Update

I'm so sorry. I firmly believe that a person can only have one disease at a time. To bad our bodies don't listen. I hope your medical crew can get a plan into place. Medical wait time is the worst.

I'm still inpatient with a nasty infection. It will be 2 weeks Thursday and I miss my little man deeply. Thankfully I'm at home so he comes up every few days. He was awfully cute today. Travel soccer tryouts and guitar lesson. I could hear him slipping and slidding down the hall in his cleats and then he plopped down on my bed and played "Let it Be". Love my little guy, and the mud he leaves behind. This latest stay has the drs scratching their heads and mentioning the NIH. Lots a crazy symptoms that just don't connect.

Where are you at your steroid dose? Right now I'm getting IV solumedrol 40mg every 6hrs. At admission I was on 50mg of prednisone. Like you, pred is a life/death med. I just hate it so much.

Maybe you and I have some weird hybrid disease. We could be famous:)

I really hope they can get your pain under control. My pain dr stopped by today for "moral support". Love him. He said he'll be by first thing in the morning. I can only imagine how frustrated you must be. I'm sitting here looking at the clock until rounds and new ideas.

Please know that I'm thinking about you. Eventually somethings got to give :(

Hi Barbara,

Sorry about the new diagnosis. Hope the doctor calls your with some good news tomorrow. I also hope the radiation helps you.
Hope you can get some relieve with you pain soon.

Take Care

UA

Barbara and Purgatory, you both are going through so much, i wish there was something I could do, but I will continue to keep you in my prayers and am sending both of you gentle cyber hugs.

Hi Barbara I'm sorry I'm writing so many days after you posted your post. I wanted you to know that I'm so sorry that you have the leukemia. You will be in my prayers. I also hope the doctors can get your pain levels under better control. Take care of yourself best you can.

love and hugs
Loretta

Was glad to see your update and your welcome.

I think I didn't get serious Mother's Day notice until they had kids of their own. Until then no matter how old they are they still cling to their roles of being kids and giving you cards they bought solely by the pic on the front and never even read the inside! ! Lol



Thanks for the update and hope you got some sleep.

You seem to be so positive! Where can I get some of that?? I'm so sorry about your new diagnosis but leukemia is so treatable now! My mom was completely cured and lived 14 healthy years. Your positive attitude will be such a help! God bless!

Hi Vickie, Also, Care, and Chart,

Thank you for your kind posts. It's always nice to know that you have friends that "get it" when you are in pain or unwell. I mean my hubby and I will celebrate our 28th wedding anniversary on June 8th, he knows me really well by now. however, he doesn't get it most days and it's frustrating,

He takes wonderful care of my physical needs, he cooks our meals, and does the floors in the house. He has NO expectations of me, but I have to say I'm feeling really lonely. He's from a family that doesn't express their feelings a lot. I can say in 28 years I've only heard him tell his Mom he loves her one time.

I'm from a family that always hugs you when they see you and they tell you they love you, as you never know, it may be the last time you see them. My in-laws spent our first 20 years of marriage shaking my hand when seeing me. I know over all they are in the dark about my health. They never ask to speak to me, and when they ask how I am, hubby says I'm ok.

Care I see you are a new member and wanted to say welcome. I'm sorry about your Mom and her leukemia, but I'm glad she was cured and had lived 14 healthy years.

It may seem I'm positive but trust me I have days where I'm full of dispare. Not feeling the best tonight actually, my Dr didn't have the best of news for me. He printed out a bunch of reading on the type of leukemia I have and explained things to me and said to review it and then we would will talk. He did tell me that there isn't a cure for the type of leukemia I have. That most patients with this type live 10-12 years, depending on how bad their symptoms are. Then my autoimmune disease complicates things greatly.

He also said that my hemoglobin is very low it's 8.3. I have a threshold of 9.0, if I'm below that I get blood. Well I'm in need of blood, the catch tho is I can't get it till Friday morning. My daughter is ready to come home from college and I have to go and pick up her first load of stuff tomorrow morning. Plus the Chemo treatment room is booked for tomorrow. So I'm faced with a drive feeling really under the weather.

After I get my blood Friday, I'll head back out to her college to get the last of her stuff and her. Her last final is Friday 1-3 pm. When we took her to school last August it took my jeep full and hubby's car full and then me going back the next day with the carpet. Not sure if hubby can go on Friday, hence me making two trips.

Then finally, hubby was told yesterday that it looks like he will start his furlow starting in July thru Sept. Which means he must take one day a week off w/o pay. They CAN NOT use any vacation to cover those days off period. Even tho the government owes him over six weeks of vacation and sick leave they can't use it for the furlow. I'm stressing Big time now, which isn't good for my lupus or pain. This will be a big pay decrease for us.

