Tuesday, January 19, 2010

The Letter

My mother, yet again is not talking to me since the 13th of January. There is no way for me to type all the reasons why, it would become a novel. To sum it up though, in the most simplest terms, it is because I am still sick. I might have to see a doctor who is not in Albany, because there is not a doctor in the Albany area that specializes in what could be wrong with me. My parents have made if very clear they have no intention on helping me with that. Yet, they would continue to pay for a therapist if my insurance ran out, which makes no sense. It would be cheaper in the end to just see the other doctor and be tested for POTs. When I said it made no sense that they have no money to help me see a doctor outside of Albany, but have money to throw at a therapist, which in the end will do nothing to help this issue, my mother started screaming about how it is "different" and how she is "not going to go there". It is not different if I have something going on that is not mental. So, the argument continued back and forth till she hung up on me. Anyway, so I get this email from my father this morning and then I replied. Sometimes I just was to unleash 20 years of rage, but I can't and try to keep myself under control. Here is the email:


Mom had a cat scan yesterday - good news - it showed nothing -
We met with Dr.Lee her surgeon yesterday afternoon - that's why we have the results so quickly. Dr. Lee told us he would like to go ahead and do an exploratory of the liver surface - He says the cat scan looks inside the liver in layers - how ever it doesn't detect something that might be on the surface - he will look at the surface to see if there is any growths - if there is - he will slice it out-.

Mom's next appointment with the surgeon is 6 weeks out - March 1st - when we will set the date for the exploratory.

Got your bills this morning - they will go out later

All the news for now


My Reply:

"There is no reason why Mom, nor you did not call me to tell me this. I am sorry, but regardless of what either of you think about me at this point, I am still sick and some days still quite sick. My entire life is nothing compared to what it use to be. Many days I am unable to do the most simplest things I use to do.

While neither of you, I am sure care about postural orthostatic tachycardia syndrome, it is the closest thing that could be causing everything happening to me. Neither of you, I am sure, as with anything that has happened to me in my life bothered to even look it up. The "anxiety" I had all these years was never read about either, nor that withdrawal from xanax, which was nothing short of horrific, which by the way could very well be the cause of the postural orthostatic tachycardia syndrome, if that syndrome is indeed what is wrong.

Try not being able to stand for a long period of time without your heart being 120 and then take a shower and have it be 140+, because you are so heat intolerant. I live in a constant state of discomfort, just at varying degrees.

This whole event has shown me a lot about my life and the people in my life. Money is not love, it never was and all these years of paying bills and keeping me at the same level, never listening, never reading anything has left me alone to fight with no one having my back. If my son was sick, not only would I have moved heaven and Earth to help him, not only when he was suffering last year, but I would continue to help till he was well or had answers.

Neither of you have any clue how it is to keep walking into doctors offices and getting the smiles, that all this is "just anxiety" and offered the very pills that caused all this or how it is to sit there, looking healthy and even younger than my age and tell these people I am sick, that I have fatigue so severe that I can't take my trash out on time or keep up with my apartment, as they look at me and I can tell they don't believe me, nor understand what I am saying. After all they have already jumped to "it is anxiety", "it is depression". Try proving you aren't crazy.

I have explained that there is no one who specializes in postural orthostatic tachycardia syndrome in Albany at all. This is not some woo-who make believe shit. It is a syndrome of the autonomic nervous system, a dysautonomia. Because there are no specialists in Albany, if I do have that syndrome, when I get sedated for a scope or anything they might need to do for me I could actually die. My blood pressure could crash and they would have no idea why.

Postural orthostatic tachycardia syndrome would explain the fatigue, since people get wore out because the heart is "running in place" often burning a lot of energy. It causes, vomiting, GERD, other various gastro issues, high standing heart rates, heat intolerance, anxiety, depression, pale face, pupils to dilate out, among a list of other things. Only 30% of people have a drop in blood pressure or faint with it, the other 70% have a rise in blood pressure while standing and a heart rate that increases 30+ beats. There is no cure for it only treatment options. Sometimes it can go away in 2 to 5 years and other times it never does.

Mom tells me there would be no help to see a doctor for that, that you guys are "putting your foot down." It is not like I am asking for designer clothes or a new car. Nor at this point would I even want your help with this now. I shouldn't have to beg and be on deaths door to get my parents help. Keith's family can't even understand what the hell is wrong with either one of you.

