I am not my disease.

I am listening to the TV show ROYAL PAINS. A character is making a speech about his having MS. "I am not my disease." he proclaims. "No one is."

He is right. Of course there is so much more to us than our illnesses, or in this case, my pain.

The doctor, Dr. Hank I think he is called, tells this character, "Maybe it is not MS. It could be Lyme disease." And this man, the face of MS (for the purpose of the show) and the face of 'my disease is not me." yells at Dr. Hank. "Yes it is. I am MS. I am my disease." A very quick change of truth, or an acknowledgement of what he knows in his heart of hearts.

I do not say to someone I have just met "Hi. My name is Carol and I have chronic pain." anymore than most people would announce they have MS, or cancer, or even, unless it is an explanation about why they do not want to shake hands, a cold.

It can come up pretty quickly though. "What do you do?" "Where do you work?" Those are usually the first questions asked of someone new. A way to get to know them through their job title. And are we not described by our job titles? "I am a doctor." "I am a teacher" "I am disabled."

The first two answers tend to get an "Oh really, how interesting." The doc is asked if he has a specialty (and hopefully not can you look at this rash on my hand?"). The teacher gets the query: "What grade do you teach?" The "disabled" does not get the same interested reply. "Oh, I am so sorry." Sometimes it is the awkward "But you do not look disabled." The naming damage is done. I am not the interesting one, the creative one, the funny one. I am the disabled one.

The titles skew every relationship, at least at the beginning. The doc is treated with more respect, not because of who he is but what he is. The teacher looked at as a helper to children, someone with a definite place in the community. The disabled as someone who needs to be treated with kid gloves or sometimes just ignored or marginalized. After all what questions can you ask us? Not the same as the starting questions you ask of the professionals. "What do you do?" you can still ask me. "I make greeting cards." "I sing in the choir." I speak 7 languages (no, not me but someone.)

The pain, the disability is not me. There are times when I feel or am made to feel I have to say it louder, when it must be proclaimed: "I have a disability." "I am disabled."

Not to make it my self definition but for you to accept what I cannot do, as much as I hope you will accept all I can do. And me.

Narcotics are not fun.

Last night I wanted to write a post but my eye was causing me a lot of trouble. The idea of sitting down and using it consistently to write, then read and edit, just seemed way too difficult. The idea of taking a codeine that late at night, it was around 11 p.m., seemed like a ridiculous thing to do.

I started to think about the way I take the pills. I am only on codeine with tylenol. It does not do a whole lot for me. I think the main reason I take it is so I can feel I have some (false) control as the pain increases. "Don't wait until it gets bad. Take it prophylactically.", I tell others I know who are in pain. Good advice but a very clear example of 'do what I say, not what I do".

It starts. Maybe it will stop soon, I think, and wait as it accelerates. By the time I decide I have no choice, I must take one, there are no longer any brakes to stop it. By the time I 'give in' (which is how I think of it) it is often too late for any help. Then I either give up and do nothing until it subsides, which can sometimes take hours, or take 2 and sometimes 3 pills. It becomes a waiting game: which will go away first, the awful narcotic feeling or the pain?

I hate the pill. I hate the feeling: cloudy, dry mouth, a specific kind of what I call 'codeine headache, but sometimes it does seem to help with the pain.

It is hard for me to know. Maybe it is time, did the pain wear off on it's own? Is it that I have reduced or stopped whatever I was doing that set off the pain in the first place? Because I do not know there is no way I can not have the drug at hand at all times.

I check my pockets and purse before I leave the house. My fingers feel around until I hit the circle that is the pill. "Ah, okay. Now I am ready to go out."

I think of my aloneness and lonliness. If I could find a way to meet people, if I could find a group, some kind of meeting where like minded people go, maybe I could make some friends. The answer is always the same: Looking at all those people, even if only 3, would be too hard.

It is one thing to go to church and choir rehearsal. The trade-off was a given - you want to sing, you have to take the codeine. That's the price you have to say. Fear of the pain and the codeine-itis stops me from doing it elsewhere.

That old line 'Today is the first day of the rest of my life.' needs to be my new mantra.

And the change I need to make, the first one, is agreeing within myself that taking the codeine is not a surrender, is not a failure.

I took one to write this post. A codeine at 10 in the morning? I can't do that. That was my thought. The new one I hope to keep: "A codeine at 10 in the morning? Yeah, sure, if I want to write this post, if I want to work to expand my life."

I let the pain shrink my life. There is nothing I can do to fix the pain.
The medication is a chance to expand it a little more. Let's see what happens.

Narcotic contracts. Am I patient or potential felon?

I was at my pain doc's yesterday. While I was there I looked at the pain opiod therapy policy paper given to many patients. Theirs was titled as policy. I have seen them elsewhere titled as contract.

