Another day in paradise

It's now been 24+ hours with no sleep except for a 2-hour (or so) nap yesterday afternoon. I'm a little tired now, but I have no idea when I'll doze off...I was close to sleeping about 4 a.m. but never managed to actually fall asleep. I'm sure exhaustion will begin to set in soon, so I'm hoping I'll get at least a nap in this afternoon.

Nothing is going on. I haven't heard from any doctors. We have no idea what's going on with the foreclosure on this house. I feel like I'm treading water and barely keeping my head above water at this point. So many things I need to do, but I rarely can keep at anything longer than a few minutes at a time. I'm just totally frustrated. Over the last week, I've begun crying at random moments. I'm sure it's just the stress (and messed up sleeping pattern), but I'm tired of it. Bobby's not real fond of it, either. I just want an answer or answers or even a good guess at this point.

That's all I can handle for now. If I hear anything, I'll let you know.

Nothing going on

I just wanted to pop in and let everyone know that I still know nothing. I didn't go to sleep until about 3:30 this morning, but I stayed in bed until 11:00. I woke up repeatedly but just kept going back to sleep. I don't feel very rested, though. And, of course, the headache is still there. No other news.

Hematologist/Oncologist vist

I got back from my appointment with the hematologist dude a little bit ago. Nothing jumped out at him immediately, but he's going to coordinate with the endocrinologist to make sure they don't order duplicate urine/blood tests.

He doesn't see anything that suggests any type of malignancy or tumor, and the enlarged spleen may or may not mean something. He'll call me by Monday afternoon, after he's spoken with the endo guy and they've mapped out a game plan.

So, in a holding pattern again. When I know the plan, I'll clue y'all in.

Yet another doctor

Well, I didn't take the Ambien last night and I slept about 5 hours, which used to be a normal amount of sleep for me. I did wake up at least twice due to headache pain, but I got some sleep. I got the paperwork filled out for the long-term disability yesterday, even though it took me several hours and caused an even worse headache. Since my appointment with the hematologist is near where I work, I'll drop off the completed form when I'm over that direction. I'll be taking the physician's statement to my doctor today for him to complete and fax to the insurance company.

It's difficult to complete the paperwork when you don't even have a diagnosis, let alone an estimated "return to work date." Not to mention they want information on all the doctors seen for this condition, and only give you room to list one! Needless to say, I had an extensive attachment.

I'll try to update again after my appointment this afternoon.

So much for sleeping

Well, the Ambien worked great on Friday night. Saturday night, it took a while to fall asleep but at least I slept soundly. Sunday night it again took a while to fall asleep and I didn't sleep through the night. Last night, I took the pill at 10:15 pm, didn't go to bed until 11:30 pm and couldn't fall asleep at all. Shortly after midnight I got out of bed and returned to the living room where I finally dozed off in the recliner an hour or so later. I'll try the Ambien again tonight, but I don't know if it will do me any good. Drats. I enjoyed that nice sound sleep! It really would have been nice last night - the headache was awful (still is) - and a few hours of deep sleep would have been wonderful.

Meanwhile, I've started the 24-hour collection of urine. I'll take it to the lab tomorrow.

I am definitely not in a sociable mood today. The headache pain is very focused and very intense. I just wanted to get this note out to let people know I may not be responding to email or phone messages today. I have paperwork to complete that will require all my concentration in order to finish. Then I need to have my doctor finish the paperwork so I can get it turned in at work.

No, I'm not exactly feeling perky. I'm feeling desperate. I want an answer about something!

Later, all!

Endocrinologist visit

I'm home from my first visit to the endocrinologist. While he doesn't exactly seem overwhelmed with the possibility of Cushing's, he has ordered a test - another 24-hour urine collection - to check for "free cortisol" in my urine. This test is one of the main tests used to begin a Cushing's diagnosis. If the adrenal gland is producing too much cortisol, the excess should show up in my urine.

Info from http://www.nlm.nih.gov/ (National Library of Medicine, National Institutes of Health:

The test is used to evaluate for increased or decreased cortisol production.

Cortisol is a steroid hormone released from the adrenal gland in response to ACTH, a hormone from the anterior pituitary gland in the brain. Cortisol levels rise and fall during the day. Highest levels occur at about 6 a.m. to 8 a.m. and lowest levels at about midnight.

Cortisol affects many different body systems. It plays a role in:

• Bone
• Circulatory system
• Immune system
• Metabolism of fats, carbohydrates, and protein
• Nervous system
• Stress responses

Different diseases, such as Cushing's disease and Addison's disease, can lead to either too much or too little production of cortisol. Urinary free cortisol measurements can help to diagnose these conditions.

Urinary free cortisol is a measurement of the cortisol in the urine that is not attached to other substances. Free cortisol represents the active form of the hormone. The urine measurement directly reflects the blood level of cortisol.

