flipperclot's Journal

I don't know if I have done too much this weekend in rearranging my 3 kids rooms, or if something else has happened.  Felt like my heartrate was racing again this morning, pain, SOB, hard time singing at church, chest hurts now -could it be another PE?  Been coughing a lot this weekend -lots of dust flyying.  Doc probably won't listen.  My INR has been low for the last couple of weeks.  More energy -must be the "placebo effect" from the IV vitamin and lidocaine treatment -and that nagging brain irritation doesn't seem as bad- But then again I am a "healthy young women" - so why is it that you prescribe all this medicine for me again?  I am feeling really sarcastic today -Sorry.  I talked to my insurance company on Friday and asked for a case manager.  They are supposed to call me tomorrow.  I am hoping they can help me find a new doctor.  I sort of feel like I am "cheating" on my current PCP, since I am having to call tomorrow for him to try , once again, to figure out my coumadin dose.  It feels like a dog chasing their tail -but can't ever catch it.   I guess I amm sort of afraid now that I have made the decision to move on.  Well, I can only hope that this week is better than last. Gotta get ready for my baby's 5th B-day party.     Blessings,     Teri

P.S.  I wish I caould be like a priest that used to be pastor of our church -I never met him, but have heard a lot about him.  One of his favorite mottos was, "All blessings, No complaints."

Hopefully the hell week is over.  Got in a giant argument with my PCP , Dr. Kile yesterday.  I think I need to find a new doctor.  People have been telling me that since he misdiagnosed my PE last year -after he let me walk around on a broken leg for 3 weeks -and then recommended not doing anything about that since I had already been walking on it for 3 weeks.  I'm not sure when he stopped listening, but he used to be really good a few years ago when my depression issues started.  Does he honestly think I would have called him about hurting my leg if it wasn't really bad?  I don't go there just to chit-chat.  When I went to him telling him I was having trouble breathing last year, He gave me an aerosol, and blamed it on my thyroid or my depression, even though I started to cry and told him it wasn't like asthma, and that I was really worried about it.  He decided to change my antidepressant medicine not too long before my PE -said what I was taking was causing the fatigue that I had been experiencing for almost a year -after results of a sleep study showed I wasn't getting restful sleep. I went through hell then with wihdrawal symptoms -I swear it must be like the agony in the garden or the forty days in the desert. I'm still not sure why he did that to me -felt like punishment.  My PE was diagnosed when it was actully resolving, and after I had my husband take me to the hospital -I could no longer stand up without almost passing out.  The Er told me that all my tests were normal, the CT scan wasn't any good -that was my fault -it felt like the IV infiltrated, so they stopped the bolus of dye and it messed up the test.  They kept me until the next morning to repeat the test.  I was sent home that afternoon on coumadin after I got a phone call from Dr. Kile telling me I had a  small resolving PE.  He had told me that morning that all the bloodwork from the night before WASN't normal.  A test called the D-dimer was high, and it could indicate a PE, but he didn't think so.  It seemed like he sort of played it down then -like it wasn't a big deal -even though I told him my Dad just had a PE 2 months before that, and my Grandfather DIED from a massive PE after he broke his leg. At other times, He acted like it was a big deal.  To me it WAS a big deal.  I have tried very hard not to bother him unless I don't know what to do. Seems like he really doesn't care anymore -claims he and his staff are doing the best they can.  He actually said he wouldn't be offended if I went somewhere else -felt kind of like he was firing me.  Been upset about it ever since.  Yesterday, already had an appointment scheduled to catch up on all my recent Dr. appointments, and I hadn't been feeling that great since last week, had talked to him on Saturday -was going to go see him on Saturday, but got called into work.  So still not feeling well,  Had been having a lot of tacchycardia-especially in the afternoon.  On wed, my HR was in the 120-130s just sitting still -doesn't make you feel very good.  Just had meds rearranged for my thyroid on Mon. by the endocrinologist, he thought that was the cause.  The heart rate thing was going on for a couple of hours before I called to ask if I should worry about it, and what I could do about it.  Earlier in the day, the NA called to tell me my coumadin dose after I called my level in.  The dose she told me didn't make sense -it was too low, so I asked her to just have the Dr. call me so I could understand his thinking.  She called back a little later and said she apologized, but the dose was supposed to be 3x what she had told me -now that made more sense.  This is at least the 4th mistake she has made with me in the last year -seems like a lot to me.  She gets sort of pissy when I question her -after so many mistakes, wouldn't you?  Anyway, she calls me back about the HR and tells me to take 1/2 tablet of the beta blocker , attenalol that I'm taking.  I haven't been on atenalol since April.  I told her I wasn't on it.  Why didn't the Dr. know that?  I have given him an updated list of my meds several times.  Anyway she kept repeating herself and saying to take this medicine that I don't have and am not on.  I said well how long is OK for my heartrate to be like this?  She said to take the medicine and they would see me tomorrow -she couldn't answer my question, and wasn't willing to ask anyone else.  I said so if I die before tomorrow, then I'm just dead -silence -so I hung up.  Totally upset -what the hell.  I thought maybe someone would call me back - nothing. 

