In Mourning

I did something impulsive and in hindsight daft.  When I was at the library, I picked up random books that appealed to me as I walked around the stacks of new arrivals.  As a result, in addition to the fiction book I originally went there for I also left with a cookbook, a sewing/craft book, a book on ballet for adults and a biography.  When I got home I sat out on the deck with my new prizes.  I flipped through the sewing book looking at all the cool sewing craft projects.  The messenger bag made out of shrunken plastic grocery bags.  The date book made out of an inner tube.  Then I moved on to the ballet book and perused the pictures of adults of all ages standing at the ballet bar in ballet slippers, tights and skirts.  Then it was the cookbook where I found a recipe for pumpkin gnocchi.  Drool.  As the day wore on and I kept cycling through the pile, as I couldn't walk around due to the shakes, as I couldn't eat dinner due to my stomach being upset, as I barely made it out to the car to take my kid to school I got more and more upset.  What audacity I had thinking I could do any of these things.  What audacity I had even picking the books up in the first place.  In a moment of weakness I forgot I was ill.  As I read the books I was reminded of all the things I can no longer do.  I wanted to take a ballet class this summer to improve my figure skating.  Also, I just plain enjoy doing ballet.  I always have since I started when I was six.  I was in the middle of sewing my next competition outfit for skating which is currently hanging in the closet unfinished and no longer fits.  I can no longer cook which is a huge bone of contention between me and my husband.  Besides he probably wouldn't like pumpkin gnocchi even if I was well enough to make it anyway.  What audacity!  I cried.  Maybe someday I will be better.  Maybe someday I will dance, skate, sew and cook again.  For now I can only look at the pictures and cry.

Waiting for Godot



Agitated



Living Waiting for Godot

by Baffled

Not having a diagnosis, 

Not knowing if I will get better, 

Not knowing if I will get worse, 

Not knowing if I will be able to shower/cook/read/sleep during any given hour, 

Not knowing if hubby will have a hissy fit,

Having watched friends drift away,
Having lost contact with co-workers,
Watching hubby leave for work every day,
Watching my kid apply for college.

I find myself waiting. 

I am constantly waiting. 

Yet no one comes.
No one calls. 

Nothing is resolved.

 

I do things to pass the time. 

Rumbling around my four walls; 

I read,

I watch TV,

I surf the Internet.

Always waiting. 

Constantly in that agitated state. 

I wait some more.

Nerd Chicks Are Awesome!

http://www.myconfinedspace.com/2009/01/09/nerd-chicks/

So How Do You Feel?

Apart from this being a line from a song that I really detest, my shrink likes this question.  She asked me today "How to you feel about being sick?".  I couldn't give her an answer.  I've been thinking about this question on and off all afternoon.  I've come to the conclusion that I don't have a single answer.  It's not even that I have multiple answers but rather that the answer changes constantly.  It morphs daily, hourly even by the minute.  I can be scared, angry, frustrated, lonely, happy, pissed off, annoyed, nonchalant, guilty, worried, anxious, ambivalent and probably a dozen or so more that I don't remember or can't identify.  Right now I am ambivalent about it.  Ask me again in an hour or maybe tomorrow and I'll give you a totally different answer.

Ahhhhhhhh.........

I love this site!  Zenfully Delishious is site for papmering our battered chronic bodies.  I even love the layout.  It is so soothing.   Enjoy!

Will I Be Pretty?

Quote of the Day

"Be careful about reading health books.  You may die of a misprint."    - Mark Twain

Curiouser and curiouser

The B12 doses are helping tremendously.  I'm back on my feet again.  It is very odd.  Prior to the start of the treatment I was only sleeping 6 hours a day.  As soon as I started taking it I started sleeping 12 hours a day with several naps during the day.  It was like I was making up for all that lost sleep.  Now a week and a half later I am down to sleeping only 8-9 hours at night and most days I don't nap.  I am back to where I was in July.  Tired most of the time, easily fatigued.  Sleeping well most nights for a 'normal' amount of time.  I am also no longer nocturnal and actually get tired at 10 or 11 most nights.  Yeah!!

Food has been another weirdness.  When I started taking B12 I was starving.  Like I get the week before my period.  Always hungry.  Always wanting to eat.  Finally two days ago this stopped.  I am back to normal sized portions and not being starving all the time.  My appetite hasn't stabilized yet.  I don't get hungry so much as dizzy and nauseous and then I realize that I haven't eaten for hours and am having a gylcemic reaction.  I need to start paying more attention to the types of food and when I eat them to rebalance my system.  I'll figure this out soon.

As far as energy goes I have more than I did two weeks ago.  I actually made a simple dinner all by myself today.  However I was exhausted afterwards.  I did go to the market two days ago.  Good thing I only needed a few things.  I couldn't walk anymore after about 15-20 minutes.  I couldn't do my usual cruise up and down the isles.  Luckily my son was with me to drive us back home.   It sounds like not much but it is progress in the right direction.  I am please and curious what the days ahead will hold.

