my lucky bad day

September 24, 2015 at 5:02 am (Uncategorized) (, , , , , , , , , )

at the end of my day yesterday i sat in our double recliner, feet up and a cozy throw on my legs.  i couldn’t help but smile.  it was a particularly tough day physically.  i had some errands to run, angie and i wanted to spend some time together so off we go.

as of late my physical symptoms have escalated.  this comes as no surprise and yet we are somehow, briefly surprised and even confused.  walking 15-20 feet can leave me breathless and with chest pain.  during the day we accommodated my failing heart the best we could.  our last stop i could feel my heart struggling to keep up with my mind. we laughed and made bad jokes that might meet with disapproval from others.  this time has been so precious for us both.

me: i am so lucky.

her: why do you say that you’re lucky?

me: just think about it, i am here with you, i have a loving husband and friends.  i have lived my life the way i wanted, having adventures others might only dream of.

at this point i talked about even the most mundane pleasures, having a washer and dryer,  i hated going to the laundrymat!  to have air conditioning during these hot summer days, central heat during the winter are gifts i never take for granted.  to have the last job be the job of my dreams.  surrounded by family, friends and cats that i adore make me one of the luckiest women alive.

each day when i wake i take a moment to think about the many wonderful days i have had.  there may not be so many ahead of me but that matters little to me now.  if i shed a tear now it is for my loved ones who will hurt when i leave.  until that last breathe and perhaps beyond i will know that i am one lucky woman.  i think of that little boy washing up on the beach and i cry for him and his loved ones.  his mother and brother also died at that time.  to think of their suffering and the young lives not lived to their fullest.  too many take this offering called life for granted.  they don’t fully appreciate what they have been given.  i do not judge them, i just feel so sorry for them.  we all deserve to love our life and to feel as though we are lucky to have this life.

angie and chris in yosemite

angie and chris in yosemite

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frog jumping part deux

September 7, 2015 at 9:49 pm (Uncategorized)

our new house sits out in an area that, although it is only blocks from our other house, had been left to go wild.  when we bought the other house the economy was just months from a big down turn in the economy. as a result, the land where this house sits, this property was allowed to go back to nature.

my man is a nature lover.  my sister and i love nature.  we love the earth and do what we can to honor her.  however, my sister and i draw a line when it comes to bugs and spiders that look like they could attack us.  we do not believe these critters belong inside or on the door which we feel suggests their intent to enter the house.  he uses a glass inverted to pick up intruders only to set them free outside the door.  we use magazines (not to be read), newspapers and on rare occasions a shoe.

this is relevant, trust me, to this story.  as i said in the last post ang and i were discussing which frog would cross the finish line first.  out of the blue she says it’s going to be a spider bite!  i said it would be a brown recluse.  so that is how it all ends my friends, i get bitten by a brown recluse spider,

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lupus?? calabassis(?) frog jumping contest

September 7, 2015 at 2:56 am (Uncategorized) (, , , , , , , , , )

froghurrayanimatethe following message came from someone who works with my new primary care doctor.

Hello Sandra, It looks like Tanya has already scheduled your appointment with Dr. Hanley? The ANA is the preliminary blood test that we use to check for a autoimmune disease such as Lupus. This is the reason that we referred you to Rheumatology. We will be more than happy to go over this in more detail when you come for your appointment with Dr. Hanley if you have any additional questions. THANKS and have a great day!

so now i could have lupus?? it might just be the rheumatoid arthritis.  well not likely but i like to think that may be it.  angie looked it up and really there is nothing new that i am not already experiencing.  that is the good news for me i think.

he has gone to bed and now we have our girl time.  we have certain shows we watch that he wouldn’t enjoy.  it is our time to just hang and talk smack frankly.  we also just have this time when we are together and no words are needed.  one of the best things is we have a similar sense of humor.  we know that we would never say these things to others as they might not understand that we could laugh at some of the things that make us cry laughing so hard.

angie asked me about my pain and what happens when i am unable to wake enough to get up.  she wants to understand, she came to our room more than once trying to stir me.  one time she read me an article about washing blue jeans.  her ex boyfriend would tell her he didn’t need to wash his jeans.  my own man has baffled me with this argument for not washing his jeans as often as i would think necessary.  he is otherwise a clean man and dresses very well when leaving the house.  i can remember basic facts of this article, i can remember her voice.  i love her voice! it is so expressive and usually has this hint of laughter just waiting to break out.

