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.

I am so disappointed in myself

I need to have a talk with myself and make me understand that losing weight is my #1 priority right now.  Well, behind trying to stay healthy. 

Let's backtrack shall we?  LoL  Week one on Weight Watchers I lost 5lbs.  Great!!  Week 2 not as good but still lost 3.4lbs, that's a decent loss!
Week 3 I didn't go because of Thyroid surgery the day before, but still thought I was eating right and drinking lots of water.  Week 4 (last Tuesday) I went and GAINED 3.4lbs which puts me right back to week 1.  I am so irritated and disgusted.

So, I am trying to get back on track.  Honestly, I could be much more focused.  I could use the weights I bought every day while sitting around.  I could do stretches and walk small walks.  I could make portion size smaller.

This food thing to me is harder than quitting smoking. 
I just have to keep focused on the transplant goal and in order for me to get there I need to lose. 

I have been waiting and waiting for the results of my Thyroid biopsy.  Just a few minutes ago I decided to call the surgeon.  His nurse tells me I need another biopsy because last time they got no tissue... only fluid.  Only fluid?  How the hell does that happen?  They took 5 samples.  That is 5 chunks off this mass in my throat, guided by an ultra sound and they only get fluid?  This is a "nodule" that on ex-ray and ultra sound shows it's solid?  How the heck does that happen?
I am a little more than irritated.  It was painful.  O.K., not child bearing painful, but very uncomfortable to say the least.  And, last time I didn't have a very easy time keeping my blood pressure stable.  It dropped to 83/76 and took a while to get back up.  I am just not looking forward to this.  The nurse will call me back today and let me know which day next week.  Joy of Joys!

Stay positive .... remain calm ... repeat as needed.  LoL

My memory is total poo lately, so if I keep repeating myself forgive me. 
I am so close to being done with my cookbook.  I am waiting for a few pictures from my brother and a couple recipes from my sister in law.  Then I can order one and see if I like it before I order more for gifts.  I will make myself a note later today to call them and give them by the end of the weekend to send me what I asked for 3 months ago, otherwise the book will be missing them. 

I made some different plum sauce.  I had half of the plums left over and they were getting soft and no one was going to eat them.  I think I like this recipe better.  It tastes more like an oriental plum sauce, I think because it has sesame oil in it.  Anyway... I was once again amazed that 4 pounds of plums (I weighed them for the recipe) once cooked down only made 4 pints of sauce.  So I have spent 2 entire days in the kitchen to make 8 pints of plum sauce.  lol  Oh wait... make that 3 days, I forgot about the rose hips.

We will appreciate those 3 days when we use it to marinate chicken or pork.  Or use it for a dipping sauce.

Berry's and Sore Lungs

Yesterday I canned plums and made Chinese Plum Sauce. Today I canned Rose Hips and made Rose Hip Catsup (more like BBQ sauce). My feet are so swollen, my back hurts and my lungs are just burning like never before.

There are forest fires burning around us. The slightest smell of smoke and I lock myself in the house and don't go out for anything. Yesterday Bill and I spent 2 hours in the morning picking fruit on the nature trail not realizing what I was breathing in. That air quality is nothing to mess with. Sadly we live in a smallish town that doesn't give air quality on the local news. So, I go out and if I can't see the mountains around town I know to stay in.

I can tell when I am going to suffer lung pain when my back starts to hurt. It always starts there then moves to my lungs. Today even my throat was getting sore.

It seems like it used to take fewer fruit to make more. LoL I swear I should have had pints and pints instead of what piddly amount I did. It's O.K. I enjoyed it and it made me actually feel like I accomplished something, which lately I haven't felt much like.

Layla spent the night last night. She is quite the girl. I just adore her. She sleeps with me ... we gave her her own room with a pretty little daybed and T.V. and her toys... but she always ends up in with me. Lately I have just given in and started her out in there. I go to bed much later than she does, but she always seems to know when I get into bed and hugs me and tells me she loves me. If only I could go to bed like that every night.

She started kindergarten a few weeks ago always tells me all about her outfits. This was her first school picture day. She is just growing up so fast.

I forgot to mention that at my last doctors appointment she said she was going to try and get me a Optometrist's appointment (even though my insurance dropped their vision program) I have a few of my medications that say they can cause vision problems. They called me yesterday and told me that she cleared it with my insurance and my appointment is the 5th of October. I am so looking forward to it. My sight is getting so bad. I use my regular glasses and for somethings like my prescription bottles I also use a magnifying glass. I can tell such a difference in a years time. I can't even read things that are written on the T.V..

