I saw the gastroenterologist on Monday. I don't really like her, she came off cold to me and at times it seemed like she was having a hard time following what I was saying and she would put words in my mouth and I would have to keep correcting her. I also don't know what it is about doctors not being able to read a small amount of text that you write for them. For example I wrote in reference to my lung function test. "I had a lung function test, 80-120 is considered normal with 80 being the lower end of normal. I was 72." She says to me as she is reading "OK, so you lung test was normal." to which I had to correct her. Symptoms are breezed over and my constipation issue in her mind became my "chronic diarrhea issue". Then my 30 lbs weight loss last year was asked "Was that because of all the diarrhea?" No, I told her because I couldn't keep food down nor hardly any liquid. Again that was listed on a short list of symptoms. My burning throat became "So, you feel like something is stuck in your throat, like a lump?" No it burns. I was prescribed Prevacid because of "severe nausea" which I do not have and "so I can eat" which I already can. This of course was explained to her already, but people can't seem to follow. I think people hear what they want to hear. Sometimes I want to just says "Hey! WTF snap out of it, sit down, shut up and listen! and for god sakes read shit!" People are always told on TV to bring a list for the doctor, so it is clear and so you do not forget yourself some details. What is the point? It is not like they actually read it.
Anyway, what I did like about her is she seems like a perfectionist. So, I guess if I was going to have a procedure done I would want it done by a perfectionist. I don't know. I just typed that and somehow I am just not feeling comfortable about it now. I was emailing this girl on facebook earlier about my appointment and how I was going to stick with her, but the more I replay the events of this visit, I am starting to wonder what the right choice is now. Well, I don't have to decide right this second anyway and the stuff she wants tested I agree with anyway. So I will continue telling you more..
She wants to do a colonscopy and endoscopy under general anesthesia. Usually these tests are done under sedation. I am unsure why, because she didn't make it clear as to why she wants to do general anesthesia. My guess is because of the problems I had caused by benzos or because she could be concerned about my breathing, which I believe during general anesthesia your breathing is monitored...or because she thinks I am bat shit crazy and just wants me completely knocked out.
I have read that many people have the colonscopy and endoscopy at the same time. She does not want to do it that way. She wants them each done on different days, which means I will be put under general anesthesia twice. General anesthesia carries more risk than sedation and I am not so sure I am comfortable doing it twice. When I asked her why she wanted to do it two different times she said "Because most people can't take the amount of air pumped in for both procedures."
Regardless she will not run either of these tests till I have a full work up with cardiology, including a stress test and a tilt table test (I told her I had the EKG, Echo and 24 hour monitor in April, but I think she wants that repeated). These I want done anyway, even if often I feel to weak to do a stress test and the tilt table scares me because you can faint during it, which of course I have a major phobia of. She also wants me to see a neurologist and endocrinologist. I am not completely sure why, except I know to have my hormones tested by the endocrinologist. After all this she wants me to come back in two months to see her. Only thing is when I checked out they said she had nothing open for four months, but would have her personal secretary call me to schedule my appointment to see if she could get me in within two months.
She also has ordered blood work, which is a nightmare for me, blood, needles, fainting. I have a lab tech come to the apartment to draw it. That will be Feb 5th in the morning if everything was faxed correctly. To make it worse I have to fast for it because she wants to check my fasting blood sugar. Both her and my primary care doctor are concerned that my blood sugar at St. Peters Hospital back in March 2009 was 136. However I have explained to both of them I drank orange juice within 15 minutes of them running that test. From everything I have read after eating or drinking juice 136 is not out of the ordinary, but whatever. She is also going to do a liver panel, which was normal in March 2009, normal in Dec 2007 and normal in Feb 2006, so why I am doing this again, esp. since the bowel color change was there in 2007 and 2009 is beyond me. Also she is running a celiac disease test..thank God finally. I have been asking for that test for years. Other blood tests will be needed that she can not order, so I assume my primary care doctor. I honestly do not know how I will get through all this or if I even can without actually cracking. Sometimes I think people who talk to me online think I am stronger than I actually am.
