Happy 2012, a year of hope?

This is my New Years Eve blog.  So much promise in the New Year. So many uncertainties.  I am sure there will be struggles, success's and failures.  I hope to remain me.  It seems the more my disease progresses the less of me I recognize.

I have a difficult time sometimes talking when they are in another room.  And, repeating myself over and over again is maddening.... I will eventually run out of air or my voice gets raspy really quick.  I am also finding in groups of people trying to talk over the noise I just can't do anymore.  Yelling is out of the question.

I used to be so quiet and easy going and now I find it hard to hold my tongue.  I figure if I need to stand up for myself now is the time.  Those around me aren't used to that.

I am finding that since I have been diagnosed there is more wrong with me.  I know that is because with the diagnoses came insurance for the first time in a long time.  I have had a laundry list of things found, things removed, things being watched, lung issues, heart issues, thyroid issues, breast issues and uterus issues.  I am not sure what will be next?
I was explaining to someone that I can handle my Copd and Emphysema most of the time without too much surprise.  What I am finding impossible is these surprises that need to be dealt with.  Like I told my Primary Care Doctor when she asked me about this fibroid tumor on my uterus.... she asked if it came down to watching it for it's growth or just removing the uterus?  And, I answered I would prefer to remove my uterus because that would be one less thing to worry about returning or getting worse.
It's the small things that get in the way.
I can usually plan events around my Copd.  Yes, I may be having breathing issues, but usually I can go sit and watch a concert, or if the weather is right... go for walks.  I can almost always go to the store and walk around.  I can go visit.  I just pack my oxygen around with me and be wise enough to check to make sure I won't run out before I can get back home.
It's these small things that bring me to a stop.  Even this small cyst I had removed, had me at home a couple days.  Not because I couldn't take the pain, but because of the location.  For men imagine a hole right in the middle of your chest.  Every time your arms move... so does that area, every time you turn... so does your chest.  It just was in a location that is uncomfortable.

I read a nurses posting today... I happen to know this nurse works on a transplant floor.

He wrote....."Happy New Year to all!  Was hoping for a low census day-but alas it is not to be.  I will be spending my New Year's Eve ministering to the unwell, indisposed, unhealthy, diseased, ailing, afflicted and otherwise infirm patrons of the (   ) Medical Center". 

I answered..... "Happy New Year to you. And bless the unwell, indisposed, unhealthy, diseased, ailing, afflicted and otherwise ill patients. Someday I will be one of those."  

I was pissed because it seemed to me he was "one of those nurses" who bitch and moan about their patients.  If that is the case, then I think it's retirement time.  Especially on the transplant ward where the patients need extra care and the families need extra re-assurance.  I have heard him complain before about the families thinking the nurses are hired for them.  

It infuriated me.  One day I will be there.  Now I am rethinking that transplant center for several reasons.  That just locked in my decision.  

I have hope for this year.  I have plans and I think now that Bill has seen a decline even he is on board with doing a few things.  Getting out and doing a little sight seeing, some short distance traveling, some camping (where they have electricity for my concentrator lol), some fishing.  Just doing.  Maybe visiting some family.  All of my family with the exception of my big brother have never seen me with oxygen.  I want the chance to see them before I get where I can't travel anymore.  I don't want our only visit to be in a hospital room.... which for some reason is the way my family works.  We all love each other, but most of us won't travel to see anyone.  That's another blog all together.

Bill has mentioned that he has noticed my decline.  It is almost comforting to know that someone else notices.  That I am not just trying to bow out of life.  I do what I can, go where I can and live the best life I can.  I sometimes feel like I am not trying hard enough.  That I can do more.  I have realized that I have to be careful, because the last 3 times I have pushed myself the worse my breathing gets, and it doesn't recover to where it was.  

The words of my Pulmonologist to Brittney's question about Copd rings in my head sometimes....... She will go along just fine then get a cold or have an exacerbation and will never quite get back to where she was.  Then she will go along again until another event happens.  This year I had several events.  I am hoping 2012 will be kind to me.

