I found out that my potassium/sodium levels are fine on the Lasix, but that I have high cholesterol. I am not sure of the exact number though. I am allergic to statin drugs though, so I can't take the usual stuff. I was put on Gemfibrozil and was taking these monster pills twice a day, but I was feeling really, really bad and I called my PCP and was told to stop taking it and we will just revisit the options at my next appointment which is not yet booked.
I also have not heard from the retina doc's office yet about making that July appointment so I am a bit concerned about that too.
I will be giving them a call tomorrow to see what is going on.
I am still swollen, but I am down to about 243 from 260 a month ago, so that is good. I had plateaued for a bit and my PCP doubled my Lasix, so now I am on 80mg every morning.
I think everything else is the same, medicinewise.
Sunday, July 12, 2009
Wednesday, June 17, 2009
Brief update
I never heard back about the MRSA swab, so I can only assume that either it wasn't MRSA, or the blood that they swabbed did not have anything in it (they weren't able to get any of the pus type stuff out of the mess on my back/neck/shoulders).
I have finished the Clindamycin and some of the rash does seem to have gone away, so that is good.
I saw the endocrinologist and she seems very nice.
She lowered my dose of Lantus by 10 untits and put me on plain Humalog as opposed to the 75/25 mix, and I am now taking that a few times a day. (with meals)
I have lost between 7-10lbs on the Lasix so far, so here's hoping that it continues to work...
I did see my old new PCP on Monday, so that was good, despite there being a crazy crowd at the office. She said that the bloodwork the endo took showed that my vitamin D was low, so she prescribed vitamin D, and she re-tested the Potassium level because Lasix can make thise levels low and I'd only just begun when I saw the endo. We shall see.
I am still swollen, still in pain, but I am still plugging along hoping, and searching for answers.
I have finished the Clindamycin and some of the rash does seem to have gone away, so that is good.
I saw the endocrinologist and she seems very nice.
She lowered my dose of Lantus by 10 untits and put me on plain Humalog as opposed to the 75/25 mix, and I am now taking that a few times a day. (with meals)
I have lost between 7-10lbs on the Lasix so far, so here's hoping that it continues to work...
I did see my old new PCP on Monday, so that was good, despite there being a crazy crowd at the office. She said that the bloodwork the endo took showed that my vitamin D was low, so she prescribed vitamin D, and she re-tested the Potassium level because Lasix can make thise levels low and I'd only just begun when I saw the endo. We shall see.
I am still swollen, still in pain, but I am still plugging along hoping, and searching for answers.
Tuesday, June 9, 2009
Floating away... if only...
So I swelled up some more, and it got so brutally painful.
The skin problem spead and worsened and became unbearable and I could barely even sit in a normal chair, let alone get up and down like a "normal person".
We'd gone to a show earlier in the day, and as I sat down in the seat, my calves brushed against the front of the seat and folded over themselves, in a sense, and just... I don't even know how to describe it, but it hurt like hell and for quite a long time.
I was much worse when we got back to my place and finally I gave in and said that I needed to go to the hospital.
They did seem to listen more than in the past, I will give them that. They also admitted that they could see and feel the fluid in me.
They took a urine sample and a chest x-ray. Taking blood was quite a fiasco. I was stuck 2 or 3 times in my left arm and they couldn't get anything. Same with the right. So they came back after my x-ray and went for the artery in my right wrist... fun, yes? Ugh. They tried a few times there and wriggled the thing about a bit while I was told to NOT MOVE WHATEVER YOU DO!!! and still nothing. Yes, I am that damn swollen. Then they tried the artery in the left wrist, and finally, after wriggling about and taking around 15 minutes or so for 3 vials of blood, they were done with it.
Nothing really came of it.
The doctor did try to swab the nastiness on my neck/back for MRSA. There was no pus or anything at this point, but he lanced one and is culturing the blood. That can take a couple of days, I am told.
I was given a prescription for Lasix (40mg) and Clindamicin (antibiotic) and sent home. What I don't understand is why they gave me only 15 days worth of Lasix and why they are using the same dosage which has proven useless in the past. Oh, and I also don't get why they didn't give me any while I was there... do they EXPECT me to live near a 24 hour phanrmacy?!
