A certain specialist for a certain thing may have gone ahead and canceled all of my appointments in any way related to this certain thing without my knowledge or consent, the act of which may have rendered 5 months of very hard work and thensome, basically moot.
I may have decided to continue with a certain part of the "training" for this thing yesterday and there may have been a class involved.
Let's say, for sciences' sake, that the class was on "exercise and dehydration" and that there were handouts passed out with information on them. Let's then say that the person "teaching" asked questions, the answers too which were all right there in black and white. Let's also say that instead of reading the answers in order, exactly as they were on the papers, as answers, when asked for "examples of exercise" I volunteered answers that were nowhere to be seen on the papers, such as "housework" and "caring for/playing with/picking up/chasing after children and/or pets" and I was LAUGHED AT. Yes. Laughed at. Not by the class. By the "teacher". I don't even think that these notions are that far OUT of the box. Have you ever MET a child or a pet? Ever seen one on television? Yeah. I rest my case.
My hands are killing me and I took no medicine today, so I need to go change that. More when I can. I start PT for hand tomorrow.
Showing posts with label swelling. Show all posts
Showing posts with label swelling. Show all posts
Thursday, March 13, 2014
Friday, February 21, 2014
Pain
I am in so much pain.
I have virrtually no use of my left hand whatsoever, and am told I must keep it above my heart at all times,
It hurts like hell. There is sharp pain, and tingling, and numbness and throbbing, and it feels like my fingers are full of fluid and i have no idea what is normal. The pain meds barely even take the edge off. I don't know what to do. I feel so helpless,
I have virrtually no use of my left hand whatsoever, and am told I must keep it above my heart at all times,
It hurts like hell. There is sharp pain, and tingling, and numbness and throbbing, and it feels like my fingers are full of fluid and i have no idea what is normal. The pain meds barely even take the edge off. I don't know what to do. I feel so helpless,
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.
Friday, January 21, 2011
Don't tell me that socialization doesn't better my health!
I am a pretty socially-awkward person, as a general rule. I don't always know how to talk to people, which, in some cases, means that I ramble and say too much and therefore weird people out. and in other cases, I don't say enough, and I miss out on things, or make people think that I am either rude, un-approachable, or both. There is very rarely a happy medium in that regard.
That being said, my state of mental health is almost always better when I do things of a social nature, be that participating in community theatre, going to a show, or just hanging out with friends, family, or framily (my friends who are like family, ain't I creative?). My physical health, I think, also benefits from these things.
For example, the edema, still on-going, more than likely led to some weight gain, in addition to the gain from the edema itself. Doing things like the aforementioned activities gets me out, gets me moving. Granted, I get out and get moving when I am on my own too, but I just feel so many times better when I get to have the human interaction.
There is mold in my apartment. It is not visible, and I don't yet know what to do, but I am looking into it. I am fairly certain that whatever is going on here is the reason I am sick. Perhaps not all of it, but I am certain that something here is the main reason that all of this started.
The strain that was found in the petri dish I sent to the lab (at my own expense) is called BIPOLARIS/DRECHSLERA, and while it is not a "black mold" it is seemingly invisible here, but here... all over my apartment, as I placed the petri dish in the middle of the relatively small space. There is a minimal amount of visible mold in the bathroom, which was here when I moved it, and I have cleaned it multiple times and it just keeps coming back. When I first moved in here, the landlord, in passing, said that the previous tenant had moved out after a very short time because he was "allergic to something" and shrugged it off. He said it so casually that I really thought nothing about it. After about 2 months of living here is when this whole fiasco started and my health has been a never-ending downward spiral.
I still have a lot of investigating to do, but I plan on researching this quite a bit and seeing what can be done about it. All the while, I am desperately searching for a new place to be on 3/1/11.
That being said, my state of mental health is almost always better when I do things of a social nature, be that participating in community theatre, going to a show, or just hanging out with friends, family, or framily (my friends who are like family, ain't I creative?). My physical health, I think, also benefits from these things.
For example, the edema, still on-going, more than likely led to some weight gain, in addition to the gain from the edema itself. Doing things like the aforementioned activities gets me out, gets me moving. Granted, I get out and get moving when I am on my own too, but I just feel so many times better when I get to have the human interaction.
There is mold in my apartment. It is not visible, and I don't yet know what to do, but I am looking into it. I am fairly certain that whatever is going on here is the reason I am sick. Perhaps not all of it, but I am certain that something here is the main reason that all of this started.
