Cushing's Info

My name is Michelle  , im 42 years old married almost 22 years  have 3 children ( 20/18/14 ) I live in winnipeg manitoba  ( yes where the  mosquitoes will carry you away in the  summer and the winters will make you never want to leave the house )

My adventure started this past November (2010 ) after having this weird abdominal pain for  a few days  ( was thinkng maybe a ulcer ) my husband started to panic  becouse i wasnt gettting better  , he insisted we head to the emerg . Here is where i realy started my rollercaster ride .

my BP was threw the roof as they say and my white blood count is high  and they wanna do some meds  while they decided to keep me for further tests in the morning (white count is still high as of today ) . Morphine made the pain bareable for the  night , and first thing in the morning im sent for an autrasound . After my utrasound im put in the hallway while the tect runs my results to the radiologist , here is where i sit alone in a wheelchair hearing him say in the other room i have a large mass on my right adrenal gland  ( WTH !!! im thinking  ) he then walks past me never making eye contact leaving me there for a orderly to get me back to my bed . My husband is sitting there by my bed when i arrive i whisper to him what i just overheard , he insists on trying to tell me  i must have misunderstood .

Fifteen mins later the dr comes over  tell us just what i heard and follows by we are gonna have to transfer you to another hospital to see a surgeon .. Im shocked and at this moment all i can think about is i need a shower i cant go somewere eles lol , My husband who knows me far to well asks if he can be the me there , they agreee and since we are less then 5 mins from this hosital asks if we can stop at home fast , hey say no problem  .

Now i finally arrive at the 2nd hospital with a million questions , after many hours of just laying in bed  a surgeon comes over  says  well we are not sure the pain is related .. you can see my bp getting higher and higher at this point  ( normally im the calmest person you will ever meet ) says he will be back , few more dr"s pop in and well as im sure you all know  it gets old explaining your story to all of them over and over .

Day 3 i get annoyed  more  still nothing , the surgeon is in  surgery and will see me shortly  ( yah right ) My husband can see i am sooo frustrated and just want to go to my bed  ,  goes and speaks to a dr in hallway  and i leave  agreeing to do the  further tests on outpainent basis ( since they were not doing anything with me there0 , and  still keep insisting they dont  think this pain is releated and not sure what is causing it but the pain doesnt seem sugical at this time )

Fast forward to Dec , i meet with sugeon he is doing a scope to see if its an ulcer . Nope  check that off list all is  looking good . followed by a million blood tests , 24 hour pee tests  ect  Now he writes off  pain and  focus"s on adrenal issue , he is going to take the whole right adrenal gland out since the tumor is over 6.5 centimeters  ( wth !! how cn it be that big , is what im thinking ) he says he doesnt think its cancerous at this time from what tests show but ill know forsure when they remove it and do biopsy .) What is with the " dont think " statments im thinking , I get refered to a endroconologist we need to make sure it is not active , See her on New years eve , first thing she says is .. i belive you may have cushings ( first time i ever heard of this disease ever ) she is very upbeat explaining what we are doing and how life will be better when we get threw this . as she puts it its a marathon not a race and the light at the end of the tunnel is not a train coming at you .

We see eachother everyweek and i start alpha blockers daily  ( my tumor is active ) this is protect my body in surgery she  says so if my adrenal gland and mass leak i dont stroke out as right now i have enough adrenalin for 6 ppl in there . Hey ill do what every you want i say , just please fix this mess ( my mess as i call it is what  is my body atm ) So after many weeks of this alpha blocker my bp is  normal and im now ready for sugery ( the sugeon anticipated we would be doing this sometime early new year ) Enroconologist sends letter to sugeon telling him we are ready now . I dont hear anything from his offie for couple weeks and decide to call over there see what the planned date is . well needless to say i felt as if i was punched in the stomache as his receptionist tells me  sometime in may . OMG !!!! MAY !!!!!   are you kidding me , i feel like crap i have no energy , my joints hurt all the time , the  abdominal pain comes and goes  all the time , the pain spasims in my back are horrible , this cant be happening im thinking  .

so i tell my husband and from what he can make out threw all the crying lol , he insists i call the surgeon and we go see him in person , i agree and make this appoinment , 2 weeks later we head to his office . well my husband is s im sure you all can relate to , annoyed frustrated and scared watching his wife go threw all this . He  kinda takes over  my appointment  asking  why may , can meds be changed  till then so she feels better   ect .. sugeon says we need an additional surgeon in there  at same time and well there scheduals dont meet up till then , meds cant be changed we just have to sit and wait basically . he does acknowledge thou he thought this would have been done sooner and he should have had better communication with my endo . He apoligizes saying to my husband i can understand  your frustration but again i dont think the pain is related . Now my husband looks like he needs alpha blockers as he is now pissed nothing was accomplished . As we walk to the elevator i can see the annoyed look in his eyes and try to assurehim i,ll be ok  , and ask him to please not piss off the person who is going to be holding a knife over me while im alseep lol  he laughs and  holds me and we just laugh .

Now its mid march im having bad pains again and we go back to emerg ( i cant get in to see surgeon he is at another hospital doing surgery and his office tells me what emerg to go to ) here they again tell me doesnt look releated here are pain meds and well you have sugery in may , hopfully that will solve the issues , basiccally have a nice day . I am now at the point ill just live with the pain take the meds and wait till may , what eles can i do ...... so here i sit googling everything and reading these boards and finding comfort that im realy not alone on this journey and one day i will have a normal life , a new normal but it will be a normal life

Michelle

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