Sleep Studies

In a recent blog, I wrote about my experience going through this...Well, I just got a call...

"I'm sorry," said the technician (we'll call her Sandy) "but your sleep study did not meet protocol and therefore the doctor would like for you to come back and do it again." I was flabbergasted - did not meet protocol? What the f*&# does that mean?

"I'm sorry," I say. "Can you explain to me what it means by 'didn't meet protocol'?" She went on to explain that I never really hit REM and therefore there was no data so that they could not write up a report. "Oh - and you want me to come back? To do the test again?" (I'm thinking, what the hell? Wasn't it bad enough the first time I had to go through it? And they want me to come back again? I don't think so!!!)

As a result of not hitting REM (which means I did not sleep - at all!) there is no data. They cannot write a report. He'd really like to see me. Well, isn't that nice. I tell the Technician, Sandy, that there is no way in the 7 hells that I am going through that again, and that their report can note that the patient politely declined the invitation to repeat the procedure. The patient would also suggest that they use some type of sound proofing or move their laboratory to a building where they don't get screaming sirens and constant deluges of announcements for Code Blues and Code Reds. I also let the Technician know that since the doctor who requested the test is no longer part of my insurance plan, I would have to pay out of pocket, and well, I am not really wanting to do that.

I mean, really...I just said that I was tired. I had trouble sometimes getting to sleep...Well not anymore, as it is truly amazing what can happen when you start to exercise. Wears your butt right out.

So - am I going back? No way in the 7 hells am I doing that again. It wasn't fun, it sucked on all 7 levels.

Now - I'm going to go exercise which will settle my brain and make me tired, as if I needed any additional help.

Looney Tooney

Okay - this is my dog. She's an italian greyhound. Nothing unusual about her except that she's my buddy. She sits near me, sleeps with me and gets excited when I get home...she's awesome!

She loves my husband and has finally (!!) accepted our son as a higher up in the pack organization of our family...for such a small dog, she sure does have a big attitude...by the way, the pillows she's leaning on are small throw pillows - she's all legs.

The PIC line is a pain in the butt. Nurse Ratchet was here last week (he came on Friday - late!!) and changed the bandage. My arm was really sore so I also got a lecture and a warning that if it got worse in any way I would then need to go to the ER as I may have needed to have my PIC line taken out and then reinstalled - EEEUUUWWW.

Basically, after the bandage was changed and the warning received, we determined that my arm hurt so badly because I was using it too much. Granted, I helped paint the weekend I had it installed, and continued to use it on a regular basis - sooooo - not a good thing. This week has seen much less use of the arm.

This past weekend was all about relaxation. Saturday I did nothing - I sat on my butt, read my smutty novels and watched HGTV. Sunday I took my child to see Wall-E. Very cute movie. It has a really great theme for adults - I'll not share so as to spoil anything for my readers, but nevertheless, it was just a really cute movie.

Saturday night I did my sleep study. The Doc believed that I was suffering from sleep apnea. It was a horrible experience. First, you are completely wired up - I mean on your legs, chest, scalp, face and in your NOSE! This was the most disturbing to me because I mean, where were these wires before they were in my nose? GROSS! Also - as the sleep center is located at the hospital - Shady Grove in Gaithersburg/Rockville, Maryland - everyone knows that sleep just does not happen in a hospital. Not for the usual reasons of being disturbed by a room mate, or having nurses coming in and out to take vitals - no this would be the fact that every 15 minutes there was either a Code Blue or a Code Red. Now, the hospital must make an announcement (it was a different voice every time) on a slight delay - and then it is played over and over and over again on a repetitive basis for 5 to 10 minute intervals. How do I know this? Because after the 3rd Code Blue (people dying everywhere!!!) I started to time how long the announcement was played.

The other bad thing about being in a sleep study in a hospital is that people die in hospitals. I know that I mentioned somewhere that I was a medium - this basically means that I see and can speak with dead people. Well, when you are in a hospital, and the spirit knows that someone is around who can hear them - they are drawn to you. All in all, this did not make for a restful night. There were three people who died unexpectedly that night. One was an older gentleman, he was one of the code blues - he was in the ICU for pneumonia and went into cardiac arrest. They were unable to revive him. A second person was a woman. She died on the operating table - she was brought in by helicopter (she remembered all of this) from a car accident way out and she was brought back or revived. She has a long way to go in regard to recovery, but she'll be back eventually. The third was the hardest. A child died due to complications from cancer. He was 9. The same age as my son. He was so assured that it was his time and he was ready to go - he said "I'm just so tired - and I'm ready to go into the Light." That is exactly where he went - into the Creator's arms. So much suffering from one so young. That one was really hard to deal with.

So - after not getting hardly any sleep at all - the technician comes in to wake you up at 5 a.m. She removed all the wires (leaving all the blobs of cream and stuff on my scalp to find later - can we say euuuuwwwww?) and electrodes and let me go home. I drove home to a beautiful sunrise - let myself into the house and promptly put myself back to bed.

Enough about sleep studies...

I do have a pending problem...Well - this is about my lyme disease - now I have a new challenge. Finding a doctor that has treated and is aware that chronic lyme disease does, in fact, exist. How do I know this? I have it! My insurance company and my current doctor determined that they didn't want to work together any longer, so since I'm not paying $40 more per visit than I was paying via co-pay, I've got to find another doctor. I'll see him tomorrow, get copies of all my records and move on. I've already got an appointment with a good doctor next Thursday. This is such a pain in the butt.

This weekend is the 4th of July and we have loads of plans. First, I'm taking the day off tomorrow - it's the 3rd. I've got loads of errands to run, as well as my last doctor's appointment with Dr. Jaller. His blog is linked below - lymemd. Anyways, while I've enjoyed his curiosity as well as his experiences in treating lyme, I have to admit the last two weeks I've felt quite like a guinea pig. Not a good experience for one to have.

