Saturday, December 26, 2009


Surgery scheduled for 12/30... pretty much starting off the year as I began it, on that front.
Swelling again, which is very painful and makes mobility of any sort quite difficult and painful.
I am very nervous about all of this, and recently found a photo of myself from 2 months before this all began and can't get over it. I looked so good- I don't mean that in a cocky sort of way, but rather just that I thought, at that point, that I was horrid looking, and now... I look like hell and feel like hell and seeing me look that good is just baffling and brings tears to my eyes.
I really wish someone would give me a diagnosis and a treatment.
I am out of strength and will.

Monday, December 21, 2009

It has been a long couple of weeks.

Retina appointment on 12/16.
Improved 3 lines on the right and 2 lines on the left.
This is an improvement back toward my ORIGINAL crappy vision, not toward 20/20 or anything, but hey, progress is progress, right?
The bad news is that I do need more surgery on the left eye. Soon. "Before it starts bleeding again" sort of thing.
Also, the loss of peripheral vision is sort of a trade-off to keeping/fixing my central vision. It will not come back. That saying about how "you don't know what you've got til its gone" is so very true. I had no idea how useful it actually was. I mean.. I know its useful, but like... I don't know how to word it, do you know what I mean??

The next day.. I had 3 appointments right in a row: Nutritionist, Endocrinologist, and Echo-cardiogram. Was a full day. Pretty positive in most regards. I mean, the issues are still there, but we are working toward trying to figure out what is going on, get my appointments co-ordinated and such, and maybe get me working toward an insulin pump.

There is a LOT more to write, regarding more tests and more trips to the hospital, but I am still fighting off this bug, so I am going to stop for now and try to get some sleep.

Wednesday, December 9, 2009

Still sick.

Today, I have SLIGHTLY less pain in my throat, depending on the moment. Both of my ears still hurt a lot, and it is still difficult/painful to swallow.
I have been short of breath, and coughing a lot.
I have been drinking a lot of fluids, as I was instructed. In fact, the ONLY thing I have had today is 2 pints of chicken broth with mini croutons, two small shortbread cookies, and water.
The cough is sometimes wheezy, sometimes dry and hacking, and this evening there has been a LOT of thick, sticky, opaque white sputum- sometimes with traces of blood. When it isn't thick and sticky, it is frothy/bubbly.
My ankles are even more swollen than usual, as are the rest of my feet.
Also, yesterday, I had smoked salmon & cream cheese on a bagel for dinner, and my urine smells like smoked salmon now... and I have had tons of broth, water, and I pee a lot.
I would think it would be out of my system by now.. but I have never had this happen, and it is really bizarre.
My entire body aches. It seems to just keep getting worse. I don't know what to do.

Tuesday, December 8, 2009


My breathing is getting worse by the minute. I need sleep.
My ears are doing this weird thing between extreme pain and numbness from the inside out.
My throat hurts more and more and I am having variations between a dry, hacking, painful cough and bringing up mucus and blood. It hurts so much to swallow.
I have spots in my eyes again. My neck, back and shoulders hurt more than I think quite possibly EVER. I am freezing on my hands, and the rest of my feels hot.
I can't find my thermometer.
I can't breathe.
I can't go back to the hospital even though they told me to if exactly this sort of thing happened.
I am in so much pain, and I am so scared.


I was diagnosed with kidney disease on Thursday.
I had seen it mentioned in passing before, but this was to-my-face confirmation.
Don't really have any details yet. I am supposed to see the kidney doc ASAP, and go to endocrine dept every 2 weeks.
On Saturday, I was on my feet for a very long time and went from being hot inside to getting stuck in a snowstorm with not very winter-y clothing for a couple of hours. I swelled up about 5lbs that night.
I woke up VERY sick on Sunday and went to the ER. I couldn't speak much, both ears hurt, I threw up 3 times, yellow sputum with chunks of blood, neck, back, shoulder & head pain... the works. They did a chest x-ray and took some blood, gave me IV fluids, and sent me home with a prescription for Tamiflu & Tessalon Perles. The Tessalon Perles were not covered and cost nearly thirty dollars. (plus three for the Tamiflu)
They don't seem to be working.
I went back to the ER today. Well, I started at urgent care and they sent me to register and since I couldn't talk at ALL, I was taken by wheelchair "STAT" to the ER... where I waited for about an hour to be seen- and all they did was take my vitals, do a strep test, and tell me to "grin & bear it unless it gets worse" which is why I went in in the first place...
My breathing is so bad. I get winded drinking water. I know.. that sounds really weird. I don't even know another way to describe it.

Monday, November 23, 2009

New medicine

As I mentioned in my last post, my PCP put me on another drug to go along with the Lasix.
It is IC Metolazone. It's a 2.5 mg tablet.
I have gone from 250lbs last week to 239lbs today. I really hope it keeps working. I need to lose all this excess fluid.
My PCP also called this morning to check on me, because I guess there are some similarities to Sulfa, which I am allergic to, in the new drug, and she wanted to know if I'd started taking it yet and make sure I am okay. I have been on it for a few days, and don't seem to have any allergy-like symptoms, so that is good.
I know that this can cause a potassium drop, so I am trying to have things high in potassium to avoid that.
I got a letter from the diabetes nurse telling me that my Vitamin D level is very low. (despite the fact that I am on Vitamin D daily) and sent a script for a weekly dose, which is higher.
I am going to call my PCP on that to figure things out.

Friday, November 20, 2009

That didn't take long...

I pretty much called my PCP crying because I am so sick over this whole thing.
I told her that there was no change/I got worse while on the Torsemide. She has said to go back on the Lasix, and is starting me on another diuretic to take WITH it. I don't recall the name, I have to pick it up tomorrow and will start it then.
I was also told to make sure my potassium levels get re-checked next time I go in, to make sure that everything is as it should be in that regard.
She also said that someone should be calling me about getting an echo-cardiogram shortly.
I am having really weird chest pains today.
Very random.
It sporadically feels like someone is stabbing me in the right side of my chest.
It hurts.
I am not doing anything too strenuous today... no idea why this is happening, it started a few hours ago.
I am so sick of this.

Wednesday, November 18, 2009

I guess I should do a basic round-up.

On a somewhat unrelated note, I fell down some stairs this weekend.
Went to the hospital via ambulance when ibuprofen didn't help.
As I expected, nothing was broken, but I sprained my wrist and knee. I was given immobilizers for both as well as a cane.
Kind of hard to get around with them, and not entirely sure that they are helping. I am in pain, but trying to push through. I have not filled the prescriptions for pain medicine yet. I hate taking extra pills... but damn, this all hurts.
What I could really use is a decent massage. Heck, I could use any massage at this point.

So I have been on the new diuretic since Saturday. It is called Torsemide. No longer on the Lasix.
So the current med list is as follows:

Lantus ~ 50 units in the morning
Humalog~ 12-18 units with meals
Diovan~ 80mg
Levoxyl~ 100mcg (can't remember if I mentioned that my endocrinologist upped that last month or so...)
Zyrtec~ 10mg
Torsemide~ 20mg
Vitamin D~ 2/400 unit tabs

Study medication, which may or may not be a low-dose of Cymbalta (I am off of the Topamax temporarily for the study... and also that gastroparesis med)

No prescription:
Vitamin B Complex+C~ 100mg
Cinnamon~ 500mg

I really don't know if the CPAP machine is working. I ordered a new mask over a week ago now and it still isn't here, so I am using the one that bothers me quite a bit, and nobody has bothered to return my calls about that.

I have had the flu shot and the H1N1 shot. I was given Azithromicin last week when I was feeling like crazp, and after they had been telling me for 3 weeks to take Sudafed, which I did, and it didn't help.

I swelled up last week to the point where my legs where tight, shiny, and immobile. (along with the rest of me...)

I am so sick of going to doctor after doctor, after doctor and getting NOWHERE. No answers. Okay, if you don't know, how about you keep looking til you DO know? What do these people get paid for? "Oh, your electrolytes look normal and all" Okay, so what else could it be?
If my kidney function is good, then its not, then it is.. how about we investigate further?

Are we forgetting a few months ago when the allergist refused to do the tests? Outright refused? What if this is all a huge allergic reaction? But to what? I don't only swell up in the house. I have been swollen for 18 months now. It makes me sick to look at myself.

I am a good person, but people don't look at that. They look at the fact that no matter how damn actuve I am (and I am NOT a sit-around, lazy person. I am a here, theer , and everywhere person) the swelling holds me back and makes me look like a giant fat blob. I am carrying 100lbs of fluid around in me, and I can feel it, and it makes it hard to move, and it makes everything hurt all the time.

I am scared out of my mind, and I just want to be back to size 14-going-on-12-and-losing again.
I miss being somewhat decent looking. I miss being happy. I miss being able to kneel and bend and stretch and touch my toes and all that stuff that normal-ish people can do.

Wednesday, November 4, 2009

Here we go again...

