Witty title, or somesuch...

I don't even know... I always feel like I have so much to write and so little time, or so much time to write, but so  little energy to do so.  Such is the case with many of the tasks that I always have every intention of actually tackling....

Right now, it is after 3:30am and I am just starting to type. Why? I have no idea. I will probably be drowsy again in about 30 seconds, but i have to try. I really have not updated and I am really not even sure what the heck I should start and/or end with.

I am still swollen.  Yes. All these years later. I have lost a fair amount of the edema and am working on losing more of it, as well as losing fat, but it is still there, and nobody ever did find out what caused me to gain 100lbs in 3 days... they probably never will, since they stopped trying without ever starting, it seems. Who knows?

So let's see....
Basic run-down/catch-up/update on the diagnosis and meds, I guess?

I have:
Type 1 Diabetes, hypothyroidism, fibromyalgia, PTSD, asthma, sleep apnea, unexplained edema, kidney disease, gastroparesis, IBS, GERD, vitamin D deficiency, anemia, migraines, my right sesamoid is shattered, I have carpal tunnel/trigger fingers/trigger thumbs in both hands, I have stones in my salivary glands/ducts and scarring on my vocal cords. I will be having surgery on the left side salivary duct in a couple of weeks and I am petrified. I have been having debilitating headaches for a few months and I have no idea why. So bad that they have made me fall down on more than one occasion. I was treated for a sinus infection, and while I have a little less pressure, I am still having nearly constant, very bad, headaches, and it is quite frightening.

I am on Novolog through the insulin pump now (the One Touch Ping) I have been on it for about a year and a half now and my A1c is 7.1, which is absolutely amazing! I have  Insulin pens for backup in case of pump malfunction/failure.
Other meds: levoxyl, diovan, zyrtec, ranitadine, omeprazole, vitamin D, ferrous sulfate, phentermine, topamax, bumex, junelle fe, albuterol.... I think that is all, but I may be forgetting something.

I have been getting a fair amount of exercise over the past several months, mainly from doing a LOT of walking. I mean a LOT. Oddly, though, I GAINED some weight, which is both frustrating and frightening.... not really sure what to make of it.

I have also had a couple of completely NOT ROUTINE hospital stints in very recent history, and those ones REALLY threw me for a loop. I don't know if I was slipped something or what, but it wound up with me being unconscious for MANY hours, and having NO recollection of how I got to the hospital or out of all of my clothing and into a johnny and apparently SOMETHING else must have happened because I wound up with a GIANT bruise under my arm which, as it fades, is now revealing a giant CUT.... the plot thickens....  but I don't know. A few days later I was in the hospital with food poisoning, which included a lot of blood from my nose, and massive belly pain. I had a really great person with me through all of this, and now that person is scared of me, and that kills me.

I honestly don't even know how to function right now.

 

So much happening, and so little time/strength to write!

I don't even know where to begin anymore. I guess I can start back up sort of where I left off...
The ENT doc in the ER sent me to a specialist. (or rather, told me to go to one, so I found one, and I did) The specialist agreed that Sjogren's Syndrome was a possibility and that my endocrinologist should order tests.
She did. I do have a positive ANA (Anti-Nuclear Antibody), which had been shown before, but whatever. She says its a "low- positive" or something like that, but she talked to my kidney doc, and he told her to run the test for the Sjogren's antibody. After waiting anxiously for over a month, we found out that I do NOT have said antibody, which is great on one hand, but on the other hand, it kind of puts us back at square one.

The throat doc ordered a neck CT with contrast, and also a vocal therapy evaluation. My next appointment with him was right after my vocal therapy evaluation (at which the vocal therapist said that she would be recommending vocal therapy because I have scarring on my vocal chords) The throat doc said that they found that I have stones in my salivary gland. IN ALL OF MY SALIVARY GLANDS. I didn't even know this was a thing. He said to go see another particular doctor as soon as possible, and he said that only a few people in the world do this surgery, and she is one of them. That was a scary thought. I saw her, and she said that the stone on the left is HUGE and that it is in the duct, completely blocking up the gland. She said that the surgery would be hard, and that she couldn't book me then because despite having been on high dose liquid antibiotics for 10 days, it was massively infected, so she prescribed more.

I went back today, and she said that it is much less swollen, so that is good, but the closest surgery date available is in the middle of December,  so judging by how often this thing has been causing over the past however long its been, I am in for a very long couple of months. Ugh. I am scared out of my mind.

I can not even BEGIN to explain all of the GI stuff, eye stuff, and migraines that are going on at the same time as this. I can't try to tell you why I have gained 15 or so pounds in the past month despite the fact that I am eating relatively well, and exercising a LOT, but I have. I don't get it, and it scares the living daylights out if me. I have been swelling up again too. Nobody can tell me what the heck is going on.
I will try to update more later, but I am freezing, so I need to go try to warm up.

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.

Moving right along...

Still having eye issues. Doing the best I can to make it through the production I am in at the moment, and thankful for some amazing people helping to make it alright.

My rape crisis counselor is trying to help me to find some longer-term counseling, but at this point, I am on waiting lists. We shall see.

I had an appointment with the diabetes nurse, and she informed me that I have lost 15lbs since I last saw her in January. I still have a long way to go and a lot of issues to deal with, but at least its something.

I meet with a dietitian and a nutritionist on Monday and have no idea what to expect. I meet with a hematologist next week, and I am very nervous.

I am so drained, and in so much pain. I just want it to stop.

Catching up a bit

I went to meet with a nutritionist on Thursday. He had me in for a pretty big test (full body bone density test) immediately, but then told me that it "never happened" because my insurance won't cover it. He said that he can tell my body fat percentage by my bone density, but it came back as 51%. Now, I don't know what the "normal" percentage is, but I am thinking that in my case, this test is not all that accurate. I am NOT saying that I am not fat, what I am saying is that this is not ALL fat. 100lbs in about 3 days, remember. 100lbs of fluid. Anyway, I don't really know what to think right now, but I am trying to keep an open mind becuase he seems like he wants to know what is going on and help me. He was not given any medical history on me, so I stopped him and filled him in a bit before anything else. I have an appointment with him in a month, and he asked "How much do you think you can lose in a month?" and I said "I really don't know, I could lose 20 in a week and gain 30 in an hour- there is no rhyme or reason to any of this." We shall see, I guess. (I think my weigh-in at that appointment was 244lbs.)


Later that day, I got a call DIRECTLY from my endocrinologist regarding some blood work that "should have been flagged a couple of weeks ago" and got some good advice for the follow-up with my PCP. What she said was that my white count is high. It has been consistently high for a while. She understands why some doctors would blow this off as being nothing to worry, but given the circumstances, she feels it needs to be investigated. She also said that I should not discuss my diabetes with my PCP at my appointment, because I need to focus on why I was hospitalized and such. She said to bring up the white count, and that we'd deal with moving forward with diabetes things the next time I see her (which is relatively soon).

Also later that day, I was at a rehearsal and I was overcome with extreme sharp pain again. I could not hold back the tears. It was brutal. I hadn't been taking my pain medicine (I tend to try to not take anything extra on top of the huge cocktail of stuff I am required to take..) and I didn't have any with me. Luckily, one of my friends gave me a ride home. I took pain medicine and slept for a short while before it was time to get going to see the PCP.

The PCP took blood for a potassium level check, since it had been low at the hospital. She also wants me to see a hematologist. I have to check with her and see if that will be set up through her office or if she has someone that she wants me to call.

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.

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.