D. Carbcounter

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Jack and shit.

My eye and brain doctor say they think it is some unknown auto immune disease even though my ANA came back negative.

My brain MRI does not show lesions.  My PCP has tossed in her cards and has decided to blame all of my symptoms on gastric bypass and depression.

Part of me just wants to give in.  Another says I should push for the referral to the rheumatologist.

I don't know.

I would like to have another cbc to see where my white count is but I'm afraid to even go to the doctor for a cold.  It feels like such a waste of time.

I've had a few "flare" ups but have not been as bad as I was in sept and october in several weeks, so that is good, but I think my low white count is contributing to this back and forth sore throat and flu-like issue.

In other news I'm down to about 138 lbs and am in a size 4 or 5/7 depending on the cut of the jeans.  I don't want to lose anymore weight and I am eating regularly.  I think the weight loss is part of whatever ailment I am going through.  I'm not going to worry, I am just going to take school a little slower and work to shake off the frustration and depression that threatens me.  That is all I can do.

Oh I can enjoy being skinny.  Yeah, I enjoy that :)

So I guess my cry for help finally fell on some open ears because my blood doctor called my PCP and between them they believe it is likely I may have MS.  Next week I am having a head, chest, abdominal and pelvic CT done and also a complete eye exam to check the nerves in my eyes and whatnot.  I guess after that comes the neurologist and then whatever and so on and so forth.  I am glad I have an appt with my shrink on Tuesday cos I sure need it!

So next week I start the neurological testing for MS and sojourns.  I don't have the energy to go into the full details just now. 

I feel overwhelmed and I really want to just cry but at the same time I just don't understand this need to be so emotional.

    Right ok, so Weds I saw the hematologist.  I got to the office over an hour early hoping they would see me a little early so I could get to English on time but no, I was seen late, as per normal doctorial protocol, and then the receptionist took her sweet ass time writing up my test slip and setting my next appointment.  Anyways, so I see this guy and give him my symptoms, he looks at my lab slip (notice I said slip, not slips) and he tells me, as kindly as possible, that I have no reason to be feeling the way I do.  I'm baffled, I really am, he says that I can basically go away and see if I don't get better on my own or I can be stubborn and do testing.  We agree on a compromise and so I'm getting a CBC and full metabolic panel on Tuesday and then seeing him again a week after that. 

    The craziest thing is on Tuesday I suddenly felt 100 times better then I have in 2 months.  It lasted for most of the week and then on Friday after having, admittedly, too much caffeine, I had a sudden onset of these symptoms again at work.  I still am having other weird symptoms like the skin being red and itching and dry eyes and mouth and shaking and dizzy but the overwhelming fatigue and shortness of breath seems to be much better.  I cut back on my caffeine and I quit taking the Trazadone both so either one of those could be influencing it, I have no idea.  I just know that I wish to (insert your favorite religious figure here) that if I am to be this damn sick in the future that it would show up on some sort of fucking test.  Can't a girl get a break?  A swollen gland, perhaps some abdominal inflammation, a little elevated enzymes or some shit?  The doctor flat out told me that my blood levels were not off enough to cause the fatigue and shortness of breath.  What am I going to do.

    I am going to make an appt with a girly bits doctor and see about getting a physical and having a complete hormone test.  I'm grasping at straws but I seriously cannot afford to be as sick as I was.  My Spanish grade slipped, my English grade is probably suffering and I cannot afford to miss any more work.

The craziest thing happened. Sometime in the middle of the night super walmart took a huge DUMP on my neighbors lawn. It's scary. And I don't mean scary b/c of all the inflatable Halloween decorations adorning this single wide mobile estate, I mean scary because it literally looks like walmart took a SUPER CRAP on this person's house.



There is more on the other side of the "house" but I thought it may look a bit strange if someone saw me slow rolling past their home snapping pictures of their over-priced tacky lawn ornaments. 

What's next? An inflatable nativity scene for Christmas?  I already called it on the Halloween garland and lights.  I predict pastel colored egg-shaped lights twirling around trees and thrown over bushes this spring.  You just watch. 

