Christmas Decorating and Weight Loss

Let's get the weight issue out of the way first.  I went to Weight Watchers this morning and lost 4 pounds.  Keep in mind that I did not weigh in the week before, I played hooky.  That brings my total weight loss for 12 weeks to 12 pounds.  1 pound a week is great... but I need to do it faster, and without this up and down.  I am now at 212.2 pounds.  (I hate admitting that)  I am not sure what my BMI is at this moment, but my first goal to reach is break the 200 mark.  It will be interesting to see how this new "calorie" diet works compared to WW. 

Bill and I went grocery shopping after I got home and I stocked up on veggies and lean ground turkey and chicken breasts and fish. 
I came home and cut up all the veggies and put some in storage containers for snacks and Cauliflower, Broccoli, Brussel Sprouts and Cranberry's in baggies to cook with.

I also bought myself some good decaf coffee beans and some fat free Cafe Vienna international coffee to add to it for something special and comforting in the evenings.  Plus, Weight Watchers Fudge Bars for zero fat and 60  calories.  I am hitting this weight issue with a new dedication.  This is not a diet like other people go on.  It's a life saving measure.  I know without surgery or transplant I wouldn't have much of a life.  I would be home bound eventually and my heart would continue to get worse.

I NEED this weight loss.  It is not for vanity it's for life.  However, my memory can't even place when I had 30 BMI.  LOL  So, it should be fun to see.

I am going to start going to Britt's house 3 or 4 times a week to ride her stationary bike while she works out.  She said it will help her too to keep a scheduled exercise program as well.  She is doing some program on DVDs that would kill me. 

I mentioned last night that I had decorated our tree and house for Christmas.  I love Christmas and if it was left up to me I would leave them up all year.  Bill jokingly says that any month ending in "ber" is fair game for Christmas to begin around our house.  LoL

Living Room

Living Room

Even Christmas in the Kitchen :)

Dining Room

To me there is nothing better than to sit surrounded by Christmas.  I come by this honestly... Mom would decorate so beautifully every year for the holidays.  She used to make fun of me for putting my stuff up so early.  I have passed this onto Brittney as well.  She actually had her tree up before me this year. 

It's time to get to Britt's now.  I just wanted to share my weight loss with you.  Yippee!  And, post the pics of Christmas.

**Just a ending note.  We are back from Britt's.  I rode the bike for 46 1/2 minutes.  My highest pulse rate was 156, but after resting and slowing things down it stayed about 130.  I can already feel it.  When I stood up from the bike my legs were like standing on spaghetti noodles.  LoL  Back again tomorrow and Thursday.  I will do it Mon, Tue, Wed and Thurs.  I'll keep track of my progress here. 

My Pulmonologists appointment and some news

There have been a few times that being so "forth coming" about this process has been embarrassing, or shameful or uncomfortable for me to write. 

I went to my pulmonologist's appointment today.  He had heard from Seattle and they sent a list of requirements and tests they wanted me to have prior to visiting them.

The tests included but not limited to ...

An Echocardiogram
A High Resolution Ct Scan of my chest
A complete Pulmonary Function Test
A Blood Gas test without O2

He said there would probably be more blood work, but those tests are easily scheduled.
So, on the 23rd (in 8 days) I am scheduled to go @ 10 for the echo cardiogram and ct scan, then once I am finished there remove oxygen and wait 30 minutes then go to his office for the Pulmonary function test and the blood gas test.

He said I meet all requirements for LVRS and Transplant EXCEPT FOR ONE AREA ... MY WEIGHT!!! 
He as politely as he could said he will take it upon himself to be "that" doctor that I will hate, and just tell me.... I am overweight.  I need to lose weight in order to save myself.  I sat there shaking my head agreeing with everything he said.

I have been going to Weight Watchers and losing slowly.  Sometimes losing, sometimes gaining, always wanting to have big losses but going up and down.  I have not eaten fast food, I have watched my fat intake and low calories.  But what I hadn't done is exercise. 

He told me today that even with my heart condition (which he will forward concerns about to my primary care doctor) I need to get up and move.  He said even if I can only walk 15 minutes, then rest in between and walk 4 times a day for 15 minutes.  I get it, I understand. 
For people without this disease it would appear ridiculous that I cannot walk for periods of time.  It seems ridiculous to me. 

He said that in order to have the LVRS they would like me at a BMI of 32% and for Transplant at 32-30%. 

So, he said they will want to see me.  Go over all my tests with me and get familiar with my case as well as letting me get familiar with them and how they do things.  He said he doubts they would do the surgery until I had significant weight loss.

So, I give up and give in.  I will continue to go to Weight Watchers weekly and weigh in.  The support system there is good for me.  But tonight Brittney brought me over this calorie counting and calorie burning system she has been using.  I wanted to get one but they are 200$ and I didn't want to spend the money.
She put it on my arm and told me she ordered me one and paid for 6 months worth of online support to go with it.  When I get mine I will give this one back to her.
They are called the bodybugg (version 3) calorie management system.  It uses body temp to keep track of calories burned.  Then you plug it in to the computer at the end of each day and add what you have eaten and it tells you calories burned verses calories eaten.
You can set your own goals and it will calculate, and give you your daily calorie allowance.

I will keep you posted on how it works. 

Being over weight to me is one thing.  But being SO overweight that I do not qualify for surgery is something shameful. 

I go to Weight Watchers tomorrow and I am hoping to see a loss.  I didn't go last week so this weigh in will be for 2 weeks.

I am so tired tonight, but I will get on tomorrow and post some pictures of Christmas.  I got energetic and put up our tree and decorated the house for Christmas. 

I was thinking today about this time last year.  Bill and Layla and I going to feed our ducks and walking around canister free.  We walked or got outside nearly everyday. 

What a difference a year makes.  I often wonder what would I be like today had I not quit smoking 522 days ago?  I can't imagine putting anything in my lungs, even cold air will make me panic.  I look back at the holidays last year and I want that me back.  Of course then I thought I was damaged beyond repair ... little did I know of the downward slide that would take place.  I can see the evil-ness of this disease.  It slowly almost unknowingly steals your breath, energy and independence. 

I can remember last November being able to take walks, dress without being out of breath, clean house (if I didn't use harsh smelling cleaning products), walking from room to room, taking a shower without the need for oxygen. 

I am not sure when it happened, I didn't notice waking up one day and not being able to do something, but it happened.

Now when I shower I lose my breath, when I get dressed I am breathless and exhausted by the time I'm done.  Cleaning house now takes me all day just to vacuum and dust ... a chore that used to take me an hour.  I can no longer walk for any distance or period of time.  Strangely though I can walk pushing a shopping cart.  I think that is because of my oxygen canister being in my purse and being so heavy to lug around.

I can only imagine what I would be like in another year?  With some luck I will have this lung volume reduction surgery and it will go smoothly and I will be able to see an improvement.  That would be nice. 

Suddenly I am finding it impossible to keep my eyes opened.  I guess it's time to go take meds and go to bed. 
Night.........

I have to add another blog tonight.  Since I started this journey I have met so many warm and giving people.  They are what give me strength and hope when I am afraid and want to quit trying. 

I joined a quit smoking site Become an Ex and met some of the most wonderful people there.  I consider many of them friends even though we have never met in person.  They will never quite know how much their friendship and loyalty have helped me these last 15 months. 

I also joined groups on face book.  Copd sites and Transplant sites.  There I share many things with people who are going through the same things I am.  We understand each other and no one second guess us when we speak of being scared and breathless, or having pains that no one else can see. 

