Friday, March 29, 2013

SCT Day 59 - a corner turned?

A quick update as I have lots to get done today.  Took the Halcion last night rather than the Ambien.  The Ambien kept me in bed but I didn't feel like I slept yesterday.  I also got a call from my insurance nurse (yes, my insurance nurse) telling me that a side effect of Acyclovir is insomnia.  So I took the acyclovir at 6p rather than before bed.  Remember, I felt like I got no sleep the night prior and I only had 2.5-3 hours sleep the night before that.  I also got a Hong Kong massage (strong elbows and stretching) yesterday.

But I'm going to list the primary reason for success as the acupuncture sessions.

Last night I closed the light sometime after 1130 and got up to use the potty around 330.  I then got out of bed at 0630.  That's a normal night that I could live with!  I won't have acupuncture for two weeks as we're at my folks house for a week.  I'm not sure what I'll take tonight as we have an early flight in the morning.  But I feel like we have turned a corner (or at least see the bend.  Hats off to AmyG for setting the two month time frame!

Thursday, March 28, 2013

Acupuncture Update

Yesterday was my fourth session of acupuncture, specifically intended to address the peripheral neuropathy and my sleep issues.  To remind everyone, my acupuncturist is also my doctor (generalist) so this is a very medical view of things and not just a holistic view.

This week she approached things a bit different than last.  If you remember, last week the pain in my feet, when she put in the needles, was much greater than before.  So this week she still had needles in my feet but not in the webbing between the toes like last time.  If I can remember, per foot, it was either side of ankle, two on top of foot, one top of ankle, one in wrist (inside) and another in the forearm (inside), three in the belly, in a line, below the belly button and lastly, one on the top of the head.  That did hurt going in but I was told to pretend all the bad energy was going out that point.

When she put the third, the lowest needle, in my belly, I felt it in my inside ankle, left foot.  The electrodes were placed between ankle and belly and the "tapping" feeling was felt in the belly this time, not the foot.  During my 20 minutes the tapping ranged drastically from severe (seeming to make my stomach actually shake) to non existent - completely gone.  The needle in the left forearm was directly on the nerve as any movement of my fingers would send a sharp twinge up the nerve.  The needle in my head didnt have much pain after it was placed.

When finished, my right leg went numb (last week it was the left leg that went numb) and I could definitely feel a difference in my feet.  Again, not necessarily better but a difference, and it felt like it was going in the right direction.  Today things feel different.  I want to say a little better but can't really say that for sure yet.  I need to get back home now that I've picked up my scrip!

More later!

SCT Day 58 - Ambien 2 Sleep 6

Last Thursday I got a scrip from Mt Sinai for Halcion.  As it's a controlled substance you need to have the physical scrip but the pharmacy was able to get me a 5 day supply.  Two nights ago I decided to try and sleep drug free, resulting in about two and a half hours of sleep total.  I felt pretty good for not sleeping so well!  I have pictures of my head as a canvas which I will post later (Eileen already put some up on facebook).  But I digress....

When I came back yesterday I checked the mail for my Halcion scrip - Duane Reade told me that they were giving me an emergency supply and the doctor's office was mailing me the scrip.  Since I hadn't seen the scrip in the mail, I checked at DR.  At first they said they got the scrip yesterday but there was a problem.  Apparently the RX insurance provider places a limit on the number of units you can get of a controlled substance.  If the docs scrip is beyond that amount then the doc needs to call and confirm.  I called Mt Sinai and spoke to the admin staff there who will send a message to the NP to address the issue.  So I went home and waited.  But not long!  The pharmacy called me back to say they confirmed they received a "fax" of the scrip but not the actual scrip.  Without the actual scrip I wasn't getting anything!

I made another call and finally got the admin that has a clue.  The NPs apparently both remember me telling them I would come up to Mt Sinai to pick up the scrip.  The only problem with that story is that nobody ever spoke to me!  They spoke to DR but they never spoke to me.  So this morning I had to schlep up to Mt Sinai to pick up my scrip.  And it still took me 30 min of waiting!

So last night, after the prior evening of only 3 hours max of sleep, I decided to take two Ambien and see what happened.  I went to bed around 11 and woke up (to the best of my memory) at 0530.  That's the first time.  However, I don't feel rested.  When I woke up I felt like I had been hit by a small truck.  Just sore in the arms and shoulder areas.  I don't remember dreaming at all.  With the Halcion I was dreaming.  I also didnt take my B complex vitamin today in place of a B12 specific to help with the neuropathy.  I did have acupuncture yesterday and will address that in a separate blog entry.

So at the end of the day, 2 Ambien knocked me out for 6 hours but I'm not sure if it did what was necessary.  

Wednesday, March 27, 2013

SCT Day 57 - well....

