Update on Barb

Hi all:

Thanks so much for your prayers and well wishes and following this thread. It really helps me when I read your posts and it really makes me feel loved. Need a lot of that these days I'm guess. I really feel like a HUGE BURDEN here at home. My family doesn't get that their ACTIONS speak very loudly to me instead of their WORDS.

Donna just so you know I'm home from the hospital and I'm healing so slow, my fractured pelvis is still hurting at a solid 8 out of 10 daily. Only time I'm not in terrible pain is when I'm at PT and the PT is pulling gently on my leg towards her. It like traction but she's doing it manually. I'm still unable to do pelvic tilts and the stretching is really hard to do.

Overall, I'm miserable, my vasculitis is almost on every limb, plus it's across my belly from hip to hip. I'm not on any medication to treat it yet, and I know it's the cause of my fevers, chills, and overall feeling like I've been run over by a train.

I'll be starting thalidomide to treat it but my oncologist informed me that it's a wicked drug and he let his special training and certification to prescribe it expire. He did so do to the fact that patients that take this drug feel so TERRIBLE on the stuff it's not worth him to prescribe it to cancer patients anymore. I'm really dreading taking it but I also know I can't handle much more of feeling as I do.

My foot is wide open with a sore and it's so swollen and the area about my surgery site is red, swollen, and hard to the touch. I met my new PCM yesterday or two days ago and she was 45 minutes late seeing me. She gave me exactly 15 minutes, I mentioned my leg and she never even examined it. She never listened to me or put her hands on me any where to make sure I was okay. She told me that she's was "so sorry that I've been thru so much" that I could have my own medical degree with all the knowledge I now have. I have to say I left not feeling to impressed. She couldn't even tell me if she was the Doctor listed on my pain contract for my prescribed pain medications.

Sometimes, I really HATE going to the military medical facilities. Even though this Doctor is a civilian who has a contract with the government to treat patients at the government hospital. The big topper was she's going away from the 21st of April until the 21st of May. I was told if I get into trouble just see whomever is open.

I'm already missing my old Dr and I suspect I'm going to be ill all the time now, as I have a Internal Medicine Doctor who really doesn't care all that much at the moment. I can only pray that things improve with her. She used to practice as a Rheumy when she was on active duty, then she quit working as a Rheumy and went back to Internal Med. She didn't say why she quit, but she did say, that I'm very complicated and we should consider sending me back to NIH to see what/if there is anything can be done for me.

I told her that my quality of life is terrible and I DESERVE to have some good days. She agreed but told me that she's never seen someone as sick as I am and we need to do something for me or I'll be dead sooner rather than later. That she would try her best for me.

I'm having major issues with my Stepmother. She never gave me all the stuff my Dad left me when he died and now she's put in her will that her grandson should get two items that ARE MINE. She refused to let me have them back in May 2011 and now it's in her will that her grandson gets them. Mind you my Dad never met the kid and he hated her son, (her grandsons Dad). I spoke with a lawyer in my home town and found out I don't have a legal leg to stand on in court. This is extra crap I don't need on top of being so sick. I swear to much more and I'll have a nervous breakdown and I'll be this veggie sitting in a padded room soon.

It's not simple with the issue with my Stepmother because her daughter is married to my brother and this is going to cause a major family fight I'm sure of it. Both hubby and my daughter feel that she's been emotionally abusing me for over 3 years now. I mean when she wrote me and told me about the will, she put in PS. Don't worry the baby will do justice by your Dad's things. That's not a comment from a person who doesn't realize she's hurting me. When she calls every couple of months she'll talk about my Dad and things of his she's thrown away etc and will stop and ask me if she's upsetting me. She knows she's doing it, my daughter told me that my Dad is most likely upset with me for allowing her to do this to me.

I just don't have the willpower to fight with her. I fight everyday just to get through the day with my pain and suffering. How can they expect me to stand toe to toe with this woman. They need to do it for me, I need them to help me more. Yesterday, hubby was very upset about taking me to my appointments. I mean he HATES going to the military hospital. I told him to take the day off and he wouldn't, he's got a ton of vacation and sick leave. They let him use sick leave for my appointments too and yet he only spoke like 10 words to me all day yesterday cause he was upset about being late to work.

I told him he's not to take me to anymore appointments. I can't take the stress of how he acts and it makes me feel like a HUGE BURDEN. I feel unloved, uncared for and all alone in the world right now. Even my new fur baby isn't loving towards me. Yep, she follows me and comes to me when she wants to eat or be petted. She NEVER sits in my lap nor can I pick her up and cuddle her. The rescue foster mom told me she was a loving and friendly cat, she's not that at all. They offered to let me return her, and I feel like I can't she's getting adjusted to our home and I don't want to confuse her.