I understand all the problems related to pain medication, especially now that prescription drug abuse is allegedly at an all time high.

I hate that it, along with the "war on drugs", is being taken out on pain patients.

My meds are at the lowest level of narcotic. I have been lucky in that my doctors have always understood my request to try more potent meds. Invariably they do not help and I just go back to what I have been taking for years. I have never been asked to sign a contract about how I will take and use these meds.

When I read these policies and contracts, even though I have never been asked to sign one, my blood boils.

If I had diabetes or another disorder that required a daily drug I am not seen as a potential abuser and poseur. In fact, now that I think of it, diabetes is a perfect example.

One of the contract promises I have seen reads "I will make my month supply of medication last for the full 30 (31) days. If I use up the drug before the 30 days I will not be able to get more until the beginning of the next 30 (31) day period."

Pain patients can have better and worse days. If a worse day they may need to take an extra pill or two but if they do, then they will not have enough to cover one or two more days until the end of the month period.

A diabetic may eat sugary foods, be under stress or for other reasons their insulin need goes up. To my knowledge they are not told, 'well, tough'. They get the extra medication to make up for the time or two they had to use extra. Why are we treated differently?

"I promise I will not use illegal drugs while taking the medication prescribed by the pain clinic." That should be pro forma for any docs office. After all, every physician should want their patients to promise not to use 'recreational' drugs.

The worst of all, as far as I am concerned, is the extracted agreement to random drug and urine testing.

Because I have pain I have to sign a paper that says I promise not to be a felon. No other specialty requires this. No other specialty treats us as guilty until and unless proven innocent. No other specialty treats us as less than what we are - patients, in need of help, not judgement and implicit name calling.

Losing my elasticity?

I am going to vacation bible school tonight. I know it will require at least one dose of codeine.

It is fun, not something that I expected it to be, so well worth the time. A lot of socializing, interesting conversation and thought provoking ideas. Also, the pained part: a decent amount of trying to look at more than one person, bright lights, and at the beginning and the end, mostly, a flashbulbs going off as the church histoirian takes photos.

It is a beautiful day. Also well worth the going out and doing something.

But that means driving in the bright sun, looking around: today's errands, the grocery and probably Walmart, using my eyes, provoking the pain.

I remember when the pain was at its worst. I was on high levels of narcotics and in horrendous constant pain; but I got done what needed to be done. Pressing forward with my medical malpractice lawsuit by doing depositions, interrogatories, research, and writing my book, high intensity eye work both but both needing to be done, and so they were.

I popped pills, at one point up to 14 grains of codeine a day (4 - 6 is the normal dosage) accepting the awful feeling they gave me. I had no choice - I had work to do.

Today I think about going to the store and then to the church meeting. It is too much. I do not want to take more than 1 pill, for the whole day. I do not want to make the pain worse by checking out the store aisles or letting the sun beam into my eye, setting off the light sensitivity pain, making the eye usage harder and the pain more severe, and harder to shake off.

It bothers me. Why could I do it then but cannot now, or really, the question - why do I not want to do it now?

Of course the easy answer is who wants to cause themselves pain if they do not have to? It is not necessary to complete the errands today. Nothing I need to get is of vital immediate importance. It can wait, making 'school' tonight the main painful thing I will do today.

A part of me gets mad at myself. Why could I do it then but now it just seems like too much trouble? Is it age? Maybe. 20's, 30's then, 50's now. Yep, maybe it is age.

Is it the tired of putting myself in pain, of placing myself in situations that I know will make the pain worse, or, if a good day, has not yet started? Yes, maybe it is the act of being my own torturer.

There is so much I want to do. I hate the being alone and the lonliness. I deplore the inactivity. The difference, I think, is then I did what had to be done, what must be done. The store, the gas station, even medical appointments - none of them will make much of a difference if I put them off for a day or two. The hatefulness of the not doing may come down to the aloneness - most days, if I choose not to go out, that's it, I see no one. On a day like today I have the church to look forward to for tonight.

As I write this out my thoughts work to answer the question. Maybe it is the lack of connectedness to the world but also the lack of stimulation, of seeing other people, of having things to think about outside of myself. Maybe, one of the reasons I could do it then and less so now is because I have nothing of enough importance in my life that it must be done, the pain be darned. What a sad thing.

I have no answer for it. Just a 'here is my thought' for today post.

Things I never think about that make me go Wow(!).

I was driving on the turnpike the other day. Not much going on, my mind looking for things to notice or think about. I was in the left lane, folks behind me, so it was time to get back into the right lane. I turned on my signal, moved the steering wheel slightly and the car just glided over into the right lane.