This morning, my old PCP called. (I had left her a voice mail last week after the new one screamed at me) I have an appointment with her on Monday morning, so here's hoping I can get there. (I left initially because I moved a fair distance from her office, but now that I can't walk the mile to my new, local, abusive PCP's office due to mobility deteriorating, I guess its kind of moot now, isn't it?) Here's hoping things get a bit more organized.
Tomorrow I see an endocrinologist for the first time in many, may years.
Thursday, more lasers.
The skin problem spead and worsened and became unbearable and I could barely even sit in a normal chair, let alone get up and down like a "normal person".
We'd gone to a show earlier in the day, and as I sat down in the seat, my calves brushed against the front of the seat and folded over themselves, in a sense, and just... I don't even know how to describe it, but it hurt like hell and for quite a long time.
I was much worse when we got back to my place and finally I gave in and said that I needed to go to the hospital.
They did seem to listen more than in the past, I will give them that. They also admitted that they could see and feel the fluid in me.
They took a urine sample and a chest x-ray. Taking blood was quite a fiasco. I was stuck 2 or 3 times in my left arm and they couldn't get anything. Same with the right. So they came back after my x-ray and went for the artery in my right wrist... fun, yes? Ugh. They tried a few times there and wriggled the thing about a bit while I was told to NOT MOVE WHATEVER YOU DO!!! and still nothing. Yes, I am that damn swollen. Then they tried the artery in the left wrist, and finally, after wriggling about and taking around 15 minutes or so for 3 vials of blood, they were done with it.
Nothing really came of it.
The doctor did try to swab the nastiness on my neck/back for MRSA. There was no pus or anything at this point, but he lanced one and is culturing the blood. That can take a couple of days, I am told.
I was given a prescription for Lasix (40mg) and Clindamicin (antibiotic) and sent home. What I don't understand is why they gave me only 15 days worth of Lasix and why they are using the same dosage which has proven useless in the past. Oh, and I also don't get why they didn't give me any while I was there... do they EXPECT me to live near a 24 hour phanrmacy?!
This morning, my old PCP called. (I had left her a voice mail last week after the new one screamed at me) I have an appointment with her on Monday morning, so here's hoping I can get there. (I left initially because I moved a fair distance from her office, but now that I can't walk the mile to my new, local, abusive PCP's office due to mobility deteriorating, I guess its kind of moot now, isn't it?) Here's hoping things get a bit more organized.
Tomorrow I see an endocrinologist for the first time in many, may years.
Thursday, more lasers.
Wednesday, June 3, 2009
More
So I had the laser done to the right eye last week. I go in in a little over a week for the left eye. Right now I still have spots on the left eye and honestly can't tell if I have new bleeding or if the spots/blurring I have now is still from a couple of weeks ago. It is really quite frustrating. Scary too.
I spoke to the PCP today and he actually screamed at me. Mind you, I was not even accusing him of anything. Despite the fact that the fact that he did not do what he confirmed three times that he did do is HIS FAULT, I was not placing any blame or making any accuastions, I simply said that there must have been some lines crossed with the electric company because they don't have the letter so could be please send it again. Now, had he done it in the first place, he would have just had it to re-send. He didn't. I gave him all of the info again. He screamed at me that my electricity is not his problem, which it isn't, but keeping it on he can help with and I really don't see the gig deal. It is one sentence- literally, that they need from him. I pay my bills, like clockwork for the most part. I have been slightly lax with the electric because of extra medical junk going on BECAUSE I could get the protection. He claims that it isn't his problem. Well, if he can prevent it and he doesn't, and I wind up an asthmatic who can't plug in her nebulizer which runs on electricity, or cook food on her electric stove, or heat/ventilate her bathroom, or refrigerate her insulins... you see what I am getting at here?
Anyway, so moving on, I have swollen up even more. I am very nearly 260lbs now, despite the fact that I have been pushing and pushing and pushing myself all of the time. I walk as much as I can, and thensome. I don't eat all that much. I just don't get it.
