I am glad that you have your power back on!!!!!!!
Did you have any caffeine with drawl headaches from limited coffee beverages for the day?
I suppose you could have boiled water and run the hot water over grounds for over pour. Not sure what that is called.
Hoping that things get back to normal for you.....
sorry that the doctor called your appointment,
weather messes everything up.
Hugs and love to you today.
(((((HUGS)))))
bizi

Kay,

That was some storm!

Probably the stuff in the fridge is fine.
Some things like eggs and dairy can be o.k. for a while.

Gas ranges are nice for these kinds of situations.


M

Bizi,

She might not have had hot water either.


M

My original appointment with the shoulder guy was at 10am yesterday.
I got an automated phone message and text at 6:30am to tell me my appointment was cancelled.
Around 9am, a woman from the office called to ask me if I could come in at 1:30pm instead, and said she would call me if they had to cancel.
When I arrived at 1:30, the office was CLOSED :mad::mad::mad:
I got another automated call and another text at 3pm telling me that the appointment I had scheduled for an hour and a half earlier had been cancelled :mad::mad::mad:

I don't think I am going to reschedule the appointment. I will call the office when my shoulder really flares up again. Right now, he will likely order PT, which I don't have the time to do right now.

The kidney BS takes precedent. I have the CAT scan Friday and my appointment with the nephrologist is on Tuesday the 7th. I know from one of my test results I will probably have to see an endocrinologist at some point. I'm hoping I do not need a biopsy. Of course I worry about that.

I'm hypo, or maybe even manic at this point. I started cutting the Rexulti in half (to 1mg) on Sunday, and it's not helping. I'm racy and can't sit still, and I'm very uncomfortable, but still euphoric. Normally when I'm like this, I'd be ripping butts, but we can't smoke in the apartment, and it's really cold outside, so it's KILLING ME! I broke out the e-cigarette this morning... not helping.

I have an appointment with my doc early Friday morning, but I need to call her today before things get out of hand because I'm way too high. She's been giving me samples, but I only have 2mg pills that I can't cut into quarters to go down to 5mg. I hope she just takes me off of it.

I vacuumed and dusted yesterday, but I stopped myself from doing more. I have two more days to fill with things to do to occupy myself... without injuring myself.

I'm not going to get into what's off with the blood and pee tests, because they're complicated and I'm confused about a lot of things...

But from some results, I clearly have a condition related to my kidney problem where everything fits, except my calcium should be low, but it's normal.

I've been taking FiberCon for a couple of years, and when I just filled my pill case, I noticed the generic bottle says, "Fiber Laxative Plus Calcium." And I take 4 pills a day. lol. And I missed that HOW?

That seems like something important for the doctor to know if you have calcium deposits in your kidneys...so I called his office. I wonder if he will have me stop taking it and retest my calcium level. IDK.

I believe she said she has a gas stove....this is why I made the suggestion.
She could make desperate coffee next time this way.
I hate losing power.
It really disrupts your routine.
bizi

I am sorry kay,
I know how much you hate waiting, as do I.:(
I am hoping that you will have more answers on the 7th.
am running behind schedule so will write more later.
((((((HUGS))))))
bizi

I didn't get a call back from the nephrologist's office re: the laxative with calcium, at least not yet, so I'm still taking it.

I'm waiting for my glasses to come in. They should be in soon.
I'm waiting for my license to come in the mail so I can finish the application for my medical marijuana card. That should come soon, too.
I'm waiting for a lot of things.

I normally won't go out to smoke a cigarette more often than every hour. Since I've been hypo, so I've been chomping at the bit, and had been going out every 1/2 hour at times. The e-cigarette helped yesterday, so at least I was able to wait an hour between butts. This is the first time it's really worked for me because I always had the easy alternative of lighting another real cigarette in my apartment, but now I can't do that, and it's cold and unappealing outside. Maybe I will quit when it gets colder. I can't see myself going outside to smoke a cigarette every hour when the temp is in the teens.

I left a message for my pdoc yesterday, and got a message back from one of the secretaries. She must not have relayed the my message correctly to the pdoc because the response was inappropriate. Anyway, she wants me to stay on Rexulti at the dose I'm on until I see her tomorrow.

I did a bunch of sedentary stuff yesterday. I couldn't tell you what I did, but I was all over the place. I know I spent several hours searching for the perfect robe... but I don't even really need one. And I know I made a bunch of phone calls.

I'm doing laundry today... early.

I just checked the hospital's website again, and they finally listed the "oxalate" test, but the results are still pending until this afternoon.

