Sunday, December 26, 2010

Long day, Wednesday was!

On Wednesday, I went to the retina doc's office for a follow-up to the surgery I had on my left eye last Thursday. I was told that things look as they should. (Mind, this doesn't mean that I can see any better just yet, but that there is no more blood and the hole they needed to cut was done so successfully.)

From there, I scurried to another hospital, where I was to meet the guy who took over the role of "PCP" in July, but whom I had never met. I had a brief wait, but nothing too bad. I met him, and was pretty shocked to find that he'd actually read my chart and therefore actually knew about my case. He was very nice, and I think that my former PCP made a good call in suggesting him when she left that hospital. We shall see. I am optimistic. The nurse in the office couldn't get a vein for a blood draw, so I had to go to the lab, which was a longer wait, but what can you do, right?

After that, I had 4 hours until I was supposed to go in for the MRI on my foot, which they so KINDLY called me on Tuesday evening to tell me that I was scheduled for 9:15pm on Wednesday. Ugh. I went from the blood lab, to the MRI department and explained that I was 4 hours early, but if there was any way to squeeze me in, that would be great, since I couldn't go home and come back due to the 2+hour commute via public transit each way. They said they would see what they could do, and actually took me in relatively quickly. It was a long procedure, and getting the IV in for contrast (which I was not told I would be getting) was a challenge, but they finally got it, and I was out of the hospital by about 7:30pm.

The foot doctor's office left me a voicemail at the crack of dawn on Thursday, asking if I could come in on Monday, instead of January 6th. but they didn't leave a time. I called back and left a message, saying "Sure, but you didn't tell me what time. It takes me 2+ h ours to get there, so I need at least 4 hours notice, please call me back." I called twice on Thursday, and once on Friday. On Friday, the lady had changed her message to "We are closed for the holiday. We re-open on Monday." I left her a message saying "Well, if you changed your greeting, you have clearly checked your messages and know that you didn't tell me what time to be there, and I still need to know, if it is going to happen." and now, we are having a blizzard, so I certainly won't be busting my ass to get there at any point. What a pain.

Tuesday, December 14, 2010

Well, that was fun...

I was taken in about 45 minutes late for my kidney appointment, and then had to wait a while for the actual doctor to come in. Still not as long as my usual wait, but then, with my pain being isolated to my upper left back and circling around to my chest, he sent me for labs and for an x-ray of my chest. That took forever.
In between, I went to the foot doctor's office to see what was going on with that "urgent" MRI that was supposed to be scheduled 2 weeks ago. I found out, after some waiting, that it hadn't been ordered. This would have been SLIGHTLY more acceptable had I not called 3-4 times over the past 2 weeks about said MRI. Now I have to "give it a couple of days" to even have them start trying to schedule it. Great.
Got blood work done. So many of those people smelled like stake booze and cigars. Not good when you can't breathe. Then, the radiology department smelled like subway urine. Really. I probably just made up that term, "subway urine" but really, it fits.

I am still not feeling well. I don't feel "sick" but I am in a lot of pain and a bit dizzy.
I am having double surgery on my left eye on Thursday. Hopefully this will help at least with the latter.

It is cold. I don't deal well with cold. My blood sugars have been decent, just have to prick my fingers at least 4 times to get any dang blood out of them when I am cold. Ah well.


i am sitting and waiting for the kidney doc. half an hour past my appointment time already. blood sugar is dipping. i have to go see about the foot mri when i am done here. i am in so much pain. so depressed.

Friday, December 3, 2010

So tired.

I really don't even know what to say.
I am exhausted, run down.
I feel like giving up, most of the time.
The pain is high and the treatment is non-existent.
I do the best I can, but I hurt everywhere, including my SKIN... and I feel like I am swelling again, which is painful and makes moving in any way very difficult.
Yesterday, I found out that I have a "plantar fibroma" on my right foot, and I need to have an MRI, which may indicate that I need surgery.
It is painful. I brought it up a month ago and the doc couldn't feel it (though he didn't actually try very hard) and yesterday, he could. They are supposed to call me with an MRI date. We shall see.
Other than that... just plugging along as best I can. Doing my best to keep my head up.

Wednesday, November 17, 2010


So let's see... I don't even know where to begin, but then, what else is new, right?

On the 8th, I went to the ER at the eye doctor's, and they confirmed that I have new bleeding in the left eye. They also confirmed that my sore throat was somehow related to the near-fall I took during the Sunday matinee of my show. o.O

I was told to see my retina doc ASAP. That day was today, but we'll get back to that in a bit.

I went to a neurology appointment which was scheduled without my knowledge a while ago, and was prescribed Neurontin for insomnia. Neurontin is NOT an insomnia medicine, but I figured "why not?" since it is for nerve pain, which I have, and should help me sleep.

I was given the script and told to move from 1-3 pills per night. I started at 1 pill, and I felt like crap, but I really thought that I just felt like crap because I was run down from the show, so I didn't think much of it. That is, until I tool TWO pills. I took 2 at about 10:30/11pm on Monday night. I went to bed shortly thereafter, but didn't get to sleep til 5am, then barely slept, but remained awake, shaking, and in pain til I was finally able to get myself out of bed at about 2:30pm. I almost fell on my face. Then, I almost fell on my face. After that, I almost fell on my face. I tested my blood sugar: 99. Okay, not the diabetes. I drank coconut milk and ate a banana. Still dizzy, not the potassium level.

I called the neurologist's office, and a page was put in to him as a "Priority One" and I was to receive a call back "within the hour". This was at 4:50pm. At 7pm, my mother arrived to take me to the ER at the hospital that this neuro practices at. I also mentioned the fact that I have had a headache non-stop for about a month, in case that has anything to do with it. I was triaged and taken back fairly quickly, where they immediately started trying to get blood and get an IV-line in. They of course found out that I am a hard stick, and wound up having to use ULTRASOUND to find a vein... and had trouble even with that.

