Monday, September 30, 2013

My mom has no teeth (part 2)

Once I opened the mom can of worms it looks like it is staying open for at least one more post.  Why I am so angry that mom is sick and toothless?  Well after a week spent in self examination it has become quite clear.  She is sick and she does not have to be.  I have spent the last three years doing everything I can to restore some semblance of health to this body and my mother could spend fifteen minutes with a doctor and she could be restored to a reasonably healthy existence.

She needs to treated for type 2 diabetes and congestive heart failure.  Although congestive heart failure sounds scary a little loop diuretic would get her up and moving.  She has two well known and easily treated diseases but she chooses to stay at home and suffer until she dies. I stay at home and suffer, we have that in common, but I have little choice in the matter.

I think in general, if I may toot my own horn, I am a pretty Zen.  I am talented at accepting what life has given me and make the best of a situation. I try and enjoy the only life I have to live and I do not begrudge other people their health or happiness.  For the last couple of weeks I have had a real hard time keeping my Zen, especially in regards to the not begrudging other people their health and happiness.  I am not angry at people that are healthy and happy, I am really f***ing pissed off at people that could be healthy and choose to wallow in their illness.

I know there must be something complicated that goes on in my mothers psyche.  I am sure she is not sitting down and saying to herself I am going to wallow in my illness and suffer needlessly but from the outside looking in it is hard for me to see anything else.  If I take a step back I know there must be some deep rooted fear of the medical profession, especially dentists obviously and I can relate.  At one point in my life I was afraid of dentists and doctors and I know it was irrational but when push came to shove and it was see a doctor and do what he says or die, I decided to see a doctor and do what he says. 

Even though I am doing what doctors say at this point it looks as though I will be leaving the stage of life prematurely.  I am adding this for all the asshats that are going to chime in that we all have to die, well I am aware of that but we all do not have to die living statistically only half of a normal life.  Now next week I am sure I will have recovered my Zen and the posts will again be inspiring about my struggle and I do appreciate your patience while I indulged a little of the darkness that is around.   

Monday, September 23, 2013

My mom has no teeth (part 1)

My mom is old and she is sick and as the title suggests she has no teeth (well at least not many).  I don't talk about my mom much or for that matter my family.  There was of course the exception of my dad dying and that did rate a few blog posts.  Now for the rest of my family that is still alive we are not a particularly close but that does not mean we do not care about one another.  Now lets to get on the path to try and explain the toothless smile.

When I was growing up my mother cared about her appearance and she cared about appearances.  She had clothes, jewelry and the all accessories to match.  We did not necessarily have to food to eat and by we I mean my sisters and myself but my mother always looked good.  My mother has traveled a road that is unknown to me.  It has carried her form the professional who always looked the part to my mother that could now be an extra in Deliverance the movie.  I said we were never close and I am fascinated with trying to understand how she ended up where she is now.  Now where is she exactly?

My mother now lives in a small town that is inhabited by many meth labs and the population is mostly made up of the kind of white trash that run and frequent meth labs.  Some how over time her appearance has come to match her surroundings.  My mother is in her late sixties and wears nondescript clothing that looks like it came from a Goodwill in a bad neighborhood.  Her hair has thinned and her skin looks like that of a woman twenty years her senior.  Of course last but not least in order to complete the picture her teeth are few and far between.   

My mother can not get out a chair now without assistance and sometimes it becomes near to impossible to get her out of a chair even with assistance.  She refuses to use a walker and begrudgingly uses a cane.  She does that old person shuffle and can not navigate stairs.  She recoils when anyone touches her, I have a theory on this.  I believe she has untreated diabetes that has caused nerve damage in her arms and legs that causes her the pain when she is touched.  Her eyes are dry and hurt her so much that she has been using some kind of veterinary ointment that looks like Neosporin.

Her diet consists of warm Doctor Pepper because what is left of her teeth can not stand the cold.  It is not diet Doctor Pepper to make sure that she gets enough sugar to keep the diabetes going.  The rest of her diet consists of fast food of various varieties and of course meals on wheels.  She tells me she does not need assisted living because if she fell and was unable to reach her cell phone (which has happened) the meals on wheels people would find her.  I think at this point I have painted the picture of her current state of being and to what end?

Despite my childhood of neglect and unhappiness she is my mother and for reasons that are complex and probably for the most part unknown to me (denial) I care about her and want her to be as well as possible.  To this end the traditional roles have been reversed and I call her on the phone (I live in a different state) and try and get her to take care of herself.  Mom have you gone to dentist?  Her response is there is nothing he can do because I have an autoimmune disease that is causing my teeth to fall out.  Now at this point I am fairly confident that the doctor that has diagnosed her autoimmune disease is Doctor Pepper.

Autoimmune diseases can cause a lot of damage to teeth.  Here is how it actually happens, the autoimmune disease causes dry mouth which allows plaque to grow crazy and cause more tooth damage.  The treatment, drink water to keep your mouth moist and go to the dentist more often.  Now of course my mother is lying about going to the dentist and of course she also lies about going to the doctor but you can take a horse to water but not to the doctor?