I was nervous because it was not even listed among the other tests while they were pending, and it was the ONLY reason why I had to do the 24 hour urine collection in the first place.... and obviously I didn't want to have to do it over again.

I guess sometimes obsessing pays off.

Hugs kay.
(((((HUGS)))))
bizi waiting with you.....

I got the results of the lab test I was waiting for, and they were good, as I hoped/expected they would be. (Hopefully) The last test is the CAT scan, and that will be over with this afternoon. I don't know if/when I'll be able to view the radiologist's report before my nephrologist's appointment on the 7th, when hopefully I'll find out how all this s*** fits together.

I saw my pdoc today, and I'm going to stop taking the Rexulti. Hopefully I'll start to come down without becoming depressed. It's a shame really... I've been in such a good mood lol :D

My pdoc appointment was at 7:20am, and my CAT scan isn't until 2:15pm. It's about 9:30 now, so I still have quite a chunk of time to fill...

And I am not doing well with not having enough to do right now. I'm too restless.

that is great

It is.

But there are test results that are NOT good, and I understand enough to know what one of the things wrong with me is, but I can't put everything together. That's what the doctor's for though.
I think the CAT scan will be important.

:hug:Good luck Kay.

Donna :grouphug:

thinking of you kay,
waiting with you.
(((((HUGS)))))
bizi:grouphug:

Thank you :hug::hug::hug:

I was very, very high yesterday. I am probably manic. I hope that stopping the Rexulti helps. If not, I will have to add on some extra gabapentin, which usually (at least) helps. Discontinuing the Rexulti was my idea... hopefully the right one.
I do feel calmer this morning. I know part of that is because Corey is home. But maybe it is because I started cutting the Rexulti in half Sunday and didn't take any last night.

I waited 45 minutes for my 5 minute CAT scan. It was weird... the tech had me lay on my stomach, and the pillow smelled like vinegar lol.
It looks like I won't be able to view the radiologist's report until Monday, the day before my nephrologist's appointment.

I got my new license in the mail, so I was able to finish the application for my medical marijuana card. I expect to get an email with a temporary card in a week- week and a half, and should be able to use it at a dispensary immediately. The real thing should arrives sometime within the month the temp is good.

BJ's called me late yesterday afternoon to tell me my glasses are ready. I'll go get them today. I LOVED them when I bought them. Let's hope I LIKE them enough when I pick them up to actually wear them. I'm blind as a bat and should be wearing them all the time, but only wear them to drive or watch things like football on TV now lol.

My nephrologist called and left a message for COREY- NOT ME- saying that "Kathryn is okay", but if there is an emergency he should take me to the ER "immediately".
He also said that I need to call his office after 1pm on Monday (my appointment with him is scheduled for 3pm on Tuesday) to discuss my CAT scan results.

My guess is he called Corey because he is my emergency contact, but why couldn't he call me and explain the results to me over the phone then instead?



Something is very wrong :(

i would call him first thing monday morning to find out what is going on.
love
bobby

I agree with bobby.
call monday
((((HUGS))))
bizi
sorry you have to wait....

He probably did not have your number in front of him.
I'm glad that Corey has been informed.

I hope that when you get the results, you find that whatever it is can be
well managed and that you are o.k.



M

(((((HUGS))))))
bizi

I'm sure that he had my number. Not exactly sure why he chose to call Corey instead of me. It's not really a matter of WHO he decided to call, but that he thought he needed to call at all.

The radiologist report you receive from your doctor is the final report, but MRIs, CAT scans, and some X-Rays are usually read more than once....

First, a radiologist takes a cursory check to make sure that there is no immediate risk to the patient's health right after they have the test. If there is a potential medical emergency, the patient will not be able to go home, or will be called back to the hospital.

Then there is a "wet read" within about 24 hours after the test when a radiologist takes a second look, and will give more detailed findings, some of which may be more serious.... my nephrologist most likely called after he got that "wet read."
My best guess is that one of the calcium deposits in one of my kidneys is in a really bad place. That's the best I can come up with.

My nephrologist will get the full radiologist's report on Monday- the same day I should be able to see it as well. I can't talk to him until after 1pm Monday because that's when his office opens.

It's amazing, but I'm not really thinking about it/talking about this much. That's good because it would only feed the beast. It's better not to dwell on these types of things, especially since I'm in the middle of an episode, but easier since I am experiencing a euphoric type of hypo/mania. I got very racy starting late in the morning yesterday, but I think I am coming down. I took (2) 1/2 doses of Rexulti for 5 nights, and haven't taken it at all for 2. I think d/c'ing it was the right decision.
I may not be consciously thinking about all this kidney s***, but my anxiety has been very high. I'm still consistently at 2mg of Klonopin. Sometimes 2 1/2.