I am in so much pain. My legs are getting worse, I not only can't nend them, but I can't extend them fully either. I wake up with my face swollen- moonface. My toes are so swollen that they have their own rolls over themselves and cut off their own circulation, as crazy as that sounds. It is not fair. I can't ned down to scratch. There is so much that I can't do.
I am scared.
I spoke to the PCP today and he actually screamed at me. Mind you, I was not even accusing him of anything. Despite the fact that the fact that he did not do what he confirmed three times that he did do is HIS FAULT, I was not placing any blame or making any accuastions, I simply said that there must have been some lines crossed with the electric company because they don't have the letter so could be please send it again. Now, had he done it in the first place, he would have just had it to re-send. He didn't. I gave him all of the info again. He screamed at me that my electricity is not his problem, which it isn't, but keeping it on he can help with and I really don't see the gig deal. It is one sentence- literally, that they need from him. I pay my bills, like clockwork for the most part. I have been slightly lax with the electric because of extra medical junk going on BECAUSE I could get the protection. He claims that it isn't his problem. Well, if he can prevent it and he doesn't, and I wind up an asthmatic who can't plug in her nebulizer which runs on electricity, or cook food on her electric stove, or heat/ventilate her bathroom, or refrigerate her insulins... you see what I am getting at here?
Anyway, so moving on, I have swollen up even more. I am very nearly 260lbs now, despite the fact that I have been pushing and pushing and pushing myself all of the time. I walk as much as I can, and thensome. I don't eat all that much. I just don't get it.
I am in so much pain. My legs are getting worse, I not only can't nend them, but I can't extend them fully either. I wake up with my face swollen- moonface. My toes are so swollen that they have their own rolls over themselves and cut off their own circulation, as crazy as that sounds. It is not fair. I can't ned down to scratch. There is so much that I can't do.
I am scared.
Tuesday, May 26, 2009
Briefly...
Still no word from the PCP.
Now I am getting shut-off notices from the electric company because he clearly did not send the fax that I practically wrote for him and brought to him several times and confirmed with him, several times, in person, with witnesses, that he has in fact, sent the information to them.
(The information being that I am chronically ill and need my electricity no matter what.)
Last Saturday morning, very early, I got a big black line in my left eye. It then turned into two, and then into two lines of dots. I was alone and scared out of my mind. I wound up having to take a taxi to the appropriate medical facility, and after 4 hours or so of pretty much sitting there and choking on my own tears (literally) I was told that there was a lot of blood and that it is because I am a diabetic. I was told that there was no other possible explanation and that I needed to go home and wait for teh Retina Department to call me on Monday.
Monday rolled around and the phone rang. It was the right place, asking for the wrong person, and stuttering badly while doing so. I explained that she was calling me and not the other person, but that I was expecting a call, and was told that someone would be calling "any second" to schedule my retina appointment. I let over half an hour pass and I called my retina doc's office and found that they knew nothing about Saturday's situation. I was immediately scheduled for an appointment the upcoming Wednesday, which I went to.
I do have bleeding, but they don't like the way the doc in the ED handled it. I do need more laser surgery and that starts tomorrow. We are starting with the right eye to give the left eye some time to do some self-healing. The left eye will be in a couple of weeks.
This whole thing has my nerves at their very end.
I am also swelling more. I have been as active (and more active) as possible in my extremely painful condition, I don't eat much, and yet I still gain weight and it is ALL swelling- it isn't fat. I know fat. I have been fat. I'd have no damn problem if I were fatfat and it was my own doing. THIS IS DIFFERENT. I can NOT MOVE. It hurts. I can't cross my legs. I can't bend my legs up to put my socks on. I have trouble dressing and undressing and doing day to day things. My life is being severely altered and nobody seems to care to want to find out what the hell is going on.
Now I am getting shut-off notices from the electric company because he clearly did not send the fax that I practically wrote for him and brought to him several times and confirmed with him, several times, in person, with witnesses, that he has in fact, sent the information to them.
(The information being that I am chronically ill and need my electricity no matter what.)