No Halcion last night - went to bed around 11-ish.  Woke up at 0214 - been up since - so that little idea didn't really work too well!  :)

I can't say the Halcion is the reason I've been sleeping as I really haven't been sleeping.  But I've not woken up and then couldn't get back to sleep.  That is a first.

For now - it's time to get the kids breakfast ready.  I'm also meeting up with my artist friend Eileen today and she's going to test color my head.  As part of my idea to 1) have fund with being bald and 2) potentially get others to do the same for a calendar, Eileen's going to test my head as a canvas and see how easy/tough it might be.  More on that later.

Tuesday, March 26, 2013

SCT Day 56 - Halcion - Halci-off

I'm not sure what, if any, benefit I'm getting from the Halcion.  Tonight I am going to go without the Halcion and see how I feel in the morning.  I don't feel bad or drugged this morning but I also don't necessarily feel rested.  I ended up taking a nap as well.  I can't think of anything more to add than I think I'm going to take coffee back up!  This lack of caffeine stinks!

Monday, March 25, 2013

SCT Day 55 - Radio Silent

Apologies for being radio silent.  I think the lack of sleep is catching up with me and it was a typical weekend with kids, sports, etc.  And a new drug!  Haclion (Triazolam) which is another sleeping pill similar to Ambien (Zolpidem) but the pharmacist said it was actually more along the lines of Ativan (Lorazepam).  Read the Wikipeida reference - it doesn't sound like a fun drug!  One fbook friend referred to it as an oldie but goodie.  When the NPs finally called me back (the Epic MyChart system and how bad it functions is fodder for another blog entry) I told them my thought process.

Since I believe the neuropathy is keeping me from sleeping through the night and that's related to the pain in my feet and legs, it was my thought that a pain killer might help dampen the pain and give me a few hours straight of sleep.  But my parents' doctor had recommended something called Halcion, so I brought that idea up as well.  Of course it wasn't the NP that actually called me but another nurse down in the pecking order!  She can't do anything so she needs to confirm with the NP directly.  Two hours later she says we're getting you the Halcion.  As this is ANOTHER controlled substance they either have to mail (snail) me the scrip or I have to come pick it up - however, I didn't realize that.

I decided to make the move - from CVS to Duane Reade (Walgreen's) that is next door to my building. "Just fax it over..." - famous last words!  To be sure, I called Duane Reade to make sure they were aware of my scrip coming.  Of course they needed basic info but they also needed my prescription drug card identification.  I carry my BCBS card everywhere - that's my insurance card - but it's NOT my prescription drug card.  I call BCBS who tells me they can refer me over to Caremark who handles my prescription drugs.  Then I have to tell CVS/Caremark that I'm switching to Duane Reade!  Then I pass along all the identifying details to the pharmacists via the Duane Reade voicemail system.

I head over to just confirm they got the scrip and everything is fine, etc.  That's when I learned about the controlled substance issue.  They were able to get me a 5 day emergency dosage based upon the doctor's verbal confirmation and I should be receiving a physical scrip in the mail for an extended dosage.  That leaves me with the very quick Facebook poll I placed on Friday - should i:
  • use "binaural beats" audio therapy to lull myself to sleep - the act of using two varying frequencies to 'entrain' your brain to a certain frequency that is akin to sleeping or;
  • take the drug
My completely unscientific poll proved one thing - I don't have the reach I used  to! :)  Three people said go binaural, two said go drug and one said if one doesn't work, try the other.   Thursday night I tried the binaural beats.  My wireless headphones died while doing it so i woke up hearing waves but not through my headphones.  When I switched to the wired headphones I found out how much the cats love playing with headphones and how much they can hurt your ears when you leave them in and roll over onto your side.  Bottom line, it didn't work and I was a miserable wreck on Friday.

Friday night I tried the Halcion for the first time.  I think I was able to sleep for about four hours (midnight to 4a) or at least I don't remember getting up.  I don't feel like I was rested and the rest of the night was no different than before.  On Saturday I tried it again but I was taking care of the kids so when the youngest came into say hi to Mommy (who was still out with friends) I was 20-30 minutes into it.  Twice I had to get up and bring her back to bed.  After the second time Mommy came home.  Halcion is a short acting drug that puts you down but doesn't leave you with the big cloud in the morning.  However, I think waking you in the middle of when it's working isn't a good thing either.  At the end of the night, I was a wreck on Sunday - not a happy camper.  The grouch that awoke on Sunday could be due to lack of sleep or could be due to the Halcion though I don't remember seeing that specifically in the reactions.

I took it again last night and I feel like I may have got some rest but I was definitely up a similar number of times.  I'm not seeing any other side effects but I may try and go to another massage sooner rather than later as my neck and lower back are both aching (too tense when I sleep I guess.)  Another friend is taking the bikram yoga (hot yoga) that is near his office.  I may try that to see if I can get back into a stretching and workout mode.  

