Sunday June 3rd,

I worked 70 hours this week.  It makes it tough to get exercise in and not binge eat when you walk in the door at midnight starving.  But wow did I have a healthy day today.  This morning, I got to sleep, yeah!!, and then I went on a 9.5 mile bike ride and I tried to push myself.  When I got home my kid and I hit the pool and Jacuzzi and it felt great to swim a few laps and stretch out a bit.  Then I grilled some fresh chicken breasts I had marinading and added to that salad, corn on the cob, sweet potato and brown rice.  The chicken was great, juicy and tender and I had fresh cherries for dessert.

I have lots to do around the house, but I am going to take the opportunity I have now to go to bed at a decent time.  I'm hoping those crazy hours won't have to happen again soon.  They can't this week anyway.  My daughter is graduating 8th grade and has a band concert tomorrow, awards ceremony Tuesday and 8th grade dance Friday.  I have a concert Sat. and rehearsals Weds. on.  This is going to be a stressful week, so I'm going to start today eating well and getting plenty of sleep.

Part of this also involves calling my sleep doc.  I have had a really rough time with my RLS/PLMD.  It is so crazy, the more fatigued I am, the worse my RLS/PLMD is.  It becomes a horrible vicious cycle.  I feel more at rest now so hopefully I will feel more relaxed when I try to sleep.

Someone mentioned that I sound like I am having apnea problems and I certainly have the fatigue and concentration/memory issues.  I had a sleep study around 8 months ago and my doc. upped my pressure from 12 to 15.  I can feel it push my airway wide open when I turn it on.  It is a bizarre feeling, but probably only those of us who know what a constricted airway feels like would know.

Oh, I'm holding steady at -6 pounds starting weight.  I want to drop 6 more pounds and work on my cardiovascular health before my first surgery on July 20th.

Today is a good start.

Vicki



Last edited by Vicki on Sun Aug 05, 2007 11:24 pm; edited 1 time in total
_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

July 9th, 2007

I just returned from 10 days in the Midwest.  It was great seeing relatives and friends that I haven't seen in years and decades.  I also appreciated it because, unlike here in California where everyone is 50 pounds lighter than me, everyone there is 50 pounds heavier than me.  Therefore, it gave me the misconception that I could eat all the very-good-but-very-bad-for-you Midwest food and desserts that I wanted.

It started with the Un-Wedding.  The wedding was called off, but the psycho un-bride wanted her wedding so she did everything but the ceremony itself.  Besides the un-wedding rehearsal dinner and un-wedding reception, there was a four hour group tour of St. Louis with the first stop being the famous Ted Drews frozen custard stand.  I was proud of myself for ordering the smallest serving.  At the un-wedding reception, I had a strong urge to trip and fall into the un-wedding cake, but I controlled myself and ate it instead.  Yum, good food.

Then it was down to the Ozarks where my mother kept the kitchen stocked with potato chips and pineapple upside-down cake.  She also got lots of fruit at my request.  Guess which I ate more of.  At least I tried to eat as much fruit as bad stuff.  A bunch of family folk (I’m slipping into Hillbilly talk) went to Branson where you can’t step outside of your car without your arteries clogging.  I actually ate a tuna wrap one of the days I was down there.  When I got my tuna wrap I asked if they had baked Lays and they looked at my like I was insane.

We drove up to Northern Missouri for a family reunion.  I could not resist the home made ice cream which is a family reunion tradition.  One night out I tried to find non-fried food at the buffet.  As I was looking at what they had, I lifted up what I thought was some fried chicken and was a taken aback to discover a pair of legs hanging in the tongs.  I should have expected it and after I could breathe again, I got a piece that didn’t look so frog-leggy for myself and to try to get my kid to eat.  She wouldn’t buy my “try it, it tastes like chickenâ€� because I wouldn’t tell her what it was and she knows my “this-is-something-you-won’t-eat-if-I-tell-you-what-it-isâ€� voice.  Frog legs really do taste like chicken.