Looking back over my life though to be honest it doesn't surprise me at all. Now mom is sick and while I listened about her illness, read all about colon cancer, offered up help to her, worry about her and offered up different ideas to stop the diarrhea ... I do not get the same. I even had told her to have a simple blood test checking for celiac disease, which could also be causing all these issues and does indeed often pop up after surgeries like the kind she had and after chemo. I honestly think you guys think I am an idiot and that I have no clue what I am talking about. First thing I did for you when you found out you had high cholesterol was make different diet plans for you. Neither of you would even attempt to do that for me. I know this because neither of you read anything about anything happening to me over the past 20 years.

Driving me to an appointment and sitting there is not compassion, it is a taxi ride, because I indeed know, that should I have ever fainted in your car and requested to be taken to an ER I would have had to fight for that too. The idea and indeed the full knowledge now, that no matter how sick I get I will sit in that back bedroom suffering alone, while you sigh because I am out of food yet again or when scared reach out to you and you close your eyes, as your face turns that angry red, as you stutter out to me "I don't know what the fuck is wrong with you." is too much to handle and I only pray I never get that sick again. I have no clue when my health insurance is going to end and even if I get a domestic partnership with Keith, to be added on his health insurance it would be $320 a month.

What pisses me off more than anything and just puts it all into prospective is me telling mom "I just want my life back." and her reply "Well you didn't go anywhere before anyway." as if it is ok that I am suffering??

I am so sick of hearing "Well I wasn't raised that way." or "Your father was raised that way." Well, you both had years to change and your childhood does not give you free license to act anyway you want. While I could not deal with that therapist down on Clinton Ave. and all her praying, I will say this, she commented "What surprised me the most is how little your father knows about you." It didn't surprise me at all.

I have told Keith this and I am hopefully going to be putting some form of cheap Will together soon, but should I just drop dead, I do not want to be buried in that plot that you guys have.

I am glad moms scan came back fine, hopefully the scope of the liver will show nothing and thank you for letting me know you got the bills.



Anonymous said...

The lack of sympathy, understanding or hell.. even human empathy you are getting from your parents is heartbreaking to me.

When i listened to your moms voice mail where she says "God!" at the end of it.. honestly- and with all due respect to you.. i just want to shake her and shake her hard. I don't even know the lady and it made me FURIOUS! WTF does she think she is suppposed to treat her sick son like?? Jesus F'ing Christ- lady. Wow. Unfuckingreal.
Ok sorry.. that one just got to me.

Brian- i do wish there were something i could do beyond the occasional kind words and sincere well wishes and hugz sent via e-mail from this semi-stranger/friend that i am.

I myself have family issues and have made myself virtually an orphan because of it.. so yeah, i understand in alot of ways. I know she is your mother and you love her- but good Lordy how i'd love to just give her an earful on just simple human compassion that she and your father seemingly lack.

Seriously. Please don't be angry that i feel this way about your mother. I'm sure she is (or once was) a very kind lady but for some reason she has let your father's disdain and resentment for you cloud her love and sympathy for her own son. Too sad, my friend.

Please know that my words are meant in the most heartfelt way not as an insult.. and i understand complicated family shit too. You have- and always will have my utmost regards and understanding, Brian.
I don't know what else to say, except that i wish i were in a position to help you more.

Do take care and keep us posted, as always. You know how to reach me if need be.

Big fat (((monkey hugz))) to you, guy. Take care.

Brian Underwood said...

I completely understand what you are saying. I have no idea why she has become this way other than the fact that chemo has seemed to change her. My father, now retired, being around her all the time I am sure is not helping.

It is so hard for me to even post my personal problems with my parents because since they pay my bills I am left looking like some spoiled brat. After all they pay my bills I should just get over the lack of compassion or personal help one would expect from a parent.

I have a lot of guilt and have to live with the fact that if my mom just dies that this is how it all ends. At the same time I know I am sick and I can't pretend I am not nor allow people to tell me this is all anxiety or in my head.

If I could change anything I would never have taken that pill. I have more to say about the POTs sometime. If that is what I have, I think it was my lung surgery that caused it back in 2000 and the xanax withdrawal just blew it off the charts. If that is what is wrong. It is only my best guess at this point.

I have had to do all this alone. If you remember I even lied to the ER docs and told them to check me for H. Pylori and that came back positive. I don't make all this up. I am scared some people who read this think I might be lying sometimes about how bad it is.

I am considering getting a copy of all my medical records and blocking out personal info, but posting them so people know I am not just some crazy making this up. I have been accused of being a Scientologist because they are anti-psych drugs.