My Mood Today

My beautiful friends sings a beautiful song:

Duh!

Must have something to do with the massive B12 doses I'm on but I just had a huge HUGE realization: my husband's crankiness has nothing to do with me.  Nothing I do will get rid of it. 

Case in point: I just had the best day after a month of hell.  I showered on my own; got books out of the library; went out to lunch; drove my car; bought some English chocolate; had a nice dinner date with hubby; read a book; I'm in a great mood.   During our dinner date I held his hand, kissed him, winked at him, had some pleasant dinner conversation and generally had a nice date with him.

So at ten o'clock in the evening what is my hubby doing?  Pitching a hissy fit.  He is storming about having to go get the kid from school (this is after I offered to pick him up myself).  I asked if he wanted me to get him and I got some weird diatribe I couldn't follow.  I offered to keep him company for the trip but he started ranting "This always happens to me.  This is so typical.  I'll just take care of it myself like I always do." after I told him he would have to wait a few minutes for me to get ready.  Well, excuse me for having to poo.  You can't wait a few minutes??  The fact is he wanted to rant.  He had some pressing desire to get pissed off.  He needed to yell at the world and it has very little to do with me.  So I can stop feeling guilty for being sick.  I can stop getting upset when he pitches fits.  It isn't me.   IT'S NOT MY FAULT!  Whew!  I can stop blaming myself.  Now I just have to figure out a way to help him.

Fidget Bum

In England when a kid is fidgety they get called a 'fidget bum'.  That is me today.  I woke up this morning and for the first time in months felt like a real person.  My head was clear.  I was well rested.  I had some energy and I had a major case of cabin fever.  I have been stuck in my house for the last month only leaving for doctor appointments.  Even my brain is fidgety.  I can't seem to stay on any topic for more than a few seconds at a time.  So here are some things I managed to do today which for a well person might seem mundane but for me are a major accomplishment:

• I paced the kitchen floor while waiting for the water to boil for my morning tea.
• I went to the library, found four books and checked them out all by myself.
• Hubby and I went out on a dinner date.
• I walked two blocks to the restaurant without hanging on to hubby.
• I climbed in and out of his very high truck without assistance.
• I read a book.
• I drove to a small specialty store with my Mum so we could buy chocolate imported from England.
• I went to the airport to see my Mum off.
• I stood up for the entire duration of my afternoon shower.
• Watched TV while writing my blog at the same time.

Yeah me!

"The joy of life is made up of obscure and seemingly mundane victories that gives us our own small satisfactions.”    -Billy Joel

Whiplash

"Your mood swings are giving me whiplash." -Bella in Twilight

Usually my husband gives me whiplash.  I never know what mood he is going to be in and I can't predict the triggers for his hissy fits.  Today, however, it was my turn to give him whiplash.

I woke up depressed about our marriage.  I read too many web sites about how to figure out if your marriage is going under.  Of course I figured I was doomed and spent the night agonizing over it.  I lost sleep over it.  Woke up cranky and tired and silent.  Then I went to my chiropractor whom I haven't seen for about three weeks.  He adjusted all sorts of stuff in my neck and back and then did this weird energy clearing thing.  I immediately started to feel better.  We were laughing and joking around.  I went home in a much better mood.  Then of course came my afternoon crash and I slept through the show Mum and I were watching on TV.  When I woke up I was all better (mentally anyway).  Woohoo!  Sunny skies are here again!  Life is good!   Things will be okay! 

When I tucked my husband in this evening he commented on this transformation.  He said he can't handle me going through four seasons in one day.  It was all I could do not to laugh at him.  So I smiled, kissed him goodnight and tucked the blanket under his toes.  We'll make it.  It might take a bit of work but no one ever said marriage would be easy.  He is a good guy and he is worth the effort.

XMRV Lecture Notes from the NJCFS Conference

This is one of the best summaries on Dr. Judy Mikovits' lecture I have found to date.  For the original article, click here.  This blogger has posted summaries from other lectures from the same conference.  Sue Jackson also attended the conference and has posted notes in her blog.  The conference proceedings will be available on DVD in about six weeks.