So I'm sticking with the Halcion for now - will have acupuncture on Wednesday - may get another massage and then we're off to my folks house in SC for a week where I hope the weather will be over 60 deg as I really am, for the first time in my life, OVER winter!  

Will talk more soon!  And apologies for those that have emailed but I haven't gotten back to yet!

bill

Wednesday, March 20, 2013

SCT Day 50 - OUCH!

Like I said last time, I felt like the acupuncture was having an effect.  It seemed to focus the pain, almost as if it was cornering the pain, like a rat, getting ready to force it out of my body.  I told the doc this today prior to my session and she was glad that it sounded like something was occurring.  Well today, something was DEFINITELY occurring.

I have a relatively high tolerance for pain.  Years ago, while still in Hongkers, my wife and I were back in the states and we got tattoos with my brother and his wife.  It was a surprise for mum and dad later on!  Well I was the first to get that tattoo: family crest on the left ankle.  When finished, I headed home to get changed into something more casual.  They all asked, "did it hurt" and I responded, "only a little, more a bit ticklish when they had to fill in the colored parts".  When I returned my SIL was ready to kill me (for her red Canadian flag place around the hip) because it HURT LIKE HELL!

So when I have acupuncture there's a needle, hell, there's a whole lotta needles!  But it's just a bit of a prick and the needle is in.  Two sessions ago the webbing between my left big toe and first toe hurt a bit when the needle went in but everything else was fine.

Today was a whole different story.

Anything that went into my feet hurt and it hurt like hell!  Twice I jerked my foot when she put the needle in - I have never done that.  I believe I had about 6 needles per foot (not including ankle area which had another 2).  Every one hurt going in.

And then she hooked up the batteries.

The first four circuits were fine, these circuits feel like a slow tap on the area in question, two circuits on each side.  Then there's the two circuits between the toes and the top of the foot, which usually provides a buzzing sensation to the area.  Not today.  When it came to the left foot it was by the toes and was a hot burning sensation between and under the toes.  On the right side when she slow turned up the amperage it was like having a live electrode strung between the toes and the top of the foot.  I told her this and then quickly asked that she turn it off - it hurt that much!   Part of it was most likely fear but the pain was much greater than I've ever felt.  We finally got the power on and I felt it top of foot rather than by the toes and the sensation was more heat or electrical than a simple vibration.

I asked if this is 'normal' and was told there really is no normal.  But it definitely looks like something is happening and the acupuncture is taking effect.  My feet are still singing!

more later.

Monday, March 18, 2013

SCT Day 48 - not too much change

I'll be a little more analytical in this post.  I've been trying to monitor and notice changes that are occurring and whether or not they are caused by the acupuncture.  I've also been trying to sleep - again, for clarity, I can get to sleep, I just can't sleep for longer than two hours at a stretch.  I won't get back out of bed but I will roll over, look at the time, move, and then fall back asleep.  Not since January, when I entered the hospital, have I been able to sleep longer than two hours.

The weekend was busy, as usual.  We had an early morning, just above freezing, baseball practice and I tried to help coach but wasn't doing to well running (well more like jogging, sort of, I guess really speed walking) those missed fly balls.  But even with gloves on my fingers were just too cold.  Then one of the mothers started talking about her husband home with a fever and I realized I should probably be a bit careful!  While my son was away most of the day at the Atl10 basketball championships, the wife, daughter and I went to see the school play: The Sound of Music.  So well done but this lack of sleep is making me a wimp.  I almost cried multiple times throughout the night as I kept thinking what it would be like if my son or daughter were up there on stage (it was definitely SOM, don't think "King and I" would have caught me like that!)  So in addition to being Monopoly's Water Works, my feet and calves were also singing by the end of the night.  But I had a plan.  I bought Benadryl and was going to try that as a solution to knocking myself out.

It didn't make any positive difference.  As a matter of fact, the only difference it made was it gave me diarrhea.  That made for a fun Sunday start!

So back to the neuropathy, I feel like the acupuncture has put focus on the pain and has caused it to be a bit worse in some respects.  This, I believe, is a good thing, but tough to describe.  It's almost like the body is identifying the points of pain, and making them burn themselves out.  Last night I was up around 6 times from 10 till midnight.  Throughout the rest of the evening I found that if I was on my back I would sleep for about two hours.  On either side it was 45 min to an hour of sleep at most.  Perhaps this has something to do with my sleeping ability as well.  I'll bring this up w/ the acupuncture doc on Wednesday.

On the sleep front, I'm just going to have to power through it.  I'd like to do some exercise or stretching but just can't focus and can't get up in the morning to do it.  Today my goal is to work on the blood work spreadsheet as I have numerous people asking for this now!  If I can stay focused and get that done then I may head to work one day and try and get some stuff done there.  It's coming on end of quarter and I need to get work done!

That's it for now!

Friday, March 15, 2013

SCT Day 45 - halfway to 90!

