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

"A typical day"

With lyme and fm (fibromyalgia) the moment I awaken I have excruciating pain.  I can't open my eyes, they burn so bad I can't open them til sometimes 1 p.m.  Although the doc gave me drops it is almost impossible to put drops in my eyes.

So today I awoke with severe rib and stomach pain and a severe headache with severe bodywide joint and nerve pain.  This is one of the reasons why I can't see any point in dating.

Tonight, was wonderful.  I chose an event from the newspaper called "topics for the new millennium" it was on the slow foods movement.  It wasn't a lecture but a conversation.  A few folks came up to me after wards and said that I'm so educated and well informed and learned a lot from me.

When you're sick you really don't want to leave the bed, but if you can you don't regret it.  Even at this moment I have severe tailbone pain and it's really hard to even sit down.  It's crazy and depressing most of the time.

"Nearly impossible but fairly busy"

So, it's nearly impossible to get out of bed.  I'll bet that few middle class people would tolerate this situation.  Got into bed at 730 p.m. due to severe sleep deprivation.  Constant banging from the neighbor.  She is a chian smoker.  So, every time I'd drift off I'd be woken either by banging or by smoke.

I spray with Lysol , burn incense, turn on a.c. open windows.

It's a lot of obstacles but even if I do move there is no guarantee the same thing won't happen.

I've tried 3 different support groups but probably won't return to any of them.  Any time groups are peer led they tend to b quite unprofessional.  Then neediest and or most domineering talk for  most of the meetings.  I think all you can hope for is to meet one or two folks that you have some things in common with and exchangephone numbers.

Today, I showed up at a free class that I took in 2011.  Chronic disease management.  I was disappointed about who is teaching it this semester.  She read out loud from her notes for the entire 2 hour class!  There was a break and I really hit it off with one of the attendees.

I have to decide whether or not to go back, because I like some of the folks in attendance.  I decided that I can't tolerate listening to her read out loud largely because she reads like a 10 year old.

Conversely,she is having someone take her place next week, so I will sho.

There is an even in an hour which the organized asked us to register online.  I didn't want the hassle, so I made some 5 calls trying to register over the phone with no luck.  So, I did try to register on line and had the librarian look at the site and she had no idea how to get registered.

I finally got through to the organized and she said it's sold out (well free but full!) and that I shoud just come and see if there are enough no shows to come.  She is an author speaking about her memoir.

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The situation with the pain is still I consider very serious, I still need to find a neurologist and a rheum. so I can find out how far the arthritis and nerve damage have progressed.

"I am technically still alive"

I was homebound 90% of the time for the month of May.  Between the headaches, the severe nerve muscle and joint pain as well as the wildfires I have been unable to get out.

I tried to go out twice during the fires, not knowing anything about air quality related to fires, and my nose burned, my lungs and throat blew up like a balloon.

The air has pretty much cleared but I still can't do much of anything.

I have continued to hand edit my book and I wish I could afford a home computer.

Watching a lot of t.v.

Sat in on a free writer's group.  The "teacher" said that she does not like to read.  She actually read out loud and really struggled.  I can certainly see why this class is free it really sucked and I won't go back.

"A synopsis of 20 years"

It is still true that practically nothing works.  What if, for 24 hours a day, absolutely nothing worked:

i.e. the road is blocked off

you ran out of gas

you were in the check out line 20 minutes you had 3 items

you have no transportation to the food pantry

your car broke down you are supposed to be at the interview today

I could go on and on and on.  Those are hypothetical examples that I feel sum up my day to day life since 94.

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Here are actual examples from the last few months.

I was assigned a medical marijuana caregiver.  The caregiver is your "supplier" and he is a grower.  He stopped coming around after one month.  He doesn't answer calls.  That means 2 things:
I can't continue with the mmj due to having questions and concerns and no one to as

also it means he has been given license to grow FOR ME but is not giving me any product.

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I tried a new pain mgmt. place.  Now that I have made calls to try get a new caregiver I have been told that I must stop the marijuana immediately or the pain management doctor will lose his medical license.  He will test my blood to make sure I am complying.  So now what I have to do is, I've decided to try him for a couple of months, and if in the end I think I should go back to med. marijuana I will, however, I won't be permitted to until I use up all the pain pills and let him know.

This is so typical America, typical poverty.  The minute you get one ball rolling you have to drop it almost immediately.

What's even stranger is, even though the last pain mgmt. dr. saw me for free, when I was done with this new dr. the recep. told me I owe 145 dollars!  WHAT?!  She was seething angry that I didn't have the money nor did I understand the billing.

The dog barking problem next door was never addressed

mgmt. never did the repairs in my apt.

I called for emergency dental but nobody is answer the phone.

