I've taken a turn for the worse

Hi Everyone:

I know I haven't been around to much lately. I had to take a small break and now I'm back to try to offer support to everyone. I'm sorry that I haven't responded to many of the posts. I'm totally wiped out. I saw my Internist today and she's very worried about my condition. I was in the ER a week ago to for Chest Pains and Pressure. They determined that I had inflammation around my lung. The gave me a IV dose of 120mg solumedrol.

Today, when I saw my Dr. she was very worried, she said I'm looking gray. She said that my CRP is almost 3 times the normal amount. She said that my size of my red blood cells are so huge that she's frightened for me. She also commented that my WBC is only 2.3 and I need to stay away from large crowds. That when people come into my home, they should wash their hands and avoid touching me. With my immune system so low, they prefer to keep me at home, as I most likely would pick up an infection in the hospital.

My Internist and Rheumy had a long discussion and my Rheumy said that there is no possible way that I could be taken off my meds to treat my lupus. He said that they would be doing a "HUGE" disservice to me. My Internist was thinking maybe I should have a drug holiday.

My Dr. told me to return to the clinic if I worsen over the next few days. Past history has shown when I'm "gray" I'm about to become very very ill. I'm just so frustrated they don't know what to do for me. She thinks the MDS is advancing and she was going to call my Hem/Onc this afternoon.

Anyway, I want to welcome all the new folks and I'll attempt to keep up with responding to posts. I know I'm really out of sorts tonight, but hopefully tomorrow I'll be able to post. Thanks for being here for me and I've really missed you all.

Love,
Barb

I am sending you positive thoughts and energy. Drink warm tea and rest. Don't worry about the rest of us, just take care of yourself.

(((((Barb)))))

I've been out of town and out of touch and just poked my head in for a minute and was dismayed to read your post. I'm so sorry and so worried about you. Please let us know what the oncologist has to say about your MDS. I do not want you to get any sicker! I'll try to give you a call tomorrow.

(((Hugs)))

Pat

Barbara, please take it easy and try to get the rest you need. You are in my thoughts and prayers. (((BARBARA)))

Connie

((((barb))), Life sucks  and than ya get sicker. I'm sorry I wasn't any help or comfort to you yesterday. I guess I'm kind of wrapped up in this appt today. I'm glad you decided to come here and talk to folks who at least to some degree understand what you are going through. Don't you just want to go down to the lake and pick up some rocks and skip them accrossed the water so hard and long until you are so sore and tired you just collapse? I guess that's just how I get when I feeel like I have to fight a battle with my hands tied behind my back. I do feel your frustration. I'll call ya tonight when I get home.

love ya

carol 

Hi Rosie, Redrose, Judy, Pat, Marji, Connie, Donna, Carol, Ginny:

Thanks everyone for your thoughts, prayers, and positive energy. I really appreciate them, it helps me to know that I have you all on my side.

Ginny, I have a B12 problem and I give myself a B12 shot weekly. I hope that you're not having problems with your B12. I thought I should mention to you that our immuno suppression drugs can cause our red blood cell size to be bigger. It's something that the doctors expect up to a certain size. Once it crosses that line then there are ?'s as to why mines so high. Mine have always been high but now it's taken a huge jump and she's uncertain as to why. I hope that yours is just from the imuran that you take and nothing more than that. I'm wishing you well and praying for you.

I managed to get a bit of food down with my morning meds. My nausea seems better since I've stopped taking the viagra. I'll be waiting to see how the next week goes w/o the medication. I hope each and everyone of you are having a good day. Please know that you're all in my prayers and thoughts.

Love,
Barb

((((((((((((((((((Barbara Lee)))))))))))))my prayers are with you!

Hey Barb,

I am new and can't say much, because I don't know much.  I am really sorry though that these things are so bad for you, and I apologize for taking so long to respond.

Many prayers sent your way

Hester

Hi Barb, Sorry you've got a rash on top of everything else. I hate that darn lupus rash, especially if I have to go out and mingle with the world! Hope it calms down soon. (((Barb)))

Hi Barb, I guess we kept missing each other on the phone the past couple of days. I'm sorry about the mix up with your dr. I'll give you a call tomorrow. Hopfully I will get some sleep tonight and not be a zombie tomorrow.

love and prayers hun

carol

Barb,

I am so sorry for the serious problems with your health that you must now deal with. I will keep you in my prayers. Can you feel those prayers coming your way?

Love ya!

Barb,

I understand how you feel right now. I am not feeling very hot myself. I will say this, as I recall you have at least one child- my brain doesn't work right so you may not or may have more- and a husband who love and need you. For their sakes you need to fight as long as you can. I know with cancer at some point you either need a remission or permission to let go but you asked to be reminded why you need to keep going so that is what I plan to do here. Having you around, no matter how sick is infinately better for your loved ones than you being gone. I know from experience. My grandpa died from cancer and for his sake I was relieved but the truth is had he been able to fight for longer I would have been more than happy. He decided to give up after 6 months of treatment. It destroyed me, he was the closest thing I had to a father and his dying was a huge blow. His wife took it hard too. We all wished he had been strong enough metally to keep fighting.

Now I know darned good and well that despite your down days you are very strong mentally. So fight as long as you can and as long as there is reason to. If the doctors ever say that fighting is no longer something you should do from a medical stand point- as in we want to make you as comfortable as possible for what time you have left kind of talk then you can consider packing the medication in. Until that day comes and you decide to lay down and give up then you have to keep fighting. Your family will be greatful when the time comes that they do lose you for every second your fighting buys them with you.

I hope this helps.

(((((((( Barbara )))))))) Of course you are sick of the med buffet. Ugh!! *sigh* I just wish you had doctors that you had more confidence in. I just hate it that our military families aren't getting better health care. I know some are getting great care. My brothers' doctors are Cleveland VA Hospital and they seem to get good care there with some complicated issues. One brother is gone now . . . but the other is at the VA hospital several times a month for doctor visits etc. They've been really attentive there. I just wish you were getting better care. Hang in there sweetie . . . I think those docs come and go. . . a better one could be yours tomorrow. Use your limited energy to make really good notes to take with you to your appointments. Allow your voice to be heard through your typed Doctor lists. Be very specific about what you want out of each visit. Don't be a door mat and don't be a victim. I hope you feel better soon. Blessings!