Anyway, labs were pretty good, save for some "slight dehydration" which surprised me since I drink a lot, but they said that it was probably just due to the fact that I am on 2 water pills. They gave me fluids by IV, did a head CT, which came back normal, and then they gave me Tramadol orally and Compazine via the IV.

The neurology people were a bit surprised when I told them about the Neurontin. They all but called teh doc who prescribed it nutso. They suggested trying Cymbalta daily and Ultram when needed. I need to read up on these things. We shall see. They ER folks said that I need to follow up with neuro within 2 weeks.

So, I went to the retina doc today, and they say that some of the new bleeding has resolved on its own, but that I should come in for some laser surgeries withing the next couple of weeks. I need one tyoe to help with the bleeding, and one type to help with some post-op stuff that has developed behind the artificial lens. Wheeeee.

While I was waiting to leave the eye appointment, I figured I would call the neurology department to book this appointment that I need to have within 2 weeks.
The conversation went something like this:
THEM: Hi, thanks for calling neurology, please hold while we play you some crappy music and pretend that someone on this end is actually doing something.
ME: waits
THEM: Thanks for holding, your call is very important to us. Please continue to hold.
ME: waits
(this continues for 7 minutes)
THEM: Neurolohymumblemumbleblahblahrgh?
ME: Hello?
THEM: Can I HELP you?
Me: Yes, this is me, I am a patient of Doctorguy, and was in the ER last night and they told me I need to see Doctorguy within 2 weeks, I'd like to make an appointment.
THEM: Hang on.
ME: waits for 3 minutes or so
THEM: Can I help you?
ME: repeats the above
THEM: Social or medical record number.
ME: gives MRN
THEM: Hold on
ME: waits a few more minutes
THEM: Who I'm speakin' wif?
ME: This... is me.
THEM: That patient already has an appointment with Doctorguy.
ME: Right... *I* have an appointment scheduled for February, but the ER said I need to have an appointment within two weeks.
THEM: Hold on.
ME: waits again
THEM: Can I help you?
ME: This is me, I am a patient of Doctoryguy and was in the ER last night and they said I need to come in WITHIN TWO WEEKS. I don't see why this is such a hard concept to grasp.
THEM: We can give you an appointment on January 17th.
ME: I. Need. An. Appointment. Within. Two. Weeks. Are. You. Smoking. Crack?
THEM: January 17th is the soonest we can give you unless you want December 16th.
ME: Well, I don't know what calendar YOU use, but for me, December 16th is closer t o 2 weeks from now than January 17th is, but I wanted one within 2 weeks.
THEM: We're booking into January.
ME: The ER said I need to be seen within 2 weeks, and YOU just said you have a date in December.
THEM: Right.
ME: (who's on first?) Just give me the December date since you aren't even trying to brain today.
THEM: Okay.
ME: It's all set then, for that date?
THEM: Bye.
ME: I asked you a question.
THEM: What.
ME: Am I all set for that day or do you need any further info?
THEM: Yeah.

Clearly, I need a new neuro. The one and only appointment I had with him, I was taken in 2.5 hours late for, then his office gave me the royal run-around, then he did not answer a PRIORITY ONE page until 5:50pm, which was more than 24 hours after said page went out.

Yeah... he answered. He called at 5:50pm. He didn't sound the least bit concerned, and there was no hint of any sort of apology for the lateness of his reply.

You know what he DID do though? He said "So, did I poison you?"


"So, did I poison you?" Yes, you read that correctly.

Yes, I need a new neurologist, right away.

Friday, November 12, 2010

I guess it has been a while again...

I have been busy.
I have felt like hell, but have had good people around, so that helps.
I have definitely over-extended myself to a degree, but I am trying.
I went to a neurologist last week-ish, and he put me on Neurontin (Gabapentin) at night.
I am not quite sure what to make of it yet.
Sometimes over the past few days, I have felt like I am swelling up again. I am not really sure where my weight is at right now, because I have a digital scale and the battery died.
I need to pick up a 3 volt battery at some point.

My endocrinologist figured out that I had been given the wrong chart of insulin doses. That is why my sugars were high and my A1C took a hike. That has been fixed now and I am trying to get things evened out.

I am too tired to write more right now. I need to finish my laundry and get ready for the show.

Thursday, October 28, 2010


I am so worn out.
I don't even know where to begin.
I have been going non-stop for well over a month now, and mostly it is a case of having my time occupied and me being relatively happy... but then there are the parts that are just... horrible.

My stress level has gone through the roof over the past few days, and it isn't even over anything I have control over, and is actually someone elses' fau;t altogether.

That doesn't mean that the big bang of the stress itself doesn't come down on my head.

Hopefully, I will be able to figure things out soon. Til then, I am just doing my best to make the best of things/keep my chin up and all that jazz.

Grateful that I have castmates around me who are awesome.

Tuesday, October 26, 2010


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...

Tuesday, October 5, 2010

I'm taking the time for a number of things that weren't important yesterday.

(and I still gooooo....)

Anyway.. so let's see... I called both the kidney doc and the GI doc again on Tuesday morning and finally got a call from the kidney doc the SECOND I was on my way out the door to go to rehearsal.
I spoke to him for a few, got some questions answered, I guess. Still no word from the GI doc. NOt my phone nor by mail. Pretty terrible, if you ask me.

On Monday, I left a voicemail for my endocrinologist because for several weeks, despite not eating much at all, and taking my insulin, I have not been able to get my blood sugar below 300, and usually it's much higher. This is not good. I feel mostly "okay" (for me, anyway) so I don't know what is causing this or how to stop it.