Happy New Year everyone.  May we have a Happy and Healthy 2012.

Not for weak tummy's

I decided (I don't know why) that I wanted to keep a picture of the wick and cyst.  I seem to be getting these more and more.  The doctor said some people do, and some don't.  I asked if I wasn't scrubbing hard enough?  He laughed and said no.  For some reason the skin will take a blemish and begin to close over it and then forming a pocket and the blemish becomes like a seed that is encapsuled.  It can stay like that forever and not become a problem, or like me...... everything on my body is turning against me and these become infected and need to be removed.

The wick is the white-sih part sticking out.  My skin around it is burned from the tape.  Today I just put a large bandage over it.  We'll see how that does.

I will blog again later tonight, and I promise it won't be gross!  lol

New Years Eve, Eve....

Happy New Years Eve, Eve.  I can remember when I was in my 20's this night would be the beginning of celebrating the New Year.

These days I am never awake for the ball drop.  I am usually in bed asleep by 11:00 or 11:30.... some nights much sooner.
We have no plans.  We usually don't.  I kind of miss the days when we would have friends over.  I couldn't do it right now, I don't have the stamina.

An update on the cyst.  It is healing really well.  Every morning I get up and shower then before I put on a new bandage I cut off 1 1/2 inches of the wick.  Maybe a few more mornings and the wick will be gone.  Really the only painful part is the tape.  I am even using paper tape for sensitive skin and it is blistering me.  The bandage is in a strange location flat on the bottom where the hole is and rising on both sides, therefore trying to find new spots to put the tape is difficult.

I went today to Ross (a discount clothing and home store) and bought a large canvas painting and 2 smaller framed ones for the living room.  I want to bring more browns and reds into it without being gaudy.  I think I did alright.  On the first I am going back to purchase one more canvas one for a short long wall then I'll be done.
I also bought 5 small plants.  My goal is to get a better air quality in the house.  Some freshness.  The carpets have been shampooed, the drapes washed and the couch cushions vacuumed and washed.
I want to pain the living room.....
I have sworn that someday I am going to paint the walls again.
Last time I picked out a sample it was called wooden spoon... a tan/beige/brown color.  We bought 4 gallons and started painting. About half way done I told Bill this is not drying darker!  He just kept saying it will when we get finished.  Well, it turned out a pale shade of pink or oyster.  I can barely stand it!!

In October I bought paint for my room.  Chocolate Brown for the walls and Robins Egg Blue for the ceiling.  I have a deep brown fuzzy comforter and powder blue sheets.  I can't wait to get it finished.  We have lots to do.  Actually, Bill has most of it to do.  I just do what I can (which isn't much).  The summer/fall we finished the kitchen.  We did the dining room last year.  This year I want to concentrate on my room, the living room and in the Spring he is painting the outside.
This is what happens when you have a house that was built in the 20's and soaks up paint like crazy.  The walls inside are lathe and plaster, and the outside is just wood siding... I am a woman who doesn't know much about siding... I would guess it's 1x12's??? Anyway, it's time again to paint it.

Injections hurt!

I followed directions and took all the antibiotics for my cyst and went in today for a follow up appointment.

Soon the doctor came in, looked at it and instructed the nurse he would need 4x4's, Lidocaine and 18 ( I think) gauge needles.  He had me take off my shirt and bra and placed white paper over most of my breasts and started injecting Lidocaine in a circle around my cleavage.  I lost count after 14 injections, there were more, but by that time I was trying to remember to breath.  He reminded me that he hadn't heard my O2 interrupter go off in quite some time.  It isn't a good idea to hold ones breath when they  have low oxygen levels anyway.  lol

Finally he began to cut and I felt snipping and pulling and digging.  He said he was leaving a "wick" inside to help it continue to drain.  He then put a pile of 4x4 pads over it and taped it up.  He gave me a paper bag full of pads to bring home in case it kept bleeding.  I thought, how could it bleed through all this?