So now I’m back and have no desire to stand on the scale until I’ve detoxed for a week.  My surgery is in 11 days and obviously I am not going to be at the weight I wanted to be going into it.  Before my vacation I was hitting the gym just to try to remind my cardiovascular system to pump blood so I’ll continue that and go back to being cognate of what I put into my mouth.  I don’t know if anyone else ever has this problem, but it is difficult for me to go back to eating only what I really need (and the more empty feeling that goes with that) after I have spent some time being full all of the time.

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

July 22

So I had my surgery Friday.  I didn't like my anesthesiologist this time but I got through it.  He was freaked out that I had apnea and wanted to do a spinal which I refused for a variety of reasons.  He concern, which was valid, was that since anesthesia increases the laxity of the throat, I'd be harder to intubate.  He also, for some reason, refused to do a regional leg block that I requested.  That worked out OK too because I, very fortunately, am in very little pain.

Anyway, I cowrote the CPAP use in a hospital setting on the ASAA main page.  Knowing what you need to do doesn't make any of it easier, but at least it gets your apnea treated.  This time it wasn't so much that they wouldn't let me do what I needed to do, they were just absolutely clueless and ignorant.  Like they kept thinking I was using oxygen, "no, it is just a little fan that blows filtered room air"  (they were worred about sparks and explosions) or that I only used it at night, "no I use it anytime I sleep".

I have a "reactive airway" which means I have the equivalent to an asthma attack when my throat gets aggravated for whatever reason.  Therefore, after I was extubated Friday night I had a serious asthma attack and had to stay very calm to breath for hours while they tried to get a Rx for meds.  While an APAP is nice after anesthesia to compensate for the increased laxity due to the anesthesia, APAPs are contraindicated with any lung disorder (like COPD) or asthma because they detect the decreased airflow as an apnea.  Therefore, it was fortunate that I had it set on CPAP mode when my asthma kicked in.  I was plenty awake trying to breath anyway.

I have been using a RemStar Pro and just got a brand new M-series to take to the hospital.  In fact I was pulling it out of the packing and reading the instruction manual on the ride to the hospital.  As many of you know, the RemStar Pro has a humidifier outside while the M-Series the humidifier is out of sight and on the inside.  When we packed up my APAP, I didn't realize until half-way home that we had packed it with water still in it.  Of course it had been put on its side and the machine was flooded.

An emergency call to Respironics confimed my fears that I need to replace it.  Depite attempts to use a different DME, I had to use Apria, who has given my nightmares in the past.  I was flat-out honest with them about how their service has been suboptimal and the steps I have taken (writing the CEO, writing a letter to my company's insurance liason) and I must say I got excellant care this time.  I hope it continues with this issue.  I am afraid I am out of luck with this one.  I'll let you know.

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

July 25, five days post op,

I have to say that I have gotten excellent care from Apria.  Something I never, ever thought I'd say.  When I called them up to work with them (I basically ran out of options as to who I could use), I told them that I had had terrible care and specifically told them what had happened, told them I had already written letters to Apria's CEO and my company's patient liason and told them my sleep doc. told me not to use them.  I also sent them them a very specific fax describing exactly what I wanted machine and mask wise and what the settings were supposed to be.

Anyway, if you read my post above, you will see that my brand-new, fresh out-of-the-box Respironics M-series APAP was flooded with water when I left the hospital.  Because Apria said my insurance requires renting first (good thing in this case), they will replace the whole thing with a new one.  Big whew!!  They are coming out today to drop it off.