According to my kidney doc, my A1C took a hike- I jumped from 8.5, which was a record low, to 9.8. This scares the living daylights out of me.

My creatinine is 1.2, which apparently means that (at the time the blood was taken, at least) my kidney function is functioning at 70%, which is up from 44% and is an improvement. He looked at the results he could see from the GI doc, and confirmed the focal nodular dysplasia, and said that I don't have Hepatitis (duh) and that my "anemia is fine" the "protein is perfect" and iron tests are negative, which is apparently a good thing. He did note the A1C, as previously mentioned, and that my white count is elevated.. but they didn't call on that, so I don't know if it's "elevated like it usually is" or "elevated and needs to be looked into" Hopefully my endocrinologist calls me back so we can deal with this. I am really sick of being dehydrated 24/7 and I feel like I am swelling again. I have maintained a weight under 230 for a month at least, but I don't seem to be losing any more, which bothers me, since I am not eating all that much and being active and taking all of my meds.

Tomorrow...err... today I have a retina follow up. I have nobody to take me/pick me up, so that will suck, mostly due to the long commute and the fact that I will be even more visually impaired when I get out... and it's supposed to rain a lot and my rain coast seems to not be waterproof anymore.

On a brighter note, this is the first time I have made it to a follow-up retina appointment without an ER trip in the middle. Yay!

Sunday, October 3, 2010

Oh look, I am up at 4am!

Big surprise, I know. You're in a state of shock.
I will give you a moment to compose yourself.

No word from any docs, save for a reminder that I see the retina doc on Wednesday.

I've been pushing myself. I have been walking, and doing things and still it seems that I am having some swelling issues. My ankles are more visible than they were a year ago, but really.. this is ridiculous.

I have requested info on getting into an "unknown illnesses" program out of state. I have to get some papers filled out, and it can take a few months to find out of I am in or not, but I figure it is worth a shot.

I am just so sick of it.

Tuesday, September 28, 2010

Still no word.

No word on the blood work from the kidney doc nor the GI doc.
I have called both clinics and received no call backs.
I am more than slightly irked by this. I called again today, once to GI and twice to kidney.
I also called the diabetes nurse because I need a couple of refills and because when I went to picl up my test strips the other day, I was told that insurance does not cover them. I certainly can't afford to buy them outright, and they were covered before and my insurance hasn't changed, so this makes no sense whatsoever.

In other news, my left eye seems a little better than it was before. I can't see a LOT, but I can see shapes, which is more than I could see when I went into the retina office before. I have a follow-up at the beginning of next month for that.

Tuesday, September 14, 2010

A longer update.

I didn't get much sleep, as per norm. I spent a good deal of the wee morning hours on the phone with a friend of mine whom I'd been urging to go to the hospital for a while to get some pretty scary symptoms checked out. He finally took my advice, and thankfully, is mostly fine.

I slept for about 4 hours, having some VERY odd dreams in the midst of it.

Woke up to a call from the retina doc's office before 9am to reschedule my follow-up. Tried to get back to sleep for a bit, more dreams. Got up, took meds, showered, dressed, hauled ass to catch the bus.

Went to the dietitian's office, arriving at about 1pm for my 1:40pm appointment. I was taken in early, and praised for losing 16lbs since last I saw her, and for my full-point A1C drop, and, as expected, reprimanded because I have (excuse me, HAD) not tested my blood sugar for a week. I WAS, HOWEVER, HONEST ABOUT IT. I still brought my meter with me, ready to show it.

Truth is, I have been VERY depressed since my oncology appointment on Tuesday. Testing just wasn't a priority, because I have not been eating. I know. I know. Don't lecture me.I couldn't. I was mostly physically incapable of it.

So I got upstairs for my 2:15pm kidney appointment (with the new doctor) at 1:30ish. I told the woman at the front desk that I had another appointment in another building across campus at 4pm, so did she know if he was running on time, etc. She very confidently told me that I should be seen very close to on time. At 3pm, I went up and asked her nicely and quietly to check on things, and also advised her that if they wanted a urine sample, they needed to get on that RIGHT NOW because I wasn't waiting.

She came back about 10 minutes later with a cup and some wipey things. *sigh*

Before I went to the lav, I was told that I was next. When I returned (very shortly) there were 3 people missing, and then 3 more got called in. I asked again what was going on, and noted that I HAD TO LEAVE by 3:30pm. I was told I was next, and I told her she told me that a half an hour ago, which was already 45 minutes after my appointment time. She calls the girl from the back, who proceeds to mention that I am "not listed as being here" Ahem.

At this point, my patience is gone.

I raised my voice and held up the cup I'd been holding and said "You know, if I wasn't fucking here, I wouldn't be able to open this jar of piss and throw it in your fucking face. This lady registered me at 1:30pm. I saw her. I've been here, and you have seen me. You asked me my fucking name an hour ago, if I wasn't on the list then, you should have dealt with it then. Once again, jar of piss... your face... do we have an understanding?" She laughed as if I was joking. I stood up and started removing the paper towel from around the jar. She left.

The nurse (him, I like, he just wasn't around before) came out. He told me that he was working on it and asked for the name of the doc I was seeing and came back to get me into a room a few minutes later. At about 3:30, he brought me back, took my vitals and weight and told me the doc would be right in.