I just miss my Grady boy and my parents. My last hospital stay I laid in ICU for 3 days before my hubby visited. He felt he had to be at work, forget the obligation to me the sick wife in ICU. I know none of this should bother me so, we'll celebrate our 30th anniversary in June, but he's getting worse and I guess I'm getting more sensitive about it. I'm so frustrated, this disease has robbed of so much and with every additional disease added it takes more and more from me. Right now all I want to do is crawl under the bed (like the cat) and not come out. I'm losing weight (I needed to from all the pred) but not the way I'm doing it. It's not in a healthy way to say the least. I know more stress will be coming as my daughter will graduate from college next month and plans on moving back home. I walk on eggshells when I have both of them under the same roof. My hubby and my daughter have taken the Briggs Myer personality tests, they are the EXACT same personality type expect one is extroverted and the is an introvert. Where I took the test and I'm the polar opposite of them. They rarely stop and consider that when dealing with me, needless to say I'm the one who ends up with hurt feelings all the time.

Well it's now 3:00am and I need to try to sleep I guess. I have to get up at 5:45am to rub hubby's back. Yep, you read that right his back is hurting him and I do this for him so he can get through his day. I also will put his lunch by the door and open all the drapes. So I'm gonna go and thanks for letting me vent. I hope you're all doing a WAY LOT BETTER than I am. Say prayer or send me some positive energy, I really could use it.

Hugs,
Barbara

Sending so much positive energy your way, many prayers as well...
(((Hugs)))
You did good with your daughter, she will be a college graduate, woohoo on that, that is amazing...

Prayers for you Barbara, still thinki ng about you and know we all do care...
Your not alone when your here and you are family...and a good friend...
Thank you and prayers...

Barbara sending lots more prayers...

Thinking of you and sure hope your doing better soon so that you can attend your daughter's graduation, that is amazing for her and you, as you both worked hard towards this goal...
Jazzi has postponed the wedding until 2016 now and I hope she can decide on a date soon. The engagement party is in June all fixed and now I just have to get prepared for it.
My hubby was overseas for two weeks which left me alone and that was extremely hard.
I do say prayers for you and hope they are helping!
Prayers...

Hi Chart and everyone:

Sorry I've not posted in a long time. I just have been feeling so poorly that I don't even want to sit up and watch TV. My poor fractured pelvis seems to be not healing and I'll be getting more x-rays of my pelvis when I go in to see my Orthopedic Dr.

I was given my first two infusion of IVIG on Monday and Tuesday of this week. First time ever that I've been give IGIV has some side effects that have me a bit worried but time will tell I guess. I'm not feeling the best tonight, between my second dose of IVIG last night and then my MTX I'm feeling ugly tonight.

I was told the IVIG infusion would take 6 hours, boy that was a lie. It took 8 hours for the infusion, 1 hour of observation then I could leave. Not to mention a 1 to 2 hours drive to and from the medical center. Needless to say, I was told to call the pharmacy as I was pulling out of my drive way and let the pharmacy to know that I'm on my way. I thought that was kind of odd, well according to the nurse who gave me the infusion, she said that's done because the IVIG is SOOOOOOOOOO EXPENSIVE. I asked her how much and she told me $5,000 a gram. Now, this is what I was told I'll research it when I'm feeling better, but if it was $5,000 a gram, I was give 176 grams of the drug between Monday and Tuesday infusions. That would mean I was given $880,000 dollars worth of medication. If the her dollar figure is correct, this is the most expensive medication I've been given to date. No wonder why transplant folks stuff cost so much.

The nurse said that if a kidney transplant patient rejects their kidney they get this drug. A bit mind boggling that's for sure. I just hope that this drug works and my Vasculitis clears up soon.

My daughter will graduate from college next weekend May 30, 2015. I sure hope I feel better by then, I missed her high school graduation and I refuse to miss the college one. She doesn't want me to go to the commencement ceremony as I'll have to sit out in the sun/rain for 3 hours. I'll be attending the convocations on Friday and Saturday. She's a double major and will be doing a convocation for each major. One on Friday afternoon, and then one on Saturday after commencement.

Well, that's it for my up date, hope I'm happy with something in my closet to wear to the graduation. I've already made the arrangements for our celebrations. She said no party or anything like that. Dinner out would be fine she said. Well, I'm falling asleep and need to lay down, just wanted to touch base with you all. Will give another update soon.

Hugs,
Barbara

Barbs, I hope you feel better to attend the graduation. Congrats to your daughter!

Sorry to had to go through all that with the IVIG infusion. I hope it will help you.

*Hugs*
UA

So very glad to hear from you, I was getting worried. Glad you have plans to attend the graduation. I hope you can make it okay. You did a good job bringing her up. We also did a quiet dinner after Jasmine's Graduation, but it took forever on the drive to Texas Roadhouse. That's what she wanted, so it was a bit noisy.
You have my prayers and blessings...I have heard of IVIG and went to a neurologists that did them, but she sent me back to my RA doctor...they are expensive...

PS. Online it says IVIG is $48-$68 a gram - that nurse may not know what she is talking about!!

Get him something for his cars.

Get him a gift card to an auto parts place so he can get parts for those cars when he wishes to...
Many Prayers...

Hi Barbara,

Thanks for the update. Hope you had a good memorial holiday. I hope the IVIG infusion will help you.

I bad when it comes to buying gifts... Maybe small model of his car for a collection if he's into those sort of things. Or watch a nice movie together and order in some nice food and deserts.

Continued prayers and thoughts for you...

UA