PS I LOVE festive decorations and I freakin' love holidays but I can't bring myself to admire a tacky lawn decorated like a store display from the crappiest place on earth.

Well I finally got an appt with the hematologist.  I'm already scared of that office and I haven't even gone there yet!  When I called on Thursday they took my info and told me they had to get my paperwork and stuff and would call me back, they didn't.  I called on Friday and was told the lady who makes the appts was out that day so I could call back Monday morning if I wanted.  Monday morning rolled around and I was told they had never heard of me.  Haha I gotta laugh to keep from crying

Ok so they told me I'd have to start over, gave her all the info and she told me the same thing she told me on Thursday.  Having as much faith as I do in the medical system lately, I made sure to call them back on Tuesday and I was told by a snotty nurse that I had appointment for the 17th and they would see me on the 17th.  I told her that I was told I was suppose to be contacted by their office after they got my records to find out what medical tests I needed to have done prior to my appt.  She sighs, yes sighs, and says "do you have a referral?" I sighed right back at her and said "well yes, that's why I called your office in the first place."  To which she replies, "well you have an appt so we will see you on weds the 17th."  I hung up.

I tell you what, if I miss class to see that doctor on Weds and I'm told that he needs me to have blood work and that he can't help me until then I am going to snap.  I better bring a friend to carry me out of there because I doubt being arrested would help my situation.

on the up side, I did get an upper GI with bowel series yesterday and both the tech and the doctor were SO kind to me.  I had almost forgotten what that was like.  It is sad when a person gets so use to being miss treated by medical personnel that when someone remembers the small things it touches them.  I gave the doctor a brief recount of my issues and he gave me a kind smile and then told the tech "no fizz, please" which I had totally forgotten about.  I looked at him with tears in my eyes and said "thank you."  Ahaha I know, it is probably not significant to anyone else, but it meant a lot to me.

He was very patient, even told me I looked a lot like Hilary Swank (LOL THANKS!) and jiggled my intestines around and let me watch!  He showed me my anatomy and explained it to me and checked everything for everything and told me right away that he did not see anything of concern.  I thanked him for his time and felt an almost euphoric sense of relief knowing I did not have an ulcer or other blockage.

I still don't feel better, thought, and now I have a lovely virus on my lip.  I have not had one this severe since i was a kid and I also have some ulcerations along the inside of my bottom lip.  Lovely huh? They hurt like hell and of course they are self esteem killer.  Nothing says dirty nasty bitch like a large herpes blister on the lip.  To be honest I am not quite certain it is the same thing I've had before because they are not clear blisters.  I know, TMI right?  Anyways I also have developed a very painful lump in my neck just above the esophagus.  Not a place I've ever had a swollen gland before but I am not a doctor so who knows.  The pain in my abdomen has gotten a lot worse but I think a lot of that is a reaction to the barium. 

Anyways that is where I am right now.  I'm having a rather painful short of breath and weakness day.  I really don't know what I am going to do about work next week but I suppose I better figure that out.

"Pancytopenia"

On Thursday I received a call from Dr. H's nurse (she is so sweet) and she asked me to come in ASAP and pick up a referral for the Hematologist / Urologist.  My CBC came back in a bit crazy and so now I am playing the waiting game to get an appt with the specialist.  I called them on Thursday and spoke with someone who said she would need to get some of my records faxed over and she would call me back.  Friday afternoon I called back because I had not heard from her and I was told that "she is out for the day, you can call back on Monday." That was frustrating but what can I do?

My dumping has gotten a lot worse, if that is even possible.  I am worried about it because I know that if I dump I am not getting benefit from what I am eating and I have enough problems already.  Also my belly is out of whack as well.  On the right just under my ribs it feels as if I have a bruise, it's tender and doesn't like to be touched.  And I'm also getting weird sharp pains in my left side.  Who knows.  The pain in my should has also started to radiate down my arm towards my elbow but not quite that far.

