Observe me

If you or social security observed me for 72 hours it would b very clear how sick I am.


I'm only getting out 10 hours a week, roughly


I had considered taking my journals entries where I write down my symptoms for 24 hours and then just putting it here, but you'd feel sorry for me.  There are a couple of things that I can't tell you about because they are too embarrassing.


You know I used to have menometrorrhagia.  I had 6 week long periods.  Would b no surprise of that contributes to my devastating weakness.  For 16 years I have never stood for more then 10 minutes.  If I have to stand in line I find a chair then tell people where my place is in the line.


Most days I cant open my eyes fully until 1 in the afternoon due to my severe burning eye pain.  So I'll have to put my hand on my lids and open them a squint just so I can get to the toilet.  Like thurs for example. 


(If I sat in a chair leaning forward for more then 5 minutes my feet and legs fall asleep. this is daily)


Thurs. airway blocked off


woke up with my skull crushed


nausea


migraine


cant' walk


all day vomiting


this is with  the usual burning, stabbing, throbbing pain.


Since I got lyme disease my nerves have been damaged.  YOur whole body is on fire.  Your feet , legs, arms are wrapped in a very tight barbed wire, while an "invisible person" has taken scissors to your nerves and veins and is cutting your feet arms hands and legs.


I told the bus driver, a friend, when he asked me how I was a few weeks ago, that "someone has taken an electric singer sewing machine and has placed my hands and arms under the needle and is just randomly sewing me up without anesthesia!"


So, If I'm awake then I'm hurtin!

Sleep/or stay in bed

Even if I'm not tired I am forced to stay in bed and sleep as much asp ossible because the bodywide pain is excruciating.  Looking into an mri for the right shoulder arm and hand, the pain has been there for years and a bone is moving in and out of place, I cAN feel it popping.

There's no point in listing all of the symptoms but it's very inhumane.

It's excruciating pain

It's excruciating pain and it's invisible to everybody else because I don't talk about how my body feels. This is one of the best photos I have ever seen that so perfectly describes what it is like to live in my body from sunup to sundown

life is mostly just one big to do list

there's a lot that I plan to share with you there's a lot that I need to catch you up on. Between the crushing fatigue of the fibromyalgia the nerve tendon and joint pain from the Lyme disease the daily migraines the severe back pain its all I can do to get out of bed and face my life. I haven't been functioning at a very high level, on the other hand given my body the way it is I get a relative high amount of things done.

I went to the Food Stamp office and I will blog about that another time it was a horrible experience with a five hour wait my clerk was very rude and grab the papers out of my hand! The next time I go back cuz they want me to come back I'm going to request another case worker I've got $1 a day to last for 2 weeks, I tried to go to the Food Center the rescue mission to eat but most of the time I can't stand the food so that's not really a good option.

I also had a consult with the breast surgeon and he was a real a****** and very disrespectful of me, some doctors resent it when you tell them that you have been studying up about your condition, they resent and educated woman. The bottom line is I still do not know if I have breast cancer or not and I am supposed to be meeting with another breast breast cancer console surgeon. All I can say is oYy vey!

Living with serious illnesses

WEED 2 - Cannabis Madness - Dr. Sanjay Gupta Repo…: http://youtu.be/i2qFDb8LExo

there's a new neurologist in town

 AAwent and saw the new neurologist in town today. Things we discussed are my daily migraines and my severe peripheral neuropathy. He's putting me on a preventitive for the headaches, and he's giving me a higher dose of the neurontin for the nerve pain. He said that the narcotics maybe triggering my headaches. We're going to do a nerve conduction study to determine why I have nerve damage. I told him that it could be the starvation and or the Lyme disease. He surprised me by saying that even though I have survived starvation, most likely my body has already made a full recovery from that. The nerve conduction study should also determine whether or not I am going to end up in a wheelchair or not. Perhaps it will give me more clarity about the neuropathy As I am NOT diabetic.

things have been absolutely crazy with my health

my nerve pain has been so severe that I haven't even been able to function its just like been the worst thing in the world and you know I don't want to look up the emergency rooms with things that regular doctor should be able to handle so I went to the Urgent Care place and I can't believe I've had to wait years to finally get the right medication and years and years and years and they put me on Anton gabapentin and it's more than half of my pain I mean I can't believe it it makes you a little bit like a zombie a little bit a little more out of it but this is the lowest pain level that I've had in years and it's only my first day on the wrong button so this is certainly hopeful maybe I can go back to work part time

"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.

