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.

Breathless.

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.

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.

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.

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.

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.