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.
Friday, November 29, 2013
Wednesday, October 23, 2013
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.
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.
Tuesday, July 23, 2013
Here I am again...
A lot has happened.
There is still a lot that I haven't processed.
I have lost a fair amount of weight, so that is promising.
Most of that comes from walking. I walk a lot. The past few weeks we have had weather consistently abobe 93 degrees F, so I haven't walked QUITE as much, but still as much as I can.
Feel still hurt like hell, but they function, for the most part, so that's good.
The doc who says I need surgery for my shattered sesamoid has not brought it up again, and at this point, I have dealt with the pain for so long that I wonder if it may be best to just "grin and bear it" for now.
My retinas are stable! Just had a check up about a week ago!
Kidneys are improving! Doc walked in a couple of weeks ago and said "What the heck have you been doing!? You're healing! This is great!" because my Creatinine went from 1.7 to 1.4 or something like that.
Diabetes is improving. Got the A1c to and stabled at 7.3, which is amazing.
Then my pump malfunctioned, and I wound up in diabetic keto acidosis (DKA), dehydrated, and with a creatinine level of 2.1 Luckily, I didn't lose consciousness at all, and I made it to the hospital as the doc told me to, and outside of a little issue with the IV, I was able to be treated and released in not TOO long of a timespan. The issue with the IV though- that was messy. I was laughing about it though. That poor nurse! It TOTALLY wasn't her fault!
I am a hard stick to begin with- that is putting it mildly. When severely dehydrated? Pretty dang close to impossible. This woman stuck me so many times, and she kept apologizing and I kept telling her not to worry about it, I am a hard stick, yadda yadda and just remaining as calm as possible. my thing is that I am basically fine- as long as I don't LOOK.
Well, all of a sudden, I feel a little drop, and the nurse says "Oh, you're a bleeder, huh?" and I said "Huh?" and turned around....OOPS! When I turned around, I saw this:
Yup. It is a lot more than it looks like. This was taken after I'd been cleaned up a bit, but you get the basic idea. The blood took up almost half of my shorts. It went through to my underwear and my skin, and around to the backside. Apparently, they got a new type of tubing in the ED, and they had a tendency for the caps to pop off, which this one did, resulting in lots of blood. They went and got me some surgery scrubs so I didn't have to lie there/leave covered in blood.
That poor woman was beside herself though. I told her over and over that it was okay and that "shit happens and clothing can be washed" so not to worry about it. I do hope that eventually, it sank in.
So I was without my pump for 4 days until the replacement arrived, and taking inhections never got back to "working" in that time frame, so my sugars were a bit high...but manageable, thankfully. I have been back on the pump for 2 weeks or so now and everything is basically back to normal.
Unless you count the debilitating ear, nose, and throat pain that I have been having, and is getting progressively worse over the past month or two. Right now, I am on a soft food/primarily liquid diet because I can not swallow very much/very well. It is very painful, and swollen.
The ENT doc thinks I may have Sjorgren's Syndrome, so I need to have some tests done.
The also said that acid reflux and TMJ are making my pain worse, and that I have Proliferative Verrocous Leukoplakia, so that sounds like fun.... more tests on the not-too-distant horizon, I am sure.
I had never even HEARD of any of these things til yesterday. I am overwhelmed and scared, but hoping for the best!
There is still a lot that I haven't processed.
I have lost a fair amount of weight, so that is promising.
Most of that comes from walking. I walk a lot. The past few weeks we have had weather consistently abobe 93 degrees F, so I haven't walked QUITE as much, but still as much as I can.
Feel still hurt like hell, but they function, for the most part, so that's good.
The doc who says I need surgery for my shattered sesamoid has not brought it up again, and at this point, I have dealt with the pain for so long that I wonder if it may be best to just "grin and bear it" for now.
My retinas are stable! Just had a check up about a week ago!
Kidneys are improving! Doc walked in a couple of weeks ago and said "What the heck have you been doing!? You're healing! This is great!" because my Creatinine went from 1.7 to 1.4 or something like that.
Diabetes is improving. Got the A1c to and stabled at 7.3, which is amazing.
Then my pump malfunctioned, and I wound up in diabetic keto acidosis (DKA), dehydrated, and with a creatinine level of 2.1 Luckily, I didn't lose consciousness at all, and I made it to the hospital as the doc told me to, and outside of a little issue with the IV, I was able to be treated and released in not TOO long of a timespan. The issue with the IV though- that was messy. I was laughing about it though. That poor nurse! It TOTALLY wasn't her fault!
I am a hard stick to begin with- that is putting it mildly. When severely dehydrated? Pretty dang close to impossible. This woman stuck me so many times, and she kept apologizing and I kept telling her not to worry about it, I am a hard stick, yadda yadda and just remaining as calm as possible. my thing is that I am basically fine- as long as I don't LOOK.