Today I am in considerably more pain.  I still think it is due to the staples/stitches pulling.  I can see the 1 1/2 incision for my tibial bone graft and it looks like they just threw a few stitches in there to hold it together, yuk.  I am having a really hard time finding pain killers that don't make me throw up and I keep eating breading, etc. to try to settle my stomach.  I know this isn't the time to watch what I eat, but it is extremely frustrating knowing that the pounds are piling on as I lay here.  I have been eating fruit too and I think I'd better hold back on the acidic stuff (grapes, oranges, cherries, all the good stuff) until my stomach settles down.  I usually use egg beaters instead of real eggs, but I bought real eggs so my mom mom could make egg custard (the Jello Americana box kind, my comfort food) but we can't find it anywhere for some reason.  Therefore, I have been having a craving for real eggs and have been having eggs (yes plural) and toast along with my weight loss shake, for breakfast.  There is probably 500 calories right there  

Feeling very sorry for myself Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Today (tonight/really tomorrow) is Aug. 4.  Urrrrgggg Apria.  They only brought out the APAP and not the humidifier.  A call to "Eddie" was futile.  She said that they will not replace a flooded humidifier because Respironics will not replace it, that they have never replaced one (then I wondered what she did with the M-series recall) and I should just use it with the new APAP.  I told her I'd call Respironics and double check.  Lovely, wonderful, goddess Amber at Respironics said "it is under warranty, yes we will replace it".  So she called Apria for me and had a little chat with Eddie.  That was Monday and Amber relayed to me that Eddie was going to have to confer with her boss who wasn't going to be back until today.  So today I called and inquired as to when my new APAP and humidifier was to be delivered.  Eddie told me they would bring it over tomorrow (Saturday).  We'll see.

I am fortunate because I have a functioning CPAP.  It really perturbs me that this has taken 2 weeks and had I not had a backup, my post-surgery situation would be much more dire.  My insurance company and my work patient liaison are getting a letter detailing this experience and educating them as to the potential consequences of said experience.

I am not in pain, but I am very, very uncomfortable.  My doc took my sutures out and that helped a lot but there is something else in there under my cast and not near my incisions that feels like raw skin.  I get up and hang out on the forum and then I lay down and read and fall asleep without my CPAP .  All I do in between is eat.  This sucks.  I slept 8 hours straight night before last for the first time in months really, but last night was a 3 hour CPAP, 2 hour without night.  I think I might have had some severe shooting pain wake me up last night.  Maybe my electrical gizmo shorted out or something, I'm really not sure if pain woke me up.  It is hard to have a sleep night/work day type schedule when you can't do anything.

The only time I can sleep peacefully is when I take pain meds and I keep taking them, laying down to read and falling asleep before I get my mask on.  No need to tell me the obvious, put the mask on first   .

Oh, and I watch TV.  Michael Moore was on Jay Leno and he said he is losing 1 pound a week and invited people to join him.  Obviously, I can't right now, but I hope with all of my heart this 2 year nightmare will be over in 6 more weeks and I can gingerly start to do the swim, bike, runs of the triathlons that I had just gotten into before this all happened.  The other piece is my sleep.  I know my apnea is being compensated, I actually feel my throat open up when my CPAP comes on, but I am uncomfortable going to sleep.  It feels like some kind of unnatural state, like I'm going to enter some drug induced altered reality and I don't want to go there.  This was happening long before my surgery so it isn't pain med. related.  It also is not the same as unconsciously not wanting to sleep because I will be suffocated.

OK, it is 2:00 AM, nobody will chat with me and I need to eat something (yet again) so I can take my pain meds.  Otherwise, my stomach gets upset.  I'll put my mask on when I lay down, promise.

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Sept. 5, 2007

I don't like posting when I am going crazy, so I waited awhile.  Maybe that is exactly when I should post.  I am 12 days from finding out if I can walk again.  After this two year nightmare, you would think that 12 days would be nothing, but it seems so far away.

The time will go fast however because my company is laying off >2500 people and I decided to accept their "Voluntary Transition Package" before they start the involuntary layoffs.  Aside from watching my father die, making that decision was one of the hardest things I've ever had to do, hence the craziness.  Sept. 17 (which is the same day I get my cast off), I will find out if my company accepts my acceptance of their VTP.  That is, if they think I am too critical to let go.  Karma comes around because I am apparently very marketable and so I seem to be sitting in a comfortable position right now.

