16 October 2009

After sleep study

Well, that was fun. :-)

Anyway, they did discover I had a few episodes of "shallow" breathing. Nowhere near the threshold where they test a c-pap machine, though. I also snored some. Doctor still needs to look at results for final diagnosis, then send to neurologist. I got my normal amount of sleep, just not at my normal times. Nice room - even a sleep number bed so it was like being at home in that regard. Tech was amazed I barely moved all night. That's the wonder of a sleep number bed...once you find that number, you don't move much in your sleep.

I had been given good instructions, so showed up with what was needed. Got a free breakfast in the food court at the Medical Mall, too. The tech even gave me tips for getting all the gels and adhesives and stuff out of my hair! She was very good.

She had said that she may be giving me instructions during the night, but once everything was set up, there was no peep from her until morning. I'm assuming whatever episodes I had didn't raise any serious alarms. They would have tried a c-pap machine if I had 30 episodes of shallowness/closing of my airway, but I was nowhere near that number.

Now I just have to wait and see what the recommendations are.

15 October 2009

Sleep Study

Guess what! After hearing nothing since my visit to the doctor, the sleep study folks gave me a call today. I will be having my sleep study tonight. I need to be there by 9:30 pm and will be discharged at 6:30 am. I even get a free breakfast. :-)

So, after about 8:30 or so tonight, you won't be able to reach me. I'll let y'all know how it goes when I get home in the morning. I'll be going to St. Joseph's for the sleep study. Insurance even approved it with no argument, amazingly enough.

06 October 2009

New neurologist

Just got home from my first visit with the new neurologist. She is going to have me do a sleep study to see if I have sleep apnea. She said the sleep apnea can cause headaches. I don't think I do, as I wake up feeling pretty rested and all that jazz. But, she wants to rule it out. So, that will probably take a couple of weeks to authorize, schedule and complete. She also is reviewing records from all my docs to see if any tests were overlooked or should be redone.

No other news. Still hanging in there.

14 September 2009

Another drug failure

Latest drug trial did no good, in fact the headache is the worst it's been in a while. Just got home from a doctor's appointment. I'll stop taking the Bystolic and go back to my old beta blocker. At least the headaches remained the same with that one.

The Bystolic apparently also drove my high blood pressure down so far it was low! Haven't taken the medicine for hypertension since Friday. My blood pressure was UP to 101/74 this morning. When the numbers start looking high again, I'll go back on that med. And, yes, I have a blood pressure cuff so I can monitor it.

I'm going to be calling and getting an appointment with another neurologist (this will be my third). My doctor suggested this one as an acquaintance of his who has had similar headaches for 25+ years says she feels this neurologist may be making headway. Hey, I'm willing to try! My poor doctor feels so badly that he can't figure this out...I know he asks for ideas any time he is talking with other doctors.

Other than the headache, I'm doing pretty well. I seem to be stabilized on my other meds. Life is not overly exciting right now, but at least I have a nice comfy new recliner! Doesn't solve anything, but I sure do like it.

26 August 2009

New drug to try

I went to the doctor today as I was concerned about some swelling in my legs. Looking back at my chart, he saw that I've gained 6 pounds in under 4 weeks. He's having me try a mild diuretic just to see if I'm retaining water for some reason. Bobby and I went out and bought a scale tonight, per doctor's instructions, so I can see if there's a weight loss from the drug.

He asked if I felt fatigued and I told him I don't have much desire to do anything. So, he also gave me a sample of a slightly higher dose of synthroid..he said my thyroid numbers were toward the low end of normal, so he wants to see if a slight boost might help met.

But, the interesting news.....he was at a medical conference last week that was about cardiac issues. One of the doctors, in a talk he was giving, mentioned that a new cardiac drug has been getting some anecdotal reports of eliminating headaches that did not respond to other drugs/treatments. It's a new beta blocker. (I'm already taking a beta blocker, Toprol). Dr. Bernhardt asked this doctor if there was any potential problems in patients taking other beta blockers, like, for instance, Toprol. The response was that there was no problem, just switch the Toprol for the new drug. I got some samples of that to try and I began taking it tonight....hopefully I'll have some kind of answer in a few days. I start out with a small dose, then move up to a higher dose after a few days. I have enough samples for a month. I just hope there's reason to keep taking them that long. The drug is nebivolol, brand name Bystolic. [Info says there's a low incidence of side effects - which include dizziness, headache, fatigue, swelling in extremities, etc.. Of course, I wouldn't know if I had any of those side effects! Thought that was just funny.]

So, wish me luck. Love to all!

22 July 2009

Latest update

I know it's been a while since an update, but nothing has really changed. Headache's still around, still hurts, still no reason why. The trigger-point injections did no good, so canceled my appointment with the physiatrist for any further injections. His only other option was the same thing, but with Botox. Not only is that expensive, I felt that if saline did nothing (if anything, headache was worse for days afterward), why go through the time and expense?

Had an appointment with my regular doctor today. In addition to the headache, trying to deal with it is making my depression worse. So, we're upping my anti-depressant dosage. I quit taking the indomethacin and gabbapentin several days ago - got tired of always feeling slightly loopy from the drugs. So, the headache hurts more without those drugs, but at least I can follow a normal conversation. Notice that's A conversation....more than one person talking at a time and I can't follow worth a darn. When I told my doctor I'd quit those drugs, he suggested I try Lyrica at night. He explained that Lyrica is kind of an "updated" gabbapentin that doesn't have the same side effects. He gave me some samples as well as a prescription to fill if they work. I can only hope.

Meanwhile, I really need to be packing for our move (close on a house this Friday), but I discovered that's not so easy for me. I was going to box up some of my kitchen stuff yesterday, only to discover that when I use the stepstool to reach those things on the top of the cabinets, I don't feel very safe. In fact, I felt decidedly off-kilter and nearly fell. So, I'll wait and try again when Bobby's home so he can steady me or whatever if needed.

That's about the thinking I can do right now. Love to all!

30 June 2009

Trigger-point Injections

Went back to the physiatrist yesterday for a follow-up. Taking Claritin had no effect whatsoever on the headache. I opted to try the trigger-point injections of saline/novocaine. Three shots on each side of my head (high on temple area, kind of behind ear area and in the neck at the base of the skull) were administered. They didn't hurt very badly, more like a quick sting.

I decided to wait until today to send this out so I could report any results, if any. Unfortunately, the headache is definitely no better. In fact, it is worse today than it was yesterday. Since the pain frequently increases/decreases, there is no way to know if the increased pain is related to the injections or not. I have no idea how long it is supposed to take for the injections to work, so I dn't know if these are a failure or not.

That's all I know right now.

15 June 2009

New doctor's ideas

Just got back from my appointment with the physiatrist. No major breakthrough yet. He and the nurse-practitioner both checked my spine for signs of misalignment or whatever, but everything looked fine. Since I've already had all the usual tests he would order, no more tests right now. They had several suggestions, so we're going to try them one at a time.

First, I may be allergic to something in the home, like dust mites or something like that. So, I'm going to try taking Claritin every day for a couple weeks. If it's an allergy-related headache, I should notice a difference.

If that has no good result, he will try some trigger-point injections. Apparently, this involves injecting small amounts of a lidocaine and saline solution into various muscular trigger-points around my head. He said many headaches are alleviated this way and they can be repeated fairly often, if necessary.