Well, tonight it is bleeding through.  Not bad yet.... I think I will wait until I change it.  I go see him again in the morning, and I am hoping he can change the bandage.

Here it is as of now...

He tells me that it shouldn't scar badly.  After the Lidocaine wore off this afternoon, my furthest thoughts were scarring!  lol

Layla spent the night tonight and we played some of her games she got for Christmas.  Her and Priscilla went to bed early tonight.

I called Gail (my friend who was diagnosed with lung cancer) and she just had the brain scan today.  She promises to let me know when the get the results.  So far they are talking about 8 weeks of radiation and chemo.  I wish I could go down there but I think I am looking at having my uterus removed in January sometime.

I'll keep you updated on how everything goes.

Not one of my best days

Layla and I played around this morning.  She read me books and did a pretty good job of sounding out some big words.  Then she started to draw Christmas ornaments and write me cards.  They are learning to write by sounding out words so my cards looked something like this...............
Der granmaw I hoop you have a speshl crismus.
P.S you or my life.
Of course this melted me... but I had to tease her for her spelling and had her get me another piece of paper so I could write it out the right way.  pffft.  Why don't I just leave these moments alone?!  I hurt her feelings and she said... Grandma I think it's time for me to go home now.
As it worked out I had just enough time to get her home and get to my appointment at the hospital, then some grocery shopping for Christmas Eve. dinner.

I had my trans vaginal ultra-sound.  She showed me my uterus, then moving the screen 3 times she showed me the enormous tumor growing around it and pushing up on my bladder.  She was showing me the blood supply of it and said because of it's size and because it had so many blood lines, it would most likely mean that my uterus would need to come out.
Then she said what they usually do... of course a doctor will need to read this and get back in touch with you, most likely after Christmas.

I have a feeling a surgery is in my New Years future.
I picked up the antibiotics for the cyst I have in my cleavage and last night and this afternoon I have been keeping a hot pad on it.  All it is doing is making it more sore.

So.... I hope tomorrow's blog is positive and I can just put this out of my mind until the time comes to deal with it.  It is just a surgery.  This is not life or death.  It just is... one more thing.  I feel like a carnival act that grows all these weird things.  Or those ladies you hear about on the T.V. that had a 100 pound growth they found mysteriously.
This is not one of my better nights.  I am going to medicate and go to bed.  More tomorrow.

Just one more thing

Let me catch you up to date now that I have my computer back.  It's nice to have a laptop... but I get so tired of typing and then suddenly having everything disappear.

My primary doctor, I mentioned...went on maternity leave.  She had her baby (a boy) on Thanksgiving.  She won't be back to work until the latter part of January.  In the meantime I had one of her referral appointments with the gynecologist.  It was regarding my bladder leakage and basic pain in that area.  After a lengthy discussion and question and answer period and exam, he scheduled a trans vaginal ultrasound.  It will be this Thursday.  Evidently my Uterus is enlarged and there is a mass growing on it.

He had me bring home what he calls a "hat".  It's use is No Where near the head.  You urinate in it and measure the intake (or is it out-take?).  For 3 days I had to keep track of each time urine leaked, everything I drank, and how much I went to the bathroom.

I was so happy to throw the "hat" away.  I mailed the results to him and I am sure after this Thursday's ultra sound he will call me after Christmas for a follow up.  He did say that if surgery was required he was sure it wouldn't be until after the first of the year.  Which, is just fine with me.

Also, I am not sure if you remember but this summer I had a cyst removed on my shoulder.  I went to the walk-in clinic today with anther one that is infected between my cleavage.  I had my doctor in July try to get permission from my insurance company to remove both of them at the same time and they said no because the chest one was not infected.
It makes no sense to me that they wait until it is inflamed and causing pain before they will remove it.  So, I have antibiotics for a week and then I am supposed to go back if it hasn't drained or went away.  It is hard as a rock and the size of a dime, so I am thinking it's not going anywhere.