Last Saturday morning, very early, I got a big black line in my left eye. It then turned into two, and then into two lines of dots. I was alone and scared out of my mind. I wound up having to take a taxi to the appropriate medical facility, and after 4 hours or so of pretty much sitting there and choking on my own tears (literally) I was told that there was a lot of blood and that it is because I am a diabetic. I was told that there was no other possible explanation and that I needed to go home and wait for teh Retina Department to call me on Monday.
Monday rolled around and the phone rang. It was the right place, asking for the wrong person, and stuttering badly while doing so. I explained that she was calling me and not the other person, but that I was expecting a call, and was told that someone would be calling "any second" to schedule my retina appointment. I let over half an hour pass and I called my retina doc's office and found that they knew nothing about Saturday's situation. I was immediately scheduled for an appointment the upcoming Wednesday, which I went to.
I do have bleeding, but they don't like the way the doc in the ED handled it. I do need more laser surgery and that starts tomorrow. We are starting with the right eye to give the left eye some time to do some self-healing. The left eye will be in a couple of weeks.
This whole thing has my nerves at their very end.
I am also swelling more. I have been as active (and more active) as possible in my extremely painful condition, I don't eat much, and yet I still gain weight and it is ALL swelling- it isn't fat. I know fat. I have been fat. I'd have no damn problem if I were fatfat and it was my own doing. THIS IS DIFFERENT. I can NOT MOVE. It hurts. I can't cross my legs. I can't bend my legs up to put my socks on. I have trouble dressing and undressing and doing day to day things. My life is being severely altered and nobody seems to care to want to find out what the hell is going on.
Thursday, May 14, 2009
Okay because my life needs more confusion...
I don't think I mentioned that on my most recent appointment wit my PCP (April 27th) my mother had to take me what with the being very swollen and the eye surgery 2 days prior and the still being in pain from the car accident where the airbags didn't deploy.... anyway, some other people also came along because they didn't really have a choice.
The nurse/secretary was NOT happy about this and was rude and nasty and allowed me in for my noon appointment at nearly 2pm (while keeping a 10 month old and a woman with MS waiting with me) The PCP supposedly swabbed me to check for MRSA, but I have not received any results, nor have I been able to get taken off hold to get any answers (this woman is the only person who handles anything, it seems)
So on the 12th of May, I got a piece of mail from a collection agency supposedly about a bill for $34 from the PCP. I had never gotten a bill, nor should I, because I am insured, and disabled. There was no "date of service" on the bill and the agency did not answer, and had a fake v oicemail. Ironically enough, the agency number and the PCP number are only one digit off...hrmmmm....
Anyway, on the 13th of May, I got a hand-addressed envelope from the Dr.;s office and inside was a bright orange paper that said it was a notice of small claims trial to be filed within 30 days if I didn't pay the $34. Let me tell you, I am NOT paying the money. I do not owe it, and I was never sent an actual BILL, so they can spend the well-more-than-34-dollars it will cost them to take my disabled ass to court so I can watch them lose.
I called and had the doctor paged and asked him what was going on, and he stated that he would find out and let me know what was going on tomorrow, which would be today, and given that it is 7:11pm now I am fairly certain he isn't going to do jack shit.
I am going to have to type up a letter and send it certified and get this matter addressed. The whole thing is just ridiculous.
On Tuesday (I think) I get to travel for like 5 hours on public transit to pee in a cup and come back home. Such a good use of my time...
I would really like to know what is going on with the tests that they took while I was at my appointment on the 5th of May. Nothing accute doesn't mean nothing to report. I need to know what is going on and it is my damn right to know what is going on.
I actually left a voicemail with Johns Hopkins Hospital at 12:48am last night/this morning because I am that damn desperate for answers. I left another one today. How would I get to Baltimore if they thought they could actually do something? I have no idea, but I will cross that bridge if and when I ever get to it.