The other thing that he suggested was Botox injections. No, not for my face! (Like I'd really care about wrinkles at this time). He said there's no explanation as to why it works, but injections of small amounts of Botox in areas around the head have worked miracles for many people with headaches. The problem is most insurers don't cover the procedure and Botox is expensive.

The plan is:

  • Try Claritin for 2 weeks to see if there's a noticeable change in the headache. I have an appointment in 2 weeks to follow up with that. If it's working, I'll stock up on Claritin!
  • If Claritin doesn't work, I'll try the lidocaine/saline injection thing. (Hmmm, lidocaine is a numbing agent......will my brain go numb? And how would we tell?) :-)
  • If that doesn't work, we'll find out if my insurance will cover the Botox thing and go on from there. They'll also let me know how much the Botox would cost if the insurance doesn't cover it.

Meanwhile, I'll have my eyes checked again, just to make sure there hasn't been some kind of massive change. Since the headache is around all the time, even when I'm sleeping and when I wake up (no glasses for hours), we don't think this could be a cause, but it could maybe be making it somewhat worse. It's time to get them checked again, anyway.

So, no miracle cure, but at least there's a possibility of getting rid of the pain if it's not some type of home-related allergy. Sounds better than trying another long list of drugs, anyway.

08 June 2009


No, I didn't spell the subject line incorrectly. More on that in a bit.

I've continued trying various dosages of the Indomethacin and Gabapentin. They help but don't eradicate the headache pain. I take the Indomethacin at night, so if it makes me sleep it's not an issue. I take the Gabapentin a couple times during the day. It tends to make me somewhat dizzy, but usually it's not awful.

June 15th I'll be seeing a physiatrist. A physiatrist is an expert in diagnosing and treating pain...sounds like my kind of guy! A friend who works in health care suggested getting an orthopedist to check for spinal problems. When I called my ortho's office, they said I needed to see a physiatrist rather than an ortho. Thankfully, there's one in practice at the same medical group. So, spent time on the phone getting everything set up. I then got to go online and fill out the new patient info, medication info, and health history. Much better than filling it all out by hand in the doctor's office!

I know I haven't been doing many updates, but there just hasn't been much of a change. Trial & error on the meds just takes a while. Headache's been bad enough that I haven't gone to the last couple of Wizards matches. I knew I wouldn't be able to handle it. :-(

No other news here. Still working out financing for possible purchase of home across the street. Should have an answer very soon and then we can start working on the price. :-) Sure hope it works out...moving across the street would be much simpler than moving anywhere else. The (foreclosed) home in which we're living has not sold and we just want to get out of here.

20 May 2009

Hmmm, what's this drug do?

Sorry there haven't been updates lately, but not much has gone on. After using the Indomethacin for several days, I had to stop. Not only was it making me nauseous and that type of thing, it was making me sleep 18 - 24 hours/day (I had to force myself to stay awake longer than 30 minutes at a time). Not very functional. It did work very well. Headache was gone, I just wasn't awake to enjoy it. I stopped taking it and my sleep went back to my normal routine.

[And, yes, I was taking the Indomethacin with meals - if it had been just stomach issues I would have stayed on it.]

So, went to the neurologist again today. The Indomethacin does seem to have eliminated the frequent stabbing-type pain, as those have not returned. The main headache is now, for lack of a better word, fuzzier. The pain's there and so intense some days I can't follow a conversation. However, it's as if someone ground off the rough edges of the pain so it's hurts in a different way

We're now going to try taking a much lower dose of the Indomethacin (1/6 what I had taken before) and add in another drug, Gabapentin (generic for Neurontin). Neurontin has been shown to be effective for nerve pain, so I'm going to take Indomethacin at night and Neurontin in the morning and see what happens.

I have not ruled out going to Mayo Clinic, but would rather work with my current doctors until we hit a complete dead end. It seems like it's taking so long, but trying a drug to see if it works is just time-consuming and there's not much I can do to speed up the process.

That's all for now. After driving and interacting with others, the headache is getting worse again. I'll catch up with y'all later.

28 April 2009

Current Medication Experiment

Well, it's definitely either black or white. However, it's white with a "but."

I started taking the Indomethacin last Thursday evening. By Friday afternoon that headache was 99% gone! Yay! I felt sooooo good. Bobby even told me to quit smiling, he wasn't used to it. However, by Saturday I had a headache again. It was nowhere near the intensity it had been before and the stabbing sensations were gone.

The headache has been slowly increasing in intensity, but it's much more localized and the stabbing feelings have not returned. However, the main problem has been some severe stomach upset, nausea and tiredness. I'll sleep for 12 hours, then be ready to go to sleep again a few hours later. It felt like a flu virus or something similar. However, in re-reading the info sheet that came with the medicine, I noticed that these symptoms were listed in the area for "If you have any of these symptoms, stop taking the NSAID and call your healthcare provider." So, I will NOT be taking the Indomethacin for the next couple of days. If the stomach issues and tiredness go away, then they were related to the drug. If they don't, then I managed to pick up a virus or something. I have not been running a fever. In fact, the highest my temp has been is 98.2 - most of the time my temp has been below 98, which is relatively normal for me.

So, I'm preparing for a return of massive headache pain, but hoping for a lack of stomach pains/sleepiness/nausea in the next couple of days. I really just don't feel very well right now.

I'll update when I have some kind of answer.

23 April 2009

Yet Another Medication To Try

Well, I went and hung out with my neurologist again today. After having me describe my headache in detail again and looking through my chart again, he decided it sounded enough like something called a "Sjaastad headache" to try the only diagnostic tool for that type of headache. Oddly, the only way to determine if a headache is of this type is to take a specific non-steroidal anti-inflammatory drug (NSAID) called Indomethacin. Other NSAIDs like Celebrex, Motrin, Naprosyn and similar items have no effect. Only Indomethacin. If the headache responds, then it's a Sjaastad headache. Apparently, the effect (if there is one) will be fairly quick and decisive. A black or white difference, no grey area. By next week, I will notice a dramatic lessening of the headache or I won't. There won't be any of the "well, it might be a little better" type of feeling. I'm to call his nurse next week (he won't be there) and let her know if the Indomethacin worked. He has prescribed a large daily dosage so I can find out very quickly if it's working. He did say if side effects (nausea, constipation or diarrhea, upset stomach kind of thing) are too much, to cut down the dosage. I have 90 pills...and they should be gone in 2 weeks! If it works, I can refill it. If it doesn't, then it makes no difference. If it works, the longer-term dosage would be lower. I don't know how long I could/would stay on it. (Note: I'm allergic to Naprosyn, one of the other types of NSAIDs, so I guess I'd better be extra vigilant looking for reactions to this one).

If the drug does NOT work, he said we will treat it as an "atypical migraine" and see if it responds. I have no idea what that would be. I take it one step at a time.

What we do if it works but I'm allergic to it is anyone's guess. Naprosyn gave me terrible hives and it is the only drug to which I am allergic as far as I know. None of the other NSAIDs I've taken have caused any allergic reaction.

I looked up a little bit about this Sjaastad headache thing and it appears to also be called a "hemicrania continua" (some guy named Sjaastad was the first to write about it so his name is stuck on it). The description of it is about 90% dead on with what I'm experiencing, but descriptions of other diseases/syndromes have also been 90% dead on only to be ruled out. At this point, I definitely do not get my hopes up.

I dropped off the prescription at the drug store on my way home from my appointment. An hour later we went and picked up the pills (large pretty blue ones!) on our way to the Wizards v Red Bull NY soccer match. Sure is convenient that the drug store is right on our way to almost everywhere.