"In the first part of the lecture Mikovits:
-drove quickly through the history of various published papers that establish the association of a family of gamma retroviruses with ME/CFS.
-went over familiar ground with the problems of the negative studies, and stated her arguments against contamination
-cited "greater sequence diversity than originally observed", stating that "Variation is our friend"
-twice cited Sandy Ruschetti's importance in this research, including a key role in isolating the virus,
-spoke of how hormones and inflammatory cytokines turns on the viruses
-speculated about reservoirs, where the virus hides, where it doesn't
-gave examples of teasing out XMRV with different testing devices.
-stated that "sample processing is everything",
-stated that the association of XMRV-related viruses is stronger in ME/CFS than in prostate cancer
-reiterated that the WPI is the only one who has isolated virus from ME/CFS specimens.
-talked about subgroup P
-indicated that X -variant and P-variant are two independent viruses
-found x and found p in individually cloned viruses
-stated that XMRV and its variants is not a mouse virus
-stated that this is not a recombination, but a new human retrovirus
In the second Part of the lecture she presented data on the XMRV work being done in UK. Along the way she mentioned:
-50 UK samples went to two independent labs, each tested multiple ways
-David Bell (recently retired) is working as a clinical consultant, presumably with the WPI
-ME/CFS is not a woman's disease
-Ruschetti cultured samples from Alter cohort and found x-variant in all of them
-found complete concordance between viral isolation and detection of antibody reactivity in UK plasma
-Lo's primers picked out negatives as positives
-Conclusion: found evidence of HMRV in >70% ME/CFS meeting CCC criteria
-1st generation testing will get better.
Finally Dr. Judy talked of XMRV-related virus in family and other illness
-presented Cheney's patient XMRV information
-showed family trees with illness association
-detection of XMRV in 16 of 17 families with neuroimmune illness
- "Methods matter!"
-HMRV research is in it infancy as much more research needs to be done."
Posted on CFS Patient Advocate Blog

Togetherness

"Chains do not hold a marriage together. It is threads, hundreds of tiny threads, which sew people together through the years."    --Simone Signoret

"I got gaps; you got gaps; we fill each other's gaps."    --Rocky

"Many marriages would be better if the husband and the wife clearly understood that they are on the same side."    --Zig Ziglar

"Real giving is when we give to our spouses what's important to them, whether we understand it, like it, agree with it, or not."    --Michele Weiner-Davis, "Divorce Busting"

"What counts in making a happy marriage is not so much how compatible you are, but how you deal with incompatibility."    --Leo Tolstoy

Marriage

What is it?  Basically some sort of agreement between two people.  From a civic point of view this agreement can involve anything.  The church's version is a sacred agreement with details that differ by religion.  The legal version is to protect the passage of property between entities.  When I agreed to get married twenty years ago, hubby and I made our own pact.  It was to be a marriage between two equals.  We would share all things in this life.  Everything split evenly down the middle.  Possessions, work, chores and financial responsibilities.  We would support each other and help each other along the difficult path of life.  We would be there for each other.

Well, I've broken that agreement.  I became very ill and can no longer fulfill my half of this deal.  I can't work.  I can't do chores.  I can't cook.  I can't drive the kid around.  I often can't listen to him bitch when he's had a bad day.

Hubby has had a bad three years.  He is angry.  It oozes out in weird ways that isn't intentional on his part.  He throws grand mal hissy fits on a regular basis.  While this anger isn't directed at me personally stuff is getting broken around the house.  I don't like this and I don't want to deal with it anymore.  It is toxic and isn't helping me heal.  I can't fix this since it is his issue but I can't tolerate this anymore.  In some ways I feel like I'm being punished for being sick.  However this might just be a perception on my part and not what is really going on.  I haven't sorted this out yet.  It is too complicated.

We are at a weird impasse.  Our agreement is broken and we haven't managed to renegotiate it yet.  I'm not even sure what I want out of our marriage.  I don't like the way it is (not) functioning right now.  We definitely need help and I'm going to look up a couple's councilor tomorrow.  This is beyond my abilities to fix.  I don't have enough insight into the weirdness that is occurring on a day to day basis to even have a constructive discussion with him.  We seem to have fallen into weird scripted discussions that repeat themselves on a regular basis that don't lead to any type of real resolution. 

What baffles me is how did this happen to us?  We used to be really good at talking with each other.   We used to talk through everything and come to a resolution that suited both of us.  We wouldn't have lasted this long if we hadn't been able to do this.  I was so proud of our ability to work things out.  Somehow, when I wasn't paying attention, we got out of the habit and we now have this odd uncommunicative form of discussion.  I call them dances because I can almost write the script out verbatim.  We have the dinner dance, the chore dance, the work dance, the finances dance, the illness dance.  I can't totally blame this on the illness.  This weird communication style crept up on us prior to me getting sick.  My illness has just increased the frequency, intensity and duration of these dances.  I don't like this.  I don't want to dance anymore.  I want to get back to having a real marriage to someone I can have a real discussion with. 