I have been working on my attitude the last week. I have just let go of needing control. I have come to the conclusion that as far as my health and medical treatments go.. I have no control, and it doesn't help me worrying about when or if something will happen.

As for Bill and Brittney and I... I think that too is better. Bill still has the burden of doing most of the housework and all the laundry, and taking care of the yard. I used to do it all while he worked, even the yard work. Now I guess it's his turn. Only I am not out earning a living or contributing... I am sitting there most the time watching him. I have tried to take over all the cooking and dishes. When I can I do the dusting and vacuuming. I feel bad for him, and I feel guilty not helping.
That is the next thing I need to work on. Letting go of the guilt and realizing for the time being I can't do these things.

My biggest thing is waisted time. Months go by faster than ever now. And, with each one that passes is a missed opportunity to do something to make memories. They think I am crazy when I say we need to start making memories. But we do. I want to start taking pictures that also include me. For the longest time I stayed away from the camera because I was overweight. Well, that is no longer a reason to be left out of family pictures.

I am trying to make plans for after the transplant. If there is a transplant to be had... still no word on that either. Anyway... with or without a transplant there is that chance that my life will be cut short. I finished my advanced directive all I need to do is send it to my brother for his signature. They want 3 witness's. So.. Bill, Brittney and Greg will be making my final decisions if the need be.
I am writing letters to Britt, Bill and Layla to read after I am gone. I still have my will to do, which annoys me. At one time I had the entire thing written out and saved on my last computer. It had a melt down, I didn't back anything up and I lost everything! So, I need to start over.

I'll pick a day when Bill isn't going to be home. It's actually pretty easy. Brittney and Layla get all of my things. I am leaving it up to Brittney to pick out things for Bills daughters and a couple of my friends.
O.K. My night time meds are kicking in and I am off to bed.

Even though I didn't go to Weight Watchers this week (I am feeling like a cheat.  LoL) I am still doing my best to lose weight quickly.  These are 3 days worth of snacks.  Well, minus the plums in the strainer... those are left over from our walk the other day.  I am considering making Chinese plum sauce but have to buy canning jars.  Anyway... these are my snacks; celery and carrots cut into bite sized pieces ... red peppers and celery, and then in the large containers, tomatoes and cucumbers and tomatoes and onions and celery.  It gets me through till dinner time. 

My biggest problem is eating before I go to bed.  This is where a bowl of cereal or a cheese sandwich always was so good.  So, I am making fat free/sugar free pudding with skim rich milk.

Britt was here today and measured me.  We have done this every week for 3 weeks now.  In 3 weeks I have lost 4 inches off my stomach.  Yikes... Still have lots of inches to go, but that's not bad.  My chest is the same, which is usually the first place I lose it.  Lost some in my arms and thighs and butt, but I am most pleased with my stomach. 
I will be very interested to see what next Tuesdays weigh in brings.  It will be 2 weeks worth of losing instead of just one.  I admit I had a few times that I broke my rules.  I had a pepper jack cheese sandwich with mayo on really good bread one time, and then ate chips one night.

It's the late nights.  All day I can get by drinking water, munching on a carrot if I need to.  But, at night I need something cheesy, salty with mayo and bread!  LoL!!  Just kidding.

I have this idea that might help me.  I love soup, and especially this time of year when there is a nip in the air.  I made some vegetable soup yesterday that was really good and about 1/2 point for 1 cup.  If I bought some good heavy bread of some kind, maybe like a baget or something I could get my fix of bread and still come in under calories and points. 
I'll look at the store and see what kind of bread they have there for serving size and points value.  The Weight Watchers point value is just based on fiber and calories and fat grams.  If those #'s are low enough then I am good.  Actually you want high fiber and low everything else.

Anyway... Just thought I post my nightly struggles.  Tonight I'll go for the pudding when I need that something before bedtime.

Monday was the biopsy

I had my thyroid biopsy.  I usually handle these things very well.  Get in and get out, go home and rest then the next day I am as good as new.  This time the procedure went fine.  He didn't deaden deep enough with lidocaine and had to stop and use some more to numb the area he was taking chunks out of.  Other than that it was bearable, uncomfortable but bearable. 

This time I handled the procedure just fine, it was afterwards that there seem to be a problem.  They had been taking blood pressure before and during.  It started dropping some during the procedure, but after it went low and stayed there.  83/76 is the lowest #.  She told me she wanted to send me to the emergency room instead of releasing me... then kept taking it and finally said I could go home.  Bill, being a paramedic in his working days told me that was trauma criteria and if it had been him he would have taken me to the E.R.  Of course, I chose to come home.  We have a blood pressure monitor here and if it dropped again we are only 5 mins from the hospital.

