Okie & Barb???

Barb was just here on Thursday (the 13th), but Okie hasn't been here since the 2ond (over 2 wks). If anyone has news (and has permission to let us in on it) please let us know!

I really hope they are okay.

Hi Amy,Lynnwood,redrose,Donna, Pat, Thanks for checking up. We are hanging in there. Barb took nakita and friends on a last hurah before school starts back up. They went to the beach and she stayed in the motel room for the most part. I won't tell ya all about it I'm sure she will be on in a day or two. They are driving back as we speak.

I am very sore. My ***** doctor including my rheumy won't give me my plaquenil. He said the plaq. (not having it) would not make my joints sore and me tired. Ya right. But he did say if I want to come into his office he will be more than happy to give me a shot in my shoulder. I'm thinking WHY? if I am not in pain which he blames on my lung problems then why would I need shots in my shoulder but not plaq. Does that make sense? steroid shots yes, plaq, no? I can't lift my right arm and now I am noticing the glands going from my shoulders on angle towards my breast are becoming very sensitive to the touch. That is new for me. I walk with a limp because my ankle joint is becoming sore. They have all confrenced with my transplant team that every dr is afraid of or something. The transplant team wants me off all pred,plaq,vicodin,xanax,. because it will make their life easier. They have told me that they want to wait for possibly 2 years until the need outweighs the risk. The transplant doctor wants everyone on my support team to show up on the 10th at 10 am in oklahoma city for a conference with my dr. My question is WHY? 2 years but they want them there in 3 weeks. that's a 2 1/2 hour drive to put about 14 people in this situation for something that may or may not happen 2 years from now.

Right now I am going crazy trying to determine if I want to live in pain and jump through hoops with these doctors or or spend what ever time I have living without pain. There is no expiration date on my foot as they say.

I've been praying for answers that havn't come yet I'm running out of time. If I don't  show up in 3 weeks they will just write me off. But I'm so tired I'm not sure I care. balancing quality and quantity. I just dont know.

Any is we have any wise guru's out there that have the answers blowing in the wind please feel free to share.

again thank you all for caring and I am so sorry I just can't be here but yes I do try to check up on my family here. Oh yeah not to mention my computer crashed it's in the shop so I am on my SIL's They have a few but I really don't like leaving my footprint on their computer. Sometimes I am just a private person like that.

love you guys you are in my thoughts and prayers.

Hi Amy:

Thanks for asking about me I appreciate it.  As Carol said I took my daughter and a friend to Ocean City, Md for a few days.  I spent most of my time in my hotel bed.  The girls were allowed to come and go as they pleased basically.  I've been under an a lot of stress lately.  It looks like Nikita has MCTD and fibro, we also found out she has a heart defect that may require open heart surgery.  I'm battleing her Rheumy and have requested a second opinion from a different Peds Rheumy.  I know taking her to the beach probably wasn't the best of idea, but the girls mostly stayed in the indoor pool and we'd only go to the boardwalk after the sun went down.  Nikita was really good about pushing me in my wheelchair, and the girls didn't seem to mind room service.  I'm not sure whats gonna happen with my daughter, I did manage to get them to give her some plaquenil, elavil, and tramadol for really bad pain days.  I'm not sure how she'll do when school starts on the 31st.  Time will only tell.

As for me the remicade isn't doing a darn thing for my RA.  I'm going to have 2 more remicade treatments and if we see no improvemennt then my Rheumy will try Retuxian again.  My lupus and Fibro are flaring and I'm taking 40 mg of pred a day and it's causing serious myopathy for me.  I can barely step up the one step on the front porch to get into the house.  The Rheumy said we've got to get the pred down it's causing me serious issues.  Looks like I'll be starting a new heart medication for the pericarditis but not until the 1st of Sept.  I need a new EKG this medication can have some serious side effects.  As for my blood cancer it is worsening and my anemia is getting worse.  I flat out asked if we could go ahead with a transplant and they said NO, they said they felt I stood about a 75% chance of dying from it at this time.  That it would be best that we continue to wait until we really are backed into a wall and have to do it.  I'm having a hard time getting them to understand I have ZERO quality of life, I'm tired of hearing we don't know what to do for you.  I understand they're trying to keep me comfortable as much as possible, but honestly EVERYDAY is a bad day.  My days are based on bad and really bad days.  I'm lonely, sad, mad and fed up with things and I really don't know why I continue to fight to live.  I'm sorry I've not been around to much it's just I feel like a HUGE burden to all and right now I can't carry anyone else.  I pray for you all here and I think of you often and I love you all, you're my family.  I just can't keep dumping on you all.  I lurk and read so I know how most of you are doing.  Maybe I'll have a bit more energy soon and will be back to support you all.  Please take care and know I'm thinking of you all.