After 20 years I am almost past the illusion of people being truly equal partners.  It is more like you take turns being alpha and beta and you don't have to be alpha in all arenas at the same time.  Things morph constantly.  I think some where during our last three years of marriage things got frozen.  Things aren't fluid anymore.  We're stuck in a malfunctioning pattern and it needs to stop.  It isn't healthy for either of us and I'm not sure our marriage can survive this for very long.  I'm hoping for change.  I want to do things differently.  I want to fix things.  Make them better for both of us even if I'm not sure what I want.  I know I don't want this anymore.

Sorry this is so rambly but I had to do this as free flow thought.  My brain is too tired to function linearly right now.  I also wanted to write out several ideas that I'm struggling with before I lost them in my foggy memory. 

Day 4

Things are so weird and unpredictable.  I figured I'd be bouncing off the ceiling by now.  What has happened is not what I expected.  I'm tired.  Like sleepy tired.  Before the B12 I was sleeping about 6 hours each 24 hour cycle.  I spent most of the night up often going to bed at 4am and several times after dawn.  During the day instead of being tired my muscles would just quit working so I would have to lie down.  I would get the shakes if I pushed beyond the point I knew I should be resting and I would get oddly dizzy.  Not room spinning dizzy but not being able to tell which way is up when you're underwater dizzy.  I could no longer navigate a dark room and I often had to hold on to stuff or people when walking around a lighted room.

Today is day four of 1000mcg doses of B12.  My circadian rhythm is back on track.  I now get tired once it gets dark rather than when it gets light.  However, I am back to sleeping 11 hours at a shot and needing at least one nap during the afternoon.  The good news is that I'm no longer dizzy.  I can stand in the shower with my eyes closed and wash shampoo out of my hair without risking a concussion.  My thinking has cleared up considerably.  I managed to walk to the end of my road and come back.  But, I am back to being stupidly tired.  I just want to sleep all the time again.  I feel like I'm making up for the past month's worth of insomnia.

Don't get me wrong I'm totally happy with the improvement.  I can shower unsupervised.  I can make a simple meal.  I can walk around unassisted.  I just need to sleep.  A lot.

Cautiously Optimistic

I am now on day 2 of B12.  I am doing so much better.  I showered and dressed on my own and stood up for most of the shower.  My insomnia seems to be going away.  I went to bed at 12:30 last night instead of 3am.  I slept for 10 hours and then took a nap this afternoon and am tired now.  I helped make dinner and even sorted out my clothes in my closet.  Considering I was bedridden and needed help walking around the house and getting dressed this is a huge improvement.  I don't know how much of this is due to the vitamin.  I'm trying not to get too excited but I want to jump up and down.  I seem to be on the mend.  My head is clearing for the first time in weeks.  I should be able to read books again soon.  I keep trying to remind myself that this could be due to my resting rather than the vitamin; that I might plateau at any point; that this is not a cure but I'm so happy that I'm doing better.  I keep hoping that I will continue to improve.  Cross my fingers and toes!

Check, 1, 2, 3

Test results report
Three things showed up in my first round of blood work done at the infectious disease office: high sed rate, elevated CMV (a type of mono marker) and low B12 (240 pg/mL).

Now my sed rate has always been something of a mystery to my docs.  It is ALWAYS elevated.  This is nothing new and my old docs used to dismiss it out of hand as part of my osteoarthritis or the latest bruise I had acquired.   The ID doc didn't give me a number on this so I don't know if it significantly different now than before.  I told my regular doc about it so he is probably going through my old blood tests now to see if it trending up or down.

The CMV test while elevated doesn't differentiate between something or other that I can't remember.  Anyway it is significant enough that I need another blood test to see the difference between CMV IgG and CMV IgM.  What this means to me I've forgotten already.  I'll be reading up on it tonight.

I've been reading about B12 deficiency on Wikipedia.  Yes, I know, not the most reliable source but it is usually my starting point before I do more research on more reliable web sites: I often get good search terms from the Wikipedia articles so I get better hits off Google. I'll post more about B12 later after I've done some more research on it.  Suffice it to say they put me on 1000 mcg/day.  I took my first dose today so it is going to take a while before I start feeling the effects.  According to the ID doc, it will take four months or longer to build my blood levels of B12 back up to 'normal' levels.  I will have to have a B12 blood test again in four months to see how I'm doing.

The ID doc didn't want to comment on my CT scan until the final report was available.

The upshot of the whole thing is that the ID doc suspects that a majority of my symptoms are being caused by a B12 deficiency.  However, they don't know why it is so low.  They are thinking along the lines of malabsorption in the small intestines but this can have several causes including but not limited to Celiac or Whipple's disease (yes, I had to look that one up and yes it is rare).  They decided that they really wanted a second round of blood tests first before doing a small intestine biopsy for the other diseases.  So I donated another four vials of blood to the cause and I have to wait another three weeks for the test results but at least I get to try out the B12 supplements in the meantime.  I am so hoping this is going to be my magic bullet.  I will be over the moon happy if I suddenly start feeling better just because of a vitamin supplement.  I know this isn't the cure but at least I will be able to resume showering standing up.  And that will make me a very happy woman.

