I'm Flaring Big Time

Barbs, I hope your fingers will heal quickly. I'm glad you got an early surgery date. I will be praying that everything goes well.

It's nice that your daughter will be home. I'm sure she'll be happy to spend some time with you.

I hope all your upcoming apps goes well. Get your rest and I hope you will get some pain relief. As always, you're in my thoughts.

UA

Barbara,
I just wanted to pop on and say how much it hurts my heart to know you are going through all of this. I know it definitely must feel like you got the short straw. I'm sorry you are having so many issues with your health and that things look so bleak. Just remember that we are all here for you and that we all care about you. You are a strong woman and you will pull through this and anything else life throws at you. Some of us are just meant to carry a bigger load than others I guess. You are in my prayers and I sure do hope that you will get some relief soon.

Much love and hugs,
Lynn

Hi Barbara,

When I read your posts it makes the little school dramas that I am experiencing at work seem so miniscule and insignificant. My heart goes out to you. I wish I could be there giving you a very gentle (((((((((((((((((((hug))))))))))))))))).

Love, Laura

Hi UA, Lynnwood, Lynn, Joy, Laura, and Loretta:

Thank you all so much for your support and for caring. I have days when I truly feel those who are my immediate family could care less. Yet, all of you care and support me so much I can't begin to thank you for all of it.

My fingers are really sore today. I'm going to have to call my PCM and ask her to increase my break thru medications. What I'm taking isn't going to keep the worst of my pain at bay. She allowed me to triple my dose when I had my thumbs done in November.

I received an interesting phone call today from the PR department of the University Medical Center that did my radiation. They included this heat therapy and it's pretty new and since my case was unique in the fact I don't have cancer in my fingers, they wanted to hear my full story. The PR lady then asked me if I would be interested in doing a TV interview for a segment on the local news in our area. I haven't decided yet if I want to. I told I needed to discuss it with my hubby and daughter first. I don't want to do an interview and embarrass them in any way. It's not that I"m ashamed to tell people I had terrible warts on my fingers and hands.

However, my daughter is a VERY PRIVATE PERSON. She hates it when I share any information about her or me or her dad, with anyone else, including family, grandparents, aunts, uncles. So I want to make sure that she's okay with this, it's VERY possible one of her high school friends or their family may see the interview on TV and they would say something to her, then she may be embarrassed.

I don't know what to think, what do you all suggest and think. I mean I know it's the Medical Centers way of getting PR about this new therapy and there are others being treated too. Guess, I have a lot of pondering to do. Any thoughts or suggestion would be greatly appreciate it. I hope you all have a great Memorial Day Weekend.

Stay safe, be well, and I pray you're pain free.

Hugs,

Dear Barbara--

I admire you, and my heart goes out to you for all you've had to endure. I hope you consider June 6 to be a break thru day regarding your pain.

I ran across a wonderful quote the other day that made me think me of you:
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“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'" - Mary Anne Radmacher
I'm changing my signature to include this relevant quote, and every time I read it, I'll be reminded of you.

Lots of love and hugs.

Jan

Hey Diane, Jan, and Joie:

Thank you so much for your responses and prayers. Jan the quote is beautiful and I love it. I don't think of myself as a warrior or even a real fighter. I just seem to have many lives like a cat, I've just not run out of my 9 yet.

Today I woke up in terrible pain, the radiation burns are now if full swing. My fingers are swollen and bright red. The heat that's pouring off of them is amazing and I can't even take a warm shower or wash my hands in warm water right now. My water has to be tepid so I use the soap and then rinse and soap again like 4 times. I'll have to contact my PCM for her approval to up my break thru pain medication cause what I'm allowed isn't going to hold me at all.