So, no, I am not "playing the victim" but I am trying to illustrate how every single thing is grueling.

today is mild and sunny so I feel a little better but I have stopped sleeping at night it appears my meds have stopped working.

the g.i. dr. cancelled my emergency appt. because I told him I won't have the 31 dollars for another week!  Most of the time I am exhausted by life and much of the time I don't have much desire to leave the place.

because I am carless I am regularly approached by street alcoholics and beggars....................................

"Weak stomach, don't read this"

Very very weak today.  But it's a vicious cycle because the more you lay around the more you begin to develop other health issues (which I am)

So every day for the last 10 days or so I have awoken with a headache so severe that I could not leave the house until the imitrex did it's work. However, tues a.m. headache was so severe that the meds didn't work and I was viciously nauseous all day with about 8 hours of vomiting.

I think it's fair to say that I'm so sick that it makes it nearly impossible to run around to doctors.

My heater hasn't been working right and I have been using the oven to heat the house as long as I am awake.

I read yesterday that the American lung assoc. warns against it due to possible carbon monoxide poisoning.  when they mentioned nausea vomiting and headaches, I figure I better rush to wal mart to buy yet another delonghi heater rated the safest space heater on the market, and stop using the oven no matter how cold the apt. gets.

So, there you go.

"Pain management clinic"

I'll always tell u the truth, but I frequently have to change names or addresses that sort of thing.

I like to pay attention to numerology even though I don't always understand it.  The assistant at the clinic (who gave me wrong directions and a wrong address)

told me on 10/14 that my appt. is at 1014 elm.  Guess what suite?!  He said 1014!  (he was wrong about the suite)

anywho it is a wife and her brother and those are the only employees.  The brother is very unprofessional and it's a weird set up.  I knew his first name but I did not know whether he was an aide or what the deal was.

He asked me to sit in a particular seat.  I refused because it was set up in a way that if anyone came in I would have gotten hit by the door.  He said "by the way, my name is rob"  I had already finsished all the paperwork and mailed it in.  When he asked me for my insurance cards I only gave him the medicare card since I knew his clinc would not accept Medicaid.

His attempt at taking my b.p. appeared to be his first ever.  He was so awkward I asked him exactly what it is he is trying to do?

I stood on the scale and it said "93"  He said "we don't do pounds, just kilos!"  He tried to get a height measurement and I said "I'm 5'5" He said yeah but I need meters not inches!" (weird)

He stayed in the room during my exam and interview which took nearly 2 hours.  The doc asked me if her brother can "take notes"  (do I have a choice?) I said it would be fine.  But the 2 of them had a very weird dynamic because she wanted to spped through the questions and he kept interrupting.  Sometimes he would tell me the opposite of what she said.

She is a phenomenal doctor.  It was the most thorough exam I have ever had.  She asked me why I have nerve damage?  I said "Well, it is most likely because I am a starvation survivor"  She said she is sorry but she is sure that my hypothesis is correct.  She asked me to try to describe it and I said that it's like thousands of bees stinging my hands and feet 24/7.

She does not recommend pain meds for fibromyalgia however will allow me to take a low dose.  She made recommendations for the marijuana that are different from what they told me at the dispensary.  Bottom line is I don't agree with doctors on every single point, and no doc is going to force us to take their advice.

I do however feel like going to appointments or doing much of anything is really like "going through the motions" because I don't really have hope for any area of my life.

"Visiting the new medical marijuana dispensary"

So, the staff were fabulous and very very friendly and knowledgeable.  They had me fill out a variety of paperwork and disclaimers.  I had to agree to not operate a motorized vehicle!

I said to the clerk that "it is a very gray area and how on earth are authorities going to enforce it when

"marijuana is your medicine, and a car is your mode of transport!"

I told the clerk that I've tried mmj in 4 different forms, and while sometimes temporarily relaxing it has done nothing to lessen the everpresent excruciating pain.

She recommended "granddaddy purple" and let me smell it as well as other strains.  I looked at the prices of items and mmj is quite costly.  I did not have enough money to make a purchase, however I do still have a "caretaker" who this far has been my "supplier"  (SOUNDS SO ILLICIT!)  In the end I feel the best bet would be staying with edibles because of my sensitive lungs.

I will keep you informed!

"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.

"Sleep as much as possible"

 I stay in bed and sleep as much as possible because it is the only break from this excruciating body wide pain and crushing weakness.

I still have not received my medical marijuana card, but it's coming soon.

"Myth, if you are poor you need a couselor"

My stress is still at heart attack levels.  I told you i am essentially owned by my landlord, and a slave to public transportation.

As a condition of being housed i am required to get counseling.  The counselor would need to accept medicare or medicaide AND be on a bus line.

Now, having a counselor in and of itself is not the issue.  The issue is that I have this protocol that iam supposed to be following to "have a better life"

I KNOW what I NEED!  AND I KNOW WHEN I NEED IT!