I'll start collecting urine tomorrow morning, finish Wednesday morning and turn it into the lab that same day. I go back to the endocrinologist on 23 March to get results and determine our next move.

Meanwhile, on Wednesday I still have the appointment with the hematologist regarding the spleen. Though an enlarged spleen may be associated with Cushing's, the endocrinologist recommended I keep the appointment in case it is unrelated.

Yes, I still have a headache. No, it doesn't go away. The Ambien seems to be helping me sleep, but not as well as it did that first night. I'm going to try taking it earlier tonight rather than at bedtime.

Good thing I'm already on antidepressants...going through all this is enough to make you clinically depressed! It's hard to be cheerful and "normal" when the pain never stops and you can't find a cause. Add to that the stress of long-term disability paperwork and the possibility of moving due to the landlady's foreclosure, and it begins to sound like a movie on Lifetime or something. Only not as much fun to watch.

Please keep those prayers going!

Sleep x2

Wow! This Ambien stuff is wonderful. Two nights in a row of sound sleep....slept for hours without waking. Ahhhhhhhhhhh. Still have all the same problems, but at least I'm getting some real sleep instead of waking up every hour or so due to the headache (if I sleep at all).

Friday visit to neurologist

Hi, all!

I just got home from the appointment to go over my "normal" test results. The neurologist does not think there's anything neurologically related going on, but he wants to find out what IS going on. I mentioned the research I'd done on Cushing's Disease/Syndrome and how my symptoms seemed to fit the profile. He rolled back in his chair and looked at me and said, "Well, you've got the round face that's usual with Cushing's. Let's send you to an endocrinologist to get that checked out." So, I have an appointment with an endocrinologist on Monday afternoon. (He's in the same medical group as the neurologist).

In addition, he's still a bit concerned about the splenomegaly (I've decided that's my word for the day) - the enlarged spleen. He wants me to go see a specialist. Amazingly enough, I have an appointment with him next Wednesday afternoon! (Same health care system, but not same medical group). I'll be taking copies of all the MRIs/CTs with me with me.

It looks like I will at least feel like I'm getting something accomplished next week! Keep sending out those good thoughts & prayers! Maybe I've finally found that yellow brick road of answers...

By the way, since I once again did not sleep at all last night, Bobby told me to get some sleeping pills. I mentioned this to the doctor and he gave me a prescription for Ambien. Maybe I'll get some sleep tonight??? Oddly, I don't feel totally functional but I don't feel sleepy either. This typing thing has been a challenge, though! Mr. Delete & Ms. Backspace are getting a workout on this.

On the landlady's foreclosure & our rental predicament, she was supposed to be getting info to me about a possible lease-option to buy deal with some lender. A lady from the lender called & left a message the other night, but did not call me back later like she said she would. I have not heard from the lender or my landlady since. This could get interesting!

I also have a nice stack of forms to fill out for my long-term disability. Short-term disability leave is up in 10 days and there's a whole new set of forms to fill out for long-term disability. Thank God I've been carrying the Salary Continuance Insurance. I don't think it's full pay (60%, I think??), but it's a whole lot better than nothing! As long as I continue to pay my share of the premium, my health insurance will remain in effect, also. If worst comes to worst, the SCI would actually continue until I turned 67, though I think it's adjusted if I were to get Social Security Disability at some point. Let's just hope I don't have to worry about that. I really don't want to do all that paperwork!

At least I'm feeling slightly less hopeless today. I'll update whenever I have more info.

Love to all!

Test results

ARGHHHHHHHHHHHHHHHHH!

Well, I got the blood/urine test results a little while ago. Unfortunately, all results were "within normal range" according to the nurse. I have an appointment tomorrow (Friday) morning to go over the results and, I assume, figure out what to do next.

I got the birthday present I wanted - test results. Too bad I'm normal (though I'm sure most of you would dispute that finding!)...I was hoping we'd finally start getting some kind of firm idea which path to take. It's rather like getting the exact thing you wanted, but in the wrong color.

I'll send/post information after my appointment tomorrow. Please keep those prayers going.

Happy birthday?

Well, I'm officially older today, but the only gift I want is information from my doctor.

:-(

No, I still haven't heard anything. I'm almost ready to go camp out in the waiting room until I get some kind of answer.

I'll let you know when I finally hear something!

Wednesday already?

After getting about 3 hours of sleep, I'm not even sure what day it is. I'm just hoping I fall asleep in the recliner or something so I'm not so loopy.

Meanwhile, no news from the doctor yet. I called and left a couple messages yesterday, but no response. Odd, they were as eager as I was to get the results. It sounded like they were extremely busy yesterday, so my fingers are crossed I'll hear from them this morning. The stress from waiting is not exactly helping my headache, that's for sure!