I hear a knock on the door, and a man with full braces and elastics walks in. I am sitting in a chair, with my right leg up on the foot far of the exam table. I am ALL attitude. He smiles, apologizes, and tells me that I should nag him because he "can just talk and talk forever" This actually set my mind at ease a little, because if he can talk, I figure he can explain things, in detail, which I need right now, and also listen. Now, when he heard about the crazy shit that happened with the 100lbs in 3 days thing... he... I think he is the first person EVER who didn't look at me like I had 12 heads, and NOT just because he read my chart beforehand (but, HE READ MY FUCKING CHART!!!!!!!!!!) He actually gave me a name of what it might be. Of course, I don't remember what it was...I plan to call about that tomorrow. Its a start. He did inform me that my kidneys are functioning at less than 50%, but he also said that as long as it doesn't get worse than it is now, I should be fine. He explained that I do have diabetic kidney disease, but I don't JUST have diabetic kidney disease, I have a...non-diabetic one too. He ordered a shit ton of bloodwork, but he gave me the papers, and told me to bring it with me to the other building, see the GI doc FIRST, and that way I'd (hopefully) only get stuck once if GI guy wanted more tests. He told me to come back in 3 months, unless something happens with the bloodwork, in which case he will call me, and (because it came up in discussion about how I keep active) told me to e-mail him if I am in any shows before I see him again, haha! (Turns out that my Awesome Aussie doctor- I think he's Australian, I hope so, because Awesome Aussie is a better nickname than Twatwaffle, is apparently the black sheep of his family. They are all artists and were awestruck when he wanted to be a doctor)

So I go to the GI doc. I am filling out the new patient paperwork when the aide comes out and asks for "MISTER LASTNAME" (I was the ONLY one in the waiting room. I thing I may have caused bleeding in her head with the daggers that shot from my eyes. I didn't say a word, I got up, she apologized, and I laughed and I said "It's not so uncommon, it's just REALLY bad timing" and I laughed, and I think she spent the next 10 minutes apologizing, and I told her "Hey, at least you didn't ask me if I am related to Dr. Lastname!"

I got put in a room, and a short time later, a very old man comes in, and starts basically telling me everything I *don't* have... all of which is misinformation because he didn't look at the paperwork I just spent all that time filling out.

He tries to convince me that I was 12 when I was diagnosed with diabetes, and therefore I do NOT have juvenile onset diabetes. FACT: I was NOT 12 years old in October of 1987, and even if I was, I am still Type I. (and also, this has nothing to do with the reason I am there which was the mass on my liver)

I have told him 4 times that I do NOT smoke, and he asks me if I have a cough from the smoking. *headdesk*

He asks if I have any questions. Finally. I said "Well, I am pretty freaked out by the liver thing..." and he says "What? Why? You should be happy about it!"

*blinkblink* What?! I was under the impression that I have cancer, and that the additional tests I have to have done for it could kill me.

He explains that... lemme find where I wrote this down... "You do not have cancer. We are not going to do a biopsy at this time because thee is absolutely no need. You need to have it re-checked regularly, and by regularly I mean every year or so. If you do 2 years in a row and there is no change, you can go to every three years. You have Focal Nudular Dysplasia. It CAN become cancer, but it is VERY rare. You don't need a follow-up appointment with me unless there is something off with the bloodwork."

Off to the blood lab, where I was the only one there, and yet still had to wait a half an hour to get poked, and then... they took 12 pretty hefty sized viles of blood. At first, the girl drawing me didn't realize that he colleague had set the viles out for her, so there were 24 of them and I nearly fainted before a needle came anywhere near me. (Oh, hi, haven't eaten much....) Finally, I am done, and head for the bus stop, with only FOOD on my mind.

I went and got some food, and then proceeded to rehearsal. (Yes, I was cast in the show I auditioned for 3 hours after being "diagnosed" with cancer.)

OH!! And during rehearsal, I had to scratch my right eye, and and and *bounce* guess what? *bounce* I could see the outline of the accompanist playing the piano with my left eye!!! *bouncebounce*

I am scheduled to see the retina doc during the first week of October. I have a few questions, and am not sure if I might be brought in earlier than that or not, but we shall see (no pun intended).

Tuesday, September 7, 2010

Well, I wasn't expecting that...

You would think that if you have a big test done and something VERY SERIOUS comes as a result, that a physician would CALL a patient, not wait for their appointment, take them in an HOUR late, and then ask "How are you doing?" and when the response is "Nervous", just say "Yup" confirming that there is a good reason to be so.


I still went to my audition.
I bombed on a song I can sing like its nobody's business.

I'm not done processing this yet.

Wednesday, August 25, 2010

So basically, I have permission to blame my father for everything.

It isn't quite that simple, really... but being assured that this isn't MY fault was a good thing at the time. Yeah.

So I went to the retina doc today, a follow-up to my ER visit on the 17th, where I found out I was "bleeding again" (see previous entry)
When I got there, I went to see the nurse, when called in, which is routine- vision check, pressure check, drug-list check, all that fun stuff.
First comes the right eye. Pretty good, about the same as before- nothing special.
Then, I cover my right eye to test the left.
Not I- can't- see- the- letters- but- I- can- see- the- white- square- they- are- on... just NOTHING. Not a single thing. I see the spots inside my eye, and I see grey-white fog.
She got a board with letters on it and held it closer to my face.
Waved her hands.
I saw a TINY bit of movement when her hand was maybe 6 inches from my face.
I burst into hysterics. I couldn't help it.
The resident, when I saw her, said "Umm, I can't see in there. There's too much blood. Like, a lot I can't see anything. Its all blood." Which, of course, did not calm me down. I lamented about how upset my mother is going to be, I am a burden again. Still. More. Again. Burden. She's going to kill me. The resident told me, flat out, "You can not blame yourself for this. This is NOT your fault. You could not do anything to prevent this, really, and you did NOT do anything to cause this. It isn't your fault, it is genetics. Blame the one who gave you the diabetes."