On one of these sites I met a woman who came to me and requested friendship.  She was genuine and gentle and caring.  She had a heart and double lung transplant 15 years ago and would ease my fears with her strength.  She was married and loved her husband.  They had one son who was everything to her. 
She passed away yesterday afternoon from complications due to organ rejection..  Bless her soul. 

It just made me want to come here and let my friends know how much you've meant to me. 

I can not go through this journey alone.  My husband and my daughter are wonderful and give me strength.  But in life for one reason or another I have few good friends who live near us to confide in ... not counting my daughter.

This just caught me off guard and scared me.  I guess it's easy for me to sit at my computer and type blogs and spill my heart onto a computer screen.  But in real life it's not so easy to deal daily with it all. 

Today was a exhausting day and I did nothing.  That to me is frustrating.  I am off to bed, but wanted to give thanks and much love to all of you who have stood beside me and helped me along this last year.  I want you to know I value your friendship and I never take it for granted.

Goodnight

I woke up this morning and got a cup of coffee and sat down in my chair to watch the news, about 3 hours later I woke up and couldn't believe I had fallen back asleep and for so long.  Bill snuck out and while I was sleeping he put up Christmas lights on the house and fence. 
Good timing, it started sprinkling snow this afternoon, not enough to count, just enough to make it blustery cold.

I painted a few little miniature people scene's for Brittney's Christmas village and played on the computer for a while, then went in and laid down and slept another 2 hours.  I am still ready to call it a night and go to bed and it's only 7:30.  Talk about a waisted day!

I went outside a few times this afternoon because Bill wanted my opinion about lights or something and as soon as I hit the cold air... my breath went away.  I had forgotten from last winter about the dry cold air.  This year it's much much worse.  There was nothing there to breath in.
I will definitely have to keep scarves around to wrap around my face while I am out and until I get into a building.  It was scary today how quickly it took my breath away.

I get tired of having special needs.  I get tired of being tired.  I get tired of a lot of things these days.  In the last week I have step on my own cannula ripping it from my face SO many times I can't count them all.  It hurts.  I get so pissed that a few times I have sailed my cannula and tubing across the room.  I feel like a little kid having a tantrum and half expect to hear my mom say "do you feel better now?"  LoL  It just is so annoying dragging this thing around all day.  I feel like a dog tethered to a post.  I have a certain diameter I can go in and then I reach the end of my rope (so to speak). 

I am down on myself because I have blown my diet this week.  I am going to pass on Weight Watchers tomorrow.  I know if I go I will have a gain, and I would rather try and make up for it this week and see what the damage is next week.  I feel like a total loser for this.  How can I take control of anything in my life if I can't even control my food intake? 

It sounds like just a down day today.  Maybe I should just call it a night and see if tomorrow can be better.

By Definition Lung Volume Reduction Surgery

Lung Volume Reduction Surgery



Many people who suffer with emphysema have portions of the lung which are more affected than others. This finding led to the development of a surgical approach to treat emphysema. Lung volume reduction surgery (LVRS) is a procedure which removes approximately 20-35% of the poorly functioning, space occupying lung tissue from each lung. By reducing the lung size, the remaining lung and surrounding muscles (intercostals and diaphragm) are able to work more efficiently. This makes breathing easier and helps patients achieve greater quality of life.


Good Candidates


It is very important that this operation is only offered to people who are likely to benefit from the procedure with the lowest risk of complications. A good candidate for LVRS is someone who has stopped smoking for at least 4 months and has disabling emphysema despite complete compliance with optimum medical therapy. The patient must be able to participate in a pulmonary rehabilitation program prior to and after surgery. Any other medical conditions that the candidate may have must be well controlled and must not present unacceptable risks for complications from the procedure. Most importantly, the patient must have a pattern of emphysema that is amenable to surgical management. This means that there are space occupying, poorly functioning areas of the lung which can be removed to improve lung function. Imaging studies including chest x-ray, CAT scan, and lung perfusion studies are done to determine this.


The National Emphysema Treatment Trial (NETT) was a prospective, randomized, multicenter trial which compared the results of LVRS to medical therapy which showed that there were 3 groups of patients that tend to benefit from LVRS. The following groups of patients are candidates for LVRS:


Group 1: Patients with predominantly upper lobe emphysema and low exercise capacity. These patients have improved survival and functional outcomes after LVRS compared to medical therapy.


Group 2: Patients with predominantly upper lobe emphysema and high exercise capacity. These patients have improved functional outcomes after LVRS but no difference in survival compared to medical therapy.


Group 3: Patients with non-upper lobe emphysema and low exercise capacity. These patients have improved survival after LVRS but no difference in survival compared to medical therapy.


Poor Candidates


The NETT also identified patients who are unlikely to benefit from LVRS and have high risk for death after the procedure. The following groups of patients are not candidates for LVRS:


Patients with non-upper lobe emphysema and high exercise capacity.


Patients with extremely poor pulmonary function (FEV1 20% or less than predicted) and either homogenous distribution of emphysema on CT scan or extremely poor carbon monoxide diffusing capacity (DLCO 20% or less than predicted).


What to Expect
To optimize exercise capacity and improve early postoperative recovery, patients must participate in a 6 to 10 week pulmonary rehabilitation program prior to surgery. The operation requires general anesthesia and can be done through either a breast bone incision or smaller chest incisions using video surgery. A special surgical stapler is used to remove the diseased lung tissue and seal the remaining lung from leaking blood and air. Immediately after the procedure patients are awakened from the general anesthetic and allowed to breath on their own. Pain medicine is given through an epidural catheter to help control postoperative discomfort. Drainage tubes are left in the chest to drain any excess air or fluid from the chest after surgery. These are removed once the air and fluid leakage stops. Physical therapy is reinstituted early during the recovery phase during the hospitalization. Patients are discharged from the hospital once the patient is mobile, tolerating a regular diet and drainage tubes have been removed.




Anticipated Benefits


Relief of shortness of breath


Improved lung function


Increased energy level and physical mobility


Improved ability to function at normal daily activities


May decrease need for supplemental oxygen


Potential Complications


There are significant risks associated with LVRS because of the poor baseline lung function. The major risks associated with this procedure are:


Prolonged air leakage is the most common complication after LVRS. Approximately 40% of patients will have this problem. Some patients will actually go home with a chest drain in place for a few days to help manage this.


Pneumonia (15%) can occur in emphysema patients, especially in patients who have a history of recurrent bouts


Bleeding (2-5%)


Stroke (<1%)


Heart attack (1%)


Death: The chance of dying after LVRS is approximately 3-8%
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The above is from USC
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The below is from U of W
 
What is the Washington University experience?



Modern lung volume reduction surgery was pioneered by Washington University School of Medicine surgeons, who performed the first procedure at Barnes-Jewish Hospital in 1993. Since that time, the surgeons have completed hundreds of lung reduction surgeries, with outcomes showing marked improvement in patients’ ability to breathe more easily.


The success of the lung volume reduction surgery program is made possible by the skilled surgeons, pulmonologists, radiologists, anesthesiologists, respiratory therapists and nurses who all have extensive experience working with lung and lung transplant patients. This multidisciplinary approach assures the highest standard of care.


What are the benefits of Lung Volume Reduction Surgery?


The following outcomes can be expected as the result of surgery:
•relieves shortness of breath


•increases energy level and physical mobility


•improves ability to function at work, housework, social life and hobbies


•provides an alternative for patients not suited for lung transplant and for those who have not responded to medication, respiratory care or other medical therapy


•creates a dramatic improvement in lung function (45 -55% six months following surgery)

•may decrease need for supplemental oxygen

I Have News ~ :) ~ :) ~

The phone rang this afternoon and the voice on the other end told me she had heard from the transplant center.  Kellie... They are interested in your lungs.  They want to order a battery of tests which I will begin to schedule Monday morning and once the tests are received and looked at by them they will CALL ME FOR SURGERY.