As it was, I came home and slept all day almost through until Tuesday which is not like me.
Yesterday I felt much better.  So... what made my blood pressure drop like that I dunno?  Oh yeah... I will find out the pathology of the 5 chunks by the end of the week or next week.  I am counting on next week.  LoL

I didn't go to Weight Watchers yesterday.  Bill said it might be a good idea to stick close to home just in case.  So... I don't have weigh in results to give you.  I think I did well.  I know I am losing inches.  Britt took my measurements when we first started and last week I had lost a 1/2 inch pretty much in every measuring spot, except my breasts.  Those things are the last to go. 

Anyway, I had all these veggies and apples here, so I made breads.  I made 2 loaves (with 2 more to go today) of Zucchini Bread with Walnuts, 2 loaves of Apple bread with no nuts (for Britt), and 2 loaves of Carrot Bread with Pecans.  All from that one Zucchini bread recipe that is around here somewhere.  Anyway... Great recipes. 
I used 1 1/2 cups whole wheat flour and 1 1/2 cups white flour just because and really couldn't tell much difference.  It just made a heavier bread is all, and that's fine with me.  It adds fiber which is never a bad thing.

I haven't heard anything about the transplant.  I trying not to think about it and just live life dealing with the Copd.  My lungs have been burning again.  This time it's not letting up.  I still have that pain in my right lung when I breath in and out... like a stabbing knife pain.  Dr. says that's normal with my damaged lobes.  I also seem to be having nose bleeds much more frequently than before.  I am using saline spray trying to moisturize the tissue.  It obviously is not working.  So now I keep tissue with me always just in case.  :)  Love this Copd and all the little things we have to do to accommodate the disease! 
I have been taking the Flexeril during the days now.  And, since about day 4 or 5 I can now take it without it "doping" me and making me feel fuzzy. 

Fall is in the air.  Actually I think today is the first day of fall.  I love this time of year.  Warm daily temps about 65-70 with a chill, just letting us know there is a change coming ... Cool nights that tell my tomatoes to hurry up and get ripe!  LoL
I have our fireplace going this morning, and all it does it make me wanna decorate for Christmas.  I know, I know!  I have this problem with Christmas decorating.  One year I had the tree (fake) up before Halloween, and the trick-or-treaters were so confused!  LOL  Bill swears that any month ending in "BER" is fair game at our house for Christmas decorations.  He tried to get me interested in Halloween decorating, but no, not so much.  Black and Orange and spider webs doesn't "do it for me".

I have already bought a couple red pillows for the couch, and was eyeing this really pretty red furry throw to go with them.  One would think Bill would get annoyed with this.... Now... Every year since Layla has been here (5 now) Bill starts growing his beard out in August and has his own Santa Suit and plays Santa every year.  Some of the stores even hire him to sit and hand out candy canes to their customers.  LOL  He used to play Santa for the 911 centers Christmas party.  He doesn't charge them.  He played Santa for the Borders book store last year and Mrs. Santa (that would be me) got a 25$ gift card and a stuffed bear for Layla. 

I have about 5 more recipes to add to the cookbook and I am waiting now for a few pictures from my Aunt and then I can get my cook book done.  I promise when it gets done I'll post a link here.  I am excited about it.  It will make great Christmas presents for Brittney and my brothers. 

Britt is coming over this morning to wax her poor mom.  My eyesight is SO bad anymore that I can't even see hairs growing in places they shouldn't ... so I told Britt it is her job to make sure I am presentable.  She also is in charge of my "proper" hair color.  Over the years let's just say it is getting "lighter". 
I love her and she takes good care of me.

I promise to be better

I have talked, I have listened and I am doing better.  Bill and Brittney and I had a long discussion about my behavior, about their expectations and about the reality of what is going on with me.

We all decided to take off the gloves "so to speak" and just be honest with each other.  I had been keeping things from Brittney so I wouldn't worry her or burden that poor child with her mom's problems.  She explained to me that she knows me well enough to know when she asks me how I am doing and I give a half assed "O.K." that I am not being truthful with her.  At the same time I expect her to let me know (the way she used to) when things are upsetting her, because I can also tell when she is upset or going through something.
With Bill I told him I expect him to go to doctor appointments with me and learn what will be happening.  That by him not talking to me about things it is driving us further apart.  And, that also goes for me.  I need to not assume he is not interested because he doesn't ask questions... and just tell him what is worrying me and what is making me afraid.  We both agreed we need to become a married couple again and quit dancing around our problems.