Whatever the results, I learned a huge thing during this visit.  My ID doc and I aren't speaking the same language.  What I have is weird and hard to describe.  We had the worst time trying to talk about my not being able to walk.  It isn't really muscle weakness but a weird combination of lack of energy and lack of spacial awareness.  If I close my eyes or I'm in a dark room then I seem to be floating in water and I can no longer tell which way is up.  I'm not dizzy per say but I'm definitely having trouble with up and down.  He kept asking me if I had 'gait disturbance' and I have no idea what that means.  I think I am going to have to get very specific when I describe my symptoms.  I can no longer use general but somewhat inaccurate terms such as dizzy or fatigued.  They just don't fit what is happening to me.  This was a huge breakthrough in communications.

Beauty and the Chronic Beast

BlogHer just started a beauty campaign to take back the definition of beauty from the fashion industry and make it our own again.  This got me thinking can we be beautiful and chronically ill at the same time?   After all here in the US we are supposed to be young, skinny and athletic; practically the antithesis of what happens when you have CFS.  I'm almost 50, a devoted sofa sloth, 230lbs and growing.  I'm not going to be in the swimsuit edition of Sport Illustrated in this lifetime or quite possibly the next.

Since becoming chronically ill I've gain weight.  And it isn't as simple as 10-15 of scale weight.  I lost muscle mass and therefore gained even more fat than the ten pounds the scale says I've put on.  It is easier to say that I can no longer fit in my "fat" clothes from when I was well.  I'm down to my stretchy yoga pants ladies!  Ugh.

I no longer am capable of shaving.  Face it I'm nearing 50.   For those of you who are younger us older gals start growing facial hair at an alarming rate.  If I don't shave daily I start to have a noticeable mustache and don't even mention my gorilla legs.  Right now I'm lucky if I manage to shampoo my hair and get soap on 80% of my body.  The act of shaving anything is currently way beyond my capacity to manage.

I often have to skip showers altogether because I just don't have the energy, like tonight.  I went shopping and helped prepare dinner instead of attending to my personal grooming.  It is amazing how fast my hair gets stringy.  I'm drooling over the new adds for waterless shampoo.  Next time I manage to get to a drug store I'm buying a case load of the stuff.  If I get desperate enough I'll get it through Amazon.  Yeah!  Now if I could only remember the name of the stuff....

I haven't had a haircut since early March.  I had such a cute short haircut at Christmas.  I loved that haircut.  Everyone complimented me on it.  Now my hair is down to my shoulders and constantly falling in my eyes, which drives me batty.  So now I do the old lady thing and pin it back with hairpins.  I no longer look young and hip.  My grey hair shows when I wear it pinned back like this.  My cute haircut somehow magically hid most of my grey.  Now I look like a chubby 60 year old instead of a hip 40 something.

So ladies is it possible to be sick and beautiful?  I think it is if you change the definition.  I still have my sense of humor on most days.  I'm still kind and considerate on most days.  Right now I don't really care what I look like as long as I can shower and have clean hair. 

My husband said the most oddly kind thing to me last night, "If you were an angry alcoholic and this sick I would leave you in a heartbeat.  But, you are kind so I'm going to stay."  I still feel a little weirded out by this statement but I keep going back to the fact that he just told me that I was so kind that he is willing to stick out all the ickyness of chronic illness and he didn't want to give me up.  That is kind of cool.  I guess he likes my inner beauty and that is the best kind because it can't be taken away by chronic illness.

All in All a Good Day

Finally!  Things seem to be getting a little better.  I'm toddling around the house again.  I took a shower today 100% unassisted.  I even managed to stand up to dry off and put my clothes on.  Yeah! 

I went for the scan this morning.  The techs freaked out about my allergy to the CT dye so they didn't use it.  Good for me; bad for the doc.  I got the preliminary results back.  While I have a cyst on one of my kidneys and some fibroids (which I already knew about) there is nothing serious going on inside of me, which is a mixed blessing.  I have nothing serious but that means they still don't know what is wrong with me.  Neither of those things would cause my symptoms.

I see the infectious disease specialist tomorrow morning so I am going to have to behave and go to bed at a reasonable hour tonight.  I have to be up at 6am for the drive into Boston.  Icky!!  I much prefer sleeping in until 10am.  I was never a morning person even when I was well.

My good mood has also made a reappearance.  I think the best thing I did for myself was cancel all of my appointments last week so I could sleep and rest.  I also think that seeing my shrink has brought me some relief in that I now have someone I can talk with in person about what I am going through.  While I find writing very therapeutic, talking helps tremendously as well.  I need someone with an outside perspective to ask me questions so I can find some answers.  I have also had a wonderful visit from my sister who left yesterday with much tears and my Mom who is still here with me.