I was giving a bowel sample test which I will have to do in a few days and return to the Albany Medical Centers lab. That test is to see if I still have H. Pylori or if the Prevpac I took back in July 2009 actually killed it.
I discovered a lump on my back a few days ago which I pointed out to her and she could feel it and said it was a fat tumor or a swollen lymph gland. If it was a fat tumor it would keep growing and I would have to get that removed.....great.
Something that left a bad taste was when she asked my sexual preference (it wasn't random is was in context), which was fine, but then after I told her she asked if I have tested for HIV. I guess it only bothers me because it was a quick jump...gay...HIV. I don't know.
I had mentioned that I didn't want to take Prevacid for rest of my life and she said "Why not?" I said "because all medications long term effect the body in a negative way, there is no long term studies on these drugs and the FDA never approved them for long term use." She said "Well if you have acid reflux its the easiest thing to do and they may have side effects, but you will have to make a trade." Ok I don't want to make a trade and who ever said I wanted to take the easy route of swallowing pills for the rest of my life. For those of you who don't know Prevacid and drugs in its class are called PPI's and they are now slowly being linked to heart attack (link vioxx was) and it is strongly suspected that long term use leads to baldness. Not to mention when you stop your stomach acid you can not take in the nutrients of food correctly, which is why anemia is linked to these drugs as well.
I will talk more about her later I am sure. Topic change:
My mother was very dizzy the other morning and was taken to the ER. The doctors did a CAT scan and found nothing, said she was dizzy from low potassium, however it was no lower that it normally is. Thankfully they admitted her and the next day did an MRI and discovered that she had a few mini strokes. I gather all in the same location of the brain and they happened over the past few weeks, with the last I gather causing the dizzy spells. However this explains her agitated behavior recently. Now I understand why she was maybe being so mean to me on the phone and not being as nice as she use to be towards me. That was taking a toll on me and I had been crying over that, because being this sick and for the most part very alone in all this....well it just made it harder. Thankfully it did not effect her memory or speak, she also has no weakness.
Her Iron is also way to low. She has been taking Iron since before she started chemo (she stopped chemo in Sept 2009) and continues too take Iron. However, it is not helping and so she is going to be having a blood transfusion to get Iron back in her system. This is a concern because getting blood in a weakened state like my mother is in is not easy on the body. They have to give benadryl with it and keep checking her for a fever.
Also they did an ultrasound of the arteries in her neck, which she will get the results to tomorrow. If they are clogged they will have to open them and clean them out. That of course has a risk of death and major stroke.
I was talking to her on the phone tonight and she seems ok over all. I think she is tired of everything, as I know by now I would be too. To be honest I don't think I could do that as gracefully as she has. I mean it must be very demeaning for her. She has been in diapers since July. She just had another colonscopy (same gastro doc I am now seeing is her doctor as well) they took biopsies, but I don't think the results from that are back yet. They removed the second polyp that they were not able to remove when they found the cancer the first time.
One last thing about the gastro doc I saw today. She thought POTs was tuberculosis of the bones. So anyone who reads my blog often by now knows what POTs is and that actually makes you know more than most doctors know about it.
Tuesday, January 26, 2010
Friday, January 22, 2010
Third Times The Charm Maybe
I went to see my therapist again today. I was going to give it three sessions with her before I decided if I was going to try to stick with her or find a new one. I actually thought that today was going to be my last session with her, but she surprised me and I actually felt like maybe she is understanding what I am saying. I guess she just seemed more open to me this time. I told her about the visit with the lung doctor and the test results. I told her about how he had told me I should have just stopped the xanax cold turkey because the withdrawal only lasts three days to which she looked horrified.
She gave me some reading material on "mindfulness", which I was a little bit familiar with anyway, but by no means well read on the subject. I have not read what she gave me yet, however, I was on youtube tonight watching videos about it.
She looked surprised the doctor I just saw didn't feel the need to do a stress test and asked how I was going to go about getting one now. I told her I guess I will just go back to my primary care and just ask for him to refer me for one. She has offered to give me a note, should I need one, telling my doctor that she thinks all organic causes should be ruled out before it is just labeled anxiety.