That did help, a little. Sort of.
My doc came in, and basically said the same thing- he couldn't see anything, and was really shocked that this is happening in so drastic a matter so soon after surgery.
He sent me for an immediate ultrasound. This was the only way we could tell if the retina had detached or not.
The retina is still intact, at this point. This is good.
The bad thing is that I basically have to wait-and-see (or not see, as the case may be)...
I go back in a month, barring any more disasters, and if things are not better, I get an Avastin injection, followed by laser, if the Avastin works.
I also got a call (automated) from the Hematology office AT 7PM saying that I have an appointment at the beginning of next week at the asscrack of dawn. I can't possibly get there. The buses don't start running that early. I called, and of course got the answering service, and told them to leave a message because I STILL haven't heard from anyone about my "abnormal" ultrasound. I was given quite the attitude and told I should call during business hours. I told the gal that I have done that 5 times and gone in in person twice and got NOTHING, so to leave a message for them to call. She paged, and the DOC told me to call during business hours.
At that point, I told the lady "Okay, but please make a note on my account that I have called many times and NEED to talk to someone soon. You can tell them I am being a bitch. Really. Do it. I give you permission to call me every name in the book- JUST MAKE HER CALL!" Here's hoping she calls in the morning or something.

After all of that, I went and toured a gym. I have a week's free pass, starting on Monday. After that, it is $100 a month, so there is no way I can afford that. Here's hoping I can at least learn some stuff during my week!
I also went to check out some live music with a friend, which was a very last-minute thing, but most definitely welcome. Good music, good people, good times. Yay.

My weight... eh. I don't know. It has dropped a little. Not as much as I would like, but its a start. I am under 230. Just barely, but I feel more mobile, and just hope that the weight stays off and keeps shrinking. I don't mind being big, but a balloon is a whole different story.

Saturday, August 21, 2010

Well, not so much now...

I had the ultrasound. There is something on my liver. I require further testing, and the hematologist STILL has not gotten in touch with me to tell me what is actually going on.
I went into the office in person to ask for a call, and I have called. NOTHING. I am not happy about this.

I wound up in the ER at the place I had my surgery the other day. Ears & throat killing me, and lots of black spots in my left eye along with a headache behind my left eye. Turns out I am bleeding again in the left eye. I have to see the retina specialist on Wednesday afternoon.

I should probably write more, but it is almost 5am and I haven't slept yet. I might want to try that soon.

Thursday, August 5, 2010

Still moving along..

I have not been sleeping much. This isn't really "news", but at the same time it is getting worse, so I am a bit concerned. I am in a lot of pain.
Yesterday I took m y last dose of the steroid drop I was being tapered off of for my eye, and I still have not heard from the retina doc, and I am supposed to see him before the end of next week. It is annoying to say the very least.
I did fairly well, physically on Tuesday, I think it was.. I don't really remember. There was one day this week that I did a lot of walking, and didn't get too winded, so that is good.
I remain as active as possible, but I might want to think of actually sitting down when I am not on the stage, because man, does my back hurt. Everything hurts, but yeah.
Anyway, I think I like the Symlin.
I don't like the way the 2 antibiotics I am on make me feel, but I am dealing with it as best I can.
I am thoroughly exhausted of being a human water balloon.
My self-esteem is the lowest it has been in ages. I wish I could change that.
I have an ultrasound next week, and I am nervous as all get-out about it.
This hematologist... she seems really good, and explains things, which is great... but I still have that little voice inside of my head that reminds me that it was a hematologist who found the tumor on my liver in the first place, and if I am being scanned because it may well not be benign anymore.. well, that's just really scary.
I am trying to stay positive, I really am.
I am just so sick of being sick.

Monday, August 2, 2010

Can't sleep.

I can't sleep. I'm watching the Sir Paul McCartney/White HouseNGershwin Award thing on PBS. It is pretty awesome.

I had to go to the ER at the place I had surgery again on Saturday, because I had extreme pain and flashes of light. Basically, the stitches are poking through and causing pain, and there is not much I can so besides keep using the ointment and hope it feels better. It hurts to even move my eye.

Before I went to the ER, I had a regular appointment with my PCP. Had to do the urine again because they didn't actually send the culture to her from the lab for some reason. She said her GUESS about the continued abdominal pain is diverticulitis, and prescribed cipro (which we have to see if I am resistant or not to...) and flagyl. Thing is, that after 11 years of being my PCP, this was her very last day at the place I've been going to see her. I am supposed to check in with her in a few days to let her know if the antibiotics made the pain go away. I have her e-mail address for that. She had recommended a colleague of hers to be my new PCP, whom she thinks will be a good match for me. I told her I was willing to give it a try.

Time will tell.

Man, I need sleep. It is almost 5:30am.

Tuesday, July 27, 2010


So my gyn said that he was at a loss. He said that the ultrasound was clear, but that my white count was elevated. He said to call my PCP, because he doesn't think its anything on the gyn end of things, but to keep him posted.
I called my PCP, and was supposed to go in to give a urine specimen on Saturday, but didn't realize that they closed at 11:30am, so I didn't get to. (This was to test for resistance to Cipro.)

Saturday and Sunday I woke up with pain in my surgical eye worse than it had been. On Saturday it got better (sort of) after a while, so on Sunday I tried to ignore the pain, and went to an audition. I went right from the audition to the ER at the place I had my surgery.
The (seemingly new, young) doctor applied fluroscein to my eyes, not realizing I am allergic to it (even though we went over my allergies twice..) and I had a reaction. I was treated with Benedryl and am fine, but they wouldn't let me leave on my own, so I had to call for a ride. (Oh, and the diagnosis was that I scratched my cornea. I guess not having an ointment to apply makes the eye dry out at night and it tore just from opening my eye.) Erythromycin(sp?) ointment was prescribed, as well as instructions to see the retina doc in 2 weeks, and continue the tapering of the Tobramycin(sp?).

