The stars can't shine without some darkness, right?

Maybe that is why I have always been drawn to the night sky, even though I am scared of the dark- that little glimmer...who knows?

It has been a very tough couple of years, medically speaking. I had sinus surgery in March, which I think I wrote about. The healing process was very slow and painful, and I am honestly not sure if it is over with or not at this point, as I am still having issues. I am doing my best to stay on top of things though.

After all of that, I had an MRI of my brain, with contrast. (This was in May) it shows a few tiny foci of increased T2 signal in the cerebral white matter, and a small retention cyst in the left maxillary sinus, and the bony coating over the left superior semicircular canal appears thin. Great.
This doc also ran tests for syphilis and lyme antibodies- both negative, thank heavens.
He sent me for vestibular testing and I was diagnosed with vestibular neuritis/labyrinthitis, and I have to go to see a vestibular physical therapist about once a week to learn exercises to train my brain to not think that I am dizzy/falling all of the time. It is getting a bit better, I think, and my VPT says that I am showing improvement, so that is good. my level of vertigo/headache/stability realy varies day to day, but I do my best, and try to keep up with my exercises at home.

My coughing and ENT weirdness continues, and I remain in debilitating pain, so I get sent for more and more tests. I have been exposed to so much radiation over the past month or two, it is insane. I did have a basic meta done in early October and the results were mostly in range, so that is good. Creatinine SLIGHTLY high, which is to be expected of someone with kidney disease, such as me, but only ever so slight, so actually really good.

I had a full pulmonary function test last week, and it showed that I have mild obstructive ventilatory deficit and mild diffusion defect, which apparently means that I can neither breathe in nor out as much as I should be able to. 

There are many more tests to go over, but I am too tired to type any more right now.
I will try to be better at updating this, but no promises, haha.

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.

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.

Answers? You don't need no stinking answers!

That seems to be what everyone is telling me these days.
Since May 9, 2008 I have been dealing with this on a daily basis, and not one single answer.
Today, I saw the kidney doc, and got a whole bunch of nothing.
I mean, I was diagnosed with kidney disease, and now they can't even tell me what stage I am in? How screwy does that sound to anyone else, because it sounds really damn screwy to me.

Let's backtrack for a sec.
~On 5.9.08, I weighed 165lbs, possibly 170lbs, due to the broken toes on both feet.
~Later in the day on 5.9.08, I weighed 200lbs, was breathing funny, and had no ankles.
~Was told by the hospital it was in my head, given an Ativan and sent home.
~Went to 2nd hospital on 5.11.08 and was given oxygen and told that since I am "not dying right now, we can't help you" and sent home.
~Hospitalized on 1.20.09 with a hugh fever, vomiting, shaking, the works. Inpatient for a week, not allowed to eat or drink and losing all matter of fluids in all manner of ways, yet still swelled up 15 more lbs overnight and nobody cared.
~Echos have been normal
~Leg US have been normal
~Stress test was normal
~MRI revealed benign tumor on my liver, and was ordered off of birth control in 7/08.
~Random episodes of swelling do not seem to be in correlation with any specific event/food/drink and have gotten me to 263lbs max.
~Meds being switched constantly, including today.

Med list:
Lantus insulin
Humalog insulin
Metolazone 2.5mg
Bumex 2mg (starting tomorrow or whenever I can pick it up- this is replacing the 80mg/Lasix)
Levoxyl 100mcg
Diovan 80mg (my BP doesn't tend to be all that high, this is for kidney protection, but now they are talking about how I should be on a higher dose, but I STARTED on a higher does and almost fainted straight away)
Zyrtect 10mg
Vitamin D 800mg/daily & 50,000mg/weekly
Omega 3 Fish Oil which is for cholesterol, but it is not covered, so I don't know how long I will be able to take it if I can't afford it. I have been DEATHLY allergic to every "medicinal" cholesterol med I have tried, so the nurse wrote for this. Insurance will pay $300/month for something that will kill me, but they won't pay $10/month for something that could very well help me. Go figure.
As needed: Proventil, Ranitadine, Flonase
Unsure: Topamax- was on this for years, taken off of it for a medical study I was in. Am done with the study and unsure as to weather or not I should go back on it or not. Kidney doc refused to say, have left message with my PCP.