Monday, September 16, 2013

Stress probably not helping much

My friend from my disability insurance company has called again with a series of veiled threats and insinuations.  I have broken down and contacted a few lawyers and probably will end up employing one to deal with the insurance company.  I feel weak and beaten down.  I think of myself generally speaking as strong take care of business kind of fellow.  In fact some people have even referred to me as an asshole and hard to deal with.  Three years into being seriously ill I do not have the mental strength to deal with much of anything.

I am trying to think about it in terms that I will be helping the economic recovery but that is not really making me feel better.  Infirmity of the mind and spirit seem to follow infirmity of the body.  I would not say I am feeling sorry for myself but pretty damn close and what keeps from the dark deep well of self pity?  My wife and her care and comfort shine a light that keeps the darkness away.  It is cliche and honestly sounds trite to me and I am the one writing it but there is truth there that if you have traveled the slow sick painful road to death with somebody that walks it with you gladly you know what I am talking about.

Tuesday, September 10, 2013

Update from todays Doctors Visit

I usually don't do a midweek update but today you get a bonus blog update.  I had an appointment with my pulmonologist who also happens to be in charge of the critical care department at the hospital I go to.  We had to waste a lot of time with forms for my disability insurance but once that was all settled we focused on current condition and the plan going forward.

My current condition is still considered refractory and regressing.  That is the medical lingo for I am getting worse and all the treatments we try are not working.  My doctor feels we are doing everything that can be done but would like me to see a friend of his at the local University Hospital.  I feel really lucky to have a doctor that takes the time to discuss my case with his friends that are also pulmonologists.

She does research in interstitial lung diseases and while she does not specialize in studying sarcoidosis, sarcoidosis is an interstitial lung disease and she does have a lot of experience with it.  She is not sure she can offer anything new but would be happy to consult on my case since my doctor has requested it.  Of course I wish I did not have to consider this but unfortunately my insurance company will not pay for me to go to the university hospital so all the care she could offer would have to be paid for out of pocket.

I am happy to put out cash for anyone that can help me but it is a real shame that I might run into a situation that I could not afford care that would help me.  To wrap it up, I am getting sicker and none of the drugs that are available are having much of an impact.  I do have a doctor that care enough to go the extra mile to try and help me, also fill out a bunch of crappy paperwork for the not so nice insurance company.

Monday, September 9, 2013

Disability Insurance (Evil? Afraid!)

When I was able to work I had signed up for a long term disability insurance through my work.  It has not been easy working with them.  It took a long time to get approved because they kept "losing" my medical records and that is the first incident in a relationship that I would characterize as difficult.

On Thursday of last week they called to tell me that my disability claim was no longer supported by my doctor and that he said in his office notes that I was doing quite well and they were no longer going to be able to pay my claim.  I was crushed.  I had thought that my doctor had understood how sick I was and now come to find out that he thought I was doing quite well, it took my breath away.

I felt lost and alone.  That nobody supported me.  My wife and I are in a financial place where we do not need the money from disability insurance but it allows us to be a little comfortable.  In fact things would be uncomfortable if the disability money were to stop.  Money aside the part that caused me the most stress was my doctor thought I was doing "quite well".

I had my wife go get all the doctors office notes from this year so I could  read for myself what he had been saying.  That is when I began to question whether my disability insurance company is evil or not.  Below I will quote some from the doctors office notes and to preface so I do not have to post all of the notes he is talking about remicade infusions.

Doctor "After the 2nd treatment he felt quite well with improvement in pain level and of skin lesions."

Disability insurance lady did not include the sentence that followed.

Doctor "The effects did not last till the 3rd treatment."

That is the only time my doctor has used the words quite well and only in reference to a short span in which the remicade did have a positive affect.  I am trying to find a reason why the disability folks would just quote that one sentence out of context other than they were trying to manipulate me so they would not have to pay my claim anymore but I can not think of one.  Can you?

UPDATE:

So I called the disability insurance folks today and after I pointed out that the doctors notes did not in fact say I am doing well they told me it was all a big misunderstanding.  Makes you wonder, do I seem like I am easily confused?


Monday, September 2, 2013

Labor Day

On this Labor Day I can't helping thinking that I took being able to work for granted.  I hope I don't do a lot of woe as me posts but I am afraid this may be one.  I started work when I was fourteen and worked until I was thirty nine.  That is twenty five years of gainful employment.  Come September I will have been disabled and unable to work for one year.

I never realized how important working was for me.  I had my complaints just like everyone else.  I worked harder, was not appreciated, was not paid enough, should have more responsibility, should have less responsibility, and etc.  Then poof those complaints are gone and replaced with new complaints that make the old ones seem much more appealing.  New complaints, I can not walk, can not breathe, can not wipe my own ass, and etc.


Now on the other hand I supposed everyone dreams about not having to work and I am no exception but I think I imagined being healthy and a lottery winner not dieing and living on disability insurance.  It is so hard to get up every morning and not be able to go to work.  It is not just that I am not working it is that I am unable to go to work.  I have actually had people say they are envious of all the time I now have.  The pain that drove me from my job still fills my day.

I wont bore you with a repeat description of the pain but it has become my constant companion.  The moral of all of this rambling is that pain will make you miss even the most annoying of coworkers and be sure to enjoy the now because tomorrow is not guaranteed.