We talked about my heart rate and how it is rapid during standing and when I am in the shower because I have become very heat intolerant. She thinks I should start calling around to the doctors in NYC and Boston to see if I can get in to be checked for POTs. We talked about how I would get there. I told her I would just drive and take Keith with me. I also told her I am trying to get as many tests run here in Albany as possible before I finally go to NYC or even another state. Plus we talked about how my insurance may not cover this esp. if it was out of state.
I think what I liked the most about today is I feel I finally got across to her, that I have a fast heart rate when I am nervous, yes I agree, but I have it for other reasons as well now and I can actually tell the difference. I also explained to her how having the label of anxiety is not very helpful in this situation. I said to her "It is sort of like if you felt unwell and maybe a little feverish, so you took your temperature and had a fever. Then, a few days later you still had the fever, so you saw your doctor and told him about your fever and feeling unwell. Only your doctor says to you "Why are you taking your temperature? Maybe you just think you feel unwell, because you are scaring yourself by checking your temperature....is everything OK at home?...Why don't you try an antidepressant?" and then you say "But I have a fever." and the Doctor says "I think you are worried you have a fever and so, then you do and are causing a self-fulfilling prophecy." Mean while you actually have the flu." and I told her basically that is what is happening to me.
Anyway, so for now I am keeping her. I would rather not have to change again anyway. I mean statistically I eventually have to randomly hit some good people. I know all medical professionals can't be idiots (God, I hope not). I think I have just been very unlucky so far.
She gave me some reading material on "mindfulness", which I was a little bit familiar with anyway, but by no means well read on the subject. I have not read what she gave me yet, however, I was on youtube tonight watching videos about it.
She looked surprised the doctor I just saw didn't feel the need to do a stress test and asked how I was going to go about getting one now. I told her I guess I will just go back to my primary care and just ask for him to refer me for one. She has offered to give me a note, should I need one, telling my doctor that she thinks all organic causes should be ruled out before it is just labeled anxiety.
We talked about my heart rate and how it is rapid during standing and when I am in the shower because I have become very heat intolerant. She thinks I should start calling around to the doctors in NYC and Boston to see if I can get in to be checked for POTs. We talked about how I would get there. I told her I would just drive and take Keith with me. I also told her I am trying to get as many tests run here in Albany as possible before I finally go to NYC or even another state. Plus we talked about how my insurance may not cover this esp. if it was out of state.
I think what I liked the most about today is I feel I finally got across to her, that I have a fast heart rate when I am nervous, yes I agree, but I have it for other reasons as well now and I can actually tell the difference. I also explained to her how having the label of anxiety is not very helpful in this situation. I said to her "It is sort of like if you felt unwell and maybe a little feverish, so you took your temperature and had a fever. Then, a few days later you still had the fever, so you saw your doctor and told him about your fever and feeling unwell. Only your doctor says to you "Why are you taking your temperature? Maybe you just think you feel unwell, because you are scaring yourself by checking your temperature....is everything OK at home?...Why don't you try an antidepressant?" and then you say "But I have a fever." and the Doctor says "I think you are worried you have a fever and so, then you do and are causing a self-fulfilling prophecy." Mean while you actually have the flu." and I told her basically that is what is happening to me.
Anyway, so for now I am keeping her. I would rather not have to change again anyway. I mean statistically I eventually have to randomly hit some good people. I know all medical professionals can't be idiots (God, I hope not). I think I have just been very unlucky so far.
Thursday, January 21, 2010
Pulmonologist visit
I went to the pulmonologist yesterday and had my Spirometery test to test my breathing. There are many different values it measures and to be honest I am not well read in this area, so I can only go by what he told me. The FVC and FEV1 values I gather are the main values. Normal range for these values are 80-120. 80 being the lower end of normal. My FVC value was 72 and my FEV1 value was 70. The pulmonologist said it was most likely because I had a bullectomy in Aug. 2000 and because I have a straighter spine than normal and because the distance from my chest to my back is small, so my lungs are compressed. He did not think it was caused by any damage from smoking and if so very little. Thankfully I quit smoking in Sept. 2009.
