I have to update this thing WAY too often.

I think I might have permanent scars because my kitties like to sit on my lap while I write, which I seem to do a lot. Eh, they mean well.
So as I said before, I met with the bariatric surgeon, and he was... not my kind of doctor, shall we say? The VERY first thing I said to him was "I am not saying I am not fat. I know I am, but I have an excessive amount of fluid that showed up very quickly out of nowhere and I am not convinced that a fat-loss surgery can help, so I need to know why this is a viable option." He went on and on about how the forms that I filled out at the info session prove that I am not a good candidate. Why? Because I spoke my mind in answering their stupid, non-specific-enough questions.
Examples:
Did/do you have overweight parents? Yes, but they weren't born that way and they aren't the ones being referred over for major surgery. This is MY life, thanks.

Please check the diets and meds on this list you have tried (followed by a list of fad-diets and drugs that have been either recalled or banned) None. I have never taken a weight loss pill or used a fad-diet. I watch what I eat, and I think the fact that I lost 155lbs and kept it off for 2 years and was continuing to lose until this fluid thing happened, proves that I did the right thing.

So yeah, stuff like that. The surgeon kept going back to me being "on the high end of morbidly obese" due to my high BMI, and I kept telling him that the BMI is bullshit because it IS NOT ALL FAT. So he asked if I had a psychiatrist, I said no, but that I had been seeking counseling on a longer-term after I just finished short-term counseling at the (semi) local rape crisis center and that I'd gladly take under advisement anyone he could suggest. To this he said "That's not my job, but I can't help you until you come to terms with the fact that you are simply morbidly obese." He told me to go back to the nutritionist that sent me to him in the first place (mentioned in previous posts) and that he would put me on drugs.
Right.
Because that will totally fix everything.
Do you know I see about a million commercials daily for new drugs being recalled, killing people, etc etc? Do you know how many of those I have been put on? It is pretty scary.
Anyway, I do what I can and am VERY active when my body lets me be.
I just finished a 4-week beginner's swing class on Wednesday. On Thursday, I am pretty sure we can count my commute as exercise, since I was wandering around blindly to find the entrance to the train station, and then I was forced to wait for half an hour for the bus in torrential downpours with no jacket and no umbrella in a rather heavy, long dress and then walk a half a mile... I think carrying that extra weight added to my workout....
Friday (yesterday) I went to a city dance party. My friend and I started it up. It was supposed to start at X time, and theer was music, but no people, so we said "screw it" and got in the middle of the street and started dancing and yelling for others to join in. 3 hours straight of non-stop dancing, then a quick bite, then I walked from the store to my friend's house, which I didn't realize was about 2 miles... then stairs... then more dancing.
Normally I wouldn't put that stuff here, but I think that it needs to be documented that I AM an active person. I am sick of these quackpot doctors blaming laziness for my weight.
I walked 6-7 miles the day I turned into a human water balloon.
I have no idea what my cholesterol is like right now. I haven't been able to afford the fish oil capsules. Insurance won't cover natural products. They will only cover the DRUGS, which almost killed me. Wonderful.

Moving right along...
I met with the retina fellow last Friday and he said he thought it was time for a vitrectomy and to follow up with my retina doc soon. I did that on... Wednesday, and he agreed. Not only that, but he said that at the same time as the vitrectomy, he would remove my cataract on the left eye, and put in an implant. Kind of scary... I went for a test in which I had to lay down, have my eyes propped open, water poured on them and left there, and then lights shined through the water. It was rather uncomfortable.
I have to go in for an Avastin injection next week, and pre-op stuff, and then the following week with me my surgery. Man, do I wish I had decent pillows and/or a comfortable couch.

Anyway, I have typed about as much as I can for now. I think that sort of sums up things as they are now.

I guess I should updte.

I had my surgery on my left eye on 12.30.09.
The doc used a different type of laser than the other ones had been, explaining that it was going to give the ability to get more pin-pointed areas.
It was way more intense, it hurt like hell, but I got through it.
I wound up having unexpected oral surgery a week later (1.5.10) because I woke up choking on a filling and a piece of my tooth, I would assume. It couldn't be saved, so I lost a molar. It took a very long time to stop bleeding, and it still hurts a bit. I go back on Tuesday to have the stitches removed and hand over my partials so that they can add the now-missing tooth to it. :(

I had an appointment with the diabetes nurse today. She said that although we aren't exactly where we want to be, that I am going a great job at keeping track of stuff, doing the right thing, and whatnot. She said that 50% of my bloodsugars are where we want them to be, which is MUCH better than they used to be.

Today, a urinalysis was submitted, and blood drawn to text electrolytes, lipids, magnesium, A1C, thyroid and basic blood count.

I hear that my echo-cardiogram shows that whatever is causing this edema is NOT heart failure. A small comfort, that. Still don't know what it IS. I mean, we know I have kidney disease, but I was told that it COULDN'T cause the level of edema I have. I can't catch a break.

Today, at my nurse appointment, my left eye started acting a little funky. By the time I was done with the lab tests, it was really taking a toll on my line of vision. I went to the ER at the hospital my retina doc is at, and saw the fellow. I was informed that there was no new bleeding (good) and that this was scar tissue from the surgeries and it just moved (not great) and I'd just kind of have to learn to "deal with it" or something. Well, doing the best I can- it isn't easy, but I am trying to stay positive at least a little bit.

I am so worn out. So tired. I need answers, not more walls to climb.

Quickly...

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.

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.

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.

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.

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.

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.

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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



PMHx:

- 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
syndrome



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
sediment.



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.



Sincerely,



Xxxxx Xxxxxxxx, M.D.
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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.

Pre-op

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.

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.

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.

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.

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.

More

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.

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.

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.