November

Ahhhhh! It is November and I just had my 3 month follow up with the new drug and the cell load doesn't show up in my blood work

The Dr. did not want to say the C word  But said in another 3, which would be the 6 month follow up if still negative we could.

Frustration

I'm so frustrated right now.....8 wks treatment

I just got the follow up call from my request from phenegran and amiben and loratab


The nurse tells me so use a stool softener...

and then gives me my lab work

my whites are down again 2.3

and she goes on to tell me that if in case of re occurrence this drug allows for re treatment....ARRRRGGGHHHHHHHHHHH~!!!!!!!!!
WHAT !!!!!

And my loving daughter says,  All I know is that a positive attitude helps.......


So here's my positive attitude.

https://www.youtube.com/watch?v=Op8BjKID1gM

:p

treatment

Seven weeks into treatment of a 12 week plan.

side effects
fatigue
headache
insomnia
nausea
loss of appetite
nothing as severe as last time


on 2 weeks white cells down
red cells down
platelets down


on 4 week
white up    childrens gummy one a day  but doubled
red up

and no virus load found,

but 8 more weeks

if i can beat the fatigue    I'll be at home plate


https://www.youtube.com/watch?v=qKax7euEM5Q

No Garden

With the potential availibilty of treatment for the second time round, I decided not to opt for a backyard garden this year.

So after 2 years after first treatment I am approved for treatment this year with a newer drug in the regimen.  I will try and keep updates.

sucks

well after working hours upon hours I arrived home want rest.  later in the night my son is not to be found, you'd think with his latest found troubles he'd  be a stellar person, on no   i found him in the laundry room again it in hand...... So he calls his x to pick up his son...he doesnt understand why.....

Hurt

I have felt this hurt before, many times before.  From my childhood to motherhood.  I wanted to hug my two girls today!

This time I thought it would be different, a week later and it's not.

I hurt, I hurt as only a mother can.  I can only remember tough love.

http://www.youtube.com/watch?v=1m8GSnIkxPM

Emotions sucks

Well this morning I dropped of him and he had a lot to say that I needed it more than him, ,,,,, that I pushed him towards this and if this wasn't for him I told him not to call me.....so I drop him and will not willing give him a ride back.....  I talked to the company tonight and they say that it usually is day 3 before they cooperate...




and tonight is......

Tuesday was a day of joy and also surprise. 

On 1/28/2014  a child is born.

Also a winter storm, meteorologist  called for a dusting of snow.  Now in Alabama that's just an idle threat.

NOT THIS TIME.  The ground surface was below freezing when the snow started, which then turned to ice within 45 minutes.

Our first attempt to leave the hospital was a feeble attempt made in a vehicle we traveled only approximately 1.5 miles in an hour.  We turned around and made is safely back to the hospital and stayed the night. 

Leaving on 1/29/2014 in the afternoon we did make it to our destination.  However the forecast states that with temps dropping again likely more ice as the snow melts.   WOW!!!

Recycled my plastic bags into a grocery tote

I am working on recycling some of my plastic grocery bags,   I'm ashamed to say I sufficiently had enough bags on hand to create one recycle grocery tote.   I found a pattern I liked here

http://www.myrecycledbags.com/2009/01/02/the-green-shopping-bag/ 

I will post pictures when I have completed my tote. 

When life hands you lemons

Well actually it is my sweet neighbor N., she thinks that lemons will help me heal.  And who can say it won't help.  I now have three bags of lemons in my crisper drawer in the refrigerator. LOL

So when a neighbor hands you lemons, try your hand at making a homemade lemon meringue pie.

So walking to the store for list of items, add beer to list, check.  If only they had a  really good selection such as Sierra Nevada I would be much happier.  I will post pic of the pie when it is complete or run back to the store for a purchased one to post.   Ha gotcha!

Plus I have to get bus change.  Forgot on Friday. 

Ps.Reminder don't forget to schedule appt. for January follow up  you've been trying for the last two weeks.  However, if you ask me you're not trying hard enough.

Chances

We make choices in our lives daily.  Many deem them to chance, I do not.  The choices we make are of our own choosing so, we are the ones totally responsible.

Yes we take a chance and step out thinking things can and will be different.  Yet, later we can look back and say shit why did I park there knowing I'll get a ticket.

But you walk to your SUV and say "shit"  grab the ticket like it was the fault of a stranger that just decided to target you and give you a shit ass bad day.

NO!  You did this and in downtown B'ham......really.

little things

So yesterday my lovely oldest daughter gave me a manicure.  Much needed plus it made me feel good  and when I look at them I smile. 

Treatment update, cause there is none.

It's been a while since I commented on my treatment because there is none.  I did go for my follow up in June and my liver looks GOOD!  So for my stupidity I ask.  Exactly what are you looking for?  LEASIONS, well color me whatever.  They did not do any blood work that will come in Jan. The last viral load was at 14million.

I have come to accept I am not a viable candidate for treatment options.  So for now I focus on

My children and grandchildren

My garden is winding down.  I will not do pole beans again even if my back won't hold up to the bush.  But I can find those little bean pods.  No fall garden

I still can what foods I can find at a reasonable cost  My last failure was muscadine jelly which is syrup update: which I later fixed

Work which keeps my mind occupied.

My psoriasis is spreading but just in little spots but covers all of my lower torso

Following the blogs I look to for inspiration

Continue to focus on a means of transportation that is not public.  LOL

Medical bills, but the smallest one is almost paid off!  Woo Hoo!