I gave him a list of all my other issues I am having which of course was down played to "me being very in-tuned with my body", "anxiety being the cause of my heart rate being high", saying I should take a beta blocker. I explained that I was not like this till after I came off xanax. He explained to me how benzo withdrawal only last 3 days (Which is just plain stupid, even ER doctors who mistreated me in the past admitted it was 4 weeks). He didn't think I should have tapered off the benzo and should have just stopped cold turkey. I told him if I had done that I think I would have had a seizure and he said "I see". As if I am making this up. No one ever should cold turkey stop a benzo.
I asked him if he had ever heard of POTs and he asked me what it stood for and I said "postural orthostatic tachycardia syndrome" and he said "oh yea, but you are not passing out, so you don't have that.". I said "Yea, but only 30% of people with POTs pass out, the other 70% have no change in the blood pressure or it spikes more than normal." and he said "Yea, but since you are not passing out you don't have that." (OK did he just hear what I said?) he continues "besides there is nothing we can do for that anyway." Which is not true. I figure if I have to tell him what POTs stands for he know very little about it. If he thinks benzo withdrawal lasts only 3 days then he is grossly misinformed and ignorant to this, which I can not understand since he claims he work with these drugs. His poor patients.
He told me he has been taking a beta blocker for years because his blood pressure is normal, but at work when he works in the ICU and people don't do something he asked them to do for his patients his blood pressure would be 180/120 and his pulse would race....now on the beta blocker which he takes daily and has no side effects from he is steady. My first though was that is not "high blood pressure" as much as it is a rage problem. He told me that when he forgets to take his beta blocker that within 24 hours his heart is racing faster than normal and he starts snapping at people because of the rebound effect, that how today he forgot to take his beta blocker and in 3 hours he knows he will be on edge and snapping at people. I told him "Have someone bring you your pill." Why would I want to be on a drug that does that? I do not want my body to require crap like that.
We went on talking about how I had to stop smoking because a cigarette was increasing my heart rate by 50 beats..he explained to me that cigarettes increase heart rates and I said yeah by 5 to 15 beats for 20 minutes on average not 50 beats for 2 hours. He said "50, wow...you have a very sensitive nervous system." Hello? What part of this was not happening until March 4th 2009 are you or any doctor not getting?? Do you think I would have sat there smoking for 11 years with my heart rate increasing to that speed and vomiting from it as it caused chest pain? So, instead of beating the shit out of him and throwing myself out a window I sat there and teared up several times as I listed to him. He also said "I think maybe you have a sensitive sinus node in your heart." Again I didn't till March 4th 2009, I do not understand why no doctor will even consider that a medication messed me up.
When he told me I was "too in tuned to my body" is the only time I defended myself immediately..I said "No. If I had a fork and kept poking you over and over, day in and day out on your hand with the fork, you would feel it. You would not be too tuned into the fork." I hate that whole "you are tuned in crap" it blames the person for feeling something and it is a cop-out.
Since he has a poor lack of knowledge on over half of what we talked about, why should I trust him on why my lung function is lower than normal? Eventually, I might take my results and get a second opinion just to make sure.
Oh I also told him about how when I stand my heart rate keeps climbing. So he clipped this thing on my finger and I laid down, then stood up. He had me stand for about a minute and said "Yea, its up to 110 now." (It would had went higher if he let me stand there longer.). He said "Let me guess..you aren't an athlete?" I said "No, but I do do the treadmill often since I quit smoking." and he said "Oh you do?". I told him how I can only go 2mph and with that my heart goes to 140 and if I go faster it goes to 170+ at 3 to 4 mph..and when that happens my face is pale after. I also told him how my heart will race for an hour after that before it will almost be back to where it was before I exercised. Also, that I am wore out for the rest of the day after I exercise. I got that look like "Why do you know your pulse?" The whole athlete question, which I have got more than once is annoying and I will tell you why. Do you have any idea how many overweight people are in that office? How many people who I know damn well are not very athletic and many probably have desk jobs...where is there high standing heart rate?