It's Friday again - I feel like a sloth with no motivation and getting nothing done.  I know I'm supposed to be resting and getting better but I would also like to feel like I'm "together" mentally.  And suffice it to say I'm not "together"!

I still have the cold and yesterday was my third day on Mucinex D.  Unfortunately I didn't take it till around Noon and it really does last 12 hours!  I didn't get to sleep till after Midnight.   I then awoke at 0130, 0230 and two or three times after that.  Still congested and cloudy in the head.  Over the night it seems to have settled more into my chest but I think it's just mucus settling and not the cold moving into the chest.  I'm going to be a bit more consistent with the Olbas Oil and Cocoa Butter to help with the feet.  After Wednesday's acupuncture session it seems like things are more prevalent, more focused which means hurting a bit more.  But that could mean that we're focusing the issue towards relieving it. Or it could be my addled brain playing games with me!

The lack of sleep and this cold are getting to me.  I really don't have any focus and can't get things done.  If it takes longer than 5-10 minutes I'm lost.  Writing this post has been severely difficult and I've stopped twice!

More later - going to take a shower to wake up!

Wednesday, March 13, 2013

SCT Day 43 - further update

We have a new pope - and hopefully he can cure my cold as I was wrong this morning, it's not gone away.  I broke down and took two mucinex d around 10a and my nose has been running all day long.  So I think I have a few more days of this mess - no fever and nothing else but this sniffling alone is enough to be a pain in the arse!

On the sleep side, obviously the cold didn't help with the sleep.  I actually did feel like I slept better last night (which is why I thought the cold was going away) but I don't feel any more rested now.  I did meet up with my acupuncturist today and she obliged me by taking a photograph!
You have to look closely as the 'white' part you see is simply the 'holder' for the acupuncture needle.   I told the Doc about the issues I'm having with neuropathy and how I believe that's affecting my sleep.  There are four needles placed in the webbing between my toes.  Two on either side of my ankle, two in my foot and one on the top of my ankle.  You can't see it but there are more further up the leg. There was also one in my elbow.  All of this was repeated on the left side.

What you see in the picture is one electrical circuit.  There's a second, you can only see at the bottom of the photo.  Again, this is repeated on the other side of my body.  The hope is, by sending an electrical impulse down the pathways I can re-balance my Chi and clear any blockage that is causing the neuropathy in my feet.  This is a very uneducated description and the Doc would probably say I'm wrong in some way but that's my story and I'm sticking to it!

Enjoy the photo!

bill

SCT Day 43 - just an update

I believe the cold is on it's way out.  I slept a bit better last night but was still up a minimum of 6 times.  But I was in bed around 9 and not up till about 630.  that's it for now.

Tuesday, March 12, 2013

SCT Day 42 - first cold of the winter

I took nothing last night and I was back to my old ways.  However, on top of this, I've gotten my first cold of the season.  Just left a message for the NPs to see if I can take a mucinex or similar to clear up the congestion.  The post nasal has left the back of my throat raw as well.  I slept with a mask last night just to keep the humidity when I would breathe.

The neuropathy is still there, nothing new to report on that end and I'm back for acupuncture tomorrow (Wed).  So aside from referring to myself as his lordship, nothing much has changed.


Monday, March 11, 2013

Lord William The Bald!

So I received notice today that I was no longer allowed to refer to myself as William McHugh. I now am required to refer to myself as Lord William - I added "The Bald" part.

I've not been knighted but compliments of my mate PJ, I now own a plot of land in Glencoe, Scotland and can officially call myself a Lord. You can google "56.6279234677418 - 5.30908752335155" and find where my plot is located. I can now get pens and stationary with my "Lordship" nicely emblazoned! I'm also allowed to visit my plot whenever I like. I actually have been right by there when I was younger (my mother's side is from Greenock and was part of the Fraser clan).

At some point I will venture over and see if perhaps I could camp on my plot, my new hearth, my (and I quote) "precisely defined as a plot one foot by one foot...."

I will have to check with the other Lords and Ladies to see if can camp on their neighboring hearth! With gracious thanks and fondest memories of my new "home", adieu!


- Posted using BlogPress from my iPad

Location:Glencoe, Scotland

SCT Day 41 - not much else to say

It took a large latte with an extra shot to get me out of the Ativan funk.  I can't say I felt like I slept better but I felt like a noodle most of the day.  And yesterday was all basketball, all the time.  Got Dilyn home from the 'banquet' around 8p and I was in bed by 9p with 2 mg of Ativan under my belt!  Didn't catch what time I took them but I was up at 1030, 130 and a few other times on that as well.

I'm going to try and sleep with nothing tonight - no meds - and see what happens.  The neuropathy is still there and my next visit w/ the acupuncturist is Wednesday.  For now, i'm having another coffee to try and keep my eyes open - I tried to take a nap and that didn't work either.  what a mess!

cheers....bill

Sunday, March 10, 2013

SCT Day40 - duuudddee!