On Monday night, I wound up going to the ER.
I was out of Lasix and didn't know it, but I was swollen like crazy BEFORE it was time to take the medicine. I swelled up about 10lbs over night.
The skin on my feet, calves and whatnot up to my knees.
My thighs won't even go together properly, and I can FEEL the water with my hands.
It is so painful.
A small rash type thing developed in my right ear and on the back of my neck when the swelling happened.
I was put next to a doctor who was doing dictations and I had a panic attack/PTSD episode because he was dictating some very graphic abuse.
They gave me an Ativan and IV Lasix and pretty much kicked me out the door.
The discharge sheet says that I swelled up because of my missed dose, even though I told them MANY times that I was swollen BEFORE missing my dose.
I am STILL swollen, even though I have had my Lasix as I normally do now.

I have an appointment with a sleep neurologist tomorrow, to follow-up about the CPAP machine, and an appointment with the diabetes nurse on Friday.
I also have a fibro-study visit on Tuesday and an appointment with my PCP on Wednesday. Here's hoping that I get some relief!

I am so swollen. My knees won't bend very much and it hurts so much.
I need a diagnostician. Immediately. I need to know what is going on.

Monday, October 26, 2009

I don't know what to make of anything, really.

I am in so much pain.
I am still swollen.
I have exercised so much, and I am still heavy and huge because THIS. ISN'T. FAT.
Can you imagine being treated like some lazy fat bum everywhere you go?
That is my life.
I look like hell and everyone assumes it is my fault.
The doctors, they all tell me I am sick, but they don't know why, so they all default to asking me if I eat a lot of salt and drink a lot of soda.
a) The answer is NO to both questions
b) Even if I did, NOBODY could eat enough to gain 30lbs in ONE DAY and 70 more within the week. It just. doesn't. happen.
I have actually been nearly 100% soda-free for about 3 months. I have had a small amount here and there, but I have been drinking mostly water and juice.
I don't eat much at all.
I walk a LOT.
I have spent the past 2 weekends pretending that I am not sick. I participated in a few local goings-on, all of which involved a HUGE amount of exercise.
I haven't lost an ounce.
Now, I am paying dearly for the "fun" I had. I can feel every muscle in my body right now and they are all VERY angry at me. I have had about 5 hours of sleep in the past 3 days.
My breathing is not that good and I have been getting massive heartburn at night, even when I don't eat anything. I am wondering if there is any way it could be related to the CPAP machine, what with it blowing air into my lungs, maybe just irritating them? I don't know... all the respiratory company cares about is their money, so they won't talk things out with me.

I was supposed to see a dietitian today, but I was in so much pain, I canceled because I couldn't handle the commute on public transit, and I also was in no mood to get talked down to about my weight, when all the damn weight is FLUID that they won't tell me how to get rid of.

I am scheduled to meet with one of the sleep doctors in early November, I think.

I am so exhausted. I am tired of fighting. I tell people I do these things I shouldn't be doing because I can't let the illness get me down and I have to live my life. It is partially true, and partially that I am a better actor than anyone gives me credit for. The truth is that I am falling apart and I struggle to stay alive every day. The truth is that I am scared. The truth is that most of the people who call themselves my friends have not been there for me. The truth is that I don't have nearly as much energy as I sometimes appear to have. The truth is that every time I take a step, or a breath, or I move my hands or feet, or anything else, I am in a world of pain. The truth is that I feel like I am suffering a fate worse than death, because being dead can't possibly be this painful... I just wish that the trip I seem to be taking to get to the other side wasn't so damn long and painful.

Monday, October 19, 2009

I guess it has been a while again...

I had another surgery.
Left eye.
Found out I am ALLERGIC to the stitches that are IN MY RIGHT EYEBALL... and that is why I am not healing all that well...
Got the CPAP machine, am having a lot of trouble with the full-face mask.
I need to call the nurse and see if there is anything that can be done about that.
I am taking part in a Fibromyalgia medication study, so I may or may not be on a low dose of Cymbalta. I had to stop taking the Topamax and the gastroparesis med in order to participate.
I am still swollen. I have no clue what is going on.
Things are getting worse, no matter how hard I fight.
I don't know how much fight I have left.

Tuesday, September 29, 2009

Ups and downs

So I am still on drops from the vitrectomy. My eye is healing slowly. I am still in pain, but doing the best I can. I am having more surgery on the left eye next week, but this one will be laser.

I have been trying to get out and about as much as I can to get exercise in as much as I can.

I still don't have a CPAP machine. The company actually called yesterday to tell me that I was all set and someone would be out soon to set me up. They called not 5 minutes later to tell me that "wait a minute... you might not be approved" meanwhile, I stop breathing at night and cough up a good couple of tablespoons of nearly solid gunk when I wake up choking. It isn't fair.

I can't remember if I mentioned that my endocrinologist thinks I may have gastroparesis and she put me on a medicine called IC metoclopramide. She also upped my Levoxyl to 100 mcg.

Other than that, my med list remains the same as the last update.

I guess that's all for now.

Tuesday, September 15, 2009

As best I can...

I am fairly blind right now, so I apologize for the many typos that wull likely appear here. I had the vitrectomy on the 8th of September and am still recovering. I can not see text very well, though i can see other thoings a biot more clearly than I could on day one.
When I went in for my 24 hour follow-up, the docs had to put anestetic on my eye just to be able to open it because it hurt so nad. I'm not going to lie, I screamed. It was dreadful.
Now, it is itchy and painful, but a little clearer, and I am keeping up with my drops and not taking percocet as frequently as I originally needed to.
I had an endovrine appt o the 10th and teh doc saod she wanted to up my thyroid med because she though I need that, and also that I probably have gastroparesis (?) and she prescribed a med for that.
We shall see, I guess....
Well, this is taking a lot out of me, so I can't really type any mmore right now.
Just wanted to update briefly.

Wednesday, September 2, 2009

Previous post

I have no idea why the previous entry is not showing up as a normal entry.
If you just click on it to highlight the text, you can read it.

Apparently you need to highlight this to read it, my apologies.

Below is a letter to my PCP from my kidney doctor, with names, locations and such removed.

Kidney disease. They kind of left that out... like, ever.

Also, I don't eat a lot of salt. I don't eat a lot, period. I am very active, as I am able.

The weight went from 165/170 to 250 in a matter of THREE DAYS, not the course of a year. It has been over a year that I have been fighting to find out WHY. This is all fluid.


Dear Dr. Xxxx,

I had the pleasure of seeing your patient today for follow up of edema,
weight gain, and chronic kidney disease. As you know, I saw her a few weeks
ago. Since then, the following events have been notable:

5/19: upro/cr 316/439, na 131, cr 1.0, gluc 366

Received echo report from OSH - normal

6/10 saw endo, dc'd actos. Considering metformin. antigad ab's 4.6 (high),
a1c 10.9. vit D 6, using insulin pens and finding that easier

Saw pcp who rx'd vitamin D. LDL 163. rx'd gemfibrozil which she stopped.
Planning to refer to lipid clinic

Had ucx positive for klebsiella. Rx'd cipro.

Renal history and history of edema: patient reports acute onset edema and
SOB on the evening of 5/9/08. She went to the ER and was told it was all in
her head and shortly thereafter was discharged home. SOB improved, and
edema somewhat improved, but since then, she has experienced recurrent
episodes of acute onset edema, as well as steady massive weight gain (170lb
> 250 lb per her report). She has been tried on diuretics, but this led to
increase in bun and creatinine (cr 0.9>1.3) and did not significantly help
her symptoms so it was discontinued. Work up to date has been significant
for the following tests:

- creatinine 0.9 on 3/11/09

- bun low teens > low 20's over past year (20 on 3/11/09)

- urine protein: no microalbumin 7/30/07, 24 hour urine protein 254 on
incomplete collection 3/11/09

- BNP 20

- Tsh 2.7 on 3/6/09, 3.0 on 2/23/09

- Ana positive 1:320 11/5/08, 1: 160 on repeat, then 1:80, then negative.
Esr 47 then 27, c3 169, c4 37.

- Cxr normal 3/11/09

- Ch7 3/11/09: na 137, k 4.3, cl 97, bicarb 31, bun 20, cr 0.92, gluc 146,
ca 9.1, phos 4.5, lft's normal, wbc 11.3, hb 12.8, plt 314.

- Abd ultrasound: liver coarse echogenicity, 24x16x23 mm echogenic lesion,
spleen normal, MRI recommended.

- labs 4/28/09: tsh 1.86, ESR 27, 24 hour urine 129 mmol Na, 1695 mg pro,
pro/cr ratio 1165/845, vol 1455, free cortisol 19.7 (normal). cr 1.13, IFES
no abnormal bands, rf neg, rpr neg, ana pos 1:80, nucleolar pattern, anti
centromere neg, anti histone neg, lyme neg, aldo 1, renin 1.

- labs 5/09: bnp 21 (normal), ds DNA neg, anti scl neg, anti rnp neg,
sjogren's neg, ana neg, c3 and c4 not low


- DM1 onset 1987. on insulin from outset. Retinopathy post laser rx x 2 so
far. A1c's have been 12 for years, though recently 9.5 per her report.

