e.r.  Usually I dcide against it no matter what's going on.

i.e.  yesterday I woke up with severe pain on the right side, that was only relieved by going back to sleep.

I now have a tens unit again they're kinda cool in that they distract u from the pain for the time that you are wearing it. 

Tonight is a special free event downtown which requires a lot of walking.  Today's weather is perfect but after dark it will get cold quite quickly.

Been working regularly on editing my book which is very satisfying.

"First time at the orthopedist"

Never fell asleep last night.  Miranda downstairs banged around so much it sounded like she broke into m apt.  Overall, however, I still have to say this is my best living situation in 2 decades.  I slept well the previous 3 nights.

So, I've arrived and thank goodness it's not too far from a bus stop.

Greeter: "Name?"

me-"elana r Snyder"

greeter-date of birth? (i'm uncertain whether or not she really understands English)

me-june blobbidy blob

after about 4 minutes of staring at her screen

greeter-"spell your name please"

"what's that date of birth?"

Greeter-"YOu aren't in our system"

me-"Well, that's not my fault"

greeter-"what date did you set up the appt.?"

me (are you fucking kidding me?) My appt. is today

she incoherently mentioned something about my email and how she can get me in with a different doc!

me-"You can't get me in today?"  "I'd like to speak to a manager."

greeter-"I got you in today"

The paperwork makes no sense and I ask her if anyone is avail to help me.  She said she would send over an m.a. to help me.  25 minutes have passed and she never sent anyone.  (do u c y I don't trust anybody anymore?)

She sends me over to some window where the second greeter scans the form in without having helped me with what I needed.

All total I was at the office for 3 long ass hours.

The doc was intelligent, but I might as well been speaking French, she just did not at all understand my pain descriptions, so she made me say the same thing over and over.

You are only allowed to present with 2 pain issues in one day.  So I said I want to know why my right shoulder and neck and arm hurt so bad and why the tailbone hurts so bad.

She said the neck is arthritic with denenrative disc disease and bone spurs.  At some point she may try injections with me.  She said I'll have to buy a ring to sit on.  I told her that the pain is still too severe to hold even part time work.

She is sending me to physical therapy.  I will keep you informed.

"Pain management/i forgot to tell you"

I forgot to tell you that if the pain meds don't work, the doc said that I can get steroidal injections 2x a year a the base of my spine.

She said it's a common procedure and usually helps.  However I would probably scream out and cry knowing me, so I am more inclined to just try the mmj again.  (medical marijuana)

I am still suffering to where I can barely stand or walk especially before 2 p.m.

I bought Dr. Teals Epsom salts , which come in lavender chamomile and mint and are supposed to help relax the muscles.  Smells fantastic and can't hurt.

"Painkillers not working"

So, I can think of only 2 things to do.  Ask the pain doc if he will increase by 10 mg or

if he won't then:

carefully use up all the meds I have and very slowly so I don't go into withdrawal, then hopefully find a caregiver and go back on medical marijuana. 

It is absolutely not humane or acceptable that I am in nearly 24/7 excruciating pain.

"Yes, I'm "alive"

I haven't so much as even been to the library since 11/2 when I came for a special event about Turkey. It was semi interesting however, the shindig focused on Turkish ruins and history whereas I am more interested in what real life is like for modern day Turks.  ;)

I wish I could tell u the biggest things that are going on, but it would be somewhat politically incorrect to share on social media.

I have been 2x to pain management and 1x to occupational therapy.  I have been largely homebound by pain weakness headaches and the vomiting that goes with it.

Nonetheless, something doesn't feel right about the pain management stuff.  The doc is highly intelligent but a little condescending.  As I told you, her husband who is her medical assistant supposedly comes into the room to "take notes"  however he constantly interrupts and talks about whatever comes to his mind!  It's particularly ironic because the actual doc does not want me to talk just to listen.

She is perm itting me to be on a small dose of oxycontin, but i'll tell you it does not make much of a difference.

She recommended some neck exercises and really has given me a boatload of homework.

You know for the most part I hate unsolicited advice, and with a n.p., an o.t., a p.t. and a pain management doc there are simply too many cooks in the kitchen and too many people telling me what to do!