Then on top of the burns, my left hip is hurting awful. I'm not sure what I've done to it, but I can't sit down, I have to either lie down on my right side or stand up. Well, with my foot the way it is standing is out. So I've got to lay in bed till Tuesday when I see my Rheumy on Tuesday. I'm scared that maybe I've fractured my hip, my last bone density showed my spine, ribs, and hips where very, very thin. As some of you know, I fractured various ribs in the last year 15 times. I didn't have to do anything but bend over. The last thing my Doctor said after putting me on Forteo was don't fall you could fracture your spine or hip.

Well, I slipped on a slippery floor last week, and fell. I'm afraid I've fractured something, I didn't tell hubby about landing and the fall, as I'd get a major lecture about not paying attention. The other possibility is that necrosis of the hip may be setting in from my steroid use. I mean I've been on the stupid stuff 14 years on June 1 and have never had a break from the junk. Needless, to say I'm frustrated as Ive so much coming up and now my fingers hurt like you know what and my hip is mess.

Well, that's my update and it's 2:17am so, I'm gonna grab my cat and see if he'll snuggle with me and see if I can fall asleep. Hoping you're all sleeping soundly and doing well. Enjoy the rest of your 3 day weekend. Thanks for you prayers and positive energy keep it coming as I really need it.

Hugs,
Barbara

Barbara, with your thin bones you really need to get that hip pain checked out. Don't worry about upsetting your husband, if you broke your hip or if it's necrosis it needs tending to.
Listen to me fuss....I'm sitting here with my left foot giving me fits for weeks and haven't seen the doctor yet. I need to take care of the beam in my eye before I take care of the mote in your eye. If it's still hurting I'm going to call the doctor tomorrow. Maybe he will be in tomorrow.

Hi Barbara,

Please please let your husband know and get yourself checked out. It would be such a setback if your hip was broken. And you never know they just might find that you've injured it, but not as bad as you think. Knowing what is going on will truly help to ease your mind. And I really feel that you need some of that right now. A sweet gentle ((((((((((((((((((((((((hug))))))))))))))))))))))).

Love,
Laura

Good luck on all of the visits tomorrow.
Doctor wasn't in yesterday and my foot was somewhat better today. I think it's planters faciitis again. :-p

Joy sorry that your doctor wasn't in today. Planters faciitis is a bummer it can be really painful. Diane the hips a bit better thanks.

Saw my GI today and apparently the area that lights up in my GI tract is actually my valve in the GI tract. He said that getting cancer in this valve is really rare, but I never do anything in a normal area. Like my blood clots have never been in my legs or lungs. They been Inferior vena cava and Major vena cava, so he needs to look at the valve and take biopsies of it.

He mentioned that it could be infected as I have no immune system. Or a fungal infection since I'm on MTX and the pred for 14 years. Or it could be inflammation from my lupus. Anyway, he doesn't want to wait and because of my lungs issues, my colonoscopy has to be done in the OR so that I can be sedated by anesthesia. He noticed that he has OR time on June 5th. So he put me on the schedule, but taking me off my blood thinner on the 4th doesn't go with the GI protocol and he wants me in of Tuesday the 3rd. Not sure if that will happen or not. I'll find out tomorrow from the Internal Medicine team who will admit and take care of me throughout the whole ordeal.

If I can't go in until the 4th my risk of internal bleeding go up about 30% and he said he would just have to deal with it. He kept reassuring me that it's rare to have cancer in this valve. I sure hope he's right, I really don't need another issue on my plate at this time. He said if it's cancer the surgeon will remove the valve and also make so that I don't end up with an bag. They do not do radiation for bowel, only rectal cancer. I will however have to undergo chemotherapy treatment after the surgery. Guess I will wait and see what next week brings for me.

Nothing ever seems to be easy in my case. I'm so weary and tired, I have to say right now I'm feeling if I bled to death next week it would be okay with me. At least all this stuff would just end. I'm trying not to worry about Fridays surgery and having issues with the vent and all. I said to my husband that I just have to pull thru the recovery. He responded, "you have to, if this surgery doesn't kill you first." I guess I now know how he's feeling about things.