- Asthma

- Fibromyalgia

- Hypothyroidism

- No history hypertension (on diovan for proteinuria/DM)

- 2 LEEP's. ingrown toenails, cyst R thigh removed 6/99. no pregnancies.

- Pyelo 2/98

- C-scope 1.5 years ago normal

- Gastric ulcers

- Emotional lability

- (hospital) records (hosp for F/desat, MRN xxxxxxx, 000-000-0000): 1/23/09
CT: Effusions, several areas of patchy consolidation. Bronchial PNA and
likely also flash pulmonary edema. Irregularly enhancing liver lesions rec
MRI, and fatty infiltrate. Irregular lovulation of R kidney, kidneys
otherwise normal appearing. CT abd noncontrast otherwise unremarkable.

SocHx: no tob, rare ETOH, no drugs. On disability. Schooling: some college.
Lives alone (wi 3 cats), steady boyfriend, supportive family nearby.

Fam Hx: mat GM died of kidney failure onset after heart surgery. Mat uncle
kidney stones. Otherwise no renal history. Father had DM and stiff-persons

ROS: says ballooned up again June 9th to >260 lb, shiny skin. Went to (hospital). Rx'd lasix 40' for a few weeks and wt came down to 243 and has
hovered there since then. Now on lasix 80'. Cough improved. Walking and
swimming. Says PO intake less secondary to n/v/diarrhea. Believes she has
a low sodium diet. No dysuria. Had hemorrhage in R eye (retina appt
tomorrow). No nsaid use. Chronic DOE (few stairs, not at rest), Chronic
pain - different kinds, throbbing and shooting in bilateral extremities,
also LLQ abd pain. Constant L subchondral (lateral) pain, worse with
valsalva. Acne neck, back and chest past year or so. Intermittent
headaches. Neuropathy hands and feet. Snores a lot and fatigued during the
day. Menstruates regularly. No dysuria, hematuria, urgency. ROS otherwise
negative or noncontributory.

Meds: per logician, is taking diovan. ranitidine prn, albuterol prn, flonase
prn, rare Tylenol, rare advil (not in some time), No herbal or other OTC
meds. Allergies: actos ? contributed to edema. lisinopril > cough, sob and
wheezing, sulfa, cephalasporins, statins, acyclovir, codeine, bactrim.

PE: 104/70, HR 100. wt 243 (from 248 at last visit, 248 prior). Alert and
oriented young woman, obese, in NAD. JVD difficult to assess secondary to
habitus. Lungs CTA bilaterally. H RRR, no MRG apprec. A soft, nontender.
nonpitting edema bilateral LE's, with 1+ pitting bilaterally.

Urine: Sed accidentally omitted today. Prior visit was: WBC's, +bl, rare
dysmorphia, no casts.

Labs: cr 1.18, k 4.2, upro/cr 60/641, microalb 43, ua 2+gluc, no pro, no bl,
no wbc. Ucx negative. Renin 54, aldo 8, wbc 14.9, hb and plt normal. Pth
36, vit D 17.

A/P: 30F, history poorly controlled DM1 with retinopathy, treated
hypothyroidism, fibromyalgia and obesity, following for edema, wt gain from
170>250 lb over the past year, in the context of near-normal creatinine,
minimal proteinuria, and dips positive for blood with relatively benign

GFR: cr slightly elevated today 1.2 from baseline of 0.9-1. likely
intravascularly volume depleted. Elevated bun/cr ratio supports this, as
does elevated renin (though these both could also be effect of diovan).
Follow, and if increases further would consider cutting back on diuretics.
Review sediment next visit. Can have dysmorphic hematuria just from
diabetic nephropathy, and as long as creatinine and proteinuria stable
would not necessarily investigate further, but will follow. (flagged endo
and asked to get a ch7 when she is in on sept 10th)

Re: the weight gain and edema, likely multifactorial, endocrine following
and working on diet and insulin dosing. CHF, hypercortisolism, myxedema,
and secondary lymphedema from CTD have all been ruled out. Increased
dietary sodium intake likely playing a role, supported by fact that she had
modestly elevated 24 hour urine sodium on check 4/28/09 and suppressed
renin and aldo then (has since come up on lasix). Has been counseled on low
salt diet/ hidden salt. Classic edema from actos may also have been
contributing. Timing was not suggestive of edema from diovan. Primary
lymphedema hasn't been ruled out yet, though relatively rare. Will defer
to PCP to work up further if they feel indicated.

Re proteinuria: IFES no abnormal bands. Likely from poorly controlled
diabetes for many years (has other sequelae as well - ie: neuropathy,
retinopathy). At goal on diovan. Continue diovan and continue to avoid
nsaids (has been counseled on this).

Re: polydipsia/polyuria, intermittent nature of symptoms consistent with
effect of hyperglycemia. Not an issue on recent urine collection.

Misc: referred for sleep study last visit -scheduled but hasn't happened
yet. Will defer to PCP for MRI to follow up liver lesions.

HCM: recommend pneumovax. Will also need flu vax and H1N1 vax this season
when available.

Thank you for giving me the opportunity to participate in the care of this
patient. I look forward to seeing her back in 6 months, or sooner should
any acute issues arise.


Xxxxx Xxxxxxxx, M.D.



I am fairly certain that I am allergic to the pneumonia vaccine. I seem to recall having a pretty bad reaction to it a few years ago.

Not quite sure how I feel about this H1N1 thing. Seems to be jumping the gun a little bit. We don't know much about what I have OR about H1N1...why combine two mystery illnesses?

As for the MRI, I had that repeated a few months ago. I will have to see about getting the report to the new PCP and the kidney doc and see what they think about comparing the two studies.

Saturday, August 29, 2009


My pre-op appointment was pretty traumatic.
The doctor didn't even check for allergies. What the hell is that?
He also didn't know what I was coming in for, and was really nasty when I did not know what exactly was being done and every little detail about it. (In my defense, I asked, and was told that I would be informed AT THE PRE-OP)
my eye is still very bloody and gross-looking. It feels all scratchy and I am very stressed out. The appointments on Thursday and Friday were both just very, very bad.
I will elaborate more later. I don't have the strength at the moment, and I have things to do.

Friday, August 28, 2009

Doctor My Eyes....

So, the Avastin injections were scary and painful.
My right eye bled and the blood is still visible. I am still in pain, but it is not too bad, just rather annoying. I have to put antibiotic drops in four times a day through tomorrow.

I was able to see the show on Wednesday, so that was nice. It was not perfect vision, but it was MUCH better than I was expecting. I will take it, gladly.

Yesterday, I met with a Sleep Disorder Fellow. She was nice, but her superior... not so much.
The fellow mentioned that when I was in for the sleep study (which I had to inform her I had already had) the report showed that (besides the apnea) I cried in my sleep. I had no idea. Nobody ever told me that. I told her I wondered if that MIGHT have been an isolated incident, via a PTSD trigger. I remember VERY clearly that night that just as I was finally falling asleep, there was a HUGE trigger factor on a news broadcast and I woke up with a jerk-type motion and then it took me a while to get back to sleep. Maybe when I finally did, that is when it happened? I have no actual idea, I am just speculating.
The superior came in and said that he does want to fit me for a CPAP, but he also pretty much said that he thinks I am crazy and should be calling psych too. He pretty much laughed in my face when I said I wanted to try to stay clear of any anti-depressants that had a COMMON side effect of edema because of this whole situation. So what... I shouldn't be looking out for myself? Whatever, dude. Nice of you to introduce yourself too...

Today, I have a pre-op physical. I am going to have to get there on my own. I am kind of nervous about it. I got to yesterday's appointment on my own just fine, but today's is in an area that is a bit tricky to get to with compromised vision/mobility. Hopefully the assisstance I THINK I have set up is a sure thing.

Sunday, August 23, 2009

Yeah, definitely not good...

So I went to the retina doc on Wednesday and I will be going back this Wednesday and having injections in BOTH of my eyes. If I recall correctly, it is called Avastin and I am not looking forward to it. I was supposed to see a show that I have been looking forward to for 14 years on Wednesday evening... and now, I don't know.
Obviously, my eyes are more important, but this isn't something that is going to be a thing I can "just catch another time" so I don't know.... argh.
Anyway, so then I get to go back 2 days later for a pre-op appointment for my INVASIVE surgery which I will have the following week. (because 3 needles in each eye in one day is not nearly invasive enough...)

Then I get to have the aforementioned invasive surgery and I am scared out of my mind. I will have to go back the following day for a follow-up too. I can't quite wrap my mind around all of this just yet. I really can't.

Tuesday, August 18, 2009

Not good.

On Friday, I was on my way to meet a friend and go on a cruise in the evening. While on the bus on the way in town, I got a HUGE hemorrhage in my left eye and a small one on the right. I knew that ios what they were because it had happened so many times. The doctor wanted me to let him know if anything happened between my last appointment and my next one, which was scheduled for late next week, so I called. I spoke to the retina fellow on-call and was told I would be safe to go on the boat, but to move my appointment to this week. So I moved it to Wednesday.
My body had other plans.
I woke up yestdrday, half blind. I had to keep checking to see if my eyes were really ioen is the best way I can think of it. I called the retina doc's office and was told to go to the ER and have the retina fellow in-call paged. I did this, and was told that I have new hemorrhages in both eyes and that the right one (usually the good eye) was worse and has "streaking" biut this was not really explained to me.
I was told to keep my appointment for Wednesday with my retina doc and that I may have to have invasive surgery on one or both of my eyes. This will be determined tomorrow, I guess.