Not Transplant.  They don't want to transplant me at this time due to my age. :)  Instead they think I may be a good candidate for Lung V0lume Reduction Surgery.  I will post some information after this blog for those who are interested in what it is and what they do.

As I was listening to my Pulmonologist's nurse it was like I was in a fog, dreamland.  Someone heard my prayers.  Someone could feel the fear I had about transplant.  Someone finally listened and acted correctly.

I couldn't be happier.  For quite a while tonight I wasn't sure if I was actually happy.  I didn't feel happy.  I didn't feel lighter.  I had repeated over and over to myself that I would have a transplant and I would be prepared and be fine.  Every night when I went to bed I said a prayer asking to make it to transplant and be better after.  So, hearing I wasn't to have the surgery I wasn't sure what to do or how to act??? 
Finally it hit me.  The reality of this hit me.  Yes, the University of Washington had heard of me, and yes they are interested.  Only this time I feel like I am starting with a second chance. 

People come through these surgeries and do well for years.  Maybe eventually I will need a transplant... But this girl doesn't get one yet!!  I have a second chance.  I feel like I can relax.  I almost feel that knot in my neck release for the first time in 17 months. 

I no longer have to worry about relocating to Seattle.  I will have to make some trips back and forth for follow ups.  From what I hear that makes all the difference in the world.  If nothing else comes from this it is that ..... I am a darned good patient.  I listen to instructions and follow them to a tee. 

I am hoping that if I get my breathing capacity better then these problems with my heart may go away.  These problems walking or swimming may go away.  I know this is not a cure.  I know I will still have limitations, but I should breath much better.  I shouldn't have anymore of those anxiety ridden out of breath moments anymore. 

What a nice start to a new year this would be.
I can go to bed tonight and dream the dreams of those free of stress. :) 

I feel bad about last nights post.  It is the first time I have ever spoke about  Bill's drinking "in public".  I feel like I am disrespecting him by doing so, but at the same time it is so nice to get it out.

Our entire marriage he has drank and most of  the time it's just fine.  However, the times it's "not" fine then it's ugly.  We have had THOSE times lately.  I am sure it's his way of dealing with stress.  Hell, I would love to deal with things by hiding in a bottle for the evening.  It's just that he gets argumentative and loud and I end up avoiding anything and going to bed or removing anyone from the situation.  When we have visitors I am on edge all the time because I don't know what may happen or when he may decide to strike out.  He is never physical, but says hateful  things sometimes.

Yes... I live with an alcoholic.  I have my entire life.  Both parents liked to drink and did so every day to some extent, and then I married a drinker. 

I want you to know, I love him.  He takes very good care of me.   He has stepped up and has taken over those things which I can't do anymore.  One little imperfection.

O.k.  That is all I can allow myself to talk about him and his issues.  I feel like I dishonored him or something.  There are just moments that I want things to be about me.  There are times that I need peace and no stress.  There are moments that I feel I shouldn't have to worry about having family and friends around me in case he may be in a mood.  You know... I shouldn't feel guilty about needing this time to be about me. 
All I have asked is for there to be no fighting, arguing or being pissy around me for a while. 

I have nights where I am awake for hours just thinking of all that could go wrong with the transplant.  Will Brittney and Bill be O.K.?  Will they be able to deal with my belongings fairly or will Bill change like my step father did?  I have nights where I just cry, for no apparent reason.  I have times when I go to bed that I feel so alone and lonely.  Times seem to suck lately.

I thank god for my anti-depressants.  I know without them I would be a heap curled up in a ball not able to deal with life.  I actually most days feel not depressed at all.  There are just periods of helplessness.
I don't talk to much to Britt about my fears and my health.  Yes, she goes to doctor appointments with me, but I do my best to put on a happy face for her.  She is entitled to have a happy life and not worry about my mental state.  I find myself getting quite good at covering everything up.  I can be cordial and have a moment .... go into the bathroom and have a little cry and come out smiling.  Does that make me crazy???  My life lately seems like I am living with a split personality.

The holidays are approaching and I usually go all out.  There have been years that my tree is up before Halloween... always up before Thanksgiving.  This year I want to hold off.  Somewhere in the back of my head I am thinking just as I get all of our decorations out and put up I will get a call to go to Seattle.  Wishful thinking?  God, some days I am mentally just not wanting to cope.  Today must be one of them.

I am so tired, I haven't slept well in a long time.  Last night was particularly dreadful.  I had cramps in the sides of my legs and feet.  Cramps that walking wouldn't even get rid of.  I would rub them and rub them as hard as I could and still they were cramping.  I am so hoping tonight is better.

I blew my diet tonight.  It was like a train wreck.  Of course I over ate on non fat foods, but on Weight Watchers at my weight I am allowed 25 points.... by the time I finished tonight I reached 40.  That will most likely kill my next weigh in.  I'll do better. Please... let me do better.

I want to be able to do with food like I did with cigarettes, only you need to eat food to survive, so cold turkey is not an option.  Turkey bacon, fat free chocolate pudding, Mandarin oranges, apples... I could not satisfy myself.  Ughhh.................. Tomorrow is another day.

Sorry for the self indulgent pity party.

There are moments of grace, when clarity and wisdom, love and understanding, guidance and insight, are brought to you and through you. These moments of grace will change your life forever, and often, the lives of others as well.  (Neale Donald Walsch)


I might as well get this right out of the way.  On these days I feel like a criminal being brought in to court to listen to his punishment. 
Yesterday I went to Weight Watchers and .............  Gained 1.6 pounds.  So again I am riding the roller coaster of weight loss.  That brings my total weight loss to 8 pounds. 

I am now forced to have a serious discussion with myself and remember that this weight loss is not to fit into a new pair of jeans, or to look good in a swimming suit.  This weight loss is as important as anything I have done in my life.  It will make a huge difference to the doctors who will decide if I am a proper candidate for transplant.  And, it will help me breath easier in the mean time. 

So, here I am re-newing my weight loss pledge.  Just reading my blogs in this area of my life I feel like a huge failure.  I won't be so hard on myself, and I understand that I am not the only one who struggles with weight.  It's just that me continuing to gain weight is a bad reflection on my goal to be as healthy as I am for transplant.  It is like watching a person with lung cancer chain smoking.

O.K.   Enough of that.

Bill and I have been talking (well mostly me talking and forcing Bill to listen) about just me relocating to Washington, and he and Britt can come up once a month or so to visit.  I will be tied to that hospital, or at least a small radius around it until my name is called for transplant.... We shouldn't have to put everything we own in storage and rent our house, or even sell it.  This will be a temporary thing.  Yes, even after transplant I will be required to hang around for a few months and I will then need some care and support.  We can cross that bridge when we come to it. 
It would just be so easy for me to have a small apartment without having to worry about our dogs or having enough room for all of our stuff.
I just get irritated when I try and talk with Bill about our choices, and he seems more worried about the dogs than for me to get up there and get settled.  I know he doesn't feel that way.  I know sometimes I am overly  sensitive... but we are at the oil and water stage again.  Nothing he says gets through to me and vise-versa.
I think a lot of it has to do with his drinking.  He gets stressed and hides in Screwdrivers.  I tell him that must be nice to hide like that, only it just leaves me here alone to deal with all of this.  It doesn't seem to faze him, right back at drinking the next night.
Just so you know... I grew up with drinkers around me and I didn't like it.  If someone could have one or two drinks and act normal that's one thing.  But with my mom and Bill (those closest to me) one too many drinks and I can tell.  And, they get so enraged when I bring up slowing down or quitting drinking. 