I took my first dose at the stadium. It does not work instantaneously, I did discover that much. And the headache's bad enough to where I could not stay in the stadium for the entire match. Way too much noise and stimuli for me to handle. I went and laid down in the car about the 65th minute. For those who don't know, there are 90 minutes in a match. At least my boys in blue won 1-0...by they played like shite. Oh, well. A win is a win and we'll take it.

I'll let y'all know how this drug works. Fingers crossed and prayers going for me, please!

22 April 2009

Well, That Didn't Work

Ok, the great Prednisone/Topamax experiments did not work.

While taking the Prednisone, it seemed the headaches were slightly less severe, but it was such a slight difference I think it was more hope than actuality. Darn.

As for the Topamax, it may eventually have been able to help me. However, by the time I was up to 4 pills/night (total of 200 mg), the side effects were too much too take. I was so loopy that I almost felt drunk (without the fun of tequila!) and had an even more difficult time concentrating on such hard items as, um, sitcoms or conversations with Bobby. So, Bobby and I made a decision to wean me back off the Topamax. At 3 pills/night the side effects are manageable, but they don't seem to stop the headache, so what's the point?

As for the headache, the base pain level (the constant pain that's always there) is moved up from a level 5/6 to a 6/7. What used to be occasional stabbing points of pain have now evolved into the feeling of 4-legged animals (ranging from goats to Clydesdales to elephants) tap-dancing on my head without any prior notice. And, yes, they are wearing the metal taps on their feet. All four of their feet. And sometimes they are not dancing solo. And they are definitely not light on their feet.

So, I'm going back to the neurologist tomorrow (Thursday). I want to go over everything with him and see if there are some other tests/procedures we can try or even if it might be beneficial to redo some now that it's been a few months. I will let y'all know what we figure out.

Oh, I did act like a somewhat normal human being over the weekend. We did have a couple people over for a "test run" of Soccer Saturday for the first time in a long time. It went ok, though I did have to basically check out of the conversation after a fairly short time, and there was no way I could actually keep up with the 2 or 3 games on the televisions at the same time. That ability is definitely beyond me at this point in time. Oh, well.

15 April 2009

Nothing to Worry About

Just a quick note to let you know the mammogram confirmed my doctor's supposition - nothing to worry about. The lump is just some kind of normal breast tissue lump, not even a cyst! My guess is that 30 or so years of wearing underwire bras forced some of that tissue to just reorganize itself. ;-)

The full report will, of course, be sent to my doctor, but I can't imagine it's going to contain much more information than what I was told. And, wonder of wonders, I had the mammogram, ultrasound and results all in under an hour! I had forgotten there were actually some medical things that got answered that quickly!

I started taking the Prednisone yesterday and upped the dosage of Topamax, too. No change yet. I'll keep y'all informed of any changes. Changes or not, I'll be calling my doctor next week to let him know what's going on and to determine our next step, per his directions.

Latest Doctor Visit - Part 2

Ok, this is proof I truly have bad headaches and am not fully functional...

After all the headache discussion, there was actually a second part to my doctor visit Tuesday. Joy of joys, on Sunday night, I had noticed I had a rather large lump in my left breast. Oh, goody. It's on the underside, just above the underwire area in my bra, in an area where I would notice it if it had been there very long, even without my regular breast exams. My first thought was, "Great. Something else to deal with." My next thought was, "Oh, geez, I'm gonna have to get a mammogram. I hate those things." I missed getting mine last year, so I knew that was definitely going to be the first step once I told my doctor.

Anyway, sure enough, my doctor checked the lump and said it felt glandular and told me to get a mammogram and an ultrasound to find out what's going on. He's fairly certain it's some kind of cyst, so we're going to go with his 30+ years of experience/intuition while awaiting the results. The mammogram and ultrasound are scheduled for noon on Wednesday, so at least I'll have answers quickly on this one. I know I'll get yelled at for not telling people about this, but I really don't think it's going to be anything to cause concern.

14 April 2009

Latest Doctor Visit

Hurray! Got my first long-term disability check from the insurance company yesterday. Feels much better to have that money in the bank and know we can pay rent and eat and all that jazz. And, apparently, since it's insurance payments and I paid the premiums myself (not paid by the company I worked for), it's apparently tax-free. :-) I think I just got a raise! The best part is the approval of this means I'm eligible for continued health benefits at the same rate I was paying previously, rather than having to pay the full cost myself. The first check I wrote was for next month's health insurance premiums.

I went to see my doctor today. We're going to see if Prednisone helps with the headaches as the one thing that's been consistent throughout all the tests are two indicators of some type of inflammation in my system. Unfortunately, we don't know where the inflammation is, though I did give the doctor a laugh.
Doctor: "There's definitely some type of inflammation in your system."
Me; "That's it! I'm not fat, I'm inflamed!!!!"
Doctor: [laughing too hard to respond]
So, started on the Prednisone this afternoon and should know by Thursday if it is going to help.

Also, the Topamax has not been helping, even at 2 pills/night. He told me to try 3 pills/night and 4 pills/night starting on Saturday if it's still not working (and the Prednisone isn't working, either, by that time). It's another of those trial-and-error things.

At least the depression is back under control since I've returned to my normal dosage of Zoloft. Life is much better on this dosage!

Many people have been offering suggestions to me and I discussed a couple of them with my doctor. The first one we discussed was the usefulness of me visiting a chiropractor. My doctor shook his head so hard I thought it was going to fly off his neck! He explained that, in reality, any GOOD chiropractor would listen to my entire health history and then refuse to do anything (too many unknowns along with the "knowns"). He said the problem would come when a chiropractor did not really pay attention to my health history or did not ask all the proper questions and/or follow up on the answers. So, I will not be going to a chiropractor any time in the near future.

I then asked about going to the Mayo Clinic. My doctor said, "I hate to bring up the practical issues, but would your insurance cover it?" When I explained that I would verify coverage before going, he stated that it might be worth the trip. However, he would like to discover if there's a way to find out if they would accept the results of all the MRIs/CT scans already done rather than redo all those expensive tests. New additional tests would make sense, obviously. He said that the doctors there are really good, but just because you hear all these wonderful stories does not mean every single person who goes to the Mayo Clinic is able to find answers. I would need to be prepared to come away with no more answers than I have now. If I decide to go, he would be willing to help me with whatever I would need. I think I will hold off on that decision for now.

The headaches have been really bad the last week or so. I really hope the Prednisone helps. I've felt like there's an elephant standing on my head most of the time recently and there have been times when a horse has kicked me just under that elephant's foot. I am sleeping pretty well most nights now, though I am still awakened by the headache frequently during the night...I rarely go to bed before 1:30 a.m., though.

No other news from here. Hope everyone is doing well!

08 April 2009

Long Term Disability Approved!

Hallelujah! I got a call from the insurance company today to let me know my long term disability claim was approved. That takes some stress away, let me tell you. Since I'm still without a diagnosis, it's approved through June. If I'm still not working then, there will be more paperwork and stuff to complete. I would also be required to apply for Social Security Disability at that time. I may go ahead and get the forms and stuff for that as it may take me that long to complete them! I hope I'm working by then, but at this point I really don't know.

I'm still waiting to see if the Topamax helps with the headache. I'll be upping the dosage tonight.

Thanks for all the prayers and good thoughts....keep 'em up!

07 April 2009

Patience, patience!