Corey went with me to pick up my glasses and we went out to lunch after... his idea. It was nice to go out for a change. It rarely happens. So I was very happy :)

I LIKE my glasses. I got transitions lenses and they look awesome when they change in the light. I haven't bought a new pair for several years, and there is a big correction for my astigmatism, so I have to wear them all day for several days to get used to them.

I feel badly. I should not complain about my medical problems. I am getting good and prompt medical care, and others have much bigger worries than me.

that is great about your glasses. seek comfort from us. you give so much comfort and and you have so many things to deal with!
love
bobby

OMG! Don't feel badly!
You have so much on your plate...it isn't funny.
I am glad that you got to eat out for lunch.
and bobby is right you provide so much support to us.
We are like family in some ways.
We have been thru a lot together over the years.
I am thankful for you and for these forums.
love and hugs bizi:grouphug:

Kay

Your problems are just as important as anyone else in here.
We all love you. Keep telling us what you need to.

Donna :hug::grouphug:

Hi, Kay,

Enjoy the glasses.

What you call transitions -- are these the ones that adjust to light? That's cool.
'Glad that you like them.



M

Yes, they adjust to the light. It IS pretty cool. They are less expensive to buy, and more convenient for me to have, than the regular ones and sunglasses. Prescription sunglasses can be very expensive. I know people buy glasses online, but I am extremely picky and a very difficult fit so I won't do it.

I've come down to a safe and much more comfortable place, but I'm still a little hypo and euphoric. It's really been helping me deal with the stress I'm under. I hope it holds up through whatever it is I find out today... and going forward.

I'm having my nails done at 9am. It should be a nice distraction for a little while, and I enjoy having them done.

I hope when I get home I can view the radiologist's report online...

I will let you guys know what the nephrologist says after I speak to him.

I am glad that you are in a safer place.
Do let us know when You speak to him.
(((((HUGS))))
bizi
glad that you got your glasses.

I called and left two messages yesterday, but my doctor never called me back. I got a "no caller ID" call on my cell phone while I was in the bathroom at about 7:45pm, but whoever it was never left a message. Maybe it was him. IDK.

I did get to view the radiologist's report... wow, am I a f***ing mess!!! I feel both better and worse after reading it, but I'm not worried about any kind of medical emergency now.

1) I *think* what the nephrologist was worried about pertains to my lower GI system. This is the 2nd CT scan I have had that indicates I probably have inflammatory bowel disease (different than IBS). The radiologist couldn't rule out an infection, so my doctor probably called in case I had diverticulitis again and wanted to make sure I didn't hesitate in getting to the ER for treatment if that was the case. He should have just called me and asked about my history.

2) I have "scattered lymph nodes" in my abdomen, but they are not large enough to be significant in their own right.

3) I have "scattered degenerative changes of the visualized skeleton but no obvious fractures," which means that I have arthritis and/or osteoporosis in a lot of places, but no broken bones.

4) I have calcium deposits in my blood vessels. The radiologist was non-specific about where. It could be old-fashioned heart disease, but it's probably related to the calcium deposits that are in my kidneys, too.

5) Not much was said at all about my kidneys. They are "normal in appearance," but I know I have medullary nephrocalcinosis- calcium deposits in my kidneys (not the same as kidney stones). Apparently they didn't show up on the CT scan. I don't have kidney stones.

The radiologist noted that the exam was limited tho because no contrast was used. I hope they don't expect me to go through it again with the contrast.


From the results of the blood and urine tests, it looks like I will probably have to see an endocrinologist because I have a problem with my parathyroid glands. After reading the radiology report, I don't know if I will have to see a cardiologist and/or rheumatologist now, too :confused:

At some point, I'm going to have to call my gastro so he can take a look at the CT scan, but there's no f***ing way I'm opening that can of worms right now.


My appointment with the nephrologist is at 3pm. It will be a long day of waiting again... I still don't know what's causing all of this.

you have so much on your plate.
love
bobby

I will wait with you .....
(((((HUGS))))))
bizi

Sending hugs.

Will be looking for the answers.

Donna :hug::grouphug:

Kay, I read your post and I mostly understand it.

'Deeply sorry that I cannot respond to the issues.


I send you strength to for the work you do every day to take care of yourself
and your husband.

I admire your focus.

Know that all of us are with you.


M

I was right about why the doctor called my husband on Saturday.

I still have no answers because the CAT scan failed to show the calcium deposits that showed up on the ultrasound. My nephrologist said he would be at the hospital on Thursday and would consult with the radiologists.
Why didn't he just order the contrast!!!