I think dealing with the unknown about this transplant and just dealing daily with the Copd is enough.  I feel like I shouldn't have to deal with his drinking and moods right now.  It's been a rough subject for us our entire marriage.  I am getting tired, I just want to not be apprehensive about his moods or actions and just deal with me for the first time ever.

I never in my life have lived alone.  I always either had roommates or was married.  But honestly, having myself to worry about for a while might be nice.  I know Bill will be fine without me, he can keep busy easily.  Britt and Layla I will miss.  But we can have phone calls, and they can come visit when they can.  

The part about this that is the most frustrating is... while I am on the list I cannot leave my radius.  So, if someone were to get sick and I wanted to be with them, I would have to be passed over for any organ that would come in during the time I was gone.  So... It's very important for me to be there and stay there. 

There is a transplant coordinator that stays with me throughout the transplant and follows me after. 

You know..... I just want to know what is coming.  I want to know where I will be and with whom?  I want to know if my insurance will be a problem and if I will need additional funding and if so where will it come from? 

Patience!!  Breath in ..... and out.  Repeat as needed.  This is what I mean.... I am not a good "these things take time" kind of person. 

This shows the gravity of how transplant effects a family.  I am always there for my daughter and granddaughter when they need me.  Not that Britt isn't fully capable of taking care of herself and Layla, but it's nice to have a grandma there for much needed breaks.  And, frankly I depend on Britt far more than most mothers do their daughters.  We are very close and consider each other best friends.  I talk to her WAY too much about Bill's drinking, but I have no other friends nearby to chat with.

I always feel like that is a dirty little family secret.  You know the kind.... everybody knows about it, but it is never "talked about". 
Bill is a good man.  He will drop anything to help out someone in need.  He volunteers his time helping so many people, he is a good guy. 
It's just that vodka that makes him unreasonable and one you can't reason with or talk to.

Enough talking about Bill.  I feel terrible doing it, but it helps to see what other stress I have.

I went to my surgeon today to get the "all clear" on my thyroid surgery.  He said all pathology was good.  He said he took quite a bit of my thyroid out and that I may possibly need thyroid medication, but maybe not.  Just for me to watch for symptoms.  I am not sure what these are, but will talk to my doctor about them. 

That's good news to me and I am fine with the possibility of needing a pill.  I'd rather that than the alternative.

O.K.  Meds are kicking in and I want to put this day behind me.  I wish for sweet and peaceful dreams and uninterrupted sleep. 

Thinking of a friend

Today was an exhausting day.  This was the day to update all my SSI information and keep them in the "loop" as far as possibly moving out of the state for transplant.  It almost takes an act of congress for my benefits to be forwarded to Washington State on a Temp basis.  I still have heard nothing about the transplant. 

This is difficult for me.  Knowing that this is in my future, but not knowing ANY details about journey.  I don't even know if I should put my Christmas tree up?  I am sure yes, but I keep going back to what my pulmonologist said... "I want you in Seattle before winter".  That makes me think at least for my initial consultation and exams it will be soon.  But then I talk with my Pulm.'s nurse and she says be patient this could take a while. 
So... where does that leave me?  I am in limbo.  I can do limbo, but it just makes this whole process seem like it's not happening.

I am trying to tie up all these loose ends.  I am going through closets cleaning and throwing stuff out, organizing other things and cleaning.  Making sure all my necessary paperwork is labeled CLEARLY in the filing cabinet for Bill and Brittney to get to if needed.  I am making notes and leaving them on my "desktop" on the computer.  Things like... where to find my advanced directive, my will, my bills that still need paid, my passwords for face book, pogo, credit cards... etc.  These things will have to be taken care of at some point.  I have also written personal letters to Bill, Britt and Layla to have after I am gone.  All this does not mean I am thinking negative because I am not.  I have to be realistic though and I would rather be prepared for the worse and not need any of it, than to go through what we did when mom passed away.  That was UGLY.

Bill and I went to the grocery store today.  NEVER again will I go to the store on the 1st any more!!  Rude people everywhere.  Anyway.. after our shopping was done we stopped by our favorite taco wagon on the way home and out walking our attorney.  He is adorable and the nicest most genuine man ever!  He keeps reminding me to finish writing my will and mail it to him and he will make it top priority and get it to the point where I can meet him at our bank to have it notarized. 

One of my friends I met on face book through the COPD group and I were chatting last night about how cute the trick-or-treaters were.  Tonight her husband left a message on her page saying she is in the critical care unit of the hospital with acute heart and lung failure.  She had been telling me she was coughing phlegm up, and I warned her about pneumonia. 

This is why I am so afraid of germs anymore.  I continue to knock on wood everyday and thank the big guy ^ up there for keeping me healthy.  I have not had one cold since I quit smoking.  That last cold I had in April and May of 09 scared me.  And, had I not been diagnosed and quit smoking in June I would have probably been in about the same shape as my friend.  I remember like it was yesterday.  We were at Brittney's house when she lived in Lebanon and Abe was there visiting for a couple days and I had to sleep on the couch almost sitting up in order to breath without having coughing attacks.  I don't think that I had ever been that sick or scared.

So, I protect myself as well as I can.  When we shop I carry disinfectant wipes to use on the shopping carts.  I soak all the veggies when we get home before I put them away.  I use cloths to wipe down all canned food we buy.  You just never know what is lurking.  Mom would be giggling at me.  She bleached EVERYTHING, even us kids at times.  She used more purex than most people use laundry soap. 

I have had some dizzy spells that has Bill worried.  They never last long, but I had one yesterday that almost took me off my feet.  I also have had some coordination problems.  I usually am not a klutz, but lately I just don't have my footing.  I am not sure if this is Copd related or not, but worth mentioning.

At the store today I found fresh Brussels Sprouts.  Have you ever seen them grow?  Bill was amazed.  LOL

We bought this awesome bottle of wine, I thought if nothing else we can use it for Thanksgiving or Christmas dinner.  I love the bottle.  LOL  That is no way to buy wine... I know I know!  ;)

My 87 Pages of recipe book I wrote and had printed.  I love it, and will make 2 more for my brothers only I will change the cover for them so it's not so "girly"

And to put a adorable face on the end to my night.... Layla.  She is growing so fast!

Saturdays with Layla

I woke up this morning feeling like I slept great.  I went to the DVR and turned on Sling Blade.  I know it's kind of a dark movie...  but I love it, and I love Billy Bob Thorton's performance.  I forget it's him and that's the sign of a wonderful actor. 

I woke Bill up finally around 10:00 or 10:30 and we went over to Britts for a little visit.  We of course brought Layla home with us to spend the night.  She is busy watching the Great Pumpkin Charlie Brown for the 4th time.  I almost have parts of it memorized.

I left her and Bill at home and went to Michael's craft store.  I needed to buy pinking shears to cut out circles of fabric to top my canned stuff with for Christmas gifts.  Then I found the cutest labels (Martha Stewart line of course) and some gold ribbon to tag each jar with.  They should be pretty in baskets. 
While I was there I couldn't help but look at all the Christmas stuff they have out.  I may have to go back when I have some time and do a little pre Christmas decorating shopping.  I love that store!  I tell my family if on any occasion they do not know what to buy for me, get me a gift card to Michael's and I will be pleased as punch.

I left Michael's and went grocery shopping.  Just to pick up a few things.  Mostly veggies.  They are so hard to keep fresh without buying almost every 3 or 4 days.  While I was walking around I realized my oxygen had run out.  I think it ran out while I was at Michael's and I just didn't realize it. 
When I left the house I grabbed a scarf to wear around my throat to cover my incision.  And, at around the same time I noticed the O2 I started getting pain in my throat.  The scarf was covering my incision and because it was cashmere it made my throat warm and moist and my incision began to burn.