Apparently, teaching patience is one of the insurance company's tenets. Even though my doctor faxed everything they needed last Wednesday (for the second time), the paperwork was just submitted for approval today! So, it will probably be Thursday before I find out whether or not I will have any income. As if I was not already stressed enough. I just hope it is approved - not only for the money but so I will be able to continue my health insurance at the same rate I had been paying. Good thing my doctor and I had decided to move my antidepressant dosage back up!

Topamax may or may not be helping yet. The headache was really bad the last few days, but it is less awful today. I also experienced some of Topamax's side effects (dizziness, lightheadedness) yesterday. However, the headache's intensity changes frequently and I've been dizzy before, so I am not sure it is all due to Topamax. Another day or so at this dose and if I don't see concrete changes, I'll increase the dosage and hope for the best.

The stress of all this is really getting to both Bobby and me. There are things we would like to do, but we do not want to spend the $$ until we know what is going on with my disability. So, we're just staying home and eating at home a lot. This wouldn't be so bad if I was able to cook, but when the headache's bad or I'm really dizzy, I do not trust myself in the kitchen. Bobby's been great, cooking what he can, but his repertoire is even more limited than mine! Kind of ironic, we sit around watching all these cooking shows on television, eating our bagged/boxed/frozen/prepared meals. ;-) It gives us a laugh, anyway!

Once I have an answer from insurance or some medical breakthrough, I will let y'all know.

06 April 2009


Ow, ow, ow, ow, ow, ow, ow, ow, ow, ow, ow...

'Nuff said.

No word on anything else right now.

01 April 2009

General Update

I went to my primary care doc today. I'll tell what we discussed/did after I summarize what's been going on.

  • The endocrinologist wanted me to wean off Zoloft and try Pristiq, thinking Zoloft may be causing symptoms. However, I am having difficulty slowing/stopping Zoloft. I mean, I take an anti-depressant for a reason! My attitude, appetite and sleep were all being affected, not to mention the bouts of crying (including in my doctor's office today).
  • I've had CT scans of my head, chest, abdomen and pelvis. I've had an MRI of my head, as well. The only abnormal findings were that my spleen and left adrenal gland were both slightly enlarged. All tests have shown that there is nothing inherently "wrong" with these organs. I am to have another CT scan in 6 months to make sure the adrenal gland is not getting any larger, but it is most likely just some kind of fatty deposit on the gland.
  • I have had all kinds of blood and urine tests. Everything which has been tested has come back "normal" - and we all know I am NOT normal. :-)
  • The headache has been practically non-stop since early December and I have not worked since December 5. No drug I have tried has done anything to lessen the headache pain. Sometimes it is drastically affected by noise levels or over stimulation, but other days the intensity does not change no matter what is happening around me.
  • My short-term disability ended March 19. No decision has been made by the insurance company regarding my long-term disability claim. I officially have no job now and only the approval of my long-term claim will allow me to continue my health insurance at the same amount I had been paying. Otherwise, I have no insurance after April (unless I use COBRA and pay the entire amount). [Note: 3 boxes containing the personal contents of my cubicle/desk were delivered on Monday, so the "not working" is very real.] This, of course, will make it nearly impossible for Bobby and I to pay monthly bills. We're ok for April, but beyond that it is hard to say.

Now, here is what happened at the doctor's office today:

  • Due to the very obvious emotional and physical effects of reducing the Zoloft dose, the doctor said not to try and make a switch right now. He said the odds of Zoloft causing problems after this amount of time were pretty slim and were definitely outweighed by the negative consequences of trying to switch anti-depressant types at this time. So, I'm going to work my way back up to my regular Zoloft dose. This should definitely help my coping abilities.
  • My doctor agreed with the plan to have the adrenal gland checked in a few months. Since all the other tests are normal, he does not think there is a reason to pursue anything else at this time.
  • My doctor also reassured me that he believes this is a real, physical problem for me. It is not psychological or something else. He has been my doctor for a long time and knows that if I have pain, it is real. He told that if I feel lost/hopeless or like I am losing my mind, to remember that I am not imagining all this.
  • He wants me to try taking Topomax to help with the headache. However, he wants me to check with the neurologist first to make sure there is no contraindication about the drug. Topomax is an anti-seizure drug, but has also shown to help with headache pain. I have the prescription, along with a card to make it only $5/month prescription (otherwise it is a lot more). Once I hear back from the neurologist, I will get it filled.
  • The nurse had told me when I got there that the disability forms/medical records had been faxed to the insurance company. However, when I told the doctor a decision had not yet been made, he took me to his office and called the insurance company. There was no indication in their file that the fax had been received. They asked if the doctor could send the fax again. This time, use a different fax number and break the fax down into several smaller faxes (it was 35 or so pages). The insurance rep said that, once the records are received, it should only be a day or two for a decision. My doctor asked if calling/checking on Friday would be appropriate. He was told that was reasonable. So, the nurse was re-faxing the paperwork when I left and the doctor told me to check the status Friday and to call and let him know if there was no decision yet. He will call the insurance company again, if need be. Now, I just have to hope it is approved! It will pay me 60% of my salary as well as continue my eligibility to some benefits for up to 30 months (which I hope I do not need). Then, once this issue is resolved, I'll just need to find a new job. No problem, right?

The endocrinologist's nurse just called with my latest blood test result. Once again, I'm "normal"! This was the estrogen level check to see if, perhaps, I was entering menopause. Apparently I'm not. Gee, does that mean I'm NOT as old I feel right now?

Thank you to all of you for your thoughts, prayers and offers of assistance. They are all appreciated. Please continue to keep me in your prayers...they're all I have right now. I don't currently have plans for more tests, but once the depression is stabilized again, I'll work with my doctor to figure out what else can be done.

30 March 2009

One test result

Just got a call from the hematologist/oncologist about my results on the serotonin level blood test. Of course, the level is normal. What a surprise. He's out of ideas right now as far as other things to test/check. His nurse said, "You're a mystery!" Now, as much as I enjoy mysteries, I am NOT enjoying being one!

Still waiting for return call from endocrinologist about estrogen level blood test.

I'm also going to go see my primary doctor sometime this week and go over all this stuff with him. Perhaps he/I/we can figure out something to do/check/test if we look at everything all at once.

I'm almost out of ideas. Note the "almost" - I have come up with another possibility while searching desperately for answers on the Internet. [By the way, it's hard to do complicated research when you can only keep at it for 15 - 20 minutes at a time! I end up having to take breaks more often than I can do heavy research. Oh, well.]

Still waiting for an answer as to whether or not I am going to receive long-term disability payments. Sure hope so, otherwise it's going to be difficult to pay for anything with no money. My case status is still officially "pending" at The Hartford.

23 March 2009

Endocrinologist followup

Another day, another non-answer.

The free cortisol in the urine test was well within normal range. Cushing's can be cyclical, but the doctor did not seem concerned about an adrenal problem at this point. He said the lobular appearance of the adrenal gland, based on the size, is just a lumpy bit of fat. There's no reason to do anything about it unless it grows to larger than 4 cm (it's 1 cm now). At that point, ,it would need to be removed. I'm to get the abdominal CT scan done again in 6 months to see if it has changed in size.

Meanwhile, back at the ranch, we're once again at square one in finding out what's causing all these symptoms. This time, we're going to test some theories on two different fronts.


The majority of my symptoms could be explained by the onset of menopause. I had blood drawn for a test to check my estrogen level. (I could have sworn I had this test way back in November or December, but I'm not sure). If it's low, then I go on estrogen replacement stuff. (If these results come back normal, I'll probably talk with the doctor about doing another cortisol test).