I haven't been binge or emotional eating because my anxiety level was out the roof.  Usually I have no problem eating my problems.  OK, I did have dark chocolate Dove candy today.  But that was only because I am out of my chocolate weight loss shake and I had to have my daily chocolate fix.  There are many more details to work out like how to transition my special needs kid if I move; I need wrist surgery before I can work again, etc.  Oh yeah, and I want to lose 10 pounds so that I am just fat and not obese when I start doing face to face interviews (how I love phone interviews).  To that end I bought a bunch of Pilates CDs and I have to start doing them.  When the cast comes off, I can start back on the elliptical and riding my bike, at least until my wrist surgery.  I think I’ll take some of my severance package and buy a nice interview suit so I feel confident.

I am having huge issues with sleep/anxiety and know that I need more sleep.  I’m not being a good patient and at least washing the silicone part of my mask, so it has been leaking a lot and waking me up.  I have to work on that.  I also need to take my meds. earlier so that my Requip is working when I try to go to sleep.  As an aside, I went to a bachelorette party last weekend.  I don't know if it was because I didn't take my meds. until I got home at one or because I had been drinking (ummmm, maybe I didn't even take my meds. and I had a limo ride thank you) but my RLS drove me crazy.  I was still thrashing at 3 AM.

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Hi Vicki,

I have been catching up on your posts. Your description of the trip to the midwest was great. I am familiar with the fried-foods, including the frog legs! My fave is deep-fried biscuits.

I think that I wrote that I would post if I lost any weight or had any successful tips for doing so. Well.....

I hope that your foot is healing, and it sounds like the job situation will work out for you, although it is as scary as heck to be in between jobs.

While reading about your difficulty in sleeping, it sounds like your biological sleep clock has gotten out of whack. I am up on this because my sleep doc keeps saying that I have to practice sleep hygiene, but it is not easy and I really struggle with it. My symptoms are at their worst in the morning, and I am trying to eliminate caffeine, so I am like a sloggy zombie everyday. I need to find a zombie emoticon.

Anyway hoping for the best.

Guest MJ (Mary)

Vicky,

What has been going on lately?  I miss reading your posts!

Peke


_________________
Res-Med VPAP - Adapt SV
FP Flexifit 406 mask
with Narcolepsy on the side!!!!

Today is Nov. 16, 2007.

Thanks for the thoughts Peke!  It has been rough, but today is, hopefully, the start of something good.

Since Sept. 20th, for the first time in over two years since foot reconstruction surgery and subsequent complications, I slowly started walking.  I was in a big black boot until about a month ago.  It will probably take another year to be "normal" again.  Getting to where I am now therefore, has been a gradual process which has not been easy for this most impatient patient!!

I have been working with a phenomenal physical therapist and we started doing gait work a couple of weeks ago.  We have been working on strengthening the fine and gross foot muscles, eliminating my limp (heel to toe Vicki!!) and proprioception, retraining my nerves to understand where my foot is in relationship to my body and environment.  I started in the gym on the elliptical three weeks ago and yesterday and today, I started RUNNING!  Not much, I have to be very careful and concentrate, but I can do it.  I ran/walked 1/3 mile today.  I am here after seriously considering amputation if my third surgery in July failed.

The not-so-great news is that my company laid off 14% of it workforce.  I was afraid of not having medical insurance and so accepted a severance packagem.  My last day was Friday.  I didn’t want to have to quit and possibly move and as Friday approached I had terrific anxiety and panic.  It was just like when my father was very ill and I was watching him die, something awful happening and being completely powerless to stop it.

I am looking for a job, but I have a pre-existing wrist problem which was exacerbated by my work and I cannot work again until I have major wrist reconstructive surgery.  That is going to happen Dec. 7th, the same day my dad died, Pearl Harbor day.  It gives me an uncomfortable feeling.  But I have two holiday concerts to perform in.  Music is one of the most important aspects of my life (right up there with my daughter and being a moderator on this forum) so I was relieved that the week of Dec. 2 was the soonest we could schedule it.  My doc. usually does surgeries on Monday at a surgical center, but when they found out I have apnea, they yanked me off the schedule and scheduled me at the hospital.