By the time I got home I was a mess.  The incision is fine, just more sore than it had been for a couple days.  My lungs were burning from being without O2 and I was tired.  As I began to unload the car, I stopped ... walked in the house and asked Bill to do it for me.  I barely could carry my purse with empty O2 canister in it.  It was this moment that I could have taken one of those elusive naps I spoke of yesterday.  LoL 

Instead I helped unload groceries.  Tried to hide my Michael's treasures from Layla because anytime she sees scissors and stickers or ribbon she thinks its arts and craft time ... and this grandma didn't even have it in her to hide the things let alone be crafty. 

I forgot to mention ...  While at Brittney's house I went in and got on her scale.  I don't own one.  Her scale said I was at 218, which if correct means I gained 6 pounds in the last 2 weeks.  GOD I HOPE NOT!!!  Like I said yesterday .... This is one thing I would rather not be so honest about.  I will keep on doing what I am doing and go to weigh in on Tuesday and pray that it's not as bad as I think it might be. 

I am so irritated with myself.  I really am taking this healthy business to heart.  I know how important it is for me to get smaller to have a better chance at a successful transplant ... yet I keep gaining weight.  It's almost as bad as smoking with emphysema.  And, did I mention I am paying each week to gain weight.  Doesn't make much sense does it?? 

I am going to have to find some way to add exercise to my daily activity.  I will remind bill again that I want to start walking.  I am kind of afraid to do it on my own ... only because when I get out of breath ... I am vulnerable and have small anxiety attacks until I can get back in a breathing rhythm again, and it's nice to have him or Britt there to remind me I'll be O.K. and to just relax.  It's easy to get riled up and the intensity of the attack gets worse and worse until I force myself to slow down and take deep meaningful breaths.  It's hard to panic and remain calm.  LOL 

I am getting to that magic sleep time now, and there is a little girl all snuggled down in my bed waiting for her grandma to join her.  She said that if she went to bed early tonight then Halloween will get here faster.  So goodnight, see you on Halloween. :)

Life is what we make it

I am done with my thyroid, just to have my follow up appointment on the 3rd ... then that can be behind me. 
I already had my breast issues solved.
I have my heart problem under control.
My depression is being treated and seems to be under control.

I think I am on the mend.  It's onward and upward to transplant.  Or, to the pulmonologist the 15th where I can find out what if anything has been done regarding starting the process of transplant.

Don't misunderstand me.  I know full well this will be a long process and there will be many steps I will have to take.  No skipping ahead either.  It's a very thorough and complete process and it's like that for a reason.  They can leave nothing unturned.  I know and am prepared for waiting. 
Pffttt!  Listen to me... "prepared to wait"... who am I kidding?  LoL  I will pledge to do my best to have patience and let the process take me along for the ride instead of me pushing. 

I am going to ask of my Pulmonologists' nurse ... to call me or email me once a month to let me know if there is any progress.  It will save my nerves and her being bothered by me doing my best not to call 2 or 3 times a month.  One email shouldn't hurt either one of us.  I'll let you know what she says.

I have come home from the hospital having this thyroid surgery feeling new.  Maybe a new outlook?  I dunno.  My surgery was quick.  My incision is great, and fairly painless.  I am still in the 72 hour window and have no need for the pain meds.  I of course won't keep them here, I will take them to the doctor or flush them.  I keep 2 or 3 just in case I ever need them, but will not keep bottles of pain meds around.  And, believe me with each new procedure or trip to the doctor these days I get new pain meds.  Some very strong.  I just do not like to have them around.  I have heard too many stories of friends and friends of friends and even family stealing meds.  If I don't have them around... they can't get into the wrong hands.

I feel lighter.  I feel like now once again I can just concentrate on my Copd and to me that's easier than worrying about all these other medical issues.  Something to focus on.  Being healthy, staying healthy, avoiding colds/flu.  Watching big crowds in stores for germs.  Using more sanitizing gel that I ever thought was possible.  I am back on the diet.  I took 2 days off to baby or pamper myself after surgery.  Cheeseburgers and healthy baked fries and all things salty.  Today.. I am back on WW. 
Next Tuesday will be 2 weeks since I last weighed in.   I think my last weight loss was 1.6 pounds.  I would like this one to be better.  I don't know how it will go.  I haven't had bad days, I haven't pigged out on anything, so I should be good. 

You know, it's one thing to diet and have ups and downs each week.  It's another thing to be accountable to a public blog about my successes and failures.  And, there have been failures.  I need to keep remembering the ultimate goal.  The "T" word.  I need to be at a average weight for my height and that is going to be a considerable weight loss.

I told Bill it feels nice to just be a Copd sufferer.  I know what to expect, what to watch for.  I can tell good days and when bad ones are coming.  Once in a while a bad day or period will sneak up on me, but if I listen to my body closely I can tell what's coming.

Right now it's feeling relieved to have the hospital behind me.  To have normal Doctor appointments and every 3 months the pulmonologist visit.  I don't feel so damaged.  There for a while I was used goods, damaged material.  I am coming back from that. 
My hair is still straight and lifeless.  I still have some dark circles under my eyes.  I still have a cannula around my face. 
But, I can color my hair ... And, I can wear make up to hide dark circles.
I can try and be better about napping and sleeping.  When I am tired, sleep... how easy is that?  As it turns out... not so easy.  I am not a very good napper.

I talked to a woman today who is struggling with Copd.  Her family is not supportive and I can't imagine how hard that would make things.  She seemed focused on the bad.  I suppose I was to in the beginning.  Obsessed with "what stage" you're in?  Or, what is your FEV1 level?  Or, what is "life expectancy"?  I tried to tell her to take these moments and LIVE.  Enjoy life.  Look for small things to make you smile, like your grandchild's face, the sun shining through white fluffy clouds, the smell of fall air... anything.  You can find something each day to smile about.  If you are struggling with depression talk to your doctor and find a treatment that works for you.  When I want to get a push forward I go back to the beginning of this blog and read.  I was this woman I spoke to today.  I obsessed with the dark side of Copd.  I couldn't get past it and I waisted so much precious time.  Time I could have been laughing and doing things with my family.  Instead I pushed them away.  I wanted to be alone with this illness. 

Well, when you have loved ones being alone is impossible.  This is a family affair, like it or not.  So, take each day you draw breath and LIVE.  The definition of it may differ day to day or month to month but you can always find something to live for.

I won't waist anymore time dwelling on what might be.  My future is unknown... I can live with that.

On the mend

On the 25th I had surgery on my thyroid.  I went in at 9:00 like scheduled.  Surgery was supposed to be at 10:30.  As I was waiting for 10:30 to roll around they came in and said there had been an emergency and my surgery wouldn't begin until 1:30.  Well, that's fine however I was STARVING because I hadn't had anything to eat or drink since 8:00 the night before, and they wouldn't allow me to get up and move about.  I was in a hospital gown and had a IV started so they wanted me to lay there.  Since my back surgery years ago I have a big problem laying in one spot for any length of time before my back begins to hurt and my restless leg thing begins to bother me.  So, those last 2 hours prior to going in for surgery were terrible.  Bill and Britt got to wait with me.  I kept telling them they could leave and come back after my surgery was over but they are just as stubborn as I am and so they stayed.