The strain that was found in the petri dish I sent to the lab (at my own expense) is called BIPOLARIS/DRECHSLERA, and while it is not a "black mold" it is seemingly invisible here, but here... all over my apartment, as I placed the petri dish in the middle of the relatively small space. There is a minimal amount of visible mold in the bathroom, which was here when I moved it, and I have cleaned it multiple times and it just keeps coming back. When I first moved in here, the landlord, in passing, said that the previous tenant had moved out after a very short time because he was "allergic to something" and shrugged it off. He said it so casually that I really thought nothing about it. After about 2 months of living here is when this whole fiasco started and my health has been a never-ending downward spiral.
I still have a lot of investigating to do, but I plan on researching this quite a bit and seeing what can be done about it. All the while, I am desperately searching for a new place to be on 3/1/11.
Tuesday, October 26, 2010
Oops?
It seems that the reason my blood sugars were so high (and therefore my A1C took a hike) is that I was given the wrong chart of how much Humalog to take, and therefore was taking an insufficient amount several times a day.
I am on a more accurate scale now, and the sugars are on their way to the right place now. Yay!
I have stayed under 230lbs for a couple of months now. I am happy with that, in that it isn't 265lbs, but very frustrated that I am not losing more, since I don't eat very much, and I exercise a LOT. There is still a lot more edema than there is fat. Like, I am so swollen that I can't put my arms all the way down- they just pop outward and it makes me VERY self-conscious.
I have been taking Turmeric supplements to see if that would help. I don't know yet if it is.
My sleep schedule is still basically non-existent. That bothers me. I basically don't use my CPAP machine because it really seems to make matters much, much worse.
I am at a loss. At the same time, I keep trying. I gave my endocrinologist a form to apply to a program in Maryland that deals with un-diagnosed diseases. It is a long-shot, but I figure it is worth a try. The worst they can do is not accept me, and I'd be no different than I am now. If t hey do accept me, MAYBE I can get some answers. Til then, I will keep searching.
I am supposed to see a Neurologist sometime soon. I should check on when that is...
I am on a more accurate scale now, and the sugars are on their way to the right place now. Yay!
I have stayed under 230lbs for a couple of months now. I am happy with that, in that it isn't 265lbs, but very frustrated that I am not losing more, since I don't eat very much, and I exercise a LOT. There is still a lot more edema than there is fat. Like, I am so swollen that I can't put my arms all the way down- they just pop outward and it makes me VERY self-conscious.
I have been taking Turmeric supplements to see if that would help. I don't know yet if it is.
My sleep schedule is still basically non-existent. That bothers me. I basically don't use my CPAP machine because it really seems to make matters much, much worse.
I am at a loss. At the same time, I keep trying. I gave my endocrinologist a form to apply to a program in Maryland that deals with un-diagnosed diseases. It is a long-shot, but I figure it is worth a try. The worst they can do is not accept me, and I'd be no different than I am now. If t hey do accept me, MAYBE I can get some answers. Til then, I will keep searching.
I am supposed to see a Neurologist sometime soon. I should check on when that is...
Sunday, June 20, 2010
I should post something...
I am very overwhelmed.
Right now, my head and ears are killing me and I am dizzy upon returning from a concert at which I was seated in the balcony. I honestly wonder if that has something to do with it. I was dizzy the moment I looked down, and almost fell twice on the stairs.
Anyway, I went to the "info session" for gastric bypass and then I went to see the surgeon a week later and he basically said that I am just a morbidly obese crazy person.
He didn't use those exact words, but pretty damn close. I will write more when I can.
I also had an appointment with the retina fellow on Friday. He thinks the vitrectomy may have to happen soon. I am assuming I will hear from MY retina doc's office later on today to schedule a follow-up so he can make that determination.
Right now, my head and ears are killing me and I am dizzy upon returning from a concert at which I was seated in the balcony. I honestly wonder if that has something to do with it. I was dizzy the moment I looked down, and almost fell twice on the stairs.
Anyway, I went to the "info session" for gastric bypass and then I went to see the surgeon a week later and he basically said that I am just a morbidly obese crazy person.
He didn't use those exact words, but pretty damn close. I will write more when I can.
I also had an appointment with the retina fellow on Friday. He thinks the vitrectomy may have to happen soon. I am assuming I will hear from MY retina doc's office later on today to schedule a follow-up so he can make that determination.
Thursday, May 6, 2010
Wait.... WHAT!?
So those dietitian/nutritionist appointments I had this week?
First, the dietitian was trying to help me with carb counting, which was all well and good until she started using McDonald's items as examples.
Anyone who knows me knows I don't tend to eat that crap.
Then, I went to the nutritionist, and (this is the 2nd time I have met him) he came in and said "your diabetes is in terrible control" to which I responded "Excuse me? Look at my numbers. I have a ways to go, but my A1c is down to 9 from FOURTEEN, so don't you DARE say that to me." He looked at my chart and realized that I was correct.