The majority of my symptoms could also be explained as a possible side effect of my anti-depressant (Zoloft). Even though I've been on it for about 10 years, it could potentially be the culprit. I know that right after I started taking it I had night sweats, but it was only for a couple of weeks and then it went away. So, we're going to try another drug (Pristiq). Unfortunately, this will be a 4-5 week process. I have to wean off the Zoloft over the next couple of weeks, then start taking the Pristiq. I then would have to take Pristiq for 3 weeks or so to find out if it's working. The doctor said Pristiq works in essentially the same way, but is "cleaner" than Zoloft. Makes sense, since Pristiq is a much newer drug than Zoloft. I have 3 weeks worth of samples to test it out. He also gave me a prescription for it. If I try it and like it, I get the prescription filled. If it doesn't work or there's some other problem, then I just go back on the Zoloft. In addition to the samples, he also gave me a card to save money on my prescription co-pay if I do get it filled. I'm sure there's no generic for this drug yet, so I'll have to pay a much higher co-pay than I do currently. I figure it's worth a try. I know Bobby will let me know if there's a problem with the new drug. (Apparently I'm rather irritable, snappish and no fun when the anti-depressant isn't working!)

So, I'm back in the wait-and-see mode. I'll call his office next Monday if they haven't gotten back to me yet about the blood test results on the estrogen level.

As for how I'm doing, I'd have to say so-so. I am so tired of not having an answer, along with waiting to find out if my long-term disability insurance claim is being accepted, along with trying to figure out if we need to move next month. Good thing I'm on blood pressure meds....I'm sure it'd be soaring otherwise! I'd love to back to work, but when I try anything mentally taxing, I can't handle it. The fact that my sleep is all messed up really doesn't help anything. Sadly, I'm even getting used to very little or a whole lot of sleep, with rare nights of somewhat normal sleep. All of it's interrupted by headache pain, anyway.

I'd love to spend time with my friends and family, but it's difficult to make plans when I may end up with a headache so intense I can't do anything. Trust me, if there's anything someone can do for me, I'll let you know. Otherwise, I'll just stay holed up in the house. I did go to the Wizards season opener on Saturday, with earplugs. I love the drums, but my headache does not. (Oh, yeah, along with the usual drums from The Cauldron, the Marching Cobras were the half-time entertainment! Even more drums.) With the earplugs, it cut down most of the extreme noises, allowing me to concentrate on the game. Of course, even that type of concentration is affected. I lost track of the ball/player multiple times, but it was still better than watching it on television.

18 March 2009

Call back from hematologist

He said he'd call me by Monday, but didn't call until today. He wants me to get a blood test to check my serotonin levels, to go along with the cortisol urine test already at the lab. I'll go by his office and pick up the order tomorrow and go get blood drawn. He spoke with the endocrinologist, who looked through the tests and found where a urine test had been done which would have included these levels, but the pH level noted on the results could have made the results less than accurate. The blood test will be more accurate, anyway.

No other information. Just hanging out and hanging on, sometimes by the tip of my nails. Headache's the same. Of course. If I wait until I'm tired and take the Ambien, I do sleep longer and a little more deeply (though I still wake up during the night). However, if I take it and just crawl in bed, it doesn't seem to help me fall asleep at all.

If/when I have more info, I'll pass it on.

13 March 2009

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.

12 March 2009

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.

11 March 2009

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.

10 March 2009

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!

09 March 2009

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!

08 March 2009

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).

06 March 2009

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!

05 March 2009

Test results


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!

04 March 2009

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!

03 March 2009


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!

02 March 2009

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!

27 February 2009

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!

25 February 2009

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.

23 February 2009

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!

19 February 2009

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!

17 February 2009

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!

16 February 2009

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!

15 February 2009

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.

13 February 2009

Friday news

Ok, the news.....there isn't any. Everything's the same. I slept a LOT yesterday, headache was bad most of the time I was awake. For excitement, I've been saving my pee to take in to the lab today. About another hour and I'll be done. Sure hope they find what they're looking for!

No big plans or anything. Just the trip to drop off the pee and I'll be back home.

Right now, the headache is present, but it's not as painful as yesterday. I just hope it stays that way.

If/when I hear anything, I'll pass it on!

12 February 2009


Ouch. I got sleep, but woke up to a monster-size headache. Going to be a muted tv day for me! But to cheer me up, I get to collect my pee today......it just doesn't get any better, does it?

That's it for now.

11 February 2009

CT scan

Hello, again!

Well, I'm all done with the CT scan and it only took 1 hour longer than it should have! Last night, I drank a bottle of the barium-banana drink as instructed. When I got to the hospital for the test, they questioned the abdomen/chest CT, as they normally would include the pelvis with the abdomen. They called my doctor and were told to do the scan as they would normally proceed. So.....that meant I needed to drink another barium-banana drink and then WAIT for an hour for it to get through my system. Oh, goody.

So, I drank another bottle of the stuff and sat around and suffered through Regis & Kelly on the tv in the waiting room. Finally, they came and got me for the scan. Hallelujah!

As we're walking to the room, the lab tech says that the person doing the CT scan is very picky - she'll want me to drink more of the barium-banana stuff. Yup, she was right. After they got the IV in place, I got to drink some more stuff. Thankfully, I didn't have to drink another whole bottle, just about half of one. That way, there was more of the barium in the upper part of my system during the CT scan.

So, they ran me back and forth through the machine, then injected a dye into the IV so they could get a scan with the contrast dye. The dye isn't really a problem, except that when it moves through the bloodstream, you get a sensation like you need to urinate. Very weird feeling, but it doesn't last very long. So, back & forth I went again, and we were all done.

Headache, of course, was with me throughout. It really didn't like Regis' voice, either. I stopped and got some breakfast on the way home, as I was starving! (Did I mention I couldn't eat anything after midnight?) The barium-banana stuff was not suitable substitute for breakfast, that's for sure!

Oh....and the barium-banana stuff may make me have loose white bowel movements today as my system eliminates it. At least I have something to look forward to!

On my way out of the hospital, I went by the lab to pick up the jug for the 24-hour urine collection I need to do so they can do the test for the stuff the adrenal glands secretes. I'll start that tomorrow, then take it to the lab on Friday. That will be fun, don't you think? And I get to store it in the fridge - - -even better! (Bobby - don't drink from the orange pitcher.......)

So, all my excitement for the day is done. US-Mexico World Cup Qualifier game is on tonight, so my evening's excitement is scheduled, too.

Early report

I go in for my CT scan in about an hour, so I'll update when I return. Right now, head hurts, I don't like it, and I'm ready for it to be gone. You know, the usual.

10 February 2009

Test scheduled

I go in for the abdomen & chest CT Wednesday morning. I have to go by there today to pick up the barium because I apparently need to drink it at some point before I go in for the scan. I'll go do that later this morning. That will probably be my excitement for the day! I just hope this scan helps to diagnose the problem. I am soooooooooooo tired of this. I'm even more tired of this stupid headache.

Did anyone else feel like your home was going to blow away last night? It was awfully windy and noisy last night. Just all kinds of odd, loud sounds late in the night...as if my head didn't already hurt! I thought I'd wake up this morning in Munchkinland or something.

No other activity here. I'll let y'all know if anything exciting happens.

