So, a fasting blood draw every three months. Not a big deal, but I still have this needle phobia (you think it would get better over time, especially if i am actually injecting myself every night). Maybe it's this whole idea of having something shoved in a vein... I don't know...
But today was really odd...
I'm sitting there, the nurse has me all prepped to do "the stick". I always look away, because... well.. it's easier to cope, I suppose.
Next thing I know, she's changing sample tubes.. she had stuck me and I NEVER felt it AT ALL. I commented on it, congratulated her and I was just generally surprised, perhaps shocked. Don't get me wrong - I still hate blood draws, but this was a pleasant experience... today.
]]>it's not like I haven't talked about it though... I did a podcast episode last year that talked about it. I have just never written about it.
So... here it is. One year later, I can look back and try to remember what that day was like. You never want to get a phone call at work from a health care professional. I had been getting all kinds of MRI's, spinal taps... just to figure out why I'm getting these leg twitches/spasms...
So, the doctor that I had gone to for a second opinion made a diagnosis based on interviews, symptoms, and something that showed-up on an MRI that I had of a totally different region...
I was diagnosed with Multiple Sclerosis.
I happened to be seeing my neurologist that day, so I called Carol and we both went... and we both listened to what she said...
I started a daily drug therapy... I had to get over an extreme phobia about needles. The drug is administered daily - via injection - into a fat layer under your skin. I guess the only way I could handle this was I was able to get an Autoject - a device that uses the pre-filled syringes and fires/injects at the pull of a trigger... that way i don't have to handle it all .. and deal with manually injecting myself...
So... the drug itself - Copaxone - is not a cure. There is no cure. It's just supposed to reduce the number and severity of exacerbations. It works by modifying my immune system... which you know, you gotta watch. And *NOT* cheap. Thank god for insurance - it's saving me over $2,250 a month. But, it's a drug that, since it doesn't cure, doesn't make you feel any different either. So what weighs on you mind is - "is this drug even working?"
So... there you have it. A disease without a cure. A drug that just reduces the lesions and their frequency...
Just to keep me going...
Here it is a year later, and I don't really know how I feel about this... don't know at all... I know it was "caught early" before things really went "south"...
So... you only do what you know you can do... don't let the disease "define you"... just keep on living each day... and see where the road takes you
]]>Today though... that was not the case.
She called to say that the MRI I had done the day after Christmas, when compared to another I had done showed no changes... and that's good. However, when comparing the two images, it looks like there is a possibility that the original radiologist may have been able to diagnose my issue earlier (almost 2 years ago, a year before the diagnosis).
Umm... oh oh... you know... I never blogged about this... I talked about it in my podcast, but I've never wrote about it...
I'll do that next week..
It doesn't matter that I drink the diet version because the lack of carbs is good for my Type 2 Diabetes...
... but then there's this report of a study...
Apparently, if I drink one or more soft drinks a day (which I certainly do) I would have a more than 50 percent higher risk of developing the heart disease precursor metabolic syndrome than people who drink less than one soda a day - diet soda or not, it doesn't matter.
The study, in the American Heart Association journal Circulation, looked at more than 6,000 healthy people, who showed no signs of metabolic syndrome, and then followed up. After four years, 53 percent of people who drank an average of one or more soft drinks per day developed metabolic syndrome. Those who drank one or more diet soft drinks a day were at a 44 percent higher risk.
So... nobody knows the "why" behind this. Not the carbs, not the calories... so... what is it?
]]>Is it too early to want the year to be over?
]]>Why? Because I can't believe I had this done...
A girl in the office came up to me this afternoon (after I was walking around trying to figure out what a loud noise was that we had heard... it was thunder!). We went into a larger, empty management-size cubicle and she asked me if I was having back problems. I explained my situation.. that for years my legs have been spasming... I had no pain, but the spasms can get severe... and it's not fun trying to drive if your right leg twitches, causing your foot to tromp on the accelerator...