Things are definitely getting a little better.

Test, Test, 1, 2, 3

Ok, so I'm an ubergeek and hubby is a sound engineer, hence the title.  To what does it refer?  My CT scan tomorrow.  Since my downturn has  been rather dramatic hubby started bugging my doc to find out my blood test results from the visit to the infectious disease doc several weeks ago.  Well, I don't have any normal or exotic infections but they both decided that a CT scan of my abdominal cavity was a good idea.  In the old days they would have just cut me open for a look see.  They have gotten a little more high tech of late.

What this means for me is two barium shakes and several doses of steroids.  I am one of those people that is highly allergic to CT scan dye.  I have only had one scan and as soon as they injected the dye my throat closed up and I had trouble breathing.  Luckily it went away very quickly before I really had time to panic.  I still felt terrible after the scan and told the tech.  She just looked at me and said "that is normal.  There is the door.   Take a left to the dressing rooms.  Your done."  Somehow I managed to drive myself home and when I still felt awful I called in sick to work and started hunting around on the web.  Of course everyone is trying to sell CT scans and not wig people out about the procedure so all I could find were sites claiming how safe CT scans are.  I must have called the hospital to get the name of the dye.  Once I had that, I looked it up on one of the drug sites and found the side effects which did include anaphylaxis.  I called the hospital back to report the incident to make sure that tech didn't toss anyone else out that was having an allergic reaction.  There was stunned silence on the other end of the phone.  No I wasn't going to sue the hospital. 

This incident occurred about ten years ago but due to the near death experience it pretty fresh in my memory.  Hence I'm a tad nervous about tomorrow.

Since they are scanning all of my innards and I have this nasty allergy, I have to start the drugs tonight.  I have a barium shake and prednisone dose to look forward to before bed.  Then another shake and prednisone dose in the morning in lue of breakfast.  Then a dose of benedryl.  Ugh.  No food.  No drink.  This is NOT going to be pleasant.  My doc purposely put off the scan until Tuesday.  He wanted me there when the A team was at the hospital rather than the C team that was in over the holiday weekend.  I'm concerned with the docs' haste.  What are they worried about that I have to have a CT scan so quickly?  If I didn't have the allergy to contend with they would have had me in there Saturday.  Ok, I'm getting a little freaked out.  I'm sure things will go well.  The hospital I'm using this time is very good.  They have a great reputation and I have had several surgeries there over the years and they have treated me very well.  They also have an excellent reputation so I know they will take care of me.  I'm just nervous.  I'm just a little freaked out.

A Decent Meal

I just finished a turkey sandwich.  Not an ordinary from the deli sliced turkey sandwich but the real left over turkey dinner kind with cranberry sauce.  Last night I had my first decent homemade meal in months.  A full out turkey dinner with everything; mashed potatoes, green beans, gravy, and stuffing.  Am I better you ask?  Am I cured?  Hell no.  My sister and mother drove six hours to visit me and I am LOVING it.  My husband swears he is going to not let her go home. 

My sister has turned into a domestic goddess since becoming a mom.  The first thing she did when she got here was clean out my fridge and take inventory.  My son then drove her to the market where she and my mom got busy buying groceries.  Since I haven't been shopping during the three weeks of my crash there is very little food in my house that hasn't degenerated into a bio experiment.  She then came home and we put together a simple grilled chicken dinner with salad.  (I'll post the recipe on Fast Foodie soon).  Then after dinner she did all of the dishes.  I could  kiss her.  My husband was over the moon happy.  The next day she made the turkey dinner.  It was AWESOME!  Tonight is roast pork.  I can hardly wait.

I dearly wish I lived closer to both of them.  I can not describe how awesome it is when someone shows up to help me.  I'm such a horrible introvert that I don't know people very well even though I've been in the same house for ten years now.  No one pops round with a casserole or to pick up some groceries for me.  In the last six months I've only had three people pop round for a quick hello.  If I wasn't an introvert the isolation alone would drive me bonkers.  Having company and some help is just such a gift.  I'm not sure how I can thank them enough.

Quote of the Day

"Well let's face it: I'm so good looking, even my bacteria are cute."  -Sleep Talkn' Man

Holiday Craft Project

I was cruising around the internet looking for ideas for making my own Christmas cards (you know to combat boredom since I am stuck at home) and found this.  It is so COOL and AWESOME I just had to share.  They are cigarette carton sized boxes that are filled with love notes.  The original was done for Mother's Day but it can easily be adapted for Christmas so start collecting neat bits and pieces to put in your cool box.

Mother's Day Box

Sample Contents

Click here for instructions with pdf templates.

Quote of the Day



Source



What's hard is simple.

What's natural comes hard.