Took 2 Ativan last night. I did wake up to turn the tv off and one other time. Got up this morning after 7. And in still stoned. I think I slept better burning still stoned!

Going to give this one more night and then try without. For now it's basketball championships all day today. Tonight ill try to watch the IRL/FRA match! No spoilers please

Sorry Amanda, I'm basketball today so no rose this afternoon.

Saturday, March 9, 2013

SCT Day 39 - Ativan 1.5

So I cut back to 1.5 last night as I felt the night before was too strong. Well I woke up at 130 and then a few other times. Once with an unbelievably dry throat.

So I'm going with two tabs for now (2mg) and will ride out that wave for awhile and see what happens. I need to start getting something!

Bye all.


- Posted using BlogPress from my iPhone

Friday, March 8, 2013

Various Pix!

Yesterday I got a coffee discount as the maker loved my hat!  Had to show it here!

I then me a friend for lunch - a 'lunch' place called Tiffin Walla - I knew what a Tiffin was so I thought it would be a good idea, the place wasn't dodgy (A rating) and I'd been told the Dosa's were great.  We started w/ pakora's and samosa's (which were smothered with sauce, an interesting way to have a samosa).  Then came the dosa - for reference, the fork is normal sized and the plate on which the fork is resting is a regular 'salad' plate, just smaller than a regular entree plate.

Lastly, a pic for Bob who just returned from his transplant.  Hopefully his wife Amanda has a few of these tucked away for this weekend.  Give the man a meat pie and a drop of the sweet nectar to enjoy the rugby! 


SCT Day 38 - The Ativan One Two

Yesterday I spoke to my friend the Nurse Pract, gave her the background on what occurred the prior night what I felt and what I knew had happened.  I was giving her the background and not expecting her to up the ante but she said go ahead and try two (two 1mg tablets) and it seems like that may have been the number, plus some!

I've not confirmed with my wife yet but I closed my book (iPad) 22:49, my tweet stating I had taken the Ativan was at 22:20.  When I put he iPad down I didn't fall straight asleep.  I was paying attention to what was going on, trying to be "scientific" and evaluating the effects as they occurred.  Lying in bed you don't necessarily have the same perspective (less dizzy, drunken feeling).  But as I lay there I did notice certain twitches occurring.  Almost like a nervous twitch or energy build up, my leg or my hand or finger would twitch.  I'm bringing this up as I had a similar occurrence while doing acupuncture.  If I started to sleep, i would get a shock in my left leg, waking me back up.

It's almost like my body is saying the neuropathy is here and for that reason you can't go to sleep.  However, Ativan packs a 1-2 punch and it wasn't long before I was out like a light.  I'm not aware of any Ambien-style side effects, but I didn't see a clock till about 04:40 and ended up sleeping in till about 06:10.

I know that Ativan is short lasting but I still feel a bit drugged.  I was quite impressed that I carved up half a melon and an entire mango and do not need even a band aid!  In the end, I'm marking this a win but we'll see how the rest of the day goes.  I'll speak to my friend and potentially drop back to 1.5 tabs tonight.

for now - sweet dreams!

Thursday, March 7, 2013

SCT Day 37 - Ativan vs Ambien

So here's the big compare!  As mentioned, I got the Ativan (Lorazepam) yesterday and the dosage calls for 1 tablet every 8 hours, max three tablets per day.  Well I'm only taking it at night, not during the day, so do I take one or two, to knock me out?  These are 1mg tablets (sometimes they're given in .5mg tablets).  I tried to track the experiment via twitter which really didn't go over so well but here are my posts.


 taken. Will try to document when I wake up 

 finally put book down 10:11p up at 01:20 and up now for potty 02:32    


bill mchugh ‏@PromotingGHL
 I woke at 5:54 not sure how all this played out and how well I did. Got to make the donuts!    


By 5:54 I forgot I was tweeting about Ativan, not Ambien!  Ativan is supposed to be a quick acting drug, offering a very calm and relaxed feeling that will help you fall asleep.  Taking too much will leave you not caring about much and being very clumsy ("clumbsy" as noted in one google search).  I spoke to my friend the NP and she advised one tablet.  Noting the time frames above, I took the Ativan at 21:43 and didn't put my book down till 22:10.  I actually felt a bit like my heart was racing.  I didn't feel 'drugged', drunk or anything similar - just tired.  So from 22:10 till 01:20 is about three hours.  From 02:32 till 05:54 is another three hours.  I don't remember getting up in that last bit but it is possible. 