She then told me that she is a practicing healer.. and that she can help me with a "treatment" as a Christmas Present...
We spent the good part of the next half hour to a nhour with her rubbing her hands together in a circular motion, as if to gather heat and energy.. she would direct her hands at me, occasionally stationary, occasionally sweeping over me as I stood in the cube. She never physically touched me. Yet, I did have sensations of cold, heat, and occasionally a movement somewhere inside of me.
OK, look... she's a very attractive girl, probably the best looking woman in the office. Who wouldn't want to spend private time with her in a cube? But.. this was different... she proceeded to tell me about what she does... and the people that she has helped over the years. How she is trained in 6 of the 9 healing techniques that are used at Children's Memorial Hospital. How the power of prayer works, even long distance over the phone.
I sat down for the last half of the session, and she continued to work on me... standing in front of me, behind me... to the side... she touched me once, to put her hands on my left shoulder to apply downward pressure.
I sat in that chair, one that should have triggered my twitching. It didn't happen. I went back to my cube. My legs were still the rest of the day. As I write this, I haven't even felt the slightest sensation in my legs.
WHAT THE HELL DID SHE DO??? HOW DID SHE DO IT??? WHY AREN'T MY LEGS TWITCHING?
Look.. I'm a geek... I believe in science... what the hell happened? What's going on?
UPDATE: 31 hours. It took 31 hours before I felt the slightest bit of a twitch, and then it was muted, subtle, no where near what I've experienced for years. I have NEVER had a 24 hour period in years without twitching... what is this???
UPDATE: One week later, the twitching has returned, no where near as severe as it has been, no where near as frequent.
She did something to me... what she did, how she affected me, I have no idea. All I know is that she did something and for me there was a change.
]]>Today - no headache...
...but...
I really feel like I had a side effect. I was loopy - my short-term memory was shot. I couldn't remember things that I neded to do, that I thought about just minutes earlier. Let me give you the final example of the day...
I went to Walgreens to pick up a prescription and I bought 5 containers of Dibbs ice cream nuggets (mmm.. mint... love these things...) I came home, put the Walgreens bag on the counter. The first thing I do when I get home, is bunny-proof the family room and let the "kids" (bunnies) out o fthe cage so they can romp and exercise. I prepped the room, turned on the TV... and went upstairs to sit down at the computer and login to Second Life...
About an hour to hour and a hlaf passes when Carol finally came home, and I can hear her yelling at me downstairs. I cam edown to find 1) the "kids" ar still in the cage - I had prepped the room, but never opened their door to let them out, and more importantly 2) I never put the ice cream away in the freezer - it was still in the bag on the counter.
That's what my whole day was like.
]]>I was downtown at Northwestern's Intervention Radiology department. Radiology? Yep. I had two procedures done - a spinal fluid draw (for testing the fluid) and a myelogram.
It all starts with a lumbar puncture - inserting a needle into the spinal canal. Yep. Needle. Into the spine. So, do do it accurately and hopefully pain-free, not to mention avoiding having to re-stick you, the insertion is done under the guidance of using a fluoroscope. I was face down on a table, with a doctor, nurse, and tech (an all female crew!) working on me. The worse thing was the local anesthetic. THAT hurt. After that, though, I didn't feel a single thing. So, they drew a sample of cerebrospinal fluid. That takes some time, since, it's not really drawn, but the container fills by itself i gathered. When the fluid flow slowed down, the table I was on tilts, so I was tilted onto my feet to get the fluid to flow better! When that was done, they injected a contrast dye into the spinal canal. The sensation was of cold filling your spine - a VERY weird feeling. Obviously, the sensation was confined to the spine, unlike contrast dyes that are used for MRI/CT scans, where they are injected intravenously the sensation being heat and it radiates through your body as it follows the arterial blood system.