Nothing else right now. Hopefully I'll be posting results soon!

Sleepy

I am getting tired of being tired...my sleep is so screwy. I felt pretty good yesterday as I had gotten a "normal" kind of sleep (first time in several nights). Then last night I couldn't sleep for the longest time, finally dozing off sometime between 4 - 5 am in the recliner. After Bobby got in the shower, I went and crawled into bed about 5:30 am. I then was in the sleep-wake-sleep-wake cycle for several hours. Bobby texted me shortly before 11 am to remind me of the time/channel of a show I wanted to watch (knowing I'd forget...told you he takes care of me!). So, now I'm awake and watching the show.



No call from the neurologist. I'll be calling them this afternoon.



Since I mentioned Cushing's in yesterday's entry, someone searching "Cushing's" was directed to my blog. Turns out she has a blog about her family's journey with Cushings - both her children and her husband have the disease. It's interesting reading, but I kept tearing up as some of the descriptions of symptoms/problems are exactly what I've experienced. If I don't get a diagnosis of Cushing's Disease/Syndrome, I will be completely amazed. If you're interested, her blog is at http://judcol.blogspot.com/ and she has links to lots of other blogs. (If you want to get a chronological read, make sure you go to the archive links on the right-hand side and go back to the beginning). I haven't read all of it yet (the whole concentration problem), but I'll be reading more on a regular basis.



Again, any news will be shared. Love to all!

Another Monday

Well, here I am again. Staring at my phone, like that will make it ring faster. I'm hoping I hear from the neurologist sometime soon about my test results so we can figure out a plan of attack. My guess is that my left adrenal gland is working overtime, causing Cushing's Syndrome. I think I'd have to have surgery to remove the gland, but then I should be ok. That's the assumption I'm working under --- let's just hope the test results fit in with that. Otherwise, I think we'll be on another prolonged search for a cause. Again, these are my guesses based on my symptoms and some research on Cushing's.

Meanwhile, on the foreclosure front, we're basically in limbo. According to the person at the lenders' attorney, the process takes at least 3 months in Kansas, and frequently longer. So, we don't have to move immediately, anyway.

I also received an email from my landlady, asking if we'd be interested in purchasing. Apparently, she has been in touch with some company that would offer us some type of lease-to-own. I'm waiting for more information on that. Depending on cost/terms, that could be an option for us.

I'll let you know when I get test results!

Another hit

Well, if the struggles with my health weren't enough, now we're going to have to figure out our status living as tenants in a home going through foreclosure! Last night, we were served with summons (as Jane & John Doe) as defendants in a foreclosure petition against our landlady. Oh, goody. Now we get to figure out our rights/responsibilities and all that jazz. We also don't want to pay rent to our landlady if she's not paying the mortgage, so we need to find out how to handle that. I've left a voicemail message with the attorneys shown on the court paperwork.

As for my health, I still haven't heard anything. The headache has been very bad the last few days. It's not any better now, and it's only going to get worse as we work our way through this foreclosure stuff.

I'll update when I know more. Love to all!

Wonderful Wednesday

For excitement, I went and turned in a new batch of urine at the lab. Yay! At least it's a beautiful day outside...of course, part of my symptoms is excessive sweating, so I felt like I'd run a mile in 100 degree sunshine. It's like 70 degrees, and I walked (slowly) across a parking lot. I sure will be glad when this problem is fixed.

When I showed up at the lab, I mentioned that the test was being redone due to an error by the lab. The lab tech looked up the records and discovered (and admitted!) that it was her error with the previous test. While another tech was drawing my blood for the CBC & CMP, I heard her on the phone explaining (I guess to billing) that there had been an error previously. The insurance company shouldn't be getting billed for the new urine test. One bright spot of sunshine, anyway!

So, it's back to waiting for a phone call from the neurologist or his nurse when they get the results. I'm going to assume that's going to be at least a couple of days. I sure wish there was some kind of fast forward ability when waiting for results!

I spoke with the HR people at work. My FMLA-protected leave ended yesterday, so I now am no longer guaranteed my job when I get this resolved. Personally, unless it's months longer, I think I'll be ok. My short-term (full pay) disability pay from the company ends the middle of March, at which time I would go on long-term disability. I believe that's where the Salary Continuance Insurance I have would kick in...I don't remember all the details, but I believe it's not 100% pay, but at least it won't be no pay. They're sending me the information so I can get all the paperwork done and submitted on time if I need it. I'm hoping I wouldn't need it for long, if at all. Of course, that's assuming we have a definitive diagnosis by next week, and get it fixed/removed/medicated/whatever fairly soon after that. Not only do I want to get rid of this headache and inability to concentrate, I want to go to work! Potentially eliminating some of my other (perhaps related) health problems would also be nice.