One other note, thanks to Amy G via Twitter who said she had similar sleep issues for the first two months following her SCT.  So it gives me a time frame and expectation to look at.
I feel better today than I did two days ago (coming off the Ambien hangover) but still don't necessarily feel like I've had a full nights sleep.  I'll reiterate this to my NP to ask if I should up the dosage tonight or just go the way I'm going.  I also don't feel much difference in the p/n but I haven't gone on my walk yet.  Will know better after that.  For now, off to the showers and then off for my walk before the real storm hits today!  Supposed to be rain and snow and 40mph winds all day - what fun!
On a side note - Bob, the MM patient in the UK, is being released today, day 14 - congrats Bob.  He'll be home to watch all the rugby this weekend.  I, however, are limited by what BBC America allows me to watch.  This weekend it will be Ireland/Frahnz and we will be wearing our green, WHEN we get to watch the match.  This weekend is also the 4th/5th grade intramural basketball championships.  Dilyn has a game on Friday and if they win they have a game on Saturday, etc.  If they don't win, we'll have games to watch on Saturday, etc - all of it ending in a big event on sunday in the parish hall.  
I am SOOOO excited! :)

Wednesday, March 6, 2013

SCT Day 36 - The Point Detailed


Just got back from labs at Mt Sinai and acupuncture at my generalist.  On the acupuncture front we're going to go once per week.  Today was my first visit (I've seen the doc for acupuncture before but first visit for this issue).  Unfortunately I forgot to ask that she take a picture until after she stuck me full of needles.  I've got another appt next Wed (at Noon I believe) and will have pics then.

For now - I had needles in two parts of my hands (both hands), on both sides of my leg (above ankle, below calf), two parts of my feet and in between the toes in two places.  I also had two needles in my stomach, just below the belly button.  I had four electrical circuits going - two with a slow tap and the other two with more of a buzz feeling.

I was left alone for 20 minutes.  Each time I almost fell asleep I would feel a massive jolt on the left leg (the tapping circuit, not the buzzing circuit.)  Not sure why but I explained it to the doc who was also surprised.  

At the end of the day I'm not noticing anything different.  I will be going once a week for now and am hoping to notice a difference in my feet and calf with respect to the neuropathy.  On the sleep front I did get a prescription for Ativan and am hoping I can use that to put me to sleep tonight!  

Here's wishing me luck! 

cheers...bill

SCT Day36 - New Drug & Too The Point

Day 36 and I was dead tired by 9ish last night.  I was asleep shortly thereafter and woke up refreshed and feeling wonderful - except it was 00:30 in the morning.  I was up again at 01:30 and 03:something and then 04:something, etc.  So where I may have slept for three hours straight at the start of the night, that wasn't happening through the rest of the day.

Today I'm back to Mt Sinai for my first month out visit.  I don't have a doctor's appointment but I am going to go Texas and lasoo a nurse practitioner till she gives me something other than Ambien to help me sleep.  Hopefully tonight I'll have a new drug to try!  yippee!

I also see the acupuncturist today.  This is a real doctor, in my generalists office, who has a license in acupuncture.  I'm hoping this will help w/ the p/n.  I'll work with her on a schedule of how often I can go.

that is all for now!

bill

Tuesday, March 5, 2013

SCT Day 35 - better?

I think I feel better.  I think the Ambien cloud is finally wearing off though still not quite clear!  I believe I slept better.  I did get up one night (potty) and though I woke up through the night I didn't look to see what time it was.  So not a 'restful' night but I think it's been better than before.  I'm also going to force myself to be a bit more motivated then yesterday.  I was a sloth yesterday - I just can't focus and get things done!

In for more bloodwork tomorrow.

cheers and thanks for reading!

Monday, March 4, 2013

SCT Day34 - No Ambien

I did get some sleep - and then this morning, I saw the light...in the darkness...a glimmer that slowly turned brighter as my mind came more aware.  I was in Podunk, IL (why?  WTFKs) and the light was my wife getting ready for her shower - I don't believe the Ambien has worn off! :)

No real change last night.  I was in bed at 00:02 and up at 01:30, 03:30, 04:40 and 05:30.  Those times aren't exact but I did not take a potty break during any of those times (as far as I can remember).  I still feel like I have an Ambien hangover but nothing bad.  My back is a little stiff but not like it was yesterday morning or the day prior.  I don't think I got any more or less sleep and will hopefully hear from the doctor today.  I think I may ask for Ativan or similar to be taken at my discretion when needed.  Even then keeping it to when I really just haven't gotten any sleep.

Wednesday I go in for bloodwork and then to my generalist for acupuncture to help with the neuropathy.  This isn't something that works overnight so I'll have to think long haul on this one.

For now - please pass along best wishes to Vicky and Bob - both at Day 11 of their SCT (one in Canada and one in the UK).  Here's hoping they've turned the corner!

bill

Sunday, March 3, 2013

Need Mult Myeloma Head Shots!