09 February 2009

Neurologist #2

I just got back from my visit to the new neurologist. Vastly different visit than with the first one! He looked through all the health questionnaire stuff I had filled out, asked some questions about things he read and things he noticed about me. He looked at the CT scan (and explained them!) and the MRI test (in another room on the computer, as that test was on a CD). He said the "spots" were very non-specific and he thinks the radiologist had "over read" them a bit.

However, after asking me to clarify some of my responses to the health questions, he said that he was wondering if most/all of my health problems could be related to some sort of problem with the adrenal gland! He said it's rare, but something going wrong with the adrenal gland could cause:

High blood pressure
Flushing (of the face)

Oh my God! Could it really be that all this stuff I've been dealing with (some of them for years) could all boil down to one problem?!?! Well, we're going to find out. I go back and see him in 2 weeks. Between now and then I'll have a CT scan of my chest & abdomen and some kind of 24-hour urine collection test to check for adrenaline levels. Right now, I'm going to do some research about the adrenal gland to educate myself. At least I feel like this neurologist cares about what's causing the pain. Much better feeling than the first one.

Please pray that an answer is discovered from these tests.

08 February 2009

I'm full

Well, Bobby got me up and moving so we could go eat at BD's. We've discovered if we get there right after they open there generally is no line. That way we get in and out quickly - especially good with my headache as BD's is not a quiet place. We both are stuffed and ready to just sit and watch Daytona Qualifying, so that's what we're doing.

Headache's still intense and I'm also lightheaded again. Sure am glad I'm seeing a new doctor tomorrow!

07 February 2009


Well, I got lots of sleep again, but only because when I would sit up my head would hurt and I would feel dizzy. So, I would lay back down. I'm up now, showered, and in pain. Nothing else is going on. Just waiting for Monday...it's not too far now.

06 February 2009

Red Friday

Wear Red for Women's Heart Health

Yup, I'm actually wearing red while I sit around the house. At least I can participate in something!

Normal (for me) sleep last night, thank God. Headache hasn't changed much since yesterday except to center the most pain right between my eyes. Great.

No other things of importance (or even non-importance) have happened to me. SSDD

I'm just patiently waiting for my appointment with the new neurologist.

05 February 2009

Up early!

Well, I knew I'd regret all that sleep yesterday...I got about 4 hours of sleep last night and I'm awake already. Oh, well. I'm hoping I'll get a nap later, but I can't fall back asleep right now. The headache is already building, but I'm hoping it's about at it's top pain level because it really hurts already. I really don't need it to get any worse.

Nothing else has gone on here. Just the same ol' routine. It sounds like the weather's going to be nice for a couple days, so we may be able to open doors/windows and enjoy it for a bit. Odd for February, but I'm not complaining! Near 70 degrees for the next few days. Of course, it's going to get cold again after that. Can't have everything.

If I think of anything amazing to tell, I'll be back. Ciao!

04 February 2009

Sleep is good

Wow! I either can't sleep at all or I sleep and sleep and sleep. I finally got out of bed a little before noon today. I feel rested, but a tad disoriented. I'm having lunch now, so getting food in my system I'm sure will set me straight.

The headache was TERRIBLE yesterday. I was literally curled up in the fetal position in the recliner when Bobby got home. I was whiny and gripy, but he made me some dinner and brought it to me. After I ate, I fell into a sound sleep in my chair for several hours and woke up in pain, but not quite as grouchy.

So far, the headache isn't as bad today, but since I've been up such a short time, it's hard to judge. I just hope it doesn't get as bad as yesterday - I hate those days.

Nothing else going on here. I'm off to eat. Bye!

03 February 2009

Trash Day

I'm sure all of you were wondering when our trash day was! I tried to come up with a moniker for the title, but my brain definitely is not working, so "Trash Day" it is.

The headache's staying pretty intense almost all the time. It's also covering a larger area of my head. It's making it more and more difficult to be nice. Good thing Bobby understands and when I start wincing, he knows it's time to stop conversation for a while. I did manage to do some laundry and a load of dishes yesterday. I also made dinner.....though I was definitely ready to get out of the kitchen when the hamburgers were done. I was sweating and felt not quite light-headed, but like a curtain was slowly being pulled over my mind. My hands were shaking and Bobby made sure I was ok to eat. Less than a week now to the appointment with the new neurologist! Here's hoping I can wait that long and that the pain doesn't keep getting worse.

Well, I better stop now. The headache's already making itself known (like I hadn't noticed). Nothing else going on here.

02 February 2009

Groundhog Day

Well, I'm awake after 4 or 5 hours of fitful sleep and I'm in time to see if the groundhog sees his shadow. Woo-hoo. Live on tv, too. Technology making us proud, again.

My friend, the headache, has been at a higher level of pain since yesterday afternoon. It made it difficult to fall asleep, and then I couldn't stay asleep for any length of time. So, I got up out of bed. I'm hoping I fall asleep in my chair sometime today as I still feel in desperate need of sleep.

At least the football game was good last night....though I didn't listen to most of it (earplugs) because of the crowd noise. There are just certain sounds that just feel like they're echoing inside my head.

Before I go, here's what Punxsutawney Phil predicted (I'm not sure of the spelling, but it's something like that)..............6 more weeks of winter! Yes, the "Inner Circle" out east declared the groundhog saw his shadow. Amazing, since that part of the country was cloudy. :-)

01 February 2009

Super Sunday

Hello! It sure is a nice day outside, isn't it? Yeah, that's right, I went outside today. :-)

Slept in a bit, then Bobby and I went to Target to get some Mountain Dew and a game for his Xbox 360 that was $20 off. Good thing we went when we did as there were only 2 of the games left when we got there. Pepsi products were on sale, so we grabbed some as Bobby was really suffering from a lack of caffeine. We then went and had lunch at Olive Garden, so we're both very full right now.

Of course, the headache's still there, I don't really feel all that great and the casual strolling around Target brought on some serious heat...I was just burning up. Oh, well. I feel better now, though I wish the headache would ease up some. I mute the tv when Bobby's not around, but reading the closed captioning only lasts for a bit before the required concentration starts to make the headache worse. Of course, many shows are just as good or better without the sound!

We'll just be hanging out watching the game tonight. Nothing exciting. Have a good day, everyone!

31 January 2009

Weekend already?

Wow, time flies when you're having fun..........yeah, right.

I don't feel well this morning. It started last night and it's only marginally better now. I'm hungry, but it feels like if I actually eat anything it won't stay down. The headache is still at a pretty high pain level, so I'm sure I'm not very good company. I took a nap late yesterday afternoon, getting up about 7:00 p.m. and was back in bed shortly after 10:00. I slept almost another 9 hours and only got up because I really needed something to drink. I feel almost dehydrated so I'm imbibing in a lot of water.

Nothing else much is going on. Just sitting around. Have a good day, everyone!

30 January 2009

Another Friday

Well, nothing has changed since yesterday. Now I just get to wait until Feb. 9th to see neurologist #2.

Still have the headache. Still want it gone. Still no relief from meds.

Oh, well.

Have a wonderful weekend!

29 January 2009

Oh, boy!

Well, I did some research and found another neurologist with privileges at my favorite hospital, nearby office and no black marks on his record (per State Board of Healing Arts). I called and explained to the receptionist that I was switching neurologists and wanted to get in as soon as possible. When I explained why I was switching, she said "Oooo. Ok." and found an appointment for me on 09 Feb. It's another week, but at least I have a set time. Now I just have to get all the test results and stuff that does exist over to the new doctor before my appointment. I've left a message for my primary doctor as I'm sure he'll do what he can to get info to the new neurologist.