Well, all of a sudden, I feel a little drop, and the nurse says "Oh, you're a bleeder, huh?" and I said "Huh?" and turned around....OOPS! When I turned around, I saw this:
That poor woman was beside herself though. I told her over and over that it was okay and that "shit happens and clothing can be washed" so not to worry about it. I do hope that eventually, it sank in.
So I was without my pump for 4 days until the replacement arrived, and taking inhections never got back to "working" in that time frame, so my sugars were a bit high...but manageable, thankfully. I have been back on the pump for 2 weeks or so now and everything is basically back to normal.
Unless you count the debilitating ear, nose, and throat pain that I have been having, and is getting progressively worse over the past month or two. Right now, I am on a soft food/primarily liquid diet because I can not swallow very much/very well. It is very painful, and swollen.
The ENT doc thinks I may have Sjorgren's Syndrome, so I need to have some tests done.
The also said that acid reflux and TMJ are making my pain worse, and that I have Proliferative Verrocous Leukoplakia, so that sounds like fun.... more tests on the not-too-distant horizon, I am sure.
I had never even HEARD of any of these things til yesterday. I am overwhelmed and scared, but hoping for the best!
Saturday, November 10, 2012
I should probably update this thing...
I'm alive. I often wish that I had just died in July.
I go through random bouts of hysterical crying and I can't explain why.
I also go through bouts of quiet crying. Again, can't explain why.
I feel like nobody REALLY wants t9o know what happened and what I am going through.
I just wish it would all stop.
I miss something that I can never get back.
It hurts so much.
I go through random bouts of hysterical crying and I can't explain why.
I also go through bouts of quiet crying. Again, can't explain why.
I feel like nobody REALLY wants t9o know what happened and what I am going through.
I just wish it would all stop.
I miss something that I can never get back.
It hurts so much.
Tuesday, September 25, 2012
I guess it has been a while again.
I'm here. I am okayish.
There has been a lot happening over the past few months and it really has me drained both physically and emotionally.
I have suffered from various sorts of losses, and I have been in a lot of pain.
I had minor surgery on my left great toe twice in a matter of 4 days, and i still have to re-dress the wound daily.
My A1C has dropped to 6.4, but I was having chronic lows, so we changed the numbers, and now I am having chronic highs, so I am going to do a basal evaluation and we will likely change the numbers again.
I am hoping to do the basal evaluation tonight.
I should go for now.
There has been a lot happening over the past few months and it really has me drained both physically and emotionally.
I have suffered from various sorts of losses, and I have been in a lot of pain.
I had minor surgery on my left great toe twice in a matter of 4 days, and i still have to re-dress the wound daily.
My A1C has dropped to 6.4, but I was having chronic lows, so we changed the numbers, and now I am having chronic highs, so I am going to do a basal evaluation and we will likely change the numbers again.
I am hoping to do the basal evaluation tonight.
I should go for now.
Wednesday, May 30, 2012
Oh, hi...
I'm still alove.
Things have been rough, but there has been good stuff too.
I have been on an insulin pump for about a month and a half or so, and my A1C had gone from 10.9 to 8.1 or something like that.
Not too shabby.
I've been tired and run down and not eating well (not eating much at all, due to lack of money) but I am doing the best that I can.
I have been walking a LOT lately, so that is good.
Anyway, just wanted to to check in. I will try to add more substance later.
Things have been rough, but there has been good stuff too.
I have been on an insulin pump for about a month and a half or so, and my A1C had gone from 10.9 to 8.1 or something like that.
Not too shabby.
I've been tired and run down and not eating well (not eating much at all, due to lack of money) but I am doing the best that I can.
I have been walking a LOT lately, so that is good.
Anyway, just wanted to to check in. I will try to add more substance later.
Sunday, March 25, 2012
SO sick of being sick.
So the previously mentioned pneumonia never really fully went away.
I am still suffering now, but definitely more mobile... probably TOO mobile right now... I think I walked at LEAST 40 miles this week, and still had a boatload of doctor appointments.
So the other night, I went to cook something in the oven for the first time since I moved in. I set it to preheat, (empty) and less than 10 minutes later, the alarm was going off. There didn't seem to be much/any smoke, but there was a definite smell, so I don't know if it was the smoke or the carbon monoxide detector.. i hope there IS a carbon monoxide detector... I went to open the windows to find that they are apparently painted shut (the kitchen ones) I went to open the middle room ones and the top of one fell down when I unlocked it and the other one seems to be the only one in the house that opens, but like ALL of them, there is some kind of fixture on it that makes it only open about 4 inches. This means that, in the event of a fire, unless I physically BREAK a window, I have ONE exit and one exit only- through the kitchen door.
Tonight, I noticed that the middle yard-facing window in my bedroom was cracked, and since it got cold again, I went to close it, and the top fell down. I can't reach high enough to get it to close all the way, and the lock seems to be busted.
I thought I was freezing all this time because of pneumonia. It may well be that I got and kept the pneumonia because the freaking windows have been open since before I moved in and I didn't know it because I was (am) so sick.
