Tuesday, January 27, 2009

Deal Or No Deal...

I am in a crappy mood. I need to vent....

I can deal with the 9 tubes of blood taken every month. I can even deal with the actual discomfort I have been in. I can't deal with it affecting my mood.

I can deal with the double or should I say triple fatigue whammy of anemia, end stage renal disease, and sjogrens. I can deal with the weekly injections of procrit. I can't deal with me not even wanting to read a book to my two little boys.

I can deal with joint stiffness. I can deal with when I walk down a hallway.... everyone else walks twice as fast. I can't deal with me being snappy at my two little boys in the morning because mommy is just exhausted.

I can deal with working a 40 hour work week. I can deal with even working a little extra when needed. I just can't deal with it affecting my mood.

Normally, I think I handle the stress of it well. Yes, there are times I am so tired I spend a good deal just sleeping. I don't need comments like "Get out of the bed", "Do I need to take you to the hospital", or the best one....."Are you dying"?

So hear this people......I THINK I DO PRETTY DAMN GOOD CONSIDERING WHAT DECK OF CARDS I HOLD. YES, I may be in a slump but I am sure my bloodwork I got today will back that up. I am hoping that the numbers will continue to be improving. I know that my anemia is still out of wack and hopefully it will get fixed this month....until then I am going to take that extra breath in the morning and put on my patience hat for my two little beautiful boys.


Francine said...

Oh Vicky,
I am so sorry about the moods issue. They are uncontrollable, this I know. No one understands that. My mood went from 0 to 95% improvement when I had my ovaries & uterus removed. I am having A LOT dryness in my eyes & I do not know yet if it is from the removal or the weather/heaters. I do not have all the health problems that you have. I take my aloe drink, liquid aloe vitamins and liquid calcium. They do improve my health. My story is on the tarrah.com/francinedenton. I will keep praying and at any time I am here for you.

Pam said...

Vicky, I understand where you're coming from. Most people don't realize what it's like to deal with any of these issues on a day to day basis and that's because we choose not to complain and bellyache about it. To people on the outside, they see us dealing with life on a day to day basis but because we're not whining about anything in the back of their minds they believe it must not be that bad. To us, we try so hard on a daily basis to muddle through things but somedays it's just too much and like you said, "you need to vent." After the venting is over you feel somewhat better but then deal with the guilt of sharing. Hang in there. Things will get better and remember "This too shall pass." Still praying for you.

Julia said...

Hi Vicky,

You are my hero, girl!! I can't imagine working a 40+ hour weekday and then keep up with all your other obligations while dealing with overwhelming health problems. You deserve those days when you need to vent.

You also need to grieve - for the changes in your health, for the lifestyle changes that you've been forced to me, and also for the uncertainty that accompanies upcoming enormous events such as a potential kidney transplant. Please me sure to take all the time you need to work through those stages of grief. I'm so sorry times are tough for you right now.

The next time someone tells you to get out of bed - tell them that you're under Nurse Julia's direct orders to stay put. Until YOU feel like getting up.

For me, my mood is directly related to my energy levels. When my energy bottoms out, I not only feel crabby, I get all weepy - which only makes me crabbier because I don't make many tears!

BTW, thanks for the really intriguing question about anti-ssa/ssb antibody lab results. I'm still researching that one. I'm sure that you've noticed that there's not a lot of data out there on that one. I'm going to bring it up when I visit my dr. next, too.

Hugs and more hugs!

Vicky said...

Thank you! I do feel better after the vent session and I do have a good support system around me, but at times I feel like "they" get so frustrated with me and really...I can't blame them. I think what is the worst is the fatigue....it affects not only me, but all my loved ones and friends as well. I KNOW things will get better. It just seems like the past year and especially the past several months have been rough. I have an appointment today with my HR department to get the FMLA signed and talk short term disability JUST IN CASE I NEED IT...maybe for a transplant?? :)

Anonymous said...

I know I can't empathize with you about your illness, but I am here for you if you need me. I know you feel bad about being inpatient with your boys, but just know and remember that thats not you, thats your illness. They may be too young to understand right now, but in time they will/ You are one of the strongest people I know and I can't wait until you get your transplant and start feeling better. We'll have to go fly somewhere exciting. Love you bunches *your partner in crime and silliness*