Surgery was fairly quick, I think it was only an hour and a half.  He did not have to remove my thyroid, just the nodules and he said he did some scraping of a few areas just to make sure he didn't leave anything behind.  He said pathology came back clear on the nodules but he didn't like the looks of things.  I will make an appointment with him today and go in for a follow up in about 10 days.  I was home yesterday by about 3:00 in the afternoon and for the most part went to bed. 

Here is how it looked this morning.............

After surgery it hurt pretty bad.  Mostly muscular it seemed, and when I would try and raise up out of bed and strain those muscles.  I got sick the night after surgery.  I think it was from the anesthesia.  So, I was on a liquid diet after that.  Finally yesterday afternoon right before they released me to come home I ate a turkey sandwich and some soup.

Today I am not nearly as sore.  I still cannot turn my head very well, and my voice sounds like Bea Arthur (Dorothy on the golden girls, or Maude).  It is tender when I swallow.  I expect this only to last a few days.  The voice and throat.  All in all, it went smooth.

He said he left the thyroid and just took the nodules out.  Then scraped a few areas.  He actually said he "was not kind" to a few places in my throat.  He said there were suspicious looking areas that he "took care of". 

Layla came to see me the first night, and while there lost her first tooth while chewing gum.  It became quite an event and she ended up having her tooth carried home in a urine specimen container (new of course!).  She told her mom she wanted to go right home and to bed so the tooth fairy would come.   LOL  She said she would always remember losing her tooth the same day grandma got her throat cut.  LoL!!!  She is so darned cute!

I started to get congestion in my chest the morning after surgery.  I did my best to cough it out, but coughing with my throat sore didn't work very well.   Last night when I went to bed I noticed again when I laid down that my chest would begin to get phlegm in it.  Today I have coughed (ouch) and nothing is coming up, and it doesn't seem bad ... but anytime my chest rattles makes me nervous. 
I am thinking if I still have the feeling of something in my chest tomorrow I may call my Primary Care Dr. and ask her if I should possibly get a series of steroids and antibiotics?  I just would hate to get a chest infection now.  I have done so well since I quit smoking about not getting a chest cold, or pneumonia.  There was only one time I started running a little fever with green mucous in my nose that they doctor told me ... Anytime you feel like you are getting Anything respiratory to call them for antibiotics and steroids. 

So, I was going to blog about this before, then got side tracked, then had surgery and forgot.  A couple blogs ago I got a strange message from an anonymous person.  It made me think I was whining, or stating incorrect facts or something?  Maybe I am just being overly sensitive... it just wasn't my usual comments, and almost personal or something.  It's the first time any one's comments ever bothered me or made me question myself ... Just left me with an odd feeling.

Weight loss and Surgery

I went this morning to talk to my surgeon regarding my thyroid.  He said that twice now cells and fluid have been removed and have tested normal.  However, the size and shape of the nodules (2) leaves him and the radiologist to conclude the nodules need to be removed.  So... Monday morning the 25th I will have surgery around 10:30 a.m..  I will stay Monday night and come home Tuesday. 
I had a feeling that this was not going to be something that could be watched the next years.  I actually told him, "if there is any doubt then lets remove anything, because if anything could go wrong it has this year, so let's eliminate any surprises and do what you feel needs to be done".

I forgot, also yesterday was my Weight Watchers weigh in.  I lost 1.6 pounds bringing my total weight loss to 9.4 pounds.  Far from what I expected.  I am hoping things will settle down with my health issues and Bill and I can start walking again.  Even if I "stroll" while Bill walks.  I just need to move.  With the holidays coming and cold weather comfort food cravings showing up, it won't be easy.  But I have to be determined.  If I have moments of failure, I have to make myself get back on track.  I need to have a quiet moment to sit down and make a monthly weight loss goal for myself.  Then I can tell week by week how I will do. 

getting my house in order

Today I decided to get done a few things that had been sitting around.  For instance ... my Advanced Directive is all filled out and witnessed, however I needed to make copies and get it sent to my big brother.  Bill and Brittney will be my advocates, but I needed a third just in case.  I made them wallet cards and laminated them so they can have it with them just in case.  It tells the location of the advanced directive and who has copies. 

Of course half way through making copies of the thing I ran out of ink, so off to Staples I went.  Then as I was coming home it struck me I had been putting off writing my will.  After what happened to Mom and her things and her estate I want to make sure Brittney and Layla are taken care of, and my things go where I want them to go.  Brittney will have the say who gets what.  I want her to pick out one thing for each of my step daughters and one of her friends who is like a daughter to me.  And then the rest is hers to do with what she wants. 
Anyway, when I got home I called one of our dearest friends who is an attorney to ask him advice on how legal things will be if I just write it up and have my signature notarized?  He is such a doll ... he gave me an outline to follow and told me to write up my wishes and mail it to him.  Once he receives it he will make it his top priority to write it up in legal lingo and then call me to go with him to the bank to have it witnessed and notarized, then he'll make the necessary copies and keep one for himself and if there is a issue with the estate then Britt is to call him for help. 

What a huge weight that is lifted off of me.  Not that I think Bill would intentionally be mean or unfair to Brittney, but he has an exaggerated idea of how important his daughters are to me.  I have tried to tell him that they have their own mother and when the time comes they will get her things.  That my things belong to Brittney and Layla, and it will be up to Brittney how generous or not she wants to be to her step sisters. 

So, that's what I had been doing all afternoon.  Then I remembered that on Friday last week the surgeon who did the biopsy on my thyroid was supposed to call me, so I called his office.  His nurse told me she had planned to call me today to set up an appointment to go in and talk to the doctor.  He wants to go over my results with me.  Can I say how much I HATE THAT!  I just got a sinking feeling and have been trying to fight it every since.  Anyway... I have an appointment for Wednesday morning @ 9:30 to go chat. 

Tomorrow is my weigh in, and I am hoping it goes well.  I think I have done well again this week, but I have been surprised before.  I still have constipation.  I have taken 4 laxatives in 2 days and NADA.  What a terrible thing to write about.  LoL  Sorry ... but when you're trying to lose weight this is not helping.  Besides being uncomfortable and feeling bloated!  Ugh  I really miss just having Copd.  I know I keep saying that, but it's true.  I knew what to expect.  I knew what was coming. 

I have slept almost 12 hours a day this last week.  If I am not napping in my chair then I sleep way too long at night.  I just feel like I am dragging.  I am not sure if this is thyroid, heart or oxygen?  Or probably all of the above. 
When I wake up in the morning and step out of bed it is SO painful to walk.  My feet feel twice their size (they aren't of course) and it feels like I have a round ball on the ball of my foot that burns and hurts.  It even makes me limp for the first hour or so I am awake and slowly goes away. 
My feet hurt most the time anyway lately.  This I am not sure why?  

I am finding myself day dreaming about what needs to be taken care of before transplant and a temporary move if needed.  So...... I have been sorting, cleaning, and throwing away.  It started when I went to look for my winter clothes and couldn't find and finally did in a closet in the guest room.  I would have sworn I packed them away last spring. 

I am going room by room sorting, organizing and throwing so much away.  If the need happens to pack up our things and rent this house I want it to be a easy as possible.  And, if that need doesn't happen, well then I still organized.  I think of going through moms things.  She was so organized.  There wasn't one messy drawer or closet.  That's what I want Britt to find.  Not a bunch of mess to go through.  I know I am talking like something is going to happen to me.  It's just a faze I am going through.  It makes me feel like a load is lifted to know Britt will have an easier time. 

I think they call it "getting your house in order".  Well, mine hopefully will be room by room. 

I am so tired

I have been telling you my hair went straight. It is getting thin and lifeless. I don't know what is causing it and the doctors don't seem to care. I feel so frumpy anyway, I didn't need my hair to go wacky on me too.