He then upped the does of my thyroid medication and sent in a referral for Gastric Bypass Surgery.
*blinkblink*
2 years I have been trying to figure out how and why I gained 100lbs in 3 days and NOBODY can tell me any damn thing... but NOBODY has brought up GBS.
I am going in for an information session (which apparently is "mandatory" if I do wind up wanting it...) in about a month. I will hear them out. I am indeed curious to see WHY they think that a surgery to remove FAT from my body will be of any use when its the FLUID that is the problem. Really.
I am going in with a positive attitude and an open mind.. but I will also be going in chock full of questions and hopefully with a friend or few to help me get them answered.
Meanwhile, the anxiety issues still trouble me, and I am again wide awake at 3am.
First, the dietitian was trying to help me with carb counting, which was all well and good until she started using McDonald's items as examples.
Anyone who knows me knows I don't tend to eat that crap.
Then, I went to the nutritionist, and (this is the 2nd time I have met him) he came in and said "your diabetes is in terrible control" to which I responded "Excuse me? Look at my numbers. I have a ways to go, but my A1c is down to 9 from FOURTEEN, so don't you DARE say that to me." He looked at my chart and realized that I was correct.
He then upped the does of my thyroid medication and sent in a referral for Gastric Bypass Surgery.
*blinkblink*
2 years I have been trying to figure out how and why I gained 100lbs in 3 days and NOBODY can tell me any damn thing... but NOBODY has brought up GBS.
I am going in for an information session (which apparently is "mandatory" if I do wind up wanting it...) in about a month. I will hear them out. I am indeed curious to see WHY they think that a surgery to remove FAT from my body will be of any use when its the FLUID that is the problem. Really.
I am going in with a positive attitude and an open mind.. but I will also be going in chock full of questions and hopefully with a friend or few to help me get them answered.
Meanwhile, the anxiety issues still trouble me, and I am again wide awake at 3am.
Sunday, May 2, 2010
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.
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.
Saturday, April 3, 2010
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.
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.
Tuesday, March 30, 2010
More on that...
I went back to the ER on Saturday.
The pain did not stop, and it got worse. I got pain in my lower back, and a really terrible, bizarre pain that started in the front-right side of my nack and wrapped around to the center back-right side of my neck. It hurt SO badly. I also swelled up more.
I wound up getting admitted.
The staff at this particular hospital were so great. They treated me like a human being, and really seemed to want to find out what the heck was going on.
Sadly, when they discharged me on Monday afternoon, all they had to say was "Well, we're not going to diagnose you with any weird diseases or do any invasive surgical procedures, but we still have no idea what is going on, sorry." Yeah. So that didn't help much.
While I was in, they did a cortisol test (?) where they took blood, injected me with something and then took more blood an hour later. They say the test showed it wasn't the cortisol levels..
They took an HIV test, and that was negative.
My Potassium was low one time, so they gave me some to drink, and I guess it brought it back up.
My blood sugars have been pretty darn good too.
I have no idea what the heck is going on. It's been almost 2 years. I need answers.
The pain did not stop, and it got worse. I got pain in my lower back, and a really terrible, bizarre pain that started in the front-right side of my nack and wrapped around to the center back-right side of my neck. It hurt SO badly. I also swelled up more.
I wound up getting admitted.
The staff at this particular hospital were so great. They treated me like a human being, and really seemed to want to find out what the heck was going on.
Sadly, when they discharged me on Monday afternoon, all they had to say was "Well, we're not going to diagnose you with any weird diseases or do any invasive surgical procedures, but we still have no idea what is going on, sorry." Yeah. So that didn't help much.
While I was in, they did a cortisol test (?) where they took blood, injected me with something and then took more blood an hour later. They say the test showed it wasn't the cortisol levels..
They took an HIV test, and that was negative.
My Potassium was low one time, so they gave me some to drink, and I guess it brought it back up.
My blood sugars have been pretty darn good too.
I have no idea what the heck is going on. It's been almost 2 years. I need answers.
Friday, March 26, 2010
So let's see...
Last week, I had a kidney doc appointment. I got seen 2 hours after my appointment time, and only for about 15 minutes, most of which was spent with the doc typing. I left to go to the blood lab and wound up having to sit down for a while and eat a liquid lollipop because my blood sugar had taken a nose dive. Got blood work done, and left.
On Thursday, I had an endocrine appointment. got praised for doing well and having my A1C drop several points. I have a ways to go, but am back in the single digits, which is good. More blood work.