I have a long ways to go to get my health back.  It doesn’t help that my daughter bought a tub of cookie dough for a school fundraiser last week.  She KNOWS I do not want that in the house.  I have ZERO will power, especially for raw cookie dough and especially when this emotional eater is stressed.  In three days she and I had finished off the tub.  I kept trying to just throw it out, but then I’d open it up and go, OK one last spoonful and then it would end up back in the refrigerator.  Not helpful in my quest to regain my health and loose 40+ pounds.

But I went to the grocery store last night and bought lots of healthy stuff so I am back on the program.  Somehow I have to control myself over this Thanksgiving holiday (oh yeah right) and not eat the whole pecan pie I want to make or all the Ghirardelli chocolate chips I am using in the gourmet chocolate cheesecake I am making for a potluck.

Happy Thanksgiving everyone!!!  Vicki



Last edited by Vicki on Wed Nov 21, 2007 9:00 pm; edited 1 time in total
_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Oh Vicki<

I feel your pain and frustration and impatience! I hope your physical therapy goes well. Take it slowly!  

 I also am in the same boat as to trying to lose weight. That battle between do I really want to eat that and I don't need that, is tough. Usually I can convince myself that I REALLY do need it.  Usually sweets or chocolate.

Good Grief,  MY husband just came in to tell me that his jalepeno pepper bottle spilled juice into my cherry pie I made for Thanksgiving. I just finished making it. It is still hot from the oven.

Well, now it REALLY is HOT. Hmmmm, maybe a new diet. I won't eat it if it has pepper juice in it.

 Ok do I really need that cherry pie!  It is fruit! Fruit is good for me......

Peke


_________________
Res-Med VPAP - Adapt SV
FP Flexifit 406 mask
with Narcolepsy on the side!!!!

You have been on quite a journey, Vicki!

I will keep you in my thoughts the next few weeks.  Hope all goes well.
Barb


_________________
ResMed S8 Autoset... mask=ResMed Activa
Peace begins with each of us, as individuals

I am on my way to the hospital to have my right wrist reconstructed.  Given that my right hand is my work, my music and helpful for life in general, I am concerned.  I will be off-line for a few days.  Please send your thoughts this way.

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Vickie,

I am sending good thoughts your way!  Hopefully everything will go well for you.

Take care,

Peke


_________________
Res-Med VPAP - Adapt SV
FP Flexifit 406 mask
with Narcolepsy on the side!!!!

May 17, 2008

Wow time flies.  So I had my wrist surgery Dec. 7th.  Except for the fact that I had complications from my foot surgery which left me with the inability for me to walk for 2 1/2 years, the rehab from the wrist surgery has been much, much more painful and difficult.  My doc. said that it will take a couple of years of hard work before it gets to the best it can be.  But I am able to do most things I need/want to do including playing my music.

In the meantime, I started running January 1st.  The first time I ran 2.5 miles (not the first time I ran, but the first time I ran/walked that far), it took me 55 minutes.  Now I am run/walking 4 miles in about 52 minutes, around 13-14 minute miles.  Not bad for someone who was seriously considering amputating their foot last July and who started out 40+ pounds overweight.  I figure for every 5 pounds I lose, I drop 1 minute off my mile time.  I only have four minutes to go!!

I also joined a women’s only triathlon team.  They are amazing people who know what I went through (and the many challenges I continue to go through) and they encourage me literally every step of the way.  I am now biking 22 hilly miles without too much difficulty and swimming 1 2/3 miles (but I’m a swimmer so that is easy).  Which brings me to, since Jan., I have lost 18 pounds.  I have 20 (or so) more to go.