Went to my appointment yesterday.  She did my vitals and put me in a room -I asked her if she told Dr. Kile what I said -she said yes I did.  When he came in I probably looked like a volcano ready to errupt, except when I get mad, I usually start crying -anger is not one of my strong points.  Got pretty crappy with him through my tears though -said a lot of cuss words for good measure.  He came in and said whats going on -I'm sure he was warned before he came in the room.  I asked him why no one called me back yesterday.  He said he didn't know he was supposed to call me back.  Hmmmmm, prescribe a medicine for the pt. that she doesn't take and doesn't have -am I supposed to congure that up with magic or something - he claims he didn't know I didn't have it.  Besides the fact, that if a pt was that upset, unless you were trying to get rid of them, why wouldn't you call them back just for that reason.  Why did that nursing assistant get to make the decision as to what information she gave him -she doesn't know any better -she could potentially cost someone their life.  I asked him that -he said he was going to stand behind his staff, that they were doing the best they could.  It used to be a lot better -what happened to that guy?  I asked him how long it was OK for my heart to be racing like that -he says it would be Ok for it to do it all night and it wouldn't be a problem.  I asked him how I would know that.  He asked me if I had several other symptoms -told me it wasn't my heart -that there is nothing wrong with my heart.  Hello, if there is nothing wrong with my heart, then why am I on heart medicine -I get the eyeroll.  I said Ok, I am on heart medicine to stop my heart from beating too fast , and now our telling me it doesn't matter, so can you see why I am confused.  My other choice rather than the heart medicine was surgery -but there isn't anything WRONG with my heart.  Maybe I'm not supposed to listen to that guy either.  He somewhere in there said I was a young, healthy women.  If I'm so fricken healthy, then why do I feel like shit most days, and its been that way for a year.  He says something to the effect that I am anxiuos -I said no this is not anxiety -this is pissed off.  Asked him about the endocrinologist's recommendation to see a gastroenterologist -he says I don't need to see one -here we go again -who am I supposed to listen to and which one should I piss off by not doing what they recommend.  I told him that I still didn't feel well -he can't find anything that could be making me feel that way.  I told it feels like my brain is being irritated -he said he didn't know what I meant by that- I told him that it felt like something was bothering me, but I didn't know what -still feels that way -like this nagging irritable feeling.  Told him that the Neurologist said I have Essential tremor.  He says thats good that it isn't something pathological-how do you figure thats good -would you want to have it?  I don't want to have it. Asked him about the high mercury and lead that I got back on a urine provacation test -the eyeroll again.  I said -so you don't believe in that either.  He says no, that he doesn't like that or the IV vitamin and lidocaine treatments that I have been getting -maybe it is placebo effect.  He goes on to tell me that he doesn't know that much about it.  So I guess if you don't know about it, it doesn't exist and couldn't possibly be of any help.  I feel like I have to give him proof for everything I do -I shouldn't have to do that.  If I don't know about something that is going on with one of my patients, then I find out more about it.  Evidently, not everyone feels that way.  Probably 2 months ago, I asked him if he wanted to read the book I had just finished "from fatigued to fantastic'" by Jacob teitalbaum -the doctor who started the fibromyalgia and fatigue centers that I go to.  He said yes, and I seriously thought he was going to take the time to educate himself about the treatment that I was going to use to try and treat the chronic fatigue and fibromyalgia that I have been diagnosed with.  I was wrong.  I asked for the book back.   I know that he has other patients besides me, maybe too many now, he has some things going on in his family -but so does everyone else.  I have really had to defend my decision to stick with him to my parents and my husband several times.  I guess I kind of feel betrayed.

I guess, in general, I am suspicious of pretty much any dr., not sure who to believe -I have had 2 neuologist in the past 2 months read the same MRI -one as being normal aging, the other as having had several mini-strokes in the frontal lobe -who should I believe?  That could provide a good explanation for the inability to spit out the word I am looking for in the past couple of years, trouble writing and typing without making mistakes.  Who do I believe -The Older. more experienced guy, or the Newer, younger guy.  Not too long ago, when I was at Dr. Kiles office, I asked him that question, and he said believe me -I told him he already had 2 strikes against him -probably ticked him off, but you know what -I'm tired of being the pissee -I am going to be the pisser offer for a while.  Well, getting late -last soccer game tomorrow and having new carpet delivered and installed in the am -so off the bed.

Endocrinologist- changed my meds to synthetics-wrong mix of t3/t4 in the natural -so he says may do better on the synthetic- I am giving anything a chance at this point -he gave me that your stupid look, and I told him not to look at me like that -then he was a little nicer.  My ferritin and Vit D really haven't improved despite taking extra iron and Vit D, so he want s me to see a Gastroenterologist to see why I am not absorbing things -might have Celiac disease -did some blood test for it, increased both my Fe and Vit d to double what it was.  I can already tell you that I feel better when I get the IV vitamin treatments -sort of bypasses the digestive system.  He said let him tweek my meds and mumbled all these dates and when I needed labs again.  Then when I went to check out, I will see his NP in 8 weeks , and him in 4 months -what the hell.  If you are going to talk the talk, then walk the walk.  The way I see it you have already wasted 6 months of my time.

Counselor -made me feel better, pointed out that I am better than I was 6 months ago, not to lose hope.

Neurologist -then I went to the neurologist, and he diagnosed me with essential tremor -one more thing to add to the list.  It won't go away, it will get worse with time and age, and there is no cure.  Meds may help, but already on so much -didn't want to prescribe more- at this point, I don't want any more anyway.  Just now sitting alone for the first time today, however is making me sad thinking about it -it could potentially cause me to lose my job eventually, let alone my independence.  i don't want my kids to be known as the ones with the shaky mom. 

Work -busy, Mary Anne is a Godsend.  Tired -busy day today, going to bed -work tomorrow.  Send me a little extra hope if you have any left over.