I have tried to warn them that depression is a very real part of Copd, and I have no information to say this, but I can only imagine being told you need a lung transplant can add to that.  I am trying.  I am doing my best.  I just have some days where I am tired of waiting...... And, YES I KNOW, I have just begun.  Like I have said, patience is not one of my strong traits. That will be one of my biggest challenges .... to just let things happen at the pace they are supposed to.  No amount of wishing or bitching on my part will make it happen any sooner. 

I wanted to at least think about starting to pack.  Britt and Bill tell me to try and just relax and do what needs to be done right now for my health.  That if we get the call to be in Seattle whenever Britt and Fernando can come over here and babysit the dogs and pack everything if we need them too.  I have to give up control.  That's not easy. 

I have to realize that Bill worries about me when I leave the house now, so a phone call to him wouldn't kill me.  To remember I can't or shouldn't go on walks by myself.  Just in case.  These things are hard for me.  I have always done things my way.  If I wanted to go see my dad and Bill didn't want to go I would pack up and drive the 12+ hours to get there by myself.  I owned my own business and never answered to anyone. 
So, this is all new territory to me.  I think the only person I have ever felt really compelled to answer to was my mom and only when she would guilt me extra hard.  LOL

As far as my step father and step mother.  If I wanted to be a grown up and considerate I would say... I wish them well.  But evidently I am neither, because I do not wish them well.  I had been working on this family recipe book for months now.  I worked so hard to find pictures of family to fill it.  I am now using cropping to remove Abe from all of the pictures.  This book will be for me and my  brothers and any friends who wish to order one... If they feel like having Abe in pictures is needed then they can add him. 
I don't want to open that book up and see him with my mom and think of how he disrespected her and made their relationship meaningless to me.  I want to remember mom happy and smiling.  It's my book, I can do what I want with it.  Now... tell me that doesn't sound like a small child having a tantrum!  lol

Bill and Layla and I went Berry picking today and it reminded me of this picture and this day.  We lived in Alaska and we were out on a beautiful fall day picking rose hips by the gallons!  LOL  Then mom went home and made batch after batch of rose hip catsup.  I called the Alaska Extension office years later and asked them about the recipe and they sent me a really nice book of wild Alaska Berry's and fruit and recipes to make all kinds of stuff.
So... We picked and picked today.  Bill picked wild plums, and then he and Layla picked black berries while I picked rose hips.  I didn't pick nearly enough so we will go back down Tuesday and pick enough more to make catsup.  Then we'll need to buy canning jars and lids.  I thought I was over this years ago!  LoL  I haven't canned in forever.
Smelling the rose hips took me right back to our house and the smells.  Ahhh It was nice.

Tomorrow morning is my Thyroid biopsy FINALLY!  It's only been 3 or 4 months.  I am of course not looking forward to the procedure, but will be glad to get some answers.
It is just done with a local anesthesia and will only take about an hour.  Once it's finished I can just go.  No lifting or even twisting of my neck.  She said just get into a chair and stay there for the day.  That the thyroid is full of blood vessels and bleeding is always a concern.  So... I will sit.  I hate sitting... but I will sit. 

I am not sure who is reading this anymore.  But, I just wanted to thank my friends.  Those who support me and don't make me feel like I am being a baby or pain in the butt.  Your kindness and friendship mean the world to me. 

Today isn't good

I feel like I am in a downward spiral.  I have hit the bottom, at least the bottom for me.  I don't think I have ever sunk this far.  I feel anger... great anger.  Anger at those around me and destain for myself for feeling like this.  I have never experienced such dread before.  What brought it on the last couple days?  Who knows?  It could be pushing at Bill and getting frustrated he won't do or say the things I need, or it could be just a new bigger depression. 
I hear that my step dad is back together (officially) with my step mom.  Long story... one I don't care to go into right now, but I have such anger.  HUGE AMOUNTS OF ANGER, and sadness for my parents who are both dead.  Neither one of them would approve.  Neither one of them would be O.K. with this. 

Is this what happens when your spouse dies, you just quit thinking about them and honoring their memory?  Because this is not honor.  This is a spit in the face.  I felt sick to my stomach when I read on a face book page how "happy they are together, and it is such a nice ending to their lives".  BULLSHIT!  It is like all the pain and anguish of my youth was for nothing.  When I went to visit my father it was understood that my "other parents" name was not to be mentioned, and the same when I was with my mom.  Even as the years went by and I grew into an adult.  Now they are back together and both my parents have died.  That is honor, that is cherishing a memory.  Anger, that's a good word for being 48 and feeling like my mom and dad never mattered to them. 