I am now no longer obese and am just overweight.  I am buying lots of cute clothes.  People who know me and see the changes tell me I look good (even sexy, WooHoo).  The catch is my sleep has been horrifically disturbed which caused me to lose my mind for a few weeks.  Anyway, a sleep study last week showed that my pressure needed to be decreased by 5 cmH2O, a drop from 14 to 9 cmH20.  I knew my CPAP was blowing my brains out.  It is sooo different, I am sleeping much better.  Long story, but I also had a surgeon yank out my ovaries without my consent or permission and apparently my estrogen levels were nonexistent which was also causing multiple problems including severe sleep disturbances.  So I’m working on a solution to get that fixed as well.  No wonder I went a little nuts (men don’t help either, I can’t figure out why I still love you).

Anyway, I have team training early so I’ve got to clear the tons of stuff off my bed (including new clothes, not a bad thing) and hit the hay.  Thank you guys for your encouragement as well.  I will keep you better informed of my progress, since I actually am progressing now.

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Sept, 10, 2008.  OK, so I'm not keeping this updated as much as I would like.  I have now lost 25 pounds (or more depending on when I started counting).  Everyone tells me I am looking great.  I am still 25 pounds over.  But my new, smaller size clothes fit well.  I think a lot of it is that I have gained a lot of muscle.  My distances for triathlon training are now,        1 2/3 mile swims, 30-40 mile hard hills bike ride, >5 mile walk/run.

My pressure has gone from 14 cmH2O to 9 cmH2O.  I love my new pressure (and clothes).  I am struggling a lot with my masks though.  Why can’t they make the perfect FF mask?  I think my mask problems are waking me up a lot.  But at least I am not hypoxic.  I hate the headgear on my F&P Flexifit and the bridge of the nose of my ResMed Quattro cuts my nose.  ****sigh****.  So last night I woke up and tried to put my Quattro headgear on my Flexifit.  It didn’t work too well.

I had a metabolic analysis done because I cannot run any faster than 14 minute miles.  Turns out if my heart rate is over 135, then I am in anaerobic metabolism using my sugar stores rather than fat.  That explained why my weight loss had stagnated and why I need lots of carbs. when I'd finish.  So I am doing most of the 90 minutes I train walking and a little running to keep up my conditioning.  Over the course of 3 months or so, I will have some physiological changes which will increase my aerobic capacity.  I don't feel them yet though!!

My last triathlon of the season is this Sunday and is called the Malibu Nautica.  It is a beautiful course.  I've trained on it quite a bit.  The bike is on the Pacific Coast Highway.  Last Friday, my training buddy, Lorraine, and I rode the course and then past the triathlon turnaround another 10 miles.  The ocean is on one side with the base of the Santa Monica Mountains on the other.  There are tall rocks, almost small islands, jutting out of the water where the coast makes the transition from going West to heading North.  Sometimes you can see the local dolphins playing in the water.  On the way back Lorraine had a flat tire and since neither of us have had to change a flat on a course before, it took us awhile before we got it right.

We got the tire changed and happened to be by a very popular sea food shack called "Neptune's Net".  Given that we had been out quite awhile and that is was lunch time.  We stopped in for a great lunch of steamed shrimp.  The remaining 10 miles back were with a happy, full tummy and energized body.

I have to get a swim in now and then tomorrow one more walk/run.  Then it is 2 days of relaxing and eating a nice pasta meal Saturday night.  The Nautica has a celebrity division.  Their wave (start) is before us regular folks so I never see them.  But I’m going to wander over to their bike rack in the transition area (where we have all of our stuff to go from one sport to another) and check out their bikes and maybe say hi.  I have this dream that Jennifer Lopez (who is doing the triathlon I read in People magazine) has a flat on the course and I help her fix it and then she is so grateful she gives me a million dollars.  Yea, dream on .  Here are the distances for this triathlon.  I am very ready, ½ mile swim, 19 mile bike and 4 mile run (or in my case run/walk).

Off to the pool.  See you after the triathlon!!

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Von Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.