Anyway, that is all I can think of for now expect to say that my test was suppose to be at 8am, I checked in at 7:45am, at 8:20am they said they were looking for me and didn't know I was there. The receptionist didn't put my chart where it should be. Then I was suppose to see the pulmonologist at 8:40am. I was taken in, then he told me there was a scheduling error and he was sorry and he had to give a lecture. He asked if I could return at 9:50am when he returned. I said "yeah that is ok." and I sat in my car till it was time to go back in.
I gave him a list of all my other issues I am having which of course was down played to "me being very in-tuned with my body", "anxiety being the cause of my heart rate being high", saying I should take a beta blocker. I explained that I was not like this till after I came off xanax. He explained to me how benzo withdrawal only last 3 days (Which is just plain stupid, even ER doctors who mistreated me in the past admitted it was 4 weeks). He didn't think I should have tapered off the benzo and should have just stopped cold turkey. I told him if I had done that I think I would have had a seizure and he said "I see". As if I am making this up. No one ever should cold turkey stop a benzo.
I asked him if he had ever heard of POTs and he asked me what it stood for and I said "postural orthostatic tachycardia syndrome" and he said "oh yea, but you are not passing out, so you don't have that.". I said "Yea, but only 30% of people with POTs pass out, the other 70% have no change in the blood pressure or it spikes more than normal." and he said "Yea, but since you are not passing out you don't have that." (OK did he just hear what I said?) he continues "besides there is nothing we can do for that anyway." Which is not true. I figure if I have to tell him what POTs stands for he know very little about it. If he thinks benzo withdrawal lasts only 3 days then he is grossly misinformed and ignorant to this, which I can not understand since he claims he work with these drugs. His poor patients.
He told me he has been taking a beta blocker for years because his blood pressure is normal, but at work when he works in the ICU and people don't do something he asked them to do for his patients his blood pressure would be 180/120 and his pulse would race....now on the beta blocker which he takes daily and has no side effects from he is steady. My first though was that is not "high blood pressure" as much as it is a rage problem. He told me that when he forgets to take his beta blocker that within 24 hours his heart is racing faster than normal and he starts snapping at people because of the rebound effect, that how today he forgot to take his beta blocker and in 3 hours he knows he will be on edge and snapping at people. I told him "Have someone bring you your pill." Why would I want to be on a drug that does that? I do not want my body to require crap like that.
We went on talking about how I had to stop smoking because a cigarette was increasing my heart rate by 50 beats..he explained to me that cigarettes increase heart rates and I said yeah by 5 to 15 beats for 20 minutes on average not 50 beats for 2 hours. He said "50, wow...you have a very sensitive nervous system." Hello? What part of this was not happening until March 4th 2009 are you or any doctor not getting?? Do you think I would have sat there smoking for 11 years with my heart rate increasing to that speed and vomiting from it as it caused chest pain? So, instead of beating the shit out of him and throwing myself out a window I sat there and teared up several times as I listed to him. He also said "I think maybe you have a sensitive sinus node in your heart." Again I didn't till March 4th 2009, I do not understand why no doctor will even consider that a medication messed me up.
When he told me I was "too in tuned to my body" is the only time I defended myself immediately..I said "No. If I had a fork and kept poking you over and over, day in and day out on your hand with the fork, you would feel it. You would not be too tuned into the fork." I hate that whole "you are tuned in crap" it blames the person for feeling something and it is a cop-out.
Since he has a poor lack of knowledge on over half of what we talked about, why should I trust him on why my lung function is lower than normal? Eventually, I might take my results and get a second opinion just to make sure.
Oh I also told him about how when I stand my heart rate keeps climbing. So he clipped this thing on my finger and I laid down, then stood up. He had me stand for about a minute and said "Yea, its up to 110 now." (It would had went higher if he let me stand there longer.). He said "Let me guess..you aren't an athlete?" I said "No, but I do do the treadmill often since I quit smoking." and he said "Oh you do?". I told him how I can only go 2mph and with that my heart goes to 140 and if I go faster it goes to 170+ at 3 to 4 mph..and when that happens my face is pale after. I also told him how my heart will race for an hour after that before it will almost be back to where it was before I exercised. Also, that I am wore out for the rest of the day after I exercise. I got that look like "Why do you know your pulse?" The whole athlete question, which I have got more than once is annoying and I will tell you why. Do you have any idea how many overweight people are in that office? How many people who I know damn well are not very athletic and many probably have desk jobs...where is there high standing heart rate?