Hugs,

Barb

carol and barb I am so sorry you are having a hard time. I wish I could wrap you both in a quilt and offer you a cuppa. *gentle hugs*

Carol and Barb,

I've been so busy with my granddaughters this summer that I've been neglecting you guys. It's just awful knowing how bad you both are feeling these days and I pray for miracles for both of you. And for Nikkita. What a nightmare that is for you Barb.

Bless you both,

Love,

Pat

((((Carol & Barb))))) gosh I'm so sorry you all have been having trouble. Barb, I wish you were near Moffitt in Tampa, they are so good. Even just for another possible plan. It just seems like they do the same things, and seem surprised when they get the same results. And I'm so sorry to hear about Nikita having all that stuff going on, the stress has got to be bad. I do hope you can rest and let go some, I know being mothers its next to impossible. Especially when you have to fight with doctors. The logic on the transplant seems backwards, it sounds like they care more about covering themselves legally than saving your life, to put it bluntly. If they wait until you have "nothing to lose" so to speak, at your absolute worst, your survival odds are much slimmer, but they have less liability if something would occur. It sounds like they aren't really confident with their own abilities. Can you get to Mayo or Cleveland Clinic or somewhere where they focus on survival rates not liability and "patient first"? If we get health care reform, it may be harder to get what you need. I think your husband is going to need to fight for you on this, along with you. You know what you need deep down and what you can handle. You need to go to a place like Moffitt in Tampa that does so many of these things in all different situations and prides themselves in being able to handle challenges. Is there a Cancer Treatment Center near you? Can you get a patient advocate to help you? Maybe you can email Mayo JAX and contact a doc there and get some advice on what they could do if you were there, or what they would do. U of Penn does a lot of liver transplants, I don't know what ese they do and how far away they are. It just seems you should have some control over this. I really think you may need to get a third party patient advocate. Also, the cancer foundation often calls doctors and "educates" them. If the docs get pressured by knowledgeable people, sometimes they will get on the stick. The cancer foundation may help, the epilepsy and kidney foundations helped my sonand me alot. I think if you explain what is going on, they may be able to help in some way.Did you ever get a good second opinion on your recent situation?

Carol, it's awful what they are putting you through as far as meds. What's the big deal with plaquenil? Even a small dose would be better than nothing. It would seem a better choice than prednisone by injection, which sounds like what they were going to give you. I just had a shoulder shot and it is affecting me like I'm on a taper pretty much and is lasting a long time. But prednisone increases bleeding, so why would they prefer that? I'm with you, I dont get it. I liked my shot and it didn't hurt. If it doesn't disqualify you then maybe you should try it. Whatever you decide to do, it will likely be right. You are tough, Carol, and I would try to ride both sides of the fence as long as you can get away with it and give em heck when you can. If the rheumie prefers to do the injections (which they receive higher compensation for BTW) then maybe thats a way to get some pred at least as long as it doesn't disqualify you. Otherwise, I would try to find out exactly what drugs they feel are safe for you to take while on the list. This stuff is in writing on a website somewhere if they didn't give it to you and not allowing you your meds for your lupus is just another way to discriminate against you. They are making this really hard, and maybe you too need to get the printed out docs for transplant criteria or make a request in writing for the information. I thought not so high doses of pred are okay. MAybe the shoulder injection is not classified the same way. Also, maybe they should just give you pain meds if nothing else. You shouldn't be made to suffer. Also, there is massage therapy, whirlpool, ultrasound and cool packs, and if you bug them enough for all this other crap, they may give in and give you what you need. Oh, also there is a muscle relaxer topical gel called Voltaren gel and its about as strong as a voltaren pill, which I can't take, but is absorbed through the skin so it doesn't stress the liver as bad. It is strong and works for pain and stiffness, not so much for swelling, but it can help and they may not consider that a drug because it is a topical. Also there are lidocaine patches, 12 hours on, 12 off, but at night they are wonderful and they numb stuff up and can be cut. I have all of this stuff. If you ask about all this stuff, then maybe you'll ultimately get what you really need. I believe they can give you some of your drugs, I can ask on the liver transplant site--there restrictions are stiff too.

I pray for you guys and my thoughts are with you both. I wish I could help, if I was a millionaire I'd fly you both to whereever you needed to be to get you whatyou need. I wish so much things would work out. I will pray for your doctors, that they will develop some insight andcompassion, and that things work out and become more bearable. These docs dont realize that our bodies have adjusted to these meds and that we function worse and probably are more of a problem without some of them. I wish you the best Barb in lowering the pred. According to my old records, I had a pituitary problem like cushings that caused my adrenal problems, so now that I've been on 20 mg a lot, I am falling into spells of deep sleepwithout it and my family has difficulty waking me as my pituitary isn't recovering as it should. I so understand the difficulty, just lowering it can be hard for so many reasons, not to mention lupus, then starting a new med too.

I miss you guys and want you both to be well. Love to you both.