Friday I went to New York City for a show and spent the night wandering around. I was walking almost the entire time between 12:20am and 8am, with the exception of about an hour or two total. I mapped it out a bit and estimate that I walked just less than a marathon. When I got back to Boston, I threw up blood at the train station and was rushed to the hospital, where I was treated like absolute shit. I was discharged with Ranitadine, Protonix, and Zofran(?) which was not covered by insurance and cost about $70. Eep. I spent the next couple of days pretty much unable to move, and had another swelling episode. I stopped the Protonix, as that had made me gain weight in the past... I am still swollen though, and in a lot of pain.
On Wednesday, I had an appointment, and then I went to visit a friend of mine. I was fine, albeit a bit tired, and then all of a sudden I had a massive stabbing pain in the lower left side of my stomach and I could barely move. I felt like I had to pee, so I went into the bathroom. Nothing. Here I am, the girl on 2 diuretics, unable to pee. This is not good. My friend insisted on calling an ambulance. They came, they carried me down most of the stairs, and then they dropped me. No, I am not joking. They picked me back up, and got me into the ambulance and took me to yet another hospital. Luckily, this one treated me like a human being. It was almost freaky. They did a bunch of tests. It was scary, not gonna lie about that. It was also very odd that they wanted me to umm... put the thing in for the pelvic ultrasound BY MYSELF, but yeah, that wasn't about to happen, as the way I am swollen I certainly couldn't bend at the angle they had me at, and also, hello... abdominal pain!?!?!? They did an abdominal and pelvic ultrasound, a regular pelvic exam, and an abdominal CT. They said that I had blood in my urine, a cyst on my right ovary, and a small kidney stone, as well as probably ligament strain.
They gave me a prescription for oxycodone and discharged me. I still haven't filled the prescription because I can't get to the pharmacy. I haven't eaten since the very small amount I had at about 7am on Thursday. I've got nothing to eat or drink in the house, so basically, I am screwed.
On Thursday, I had an endocrine appointment. got praised for doing well and having my A1C drop several points. I have a ways to go, but am back in the single digits, which is good. More blood work.
Friday I went to New York City for a show and spent the night wandering around. I was walking almost the entire time between 12:20am and 8am, with the exception of about an hour or two total. I mapped it out a bit and estimate that I walked just less than a marathon. When I got back to Boston, I threw up blood at the train station and was rushed to the hospital, where I was treated like absolute shit. I was discharged with Ranitadine, Protonix, and Zofran(?) which was not covered by insurance and cost about $70. Eep. I spent the next couple of days pretty much unable to move, and had another swelling episode. I stopped the Protonix, as that had made me gain weight in the past... I am still swollen though, and in a lot of pain.
On Wednesday, I had an appointment, and then I went to visit a friend of mine. I was fine, albeit a bit tired, and then all of a sudden I had a massive stabbing pain in the lower left side of my stomach and I could barely move. I felt like I had to pee, so I went into the bathroom. Nothing. Here I am, the girl on 2 diuretics, unable to pee. This is not good. My friend insisted on calling an ambulance. They came, they carried me down most of the stairs, and then they dropped me. No, I am not joking. They picked me back up, and got me into the ambulance and took me to yet another hospital. Luckily, this one treated me like a human being. It was almost freaky. They did a bunch of tests. It was scary, not gonna lie about that. It was also very odd that they wanted me to umm... put the thing in for the pelvic ultrasound BY MYSELF, but yeah, that wasn't about to happen, as the way I am swollen I certainly couldn't bend at the angle they had me at, and also, hello... abdominal pain!?!?!? They did an abdominal and pelvic ultrasound, a regular pelvic exam, and an abdominal CT. They said that I had blood in my urine, a cyst on my right ovary, and a small kidney stone, as well as probably ligament strain.
They gave me a prescription for oxycodone and discharged me. I still haven't filled the prescription because I can't get to the pharmacy. I haven't eaten since the very small amount I had at about 7am on Thursday. I've got nothing to eat or drink in the house, so basically, I am screwed.
Thursday, March 11, 2010
Still moving along...
I always think that I should be updating this thing more often, but then I stop and think "Well, what is the point, its the same old story again" which os pretty much the case right now.
I continue to walk. Quite a bit, actually. In fact, just this weekend I walked around for an hour and a half, looking for a group of people I was supposed to meet up with for a random, unknown spontaneous event.
Once I finally found them, it turns out that there would be more "walking" involved- a la Society of Silly Walks. Basically, I was walking around in one way or another from 1pm- 6pm. Man, did my body ever hate me for that!! Still, it was fun.
I also walked about 2 miles on Friday, and have been pretty active all week thus far. Oh, did I mention that I may or may not have a break in my left ankle/heel? Yeah, so a lot of this was with an air cast on or just having taken it off.