Green Egg

So, I'm in an office completing my troubleshooting technics on a printer.  I hear in the offices she said he wants a green egg because Joe, Ed and Jack have one.  I'm thinking wow school has started so early that the kids are wanting what the others have (school just started here).  Then my mind switches to ok so someone's hen has laid green eggs.

While I'm moving between computer and the printer working out the bugs....    I hear a male voice grilling has been the best.  I used to worry when we invited guest over, now I've learned that when I've practiced on the GRILL that I can cook.      O.K. laugh now.

GRILL, REALLY  it was the latter conversation I realized that it wasn't school, nor was it hens eggs.


It was really the Green Egg.

How our mind works?    It was a really tiring couple of weeks for me.   And I live in the city but wish for the country.   LOL

DENIED

Well Yesterday I received from my health insurance a denial letter for one of the three meds I need for treatment.  I understand they mean well and they mentioned I can appeal.  But after receiving that I of course searched the internet to find why are they so concerned about my treatment, enough to deny me.

Well it appears they may have reason, the drug denied is an inhibitor, which was already in the drug regimen I had.  I was cleared of all virus in my blood work two consecutive months we then ended treatment. 

On my 6 months check up its back.  I use this example lightly.......So I see their thinking and science as     Oh the virus was handled but appeared again so we have a new resistent type in her blood work now.

So of course I call my Drs office and receive a call back this afternoon that, yes the denial is in fact true, no recourse to look to the pharmacitical company, and no studies at close universities that I Qualify For.

So we monitor my blood work every six months and try not to cry wolf.  (LOL)

I was in work mode and called my oldest daughter and ask please call the other 2 and let them know.
I think she is taking it much harder than I am.  But on the up side eating my homemade mozrella and have some items planted in the garden.  Have my bean seeds on the table waiting on the cold snap to pass and Spring to peak its head around the corner.

Lots of topic updates

Well the insurance has denied one of the medicines I need, basically the inhibitor medicine.  They say I was on it last year and will not approve it. I will see if the Dr. is able to appeal.  If not I ask the pharamacy if the maker has an approval program and they do.  That will be my next approach.

I was kind of wishing for that a denial so just not to go thru the therapy again.  Just call me scaredy cat.  My third child was born natural (not by choice)  and that was way too much pain for me.

I have been working in my yard, I raked (cleaned the alley way).  Bought 3 blueberry plants, 2 grapes and installed three 4x4's for my trellis system.  Next is to drill holes insert coated wire, tension that wire down.
Oh and found a lone asparagus that must have been planted last year. 
Ordered a dehydrator (just for fun) and my seeds for this year.  I scaled back thinking of the treatment.

And on another note I did buy myself new bra and panties.  Worked out old medical bill payment options.

I suffer bronchitis and a dr visit today cost me $230. I tried home remedies first obvisously the internet is not for the unknowing,  because they didn't work. Now I fight the obvious and the tainted virus.

Which leads me to....I have scheduled a consultation with the Dr. for next Monday. I can't consider treatment if I want to keep my job, and insura nce. If I keep my job and insurance what quality of life does that leave me and for how long, job and life.
I've been looking to the internet for the symptoms i.e. how painful and what the end will be dying from the virus. The funny, well not so funny thing is there seems to be no in depth details on the way I will die, that I can find.
I think in that meeting I need to speak of de pression I have long suffered this due to many many contributing factors.  But one that comes to mind...... "I always say there must have been a horse thief hung from a tall tree in my genological tree. Because I constantly have issues with transportation."
Currently I catch the transit system, am a month behind on my hou se payment. Have medical bills I have not paid currently, hopefully counting on a Federal refund.
But of course I will die, the movie 50/50 comes to mind now as I type this,  I will die. I know what I will die for some is unusual. Do I pay these bills, why do I even consider that, because this is my debt. But I will die.  Should I do something I really really want to do. Like buy myself new panties and bras and new work clothes. But will I need those work clothes........of course I will...or will I.......

I could live 10 more years. I will could get to see my oldest daughter and husband get there farm they dream for. I will  could get to see my son make choices that are responsible. I will could get to see my youngest and her husband birth their first child. I will could get to forfill my bucket list if I had one.

On another subject I follow blogs of self sufficent, I'm a meer speck  (but am learning to better garden, knit, can and cook from scratch [not totally ]) and had I read QC post on use for your old tee shirts I would have never.... never thrown away my tees as well as my childrens tees.  So you can only image my surprise in opening a yarn products email that I have purchased in the past and like... to see this!   if only we had known!  .    

Not so good news

Well I've had six months of feeling great doing task that I've not even thought I had strength for.

But we all have to look at reality.  I went for my six months check up, and the virus has been found again in the blood work.  I was 2 months free of the viral load before completing my treatment. Now six months later its active again.

Before they drew blood the Dr. was speaking with me and I told him that I could NOT go back thru the drug regimen again.  Then I get the results.  I really really thought it would be negative.

Boy life can throw you curves, so you know you will die and a painful death but before that happens what do you really want to do, accomplish, wish to see.

I spoke with my medical assistant and the Dr. wants to schedule a consultation with me.
Right now I'm having to soak in the news.  Not really sure when I will schedule that.

google your name.  you will be surprised how many weblinks have access to your information.     click on privacy and you will normally get a opt out option.

I have finished my drug therapy.  I have no virus in the viral load test.  I will have a six month follow up, then 5 years.

I have my energy back however last week both legs got infected from me not being able to leave the psoriasis alone.  I am now on antibotics and recovering.

I want to thank everyone for prayers.