Recent test results (rec'd 1.8.10):
Chemistries
Na 139
K 4.9
Cl 101
co2 28.1
Ca 9.3
Mg 2.2
PO4 4.5

Kidney tests: "Your kidney function is stable. Creatinine has improved since last check."

Glucose: "Your blood sugar is stable."

Liver tests
Protein 6.7
Alb 3.9
AST 16
ALT 20
ALP 153
T Bili 0.2
D Bili 0.1

Cholesterol "Slightly better than last time, except triglycerides, but this is not a fasting and this affects the results."
Cholesterol total 245
Bad Cholesterol (LDL) 143
Good Cholesterol (HDL) 51
Triglycerides 256

Thyroid Tests: "Your thyroid tests are normal."
TSH 1.67

So yeah, that's about it. I don't know what all of the tests/results mean, but I don't get answers when I ask. I have been told by my kidney doc that she has no other ideas, no other tests, no suggestions of another sort of specialist to seek out answers from.

I asked about natural suggestions and was told only that they are dangerous. (Right, so like, I have low potassium and I eat a banana and it will kill me? Bananas are natural and contain potassium. Please explain to me how this will hurt me? All I wanted was maybe a list of food that might AIDE in the getting rid of fluids...)

I am so lost. Please make it stop. I am begging, if any random person who reads this happens to know someone, some way who can help, I would be eternally grateful.

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.

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.

I guess it has been a while..

The day after I last posted, I was in a serious car accident.
Thankfully, I was wearing my seat belt, as was the driver. We were both injured, but survived, and there were no other vehicles involved.

Separate from the on-going medical stuff that is already going on, on April 6th (day of the accident) I was taken to the ER via ambulance on a backboard in a cervical collar. My glasses were ruined.
They took a head CT, chest x-ray, abdominal CT, and left ankle x-ray. Nothing for pain. They waited to take the cervical collar off even after the tests cleared me because they said that the type of pain I was having indicated that there may be some sort of break in my neck and they wanted the attending to check it out. She cleared me.
On the 8th, I had visible bruising on my abdomen and increased pain. I had headaches isolated to the left side of my head and going down to my nose. I tried to get back to the ER via public transit, but got worse, so I wound up getting of the bus and getting an ambulance. They took blood from my groin because they couldn't get any from my arm. That was NOT fun. They did an ultrasound of my belly and that's about it. They did give me insulin even after I told them that I did not need insulin and that it would cause problems if they gave me any. They gave it anyway, which resulted in me getting soaked with sweat and shaking and being quite out of it with a blood sugar of 44, at which point they HAD to get a line into me to give me glucose by IV. Then they discharged me.
I was still having the headaches on Saturday, so I went to a different ER specializing in this sort of thing to get checked out.
I saw my PCP on Monday (yesterday) and he prescribed a muscle relaxer to try to alleviate some of the pain.

Okay, back to the "regular" stuff. (Ha!)
I did go back to the dentist but he did not lance the gland because of the trauma to my head. I am on Amoxicillin and have to go back in a week to see what the progress is and hopefully get it taken care of at that point.
During my appointment with my PCP, he agreed that I should be tested for MRSA, but did not do the test because he had to have the visit "only accident related" Ummm.... okay.
He also did not like the fact that the renal specialist wants me to try coming off of the Diovan and teh Actos to see if helps lessen the edema. Apparently both drugs cause edema. The timing does not match with when I swelled up, but she wants to be sure that they are not making matters worse. She called this morning about coming off of them and I am going to go with the opinion of the specialist right about now. I am not hypertensive, and I understand that some blood pressure meds are used to help prevent diabetic kidney problems, but this is a kidney specialist telling me to come off of it, so I am going to try to have a bit of health in that fact.

I went to have an abdominal MRI yesterday, to follow-up on the one I had in July. That was an event and a half. It took about 8 sticks from 3 people to get blood from me, and then when they got the blood, they didn't start the IV line. So it took about 6 more pokes from 2 more people to get the line into a very odd spot on my left arm. I was then told I'd be going in in 7 minutes. THEN I was told that the blood test was not back because the blood machine was broken and it would be at least another hour. I started crying and said that I can't go through this again, because it had already been too long and painful of a day. Luckily they decided that the results they had from a few months ago were good enough and they sent me in. It was difficult in my swollen and banged-up state, but I got through it. Hopefully I will get the results sent to me fairly quickly.

I am dumbfounded right now.

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