It just added to my day.  Bill and I got into a "discussion".  Discussion is a polite word for not quite fighting, but loud arguing and accusing the other of being the reason for all discomfort in the house.

According to Bill, I would not have to worry about any of this if I would have quit smoking when "he asked".  That was almost enough to make me pack a bag and leave.  He brings it up once in a while, this was a below the belt hit though. 
Evidently it's not just Bill who thinks I am being mean or short tempered, he says Britt feels the same way.  So, Britt comes over to bring Layla's things (because Layla is spending the night) and I say.. "so, I hear I am being quite the bitch lately and treating you badly"?  She says, we will talk about it tomorrow when she comes to get Layla.  Which just means I have another day of crying, sobbing and breathlessness ahead of me. 

The last person I would want to hurt is Britt.  I have even tried to keep tests and news from her to sheild her from hurt or unnecessary worrying until I get all the results. 

The thing is... yes I know I am moody.  I tried to explain to Bill I sit awake nights when he goes to bed at 6:30 or 7:00 and think of nothing but what is ahead for us.  All the unkowns... will we have to get an apartment?  Can we afford it?  How long will we be away from home?  Should we just sell our house and relocate?  How long until I even hear anything? 

I just finished yesterday all day filling out my Advanced Directive.  It took me all day.  I thought about each question... Do you want tube feeding and life saving measures if you are unable to speak for yourself and there is little to no hope for recovery? 

This advanced directive I got from the hospital is very specific about anykind of scenario that might come up.  I told Bill tonight when he kept telling me how moody I am and how he feels like he is walking on egg shells around me... First I apologized to him, then I told him this.... After spending about 8 hours (while he was across the street helping a neighbor build a deck) deciding my fate, in every life and death scenario there is... how do I change moods to happy, carefree and agreeable? 
It may be easier for him and Brittney to be judgemental because they are not dealing with this on a daily basis.  I go to bed at night and lay there thinking about surgery, about what happens to those around me if I don't make it, about if I do make it and what will life be like and how long will it be?
Then to have Bill tell me I did this to myself........... YES I DID.  Should I wear a scarlette letter around my neck so everyone knows, yes I am sick... but I somehow deserve this because I did not listen to my husband and quit smoking?  If I never hear that statement again it will be too soon.

Bill has not been to ONE doctors appointment with me.  Britt has been to 3.  She is more likely to realize what I am going through than Bill is because she has heard it from the doctors.  I try and tell Bill and he argues with me. 

I guess I have made this public enough.  Bottom line is I had a crappy week.  I felt terrible, tired, moody, lungs burn, nose bleeds, and irritable because I want to eat comfort food... Cheese, Red meat, Grease. 

I am upset.  I feel like the whole world is against me right now.  I know that is over dramatizing things... but I need to get a grip.  This is not pity, or feeling sorry for myself.  This is actual fear.  It is writing a will.  It is writing letters to file away for Bill, Britt and Layla.  It is preparing for what "could" happen.  That is not being morbid.  It is very real. 
I am hoping that this mood lifts.  I am hoping I can bring back my family.  I really miss them.  Bill is like a stranger who lives in the house with me.  He sleeps with the dogs, me in the guest room because of my tubing and concentrator.  With my moods he leaves and finds things to do elsewhere.  Then comes home and goes to bed.  Britt is busy with her life and her boyfriend and Layla being in school and herself starting back to school. 
It's me who is alone.  I guess I am to blame.

When people tell you enough that you've changed I find it hard to figure out who I am or what I was like before? 

2nd Weigh In

This morning was my second weigh in at Weight Watchers.... lost 3.4 pounds.  It's not exactly the 5 pounds I lost last week, but it's still significant for one week.  I will be happy with that.  I am still eating once a day mostly, and always a good protein and a ton of veggies.. be it broccoli or a ton of green leafy things. 
I have been eating fish which amazes me.  It still is not what I would call one of my favorite meals, but it is high in protein and lean with good oils.  OH MY GOD I have become a granola cruncher!!  LOL  Not quite, but I am watching very closely what goes in my mouth.
My problem, and for those who don't like "personal blunt talk" shut your eyes and skip over this part.  .... The heart medication the doctor put me on causes Diarrhea.  I was taking 5 big fiber capsules a day and NADA.  So today I talked to my other doctor who tells me I am not normal... well, DUH I said.  She told me which kind of gentle laxative to use which won't cramp me up and I can use it ever couple days if I want. 
One would think with all this healthy food going in... something would easily come out.  LOL  O.K. enough talk of that type of stuff.