I had the thermostat turned all the way down for the past few days, but since it got cold again, I turned it on, and now the house smells.
The hose in the kitchen sink does not come out of its holster thingy, and also fills up when I try to do dishes (this happened the first time I ever turned the faucet on, so its not like I had something stuck in there)
The shower doesn't even get all that hot. It gets warm enough to not freeze- that's about it.
I don't know what to do. I don't want to come across as rude and/or accusatory to the landlady, but I also need to be safe.
In other news, I saw the kidney doc the other day and he said that my kidney function is stable. Not better, but not worse. I'll take what I can get. He also says that he doesn't believe the scale that says I have gained weight. He says I am definitely smaller and he can tell I have been exercising.
I am going in on Monday to meet with a rep about insulin pumps and to be put on a saline pump to see if I can handle it before making my decision about it. My insurance does not and will not cover the tube-less pump, as it is not considered a "sustainable device" and I am really nervous about having a tube hanging out of me, because, not for nothing, but I am a superklutz. We shall see, I guess. I don't really know what to think yet.
My stomach still hates me. I still haven't been eating much. I did have a gastric emptying exam this week so I need to get in touch with whomever is reviewing that so maybe I can get some less-vague answers this time.
Oh, and I was thrown (physicall) out of a cab last weekend and I knew I was hurt, but thought it was mostly from being scared and a little bruised. I was wrong. Something is seriously up with my back and I need to get it checked out.
My other chief concern of the moment is my voice. I fear I am losing it. I lost my voice for 7 years before. I can't do that again. I just can't. I need to sing. I have to. I need to be able to sing relatively WELL too. Something is happening to it and I don't even have the first clue on what kind of doctor I would need to see to address this situation, or if my insurance would cover such a doctor.
It is 5:25am and I have been up since 8am, and only got two hours of sleep before that. I should probably go try to pass out now.
I am still suffering now, but definitely more mobile... probably TOO mobile right now... I think I walked at LEAST 40 miles this week, and still had a boatload of doctor appointments.
So the other night, I went to cook something in the oven for the first time since I moved in. I set it to preheat, (empty) and less than 10 minutes later, the alarm was going off. There didn't seem to be much/any smoke, but there was a definite smell, so I don't know if it was the smoke or the carbon monoxide detector.. i hope there IS a carbon monoxide detector... I went to open the windows to find that they are apparently painted shut (the kitchen ones) I went to open the middle room ones and the top of one fell down when I unlocked it and the other one seems to be the only one in the house that opens, but like ALL of them, there is some kind of fixture on it that makes it only open about 4 inches. This means that, in the event of a fire, unless I physically BREAK a window, I have ONE exit and one exit only- through the kitchen door.
Tonight, I noticed that the middle yard-facing window in my bedroom was cracked, and since it got cold again, I went to close it, and the top fell down. I can't reach high enough to get it to close all the way, and the lock seems to be busted.
I thought I was freezing all this time because of pneumonia. It may well be that I got and kept the pneumonia because the freaking windows have been open since before I moved in and I didn't know it because I was (am) so sick.
I had the thermostat turned all the way down for the past few days, but since it got cold again, I turned it on, and now the house smells.
The hose in the kitchen sink does not come out of its holster thingy, and also fills up when I try to do dishes (this happened the first time I ever turned the faucet on, so its not like I had something stuck in there)
The shower doesn't even get all that hot. It gets warm enough to not freeze- that's about it.
I don't know what to do. I don't want to come across as rude and/or accusatory to the landlady, but I also need to be safe.
In other news, I saw the kidney doc the other day and he said that my kidney function is stable. Not better, but not worse. I'll take what I can get. He also says that he doesn't believe the scale that says I have gained weight. He says I am definitely smaller and he can tell I have been exercising.
I am going in on Monday to meet with a rep about insulin pumps and to be put on a saline pump to see if I can handle it before making my decision about it. My insurance does not and will not cover the tube-less pump, as it is not considered a "sustainable device" and I am really nervous about having a tube hanging out of me, because, not for nothing, but I am a superklutz. We shall see, I guess. I don't really know what to think yet.
My stomach still hates me. I still haven't been eating much. I did have a gastric emptying exam this week so I need to get in touch with whomever is reviewing that so maybe I can get some less-vague answers this time.
Oh, and I was thrown (physicall) out of a cab last weekend and I knew I was hurt, but thought it was mostly from being scared and a little bruised. I was wrong. Something is seriously up with my back and I need to get it checked out.
My other chief concern of the moment is my voice. I fear I am losing it. I lost my voice for 7 years before. I can't do that again. I just can't. I need to sing. I have to. I need to be able to sing relatively WELL too. Something is happening to it and I don't even have the first clue on what kind of doctor I would need to see to address this situation, or if my insurance would cover such a doctor.
It is 5:25am and I have been up since 8am, and only got two hours of sleep before that. I should probably go try to pass out now.
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