Maybe you could show me how to let go,

Lower my gaurd,

Learn to be free.

Maybe if you whistle,

Whistle for me.

-Stephen Sondheim

Blood Work

Just heard from my doctor.  I don't have exotic or common infectious diseases.  Yeah!  However, there is a lot of unexplained inflammation in my body.  Next up full body CT scan.

I'm a bit nervous since the last time I was in one I had a bad reaction to the CT scan dye.  Hopefully they will pay better attention this time when I tell them I don't feel good during the scan.

You Know You Are Chronically Ill When...

• You have menus from at least ten different restaurants that will deliver to your house
• You take more pills than your grandma
• Your cat is angry at you for always taking the good spot on the couch
• You sleep regularly in at least two different spots in your house and one of them is not a bed
• Your infectious disease specialist is on speed dial
• You're on a first name basis with your primary doctor and chat with him/her regularly via email
• Your medical file is thicker than War and Peace
• Your pharmacist knows where you live (yes, mine makes deliveries)
• You not only know what the Krebs cycle is but which supplements will affect the various stages of it
• You fit the diagnostic criteria for both insomnia and narcolepsy
• You know lots of CFS jokes but can't remember them
• You show up to appointments either days early or days late at least once a month
• Your spot on the couch is surrounded by dirty dishes, dirty socks, granola bars, piles of books, a cordless phone/cellphone and every remote that you could possibly need
• Your husband hooks your TV up to the internet and gets you a wireless keyboard and mouse so you can surf the web from the couch
• You own your own shower stool
• You no longer know what day of the week it is nor care
• You no longer use a watch or an alarm clock
• You free range sleep (sleep anytime anywhere)
• You dearly wish they had cots in the waiting rooms of medical facilities
• You have to bring your own reading material to your doctors office because you have already read all of his magazines and next months issues haven't arrived yet
• All of your body hair has grown back in
• You start wearing your gym clothes to bed because all of your jammies are dirty and hey you need to put the gym clothes to good use
• All of your clothes are sorted into two piles on the floor of the bedroom; the clean pile and the dirty pile
• All of the clothes you wear look like you've slept in them and you probably have
• You haven't gone shoe shopping for over a year because you still haven't broken in the last pair you bought
• You've killed off at least 60% of your houseplants
• Dust bunnies do the tumbleweed thing across the floor every time there is a strong breeze in the room
• You will be doing this year's Christmas shopping exclusively via the internet and catalogs

Things Are Just Going Downhill

This has probably been one of the worst weeks since I got sick back in May.  I have never been so weak.  My big outing today was walking through each room in the first floor of my house.    Yeah!  I managed to get my butt off the couch for five minutes.  My husband, bless his heart, went to the drug store and got me a shower stool so I could shower.  I was complaining all day about how bad I smell and the fact I can't stand up long enough to shower.  It was great showering but I ended up needing a three hour nap afterwards to recover from it. 

I've canceled every appointment I had this week.  I haven't been outside the house since last Friday.  I only get off the couch for dinner and bathroom breaks.  Oddly enough I'm not sleeping much.   I just have no muscle strength.  My husband has had to help me walk from room to room more than once and has had to pick me up off the floor twice now.  This is not good.  He is starting to bug my doctor daily for news from the infectious disease specialist I saw a few weeks back.  I'm supposed to see my shrink Thursday but I'm not sure if I'll make it to her office.  It is at the top of a flight of stairs and I don't think there is an elevator in the building.  Could be a problem.  Ahhh, leading the chronic life.

My Last Few Weeks: A Picture Essay

My First bad week I was like...

Fuseli's The Nightmare

Then the depression lifted but I still felt like....

From Hyperbole and a Half

When I was not in bed I was watching....

Yup.  I watched all five seasons in about a week and a half and then discovered this...

Basically.....

 

WeHeartIt

However my husband is like....   and I'm like......



WeHeartIt



What I really need is one of these for my living room...



http://dvice.com/archives/2007/03/wave_chaise_refines_art_of_bei.php

 So here is my To Do List for the foreseeable future...



WeHeartIt

 So far so good!

Flares

Is it just me or is everyone I know in the blogsphere flaring at the same time??  What is going on?  Some weird planetary alignment that I don't know about?

Off In LaLa Land

It has been a rough few weeks.  I can't believe how bad my physical symptoms have become.  I am now only functional an hour at a time and if I am lucky it happens twice in one day instead of once.  I'm not that tired but my muscles keep quitting on me.  I get the shakes.  I get cold.  I can't even sit up.