It is also largely true that another big thing that makes it hard to leave the house is that nothing in society works, perhaps unless one is rich, so I pretty much know that my day is going to always be largely grueling.  The walking, waiting, transferring and riding buses is so emotionaly, mentally physically exhausting that there is no energy to do anything else.

"Very angry and disgusted"

I am so disgusted that even though I have aggressively pursued care for my illnesses and diseases, excruciating pain and weakness, I have been waiting for years with virtually no care and no pain meds.

The medical marijuana card hasn't arrived, and what I FEEL LIKE doing is calling up the state and telling them to shove the card where the sun doesn't shine and give me my money back.  But I won't do that.

Again I am disgusted that our society has no problem with putting animals out of their misery but humans have to suffer indefinitely.  I am just disgusted beyond words with this society.

"Not fit for a dog"

So, now that I have my own place, I have more days and hours where I'm homebound with these devastating illnesses.

I mean there just is no explaining how inhumane this level of suffering is.  My hands and feet don't work, I can barely stay awake, I can't even stand up in the morning because my feet don't work, have to hang on to walls.

Lifting ur head of the pillow or rolling over in bed are massive feats because of excruciating bone, nerve, joint, muscle pain that never ever leaves....................................

I stayed in all day yesterday, and the only reason I left the house today is because there is no food in the house and I can't really grocery shop with no car.

Brutal with a capital B.

"Synchronicity and mmj (medical marijuana)"

I expect to have my mmj card by the end of this week.  yesterday's mountain town feature was all about our town's new developments.

One dispensary opened last week, and had lines out the door.

A second dispensary is opening this week.  I'm relieved that both owners have been in close communication with local police.

I am relieved that the police will not randomly hand out dwi tickets to anyone who drives while on the mmj program but will only stop drivers who are driving suspiciously or erratically.

I am pleased to announce that:

"THE TIMES THEY ARE A CHANGIN'!"

"Part 2 At the Naturopath/Society has gone to the dogs"

However, I would not learn until 97, that I had fibromyalgia.  I told her that

in 2000 a deer tick transferred from my roommate's dog to me and I contracted lyme.

-I tell the nurse at the low income clinic about my bulls eye rash and she says: "Oh, just ignore it, it will go away

-from 2000 to 2003 I perform work as

nanny
teacher's aide
Spanish teacher

but by 2000 the fatigue is so severe I can barely function.  By 02 I can't hold a job anymore.

spring 03 my friend pays for me to see lyme specialist.

I tell the naturopath that the Lyme doc gave me 4 weeks of antibiotics.

She said: "WHAT?  THAT'S NOT ENOUGH.  YOU AREN'T POST LYME, YOU STILL HAVE LYME!"

me-"I do indeed have all of the symptoms of lyme."

She approves me for med pot but says that I need to hurry up and go the the dispensary TODAY, BECAUSE IT IS CLOSING TODAY!"

(I'm not happy to hear this because it is so hard for me to get around on the busses and this is too much to do in one day)

 I explained that I have 2 take 2 busses and then walk almost a mile.

She said, "Let my secretary drive you"

In the secretary's truck is a full ash tray and a seat filled with dog fur.  I spent 3 minutes trying to clean the seat.

She said that "Everyone I know smokes pot and they don't even have medical issues"  "I was in pain for 20 years and I thought to myself, this is nothing that a .69 bullet won't put an end to!"  "I am one of the original hippies and I have fought for legalization for more then 20 years!"

(she's terrific but not much of a listener)

Part 3 is coming soon

"Brutal brutal conditions"

Agency a. who runs my old apt. said that a new place had opened up for me where i would have my own place.  They never gave me a moving day or made any plans to bring me boxes or physically help me move.  So, penniless, wracked with pain, and 10 hours sleep a month in this dangerouos situation i have been living just minute to minute. 

Agency B said that i can't move into new place til a. gives the go ahead which they never did.

b asked a to get a motel voucher for me because unless i prove i'm homeless i cannot move to the new place.

never heard word about a ever having come up with the voucher apparently they didn't.  So, i'm just hanging minute by minute and getting tons of mixed messages. 