As far as doctors are concerned, I see both the kidney specialist and the endocrinologist next week. I don't really know what to expect. I wish I could get moving toward the pump. I mean, I am definitely making progress, but I wonder when they will actually start me on it...
I don't really know what else to say that isn't totally stale. I am still sick to death of being swollen and in pain, but I am doing the very best I can to avoid being negative and live my life to the fullest.
I continue to walk. Quite a bit, actually. In fact, just this weekend I walked around for an hour and a half, looking for a group of people I was supposed to meet up with for a random, unknown spontaneous event.
Once I finally found them, it turns out that there would be more "walking" involved- a la Society of Silly Walks. Basically, I was walking around in one way or another from 1pm- 6pm. Man, did my body ever hate me for that!! Still, it was fun.
I also walked about 2 miles on Friday, and have been pretty active all week thus far. Oh, did I mention that I may or may not have a break in my left ankle/heel? Yeah, so a lot of this was with an air cast on or just having taken it off.
As far as doctors are concerned, I see both the kidney specialist and the endocrinologist next week. I don't really know what to expect. I wish I could get moving toward the pump. I mean, I am definitely making progress, but I wonder when they will actually start me on it...
I don't really know what else to say that isn't totally stale. I am still sick to death of being swollen and in pain, but I am doing the very best I can to avoid being negative and live my life to the fullest.
Tuesday, February 9, 2010
Right...
So, my primary care doc DID call me back, and she said that she wanted my kidney doc to deal with the Bumex issue since she put me on it and would know more about it. I had to call the kidney doc's office 3 times and finally got a call from the doc at about 6pm on Tuesday evening.
Her take on the matter is that there was no way it was the Bumex causing these issues (which seemed to be of no concern to her WHATSOEVER) and she recommended doubling the dose of the Bumex.
Against my better judgment, I did, and things are pretty much the same.
I am in a lot of pain.
My legs (shins/calves/ankles) have been buckling something fierce and causing extreme pain. I have been a bit dizzy fairly frequently.
Despite being told that my potassium levels are fine, the dizziness tends to subside if I eat a banana. I don't know what to think.
I have been pushing and pushing myself to walk/get exercise daily. I tend to walk at least a mile a day. It HURTS. I feel like I will die with every step. I feel like I could fall down at any given moment and not be able to get up. It is so scary.
I am really lost. I wish it would stop.
Her take on the matter is that there was no way it was the Bumex causing these issues (which seemed to be of no concern to her WHATSOEVER) and she recommended doubling the dose of the Bumex.
Against my better judgment, I did, and things are pretty much the same.
I am in a lot of pain.
My legs (shins/calves/ankles) have been buckling something fierce and causing extreme pain. I have been a bit dizzy fairly frequently.
Despite being told that my potassium levels are fine, the dizziness tends to subside if I eat a banana. I don't know what to think.
I have been pushing and pushing myself to walk/get exercise daily. I tend to walk at least a mile a day. It HURTS. I feel like I will die with every step. I feel like I could fall down at any given moment and not be able to get up. It is so scary.
I am really lost. I wish it would stop.
Monday, February 1, 2010
Ow.
So I just left a voicemail for my primary care doctor. I was pretty much crying like a baby.
Since I started the Bumex a few days ago, I have been in more pain, been moving less effectively, more swollen...
It has just been so bad.
My mother went to give me a hug goodbye and I jumped a mile from pain.
She said there is a lump on my back about the size of the palm of my hand.
I told the doc in my voicemail that I can't take it and need to know what to do. Hopefully she calls in the morning. She's usually pretty good about that sort of thing.
I can't even describe to you how I feel right now.
Then pain is so bad.
Since I started the Bumex a few days ago, I have been in more pain, been moving less effectively, more swollen...
It has just been so bad.
My mother went to give me a hug goodbye and I jumped a mile from pain.
She said there is a lump on my back about the size of the palm of my hand.
I told the doc in my voicemail that I can't take it and need to know what to do. Hopefully she calls in the morning. She's usually pretty good about that sort of thing.
I can't even describe to you how I feel right now.
Then pain is so bad.
Briefly...
I asked my PCP about the Topamax and she said that she would leave it up to me.
Generally, I would go with less chemicals/drugs= better, and I have not started it up again, but I have been in extreme pain lately. I am not really sure what to do.
I almost passed out from the pain of my calves/ankles buckling on the way to the bus stop yesterday.
I started on the Bumex 3 days ago and the pain has been worse since then.. and I have some painful bumps on my back/shoulders. I don't know if its a coincidence, or related to the drug.
Trying to figure that out.