Today, I went to the kidney doctor and she took more blood. Other than that, it was just basic discussion and my weight has dropped slughtly since the last time I saw her (which was in May)

I have lost about 18lbs since my last trip to the ER (early June) but have been at a standstill for the most part for a couple of months. I am doing the best I can to exercise as much as I can, like I said, and eat a fairly healthy diet when I do eat.

I apologize for the many typos that i am sure are in this entry. My vision is serevely impaired and I do not know if it will get better. I am trying to hard to remain hopeful, but I just keep gettning knocked down. I don't know how long I can keep this up.

Wednesday, August 12, 2009

Yet another pause...

I got a call confirming my appointment for Friday with the diabetes nurse yesterday.
Less than an hour later, I got another call canceling it. I guess someone in her husband's family passed away.
Understandable to take time off, but this was the first appointment I have had in a long time and I have had no answers as we all know.
My weight is pretty steady.

My breathing is getting worse. I can't eat much, and when I get hungry, I get so hungry it seems that I need to eat a lot and I don't know when I should stop.

I have been in so much pain, I am so swollen, and I am drained. Just completely drained. I am doing the best that I can to exercise as much as I can. I walked a few miles on Thursday, about a mile on Friday, the next few days, I don't remember exactly, but I am sure I did something.
Tuesday, I went swimming for nearly 2 hours straight, possibly a little more.

I really wish I had the ability to get somewhere to swim on my own. I mean, not that I don't like company, but the fact is that nothing is accessible by public transit. Someone has to TAKE me somewhere, I can't just go- I have to depend on others. It stinks. If I could afford a gym membership at a place that had a pool, I would totally use it, because I can exercise without injuring myself. Right now, even walking REALLY hurts.

Wednesday, August 5, 2009


So I was informed today that the sleep study revealed that I do stop breathing when I sleep.
I have to wait for a call from a different person in the lab to schedule an appointment to meet with a specialist to discuss sleep patterns and the possibility of a CPAP machine.

Still at a standstill with the weight/swelling. Still in pain. Still dehydrated. Still don't know what is causing all of this. I am glad I have ONE answer... I just wish that it would help with the other stuff.

Tuesday, July 28, 2009


I don't quite know what to do.
I had a swelling episode a couple of weeks ago.
It seems to have mostly gone away and have been an isolated incident in relation to being a female.
Still, it was scary and not "normal" at all.
I am on 80mg of Lasix a day and I am not losing any more weight, despite having been on this higher dose for quite some time now.
I can bend a little better and walk a little more.
I am pushing myself as best I can.
I am doing the very best I can to stay positive about as much as I can, but I still have an extra 70ish pounds on me that shouldn't be there and it makes me damn suicidal to see photos of all the progress I made before and then to look at me now and see what a blob I am and know I can't do a damn thing about it.
I go in to get my eyes looks at tomorrow, as I have more bleeding... oh joy.

Sunday, July 12, 2009

I guess it has been a while...

I found out that my potassium/sodium levels are fine on the Lasix, but that I have high cholesterol. I am not sure of the exact number though. I am allergic to statin drugs though, so I can't take the usual stuff. I was put on Gemfibrozil and was taking these monster pills twice a day, but I was feeling really, really bad and I called my PCP and was told to stop taking it and we will just revisit the options at my next appointment which is not yet booked.
I also have not heard from the retina doc's office yet about making that July appointment so I am a bit concerned about that too.
I will be giving them a call tomorrow to see what is going on.
I am still swollen, but I am down to about 243 from 260 a month ago, so that is good. I had plateaued for a bit and my PCP doubled my Lasix, so now I am on 80mg every morning.
I think everything else is the same, medicinewise.

Wednesday, June 17, 2009

Brief update

I never heard back about the MRSA swab, so I can only assume that either it wasn't MRSA, or the blood that they swabbed did not have anything in it (they weren't able to get any of the pus type stuff out of the mess on my back/neck/shoulders).
I have finished the Clindamycin and some of the rash does seem to have gone away, so that is good.
I saw the endocrinologist and she seems very nice.
She lowered my dose of Lantus by 10 untits and put me on plain Humalog as opposed to the 75/25 mix, and I am now taking that a few times a day. (with meals)
I have lost between 7-10lbs on the Lasix so far, so here's hoping that it continues to work...
I did see my old new PCP on Monday, so that was good, despite there being a crazy crowd at the office. She said that the bloodwork the endo took showed that my vitamin D was low, so she prescribed vitamin D, and she re-tested the Potassium level because Lasix can make thise levels low and I'd only just begun when I saw the endo. We shall see.
I am still swollen, still in pain, but I am still plugging along hoping, and searching for answers.

Tuesday, June 9, 2009

Floating away... if only...

So I swelled up some more, and it got so brutally painful.
The skin problem spead and worsened and became unbearable and I could barely even sit in a normal chair, let alone get up and down like a "normal person".
We'd gone to a show earlier in the day, and as I sat down in the seat, my calves brushed against the front of the seat and folded over themselves, in a sense, and just... I don't even know how to describe it, but it hurt like hell and for quite a long time.
I was much worse when we got back to my place and finally I gave in and said that I needed to go to the hospital.
They did seem to listen more than in the past, I will give them that. They also admitted that they could see and feel the fluid in me.
They took a urine sample and a chest x-ray. Taking blood was quite a fiasco. I was stuck 2 or 3 times in my left arm and they couldn't get anything. Same with the right. So they came back after my x-ray and went for the artery in my right wrist... fun, yes? Ugh. They tried a few times there and wriggled the thing about a bit while I was told to NOT MOVE WHATEVER YOU DO!!! and still nothing. Yes, I am that damn swollen. Then they tried the artery in the left wrist, and finally, after wriggling about and taking around 15 minutes or so for 3 vials of blood, they were done with it.
Nothing really came of it.
The doctor did try to swab the nastiness on my neck/back for MRSA. There was no pus or anything at this point, but he lanced one and is culturing the blood. That can take a couple of days, I am told.
I was given a prescription for Lasix (40mg) and Clindamicin (antibiotic) and sent home. What I don't understand is why they gave me only 15 days worth of Lasix and why they are using the same dosage which has proven useless in the past. Oh, and I also don't get why they didn't give me any while I was there... do they EXPECT me to live near a 24 hour phanrmacy?!

This morning, my old PCP called. (I had left her a voice mail last week after the new one screamed at me) I have an appointment with her on Monday morning, so here's hoping I can get there. (I left initially because I moved a fair distance from her office, but now that I can't walk the mile to my new, local, abusive PCP's office due to mobility deteriorating, I guess its kind of moot now, isn't it?) Here's hoping things get a bit more organized.

Tomorrow I see an endocrinologist for the first time in many, may years.
Thursday, more lasers.

Wednesday, June 3, 2009


So I had the laser done to the right eye last week. I go in in a little over a week for the left eye. Right now I still have spots on the left eye and honestly can't tell if I have new bleeding or if the spots/blurring I have now is still from a couple of weeks ago. It is really quite frustrating. Scary too.

I spoke to the PCP today and he actually screamed at me. Mind you, I was not even accusing him of anything. Despite the fact that the fact that he did not do what he confirmed three times that he did do is HIS FAULT, I was not placing any blame or making any accuastions, I simply said that there must have been some lines crossed with the electric company because they don't have the letter so could be please send it again. Now, had he done it in the first place, he would have just had it to re-send. He didn't. I gave him all of the info again. He screamed at me that my electricity is not his problem, which it isn't, but keeping it on he can help with and I really don't see the gig deal. It is one sentence- literally, that they need from him. I pay my bills, like clockwork for the most part. I have been slightly lax with the electric because of extra medical junk going on BECAUSE I could get the protection. He claims that it isn't his problem. Well, if he can prevent it and he doesn't, and I wind up an asthmatic who can't plug in her nebulizer which runs on electricity, or cook food on her electric stove, or heat/ventilate her bathroom, or refrigerate her insulins... you see what I am getting at here?

Anyway, so moving on, I have swollen up even more. I am very nearly 260lbs now, despite the fact that I have been pushing and pushing and pushing myself all of the time. I walk as much as I can, and thensome. I don't eat all that much. I just don't get it.

I am in so much pain. My legs are getting worse, I not only can't nend them, but I can't extend them fully either. I wake up with my face swollen- moonface. My toes are so swollen that they have their own rolls over themselves and cut off their own circulation, as crazy as that sounds. It is not fair. I can't ned down to scratch. There is so much that I can't do.

I am scared.

Tuesday, May 26, 2009


Still no word from the PCP.
Now I am getting shut-off notices from the electric company because he clearly did not send the fax that I practically wrote for him and brought to him several times and confirmed with him, several times, in person, with witnesses, that he has in fact, sent the information to them.
(The information being that I am chronically ill and need my electricity no matter what.)