Back to the 4th. We live in the suburbs of the Washington, D.C. Metro area. I found some interesting areas to watch the fireworks go off - so we have plans to do that. Not to mention, it may rain (it is always threatening rain on the 4th) - so instead of going to the Mall and sitting on the marble steps on the Lincoln Memorial (we have done this before - but it was pre-child), we've got another place we're going to try. I'll write more on this later - I don't want to give up my good spot.

We're also planning on taking our child to the movies to see "Kung Fu Panda". There are quite a few movies out that I'd like to see - Wanted, Hancock, Iron Man and the Hulk are just a few. Looks like a good movie summer.

Well that's all for now.

Blessed Be,

Amy

Introduction

My name is "Blymey" but I'm also known by other names - mostly in regard to my religious practice which is Wiccan. I am also a member of the Washington and Baltimore Area Pagan Clergy network - I do spell work, counseling, handfasting (marriage), deaths, births and readings (tarot, palm, aural, mediumship). You can find me through that website as Morgana Terpsicore or as Morgana Dark Witch on Witchvox.com.



I have been a "medium" all my life (yes, I see dead people) - but that is not what this blog is about...It is about the challenges of misdiagnosis over 20 years and my doctor who diagnosed me with Lyme Disease in April of 2008.



I started dancing when I was 5 after seeing the Nutcracker with a friend and my family. I continued on learning, dancing and finally going semi-professional dancer starting at the age of 15. I quit school (OK - I flunked out), moved to Orlando and slowly made my way into the "Entertainment" division of Disney accomplishing my dream of being a professional dancer. This all ended in a fall when I was 21 where I shattered both knee caps, damaged both ACLs and had, as a result, quite a few arthroscopic surgeries on both knees. My doctors advised me to quit dancing and I followed their orders - moved back home to my parents (they had to pay off all of my credit cards!!), met my future and current hubby, moved in with him, went back to school - he graduated, we got married and moved to the Washington, DC area. Whew! We've been here since 1993...



So all the aches and pains, knees, ankles, feet, lower back, neck, etc. I had attributed to being a dancer and post-no dancing - gaining great quantities of weight. Most doctors said I would be much better once I lost the weight. Yet, things kept happening...diagnosed with PMDD (pre-menstrual issues - you've seen the commercials), then Chronic Fatigue Syndrome, then Poly-Cystic Ovarian Disease/Syndrome, hormonal issues, thyroid problems, constant bladder and kidney infections - it was literally one thing after another until this past April when I met a Dr. in my current home-town and he requested that I get a physical...

Now the first thing I noticed about Dr. J is that when I had my physical he actually asked me to get undressed and wear one of those lovely paper robe things. I hate those, don't you? So undignified - especially when you're fat - as I am slowly working towards not being...Next, he actually touched me in a doctor patient way (You guys are SICK!). Now, of course he's testing me for neural issues and other problems and I'm thinking - "My Gawd - I didn't shave my legs and BOY are they hairy!"...I asked him to forgive me for not taking care of that and he said he didn't care...But as for the physical itself, I haven't been physically examined by anyone since I left my pediatrician at the age of 22 when he retired! And I'll tell you that I am now 39 although when my physical occurred, I was still 38 with a week to go until I turned my current age.



So, this physical goes on, he's asking questions (lots of questions) and I'm mentioning every ache and pain that I've ever had, all of the diseases as a child, the balance problems that I put off as clumsyness, the short-term memory issues that I was recently experiencing as just having "other things on my mind", etc. and I realize how I'm rambling on and on and say, "Well, now you're surely going to think I am a hypochondriac, just as my last doctor did." He looked directly at me - blinked and said "I don't think you're a hypochondriac - I actually think that there is a physical reason for all of these problems and I want to run a few tests." Well the tests ended up being 15 (!!!) vials of blood that supported the symptomology of lyme disease or the bacterial infection from Borreliosis Bergdorferi.



Well - he then requested that I get tested by a lab called IGenIX that specializes in testing for this bacteria - it came back as positive for Lyme and referenced the fact that it was widespread and that I'd had it for a very long time.



So, after two months of antibiotics, tomorrow I get installed in my body a PIC line (or a catheter) to make available an intravenous (IV) antibiotic. I am VERY nervous and broke down in tears when I was speaking to my hubby on my cell phone after the doctor told me that even in the month since he had seen me last he could tell that my neuropathy was getting worse as well as my cognitive function...How scary is that???



So - to explain cognitive function and what Lyme can do to you - you know your short term memory? Well, mine is not all there. For example, last week we traveled to Texas to visit my parents - we flew into Houston Hobby and rented a car. By Monday I could not recall driving from the airport rental office to my parents home in another destination. How scary is that? Pretty damn scary! There are conversations I don't recall having, questions I'll ask over and over driving people nutso (you know when you're child is 2 and asks "Why?" about everything? Try being an adult and getting that response and you have no idea you've already asked that question about 5 times prior, gotten answers, and it was about 45 minutes ago...)



So the doctor did some reflex checks and other stuff and spoke with me about my symptomology and determined that since we now have a full and complete AFFIRMATIVE for Lyme Disease we're going to treat aggressively...Cognitive issues first. That's fine, but it still scares the crap out of me...I don't like needles, and I'm trying to lose weight and well - other than having a catheter in my arm or wherever this is going - is really going to be a major pain in the ass!



So - I'll let you know what happens tomorrow...Friday, June 20th - the first day of Summer also known as the Summer Solstice.



Until then...