Anyway, that is all I can think of for now expect to say that my test was suppose to be at 8am, I checked in at 7:45am, at 8:20am they said they were looking for me and didn't know I was there. The receptionist didn't put my chart where it should be. Then I was suppose to see the pulmonologist at 8:40am. I was taken in, then he told me there was a scheduling error and he was sorry and he had to give a lecture. He asked if I could return at 9:50am when he returned. I said "yeah that is ok." and I sat in my car till it was time to go back in.
Fathers Reply
I am going to address the email I got back from my father and I will break it down line by line. I hate even doing this because as I pointed out in a comment to someone else on here, that unless you have lived my life and understand the inner workings of my family I just sound like a spoiled brat. However this blog is also for myself, so I just like to keep track of things. I did not reply to the email and I have no intention of replying to it. I also have no intention of keeping my parents involved in my health matters anymore, there is no point, it does me no good at all. I do have a feeling that they and by "they" I mean my father reads my blog. I am not sure, personally I don't care if it has been discovered by my parents. This is me and it doesn't get anymore real than this.
"Mom had spent almost a whole day Monday at the hospital - between the CT Scan and the Doc appointment - Mom was tired when we got home from the test etc - and wanted me to email you with the news - before we forgot."
OK, what stopped my father from picking the phone up and dialing seven digits to tell me himself (Even if mom was tired.)? That is a lot easier and faster than booting up his computer and signing into his email account. However, I know that my mother, with that news did make phone calls and would have told my sister or her friend Janet. I know damn well my sister did not get an email.
"We both believe that the pills is what caused a majority of what happened to you - and we saw it first hand when you were living with us the few months. That's why we thought we were doing a good thing by going to see Dr. P**** cause we heard that we was compassionate - but he turned out to be a big flop."
If my parents really believed that the pills were indeed doing what they did to me why didn't either of them have my back? Where was my father saying to a doctor "I know my son and this is not how he was." Why was I told by my father "I don't know what the fuck is wrong with you." and "You don't eat because you don't want to eat." Where was the compassion during any of that from him? I don't fully believe I was taken only because they heard he was "compassionate", it is called he had a sliding fee scale. When it comes to my health and money I can pretty much guarantee I will be taken to someone who treats the lowest common denominator. Also after two visits and my parents knew what a "flop" he was with his praying therapist, where was the help getting me another doctor, as I laid in bed too sick to doctor shop for myself. I would like to point out to people at this time I was vomiting, dizzy, very rapid heart, living only on liquids....just plain bed bound often..it was like having the worst flu ever that never ended.
"Email or call these doctors & ask them if they take your insurance - and if they are in NJ or out of NYS your Medicaid will not cover them."
This I already know and a lot of these doctors are in MA and NJ.
"Ask them if they have any kind of program that can help you since you have been suffering so long."
This might come as a surprise, but doctors do not care how long I have been suffering. It is a business, a job, that is why the cardiologist was still $540 dollars and there was no sliding fee. A specialist in NYC, NJ or MA is not going to just hand out freebies because I am sick.
"We don't know what we are coming up against with your mom being so sick."
While this is true, mom does have insurance and one medical test is hardly going to bankrupt the family. The truth is my suffering simply is not worth the help. It is also meant to make me feel guilt and I will not.
"Hopefully these docs have program or something they can come up with for you."
They don't, this is what families are for and by no means is our family poor like so many families out there.
"Mom & I love you very much - please don't think we don't."
I never thought they didn't love me..in their own way. I do think they are both seriously warped. After all when they though health insurance through Keith was going to be $180 a month that could be paid for. They are willing to pay for a therapist when my medicaid goes. So why is it so hard to pay for a test that could be $1500 dollars? They are the ones who blew this test up to $10,000-$25,000 dollars in their minds.