"The only updates i have"

I know this is far more boring then when I was blogging about violent crime and such!  I am just beginning to feel safe.  Safe enough that I have been decorating even though I have no plans to stay in the apt. long term.  Bought some pretty tablecloths and vases and today I bought a plant that is a mix of many gorgeous flowers.  Hoping to keep it alive. 

I'm home a lot and I love lots of color.  beginning of may I will buy some fresh flowers too.

So, I'm only getting out every other day.  I never know what the day will bring.  i.e. yesterday I woke up naucious again with a very severe headache.  Your too sick to sleep and your too sick to stay awake it really feels like torture.  I did two doses of the migraine medicine but it didn't kick in til evening.  I don't do much in the way of sweets I have lost a lot of weight.

Got in with the g.i. doc and asked him if we can do the colonoscopy/endoscopy as an inpatient due to me not knowing who to ask to stay with me all day.  They won't do it unless you have someone babysit you all day.  The doc said "there is absolutely nothing I can do to help you until you figure out how to get these tests"

Despite his incompetent support staff he is not.  He is very compassionate, I've met him one time before and he has great bedside manner.

I'm also going to go to an orthopedist to try to find the source of:

severe knee pain
severe right shoulder and arm pain
severe tailbone pain

The pain meds are not adequate enough for me to be able to leave the house for more then 4 hours in a day.  As I've said before I will not make a life long commitment to life indefinitely if it is my fate to live each day all day in excruciating pain.

"Being "negative"

I know to some people if a person mostly talks about unhappy stuff then they are being "negative"  I do not see myself as a negative person despite all the sad stuff I tell you about.

I'm getting out about every other day.  Between nausea and severe stomach pain undiagnosed with extreme weakness I can't do much.

Sometimes I wonder if others would just accept their lot in life?  i.e. this is the first time in 9 years I've had a safe situation.  should I just accept that and not try for anything better?

I do have a nice room and cable, yeah that's about it.  Would that b enough for you to be happy even if you were still in poverty with no adequate transportation?

As I said it looks like there is something very positive coming but I can't get excited until it actually happens.

12/28/02

Looking back at 12/28/02

I am renting an apt. in an old house in Mt. Washington.   I do not feel safe here because their large dog threatens to attack and bite me when they aren't at home. I just moved in and it's terrifying because it takes my entire disability check and a portion of my earnings through babysitting.  I have untreated lyme disease. I do indeed end up homeless by 6/03.

12/28/02  Paper moon diner

Paper Moon is becoming my favorite place to eat with an atmosphere that is very conducive to dining alone.  I'm getting really scared.  Now that I'm monitoring my flu-like symptoms I'll bet I run a fever daily.

I have daily sweats, chills and fevers.  What I thought were panic attack symtoms may bave actually been lyme disease.

chronic low ab pain
diffuse musculoskeletal pain (joints and muscles)
chronic ear and throat pain
sweats
fevers
chills
very weak
crushing headaches that last sometimes more then a week
coughing
largely bedridden
coughing up blood

I'm scared.  I may up end up homeless again due to high housing costs.  It appears I'm in fairly healthy environs for the time being.  I drag myself to work (nanny) and just barely get through the day.

Will I make it to age 40?

Will I need a health care aide like Byrdie does (she has lyme disease)

should I move into an intentional community and make sure I'm taken care of?

"Current housing as compared to the past 20 years"

Despite serious electrical issues for the first 7 months, extreme noise on certain days, and a huge ordeal to get anything fixed (I need new washer/dryer) if I compare my current situation to any of my situations between 2/94 and 4/2013 this is the best one.

This is the only place where  it's homey enough that if I need to stay home and rest or nap I can.  I just tried a different kind of pillow and did not wake up as many times in the night.  (currently I have 30 bucks to last 2 weeks) but next month, I will buy the $60 foam topper for the mattress as even though this mattress would be a good one for a healthy person, my leg muscles hurt a lot and I have to keep changing sides............................

So, I had forgotten that there is an actual name for one of my symptoms  (I googled it last night) chostochondritis.  It is commonly  seen in folks with fibromyalgia and is miserable because it never goes away.

It is severe chronic rib pain and tautness that sometimes makes it impossible to take a deep breath.

I'd say that maybe 3 days a week I'm very weak and don't go out at all due to not having a car.

Watched the latest episode of the little couple last night and jen described the symptoms she has with the inpatient and outpatient cancer treatments.  I have every single solitary one of them.  I will post the episode onto my blog.  No, I don't have cancer.......................................................