Whilst I have a moment of sanity, I have a request for all your Myeloma-ites! I'm looking for bald pictures - any and all bald pictures! I got the idea when I spoke w/ some of you, saying you were embarrassed when you lost your hair. I'd like to get as many FUN or different bald shots as possible. If you don't have a "fun" shot then send me what you have. I'm going to try and put together a calendar that we can provide to the MMRF, Myeloma UK or any other related charity to help raise funds. Here's what I want:
1) if an "old hat" send me your pic - if you want to have some fun with it first (replace the sunset, paint a picture, whatever) have at it. If you're newly bald, do something cool and different. You don't have to show your face, you can have your kids/sig other/neighbor/total stranger, paint a picture on your head! If you dont have a bald shot but you have a good shot of when you're going through all this (thinking Mike and the Zebra!) then send it along!
2) send me what you want related to your photo. I'm originally thinking: name, date of diagnosis, type of MM (iga, igg, flc) and either date of picture, date of SCT or date of harvest (or whatever date you want!)
3) ALL PICTURES WILL BE APPROVED BY OWNER BEFORE ANYTHING IS DISTRIBUTED - i'm not a professional and dont hope to make anything out of this than awareness for the disease and funds for our relevant charities.
4) final version of calendar will also be approved by everyone included within the calendar!
5) I will work w/ MMRF and Myeloma UK as I have contacts at each. again, the goal here is to provide them a final (or close to final) product that they can then distribute. I also hope that all of us will help distribute as well. I will also reach out to the primary drug companies to see if they will sponsor and help to offset costs!
6) Pics can be sent to promotingglobalhairloss@gmail.com

I'm sending this via Facebook and Twitter and if everyone else can send via whatever other method works for them then great. It's Myeloma awareness month - but this is really for those that are unfortunately already aware! I'm hoping to get something done soonish so that we can get this together for a 2014 calendar!

If you think I'm barking up the wrong tree on this one please let me know. Otherwise - show me your baldness!

Cheers...bill


PS - thanks to Shells Porter, Marianne and a few others that have already sent me some pics!  Looking forward to more! 

SCT Day 33 - Done With Ambien - no workee!

I shut down my book (iPad) at 23:22 last night.  I took my ambien (as reported earlier) around 21:45.  I got up for my first (and only) potty break at 05:30.  I got out of bed at 06:10.  In between 23:22 and 05:30 I was up continuously - as I was drugged (apparently Ambien is climbing as the new date rape drug - wonderful!) I can't tell exactly what times or how often but suffice it to say it was in hour to hour and a half increments.  between 05:30 and 06:10 I might have slept for about 10 minutes.  At the end of the day, or should I say the beginning of the day, the Ambien "no workee".

More importantly, my son had his basketball game yesterday and wanted to get there early to practice.  Mom promised he could go to Dunkin Donuts for a breakfast sandwich and then over to the court by 09:30.  But he wanted to be on the court by 09:30, really by 09:00.  So we left our house at 08:00 (ish).   His game WASN'T UNTIL 12:15!  None of this is really relevant - the relevant point is that during the first hour or so of being at the gym I noticed my back was killing me.  I assumed it was from sitting in the bleachers, with no support behind you.  However, I've done this before and never had a problem.  So i started sitting in a chair, sat at the top of the bleachers to use the back wall, finally just stood.  Got home and was bending and twisting to find a way to stretch out my back.  I took a nap and put the Olbas Oil (like tiger balm) on my back to help soothe but that didn't help.  Last night I did the same and this morning I tried putting a pillow under my bottom to force my back to stretch.  Nothing worked.

This morning I googled "ambient muscle pain" and found a number of people that reported severe back pain that went away once they stopped taking Ambien.  I double checked the wikipedia page for Zolpidem (which is where I found the date rape reference) and did not see anything there.  This will be added to my Drugs and Their Effects page soon.

For now, I've messaged the doctors (via the Epic My Chart portal - aka EpicFail!) to identify other options for sleep as I do not want to take the Ambien.  I am hoping to prove my theory tomorrow when the back pain goes away (but that may take two to three days so will leave it at that.)

Have a great day everyone!

Saturday, March 2, 2013

Am I Too Big?

It was about 21:45 when I took the Ambien. It was about 21:47 when I got the call from the cub scouts sleep over across the street. The projector wasn't working and they wondered if I could walk them thru it.
The system over there is a mess so I went over to try and get them set up. I warned them, at arrival, that I had just taken an Ambien and if I passed out by the equipment rack just set me up in one of the tents!
Bottom line I've been back for about 30 min and I still don't feel tired. Maybe the Ambien isn't working because the dose is too small or I'm too big! After Big Bang theory I'm heading to bed anyways but don't believe I'll see much difference in the morning.
Good night folks.
- Posted using BlogPress from my iPhone

SCT Day 32 Update - fine print verified

So I was speaking with someone (who shall remain nameless) regarding my status and what is going on currently. I explained that today was day 2 of Ambien and it just wasn't really working. She also mentioned that it was too much for her and that it caused what I refer to as the NyQuil cloud the next day. She started telling me about some of the side effects and I jokingly said I just wrote a post about that and handed over my phone at the part in question.