What a cool thing is that?, I thought. I barely have to maneuver the car for it to do that. I never thought of how easy it is to manage my car. And how manageable and agreeable it is to being maneuvered.

That started me thinking about other things that I rarely if ever think about, or maybe even notice.

How cool is it that someone speaks to you and immediately your brain translates the words into understanding? And how cool that my reply comes instantaneously?

How cool is it that a nose, a mouth and 2 eyes can be the same and just different enough that almost none of us look exactly like anyone else. How cool is it that each of us have faces so individualized and recognizable?

How cool is that that I can write an email and someone halfway across the world can read what I write in just a few seconds' time?

How cool is it that someone who plays a musical instrument can translate the musical signs and notes, send them down to their fingers, and play an instrument? Or for a singer, can translate and without active thought instruct the voicebox to make the different notes?

How cool is it that pets can understand their names and become members of the family even though they are 'just' animals?

How cool is it that one day we can be sick as a dog from some little tiny germ and then within a few days feel as though we had never been sick?

How cool is it that there are all kinds of life that are so tiny we cannot see them but they still have ways of letting us know they are there?

Funny. It was the car that gave me the one thought but each additional one led me into the path of another. And how cool is that?

These are just the ones I can think of at the moment. What makes you go, wow, isn't that amazing?

Bad day, pity party.

I was at the dental clinic today. I had a root canal done, part 2. It was not bad. (I am always surprised. The whole process is not bad or painful, absent the shot of novacaine - talk about ironic, the thing that hurts the most is what is used to take away the pain.) Even though I no longer have the touch induced pain of the tn I do have anaesthesia dolorosa (painful numbness). My main fear is of being touched on the left side. The numb is unpleasant but, even after 12 years of no triggered pain, my mind still carries the fear.

Being there and talking about the costs of the procedure with the dental student (she is a dentist but a resident in endodontics - she and faculty keep telling me that when I insist that faculty come check her work: after all in a hospital, the surgical resident is an M.D. but he is also a student. He never does anything big wthout the attending double checking his work. This, to me, is no different. She did a good job btw, I thought so and so too did her faculty advisor dentist.)leaves me feeling despondent and angry - at myself and at my life.

I never expected to be poor. I travel an hour each way to get to the ckinic because it is the closest to me that costs the least, but the least is not little. The root canal was $250.00, less still than many other clinics much less a private doctor. The crown that I should get will cost an additional $350.00. Between the 2 that is almost one full month's disability income.

I hear the $350.00 number. Inside I start to cry. I do not have that kind of money. How in the world did I get here? I think, sobbing inwardly. My siblings are all doing well, to my knowledge. I know for sure 2 of them are. The third probably is. Had they ever acted like family I could go to at least one of them for help.

My mother tried to leave me extra money when she died. She told me "I know your sisters and brother will not help you so I am leaving you a stock market account." After all, they had not been there for even one of my surgeries.

My father would not lend me money for air fare to get to a surgeon in California, (a surgeon recommended by my neuroopthalmologist in Phila. I went to a couple of states for operations/procedures but they were all recommended through Dr. Schatz or other surgeons after they operated on me. It is funny, even writing about going to California my first inclination is to defend it, making sure you know I was not doctor shopping.) He told me to call my brother. For some reason he told my father he would lend me the fare.

David and I had not talked in years. I called him anyway, not having any other option. "Charlie (that is what I called my father) told me to call you and he said you were willing to lend me money to get to California." "Oh no." he said. "To do that I need to talk to the surgeon first and besides I meant money for a psychiatrist."

I was not going to let him talk to Dr. Wilson, the surgeon. After saying "money for a psychiatrist" I had no idea what he might say to him to try and convince him not to operate.

Another time, after I lost one of the implants to an infection, I needed to go home with an IV port so I could give myself intravenous antibiotics. The doctors told me I should not go home alone without anyone to help me. Thinking when push comes to shove, family will come through, although I should have learned something from history, I called one of my sisters.

"I have this IV and need to not be home alone. Is it possible I could stay at your house for a few day, maybe slightly longer." "Oh no." she said "Why don't you just go to a convalescent home?"

When they learned of the money my mother left me they got a lawyer to make sure the money did not come to me. There were other issues involved: I did what I was asked to do for my mother when none of the others had even visited her. I saw the severe psychiatric state she was in. I was asked by the trustee of my father's estate to find placement for her because they could not keep her in the rehab hospital for more than 3 days when he called. There was no time to call the others and try to work this out together. A place had to be found quickly.

I went with an RN friend to 10 residetial care communities. I found one that was nice. It even had a dog thast visited the patients everyday. My mother would love having a daily dog visit.

She arrived at the center and I stayed there for about 6 hours for the first 3 -4 days to make sure she really needed to be there. Her behavior and demeanor proved she needed to be somewhere with active nursing care.