Last Saturday morning, very early, I got a big black line in my left eye. It then turned into two, and then into two lines of dots. I was alone and scared out of my mind. I wound up having to take a taxi to the appropriate medical facility, and after 4 hours or so of pretty much sitting there and choking on my own tears (literally) I was told that there was a lot of blood and that it is because I am a diabetic. I was told that there was no other possible explanation and that I needed to go home and wait for teh Retina Department to call me on Monday.

Monday rolled around and the phone rang. It was the right place, asking for the wrong person, and stuttering badly while doing so. I explained that she was calling me and not the other person, but that I was expecting a call, and was told that someone would be calling "any second" to schedule my retina appointment. I let over half an hour pass and I called my retina doc's office and found that they knew nothing about Saturday's situation. I was immediately scheduled for an appointment the upcoming Wednesday, which I went to.
I do have bleeding, but they don't like the way the doc in the ED handled it. I do need more laser surgery and that starts tomorrow. We are starting with the right eye to give the left eye some time to do some self-healing. The left eye will be in a couple of weeks.

This whole thing has my nerves at their very end.

I am also swelling more. I have been as active (and more active) as possible in my extremely painful condition, I don't eat much, and yet I still gain weight and it is ALL swelling- it isn't fat. I know fat. I have been fat. I'd have no damn problem if I were fatfat and it was my own doing. THIS IS DIFFERENT. I can NOT MOVE. It hurts. I can't cross my legs. I can't bend my legs up to put my socks on. I have trouble dressing and undressing and doing day to day things. My life is being severely altered and nobody seems to care to want to find out what the hell is going on.

Thursday, May 14, 2009

Okay because my life needs more confusion...

I don't think I mentioned that on my most recent appointment wit my PCP (April 27th) my mother had to take me what with the being very swollen and the eye surgery 2 days prior and the still being in pain from the car accident where the airbags didn't deploy.... anyway, some other people also came along because they didn't really have a choice.
The nurse/secretary was NOT happy about this and was rude and nasty and allowed me in for my noon appointment at nearly 2pm (while keeping a 10 month old and a woman with MS waiting with me) The PCP supposedly swabbed me to check for MRSA, but I have not received any results, nor have I been able to get taken off hold to get any answers (this woman is the only person who handles anything, it seems)
So on the 12th of May, I got a piece of mail from a collection agency supposedly about a bill for $34 from the PCP. I had never gotten a bill, nor should I, because I am insured, and disabled. There was no "date of service" on the bill and the agency did not answer, and had a fake v oicemail. Ironically enough, the agency number and the PCP number are only one digit off...hrmmmm....
Anyway, on the 13th of May, I got a hand-addressed envelope from the Dr.;s office and inside was a bright orange paper that said it was a notice of small claims trial to be filed within 30 days if I didn't pay the $34. Let me tell you, I am NOT paying the money. I do not owe it, and I was never sent an actual BILL, so they can spend the well-more-than-34-dollars it will cost them to take my disabled ass to court so I can watch them lose.
I called and had the doctor paged and asked him what was going on, and he stated that he would find out and let me know what was going on tomorrow, which would be today, and given that it is 7:11pm now I am fairly certain he isn't going to do jack shit.
I am going to have to type up a letter and send it certified and get this matter addressed. The whole thing is just ridiculous.

On Tuesday (I think) I get to travel for like 5 hours on public transit to pee in a cup and come back home. Such a good use of my time...

I would really like to know what is going on with the tests that they took while I was at my appointment on the 5th of May. Nothing accute doesn't mean nothing to report. I need to know what is going on and it is my damn right to know what is going on.

I actually left a voicemail with Johns Hopkins Hospital at 12:48am last night/this morning because I am that damn desperate for answers. I left another one today. How would I get to Baltimore if they thought they could actually do something? I have no idea, but I will cross that bridge if and when I ever get to it.

Tuesday, May 12, 2009

I don't even know what to say.

I was diagnosed over the phone by some "renal fellow" with Lupus a couple of weeks ago (oh, and this was five minute before going on stage for a final dress rehearsal- nice huh?) After many back and forth phone calls, I spoke to my actual renal specialist who said that I do still have a positive ANA, but that it was not a Lupus diagnosis.
She'd tested for many things, and after having me off of the Actos and the Diovan for a month or so, there was protein and blood in the urine (24 hour) and it was still there when she tested it when I had an office visit on the 5th of May. I had more blood work done, including a repeat of the ANA and I have to go back next week for another urine test.
She did tell me to go back on the Diovan and Actos to see if that would remove the protein from the urine, as this is a sign of diabetic kidney failure, apparently. Great.
She wants me to see an Endocrinologist, and since being seen (in renal) on the 5th I have not heard from them or been able to get through to get an appointment.
I did try to get one schedule while I was there, as the doctor said that he secretaries were SUPPOSED to do that, but they are actually all very rude, nasty women and just said "they'll call you!" and shoved me out the door almost literally.
I have been very, very swollen and in a lot of pain.
I have maintained at about 248lbs for a while now, but that is still terrible and painful and the breathing has been not so great too.
I need a DIAGNOSIS, not treatment of symptoms. I have had little to no treatment anyway, but the treatment I have had has done nothing. I need real help, and I do not know where to turn.

Tuesday, April 14, 2009

I guess it has been a while..

The day after I last posted, I was in a serious car accident.
Thankfully, I was wearing my seat belt, as was the driver. We were both injured, but survived, and there were no other vehicles involved.

Separate from the on-going medical stuff that is already going on, on April 6th (day of the accident) I was taken to the ER via ambulance on a backboard in a cervical collar. My glasses were ruined.
They took a head CT, chest x-ray, abdominal CT, and left ankle x-ray. Nothing for pain. They waited to take the cervical collar off even after the tests cleared me because they said that the type of pain I was having indicated that there may be some sort of break in my neck and they wanted the attending to check it out. She cleared me.
On the 8th, I had visible bruising on my abdomen and increased pain. I had headaches isolated to the left side of my head and going down to my nose. I tried to get back to the ER via public transit, but got worse, so I wound up getting of the bus and getting an ambulance. They took blood from my groin because they couldn't get any from my arm. That was NOT fun. They did an ultrasound of my belly and that's about it. They did give me insulin even after I told them that I did not need insulin and that it would cause problems if they gave me any. They gave it anyway, which resulted in me getting soaked with sweat and shaking and being quite out of it with a blood sugar of 44, at which point they HAD to get a line into me to give me glucose by IV. Then they discharged me.
I was still having the headaches on Saturday, so I went to a different ER specializing in this sort of thing to get checked out.
I saw my PCP on Monday (yesterday) and he prescribed a muscle relaxer to try to alleviate some of the pain.

Okay, back to the "regular" stuff. (Ha!)
I did go back to the dentist but he did not lance the gland because of the trauma to my head. I am on Amoxicillin and have to go back in a week to see what the progress is and hopefully get it taken care of at that point.
During my appointment with my PCP, he agreed that I should be tested for MRSA, but did not do the test because he had to have the visit "only accident related" Ummm.... okay.
He also did not like the fact that the renal specialist wants me to try coming off of the Diovan and teh Actos to see if helps lessen the edema. Apparently both drugs cause edema. The timing does not match with when I swelled up, but she wants to be sure that they are not making matters worse. She called this morning about coming off of them and I am going to go with the opinion of the specialist right about now. I am not hypertensive, and I understand that some blood pressure meds are used to help prevent diabetic kidney problems, but this is a kidney specialist telling me to come off of it, so I am going to try to have a bit of health in that fact.

I went to have an abdominal MRI yesterday, to follow-up on the one I had in July. That was an event and a half. It took about 8 sticks from 3 people to get blood from me, and then when they got the blood, they didn't start the IV line. So it took about 6 more pokes from 2 more people to get the line into a very odd spot on my left arm. I was then told I'd be going in in 7 minutes. THEN I was told that the blood test was not back because the blood machine was broken and it would be at least another hour. I started crying and said that I can't go through this again, because it had already been too long and painful of a day. Luckily they decided that the results they had from a few months ago were good enough and they sent me in. It was difficult in my swollen and banged-up state, but I got through it. Hopefully I will get the results sent to me fairly quickly.

Sunday, April 5, 2009

And so it goes...

I went to the renal specialist at the major hospital last Monday.
It was a VERY long appointment. She did not do much, physically, but she did a lot of writing and listening, which is more than I can say for many doctors.
She noticed what she called a "yellow spot" under my tongue and said that I should have it checked out by my dentist.
I am supposed to do a 24 hour urine, but am supposed to wait to do it til she calls.
I go back to see her the end of the first week in May.
The next day, I went to my PCP and he told me that I needed to "get control" when I started crying a tiny bit about the whole confusing mess, and when I said "That's the problem, I don't HAVE control" he told me that I am "too emotional". What a load of crap.
He basically made it clear that he doesn't know what is going on, and he doesn't care to find out. I brought up the MRI of my liver again, that needs to be re-done, and he said he'd write the order, but no one has called.
I did go to the dentist and he said it is some sort of gland that is occluded and I need to put hot packs on it and hope that it will take care of it, and I need to go back in a week to get it checked. If it isn't gone, then he will lance it.