Today, I had an appointment in the hematology/oncology department.
My white count is still up (finished with the cipro).
Something is "off" with my liver, which made the doc order an ultrasound of my kidneys, liver, and spline, which will be done in a couple of weeks. I might need an MRI or a biopsy.
I don't have leukemia, or any of teh major blood disorders that they tested for, so that's good...

I went over to the PCP's for the urine test, and then left and was wandering around, looked at books in town, got a coffee, wandered some more, and was about to head to my rehearsal when I collapsed. I was taken via ambulance to the hospital. EKG good, bloodsugar great, they did a pelvic exam since I still have the pain in the lower left quadrant. They gave me IV fluids for dehydration, and discharged me.

While I was waiting for the bus, a drunk guy came flying out of nowhere and slammed into the bus shelter and then fell on my feet. I think I jumped out of my skin. He got up, so I moved away and didn't do anything, since he was conscious and moving around and all.

Now I am home, exhausted, and hoping to catch up on some sleep during the day on Wednesday. I may try sleeping without the patch tonight. I haven't decided yet.

Wednesday, July 21, 2010


When my gyn's secretary called this morning, she said she had a cancelation for 1pm and to definitely come in. I got a ride over, gave the gyn the rundown of Monday night and he was mad as hell. He tried to get the ER doc on the phone right then and there. He sent me for bloodwork immediately, and said to come back after. I did and he said to go to my post-op for my eye (I had a 2:30 appointment at a different hospital for that) and come back as soon as humanly possiblewith a very full bladder for an emergency ultrasound.

My post-op, I arrived at 2 and got seen at around 3:30 then raced back to the other hospital hoping not to explode. Tests were done, and I was told to leave, but to call my doc 1st thing in the morning without fail. I am nervous as all get out.

On the plus side, I made it to my rehearsal, which was a much needed break from reality, and much welcomed interaction with other humans.

The vision in my left eye, without my glasses, while still blurry and kind of fisheyelenslike, has gone from 20/400 to 20/ that is good. I still have to not bend, and keep the eye protected (shield) but we have progress.

Progress is good.

Tuesday, July 20, 2010

70 posts later...

I am still sick. I still have no answers. I spent 8 hours in the emergency department last night because all of a sudden, out of nowhere, I got a sharp, stabbing pain in my lower left abdomen. It brought tears to my eyes, so instead of going to the rehearsal I was looking forward to, I went to the hospital.
I am placing this entry via phone, so I won't get into details, but I was discharged, basically sight unseen, with antibiotics and a pill to relieve symptoms of a UTI. I am still in a lot of pain. I have a call in to my gyn, because I think this needs to be addressed by someone in that field, just to be safe.

Also, for the past week, since my surgery, I have spent about 85% of my time away from my home, and I have been slightly healthier in general, and the swelling has gone down some. I really need to look into finding out how to find out if I am allergic to my home. I have never dealt with something like this before. I also wasn't sick like this until I moved to my current residence.

Sunday, July 11, 2010

It's been a long week.

Thursday, I had my pre-surgery testing and physical and then I had the Avastin injection. That was NOT fun. I have had them before, but my left eye has been SO bad lately, it just hurt so much. I asked for Tylenol before I left.
I got an "air bubble" when I stood up, which I guess is fairly common, but no less annoying than you'd think. It basically looked like I had a black spot half the size of my eye.. in my eye, whether it was opened or closed. It seems to have finally broken up a little... just in time for them to slice it open on Tuesday. Ugh.
On Friday, I was up at 4:30am to go to a very early morning radio thing that I won my way into. After that, I came home, ordered a birthday present for a friend of mine, and did some work around the house and crashed for a while before heading to my birthday non-party thingy. Got to see a few friends I haven't seen in ages. That was fun. I do have to be careful with fruity drinks though. It is much harder to keep track when you can't taste the alcohol and you aren't paying. Ha! I had a good night though.
Saturday, I had rehearsal in the afternoon and then went to a house concert at a friend's place. It was amazing, and I think I left somewhere around 1:30am.
It is after 8am now, and I haven't slept... and some friends are picking me up on about an hour to go to some thing out of state.
Not really sure what to expect, but I am just trying to get as much fun/socialization in as possible before the surgery.

Wednesday, July 7, 2010

Tomorrow is going to suck.

I have to wake up at the asscrack of dawn to go to the hospital for pre-surgery-surgery.
I have to have a physical, then some testing (2 kinds) then an injection in my eye, then meet with the secretary, then go to ANOTHER hospital to see the diabetes nurse and the dietitian. Ugh.
Tuesday is the "real" surgery, and I am pretty scared.
Here's hoping I can get this place cleaned up and then have some fun before I become incapacitated again.

Saturday, June 26, 2010

I have to update this thing WAY too often.

I think I might have permanent scars because my kitties like to sit on my lap while I write, which I seem to do a lot. Eh, they mean well.
So as I said before, I met with the bariatric surgeon, and he was... not my kind of doctor, shall we say? The VERY first thing I said to him was "I am not saying I am not fat. I know I am, but I have an excessive amount of fluid that showed up very quickly out of nowhere and I am not convinced that a fat-loss surgery can help, so I need to know why this is a viable option." He went on and on about how the forms that I filled out at the info session prove that I am not a good candidate. Why? Because I spoke my mind in answering their stupid, non-specific-enough questions.
Did/do you have overweight parents? Yes, but they weren't born that way and they aren't the ones being referred over for major surgery. This is MY life, thanks.