You know, my doctor had asked my opinion of the first neurologist yesterday when I was talking with him. I told him, "He's nice enough, but he really doesn't seem all that concerned about the pain I'm in." My doctor said that perhaps the neurologist doesn't have good people skills. Well, that may be true, but why does the nurse sound all pissy when I call? I get the feeling that patients really keep her from doing something. What? I don't know.

Here's hoping the new neurologist is able to do more for me. It sucks to be off work, but unable to do much because of the pain. When I went to the doctor's office yesterday, it was only the 2nd time I've driven in 6 weeks or so. Both the trips involved no highways or major traffic, but my head was excruciatingly painful by the time I got home. No way I could drive in traffic or on a highway! So, I'll get myself to nearby locations (new neurologist is just across the highway, by the hospital), but leave the driving to others for longer routes.

Happy Thursday!


Ok, so here's what's happened:

Yesterday afternoon, I went by my primary care doctor's office to drop off new disability leave paperwork to be completed. The doctor took me back to one of the rooms to review what was going on. I updated him on the latest wait - for blood test results - and he asked where I had the blood drawn. It was at a lab that's also the lab company they have on site. So, he went and asked the lab tech if she could check on results from my tests. She did what was necessary, discovered the results were complete (as of yesterday), and they actually faxed the results to my primary doctor within minutes. She said they were also faxing the results to the neurologist's office. The doctor looked over the results, said nothing jumped out at him, but that the sed rate was still elevated. ????

I told him that the neurologist's nurse had told me before that the sed rate was complete and it was normal. My doctor said, "No. It's elevated." ????

He explained that the elevated sed rate indicates only that there is some type of inflammation in my system, but does not diagnose anything else. Other tests have to be done to determine the specifics. When I told him that I had received the denial notice for the CT-A based on the fact that the head MRI was "normal" he was amazed. He went back to the MRI report where it very specifically stated that the result was "abnormal" with unknown white areas in the brain tissue and a cyst in the left sinus. I'll be contacting the insurance company today. But why had the neurologist's office submitted paperwork for approval indicating the MRI was normal?????

So, yesterday afternoon I gave the neurologist a chance to look over the blood test results. He never called This morning, I called and when the nurse called me back, she said that the results were not received yet!!! Weird, as I was looking at a copy of the results at the time. I don't know what's going on with the neurologist, but I'm going to find another one. I have lost all faith in this one. At least I can show up with my CT & MRI results, along with 2 rounds of blood tests, for the new doctor!

So, now I have a headache (figurative) to go with the headache (literal) I already have. When I have more information, I'll update everyone.

28 January 2009

Here we go again

So far, no change in how I feel and no further word from the doctors. I'll be calling again today. You'd think they'd just call me every day so I wouldn't call all the time!

So far, I'm evading most of the cold symptoms - lots of fluids are keeping the phlegm moving. I just feel rather washed out and sluggish. Here's hoping that's the worst it gets.

Nothing going on here at all. Being off work isn't much fun when you really can't do anything.

Have a good day, everyone!

27 January 2009


Same stuff, different day. And now I think I'm coming down with a cold or something. No more calls from doctors yet.

26 January 2009

Fed up!


Sorry, had to vent.


Monday, already??

I'm never going to figure out how to sleep with this headache. I either can't sleep at all or I sleep for hours and hours and can't really get ambitious enough to get out of bed. Today it was almost 11:00 a.m. before I woke up, and then only because the neurologist's nurse called! She explained that they're still waiting on most of the results simply because the tests take a lot of time to complete. The only results they got back were for the SED rate, which was normal. (The SED rate test can reveal inflammatory activity in your body, based on how quickly red blood cells settle in a test tube). It's not a stand-alone test, but just a piece of the puzzle. So, at least the results have started coming in.

Meanwhile, the headache is still hanging around. It's now covering a larger area rather than a small localized area, but I seem to be more sensitive to too much activity/noise. I mute the tv most of the time when I'm alone. I also have earplugs I use frequently. Right now, the pain is above my eyes, across the entire forehead and back to my ears.

Nothing else going on here. Have a wonderful week!

25 January 2009

Early morning

Hey! Is anyone awake out there?? I've been mostly awake since about 1:30 a.m. but got out of bed about 6:15....I went to bed about 10:30 p.m. so that doesn't make for much sleep. The pain just kept escalating throughout the day and evening yesterday, and my head just hurt too much to sleep. I'd doze off but then I'd be awke shortly there after. I have a feeling I'll be falling asleep during the day today. Again. Bobby's fighting off a cold and yesterday we both ended up taking naps in our chairs! At least we were wide awake by the time the US-Sweden game started.

We did leave the house yesterday afternoon, though. We went to eat at Longhorn. We both had the parmesan-crusted steak they've been advertising and it was fantastic! The steaks were covered in a parmesan/garlic mixture....lots of garlic! Garlic lovers that we are, it worked out just great. We went and ate in the middle of the afternoon so it wouldn't be crowded and noisy.

At least the 24 Hours of Daytona are on...at least there's something I can put on the tv that doesn't require sound!

That's it for me.

24 January 2009

No news is not good news

Ok, I actually got a call back from the neurologist's office. Unfortunately, it was only to tell me they still did not have the results. His usual nurse was not in and the person covering for her did not seem to know what to do. She said that the nurse would have to look into it on Monday!! So, once again, I'm just hanging around with no information.

Headache pain is staying fairly steady now. Too bad it's at a level that's just this side of intolerable. It also hurts over a larger area more frequently, rather than being kind of a localized pain.

That's all that's happening. Nothing.

23 January 2009

Still waiting

I guess the neurologist didn't get test results back yet...I'm still waiting to hear from him. If I don't hear by noon, I'll be calling back. After all, the lab tech said the results would probably be to the doctor by Wednesday!

Headache was bad all day yesterday and it seems to have picked up right where it left off. I have the tv on so I can watch news, but it'll probably be turned back off soon. I didn't turn it on at all yesterday and even used earplugs to try and reduce the noise. Hopefully I can leave the earplugs out today, but something tells me that isn't going to happen.

More later, if I hear anything.

22 January 2009


I actually got a call back from the neurologist! However, it was just to tell me the lab results have not been received yet. Once they're in, the nurse promised to call me.

Today's Thursday, right?

Ok. I didn't hear from the neurologist yesterday about blood test results. Therefore, I've already called and left a message for them to call me. (They have a totally automated phone system...only get a live person if it's an emergency). Here's hoping they call me back SOON.

The headache was really intense and more widespread yesterday afternoon and evening. I ended up using earplugs to block noise, which seemed to help keep the headache from worsening. Of course, it made conversation difficult! The pain's not as bad right now, but I've noticed the pain seems to increase steadily throughout the day now. 30mg of that med doesn't seem to make any difference whatsoever.

I'll let y'all know when I hear about the results.

21 January 2009

Yes, I'm still here

I mean, where else would I be? It's hard to go anywhere when Diablo's on my lap holding me down! Headache's the same old thing. Nothing exciting going on. Hopefully, I'll hear from the neurologist today or tomorrow with the blood test results. No word yet.

Last night I had the jitters and my heart was racing like I had drank one of those energy drinks. I have no idea why and it's not going on right now. Maybe that one (1!) Mountain Dew I drank over the course of 12 hours set me off??? I drank nothing but water otherwise.