I am finished canning for the year. I may give away my canning supplies just in case I ever think of doing it again! LOL Standing in the kitchen for 8+ hours every day just is too hard on me anymore. And, once you start there really is no stopping until it's all done. I plan to make baskets for our friends again (I do every year) only this year I think will be sauces and salsa and garlic, maybe some fancy chips to go with it and a gift card to our local butcher or something.

I usually spend days in the kitchen in the weeks prior to Christmas making cookies, fudge and candy's for everyone. This year however Britt is here and has a much nicer and roomier kitchen than I do, so I may still do it with her assistance.

Wouldn't it be nice to have some word on a transplant before then?!

There is really nothing new. Life with copd goes on. I can tell a slight change in my breathing ability with the onset of cold weather. I can only imagine how actual winter will feel?

I am hoping, really hoping that tomorrow I will hear from the surgeon about my biopsy. It will have been 11 days.
I took my meds early tonight, I am hoping they kick in and I can just go to sleep. I am finding every night I go to bed earlier and earlier. I have even resorted to taking naps during the day, about a half hour or so. I just feel exhausted!
Tuesday is my next WW weigh in. I have been watching Everything this week so I should see a loss. I also have been taking laxative every other day. It is helping, but not as much as I think it should. I'll let you know how Tuesday goes, and if I hear anything from the surgeon. Off to bed now.

Can Patience be learned?

I went to Weight Watchers on Tuesday and ..... Gained .8 pounds.  I don't know how?  I ate only small portions, I drank water, I ate vegetables, I didn't indulge.  How frustrating!  The only thing (big thing) I can think of is I have been constipated since being put on my heart medication.  I have been eating very high fiber, even taking fiber pills and nothing.  I went to the pharmacist and she suggested a laxative for me, which I have taken twice with No results.  So, Tuesday afternoon and again this morning I took laxative pills that Bill bought me.  Generic over the counter, run of the mill laxatives and they are working.  I will continue to take them every other day.  I will not be one of those who lose weight with laxatives, but I will not be one to suffer either.  I will do better with my weight loss.

I have renewed my commitment and REMEMBERED my reason to lose weight steadily and healthily and as rapid as possible.  I finally get it.  To get a lung transplant they match the lung size to body size.  Of course the smaller I am the greater my chances of getting a lung from a bigger group.  The lungs must be able to accommodate and be a vital part of the body they are going into.  If the body is too big for the lungs to handle you have failure, you have rejection.  It is much better to place too big of lungs into a smaller body than vice-versa.  So... It's losing I go. 

I thought about it and thought about it and for my own peace of mind I called my pulmonologist's nurse.  She has handled me most visits, except where explanation or bad news was to be given.  She is a doll.  When she returned my call I first asked for renewal prescriptions for Spiriva and Advair, and she said she would fax them in.  Then I gently asked if she had any information on the transplant.  She said that I need patience, that this will take some time.  So, remembering what my doctor told me that he wants me to be seen before winter I will call again in a few weeks, and then I will just ask her to have patience with me and to keep me posted on ANY progress, even just drop me a note, or leave me a message or shoot me any email. 
I don't think that is being too pushy.  I heard the word transplant over a month ago and have not heard of any progress.  I will be patient, but I expect a few little answers every once in a while. 

Hanging around waiting is fine, if they tell me it will take months.  But that is not what the Dr. said.  He said "by winter".  It's October.  I can do the hanging out with Copd/Emphysema thing.  I have that down to a science now.  I have a few new symptoms to report.   I am definitely having pain sometimes pretty intense in my right lung.  It is manageable right now with what pain meds I have the worse time seems to be when I lay down.  So, at night when I go to bed I raise up with pillows.  I feel like the princess and the pea.  I sometimes am afraid I will roll off the pillows and onto the floor!  LoL
Also, I am developing a small but annoying rattle when I breath.  I can't hear it during the day but at night when it's quiet I hear it, drives me crazy sometimes.

I called yesterday 1 week after my biopsy to find out any information.  Nada.  I really am not "one of those" who are pushy or needy or annoying.  I try so hard to just wait for news.  But, it seems they go weeks and weeks I nothing.  This thyroid issue has been going on since June/July and I still have no answers.  So... I'll wait.
It would just be nice to be able to check this off the list.  It would be nice to find out why my hair suddenly went straight as a board?  It would be nice to know what is making my hair fall out by the handfuls?  Why I have such bad headaches?  Why I have a lump in my throat sometimes, then other times not?  I think if I was walking down the street of a strange town and walked by my brothers, they would not recognize me.  I always had "big" curly hair.  Always.  No matter what I did to it, it would end up big and fuzzy, or at least extremely curly. 

I went to the Optometrists Tuesday.  He wrote me a new prescription and said that it is normal for people suffering with Oxygen saturation problems.  Not only is it effecting everything else, it is aiding in my eyesight getting worse.

Can you tell I am frustrated?  I am trying so hard not to be.  I would love nothing better than to get up every morning, untangle my O2 tubing from covers and sheets and try not to trip over it while I put the bottoms on to my pajamas and wander out to get coffee, and be able to just sit down and watch the news without beginning to think who might I hear from today?  What phone call can come in today that may or may not be bad news, that may or may not mean I can begin to think about transplant without being told to be patient?  I just want to live with my Copd or get on with things. 
This thyroid issue in limbo is one thing.  The transplant is another.  I feel like I am leasing my life, like it's not really mine.  That I have no control, and at a whim someone can pull a string and in a flash my life could change forever.  Having brief moments like that is one thing... living daily like that I am not sure I can do.  Oh... I have to do it.  There is no option.  I have to come up with a way to balance daily life, and what lies in my future that is totally out of my control???  It's very easy for people to say... "don't dwell on it", "what will be, will be", "you can't control your future".  Everything else I have heard over and over again... and they are just words.  It doesn't change anything. 

I picked a fight with Bill tonight.  Just because I was frustrated.  That poor man needs a get away.  He didn't sign up for this, I know that's what "you do" when you love someone is put up with their moods, or illness.  It's what you're "supposed to do", I am not sure I would be strong enough to put up with me and my ever changing moods, not to mention all the new "duties" he now has that I can no longer do.  Ugh  Anyway, I need to find a way to let him know how much I appreciate him. 

I am turning into the "crazy canning" lady.  First it was plum sauce, then rose hips, then different plum sauce, now it's salsa.  I think this is my 2nd batch.  I have SO many tomatoes left (which reminds me to go look for a spaghetti sauce canning recipe) that I'd better do something with them quick.  I also am making pickled garlic and canning it.  It will be mostly a gift for Britt for Christmas.  It is better than it sounds.  Once pickled it actually is fairly mild tasting.

I am off to bed now.  I wish for myself a better tomorrow.  I wish for myself more patience and strength to get through the day.

I am having those depression moments again.  I am doing my best to talk myself out of it.  I am trying to keep busy, looking ahead to fall and the holidays.  I have been canning ... Salsa, plum sauce and rose hip catsup.  After months of talking about it I finally finished my cookbook and actually have it here to hold it in my hands.  I stenciled the bathroom and bought new curtains for it.  We have had Layla spend the night every Friday, and she always keeps me moving. 
But... I still have that nagging feeling that is weighing down my shoulders and makes it hard to find joy. 