Today takes the cake though.  In an act of defiance and desperation I really really wanted to go shopping at Whole Foods to pick up GF food supplies and shampoo both of which I had run out of since I've been too sick to shop properly for three weeks now.  So I peel myself off the couch where I had been reading for the last two hours.  I should have recovered enough from breakfast so that I could shower but I knew when I stood up that I was pushing the envelope.  I didn't care.  I wanted to at least smell good.  I was tired of having grubby hair.  This was my third day without a shower.  So off I went.  I did my usual thing of propping myself up against the wall while I washed.  Kept my elbow on the wall while I shampooed my hair so I wouldn't fall over when I closed my eyes.  The little energy I had drained out of my muscles before I was done rinsing the conditioner out.  I shut the water off and was stuck propped in the corner of the shower.  The towel seem a mile away.  I yelled for my husband to no avail.  I kept looking at the towel and wondering if I could make it to the other side of the tub without cracking my head open.  I lost it and cried.  Why in hell can't I take a simple shower?  I just want to not be grubby anymore.  I want to be able to go out and buy food for myself and get the organic shampoo that I like.

I decided that if I leaned on the tub edge with both hands I might survive exiting the tub without a loss of consciousness.  I managed to slowly drag one foot out of the tub, shift my weight and then drag my second foot out.  I seriously consider sitting on the floor but I know that once down there I have little hope of getting up again.  I swing my ass around and sit unceremoniously down on the toilet seat.  Thank God I have a small bathroom.  I am now freezing cold, dripping wet and shaking.  I reach for the towel and wrap it around me.  I notice blood drops everywhere.  Great I'm bleeding.  I wipe my face on the towel and more blood appears.  I have a nosebleed.  Just peachy.  I call for hubby over and over again.  He must not be able to hear me.  I don't have the strength to yell very loudly.  I'm shaking and cold.  After a few more attempts I say screw it and descend to the floor.  At least I'm close to the ground if I totally loose it and end up collapsing.  I try yelling again and again.  Still no answer.  I'm tired.  I surrender and lie down on the floor.  Now I'm totally freezing.  The fan is drawing in fresh air and it is flowing over my very wet body.  I have a damp towel draped over me which helps a little and I just close my eyes.  If I just rest long enough I should get some function back and be able to move again.   After a while I decide to try sitting up again which I manage to do.  Then I hear the tell tale sign of movement in the adjacent room.  I yell again.  No answer.  One more time and I hear the exasperated sound of my husband's voice at the bathroom door.  He comes in to find me in a heap on the floor.  Suddenly he is worried.  I can't talk properly I don't have the energy to explain what happened.  He keeps asking what is wrong and all I can tell him is that I need to lie down.  He is holding me up so I don't have to worry about keeling over again.  He combs my hair and with a Herculean effort on my part he helps me to stand up.  I have never ever had the shakes that badly.   He asks me if I'm cold which I am but the shakes are really from weakness.  I can't move on my own.  I'm totally spent.  He props me up between the wall and the sink and runs off for my bathrobe mistakenly thinking that will stop me from shaking so much.  He manages to get the robe on me and takes my arms and assists me to my bed.  He brings over some clothes and all I can manage is "screw the underwear put the blanket over me and give me a pillow".  Not very polite but I'm not up for a big speech right now.  He tucks me in bed, gives me a kiss and leaves to pick up the kid and go to the market for some dinner.  So much for me getting some nice shampoo or Udi's bread.  I just lie there.  I'm too spent to even hurt much.  I can't even keep my eyes open.  Since I'm not tired I don't sleep.  I just lie there in the shuttered half light of my room listening to the sounds of my neighborhood.  It is four in the afternoon.  I have been up for exactly three hours.  I've been on the couch for two of them.  I didn't even have enough juice in the battery to take a short shower.  WTF??  This is ridiculous!! 

I have no explanation for this crash.  I have no explanation for its severity.  I would understand if I had a cold, my period or that I had gone ice skating.  But no!  I haven't done a thing.  In fact I've been pretty lazy this past three weeks since I've been recovering from the mental breakdown I had.  I should be getting better not worse.  What the hell?

I did have a nice surprise though.  My husband was so concerned he contacted my doc and insisted that he do something.  My doc is going to call Tufts tomorrow and check on the status of my blood tests and the recommendations they have for me.  My official appointment isn't for another two weeks.   I hope he manages to talk with someone over there.  It would be great to finally have a diagnosis and maybe an action plan.  Then again this all could be wishful thinking on my part. 

What ever I have SUCKS!!

Inner Peace

Just got this via email so it has probably been floating around the Internet for a while.  I also can't identify the author.

Inner Peace
author unknown

If you can start the day without caffeine,
If you can always be cheerful, ignoring aches and pains,
If you can resist complaining and boring people with your troubles,
If you can eat the same food every day and be grateful for it,
If you can understand when your loved ones are too busy to give you any time,
If you can take criticism and blame without resentment ,
If you can conquer tension without medical help,
If you can relax without liquor,
If you can sleep without the aid of drugs,
Then You Are Probably......
The Family Dog!