I am terrified that something is going to happen and I will end up in the ER again.  I am terrified that I am dying, however dramatic that may seem.  I look at my daughter and I feel so scared and guilty that it's all I can do not to burst into tears.  My friends are all worried, my daughter is acting like she is stressed out and I wonder if that is my fault, and even my cat is treating me with kid gloves lol.

I just want to be better.  I have worked so hard on myself and school and work and family.  I feel like I am going to lose it and to be honest... I am terrified.

This morning my PCP's nurse called me and asked me to come in.  After speaking with her I feel a bit more confident.  She told me that we were going to stay on top of this thing and she has ordered a CBC for monday and another for thursday.  She also wants to do an EGD after that and a gallbladder ultrasound.  If my levels have not improved by the second CBC she is going to admit me for another transfusion and EGD.

I hope this thing is figured out soonish.

Fat Dancing Lessons

 

Obesity sucks.  It can sneak up on you.  There are phases.  For me it began when I was a young man who worked and played hard.  I ate whatever struck my fancy, but my caloric intake never exceeded the rate at which I burned those calories.  As time wore on and my activity level slowly decreased, the equation began to shift until my intake caught up to, then surpassed my expenditure and, almost unnoticed, my body began to lay down layers of stored energy in the form of fat.

Over a period of two decades my body went through a series of adjectives; from healthy to chubby, from chubby to plump, from plump to heavy, from heavy to just plain fat, and from fat to morbidly obese.

Obesity has many drawbacks.  I have broken a sweat just looking for the remote.  I’ve begun to consider slip on shoes.  If I jump up and down too energetically in my house the walls move back and forth visibly.  When I fly I have to ask the attendant for seat belt extenders.  Bleh.

The simplest activities become complicated when you’re fat.  Turning over in bed has become a process event.  Lift, shift, roll.  Lift, shift, roll.  Wriggle a bit to free the fat that I’ve pinched under my arm.  Then, waking, I repeat the process.  Lift-shift-roll.  Lift-shift-roll.  Until, arms fumbling for purchase as I will myself into an upright position, I get my legs over the side of the bed.

There are times when, flopping around, trying to maneuver around in bed, I find myself thinking about dancing lessons.

I’ve never had dancing lessons, but my mother did.  I remember waiting with my little sister and watching as the grownups stepped on each other and mumbled red-faced apologies in 3/4 time.  At the ages of 6 and 8 we were vaguely disturbed by the spectacle of these grown people, who were in charge of everything, appearing so terribly incompetent.

And then I remember the diagrams all over the floor of the dance studio.  Numbered feet and dotted lines indicating the steps of the dance.  One-two-three.  One-two-three.  Lift-shift-roll.  Lift-shift-roll.

Fat dancing lessons.

-S.Daniels (my awesome dad)

Well on Tuesday night when I went to see my surgeon they admitted me into the hospital for a blood transfusion and iron infusion. 

Let me just say that all 3 times I have been in St Bernadines I have just been blown away with how wonderful the nurses are and the quality of care they give. 

I want to explain the process of the last month.  While I feel really great full that I was given the transfusion and I wasn't just blown off (again) I guess I just feel I need to... I don't know.

Around the 20th of August I started to notice I felt tired at work.  I wasn't sure if it was just because my parents were coming into town and I had just started work and school again or what but it was significant.  Within two weeks I was zonked and I was experiencing some scary symptoms.  I upped my b vitamin intake and the iron intake to twice a day and soon added a b100 at night.  I had been terrible about taking my vits this summer to be honest and I figured I had just run my levels low.

On the 4th of september I called my PCP to request a lab to check my levels but my doctors nurse was on vacation.  The nurse they had me leave a message with never returned my call.  So on the following day I called my surgeons office.  I spoke with a nurse (Tamara I believe was her name) that gave me a shocking level of disrespect (IMHO).  I told her my symptoms, which included palpitations, extreme fatigue, breathlessness, numbness and tingling in my left hand and fingers and sore and tingling tongue and lips.  My gums had turned a nasty shade of white and I was starting to get mental confusion.  Her response? First she said that I should have just called my PCP, then she told me I was probably just having an anxiety attack or dumping syndrome and then she told me that if I was concerned I should go to the hospital.  Keep in mind that during this conversation she sounded bored, disinterested and patronizing.