I get so irritated at myself when I start feeling like this.  I really don't have it so bad.  There are plenty who are going through much worse than I am.  I had this pain in my right lung that would come and go.  It has been constant now the last 3 months or so.  So much so that at times breathing feels like I am pushing a hot knife into my chest.  I haven't talked about my emphysema much lately.  It's just a given that I have the disease and all that comes with it.  And, I knew it was only a matter of time before some of the more painful side effects started.  I can't start complaining now.  I know there are much worse times ahead.  So, I may come here and right about how bad I feel, but I can't dwell on it.
It's like early in the diagnoses, I spent so much time feeling sorry for myself and being angry that I waisted quality time.  Time that could have been spent going and seeing things, small things.. like wandering through markets, going to a movie, going for a drive and have lunch along the way.  Just little things that let us get out of the house and see something new.

That will be a goal of mine.  I suppose it's the same goal I have had since last year about this time. 

My 2nd biopsy

Yesterday afternoon I had my 2nd thyroid biopsy.  This time the surgeon did it and this time he took cells from both nodules.  I had more discomfort afterwards, but the procedure went much smoother.  Really I suppose it's minimal discomfort.  My throat inside felt scratchy and outside felt like I was strangled.  LoL  I also have this new reaction to bandages.  Every inch of where the 2 bandages were are burned.  As a matter of fact that is my biggest pain today.  So, I would say all in all it went very well.  He told me as soon as he gets the pathology back he will call me.  I liked him. 

I still haven't heard anything from my Pulmonologist or his nurse regarding the transplant.  She was to call me when there was news.  I am not going to be calling them every week, but the 26th of this month will be a month since I was told, so I will call then.  And, once a month thereafter.  That isn't bothering them too much is it?  I am trying my best to have patience and to not dwell on the "transplant" word.  So far I think I have done pretty well.  I am keeping busy with trying to lose weight, getting my house ready for fall, and looking forward to a optometry appointment the 12th... after which I am hoping with new glasses I will be able to go back to my bead work.  That will give me something to occupy my time and take my mind off food, sickness and transplant.
I have probably 10 pounds of beads (not an exaggerating) that have been set aside, and when Mom passed away I brought hers home.  She had just as many as I did.  It was a joy of ours to shop for them.  We would find all kinds of out of the way bead stores.  God, I miss her so much. 

My cookbook arrived and I am very pleased with it.  I think it will make nice gifts for my brothers, and I will get one for Brittney too. 

Tuesday's WW's weigh in

I was dreading weighing in today.  I thought last week I had watched what went into my mouth and was surprised that I gained 3.4 pounds.  So, today I squinted when I got on the scale afraid of what I might see.  I lost 3.6 pounds.  So, actually I lost what I had gained the two weeks prior plus lost .2 pounds.  I'll take it.  That brings my total to 8.6 pounds in all.  Many many more to go.  Baby steps.

Yesterday I decided to stencil our bathroom.  I used to be so crafty all the time and hadn't done one thing since Mom passed away.  It felt nice to accomplish something again.  It was nothing intricate or even difficult, but I like how it looks.  I painted it red soon after I was diagnosed.  Bill said it just looks like rage.  LOL  I happen to like it in there, it always makes my skin look like it's glowing, and my red eyes look a little brighter. :)

Today I am sore.  I am not used to being on tippy toes on the step ladder.  And, stenciling is "pounding" with an almost dry brush on a surface... so my right arm feels like Popeye the Sailor mans'.  lol

I was so tired today.  I had so many things planned to do.  I ended up coming home from WW and going to bed for a couple hours.  I still am just exhausted, not sure why?  It could be the change in seasons.  It seems it all changed in one day.  My poor tomatoes I have left out there are shivering.  I suppose I should bring them in and hang them, but I am hoping to give them the rest of this week.
Bill bought me some more canning jars today, only a dozen pint jars.  I wanted to use some of these tomatoes, and it looks like I will have just enough to make a decent batch of Salsa and can it so we have fresh salsa all winter.  Bill uses it in his chili too.

The nurse called me this morning and asked me if I wanted to have Valium for before the procedure and pain meds for after.  I told her no, I thought I could do just fine.  It is uncomfortable but not so bad.
I think I may have changed my mind though, and will call her in the morning and ask her to call in a small prescription just in case.  I really don't like taking pain meds and do so only if I have to.  I am remembering last time and I was uncomfortable that day, at least until the following day.  Then sore for a few days after.  Just kind of ache-y.

Oh my gosh, I know it's not even 8:00, but I think I am going to call it an early night. 

I am checking in.  Lungs are still giving me issues.  Bill and I were shopping for a new T.V. (more on that later. lol) and I actually ran out of air, even with my O2 on.  Bill kept walking not realizing I had a problem and was surprised to see me not behind him.  It took me about 30 seconds to get a deep enough breath to keep me from having an anxiety attack to go along with it.  I really work on relaxing when that happens.  I have learned from experience that when I am anxious breathing is harder.  It was odd anyway and I felt it was note-worthy.  I was alright after I could get a few good breaths into me, but for those 30 seconds I kept thinking... OMG I am going to be on the floor of this store having Bill give me CPR.  LOL  I was more worried about being embarrassed than anything else.  Stupid me!

So, 2 Christmas's ago Bill and I bought ourselves a 42" T.V..  We figured we watched enough of it, that would make a good present for the 2 of us.  About 2 weeks ago we were watching a movie and the T.V. just went blank.  We sat there for a few minutes thinking the dog must have hit the remote or something.  Then went to check our other T.V.'s and they were fine.  So, we took it in to the local T.V. repair shop.  Of course we had a ONE YEAR warranty on it, so that wouldn't help us.  After about 9 days the repair shop called and said some "board" had a power surge and it blew the entire thing.  Not to worry though... They could get a new "something" board and fix it for about 400.00.  LOL  We only paid 500 for the thing new.  So forget it! 
So yesterday we went T.V. shopping.  We ended up finding a sale on them, and of course the sale ended yesterday.  We weren't planning on actually buying one for a couple weeks until we finished some projects in the living room... shampooing carpets (needing to move everything out), and Bill is redoing our brick fireplace, which means lots of brick dust.
We ended up asking them to hold it for us.  We bought a 50" one this time (holly cow... like anyone needs a T.V. that big!) and can leave it there until we are ready to go pick it up. 

I finally finished my cookbook.  I think by the time I was done it was 82 pages.  I tried to put the link here ... but can't.  So, anyone who is interested send me your email address and I can send you to the site.  My email address is... usedtobewagg@charter.net
I ordered just one book first.  I want to make sure it's what I think it is before I order more for the family.  I will be getting one for Brittney and each of my brothers.  I think if the rest of the family wants one, they can get in touch with me and order their own.  The best part about this site is, you can design your own cover, and then pick only the pages you want.  Of course the fewer the pages the less $$ it is. 
My book will hold 100 pages (so I have 18 pages of credit I can make anytime and they will send them to me, I only would pay shipping then) and for the book plus 100 pages was 34.00.  I didn't think that was so bad, especially since I added my own family pictures and included a dedication page to my mom.  I have paid more for recipe books.

Layla spent the night last night.  We both had a terrible sleeping night.  I just had one of my nights that no matter which way I positioned myself I was uncomfortable, and she had a tummy ache.  So we both moaned for a while, slept a little then at some point I woke up and she had went into whine to Papa.  So needless to say tonight we are tired and I am ready for bed right now and it's only a little after 6:00.  LOL 

I am wondering how I did as far as Weight Watcher this last week.  I'll find out on Tuesday.  I just feel like I didn't watch my portions like I should have and definitely did not drink as much water as I needed to.  Every week I promise to do better than the previous week and I don't seem to do it.  I will have to find something to knock me back into the swing of things.

I will talk to Bill and see if he wouldn't mind walking and hour with me.  Even if I just "stroll" and make frequent stops.  I do my best when I have a schedule to keep.  And, walking always made me want to not overeat and ruin the good exercise I just had.  We'll see.