I am working on the cookbook and will soon be lumping all the recipes into one category.  I will still occasionally add one here and there, but for the most part once I get done with the cookbook I am taking a break on the food writing.  All it does is make me hungry.  I am already wondering what will happen this year when I start my Christmas baking.  Those cookies and fudge will have to come out and go right into baskets for our friends.

I'm here

I took a much needed few days off.  I had a lovely talk with the nicest woman (I won't mention her name without her permission).  She had a transplant in 1998 if I remember dates correctly?
It was wonderful to hear her speak about the surgery, the recovery and the ongoing battle with infections of all kinds and her struggles with the immunosuppresants. 
But, as she said... "I am still here, I am oxygen free and I am living".  That about says it all.
Another woman called me, come to think about it strangely enough from the same state and live not far from each other.  She hasn't had a transplant yet, but is on the list waiting.
It set my mind at ease to hear actual human beings talk about transplant, rather than read it on some web-site or some hospitals postings.  It also made it much more real.
Both of the women said to try not to think about it.  It can be a long road and patience is necessary.  Well, I need to take a class on that, because it is not one of my best attributes.
I spoke with my Pulmonolgist's nurse last week and she said that once she gets things going she will call me and let me know.  So, it really is out of my hands and now I wait to get on a list that I will wait some more. 
I feel like I have all this time that I could be doing something?   Packing things in boxes so when we leave we can either rent this house or move in Brittney.  Either way... we will need to pack our things.  Some to take with us.. some to store.  I have been going through small places and throwing things out and organizing others. 
I am trying also to tie up loose ends.  I am not thinking morbidly... only realistically.  I have yet to do the advanced directive or will.  Even though I blogged about it somewhere here... and expressed the importance of having such things!  Ugh... I am not good at taking my own advice either.
This recipe book that I started I am almost done with.  Once I finish I will post a link here and you can order a copy if you want.  It will have most of these recipes along with many more from my family.  I was surprised how cheap only 35.00 for the book.  Printed, using my own pictures, pages that you an add to and remove to use in the kitchen.  Very nice.  It is actually 35$ for 100 pages, I have 74 pages and one dedication page to my mom.  So, I can over time add 25 more pages to this book for free.
Anyway... I thought that was one thing I could get done that I wouldn't want to drag a large box of family pictures and recipes along with me. 
I was talking to my brother last night (love him and he calms me down) and he said if we are taking the dogs (which Bill won't move without) we may be asking for trouble.  Only because we would then have to find somewhere to rent that allows dogs and has an elevator or ground floor apartment so I can get in and out easily.  Didn't even think about that.  I would have been on the 10th floor and walked down to go shopping and wouldn't be able to get back UP to my own apartment.  LOL
I have had a few outbursts at Bill and Britt.  Just moody, snotty behavior of which I should be ashamed.  One day poor Bill got it with both guns. 
I was trying to snap him into reality and trying to making him talk to me about this transplant business.  He will talk to his friends, our kids, my brothers but not me.  He said he was afraid.  I tried to explain that is to be expected and we can be afraid together, but I need to be able to talk to him.  I need to be able to know he understands what is in store for us.  He just shuts down, which I find to be the most frustrating. 
Anyway... I am working on my moods.  The last 2 days are much better. 
I just didn't want you all to think I had vanished.  I just needed a few days of down time. 
Before I get off the computer I forgot to mention the hospital called me and my thyroid biopsy is scheduled for the 20th.  Now, I am off to bed.

It's been a long day

The last couple days for me have been tough.  I am not sure why now?  I thought I had gotten used to the word transplant, even spoke about it to a few friends and my brother without crying or wallowing in self pity.  These last couple days I think the full spectrum of what will happen and what needs to be done hit me.

I got a call this afternoon from the Radiology department at the hospital.  The surgeon who was going to do my biopsy of my Thyroid can't do it now and so a Radiologist will.  I will have it done to only the right nodule on my Thyroid the 20th of this month.  Day surgery, just need someone to drive me home because of the anesthesia they will use.  A local I do believe, maybe a Valium to relax me they said.  She'll call the day before and go over what I am not to do, and from now until then I am supposed to go up to the hospital for blood work.  Fine and dandy, it will be nice to be able to check this off my list of things falling apart on me.

That's how I feel.  Like my body bit by bit is breaking and becoming useless. 