Please check the diets and meds on this list you have tried (followed by a list of fad-diets and drugs that have been either recalled or banned) None. I have never taken a weight loss pill or used a fad-diet. I watch what I eat, and I think the fact that I lost 155lbs and kept it off for 2 years and was continuing to lose until this fluid thing happened, proves that I did the right thing.

So yeah, stuff like that. The surgeon kept going back to me being "on the high end of morbidly obese" due to my high BMI, and I kept telling him that the BMI is bullshit because it IS NOT ALL FAT. So he asked if I had a psychiatrist, I said no, but that I had been seeking counseling on a longer-term after I just finished short-term counseling at the (semi) local rape crisis center and that I'd gladly take under advisement anyone he could suggest. To this he said "That's not my job, but I can't help you until you come to terms with the fact that you are simply morbidly obese." He told me to go back to the nutritionist that sent me to him in the first place (mentioned in previous posts) and that he would put me on drugs.
Because that will totally fix everything.
Do you know I see about a million commercials daily for new drugs being recalled, killing people, etc etc? Do you know how many of those I have been put on? It is pretty scary.
Anyway, I do what I can and am VERY active when my body lets me be.
I just finished a 4-week beginner's swing class on Wednesday. On Thursday, I am pretty sure we can count my commute as exercise, since I was wandering around blindly to find the entrance to the train station, and then I was forced to wait for half an hour for the bus in torrential downpours with no jacket and no umbrella in a rather heavy, long dress and then walk a half a mile... I think carrying that extra weight added to my workout....
Friday (yesterday) I went to a city dance party. My friend and I started it up. It was supposed to start at X time, and theer was music, but no people, so we said "screw it" and got in the middle of the street and started dancing and yelling for others to join in. 3 hours straight of non-stop dancing, then a quick bite, then I walked from the store to my friend's house, which I didn't realize was about 2 miles... then stairs... then more dancing.
Normally I wouldn't put that stuff here, but I think that it needs to be documented that I AM an active person. I am sick of these quackpot doctors blaming laziness for my weight.
I walked 6-7 miles the day I turned into a human water balloon.
I have no idea what my cholesterol is like right now. I haven't been able to afford the fish oil capsules. Insurance won't cover natural products. They will only cover the DRUGS, which almost killed me. Wonderful.

Moving right along...
I met with the retina fellow last Friday and he said he thought it was time for a vitrectomy and to follow up with my retina doc soon. I did that on... Wednesday, and he agreed. Not only that, but he said that at the same time as the vitrectomy, he would remove my cataract on the left eye, and put in an implant. Kind of scary... I went for a test in which I had to lay down, have my eyes propped open, water poured on them and left there, and then lights shined through the water. It was rather uncomfortable.
I have to go in for an Avastin injection next week, and pre-op stuff, and then the following week with me my surgery. Man, do I wish I had decent pillows and/or a comfortable couch.

Anyway, I have typed about as much as I can for now. I think that sort of sums up things as they are now.

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.

Wednesday, June 9, 2010

I really don't know.

I am fighting.
Every day, I fight.
I am losing my strength.
Rather, I am not gaining it back as quickly as I would like to.
I am depressed.
I am doing everything I can to stay positive, and keep fighting.
It might help if friends and family would actually do things with me so that I didn't feel so damn alone all of the time.
My visiting nurse did not show or call today, and I was given a "phone discharge" from physical therapy, which I think was uncalled for and disrespectful.
Oh, and the last time the nurse DID show, she said I might not ever get my full lung capacity back.
What kind of shit is that?
I mean, it may be true- but she didn't give me ANY positive sort of anything- just a plain old "Yeah, you might have trouble breathing for the rest of your life."
Not cool.

Thursday, May 27, 2010

Home again

I spent an entire week in the hospital.
It was not fun. I lost 12 pounds, all told (of fluid, I am sure) and hope I can keep some of it off and continue to lose, but we shall see.
I should NOT have been discharged, and in fact, they discharged me when I was not fully breathing un-assisted. My O2 is still not 100%.
They got sick of me asking for someone to look at my eyes, and discharged me so that I could see my retina doc yesterday, which I did.
He said that he wants to wait a bit and see if any of this resolves on its own, but we have exhausted the lasers and they won't benefit me any more. The next step would be a vitrectomy on my left eye. I hope we don't have to do that.
A visiting nurse came yesterday, O2 wasn't great.
A physical therapy person came today and we did nothing physical at all... she'll be back next week, I guess. Another nurse is coming tomorrow.
Right now, I have no energy whatsoever, so I am going to try to rest more so I can heal.

Friday, May 21, 2010

Pneumonia:or, How to reverse full body edema in 3 miserable steps..

So I am still in the hospital. I lost about 10lbs.
I am back on clear liquids, by choice, because the few bites I had yesterday didn't agree with me. I was up all night vomiting bile and blowing blood out of my nose.
My oxygen level still isn't great. I can't breathe on my own yet. (Not intubated, just need to oxygen fed directly into my nose.)
Updating via phone is hard, so I will leave it at this for now.
It looks like I will be here for a while.

Thursday, May 20, 2010

This is just lovely...

I don't remember when my last update was, or what it was about.
I had a coughing fit on Saturday night, lost vision. Went to eye hospital. They said I have more bleeding, and I have an appointment with my retina doc on Wednesday.
On Sunday night, I developed a fever. Went to the ER on Monday and was diagnosed with bronchitis, given a z-pack prescription, and sent home.
I'd been taking the antibiotics and Tylenol and fever was/lt going away.
I spoke to my PCP early on Wednesday morning and we discussed giving it a little time. A few hours later, though, the fever spiked to 102.5 and I was dizzy as anything. I came back to the ER, and was admitted when they couldn't get my oxygen level above 87.
I have a bad pneumonia, and they are running tests to rule out TB.
I am a nervous wreck.