Other than that, I feel more swollen, more pain, just.. yeah.
Also, I THINK that I was on Bumex before and that it didn't work... going to have to scroll back through entries on here and look into that when I have a moment.
Generally, I would go with less chemicals/drugs= better, and I have not started it up again, but I have been in extreme pain lately. I am not really sure what to do.
I almost passed out from the pain of my calves/ankles buckling on the way to the bus stop yesterday.
I started on the Bumex 3 days ago and the pain has been worse since then.. and I have some painful bumps on my back/shoulders. I don't know if its a coincidence, or related to the drug.
Trying to figure that out.
Other than that, I feel more swollen, more pain, just.. yeah.
Also, I THINK that I was on Bumex before and that it didn't work... going to have to scroll back through entries on here and look into that when I have a moment.
Tuesday, January 26, 2010
Answers? You don't need no stinking answers!
That seems to be what everyone is telling me these days.
Since May 9, 2008 I have been dealing with this on a daily basis, and not one single answer.
Today, I saw the kidney doc, and got a whole bunch of nothing.
I mean, I was diagnosed with kidney disease, and now they can't even tell me what stage I am in? How screwy does that sound to anyone else, because it sounds really damn screwy to me.
Let's backtrack for a sec.
~On 5.9.08, I weighed 165lbs, possibly 170lbs, due to the broken toes on both feet.
~Later in the day on 5.9.08, I weighed 200lbs, was breathing funny, and had no ankles.
~Was told by the hospital it was in my head, given an Ativan and sent home.
~Went to 2nd hospital on 5.11.08 and was given oxygen and told that since I am "not dying right now, we can't help you" and sent home.
~Hospitalized on 1.20.09 with a hugh fever, vomiting, shaking, the works. Inpatient for a week, not allowed to eat or drink and losing all matter of fluids in all manner of ways, yet still swelled up 15 more lbs overnight and nobody cared.
~Echos have been normal
~Leg US have been normal
~Stress test was normal
~MRI revealed benign tumor on my liver, and was ordered off of birth control in 7/08.
~Random episodes of swelling do not seem to be in correlation with any specific event/food/drink and have gotten me to 263lbs max.
~Meds being switched constantly, including today.
Med list:
Lantus insulin
Humalog insulin
Metolazone 2.5mg
Bumex 2mg (starting tomorrow or whenever I can pick it up- this is replacing the 80mg/Lasix)
Levoxyl 100mcg
Diovan 80mg (my BP doesn't tend to be all that high, this is for kidney protection, but now they are talking about how I should be on a higher dose, but I STARTED on a higher does and almost fainted straight away)
Zyrtect 10mg
Vitamin D 800mg/daily & 50,000mg/weekly
Omega 3 Fish Oil which is for cholesterol, but it is not covered, so I don't know how long I will be able to take it if I can't afford it. I have been DEATHLY allergic to every "medicinal" cholesterol med I have tried, so the nurse wrote for this. Insurance will pay $300/month for something that will kill me, but they won't pay $10/month for something that could very well help me. Go figure.
As needed: Proventil, Ranitadine, Flonase
Unsure: Topamax- was on this for years, taken off of it for a medical study I was in. Am done with the study and unsure as to weather or not I should go back on it or not. Kidney doc refused to say, have left message with my PCP.
Recent test results (rec'd 1.8.10):
Chemistries
Na 139
K 4.9
Cl 101
co2 28.1
Ca 9.3
Mg 2.2
PO4 4.5
Kidney tests: "Your kidney function is stable. Creatinine has improved since last check."
Glucose: "Your blood sugar is stable."
Liver tests
Protein 6.7
Alb 3.9
AST 16
ALT 20
ALP 153
T Bili 0.2
D Bili 0.1
Cholesterol "Slightly better than last time, except triglycerides, but this is not a fasting and this affects the results."
Cholesterol total 245
Bad Cholesterol (LDL) 143
Good Cholesterol (HDL) 51
Triglycerides 256
Thyroid Tests: "Your thyroid tests are normal."
TSH 1.67
So yeah, that's about it. I don't know what all of the tests/results mean, but I don't get answers when I ask. I have been told by my kidney doc that she has no other ideas, no other tests, no suggestions of another sort of specialist to seek out answers from.
I asked about natural suggestions and was told only that they are dangerous. (Right, so like, I have low potassium and I eat a banana and it will kill me? Bananas are natural and contain potassium. Please explain to me how this will hurt me? All I wanted was maybe a list of food that might AIDE in the getting rid of fluids...)
I am so lost. Please make it stop. I am begging, if any random person who reads this happens to know someone, some way who can help, I would be eternally grateful.