The nurse/secretary was NOT happy about this and was rude and nasty and allowed me in for my noon appointment at nearly 2pm (while keeping a 10 month old and a woman with MS waiting with me) The PCP supposedly swabbed me to check for MRSA, but I have not received any results, nor have I been able to get taken off hold to get any answers (this woman is the only person who handles anything, it seems)
So on the 12th of May, I got a piece of mail from a collection agency supposedly about a bill for $34 from the PCP. I had never gotten a bill, nor should I, because I am insured, and disabled. There was no "date of service" on the bill and the agency did not answer, and had a fake v oicemail. Ironically enough, the agency number and the PCP number are only one digit off...hrmmmm....
Anyway, on the 13th of May, I got a hand-addressed envelope from the Dr.;s office and inside was a bright orange paper that said it was a notice of small claims trial to be filed within 30 days if I didn't pay the $34. Let me tell you, I am NOT paying the money. I do not owe it, and I was never sent an actual BILL, so they can spend the well-more-than-34-dollars it will cost them to take my disabled ass to court so I can watch them lose.
I called and had the doctor paged and asked him what was going on, and he stated that he would find out and let me know what was going on tomorrow, which would be today, and given that it is 7:11pm now I am fairly certain he isn't going to do jack shit.
I am going to have to type up a letter and send it certified and get this matter addressed. The whole thing is just ridiculous.
On Tuesday (I think) I get to travel for like 5 hours on public transit to pee in a cup and come back home. Such a good use of my time...
I would really like to know what is going on with the tests that they took while I was at my appointment on the 5th of May. Nothing accute doesn't mean nothing to report. I need to know what is going on and it is my damn right to know what is going on.
I actually left a voicemail with Johns Hopkins Hospital at 12:48am last night/this morning because I am that damn desperate for answers. I left another one today. How would I get to Baltimore if they thought they could actually do something? I have no idea, but I will cross that bridge if and when I ever get to it.
Tuesday, May 12, 2009
I don't even know what to say.
I was diagnosed over the phone by some "renal fellow" with Lupus a couple of weeks ago (oh, and this was five minute before going on stage for a final dress rehearsal- nice huh?) After many back and forth phone calls, I spoke to my actual renal specialist who said that I do still have a positive ANA, but that it was not a Lupus diagnosis.
She'd tested for many things, and after having me off of the Actos and the Diovan for a month or so, there was protein and blood in the urine (24 hour) and it was still there when she tested it when I had an office visit on the 5th of May. I had more blood work done, including a repeat of the ANA and I have to go back next week for another urine test.
She did tell me to go back on the Diovan and Actos to see if that would remove the protein from the urine, as this is a sign of diabetic kidney failure, apparently. Great.
She wants me to see an Endocrinologist, and since being seen (in renal) on the 5th I have not heard from them or been able to get through to get an appointment.
I did try to get one schedule while I was there, as the doctor said that he secretaries were SUPPOSED to do that, but they are actually all very rude, nasty women and just said "they'll call you!" and shoved me out the door almost literally.
I have been very, very swollen and in a lot of pain.
I have maintained at about 248lbs for a while now, but that is still terrible and painful and the breathing has been not so great too.
I need a DIAGNOSIS, not treatment of symptoms. I have had little to no treatment anyway, but the treatment I have had has done nothing. I need real help, and I do not know where to turn.
She'd tested for many things, and after having me off of the Actos and the Diovan for a month or so, there was protein and blood in the urine (24 hour) and it was still there when she tested it when I had an office visit on the 5th of May. I had more blood work done, including a repeat of the ANA and I have to go back next week for another urine test.
She did tell me to go back on the Diovan and Actos to see if that would remove the protein from the urine, as this is a sign of diabetic kidney failure, apparently. Great.
She wants me to see an Endocrinologist, and since being seen (in renal) on the 5th I have not heard from them or been able to get through to get an appointment.
I did try to get one schedule while I was there, as the doctor said that he secretaries were SUPPOSED to do that, but they are actually all very rude, nasty women and just said "they'll call you!" and shoved me out the door almost literally.
I have been very, very swollen and in a lot of pain.
I have maintained at about 248lbs for a while now, but that is still terrible and painful and the breathing has been not so great too.
I need a DIAGNOSIS, not treatment of symptoms. I have had little to no treatment anyway, but the treatment I have had has done nothing. I need real help, and I do not know where to turn.
Subscribe to:
Posts (Atom)