Keep your fingers crossed and the prayers going that a real answer will be found soon.

Primal Scream

If it wouldn't make the headache worse, I would definitely be indulging in some screaming about now. I went to the neurologist for my follow-up to get the results of the CT scan and 24-hour urine test.

Guess what!!!! The lab did the incorrect test on the urine, so it has to be done again. Joy. Collecting pee for 24 hours is so thrilling, after all. They should have run a test for metanephrines, but instead ran a more common test with a similar name. This happened even though someone at the lab had actually spoken to the neurologist's nurse - and the nurse had SPELLED metanephrines for the lab order! Unbelievable. Let's just say that both the doctor and I were decidedly unhappy about this. So, I'll start the collection tomorrow morning and drop it off on Wednesday.

Meanwhile, the radiologist's report on the CT scan indicates my spleen is "moderately enlarged" but gives no actual measurements. It also states the left adrenal gland is "slightly enlarged" and lobular (I think that was the word) in appearance. When the doctor told me that the spleen drains into the liver, I mentioned the slightly elevated bilirubin levels in the blood test done a few months ago. He indicated that the spleen problem and bilirubin levels could potentially be linked. That test was done in November. He ordered another CBC (Complete Blood Count) test to get current levels of all the usual stuff in the blood. He also ordered a Complete Metabolic Profile (CMP) blood test. This test could indicate potential liver problems, among other things.

When I drop off the urine on Wednesday I'll have the blood drawn while at the lab. Then I get to wait for them to call with the results. Hopefully, the CORRECT tests will be completed.

Now, I wasn't too sure what all these tests/terms were so I did some research. The high points are below. All of this info is from www.labtestsonline.org which gives much more detail about a lot of these terms, if you're interested. The comments in italics are mine.

• Urine metanephrine testing is primarily used to help detect and rule out pheochromocytomas in symptomatic patients. It may also be ordered to help monitor the effectiveness of treatment when a pheochromocytoma is discovered and removed and to monitor for recurrence.
• Pheochromocytoma: Tumor that causes excess production of epinephrine (adrenaline) and norepinephrine and usually occurs in one or both of the adrenal glands but may also occur elsewhere in the abdomen. (This is a further check for adrenal problems, indicated by the slightly enlarged left adrenal gland seen on the CT).
• Urine metanephrines are ordered when a doctor either suspects that a patient has a pheochromocytoma or wants to rule out the possibility. He may order it when a patient has persistent or recurring hypertension along with symptoms such as headaches, sweating, flushing, and rapid heart rate. (I have all these symptoms).
• While metanephrine testing can help detect and diagnose pheochromocytomas, it cannot tell the doctor how big the tumor is, where it is, how many tumors are present, or whether or not the tumor(s) are benign – although most are. Even small tumors can produce large amounts of catecholamines.
• The CMP is a frequently ordered panel that gives your doctor important information about the current status of your kidneys, liver, and electrolyte and acid/base balance as well as of your blood sugar and blood proteins. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed. (This is another check for adrenal gland problems).

I'll post more information when I get any. Until then, love to everyone!

Thursday already!

Just the same old stuff here. Nothing different. I wish I had something new to share! At least the wild swings in outdoor temperatures don't affect me much...other than making the weather forecasts more interesting. The headache has been pretty steady the last few days at just below the terrible level. Or my pain tolerance has increased and I just think it's below the terrible level. I'm not really sure any longer. The headache's been around so long that it's getting hard to quantify how much it hurts. I don't even remember what it's like to not have the pain. I sure hope it is a problem with my adrenal glands...at least there's some things to be done to try and counteract those type of problems.

No more info here. Hope everyone's staying warm and healthy!

Just another day

Hi! Sorry for the late update, but I was hoping something wonderful, interesting or different would happen to make this more fun to read. Sorry, no such luck. Just another day of waiting. Still no results, still have the headache. Nothing new to report at all. Check in with you later!

Monday Magic

Happy Monday!
I hope everyone had a happy Valentine's weekend. Bobby and I enjoyed a nice quiet weekend at home. Of course, it had to be fairly quiet as the headache was pretty bad, and still is. It is covering a smaller area, but is much more intense. I sure hope the latest tests lead to a diagnosis....and that the diagnosis leads to a way to alleviate the pain.

I am just so very tired of the headache and the inability to routinely do the things I enjoy.

There is absolutely nothing exciting going on here. I sincerely hope everyone is happy and healthy out there!

Daytona Sunday

Hi, all! Sorry I didn't post anything yesterday, but there really hasn't been any change since Friday. We're just getting ready to watch the Daytona 500. The headache is centered over my right temple currently, and is medium-level intense. I hope to start getting some results information from the neurologist this week. Until then, I'm just in a holding pattern. Still.