I had roughly 4 person from a. tell me one thing and then b. telling me the opposite.

a. told me to head over to the homeless shelter.  since it was last minute i had no change of clothes or any idea of how to get there.

i told b. that i was on my way to shelter and they told me not to go.

a. told me to pay for the motel myself in lieu of a voucher.  this was a higher up saying this, and i knew it was against the rules.  the rules are that an outside agency has to pay for the motel but nobody ever made the arrangements.

i was told i had to go to some new appt. with some new employee on a thursday, but b. implied that if i go to THAT meeting, i will lose the apt.

I arrived at the bus stop for the shelter and an acquaintance recognized me and walked me there.  it was nearly a 2 mi. walk.  you know i'm in excruc. pain that never goes away and the problems with my feet are so severe now that i limp the pain is so bad.

I was told to go in the fenced area kinda like a prison courtyard.  Folks have to wait outdoors sometimes for more then an hour.  Frequently the climate is brutal here but not today.  I knew this was going to be traumatic and i implored the 2 agencies to get me into the motel so i would not have to endure any more trauma.  Well, no one could get there act together so i figured i better go to shelter.

I waited outside for more then an hour breathing alot of second hand smoke since they do allow smoking in courtyard.  Isee 2 acqauintances, and i know alot of these homeless mountain town folks.  part 2 coming in a few minutes

"Fresh air 94 interview with Annette Funicello"

Annette's singing and acting really wasn't a part of my childhood.  I believe when she was in her heyday was a bit before my time.  Today i will go to you tube to search her mickey mouse club show.

I have some things in common with her.  She knew something was wrong with her health in 87.  I knew in about 88.

She began feeling the tingling in the hands and feet at that time.

For me the excruc pain and tingling did not start until 05.  But, this is one of the most oppressive aspects of my symptoms, because it feels like burning and throbbing and tingling.  My feet and hands don't work right.  I've told you that i feel like i have electricity runing through my body.  My skin feels like it's on fire , i will put ice packs on my skin.

Again, i have no pain medication at all which is really cruel and inhumane.  All  a part of the grand scheme to "keep everyone from becoming addicts"

If i lived in a warm place that was wheelchair friendly, i would consider ordering an electric wheelchair.  My pain and weakness keep me from being able to do the simplest of daily life activities.

Initially Annette was embarassed about her failing health and would lie to herself and others about what was going on.  She said she could not keep up with her own lies and then had to tell the truth.

She had m.s. which is extremely similar to the combination of conditions that i have.

She was smart enough to use a walker and a wheelchair.  As i have said there is no question that assistive devices would help me alot.

"Day 5 Migraine"

So, by no means are the migraines the only challenge , but that is what i'm blogging about right now.  Yesterday i was forced to go to urgent care (not wanting to clog up emergency rooms which are over run with the poor)

They gave me a very painful shot in my arm.  It was the first time ever i have had an imitrex injection.  They put it in the most sensitive part of your upper arm.  I screammed out, and then i had a delayed reaction of crying.  They didn't see me crying for a while because i was in the patient room alone.

I think the physical pain and burning of the injection was a trigger to cry about everything that is happeniong in my life.  They are ill equipped to handle that of course.  So the nurse asked me if everything was ok (duh!)  Then offered me apple or orange juice.  Sort of what one might do for a little kid.

I was in the urgent care office for almost 3 hours.  What a waste of resources for medicare.  In lieu of them giving me enough medication each month, i ended up wastijng medicare dollars at urgent care.

I awoke with severe headache again today.............................................

"I had a dream"

Usually i have nightmares, not dreams.  but i had a dream the other night.  In this dream, i was whole, well and pain free. I was bicycling fast down a series of hills on Old Liberty Road from Sykesville to Randallstown. 

Even in my dreams I'm conscientious.  I wondered why i was not wearing a helmet.  I always wear a helmet.  On the right was a carnival.  I told myself i would buy a sandwich at Kings Point Plaza and then bike back to the carnival.

In the dream I was about 25 and slender....................................................