I want my focus to be on pain management and exploring this potential cancer issue, but no, I have to do things in the order that these agencies are asking me to.

I explained this situation to a counselor on the phone and she said it was ludicrous and she can't even imagine having to do things in that order.

"Update on the migraine"

So, by the morning of the 11th day of the migraine, it was gone.  And that was the day that the insurance kicked in to pay for my new package of imitrex.  I haven't needed it but i'm sure i will.

If course there are always many serious health issues with me that never go away some are scary but most of that i am not comfy getting into on the blog.  All i can say is that it keeps my quality of life unacceptably low, all of this mess.

"Day 9 Migraine"

So, what if you are already in excruciating and chronic pain and then you have serious fall?  This has been unreal!  When i am at home (and i reckon i've been living this way since 2000 since being diagnosed with lyme) i just lay in bed and transfer the ice pack from body part to body part!  Sometimes after doing that i have to take a hot bath as well.  I have considered going to the e.r. for the migraine, or the mental hospital to get away from my roomate, but thus far i have done neither because hospitals are also such oppressive places......................................

Just living hour to hour really.

Insurance won't cover my imitrex until 2/21...........well i've made it this far!

"Not Mr. Roger's neighborhood/Mommy Dearest"

The drunk guy at the bus stop today told me that he liked my voice.  He sat next to me and spit on me when he talked.  This area has had tb epidemics in the past spread this way.  He told the passenger on the bus "pay attention to your own god damn business and fuck you and don't look at me"

At the depot I met a 23 yo who is in excruciating pain 24/7 like me.  We talked about being torture survivors.  She said that her mother sold her off as a sex slave when she was very little.....................................

I'm back

Someone broke into my email and locked me out of my blog!

  But I never stop writing. I've been busy going to specialists and waiting for test results.  If it weren't for the ice, wind and cold  I could walk to 2 of my docs, and my nurse practitioner.

Anyhow, "they" thought I had cancer but when the biopsy results came back it turned out I do not.     Believe it or not, the concept of cancer did not scare me.  In fact I had decided (just in case)  not to do chemo. In Barbara Ehrenreich's book "bright sided" I learned that she's not a fan of chemo either. 

I've received some 3 new diagnosis over the last 2 months. I am having big trouble with my lungs, as the 4 people below me smoke very heavily.  I can't identify what they are smoking but it's definitely more then cigarettes.  Chronic bronchitis sinusitis and pleurisy.  I'm required to go for breathing treatments.  ;(

I've inherited my birthmother's lung sensitivities.   She is also a non smoker but is tied to oxygen and only 66 years old. 

 I've been largely bedridden with different problems, including complications from a procedure I had to undergo. Nonetheless, I have still managed in the month of Dec. to get treated at a nice restaurant (by a woman of course, men here are more broke then I am), go see the movie Hugo, the play Nickel and Dimed, and the local Christmas parade.

I also sang for 1/2 hour with the city's "big deal" choir!

I have had my apt. broken into and worse; but I cannot go into details electronically.

Oh by the way,

"Merry Fuckin' Ho!"

Chronic Pain

I've barely breathed a word about my health to anyone in the last 20 years. Really no one but me has any idea of what day to day life is like for me but me. I am 98% bedridden by pain and crushing fatigue. I can no longer sit for more then a few minutes.   The key reasons for my spinal problems are the trauma my spine has incurred as a taxi, private auto and bus passenger. I can't even tell you how many times I've been whiplashed, thrown from my bus seat, fallen on the bus, you name it.

Well, the diagnosis is coccyxademia, low back pain, radiculopathy, neurongenic and claudication. What a mouthful!  Some of these words probably mean the same thing. (written on a form but not explained, I'll google it) He said: "You did fall, didn't you?" It was hard for the Dr. to grasp that the traumas are a result of riding buses. I do remember falling into a metal bar between 2 bus seats in one of the incidents where the bus lunged forward. These kinds of falls are daily, as the drivers are so wreckless. They speed over potholes and slam on brakes at every bus stop. After you put your money in the fare slot, the drivers lunge/jerk forward before people can get to their seats. The taxi drivers have also whiplashed me lots of times.

Anyhow, the doc. recommends physical therapy, a donut (something to sit on) and aleve. If that doesn't work then they offer injections for pain. Something I've never been offered in my life even though I believe most Americans could never have withstood the kind of pain I've been dealing with for so many years without pain meds.

The ironic thing about physical therapy is that I'd have to ride the buses to get there. Over the winter. It's unlikely I'll do it. I'd definitely do it if I could drive there.

Still aggressively seeking a place to live. Still considering Berkeley and N.Y.C. where public transit is so good. Will keep you informed.