Since May 9, 2008 I have been dealing with this on a daily basis, and not one single answer.
Today, I saw the kidney doc, and got a whole bunch of nothing.
I mean, I was diagnosed with kidney disease, and now they can't even tell me what stage I am in? How screwy does that sound to anyone else, because it sounds really damn screwy to me.
Let's backtrack for a sec.
~On 5.9.08, I weighed 165lbs, possibly 170lbs, due to the broken toes on both feet.
~Later in the day on 5.9.08, I weighed 200lbs, was breathing funny, and had no ankles.
~Was told by the hospital it was in my head, given an Ativan and sent home.
~Went to 2nd hospital on 5.11.08 and was given oxygen and told that since I am "not dying right now, we can't help you" and sent home.
~Hospitalized on 1.20.09 with a hugh fever, vomiting, shaking, the works. Inpatient for a week, not allowed to eat or drink and losing all matter of fluids in all manner of ways, yet still swelled up 15 more lbs overnight and nobody cared.
~Echos have been normal
~Leg US have been normal
~Stress test was normal
~MRI revealed benign tumor on my liver, and was ordered off of birth control in 7/08.
~Random episodes of swelling do not seem to be in correlation with any specific event/food/drink and have gotten me to 263lbs max.
~Meds being switched constantly, including today.
Med list:
Lantus insulin
Humalog insulin
Metolazone 2.5mg
Bumex 2mg (starting tomorrow or whenever I can pick it up- this is replacing the 80mg/Lasix)
Levoxyl 100mcg
Diovan 80mg (my BP doesn't tend to be all that high, this is for kidney protection, but now they are talking about how I should be on a higher dose, but I STARTED on a higher does and almost fainted straight away)
Zyrtect 10mg
Vitamin D 800mg/daily & 50,000mg/weekly
Omega 3 Fish Oil which is for cholesterol, but it is not covered, so I don't know how long I will be able to take it if I can't afford it. I have been DEATHLY allergic to every "medicinal" cholesterol med I have tried, so the nurse wrote for this. Insurance will pay $300/month for something that will kill me, but they won't pay $10/month for something that could very well help me. Go figure.
As needed: Proventil, Ranitadine, Flonase
Unsure: Topamax- was on this for years, taken off of it for a medical study I was in. Am done with the study and unsure as to weather or not I should go back on it or not. Kidney doc refused to say, have left message with my PCP.
Recent test results (rec'd 1.8.10):
Chemistries
Na 139
K 4.9
Cl 101
co2 28.1
Ca 9.3
Mg 2.2
PO4 4.5
Kidney tests: "Your kidney function is stable. Creatinine has improved since last check."
Glucose: "Your blood sugar is stable."
Liver tests
Protein 6.7
Alb 3.9
AST 16
ALT 20
ALP 153
T Bili 0.2
D Bili 0.1
Cholesterol "Slightly better than last time, except triglycerides, but this is not a fasting and this affects the results."
Cholesterol total 245
Bad Cholesterol (LDL) 143
Good Cholesterol (HDL) 51
Triglycerides 256
Thyroid Tests: "Your thyroid tests are normal."
TSH 1.67
So yeah, that's about it. I don't know what all of the tests/results mean, but I don't get answers when I ask. I have been told by my kidney doc that she has no other ideas, no other tests, no suggestions of another sort of specialist to seek out answers from.
I asked about natural suggestions and was told only that they are dangerous. (Right, so like, I have low potassium and I eat a banana and it will kill me? Bananas are natural and contain potassium. Please explain to me how this will hurt me? All I wanted was maybe a list of food that might AIDE in the getting rid of fluids...)
I am so lost. Please make it stop. I am begging, if any random person who reads this happens to know someone, some way who can help, I would be eternally grateful.
Wednesday, December 9, 2009
Still sick.
Today, I have SLIGHTLY less pain in my throat, depending on the moment. Both of my ears still hurt a lot, and it is still difficult/painful to swallow.
I have been short of breath, and coughing a lot.
I have been drinking a lot of fluids, as I was instructed. In fact, the ONLY thing I have had today is 2 pints of chicken broth with mini croutons, two small shortbread cookies, and water.
The cough is sometimes wheezy, sometimes dry and hacking, and this evening there has been a LOT of thick, sticky, opaque white sputum- sometimes with traces of blood. When it isn't thick and sticky, it is frothy/bubbly.
My ankles are even more swollen than usual, as are the rest of my feet.
Also, yesterday, I had smoked salmon & cream cheese on a bagel for dinner, and my urine smells like smoked salmon now... and I have had tons of broth, water, and I pee a lot.
I would think it would be out of my system by now.. but I have never had this happen, and it is really bizarre.