MLS preseason training started yesterday. Yay! That means the season is just around the corner. Of course, if this headache thing isn't resolved, I don't know how many games I'll go to since the noise level is quite high. Here's hoping that we figure something out. Soon.

Nothing else going on here.

20 January 2009

Inauguration Day!

Sorry I didn't post anything earlier, but I was watching the inauguration. It's one of those days that makes me even prouder to be an American...being reminded of the peaceful transfer of power. All I can say is, "God be with you, President Obama!"

I went to the lab yesterday and had the blood drawn per the neurologist's orders. The lab claims the doctor will have the result sometime on Wednesday. Meanwhile, I've upped the Nortryptiline to 30mg/day as of last night. We'll see if THAT makes any difference. I'm not holding my breath, though. Not since I woke up with a strong, localized headache pain today, even after plenty of sleep.

I am just so tired of this headache and the inability to concentrate as I did before. I'm getting completely frustrated and irritated/irritable!

Ok, President Obama has signed his Cabinet nominations, so I'm going to go find some food now.

19 January 2009

It's so nice to be home!

No matter where you go or what you do, it's always so good to get back home. I've discovered that the more or less "controlled" environment at home is what's keeping me sane. After being out amongst people in public and then at someone else's home, I discovered that the headache hurt much more all the time. I'm assuming it's mainly due to elevated noise levels, but I also think just more physical activity made the headache worse. Walking around the exhibits at the NSCAA convention caused my headache to steadily get worse. It wasn't exceptionally loud in there, so I think some of the pain increase was simply due to not being still.

Ok, doctor update....in the mail when we got home, there was an envelope from the neurologist's office. Inside was a prescription form indicating some blood tests to be done. No letter, note or anything else. I guess I just need to go get the blood drawn at one of the labs around here. For those who are interested, the tests ordered are: Anticardiolipin antibody ANCA, RPR and ESR. I think they're the same tests I had done last month. They're all tests to either rule out specific autoimmune diseases or to confirm them. I'll get that taken care of later today. Meanwhile, the 20mg dose of the new med had no effect this past week. Tonight the dosage goes up to 30mg. Yay.

I have another story to tell about this past weekend, but it's going to have to wait. Headache is getting worse already.

18 January 2009


Just a quick note to let everyone know we made it home safely. I'll write an update later today or tomorrow with more info.

17 January 2009

Hello from Wood River

Well, I didn't feel well enough to go out to breakfast this morning. I didn't get much sleep (headache/different bed combo) so I couldn't get up early enough this morning. I'll have some toast in a few minutes.

The headache didn't lessen overnight like it often does, so I'm starting the day with the headache firmly in place. No real plans for anything except going out for dinner tonight (I think). Just hanging out with family.

If anything exciting happens, I'll be sure to let you know.

16 January 2009

Friday?? Right??

I just have a hard time keeping track of which day it is...a bad side effect of not working.

Anyway, I've survived the MLS Superdraft. Barely. We got to St. Louis yesterday and went to the convention center shortly before the doors opened for the draft. Our team owners had insured that the KC Wizards fans would have seats in the first few rows, so that was great! Several other small groups of KCW fans had also shown up, so we had people to talk with. I was doing fine noise-wise until the draft got under way. Then, in addition to video segments which would come on at high volume, the supporters group from St. Louis (they don't have a team, but they're trying to get one in MLS) would begin their chanting/singing. Loudly, as any decent supporters' group should! Then, they had a drum. Normally, I love the fact that supporters' clubs use drums and anything else to make noise. This time, not such a good thing for me. I managed to stay in the room for the duration of the first round, but my head felt like it was going to explode by then. I spent the 2nd, 3rd and 4th rounds of the draft in a chair in the space outside the ballroom. A bit noisy, but definitely much more bearable for me.

We went to the hotel and then out to eat (it was REALLY cold walking around downtown St. Louis!). My head still hurt, but it was down to a level where I could function reasonably well.

After we got up this morning, we went back to the convention center to tour all the cool soccer-related stuff in the exhibition hall. There are a lot of really intriguing soccer things out there! We learned some things, saw some old friends and got some trinkets. For an exhibition hall, it wasn't terribly noisy, but after about an hour or so, I had to sit down. My head was beginning to hurt worse gradually and I was feeling a bit weak and woozy. So, I spent most of the rest of the time in the nice comfy chair I located while Bobby looked through the rest of the exhibits. He bought some soccer scarves and we were on our way out.

So, we're now at Bobby's parents' house. I have some pain, but it's lessened considerable since we arrived here. I was able to lay down and nap for about an hour, which helped. We then had a great fried chicken dinner (thanks, Jean!) and then I decided to log on and update this (Jean told me to, too).

I had about as much fun as I could the last couple of days, but the severity of the pain when I was around noise and activity just really brought home how bad the headache is. At home in a more or less controlled environment, there isn't often a big swing in the level of pain. Boy, there sure is a big swing when I'm out in the real world!

Ok. Gotta go now. Dishwasher's going and I'm too close to it here. I'll probably write more tomorrow.

Love to everyone!

15 January 2009

St. Louis

Bobby & I are leaving Thursday morning to head to St. Louis. We'll be going to the NSCAA Convention, mainly to attend the MLS draft and, perhaps, the Women's League draft. We also plan on going through the exhibition area just to check out new soccer stuff. So, I may not be updating this blog regularly this weekend. We're doing soccer stuff Thursday & Friday (staying in a downtown hotel), then going over to Bobby's mom's house for the rest of the weekend.

I heard nothing from doctors' offices on Wednesday. At least my cell phone works in STL!

Later. Some time.

14 January 2009

Wondering Wednesday

I'm wondering if this headache is ever going away.

I'm wondering if we'll find out what's causing the headache.

I'm wondering if my doctor's battle with the insurance company will result in my getting a CTA test.

I'm wondering if his battle will also result in the head MRI payment being approved (the bill is over $5000).

I'm wondering what it's like to be able to concentrate for more than a few minutes at a time.

I'm wondering if I'll be able to "hang" at the MLS draft in St. Louis, or if I'll end up having to go to the hotel for some quiet time.

Just one of those days, ya know?

13 January 2009

Gotta love insurance companies, right?

Well, the neurologist's nurse called me this morning and said that my insurance company had denied the request for the CTA! She said the doctor would review my chart/blood tests and see what the next step should be. They'll get back to me.

So, Bobby had taken a 1/2 day off work today (it's slow at work), and we were headed to Target, which is across from my primary care doctor's office. I had Bobby go there and we went inside where I just asked if I could talk to the nurse for a minute. The nurse came out shortly and I informed her of what the neurologist had said (worried about diabetes later in my life) and that the insurance company had denied the authorization for the CTA test. She looked shocked. At that point, I asked if I could go back and use their scale (to find out about that possible mysterious 20 pound loss). She took me on back and while I used the scale (without the 20 pound loss, mind you!) the doctor saw me and came over to ask what was going on with me as he had not yet received a report from the neurologist. I explained what was going on and about the denied CTA test, as well as the fact that the insurance company had denied payment for the head MRI I had done last month. Both he and the nurse looked a bit angry and the doctor told me to get the insurance information to him and he'll call and find out what's going on.

After our outing to Target and a late lunch at Long John Silver's, we came home and I looked up the claim/authorization request numbers and other information and left a message for my primary doctor's nurse.

I still have not heard back from the neurologist about our plan going forward.

Meanwhile, my head still hurts. Fortunately, it hasn't been terrible today.