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).