Sunday, March 29, 2009

Yo-yo-ing again.

It seems to be the favourite game of the medical profession.
To use me as a yo yo and not give me any answers at all.

I had laser eye surgery on my left eye on Wednesday. They gave me percocet before the procedure this time to lessen the pain during the procedure, and the doctor did not wipe out the gel from my eye afterward to avoid me getting another corneal abrasion. I was also given a prescription for Acular just as a precautionary measure. I should be getting a phone call from the office about setting up one more surgery for the right eye, and then I will have to have an office visit because he is not sure if they will be able to treat 100% of the vessels due to the fact that I have cataratcs. I've had cataracts for over 10 years, mind you, and they do not affect my vision, according to the doctor, but it affects the laser's ability to get to the blood vessels, I guess, and I am assuming that is what has to be disgussed.

On Thursday, I had a regular gyn appointment and my doctor was shocked at my weight gain and inability to move and at the brief synopsis of what I have been through. He said when I was there 3 times ago, I was 170lbs, when I was there in October, I was 212 (this was when this was all starting to get really, really bad- it started on May 9th, 2008 to be precise) and he had me logged as 245lbs for that day, but that was being generous. I am more like 250lbs and it is scary as all get out. He did his exam and then told me that I should go to the urgent care walk-in because they would be able to send me to someone who could help, or at least point me in the right direction. Sadly, after waiting through registration, and then waiting again to be traiged and such, I was told to "go to the ER" even though I explained that I have in fact BEEn to the ER many times and I am always told that I need to leave because I "won't die today". Well excuse me if I'd like to get this taken care of BEFORE I get to the point of being at the day where I AM there because I am about to die...

I went home. Nothing more I can do. I have a nephrology appointment with an "associate"of the "colleague" of the nephrologist I saw a couple of weeks ago who wanted me to get the "second opinion" tomorrow morning. I don't know what to expect, but I hope for the best.

I also have an appointment with my PCP on Tuesday. I don't expect much from that at all. Here's hoping though.

Tuesday, March 24, 2009

ER again.

I went to the ER again on Saturday night.
The swelling and pain got out of hand. I was up to over 250lbs and felt like my skin was about to pop off. I can't even explain to you how bad the pain was.
I was dropped off at 9pm, taken in back at around 10pm, and told them I had to go to the bathroom so could they please give me a johnny and a cup right away because I knew they would want to do a UA and I couldn't get to the bathroom without a 2nd johnny on. I also asked for a blanket because it was freezing and they didn't give me so much as a SHEET.
Come 11pm, I still had no sheet, no blanket, no johnny, no cup. I was also in a stretcher that was made for someone over 6 feet tall. It was very difficult to get on and off of even with the step stool (the one of which they gave me didn't have the handle bar thing).
I hobbled over to the curtain and said excuse me about 3-5 times and finally someone noticed me and I asked about the johnny, cup, and blankets again and said that it was urgent and that I'd been waiting over an hour already, two if you count the time in the first waiting room. A page was made.

At 11:30pm, I, after sitting on the backless, rolly chair since the initial request because of the height of the stretcher, hobbled over to the curtain again. I said "excuse me" 3 more times and then I said "Hey, excuse me" and then I yelled "HI!" and the girl who had been twiddling her thumbs 3 feet from me and heard everything I said from the first "excuse me" said "Yeah?" and so I said "Johnny. Cup. Now." and she said "Well!" and I said "I've been waiting a long time, ts not like I'm rushing you on the doctor thing, I'm just asking to pee and you've made me wait two hours!" and some other girl came in and asked what was wrong and I told her and she got me set up and I went and came back and asked for blankets again, and got one.

Then I had a student come in, probably around 1am, and talk to me, maybe 1:30, and the nurse started an IV line and got blood after sticking me 3 times. She stuck me a total of about 6 times throughout the night. It was not fun. I had an EKG and a chest x-ray, which I am told were normal. The student measured my ankles.

They left and pretty much left me there listening to the vomiting, screaming, possible-MRSA patient in the curtain next door. Said patient's son kept poking his head in and looking at me, which was creepy enough as it is... and then kepy backing up enough to bump me through the curtain. Talk about scary.

My boyfriend arrived at around 4:30am and the lady in the next curtain, who I'd been putting up with for a couple of hours already, started screaming more and saying that she was going to scream more and more and "I don't care" and at that point, I said "I do" and her son SCREAMED "Shut the fuck up!" so I yelled back "Excuse me but I didn't do anything to you, that was fucking unnecessary!" and of course THEN I get some attention. They came in and said "We've got a very sick woman over here" and I said "I understand that and that's why I have been so patient with her noise and dramatics, but that was unnecessary. I didn't do anything to them." and they moved me to another, single room, with a TV.

So then I had my boyfriend go and remind them that I am a diabetic and hadn't had ANYTHING to eat or drink at ALL for over 13 hours and could they please fix that. They got me a box lunch and then the nurse came in and started putting something into my up-until-now empty IV line. I asked what it was and she said "pain medicine" and started asking me about allergies. (Mind you, she'd already started administering the drug) I told her and asked again "What IS that?" and she said "Pain medicine. I just told you, did you forget already?" and I said "No, I mean what is it called?" and she said "Oh. Dilaudid." and THEN she checked to make sure I wasn't driving... and then a few seconds later I felt really hot and dizzy and my heart felt like it was goinbg to pop out and I said "Oh my god oh my god what the heck?"and then I needed to lay down more than I was, and then I pretty much was knocked out, and less than 15 minutes later, I was told that even though they admit that I was even MORE swollen than when I came in, that since I wasn't going to die right then and there, I had to leave right then and there.

They told me to follow-up with my PCP, and I called him and I have an appointment for noon on Tuesday. Great. A whole week. More than a week after the ER visit. WHat the hell am I supposed to do? I have a gyn appointment on Thursday. I swear if he thinks I should be admitted, I'm just going to have him do it.

The ER refused to give me copies of my test results. I did officially request them, but they said I have to go through the records department. I know that is a load of crap because I have gotten the results before. They just gave me a bunch of letters and numbers in paragraph form which I am about to try to decipher.

Friday, March 20, 2009

I am so confused.

As previously noted, the allergist had his secretary call to cancel my appointment for today, even though I bent over backwards to make sure he had everything he "needs" after he threw me out without running the tests LAST WEEK when he was supposed to do them.

I showed up today and simply greeted the secretary politely and quietly and said that I wanted all of the records that I had brought in returned to me right then and there, and also the records of the tests he had done, since he had outright refused to tell me the results when they came in while I was in the office a week ago. (He actually claimed that they were not there, but I know that they were because my PCP said they were and teh secretary told me that those were what she brought in while I was in there.)

She said that she was told that all of the results were "normal" (mind you, I had to wait for these records to be faxed over because supposedly when they arrive (even though I had requested them the week before- copies for myself, that is) the doctor scans them into a computer and shreds the paper. Okay, except why didn't he just mail me the paper copy since I wanted them anyway?

Anyway, the results show a few flags for abnormality:
White Blood Count 11.1 Normal is 4.0-11.0 so that is not TOO bad and is certainly lower than I have been... but it is still flagged.
MPV is flagged because it is 12.2 and normal is 9.6-12.0, Carbon Dioxide is 32, normal is 20-31.
Total Bilirubin is 0.2 and normal is 0.3-1.2

Three things that stand out as BIG TIME NOT NORMAL are:
1~ Complement 3, Serum- 169- normal is 79-152
2~ My sedimentation rate is 47, and normal is 0-20.
3~ Anti Nuclear Antibody test was POSITIVE.
These are all a pretty big deal, from what I gather, and not only was I not contacted with the information, I was outright lied to in being told it was not there AND I was refused treatment due to a lack of paperwork that had nothing to do with the tests that (still) need to be done.

Now, moving on to the kidney doctor, I went on March 11th for an appointment, and the doctor said to come off of the Bumex. She said (in front of my mother) that if I was on diuretics that I "would wind up on dialysis and die" so I need to stop immediately. I'd already taken the Bumex for the day, so I stopped the next day. She also said that she wants me to see a colleague of hers at a major hospital and that it is urgent that I do so, but that I need to get some testing done, so she took blood and urine tests and said to come back in a week.

My WBC was 11.3- normal according to this one is 10.3- either way, still high.
Osmolality urine listed at 362 with normal being 500-800.

Now, she didn't mention anything about this to me, she just handed me my results after a very brief appointment in which she poked my ankles a little (without taking off my shoes or socks) and noted that it put me in agony, she noted that I gained weight and swelling while off the diuretic and suggested I go back on one, to which my boyfriend replied "but won't she wind up on dialysis and die from that?" and she said "Well that is why I really don't want her on them.."
but she just said she did... but now she doesn't... but she does... but she won't give me a prescription, and so I remain on nothing.