My entire body aches. It seems to just keep getting worse. I don't know what to do.
I have been short of breath, and coughing a lot.
I have been drinking a lot of fluids, as I was instructed. In fact, the ONLY thing I have had today is 2 pints of chicken broth with mini croutons, two small shortbread cookies, and water.
The cough is sometimes wheezy, sometimes dry and hacking, and this evening there has been a LOT of thick, sticky, opaque white sputum- sometimes with traces of blood. When it isn't thick and sticky, it is frothy/bubbly.
My ankles are even more swollen than usual, as are the rest of my feet.
Also, yesterday, I had smoked salmon & cream cheese on a bagel for dinner, and my urine smells like smoked salmon now... and I have had tons of broth, water, and I pee a lot.
I would think it would be out of my system by now.. but I have never had this happen, and it is really bizarre.
My entire body aches. It seems to just keep getting worse. I don't know what to do.
Friday, November 20, 2009
That didn't take long...
I pretty much called my PCP crying because I am so sick over this whole thing.
I told her that there was no change/I got worse while on the Torsemide. She has said to go back on the Lasix, and is starting me on another diuretic to take WITH it. I don't recall the name, I have to pick it up tomorrow and will start it then.
I was also told to make sure my potassium levels get re-checked next time I go in, to make sure that everything is as it should be in that regard.
She also said that someone should be calling me about getting an echo-cardiogram shortly.
I am having really weird chest pains today.
Very random.
It sporadically feels like someone is stabbing me in the right side of my chest.
It hurts.
I am not doing anything too strenuous today... no idea why this is happening, it started a few hours ago.
I am so sick of this.
I told her that there was no change/I got worse while on the Torsemide. She has said to go back on the Lasix, and is starting me on another diuretic to take WITH it. I don't recall the name, I have to pick it up tomorrow and will start it then.
I was also told to make sure my potassium levels get re-checked next time I go in, to make sure that everything is as it should be in that regard.
She also said that someone should be calling me about getting an echo-cardiogram shortly.
I am having really weird chest pains today.
Very random.
It sporadically feels like someone is stabbing me in the right side of my chest.
It hurts.
I am not doing anything too strenuous today... no idea why this is happening, it started a few hours ago.
I am so sick of this.
Wednesday, November 4, 2009
Here we go again...
On Monday night, I wound up going to the ER.
I was out of Lasix and didn't know it, but I was swollen like crazy BEFORE it was time to take the medicine. I swelled up about 10lbs over night.
The skin on my feet, calves and whatnot up to my knees.
My thighs won't even go together properly, and I can FEEL the water with my hands.
It is so painful.
A small rash type thing developed in my right ear and on the back of my neck when the swelling happened.
I was put next to a doctor who was doing dictations and I had a panic attack/PTSD episode because he was dictating some very graphic abuse.
They gave me an Ativan and IV Lasix and pretty much kicked me out the door.
The discharge sheet says that I swelled up because of my missed dose, even though I told them MANY times that I was swollen BEFORE missing my dose.
I am STILL swollen, even though I have had my Lasix as I normally do now.
I have an appointment with a sleep neurologist tomorrow, to follow-up about the CPAP machine, and an appointment with the diabetes nurse on Friday.
I also have a fibro-study visit on Tuesday and an appointment with my PCP on Wednesday. Here's hoping that I get some relief!
I am so swollen. My knees won't bend very much and it hurts so much.
I need a diagnostician. Immediately. I need to know what is going on.
I was out of Lasix and didn't know it, but I was swollen like crazy BEFORE it was time to take the medicine. I swelled up about 10lbs over night.
The skin on my feet, calves and whatnot up to my knees.
My thighs won't even go together properly, and I can FEEL the water with my hands.
It is so painful.
A small rash type thing developed in my right ear and on the back of my neck when the swelling happened.
I was put next to a doctor who was doing dictations and I had a panic attack/PTSD episode because he was dictating some very graphic abuse.
They gave me an Ativan and IV Lasix and pretty much kicked me out the door.
The discharge sheet says that I swelled up because of my missed dose, even though I told them MANY times that I was swollen BEFORE missing my dose.
I am STILL swollen, even though I have had my Lasix as I normally do now.
I have an appointment with a sleep neurologist tomorrow, to follow-up about the CPAP machine, and an appointment with the diabetes nurse on Friday.
I also have a fibro-study visit on Tuesday and an appointment with my PCP on Wednesday. Here's hoping that I get some relief!
I am so swollen. My knees won't bend very much and it hurts so much.
I need a diagnostician. Immediately. I need to know what is going on.
Wednesday, August 12, 2009
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.
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.
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