Something is coming up soon in my life that is very positive and will raise qol quite a bit.  Even after it happens I won't be able to tell you all what it is because of a handful of men who are reading my blog and who absolutely do not want the best for me.  That is all I can say for now.

"Health or not"

I was hoping to work part time but I've got severe rib and stomach pain that never leaves, daily severe headaches, and at least one day a month where I'll just vomit all day.

Still haven't seen the g.i. doc due to incompentence on the part of the support staff.  But I got yet another appt. which is in April, and I'm on the call list because I told them that this is urgent.

I'm glad I'm getting near my target weight however 50% of what's getting me there is chronic illness.

"Health Update"

Initially when I began blogging I didn't expect to be talking so much about my poor health.  But it is the deciding factor on whether I have quality of life or not, which you know I do not.

I have been chewing on the right side for 2 months because my insurance doesn't cover dental!  the entire left side of my mouth hurts and I assume I have cavities.

I had the x ray done of my entire back, hoping to determine why I have such debilitating back and tailbone pain.  At this point all I know (from older diagnosis) is that I have arthritis of the neck and spine (and probably knees also)  I know I have degenerative disc disease and coccyxademia. 

I have fibrocystic breasts which has been so pain ful the last 10 days I can barely leave house or get dressed.............................

My right knee is killing me and I often limp.  It hurts to stand and to walk

The pain management doc raised the meds a little bit.  This last time they had me see their n.p. and she was brilliant!  I told her that if the meds don't work this time then I will try the mmj again.

It's critical also that iget an eye exam because folks with severe myopia are at higher risk of retinal detachment.

Last night I don't know where my neighbor was but I slept through  the night which can only mean that her and her kids were not there.  If I slept like this every night it would make such a diff. to my quality of life.

"No drop off in readership"

So despite the fact that I haven't had anything new to share in quite a while there has been no drop off in readership, which is great!

Bought a space heater but the room still won't stay at a steady temp through the night so  all I can do I really catnap.  I mean the other thing that wakes me up is leg and arm muscle pain and limbs falling asleep, so I have to keep changing sides.

Like I said, I ignored the advice to go in to the e.r. for the g.i. problems and am still alive.

Exhaustion weakness and headaches mean that I probably have only been out of the house less about 7 days this month, roughly.  Definitely not consistently well enough to work part time.

No funds to go to warmer climate can't imagine when that will even happen.

"Weather/weakness"

This month I have only been going out 4 or 5 days a week.  Some days I am too weak to walk and have to go home.  Yesterday I was only out an hour when I realized I was becoming very weak so I had to head home.  Other days I have to stay in due to the snow and wind.

It has not been much fun although like I said I do have cable for the first time in my life and I am enjoying it immensely.

I have been unable to get to p.t. or o.t. due to weather and other hold backs.  Like I told you the walking and bussing takes everything out of me, so it's rare in winter for me to be out for more then 5 hours a day.

There is no doubt I would be doing many evening activities if I had a car.  I still badly want and need to get to a warmer climate.

"Still in very poor health"

Definitely dissapointed that the mmj hasn't helped yet.  Because i am so sick, i now only leave the house for 2 to 5 hours each day as opposed to staying out all day.  The only break from suffering is basically when i'm sleeping.  I'm definitely getting more sleep then i did when i wasliving with  my seriously mentally ill roomate from 2/1 to 4/26/2013-so in that regard my qol is a little better.

This is still by no means an acceptable quality of life.

"Weak stomach? don't read this"

So the deal is that I'm getting migraines nearly every a.m.  Insurance only allows 9 pills a month, and sometimes it takes 2 pills to knock out the migraine.

So, I had the one on fri a.m.  that came back fri. night.  I ate for the last time at the mission.  I tried to sleep off the fri. headache which did not work.  It turned into a skull crusher.  The kind where you can't talk in person, on the phone, or even watch t.v.  all u can do is just suffer.

I vomited for 10 hours. And decided to fast.  Easy to do since I had run out of money and there is no food in house.  I've been very weak since, only able to leave for 2 hours yesterday. 

Although it has subsided it has not completely gone away.  Someone has started smoking in my bldg. (lease violation) and the smoke is coming into my place which might be why there are more headaches.  Still very weak.  Still gotta say that this is NOT AN ACCEPTABLE QUALITY OF LIFE.

The mmj card has still not arrived but I know that it will someday.