I was furious and extremely disheartened.  To say the least. 

This same nurse called me back the next evening and I flat out told her I didn't go to the hospital.  There was literally a full minute of silence on the line and when I said "Hello??" she said that she was still there and then there was another 30 seconds of silence.  When she asked why I didn't go to the hospital I told her that I would rather not pay 100 dollars to spend 8+ hours of my life in an emergency room just to hear that I am probably having anxiety or dumping.  Another long silence and I was ready to hang up on her.  She had the same bored patronizing tone and I asked her if they could order blood work to check my levels.  She agreed and then put me on hold.  When she came back she said the other doctor thought I should come in and made an appt for the 11th so that we could discuss the results.  I asked her if I had to fast for this test because that makes a big difference in my life and she said no.

I did not receive a call from my PCP to pick up my lab slip until noon on the 11th and my apt was at 2.  Again, I was furious. 

I go to school m w and f and work 3 hours a day from 10 to 1 so that pretty much leaves me tuesday and thursday afternoons and evenings to get anything done.  Tuesday I was unable to get to my doctors office to pick up the slip so it had to wait until thursday and guess what?  They wanted a lipid test so I HAD TO BE FASTING. 

I got an apt with my PCP for the 14th and when I described my symptoms to her she said I had acid reflux and put me on prevacid. I felt a little disheartened but she also ordered a chest x-ray and a test for pylori.

Well having class at 7am that pretty much left out any day to get the test until the following tuesday.  You see how this is going? I had the blood test in the AM and the chest x-ray after work.

Friday I called the surgeons office to see if they had gotten the results and the nurse I spoke to, a different nurse and a very nice nurse, told me they had not come in yet and made another apt for me for the 25th.

On the 24th my PCP's nurse left a message on my phone that my results had come back and that I was anemic and I needed to come in to get another CBC and start on a different iron.  On tuesday I went in and did the CBC and then that evening I went and saw my surgeons office.

When I got in they told me that I didn't have an appt and they would see if they could squeeze me in.  My surgeons office is an hour drive without traffic and after the ordeal I had been through and how sick I was you could imagine how I felt.  They got me in and while I am waiting to see a doctor I can HEAR THEM outside my room talking about me and contemplating if they should see me or send me home and making it out like I was a non compliant patient.  I wanted to crawl into a hole and pull the dirt over top of me. 

While the doctors were in talking with me they are looking at my chart and reading something about the phone conversation I had with the first nurse and saying something about me complaining of dumping.  ARE YOU KIDDING ME?? I may not be a damn doctor but I am 20 damn months post op and I have experienced dumping syndrome almost every day of those 20 months.  And it was the NURSE who said that, not me, but somehow her ignorant opinion was being projected onto me.  Also I was made painfully aware that apparently I am not suppose to be seeing my surgeon any longer, which I did not know, so I guess that won't be an issue anymore.

Well to end a very long story, while I was in the hospital my PCP's nurse called me and, I kid you not, told me that my doctor wanted to know if I was having any dizziness, palpitations or other symptoms of anemia.  I said "uh yeah, that's why I came to you guys in the first place."

So frustrated.

Still feeling sick

But who do I call if I don't feel better in a couple of days?

Apparently I need another referral for the surgeon, my PCP doesn't give a shit and apparently I just need some Xanax.

edit: I wanted to add that Dr Krahn is a very nice man with a wonderful bedside manner and his new(ish) assistant doctor guy, Brian, is very nice as well.  I also understand that Dr Krahn is a business man and that things have to be done a certain way.  I am very thankful to Dr Krahn for this surgery and I know that I have not been 100% perfect as a patient.  It is just disheartening to me when patients get caught up in the system.  And I feel that when I was obese any medical issues were blown off as symptoms of obesity, now they are side effects of gastric bypass.

PS the hospital nurse called me today to wish me well and left me a very nice message on my phone.  It really brightened my day.