Well I'm feeling rough so I'm off to bed. Will post more about what my Drs had to say after things settle down here. Thanks all for being there. Hope you all have a good night and low pain levels tomorrow.

Hugs,
Barbara

Hey Barbara,

I have the same exact thresh hold on my anemia... below 9 and I start spacing out, dizzy, heart racing. I just had a transfusion a couple of weeks ago.... I know what 8.3 feels like - and I'm sorry you feel so lousy! Hopefully, Friday gets here quickly.

Take good care --Tina

Hey WB,

Thanks for your well wishes and prayers I appreciate them. Yes, my parents were very much into showing me that they love me. My parents adopted me when I was 3 months old. My mother was 45 when they brought me into their home.

I do have an older sister, who I'm not real close to. She's 12 years older than me, she was my adoptive mother's 1st cousin who came to live with them. Then her brother also came to live with them, so I have a brother too he's 8 years older than me. Neither one of them live near me. Sister is in the Midwest, brother is in California.

I can say we don't talk often, last time I spoke with my sister was at Thanksgiving, and my brother was on his birthday in February. The excuse I get from my brother is he doesn't stay in contact with me is that he doesn't know what to say to me, because I'm so sick. My sister just plain and simple isn't close, I was her flower girl at age 5. She married and moved out at age 17.

Since, I was 3 months old I grew up thinking that they were my siblings and parents. I wasn't told I was adopted until I was 17. Took me completely by surprise. The hardest thing to accept was that everyone in my family and neighborhood knew about me. My mother could never have children, and she never wanted me to know I was adopted.

My mother passed away in 1998 from lung cancer, and my dad passed in 2011 of stomach cancer. I really miss them, I could always call them, especially my dad and I would feel so much better. I truly miss not hearing those special words I love you from them.

Anyway, that's kinda why I'm feeling so blue at this time. I've been given news that's not good and I feel alone in dealing with it right now. Knowing, my HW family is praying for me though helps.

Hugs,
Barbara

I certainly understand that feeling Barbara. I lost both my parents,my Mom unexpectedly in 98 as well and I was 6 months into a very high risk pregnancy and 5 months from starting down this road to chronic pain.

Lost my Dad a year and 2 months later from lung cancer. It's been a lonely road without them. All these years later I have moments when I reach for the phone thinking "this is something I need to run by Mom"

Its certainly a life changing moment to realize the people who raised you nurtured you and loved and supported you unconditionally all your life are outside your reach.

I have my children and family but the place in my life where my parents resided will remain forever empty and painful.

I many days think if I had one moment more with them I would tell them how very sad I am that my kids and grandkids wont know their boundless love. Then I think " yes they will" through all that they gave and taught me. I'm truly all that they were by the love and support they instilled in my life.

I think they're proud wherever they are just as yours must be. I like many here are awed by your strength and compassion for others and no matter what life's throwing at you Barbara you always seem to find a moment to give to others.

That says a lot about the folks who raised you where I come from.

Know that you've done them proud.

Hugs

Vicki thank for your very kind words. I'm sorry that you've lost your parents too. It's such a heart breaker when they leave us. I was really upset about my Dad.

Because my health has been so bad as of late, he refused to allow me to come and stay with him at his home. He was so worried I'd get sick traveling to his home town. So when he went into the hospice ward on Monday he said no need to come. On Wednesday when the PET scan showed he was full of cancer, I bought an airline ticket.

My flight was due to arrive on Saturday morning. As I use oxygen the airlines have special forms that must be filled out by your Dr to fly. Well I spoke with my step Mom on Thursday, I'd called his hospital room he had visitors so I didn't speak to him. He passed away at 7:30am Friday May 27, 2011. It had been 2 years since I'd last seen him, and I didn't get to speak with him the day before he passed.

My Dad didn't want a viewing so he was taken directly from the hospital to the funeral home and was cremated that day. It's been hard to settle it, I didn't get to say goodbye, unlike with my Mom. I was at her bedside holding her hand as she took her final breath. Dad always swore he'd never allow that with him, he'd not put me thru that. My oncologist suggested that he knew I was coming and decided to pass on before I could get there.

Of course, the one thing my Dad was worried about did happen. After traveling home for his funeral, when I got home, I became deathly ill. Nearly died of sepsis, he would have died if he had been alive when it happened. Still it's hard I don't have the closure I need.

Thanks for your support Vicki I appreciate it. I hope you have a good night and aren't up to late thru the night. May you have a low pain day.

Hugs,
Barbara

Barbara,

Simply put, lol.... I really just want to say that I continue to hold you in my prayers! Know that we are here and pulling for you, Barbara :)

Love, Tina