See?????  I have so much wrong.  My body at about age 35 decided to turn against me.
I told the nurse today as she was trying to look over my records that I am used to the Copd and Emphysema.  I can handle the oxygen and all the meds.... but it's the little things now that drive me crazy.  It's like one more little tiny thing wrong that just is too much.  She said she had cancer and chemo a few years ago and knows exactly how I feel.  It made me feel better to know I wasn't being a cry baby.

Thank you for your prayers

I will be getting my desktop computer back tomorrow so I will be blogging much more.  I have missed a lot of events that I will have to catch up on.

I spoke to Gail on the phone.  She called me after she went and got eyelash extensions which are supposed to remain dry for so many hours.  I wished her well with those instructions!  lol
She is handling it just the right way.  Understanding that a lot of things will change and she just has to take one hurdle at a time.

I wasn't going to mention my Copd because I wants this to be about her and her needs and not me.  Her sister however told her.  So I think a tiny amount I could actually tell her I understood.  I understood about feeling damaged and hearing such news that you automatically go to the worse place and think you are dying.  She is doing good understanding there will be good days and sick days with Chemo.  It is just the not knowing and not being able to plan your life.

We promised to keep in close touch and I told her I will always be here for her at any hour.

 I promise to blog more soon.  Thank you for your thoughts and prayers.

A call you don't want to get

First I'll catch you up.  (I hate this laptop, I keep deleting every line I write... grrrr)

Since my last blog and my doctors appointment I have been house bound.  Well, mostly.  I did make a quick trip to the pharmacy and to my daughters house.  Our air quality has been in the dangerous zone for almost 2 weeks.  I feel like one of those Garfield cats you see in car windows with their faces smashed on the glass looking out. 

My chest is tight.  For those of you without this disease my best way to describe this is to compare it to diving too deep in the water and that tightness you feel in your chest before you can get to the surface and breath in that sweet deep breath.  Well.... I haven't had that breath in about a year, and then only on fortunate days.
So far my new medication isn't too bad.  The only side effect that has surfaced is diahria (sp?)... which is almost fine because all the rest of my other drugs are still causing constipation.  I haven't felt any improvement yet, but it's been less than a week.   LOL  I was pleasantly surprised that my insurance pays 100% of it. 

I got a call tonight.  One of those calls that as soon as you hear the voice and the first sentence, your blood runs cold and your heart just feels heavy.
One of my best friends through Jr. High and High School's sister called to tell me her little sister had just been diagnosed with stage 4 lung cancer.  I can't recall dates (when I hear bad news I get selective hearing) but they opened her up to do a lobectomy (which is pretty much a lung volume reduction surgery) they were going to remove one or both upper lobes, but once they opened her up they found cancer had went into her lymphatic system,  They are doing a brain scan next week to see if it has metastasized.  Her course of action now is chemo, but of course they will not know how bad or how long until all tests are done. 

I am not a very religious person... but please pray for her.  Her name is Gail and I love her, she is 49 years old.

This makes me just want to SCREAM at cigarettes.  We started smoking together, sneaking cigarettes and going "for walks" to smoke them.  We were maybe 13.  Because ..... YES, we knew they were supposed to be bad for us, but "nothing bad will ever happen to us". 

Any way.. I am just heartbroken. 

Sorry for my absence

I went to my Pulmonologist today. For a couple weeks I have really struggled getting air in or out. I had already done the antibiotics and prednisone and it didn't work. He said I have been having an acute exacerbation and most likely alveoli are bursting. I am scheduled for more tests and a spirometry test in February. He put me on a new long term drug called Daliresp.  It has some real nasty side effects. 


He told me that from this point out there is little he can do to ease my pain and breathing issues without surgery. So... when things get bad from now on it means a hospital stay, or major pain medication at home. He told me to limit my exertion but to move about as much as possible. I think that was his way of telling me that exercise is out. I'll do what I can in my chair and with weights.

This just was quite a set back for me. Seems like when things begin to go downhill, it goes quickly.
 
All this and I still don't have my computer back.  I am not too adept at using my laptop for blogging.  I will try and do better and keep you updated on how things are going. 
Don't forget about me!  lol