"Dad"
Final comments. Is my mom still tired from the CT scan, because it has been 48 hours and still my phone has not rang. In fact my phone has not rang since the 8th of January. I am the one who called on Jan. 13th. My father could have also called me to tell me what was said in that most recent email. I also know that email was wrote not by my father, but by my mother and father together because "Mom & I love you very much - please don't think we don't." is something my father would never write. I am also starting to suspect (though I could be completely wrong) that my parents actually have seen a therapist once or twice and told to do "tough love" bullshit. I only suspect that because that crap was pulled on me in high school.
"Mom had spent almost a whole day Monday at the hospital - between the CT Scan and the Doc appointment - Mom was tired when we got home from the test etc - and wanted me to email you with the news - before we forgot."
OK, what stopped my father from picking the phone up and dialing seven digits to tell me himself (Even if mom was tired.)? That is a lot easier and faster than booting up his computer and signing into his email account. However, I know that my mother, with that news did make phone calls and would have told my sister or her friend Janet. I know damn well my sister did not get an email.
"We both believe that the pills is what caused a majority of what happened to you - and we saw it first hand when you were living with us the few months. That's why we thought we were doing a good thing by going to see Dr. P**** cause we heard that we was compassionate - but he turned out to be a big flop."
If my parents really believed that the pills were indeed doing what they did to me why didn't either of them have my back? Where was my father saying to a doctor "I know my son and this is not how he was." Why was I told by my father "I don't know what the fuck is wrong with you." and "You don't eat because you don't want to eat." Where was the compassion during any of that from him? I don't fully believe I was taken only because they heard he was "compassionate", it is called he had a sliding fee scale. When it comes to my health and money I can pretty much guarantee I will be taken to someone who treats the lowest common denominator. Also after two visits and my parents knew what a "flop" he was with his praying therapist, where was the help getting me another doctor, as I laid in bed too sick to doctor shop for myself. I would like to point out to people at this time I was vomiting, dizzy, very rapid heart, living only on liquids....just plain bed bound often..it was like having the worst flu ever that never ended.
"Email or call these doctors & ask them if they take your insurance - and if they are in NJ or out of NYS your Medicaid will not cover them."
This I already know and a lot of these doctors are in MA and NJ.
"Ask them if they have any kind of program that can help you since you have been suffering so long."
This might come as a surprise, but doctors do not care how long I have been suffering. It is a business, a job, that is why the cardiologist was still $540 dollars and there was no sliding fee. A specialist in NYC, NJ or MA is not going to just hand out freebies because I am sick.
"We don't know what we are coming up against with your mom being so sick."
While this is true, mom does have insurance and one medical test is hardly going to bankrupt the family. The truth is my suffering simply is not worth the help. It is also meant to make me feel guilt and I will not.
"Hopefully these docs have program or something they can come up with for you."
They don't, this is what families are for and by no means is our family poor like so many families out there.
"Mom & I love you very much - please don't think we don't."
I never thought they didn't love me..in their own way. I do think they are both seriously warped. After all when they though health insurance through Keith was going to be $180 a month that could be paid for. They are willing to pay for a therapist when my medicaid goes. So why is it so hard to pay for a test that could be $1500 dollars? They are the ones who blew this test up to $10,000-$25,000 dollars in their minds.
"Dad"
Final comments. Is my mom still tired from the CT scan, because it has been 48 hours and still my phone has not rang. In fact my phone has not rang since the 8th of January. I am the one who called on Jan. 13th. My father could have also called me to tell me what was said in that most recent email. I also know that email was wrote not by my father, but by my mother and father together because "Mom & I love you very much - please don't think we don't." is something my father would never write. I am also starting to suspect (though I could be completely wrong) that my parents actually have seen a therapist once or twice and told to do "tough love" bullshit. I only suspect that because that crap was pulled on me in high school.
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:
"Hi
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
Dad"
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.
Brian"
"Hi
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
Dad"
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.
Brian"
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