I had my appointment with my Primary Care Doc today.  I adore her.  She was not surprised at my transplant situation.  That is why she pushed to get my pulmonologist appointment pushed up.  She and my pulmonologist decided they cannot fix my heart issue.  It's my lungs causing my heart problems.  Medication will mask the problem, but not fix it. 
Also, my oxygen saturation is at a point where I will need a different kind of concentrator at home, and a larger canister.  I now will need to have one of those tall slim ones that is on a cart to wheel around which means how the hell will I shop or do anything? 
Also, because my saturation is at such a low point she said I could notice problems with coordination.  And, this explains my headaches that won't go away even with meds, and my short term memory loss.

So.... I am becoming an idiot!  I am kidding and making fun of only myself, not others who are going through this.  That wasn't very nice of me... but I am beyond frustrated.  I really feel like damaged goods.  I feel like I can't be left alone, I can't be depended on for simple things.  I forget to take my meds some days.  I forget words when I am doing these blogs, and sometimes it takes minutes.. I mean 5 or 10 minutes to figure out a word.  I can tell you the definition of it, but can't come up with the word.  I will be talking to people and suddenly lose track of my train of thought.  Yes, this has happened once or twice, but it is happening to me almost daily now.  I scold Bill and Brittney when say "I told you" that, or "we just talked about that".... It feels like they aren't listening to me.  Listening... that's another thing my hearing is going.. I can't tolerate over stimulation anymore.  Like having the T.V. going and Bill talking on the phone, and Brittney talking to me.  I just want to scream, and sometimes do... I have Layla trained not to make a lot of noise in the house.
These are things that are new.  I could handle before my shortness of breath, the tightness in my chest, the hoarseness of my voice... But not my ability to hear, remember and write. 
This must be what the beginning stages of Alzheimer's feels like.  TERRIBLE.

OK,  Dinner tonight.
1/2 cup egg whites, 1 ounce pepper jack cheese, 3 slices turkey bacon 1 slice crumbled and 2 eaten, 8 potato slices baked then smashed, onions, red peppers and some cherry tomatoes.
Weight Watcher Point total 12 and water. 

Wandering Aimlessly

To eat today... 1/2 cup Edamame just as a snack to munch on.  I love them.  They are loaded with fiber and no fat and little calories.  Then I had a cup or so of cherry tomatoes off the vine.  :)  That got me through to dinner, that and water, water, water.
Dinner was Sole (white fish) cherry tomatoes with a sprinkle of fresh parm cheese and a rice salad I made.  Brown rice cooked as package says.  Remove and add 2 teaspoons of sesame seed oil and let cool.  While waiting to cool take frozen peas out and let thaw and chop some green onion.  Throw all together and refrigerate.  The longer it sits the better it is.  Salt to taste... I am off salt right now so I forget to add that.
Anyway... that's dinner.  High fiber, low carb, low calories and fat.... And, water, water, water.  If someone a year ago would have told me I would be eating fish and drinking water all day I would have told them they need to lay off the juice!  LoL

I have had a bad day.  I think I can safely say this is the second one of these I have had in a year.  The first one was just frustration and fear of having emphysema, and this one I think is just a combination of being afraid and not knowing what to expect, and the waiting.  I KNOW and I just am getting started.  I strike out, I cry and basically act like a spoiled child not getting her way.  Three times today my O2 cord has been jerked off my face.  Usually I can just put it back on and smile and continue on.... today I threw it across the room and stormed off.  It is either me sitting down, then when I stand up I step on the tubing and rip it off, or it gets caught under a door or around the couch, or under the refrigerator door and gets ripped from my face... once in a while the poor dogs will get caught up in it, or Bill will step on it.  I HATE IT!!  All it does is remind me how much of a pain I am anymore, how I have "medical supplies" that I need and follow me all over the place all day and all night.  I am getting so out of breath that I am considering taking it into the shower with me.  

I got a lovely note from one of my friends, one of my mom's lifetime friends today with copies of some of mom's recipes and a lot of pictures.  I bawled.  I miss my mom so much, there isn't many days that go by that I don't think of her.  I wish she were here with me.  We both did this to ourselves, she just got away with it for more years than I did.  I wish we would have both smartened up years ago and gave up the smokes so we could be crafting or exploring today.  I watch Brittney smoke and it takes every ounce in me not to scream at her.  I know that won't do any good.  She tells me she will quit in November.  I am going to hold her too it. 
It was a nice surprise today and I need to remember to get a Thank You note out to her.  