Monday, May 10, 2010

My eyes...

They still have spots in them.
I really don't know what to do at this point about calling the retina doc or something.
It is driving me batty, as are the headaches.

I also think I did some actual damage to both of my knees during the production I was just in, but I am scared to get those checked out. I figure on that front, I will at least give it a few days healing time and see if they actually get better. If not, the "snaps" that I heard while moving around should probably be investigated.

I am pretty sure that my speep apnea is getting worse. I haven't really used the CPAP machine recently. It is so awkward. I will probably replace the filters and try it again in the relatively near future.

I am still a human water balloon.

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.


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.

Sunday, April 25, 2010

Sick of it all.

I am so sick of hospitals.
I had to go to the ER about my eye on Monday because I lost most of the vision in my left eye all of a sudden.
I went to see the retina specialist on Friday and wound up having laser surgery on the aforementioned eye. I also had an allergic reaction to the fluroscein contrast, which I am still dealing with.
I started having chest pains on Saturday evening, and went to the ER after much hesitation.
I was told that my liver function is low and my creatinine level is up.
The rest of the bloodwork looks good, apparently.
They did an EKG, BP, and CO2 and gave me Toradol in my vein and that was it.
Prescribed a topical for my neck (for the reaction to the contrast) and sent me home... 6 hours before the public transit started running.. and this hospital would be a 3+ hour commute on public transit. The cab driver drove 80MPH. Not helpful.

Saturday, April 17, 2010

No strength...

I don't really have the strength to do a full update right now.
I got some weird infection on my right middle finger and it came out of nowhere and it hurts like hell. Not a clue where it came from.
I am on oral antibiotics and antivirals for it, and had been in IV antibiotics several times a day and then I got a sharp pain in my lower right abdomen and left ear, simultaneously... odd combo...
I was sent to the ER and after a VERY long time, an abdominal CT and a chest x-ray, (and an exploding vein) I was told that aside from still having blood in my urine, I am fine and need to g o home.. even though it was 4 hours before public transit started running.

Now I am home and exhausted and going to try to get some sleep.

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.

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.

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.

Thursday, March 25, 2010

Well then...

So I had some pretty positive stuff to write, and then my world blew up.
I will still come back and write more, but right now, my 3rd dose of morphine is wearing off and I need to go try to pass out before I feel the loss.
I have had so many medical emergencies in the past week, my head is spinnning.
Threw up blood on Saturday in a train station, went to hospital via ambulance, was brutally mistreated and discharged, with medicine that has swelled me up in the past.
Swelled up 10+lbs on Sunday/Monday.
Wednesday night, I got a sharp, sudden pain, which wouldn't go away, on my lower left abdomen. Was taken to hospital via ambulance from my friend's house.
Cyst on right ovary, kidney stone, and "probable ligament strain"...
So yeah, I don't have the strength to do much right now, but will write more when i am able.

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.

Sunday, February 28, 2010

Oh, hi.

I guess I haven't updated in a few weeks.
Still swollen, though I have come down a wee bit, so I will take what I can get.
I am on double the Bumex along with the Metolazone... no idea if that is why, as I think I lost some weight before I started it, but who knows?
I have been pushing myself to walk pretty much every day. Trying to strengthen up a bit.
Only so much I can do, but I try.
I have an appointment with a "weight management" doctor in a few months. This bothers me a lit, since despite all of the IN YOUR FACE EVIDENCE that it is FLUID, not fat- they will just treat me like I am fat. I mean, I am, I don't deny it, but THIS fiasco is from the fluid.
The endocrinologist and people in the endo's office seem to be pretty decent, and the weight management folks are in the same office, so I am trying to stay positive.

Tuesday, February 9, 2010


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.

Monday, February 1, 2010


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.


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.

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):
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.

Thursday, January 7, 2010

I guess I should updte.

I had my surgery on my left eye on 12.30.09.
The doc used a different type of laser than the other ones had been, explaining that it was going to give the ability to get more pin-pointed areas.
It was way more intense, it hurt like hell, but I got through it.
I wound up having unexpected oral surgery a week later (1.5.10) because I woke up choking on a filling and a piece of my tooth, I would assume. It couldn't be saved, so I lost a molar. It took a very long time to stop bleeding, and it still hurts a bit. I go back on Tuesday to have the stitches removed and hand over my partials so that they can add the now-missing tooth to it. :(

I had an appointment with the diabetes nurse today. She said that although we aren't exactly where we want to be, that I am going a great job at keeping track of stuff, doing the right thing, and whatnot. She said that 50% of my bloodsugars are where we want them to be, which is MUCH better than they used to be.

Today, a urinalysis was submitted, and blood drawn to text electrolytes, lipids, magnesium, A1C, thyroid and basic blood count.

I hear that my echo-cardiogram shows that whatever is causing this edema is NOT heart failure. A small comfort, that. Still don't know what it IS. I mean, we know I have kidney disease, but I was told that it COULDN'T cause the level of edema I have. I can't catch a break.

Today, at my nurse appointment, my left eye started acting a little funky. By the time I was done with the lab tests, it was really taking a toll on my line of vision. I went to the ER at the hospital my retina doc is at, and saw the fellow. I was informed that there was no new bleeding (good) and that this was scar tissue from the surgeries and it just moved (not great) and I'd just kind of have to learn to "deal with it" or something. Well, doing the best I can- it isn't easy, but I am trying to stay positive at least a little bit.

I am so worn out. So tired. I need answers, not more walls to climb.