i tell her briefly what it is like to lay there and drift off when there is a part of me that screams at this body to respond.  get up….. get moving…. the day is passing and you are not participating.

me- you know what i really think about this new problem? it is much like the frog jumping contest they have in california each year.  you know they line these frogs up and one may start jumping straight ahead while the others may go off in other directions or just sit still and make no move.  well those frogs are my diseases or disorders.  one is congestive heart failure, another is kidney failure and so on with the liver failure, internal bleeding and now we add in lupus.  one of them is going to cross the line and kill me.  we were laughing and imitating those frogs!  then i said – you know i am so relieved to have you here and be able to laugh about this stuff.  as we are laughing she says “yeah, us and our demented sense of humor.”

well i would rather have a demented sense of humor than to be crying over this journey.  now we just have to decide which frog we are going to bet on.  anyone want to place a bet?

as the office worker said in her message, Thanks and have a great day!

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36%

September 3, 2015 at 10:11 pm (Uncategorized) (, , , , , , , )

we (younger sister and i) are talking about long-term relationships.

me- can you believe we have been married 20 years??? well together for 23

her- it doesn’t seem that long.  can you believe i stayed with …. (he who will be unnamed) for so long?

me- i stayed married to the first one for 10 yrs and got divorced right around that 10 year mark.  the second one he died just before our 10 mark.  it never occurred to me that i would be with anyone for that long.  wowow, it really has been over 20 years.  i kind of worried if someone was married for too long they would run out of things to say to each other.

she- oh i know, i’ve seen those couples! can you imagine?

me- that would be me, one day just say “that’s it, that’s all i got.”  can you imagine saying that to someone??  what would he say if i just looked at him and said “i got nothing for you.”

at this point we are laughing and moving on to other topics as we often do.  we all laugh more since she has arrived.  the cats adore her, well ling tolerates her but then she barely tolerates me:)  she is part of the family and fits well with all concerned.  our friends love her and she is making new friends each day.  all though we are all here together it works great for her to have the rooms upstairs and we are downstairs.  we share the downstairs actually, of course the living room, dining and kitchen.

she comes in to wake me up and much like when she was a baby she can make me smile the moment i know she is there.  unlike my sweetie, she is more persistent when she knows i really want to be up and going.  this morning she brought the time magazine i bought with the article on donald trump.  after a good laugh at his expense, i was ready and able to get in the shower and she was off doing whatever it is she does:)

she has taken me to hair appointments, nails, shopping and of course the ever-present doctor appointments.  we have had some conversations about my feelings of no hospital.  actually she was completely supportive of me not going in last week.  at first she had questions and thought if it would make me better then i should go in.  when we got down to it and how going in will not make me better, it will just make the doctors feel better.  by the way it is now in my permanent record that i “refused to go to the e.r.”  ask me if i care! i find it funny but understand they are trying to cover themselves and avoid a lawsuit.  now she is supportive and understands that i will not die in a hospital if it is at all avoidable.

not that she let’s me slide on blood work! actually she is a little nag about those things.  at my last appointment with the nephrologist he gave me lots of numbers and most of them i remember what they mean.  just before leaving his office i asked for the bottom line, what is my kidney function percentage?  he is slow to look up and when he does he clearly says 36%.  it takes me a moment before i ask, so i know some organs don’t function at 100% as we age so to put this in perspective what percentage should i be at?  again he takes a moment before saying “they should be high 90’s to 100”

even at 36% i am not in need of dialysis yet.  they did test and know i have rheumatoid arthritis, so another doctor.  for so many months i went without a doctor.  we have all experienced that bubble when we first go in and suddenly we can’t get off this ride.  i am getting ready to say “i got nothing for ya.”  the last few times i have gone in the well was dry.  i am tempted to say, i already told you everything so ……  unless you have something new?  oh wait i did that and they are sending me to a rhuematologist. all i know is i am over this getting caught up with the new doctor.

my computer battery is almost dead so i guess this is all for now.  life is good regardless of what percentage my kidneys work at, life is good and maybe in part because my kidneys work at 36%.  each day i know that i am blessed to be breathing, laughing and loving.

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