The trustee told the family where she was (I think. At this point I truly do not remember how they knew.) When I came to visit the first day they were there my mother was in even a worse state. Each time they visited the nurses told me their visit was terribly upsetting to her and they had to give her extra medicationo to help calm her down. This went on for a number of days. Then, one day, I came to visit and my mother was gone. Without telling me they took her out of the facility, against the advice of the doctor's there and her private doctors.

While she was there I tried to get her declared financially incompetant, and only financially. I had found signed blank checks in her home. Some were made out, in different handwriting, to 2 homecare aides who had worked for her. The only problem was that the check was listed in the memo space as being for salary for work during the time she was in the hospital and they were not doing work for her. I did not want to see her lose, or possibly have stolen, all her money or she would have nowhere to go.

The response from my siblings was to have their attorney tell me they would sue me for the extra money my mother left me. The only way they would not do it was if I dropped the competancy claim. If, and only if I did that, they would make sure she had competant nursing care.

What could I do? I dropped the claim.She needed to hsve someone take good care of her. Which brings me back to today.

I could have continued fighting for the money. Had I done so there would still be money left so I would not be on the verge of poverty, (My income is way below poverty level. I own a home, which is a whole 'nother story that, because of lies and what appears to rise to the level of fraud, may take what little money I have left to fix; and lose me money if I have to sell it. The irony is I bought it for equity.)

When the pain started I had to be on assistance until I could get disability. I was lucky I had worked long enough to have paid sufficiently into the system to qualify. Being on public welfare was humiliating, embarrassing, devastating.

I never thought that at the end of the line I would be back there. I get food stamps and help with my heating costs. No one helps with dental unless you can find a clinic, or have a family that can help you.

I know my story is not unique. It is just as a girl growing up in upper middle class suburbia this is one scenario I never saw for myself. I went to college, worked during college and after, and expected to have a working life, financially capable and able.

Becoming disabled is not my fault. I know that, usually. But then the thoughts come. If I didn't have the tn, if I had a family who would act like one (they actually found another sister for themselves. We are half siblings who grew up together and the half part was never talked about - the father we grew up with was biologically mine, not theirs. One day, after all of this, they went out and found their other half sister with whom they had never had contact and made her, and her mother, no blood relation to any of us, their new sister and mother, if, if, if. And so I write this post today.

I am not going to reread it, I will post it and maybe decide another day when I am not so overwrought by it all, to delete it.

How come you know our language?

Ciao. Ola. Bonjour. Edema. Cutaneous. Abrasion.

My cat, Sassy, is sick. We were in the exam room at the vet's office. I went to pick her up to calm her down. In her fear she scratched me - right across the healing incision from the battery change I had about 7 weeks ago. The vet took a look. "You should see your doctor about getting some antibiotics so it doesn't get infected." Normally I have no interest in taking them, especially when it is 'just in case' but I lost the first 2 implants to infections. I could not afford to lose this one.

A med student, Mike (pseudonym), was doing his rotation at Dr. Rogers (pseudonym), office. He saw me first. I showed him the scratch. I also pointed out a little red area by the side of the left side of my mouth where I have no feeling. "What happened to your face that you have no feeling?" he asked.

"I have a Sturge-Weber syndrome, you may not know what that is." To my surprise he did. The rest of what I explained was mostly unknown to him.
I rattled off the important information. "The feeling was lost from a thermocoagulation rhizolysis procedure - you probably have not heard of that." No. he had not. "I had an MVD", he did not ask what that was or indicate he knew, "that paralyzed the face." I finished my dissertation. He seemed to get the general picture.

Dr. Rogers came into the room and asked Mike to tell him why I was there.

"What does she need to do for this? What does she need to look for?"
The student looked at me. "You need to wash the area, keep it clean and make sure you see no edema." I knew what he meant but had to make sure he knew I knew. "You mean no swelling?"

It is a funny thing about medical terms. I worked in hospitals for many years, started a physician assistant training program, and of course, been hospitalized many, many times. I know the lingo. I do not know the number of times it has been held against me, "Why do you talk like that?" Knowing the words is a problem for some doctors (and other medical people). Many other pain patients have told me they hear the same thing. It is odd that our intelligence and ability to learn the 'language' of med-speak is not as appreciated as if we spoke to our docs in, say, french.

I told Mike "When I started the PA program we were told to learn medical terminology before school started."

We had a book we were assigned, just like the French and Spanish textbooks we had in language class in high school and college. It was no different than any other foreign language I had to learn.

I speak 3 languages: English, some Spanish, and the language of medicine.

Erythema, tractotomy, fusion. Arrivederci, adios, au revoir.