My daughter hasn't expressed a lot, just said don't worry Mom. Oh well, I need to go I have to leave for my cardiology appointment at 6am and a 62 mile drive one way in heavy traffic. Then I'll see Internal med at 1:15 then when done there I'm coming home and dropping into my bed.

Have a good night all.

Hugs,
Barbara

Oh, that valve! I've had problems with my ileocecal valve (valve joining upper and lower intestines) on and off for years. When my lupus inflammation has been high it's one of the things that bothers me.

Since it's right next to the appendix I was hospitalized once when they thought they were going to do exploratory surgery to figure out the pain. After 3 days in hospital the pain was gone (1997!) and although I've had flare-ups since then never again anything as bad. Generally it gets upset if I eat a whole lot of only one thing -- like a meal of popcorn or a meal of bread -- things that congeal in the stomach into a big blob!

Anyway, I hope it turns out to be something uneventful -- I'm surprised cancer was even mentioned since there are so many things that can cause pain in that area.

Best wishes for a peaceful & calm Thursday
Lynn

Well here's the latest update. Saw my cardiologist this morning. It took me 2 hours and 10 minutes to travel like 62 miles. The traffic in the Metro Washington DC area is terrible.

First thing I learned is that my cardiologist has finished his fellowship and will be transferring to this military base to practice as a full blown cardiologist w/o supervision anymore. He offered to help me find another cardiologist, but he's so good and knows me so well, I'm going to drive the 62 miles each way to see him anyway. Certainly no where near the drive Laura has to make or even Jan. However, the traffic is heavy bumper to bumper most times and we move only at about 10-15mph LOL.

Both military hospitals and clinics in the area are all connected via computer so I know that he'll be in touch with my other doctors up at Bethesda. Anyway, he cleared me for surgery, made some recommendations in case they can not get me off of the ventilator. He wants them to give me 2 grams of an antibiotic prior to my colonoscopy on Thursday, said I wouldn't need anything for my foot surgery on Friday. Of course, my Rheumy has already covered my stress dose steroids. Which I don't care I'm used to getting extra steroids all the time. He did bring in a medical student to show him what a textbook patient who has been on LONG TERM USE OF STEROIDS looks like. He even apologized for calling my buffalo hump exactly that. LOL

He did say that a heparin drip is the way to go and since having one requires a higher level of nursing care, I'll go to the cardiology ward, or the telemetry ward, if they are full then I'll go to the ICU. I will be admitted Tuesday morning around 10am. I have no idea what time they will take me for the GI procedure nor do I know about my surgery time on Friday. After seeing him I drove up to Bethesda and met with the Internal Medicine Doctor and he cleared me totally for the surgeries. This was a Doctor who is just finishing up his first year after coming out of med school. So, he had to review everything with the staff doctor. My cardiologist actually had everything done for him. Guess he knew I'd get a very NEW young doctor.

I woke up with my hip hurting worse again and I could barely stand sitting in the car. The Intern that saw me this after morning, called my PCM and let her know about the increase in my pain and my radiation burns. She told him to tell me to increase my medication by 3 times the amount I normally take until I no longer have the burns on them. Not sure what we're going to do about my hip. Guess I'll mention or complain about it to the inpatient team and maybe they'll try to offer something for it.

Tomorrow, I have zero doctor appointments YAY!!!!! I do have massage but that's a pleasure to do. Will go over on Sunday to pick up daughters big stuff she wants brought home. She'll be home later on as she'll have to clean up and stuff. I'd like to sleep in some as I've had the week from you know what. Then on Monday my pulmonary doctor wants to see again.

So, I'm tired and hurting and I'm off to bed and well check in tomorrow night. Hope every one is well or at least as well as can be. I hope that you all wake up feeling good and having no pain. Thanks so much for all your support and being there for me, I can't tell you how much it REALLY MEAN to me.

Hugs,
Barbara

Loving thoughts, prayers, and hugs surrounding you, Barbara.


Jan