At that point she said, "that's exactly what happened to me! I woke up the next morning and my husband told me what happened." It wasn't making food she was talking about! This is a whole different marketing angle!

On my front, I'm taking the Ambien again tonight and will see what happens. I did take an hour nap this afternoon and felt better after. Actually, it was after I polished off the two meat pies from the Tuck Shop that I felt really good!

So wish me luck and a good 3 hours of sleep (straight!)


- Posted using BlogPress from my iPad

SCT Day 32 - Ambien Day 2


So the Ambien isn't doing as expected.  Last night again, up pretty much every hour.  I can't remember it as well as I was previously but I'm definitely getting up (and not making a sandwich, driving or any of the other adverse effects mentioned earlier.)  Going to try one more night and see what happens.  If still unsuccessful I think I'll stop and see what happens naturally and hold the Ambien in reserve.   I feel ok, not much different than before as I'm not getting physically out of bed till 0700.  But now I have that Nyquil (cough medicine) cloud.
Off to a full day of kids basketball (as the son wants to get there early, really early, to practice!
Have a great day everyone!


Friday, March 1, 2013

SCT Day 31 - The Fine Print

First, my status - the doc was able to get a scrip for Ambien (Zolpidem - i got a generic version) so I could take that last night.  Where I feel like I slept it still wasn't straight through.  I reminded myself, everytime I woke up, to remember what time it was.  Sort of like meeting a new person, say their name three times and you'll never forget it.  Yeah....try that when you're supremely intoxicated and see if it works - that's what last night was like.  Putting on Olbas Oil and Cocoa Butter before bed, to assist with the peripheral neuropathy actually does help, unfortunately not for the entire night.  the one thing it DOES do, is allow you to skate across any hardwood floor, in bare feet!  Now try and do that while on Ambien - keeping your balance on the way to the bathroom, walking slowly so as not to enhance the skating effect!  I was able to make it to the potty with no accidents.

At the end of the day, I still woke up three or four times and at the end of my eight hours I had been up for an hour beforehand.  I'm hoping that this just takes time.  I feel more rested but still don't feel like I got a full night's rest.  But let's talk about the Fine Print.

As those of you have been reading for awhile, I started Promoting Global Hair Loss to raise money for The MMRF.  But the reason I chose to do that is because the Fine Print on the Cytoxan was INCORRECT!  The Fine Print (or maybe it was the doctors) said I could lose my hair in 8-10 days.  I think it happened to me after day 13 or 15 - bottom line, it was not something I was expecting.  I had thought it was past and it wasn't and that's a demotivating factor.  As you can tell, it was simply a speed bump in the road of life and I've gotten over it and raised around $55,000 in the process.  So now, I've taken to making sure I read the fine print and ask relevant questions so I can understand what may occur, when and set my expectations appropriately.  Everyone sees the Viagra commercials, or any other AstraZeneca/Pfizer make your life better drug commercials where they are required to state all the side effects.  I'll send a MMRF bracelet to the first person that can list 3 of the side effects mentioned in the viagra commercial (except for the erection lasting longer than 4 hours which is the only one EVERYONE seems to remember) but you can't go youtube or look it up on google - this has to be from memory and I WILL KNOW!

Which brings me to the Ambien - have YOU read the potential side effects?  I'm not sure if I can appropriately set my expectations for this one.   And I quote,

"Rarely, after taking this drug, people have gotten out of bed and driven vehicles while not fully awake ("sleep-driving).  People have also sleepwalked, prepared/eaten food, made phone calls, or had sex while not fully awake.  Often, these people do not remember these events.  This problem can be dangerous to you and others." END QUOTE

"Uhm, honey, I apologize, I really wasn't aware of what was going on, it was the drugs, honest....I'll never make you a peanut butter and mayonnaise sandwich again!"  :)

I was going to end it there but saw this in Wikipedia:
Some users have reported unexplained sleepwalking[14][original research?] while using zolpidem, as well as sleep driving, binge eating while asleep, and performing other daily tasks while sleeping. Research by Australia's National Prescribing Service found these events occur mostly after the first dose taken, or within a few days of starting therapy.[15] Rare reports of sexual parasomnia episodes related to zolpidem intake have also been reported.[16] Sleepwalkers can sometimes perform these tasks as normally as they might if they were awake. They can sometimes carry on complex conversations and respond appropriately to questions or statements, so much so that observers may believe them to be awake. This is in contrast to "typical" sleep talking, which can usually be identified easily and is characterised by incoherent speech that often has no relevance to the situation or that is so disorganised as to be completely unintelligible.

Figures the Australian's were the first to document the 'sexual parasomnia' effect.  I can see myself carrying on complex conversations and responding appropriately without any knowledge or foresight of doing so.  Heck, that happens all the time with me - and I can't always blame the chemo (thought I'm doing so now!)

Enjoy the read and enjoy the Fine Print!