Speaking of remembering... The last month I have noticed I am forgetting small things... Big things... just things.  Mostly short term, but forgetting just the same.  Bill said today he has noticed it getting worse.  He thinks it is oxygen deprivation to the brain.  Could it be?  
I have a doctors appointment tomorrow afternoon with my Primary Care Doc. I will ask her what her opinion is.  I also have to let her know I have yet to hear from ANYONE regarding my thyroid.  I have to have all medical issues resolved by the time I get to Seattle.  
I have to remember to just BREATH..... B R E A T H. 

I got a call from a woman who I met on a transplant group on face book.  She too is waiting.  Only she is waiting for a double lung transplant.  She's been on the list at the University of Wisconsin for 5 years.  She gave me some good advice and some information.
Tomorrow morning a woman will call me that has had 2 transplants.  I am very interested to talk to her. 

I know this will take the patience of Jobe, something I have none of... especially lately and with this disease I want instant information.  That is just not possible, and I know I am being unreasonable. 
I spend nights while waiting to fall asleep going over having to move to Seattle and what to do about our house, my things, our dogs?  How long will we have to live there?  Should we sell our house and just move and buy something there?  It wouldn't be out of the question I have my brothers in Eastern Washington and it would be nice to be closer to them.  Then I wonder about Britt and Layla.  I haven't been away from Layla for any period of time.  How will I handle being away from my girls?  Will Bill be happy there?  What will he do to keep busy?  If I live out of Oregon will my SSI transfer?  Will Oregon Health Plan (my insurance) still cover me if I am living in Washington?  So many questions and many of these I won't know until I get to Seattle for my first visit.  So... I will continue to lay there at night and wonder.  These are what sleepless nights are made of.

Speaking of sleeping... It seems lately I am asleep more than I am awake.  When I am awake I am tired.  I am sure that is oxygen saturation.  I really need to order an oximeter to find out what my O2 levels are.  It just seems everything costs so much $$. 

I Borrowed my neighbor's water-bath canner.  I have a ton of tomatoes this year and still so many that are green that I hope will ripen.  They are starting to get ahead of me as far as what I can eat, and what will go to waste.  So, I am going tomorrow to buy some canning jars and "put up" some fresh tomatoes.  At least then I will have fresh good tasting tomatoes for soups and casseroles this winter.  I am also going to go back to the nature trail and pick some rose hips.  I found Mom's recipe for the sauce and I will can that as well.  If there are any of the wild plums I will see what I can do.  I don't think I will can those, but will definitely grab some to make plum sauce with... Great for lean pork or even chicken.

Well, as you can see I am all over the place today.  I cannot get one thought to stick, I can't get one mood to hold onto.  Must be time for bed.

First... the girls came over this afternoon.  It was Layla's first day of Kindergarten today.  Here's my beautiful girls.

Layla was so excited and felt like such a big girl.  She said though... grandma there are no blankets at school and so that means no thumb sucking.  LoL  We have been trying to get her to stop sucking her thumb.  Actually no one has worked on it very much, only to tell her Big Girls don't suck their finger.  She does really good until she actually holds her blanket... as soon as she can feel her blanket it's automatic, her finger goes into her mouth.  She goes a full day.  That surprises me.  I thought kindergarten was 1/2 days.  Anyway... She will do great.  Except, WOW there are 35 kids in her class with one teacher.  That is crazy.  What happens to all those school levy's and taxes we pay?  That to me is just unfair to the kids and the poor teacher.  Britt says they rely on parents volunteering.  If that is the case, then the city should give them credit on their taxes.  LoL  When I was little no one would have considered having parents help teach and our taxes were so much less.  What's going on?  Another thing Britt isn't really happy about is their lunches.  Britt said she looked at the months menu and the healthiest choice was one meal of turkey with gravy in a bowl... And that isn't even healthy.  The rest of the menu is pizza, corn dogs, chicken nuggets, french fries, puddings, and chocolate milk.  MY GOD!  No wonder the kids of this generation are getting fat. 
Did any of you see the Jamie Oliver experiment?  When he fought one town somewhere in the Midwest to re-do the school lunch program to fresh healthy foods, instead of frozen, processed foods.  It took a act of congress almost to let him feed kids fresh meat instead of processed chicken and nuggets.  Fresh veggies instead of french fries... the school's idea of a approved healthy veggie was french fries!!!!!!
Anyway... Britt said Layla will most likely have a few lunches at school, but will also be packed a decent lunch to take to school and then drink their chocolate milk!  LOL  Ridiculous.
Ok... I am off subject again, and this time really going to bed.