The doctor was quiet, professional, and quick. When she was done, the nurse and tech took over to produce about a dozen reference xrays of my spine using the fluoroscope system, which required a bunch or table tilts and contortionist positions for me to flip into. The only almost-accidents that almost happened were due to... umm... the oversized parts of my body - my shoulders (I have really broad shoulders, even for somebody not as short as I am, so when I lay on my side, I'm a bit "taller" than regular-sized people) and my nose (yes, it's a bit oversized) and they tech didn't look when she swung the emitter around.
Then I had to roll onto my hospital bed and they wheeled me back to Intervention Radiology. Not the only time I had to roll. When back in my curtained space, somebody came to draw some blood. That's when I realized that I was in for some bad time. I was starting my stay in a hospital bed - flat on my back (well, I don't have to be on my back, but have to be flat - head even with feet. For THREE HOURS. Then.. it started. My legs started to twitch. it started pretty suddenly, and the twitches were severe
I was wheeled in for a CT scan (hence the spinal contrast dye) and I had to roll off my bed onto the scanner table. Found out something i didn't know about the GE Lightspeed CT Scanner - the scanner can tilt! Very scary to see this massive thing tilt. the tech put a cushion under my legs and taped them down to try to dampen the twitches. It was TERRIBLE. But, somehow, she was able to get shots that weren't blurred.
When I was done, I was told I could crawl back onto the hospital bed. Wait.. I could crawl? Why did I have to roll before? It turns out that they have you roll - to mix the dye in the spinal column!!! I was taken back to another curtained area and that's where i stayed until I was released. Carol was able to be with me when I was back in the curtained areas, which I was thankful for, because i was a mess. The twitching was worse, and I was so uncomfortable having to have my head flat against the bed. I was able to get a nurse to get me a folded-up blanket to put under my head. That half-inc to inch of material was just enough to change the way my head felt, and still kept it flat.
We had arrived at the hospital at 10am for a 10:30 appointment. The lumbar puncture was over by noon, the CT scan done by 1pm. I am flat on my back... and realize it's been 19 hours since I had something to eat. And I can't eat on my back. The next two hours were hell, and passed slowly.
When I was sprung at 3pm, we went directly to the cafeteria.. and I chowed-down (Carol had eaten when I was having the procedure done)
Then, I drove us home. 4pm. Rush hour. Downtown Chicago to the NW suburbs) my twitching was terrible.. I had started to feel bad, all because of me not eating. I pulled-over at the Des Plaines Oasis and we changed duties, with Carol driving the rest of the way home. When we got there, I went to bed for about an hour. I felt bad. It wasn't until about 9pm that I started to felt slightly better.
]]>What a gorgeous day, for November.. 68 degrees.. the drive downtown wasn't so bad, though not totally free and clear. It's maneuvering downtown that's a bitch. I had t go to the 675 N. St. Clair which is just east of Michigan Avanue... tight streets, lots of traffic, lots of peds. Thank Dog I had left early to compensate for the possibility of travel issues.
My buddy Barry knows Northwestern Hospital pretty well, but this is my first time. It's a sprawling campus in the middle of town. I had to go to the 20th floor of one of the pavilions and I was SOOOoooo impressed with the facility.. the people... The doctor is a spinal surgeon, so this is right up his alley...
So... again, another doctor that doesn't understand what's going on (MRI's do not show what the symptoms would indicate), but I'm at the right place... a teaching/research hospital. We've got another test on the books that would help the diagnosis... so I'll need to coordinate it with my neurologist and the new "Team"/doctor.
Thank God I had stopped at the oasis on the way into the city to buy snacks and drinks for the drive home... I left at the beginning of Rush Hour and it took me about 90 minutes to get home. So i listed to some Podcasts on my iPod on the drive.. and the time passed pretty easily.
]]>I rolled out of bed, placed my feet on the floor, and then...
...WHAM!...
I never had my balance when I rolled out of bed. I was never dizzy, no sense of vertigo. My legs seemed to support me, but I must have planted my feet waaaayyyy off balance...
