grrrrrrrr and hmmmmmpffff

i found this post in my drafts. it was written months and months ago but it still sums up how i feel. i have had family members repeat things like this to me and am so saddened that these folks used to be people i considered loving and my family.

warning…I am on a tangent today so if you don’t want to hear it…it’s best to jump to another blog post:)

frustration! complete! frustration!

my cute boss kimi had a client in her chair the other day at work. and this client has a forty five year old daughter with LAM. has had it 10years, is a single mom of a little girl from china whom she adopted the year after she was diagnosed. did I mention there has never been a dad? this amazing woman was given a death sentence and still adopted by herself! AMAZING! the client was telling kimi and I how her daughter isn’t doing good. she has always been a fighter, a business woman, a non-complainer and one tough cookie. kimi said that sounds like bri:) (not too sure bout that but I digress)…the client was getting misty eyed telling kimi how she is having to go on disability and is on full time oxygen. both things that are just the norm for a lam patient. kimi was SHOCKED. it’s not that she didn’t believe me but it’s hard to hear about someone being that bad when the person you know who has it seems so healthy and far away from that! poor kimi! what is said below has nothing to do with my adorable boss whom i love dearly and who understands me completely!

the frustration in all of this for me is that no matter how many times I tell someone I have this, I never feel like anyone really understands. I purposely tried to delete all pictures of me when I've been sick and am really making an effort of not talking about it. but just for a moment…I want to be understood… I don’t do anything for attention with lam, I don’t over exaggerate, stretch the truth, try to receive pity or directly try to get out of something because of this. I am a warrior, I get up every morning and do my best to live with what I have been given. so if you think I'm doing any of the above….lose my number, don’t be my friend, don’t consider us family and certainly don’t be two-faced and tell me you get it and then talk behind my back like this is some disease I asked for. like anyone wants to be given what I have to live with! don’t tell me you love me and you know how hard it is when you think it’s not tough and you think I'm ridiculous!

anemic

well its not colon cancer...thank heavens! but they still don't know what is causing this stinkin anemia and these pills are the worst!!! sick sick sick. iron does yucky things to your body.

why wont they listen????

the doctors and nurses, techs and specialists all think im crazy! they think im a hypochondriac, a drug addict and more. so today i had to have a MRI of my brain. a week ago i was paying bills and suddenly could not read anything. i could see all the words on the screen. i even recognized most of them but was unable to sound them out. i freaked out to say the least. but after an hour or so i was OK. i could read again! i had a headache for 8 hours but other than that no problem. but the docs think i could have an aneurysm or had a stroke. ha ha like i need more drama. anyway back to the MRI. i tell the doc that i have terrible veins and that good luck getting an IV in. he tells me he is a pro at this after 30 years not to worry. well 2 pokes later with me crying no good needle in the arm. he says he cant understand it and calls in some head nurse to poke me. she gets it in but not before im totally crying and in pain. i mean do they think im making this up. hey you cant get an iv in. like i want a challenge or something. IM NOT A PIN CUSHION!!!! I WANT A NEW BODY .......MINE IS BROKEN!! and can the new body come with some boobs?

that weird feeling

well it has been officially 4 1/2 months since i have gone to the hospital. wow it feels good to say that! for the most part im feeling really good. i am exercising a lot and feeling very strong! the lungs are up and knock on wood- NO PROBLEMS RIGHT NOW. i do have these weird feelings, pain and lots of discomfort from day to day. not sure what is going on but they always seem to work their way out. i mean i guess im supposed to feel weird --- your lungs are not supposed to be glued to your ribs!!! it is increasingly difficult to not be able to do the activities i love so much. twice in the last week or so i have been asked to join a hockey team and i kickboxing group. surprised that these people think i would be good at these :) but saddened to know i could no more do those than fly to the moon. i even got wore out when my sis and i went dancing last night. something i could have done a year ago for hours and not even thought twice. so let me ask how do you have so many things taken away and still feel like you have so much? it is a difficult thing to do.

im fine

i feel like i need a sign that reads----IM FINE TODAY_ DONT ASK! i mean really it is no ones fault. people dont know what to say or worse, how to act. do we treat her like she is dying or like she is our normal friend bri? does she really ever feel good or do we just ask anyway? well for the update- you dont have to ask and you dont have to be politacally correct. heaven knows i never am. you wont hurt my feelings if you act like im fine. and for the record as far as being in pain... i hurt everyday but only a dull pain and i really only hurt hurt when im in the hospital and then im so looped on drugs i would not remember if you asked anyway. or for that matter who you are at all.

my drainage tubes this summer

but i was happy to be home!

anger sadness and grieving

how can you be told that you have a disease that someday will kill you and that I'm sorry but there is nothing we can do for you? how can you spend every three months in the hospital and find out that you almost died a few months ago? how can you have this all happen and not have it change your life? how can you carry on in that same happy go lucky fashion you have? well i will tell you what ---you can't do it, things change and people change and you have to find the new you. a happy you, with disease and heart ache- but without letting anyone know any difference! and for those of you who love me---it takes a little time!