She had her secretary give me the number for her colleague and I called to try to make an appointment and was told that I couldn't have an appointment til May. I explained that my doctor considered this urgent due to the extremity of the situation and I really couldn't wait that long and that I have records and such and was not even allowed to take the May appointment as a holding spot for just in case, I was told to have the records faxed. I called my nephrologists' office and told them what was going on, I was told that they would call over and get things straightened out and call me back, but of course, I did not get a call and now it is 9pm on a Friday and I will have to wait til Monday.

Tuesday, March 17, 2009


So my phone rang at around 11:15 this morning.
It was the secretary from the allergist's office, calling to let me know that I can start taking the Zyrtec again (which I stopped again yesterday so that I could get the "scratch test" on Friday) because they don't have the records from my hospital stay in January (which was referred to as an "ER visit") which my boyfriend and I went to my PCP's office to pick up yesterday, as we were instructed on Friday after we got every single other record over from office-to-office when they should not have been needed any way....because they won't do the test without the record.
Now, when we went to pick up the records yesterday, we were told that they were not ready but were being faxed YESTERDAY, DEFINITELY because my PCP is apparently out of town for 10 days now.
Now they say that they can't do the test without the records from that "ER visit" (yet they are supposed to be testing me to see what, if anything, I am allergic to, so really they should be able to do that even if he was the first doc I'd ever been to...)

I immediately called my PCP's office, since the allergist's secretary did tell me that the allergist and my PCP had JUST spoken to one another and I was told he was I asked if he was on call, and he was, but they refused to take a message, so I will call and try to get him paged for an "emergency" tomorrow when they have forgotten my voice. I need to find out what is wrong.

I will still show up for my now-canceled appointment though. I will show up and I will demand my records, because that bitch allergist still hasn't told me my results and I have a right to them and I will take them somewhere else to have them deciphered.

I am weighing in at nearly 250lbs now and I can barely move. Getting around is getting harder and harder by the day, so I really need to stop being jerked around and find some answers.

It really shouldn't be my job to be doing all of this work.

Friday, March 13, 2009

I am dumbfounded right now.

I believe I have kept my language fairly clean in this so far, but I am absolutely livid right now, so that is out the window. Please pardon my expletives, thank you.
I was supposed to have the "scratch tests" done today at the allergists' office.
My boyfriend and I got there at 8:45am for my 9am appointment. Got called in around 9:33am.

The arrogant, condescending prick didn't do any testing because I didn't have any records with me. (He didn't tell me he needed records to do testing)
I asked what the results of the blood work (taken a week ago) and he said it wasn't ready and I said it was taken a week ago what were the results please and the secretary came in and handed him something and he said it takes 2 weeks for blood to come back and I know what they took and aside from one test I've never had (venom test of some sort) everything else was the same shit they always run so it'd be back in 48 hours or so.... oh yeah and PCP had it yesterday, so I that's another way I know he was lying out of his ass.

We kept saying he can do the test and I could bring the records next week, I hadn't been able to do anything because I'd had so much going on and he hadn't told me he needed them for the test and just do the test please because you made me stop taking my allergy meds a week ago and I'm itchy all over and suffering a lot.
He treated me like complete shit and told me to reschedule after I brought my records in.

So we left, we were out the door at 9:40am and I was spouting some cusswords on my way out of the waiting room, (I believe my exact words were "stupid cocksucking motherfucking piece of shit motherfucker" I was very angry and in pain, itchy and scared) legs shaking, barely able to walk and I said to my boyfriend "sorry honey, but we're going to PCP's office RIGHT THE FUCK NOW okay?" and he said "Okay" and when we got there the secretary/nurse knew something was wrong because I was panicked, crying and shaking and she got the story and she made copies of everything from May through yesterday except the inpatient records from January which she said I could pick up on Monday.

Now, we walked back into the allergist's office at 10:18am with those records, but he was somehow on a conference call and leaving for DC in 10 minutes so I have to go back NEXT Friday at 8:30am for the testing, without being on Zyrtec, which I just took because the secretary said I could take it for the weekend and then stop again and that after that if it got really bad I could take regular Sudafed but not allergy Sudafed. Oh, and also that thing she had handed the doctor- it was my complete blood results.

Happy Friday the 13th, huh? I hope this Zyrtec works soon. I need to lay down.

Thursday, March 12, 2009


Okay, so I guess I should do a medicine update since it has changed a bit.

I went off the Maxzide and was put back on Lasix then I was taken off of those and but on Bumex after I'd been given Lasix by IV several times a day while I was in the hospital, but not discharged with anything...

Now the kidney doctor does not want me on any diuretics because she says that she has seen too may patients start on them as young as me and wind up n dialysis and doe because of it, so she sent me for the aforementioned tests and x-rays and wants me to return next week and she wants me to go see one of her colleagues and a major hospital.

My PCP seems a little miffed because he thinks I will be upset with him when I swell up again and have no diuretic to counteract it- but they aren't DOING anything, so what it the point? I mean, I was on the Bumex a couple of weeks ago when I went to the ER after gaining 10 pounds in 2 hours, so really... I'm mad that I am swollen, and scared... but I swelled up on May 9th, 2008, out of the blue before I ever met this doctor.
The PCP did say that I had a positive ANA a few times so that I might have lupus, but I have no idea.. I have heard that before. I don't know what to think. I need to ask around and find out what I need to do to get an answer on that one.

Tomorrow, I am having the scratch tests at the allergist office, and hopefully after that, I will be able to take my Zyrtec, because the last time I took it was last Friday morning and I am itchy as anything night now!!!

Anyway, the current meds:

Humalog 75/25 (though I have lowered the dosage)
Zyrtec (except for this week because of the allergy test)
Albuterol (as needed)
Ranitadine (as needed)

I think that is everything.

Getting difficult to keep up

It is very difficult to type. I do the best I can, but so much happens every day, that I just don't have the time or the energy to keep up with everything.
A couple of weeks ago, when I swelled up to 244lbs, they told me in the ER that I should be weighing myself daily on a digital scale.
Someone sent me a digital scale and I have been doing just that, and it is very depressing.
I need some diabetic socks because everything else squeezes the life out of me. My skin feels like it is going to explode off of my skin.
I need help putting my socks on and off and they HURT. That's just scratching the surface, too.
I saw an allergist last Friday and he told me to stop taking my Zyrtec for a week and come back this Friday (tomorrow) for allergy testing which will take a couple of ours.
I saw the kidney specialist yesterday and she took blood and urine and told me to come of the diuretic (which was just switched to Bumex less than a month ago) because she doesn't want me to wind up on dialysis... she sent me for a chest x-ray and wants me to come in again next week to follow-up.
I have stopped taking my HUmalog in the morning because I have had some very bad low evening bloodsugars, so I am just taking the Lantus and Actos for diabetes-stuffs and then I do the Humalog in the evening. Seems to be working much better.
Other than that, I have no idea.
I will update again when I am able.

Wednesday, March 4, 2009


As previously mentioned, I had eye surgery on New Year's Eve.
I had a black spot in the middle of my left eye and it turned out it was from an anurysm that burst.
I wound up having laser surgery on my right eye and an invasive surgery on my left eye... ouch.... needles.... 3 of them... in my left eye. NOT FUN.
I had more laser done to the left shortly thereafter, and then the right was postponed due to the hospitalization in January. I had the right done this past Thursday and there was a minor complication (which did not seem so minor at the time) an abrasion from the lens which caused a lot of pain and leaking.... EW.
Drops (acular) took care of that, thankfully.
I swelled up during dinner on Monday night (went from 235lbs, which was already an increase- to 244lbs, in 2 hours) so I went to the ER and they told me that I was fine so they sent me home.
I am at a loss.
I am scheduled to see an allergist on Friday, my PCP on Thursday, and have more laser on the left on the 25th. Not to mention that I have to go see a headshrinker in a week to prove that I have medical issues to the Social Security Administration since apparently no doctors have sent my records even though I spent hours signing release forms for about 20 different locations..

Tuesday, February 17, 2009

Alrighty then....