I asked about the calcium deposits in my vascular system, and he said he hadn't noticed that in the (short) radiologist's report. He said it was unusual for a 37 yo woman, and said he will ask the radiologists about that, too.
When I asked him what I should do about it, he told me to stop smoking :o
When I find out what the radiologists have to say about it, I'll consult my PCP about it.

He said all my recent blood work and pee tests were okay. He isn't concerned about my parathyroid. He said my parathyroid hormone was so low because my "vitamins are so good." It is well outside the normal range... I forgot to ask a question I should have...

Anyway, I am waiting again.
I will call his office Monday if I don't hear from him before then.


I have come down a lot, but I am still hypo. My biggest issue is psycho-motor agitation. It's better than it was before, but I still just can't sit still. I saw my pdoc this morning and she's having me double my 300mg dose of gabapentin for 3 days before going down to 400mg until I see her in 2 weeks. I think 400mg will be too much for that long tho.

I saw her at 7:30 and I have my Tysabri (MS med) infusion at 10am, which has left me with a little over an hour here at home.

I'm hoping I don't get that super-slow nurse again :rolleyes::rolleyes::roll eyes:
I don't want to get stuck there all day.

It would be nice if I could take a nap when I get home, but there's little chance of that.

How long did the infusion take?
Did you get a nap in?
glad that your mood is better.
((((((HUGS)))))
bizi

It was a S*** SHOW at the hospital when I got there to get my Tysabri. They were running really behind, mainly because of pharmacy issues, and all the poor nurses were so busy...
But I STILL got out of there in the 2 1/2 hours it's been taking lately because I didn't have the slow nurse, who wouldn't have been able to handle the pressure. I told the other nurses about my experiences with her, and they said she was hard to work with because she is really ****ing lazy.

I took the double dose of gabapentin last night, and I expected to sleep in and wake up at least a little sedated, but I woke up alert at 6am. I slept through the night tho, which is rare. If I had any spasticity it didn't disturb me.
I am still high and can't sit still this morning.
I wish I was still euphoric... that was wonderful! But at least I'm not dysphoric.

The RN at my nephrologist's office called me yesterday to schedule me for a 1 month follow-up appointment, so I guess that means I shouldn't expect a phone call regarding his consultations with the radiologists.
There's nothing I can do to get rid of the calcium deposits, so I think my goal will be to just TRY to forget about this whole ordeal until I hear from him again, or see him next month. I surrender.

Today would have been the best day to do laundry because it will be a high of 50 degrees out vs. 33 tomorrow, but I just need a day to myself. I was hoping I would be calmer and able to sit still tho. I have a couple of errands to run, so at least I won't be trapped in the apartment all day, which would be misery.

Thank you for the update kay.
YOu could still call on monday, he did say he was going to get more info today, maybe he will still call you today, here's hoping.
maybe you just want to not worry about it till then, you have been worried about things for such a long time. I feel sorry for your waiting and agony.
I hope you get your errands done and that you can get a good nap into today. Your body needs to recover from all of this mental anguish.
(((((HUGS and love )))))))
bizi

I don't know if one more double (600mg) dose of gabapentin is going to bring me down enough to go down to 400mg. I'm still dealing with a lot of psycho-motor agitation, and I'm still really racy, etc. I slept, but not through the night last night, and I woke up alert again this morning. Too bad it wasn't sedating… I could use some sedation.

I feel like I'm getting a little vacation because I don't have any medical-related obligations until the 20th when I have to have my blood drawn again because of my persistent high lymphocyte count, and I don't have an appointment until the 22nd when I see my pdoc :)

The cat room is a mess and I've been VERY bothered by it, but so far I've been able to restrain myself from doing anything about it during this episode because I'm really afraid of hurting myself again.
But, this morning I'm like (this) close to messing around in there even though Corey said he will help me this weekend. He's not exactly reliable, but I need to believe he's going to help me, so I'll wait. I'm going to be home all day, so I'm going to have to find other ways to distract myself.

My new iPhone is coming today, so it's good I'll be home to sign for it. I don't remember when FedEx comes, so I will take an early shower so I don't miss them.

It would be great if I heard something from the nephrologist today, or if his RN calls to tell me he wants to order more definitive testing (i.e./ repeat ultrasound or CAT scan with contrast this time), but I don't expect it.

I haven't heard anything back about my medical marijuana license application yet. I have been checking my email tho…

Kay,

'Would be nice to teach the cats how to keep up with their room somehow.
Maybe in the future someone will develop more self-cleaning devices.

Let us know about your new phone.

M