..and collapsed into my nightstand, tipping it, sending things to the floor, including myself, and along the way scaring the hell out of Carol who was silently asleep (at least, I think she was silent).
I was awake, but I just remember realizing my body isn't in the position that I think it is just before I crashed. So, I wasn't dizzy, but maybe this is vertigo?
I've been unsteady on my feet for the last few years, and, come to think of it, I've had this sensation MANY times before,where I'm not where I think I am. When that happens, I'm not dizzy, it's almost like a type of disconnect when I finally realize "Hey! I'm not supposed to be here!" and then try to compensate.
Even though I am frequently off-kilter, I have never lost my balance and fallen.. up until this morning. But, take it with a grain of salt.. .I had been sleeping, and was barely awake when I rolled out of bed. (It's not like I rolled out of bed onto the floor either... I had swung my legs underneath me... I just never got vertical.
I think I'll partially blame that new 4-inch Memory Foam Mattress Topper... making the bed too tall to easily get in and out of for us Height Challenged individuals.
Gotta blame someone.. or something...
But... she decided to have a different look, and sent me for a Stand-Up MRI at a facility in Deerfield.
Well, it wasn't stand-up - it's actually recumbent.
That's not good - Problem #1: sitting aggravates the leg twitches.
The machine was huge, HUGE! it sits on a 3-foot thick concrete slab under the building. The magnets are to each side of the device, so you walk into it and sit down.
Problem #2? My shoulders are wider than the sitting area, so I have to roll them forward to fit.
I was so uncomfortable. This was so much worse than the others I had... It's hard to attempt to sit still when you don't have control of your body.
Problem #3? Because I twitched so much, some of the scans had to be re-done, and the two hour estimate suddenly became three.
Problem #4? Because of the several twitches, there *is* movement in the scans. Not good.
Any positive things? Well, the machine was significantly quieter than the other GE lay-down types. On the far wall that you face while sitting in the machine is a large plasma TV. You have the option of watching movies while being scanned! But, instead, the tech was watching The Simpsons on the local Fox affiliate, so that's what I watched (Simpsons, Malcom in the Middle, Simpsons, Seinfeld...House)
It is extremely weird sitting in an MRI and watching House on TV. VERY weird.
Problem #5 - I have an extremely sore shoulder/upper right arm. I can barely move my arm... something about being wedged in this thing for three hours... wasn't great.
Hope the scans are good and show something.
]]>I spent the night at a hospital's Sleep Disorder Clinic, sleeping (or trying to) while somebody watched my on TV, monitored my breathing, my snoring, my eye movements, my jaw movements, my brainwaves.
So I have sleep apnea. My guess - pretty bad. Solution? Wear a mask to sleep every night for the rest of my life. And in my case, a full face mask (nose and mouth), not just a nose one like everybody else could use. My nose just doesn't work the same. Hasn't for years. It's perpetually blocked, stuffed. I haven't breathed through my nose in years. The normal nose-only CPAP doesn't work for me.
CRAP.
CPAP.
]]>Carol shortened a band new pair of pants for me to wear today. (yeah, my legs ar just REALLY friggin' short...)
Big deal? Well, yes, when the waist is 6 inches less than my biggest pair that I used to wear...
]]>So.. it's the same thing.. "I don't know"... because like all my problems and all my doctors, it's all the same.. "I don't know".. and whatever I have, it doesn't "fit" with test/scan results.
But, now with her, it's like.. OK, let's go down this path and start eliminating. I have another series of blood tests to take.. eliminating Vitamin deficiency, Lyme Disease.. stuff like that..
Oh, and she wants me to go in for a sleep study... my fatigue, coordination issues... it all fits sleep apnia... along with - believe it or not - high blood pressure, high cholesterol, etc.
I feel comfortable with her.. great attitude... I think maybe, SOMEDAY, we'll figure this out.
]]>