I guess back-tracking isn't really going to work with this. if anyone happens to read this and has any questions, by all means, feel free to ask.
On Monday, the 19th of January, I had an upset stomach. I didn't think much of it, as I had a hot dog with many fixins' on it from a hot dog chain the night before and figured that my body just can't handle that sort of thing any more.
I went out of state with my boyfriend in the morning, and by the late evening, I was freezing and could not get warm. I was also shaking. I tried layering up, I tried having some juice and cheese, figuring it was my blood sugar, but I just kept shaking and no one else was cold.
My temperature was taken and it was 100.2 so I took some generic NyQuil type stuff which contained a fever-reducer. After about an hour to an hour and a half, my fever had risen to 102.
We figured that since I have Medicare and MassHealth, that I should be seen at a MA hospital instead of one out of state, so we went to a hospital in MA, but far away from any that I have ever been to.
Upon arrival, I was taken to the "fast track" section of the ER. This was about 10:30pm and I was given Tylenol and poked so many times with a needle it was insane... for them to try to get blood. They ignored the fact that I told them I am a hard stick and they needed to get a specialist. They ignored me when I said "STOP FISHING, IT HURTS TOO MUCH!" and instead left the needle in while they went to find someone else.... oh the bruises I had from that...
Anyway, finally they struck a nerve and I screamed in pain and I cried because I couldn't take it any more. They took it out and gave me some pain medicine and then sent someone over to tell me that I had to leave because they were closing... while I was in the bathroom...
The ER is closing? What?! Apparently this "fast track" thing closed at midnight or so, and so instead of having my stretcher and a curtain by myself, I got shoved (and I DO mean shoved, and slammed, multiple times) up against the wall, my IV line caught in heaven knows what... with 3 other people in the room in possibly very contagious condition. Forget the fact that we had no idea with my fever, and diarrhea, we had no idea if I was contagious or not. It was a bad scene. I saw doctors for a total of MAYBE five minutes between 10:30pm and 6:30am when they came in and informed me that they were going to admit me. They'd had me on a "folly bag" for a while (I was not expelling any urine so they were wanting to monitor it. It was unsuccessful so finally they took the damn thing out) but that is about it- aside from the contrast I had to drink for the CT scan on my chest, they gave me NOTHING to drink in that whole time I was there.
Admit me. They hadn't even talked to me and they had grounds to admit me?!
Right. Diabetes. Not connected to what was going on AT ALL, but that was their rationalization for keeping me.
So at around 2pm or so, I was finally brought up to my room.
I did not see any doctors that day, and even though I hadn't had any insulin since Monday morning and it was now Tuesday afternoon, they refused to give me any. They continued to refuse until Wednesday NIGHT. Insane. They didn't do anything except have me in quarantine. It was scary.
When the doctors finally came in, they said that they were not going to give me any antibiotics until the stool cultures were back, because they wanted to see whether or not it would be something that would respond to them. After a few days, they said that antibiotics would not work.
The first day or so, despite not being able to eat, and constant diarrhea, I swelled up to the tune of 15lbs or so. I had to take my rings off and my boyfriend had to take my necklace off because it was choking me. They decided to weigh me twice a day and give me Lasix by iV every 8 hours. It took the extra swelling off, but sadly it did nothing for the swelling that started this whole medical mystery and I have swelled up a LOT more since my discharge...
I was about to be discharged on Thursday when my oxygen level dropped unexpectedly and my lungs filled up with fluid. An echocardiogram was ordered "STAT" for Friday... and I got it on Monday afternoon.
All weekend I was absoulutely miserable. I couldn't breathe, I was in so much pain. I had breathing treatments every few hours and it didn't do much for me at all.
I was not allowed to shower, nor did anyone give me a sponge bath for the first 5 days I was there. I was finally allowed to shower on Thursday and I had a terrible, terrible rash under my breasts. Very, very painful. It remained until my discharge from the hospital and they nothing.
I brought it up with my primary care doc when I walked in after calling him for a week to get a follow-up to no avail. (I just walked in and refused to leave without being seen) He put me on Doxycycline and a cream, treating me for a possible staph infection. It still isn't completely gone, so he just put me on a bigger dose of Doxycycline and if it doesn't clear up then I am supposed to go see a dermatologist.
I got ZERO answers at that hospital I was at. I left feeling almost worse than when I went in.
I am still swollen and still in pain and still wondering what the heck caused that terrible little side trip and massive fever...
Obviously this doesn't account for everything, and I don't think I have even touched on the eye surgeries I had unexpectedly on new year's eve... and after.
So there will be more.

Update coming ASAP

I have been meaning to update for a while now.
I have been so run down after winding up on the hospital, trying to get things in some form of order... and I am still working on that.
I've had a partial post saved as a draft for some time now and I am going to try to get back to that very soon.

Tuesday, January 27, 2009


Okay, so I haven't been able to continue with my updates recently because I was actually admitted to a hospital somewhat out-of-my-way unexpectedly and have been there for over a week.
I am glad to be out now, and hope to update again soon.

Thursday, January 15, 2009


So continuing on...
When this all began, I went to one ER and was told that it was in my head, given an ativan and sent on my way. Two days later, I was taken to a different ER, more blood was taken and oxygen was given but I was told that I was not going to die that very night, so I had to go.
I was seen at a hematologist's office, but was seen only by a nurse practitioner, never actually seen by the hematologist. Many blood tests were done.
Many outside tests were ordered:
Stress echo- I was told this was normal, even though I felt like I was going to die.
Abdominal CT- normal
Bilateral leg ultrasound- normal
Abdominal MRI- a hepatic adenoma was found- a (at that time) benign) tumor that was presumably caused by LoEstrin24. This was told to me on July 28th, 2008 and I was told to come off of the pill immediately and that the MRI would be repeated after a brief time off of the hormones. As of this date, I can't get anyone to order the repeat of the MRI.
Pelvic Ultrasound- normal
The nurse practitioner put me on Lisinopril.

I have seen my gyn and been cleared of anything on his end.
My first "new" Primary Care Physician told me that he would not be my doctor because I have too many previous diagnosis. This was before I even swelled up. I got a new PCP and he ran a bunch of blood tests and sent me to a kidney specialist.
I had a terrible cough that would not go away, and the PCP determined (after months of antibiotics) that it was the Lisinopril causing an upper respiratory infection. I was taken off of it and eventually, the cough got a bit better. I still have left-over effects from it.

The kidney specialist first said (without doing ANYTHING, I kid you not) that there is nothing wrong and sent me home. Then she called and said that there was protein in a previous urine (not done in her office, because again, she did NOTHING) so I needed to come back to do a 24 hour urine. I did that, and she decided that being on Lasix and Triemterene was dehydrating me, so I needed to come off of it. She also said that my potassium was low.

My PCP put me back on the Triemterene, but on a lower level- Maxzide, which I am on now. I was off and on the Lasix a couple of times too. Nothing has actually shown any results, diuretic-wise though.

I have gotten weaker and weaker and my mobility has gotten severey impaired. I still have no answers. I will write more later. I am too tired.

Tuesday, January 13, 2009


I guess I should start with the basics.
I am looking for answers in a world where I can not seem to find any.
It seems that I have too many medical issues at once to get anyone to take me seriously.
I am a 29 year old female.
I h ave Type I (juvenile onset) diabetes and have been insulin dependent since childhood.
The word "brittle" has been used to describe me, and I have struggled with controlling my sugars, but I do the best that I can. My last GH A1c was 10.2, which although still high, was an improvement from my "normal" range of 13-14.
I was improving.
I have fibromyalgia, which was diagnosed in 1999. It has been treated only with a very small dose of Topamax for the past three or four years.
I have asthma, which tends to be triggered by extreme heat or cold, humidity, and wind.
I have hypothyroidism.
My cholesterol is apparently borderline high. I was on Lipitor for a while several years ago, but got debilitating back pain from it and was taken off of it.
I currently take:
Lantus (insulin)
Humalog 75/25 (insulin)
Albuterol as needed
Ranitidine as needed

In early May, I started swelling up for no known reason. I was walking around all day long in a size 14 jeans. I came home and was going to watch movies with my boyfriend. It was a rainy day, and we were staying in, so I changed into my pajamas. I went to put my feet up on his lap, and we both realized very quickly that something was wrong. I was swollen like a balloon.

When we went to lay down, he noted that my breathing sounded funny. He said it sounded like "pop rocks" or like "wringing out a wet sponge" and the swelling was just terrible.
I went to put my jeans back on. No luck. I tried a size larger and so forth... got to the one pair of size 18s (with a lot of stretch to them- more like a 20) that I had and just barely got them on. When we finally got to the hospital, I weighed in at 30lbs heavier than I had been that morning.
I was hyperventilating pretty badly and they didn't even give me oxygen. They took some blood, gave me an ativan, told me it was IN MY HEAD and sent us on our way.

2 days later, I was still no better, and about 20lbs heavier still. We went to a different hospital. They gave me oxygen and took more blood and said they didn't know what was wrong, but mentioned that the previous hospital had mentioned that I have lupus, which they certainly didn't tell ME... so I freaked out. Then they basically said since I wasn't going to die that very night (that is what they said, actually) then there was nothing they could do and I had to go.
No answers as to why I put on 30lbs in 3 hours and 50lbs in 2 days. Great.

I went to a hematologist who took a lot of blood, but got no answers. Got a new PCP, who sent me to a kidney specialist, who told me that my kidneys are fine. I got put on Lasix and Maxzide and then taken off of the Lasix and put back on then taken off again being told that it was dehydrating me.

I got debilitating back pain right before Christmas. Out of the clear blue sky. No one could give me answers. Finally, I had the idea to call my PHARMACY and have them run a check on all of my meds. What do you know? Zocor, which I was on for my not-all-that-high-cholesterol, is in the same family as Lipitor was. We don't know for certain that it was the culprit, but I stopped taking it, and eventually, the back pain greatly lessened. Hrmmph.

There is more, but I need to stop for now.
If you have any input at all, please feel free to e-mail me and/or comment here.
If you know who I am, please do not use my name.
I am keeping this a nameless blog.
Thank you.