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.

My eyes...

They still have spots in them.
I really don't know what to do at this point about calling the retina doc or something.
It is driving me batty, as are the headaches.

I also think I did some actual damage to both of my knees during the production I was just in, but I am scared to get those checked out. I figure on that front, I will at least give it a few days healing time and see if they actually get better. If not, the "snaps" that I heard while moving around should probably be investigated.

I am pretty sure that my speep apnea is getting worse. I haven't really used the CPAP machine recently. It is so awkward. I will probably replace the filters and try it again in the relatively near future.

I am still a human water balloon.

Sick of it all.

I am so sick of hospitals.
I had to go to the ER about my eye on Monday because I lost most of the vision in my left eye all of a sudden.
I went to see the retina specialist on Friday and wound up having laser surgery on the aforementioned eye. I also had an allergic reaction to the fluroscein contrast, which I am still dealing with.
I started having chest pains on Saturday evening, and went to the ER after much hesitation.
I was told that my liver function is low and my creatinine level is up.
The rest of the bloodwork looks good, apparently.
They did an EKG, BP, and CO2 and gave me Toradol in my vein and that was it.
Prescribed a topical for my neck (for the reaction to the contrast) and sent me home... 6 hours before the public transit started running.. and this hospital would be a 3+ hour commute on public transit. The cab driver drove 80MPH. Not helpful.

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 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.

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.

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.

Standstill?

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.

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.

Briefly...

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.

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.