Update, still among the living!

Glad you were able to get out of the house some.
I hope your fever doesn't spike any higher.
Take care.

Hi Miss Barbara!

Glad to hear you have had a bit of a 4th celebration, however low key it may have been. We recently explored a state park nearby that is overshadowed by a much more popular park, so it doesn't have very many visitors. Nice, quiet, outdoors time. And if you move slowly enough, it doesn't even feel so hot. We made chicken salad and went to the park, walked a bit around a lake, sat and read & ate on the grass in the shade. We only brought 1 tick home with us.

Unfortunately, the trail we picked to walk was almost totally in the sun, and seemed to be mostly uphill. I got a bit of a sun rash - we both got all puffed up from the humidity. Even after the walk my knees/hips were so stiff I just about fell onto the blanket and then had to roll over & use a tree to get up. Suddenly my weight hasn't changed but my waist, hips, & thighs are bigger and 'sloppier' & it seems so much harder to move.

Is your rash any better? Maybe the fever is associated with that. Try to get plenty of fluids today and I hope you can see your regular Dr tomorrow. Will Bill be taking you to the Dr or will you have to drive yourself?

Hugs.

Many more prayers and well wishes to you, Barbara...

Barbara, I'm happy to hear that they took off the cast and there was not infection on the the incision. Yayyy!!! I'm sorry you still have the rash and the fever. Hope it will go away soon.

Please don't stress out yourself about your FIL from now. It's sad to hear that your own FIL willl be negative because you are not well. I am very sorry.

I hope all your upcoming apps goes well.

Take Care. Praying for you to get some pain relief and feel better.

*Hugs*

UA

Thanks UA for your well wishes. I'm trying really hard to feel better I truly am. I just know that my lupus is acting up big time. Or last least I'm praying it's my lupus and not my leukemia.

Lynnwood, I'd love to do that to my FIL but he'd just have some sly comment to make. Hubby and his family are big, big debaters and can always find a counter to something you say. That's why I don't get into it with any of them, except my spouse and kid. They I feel just fine telling them to go jump in a lake, you know what I mean?

Today, my foot hurt quite a bit. Guess I might have put to much weight on it yesterday. Tomorrow I'm going to try to use just my walker in my bedroom. I've been just using the walker in the bathroom. As our in suite bathroom isn't that big, I'm not walking on it that much.

I spoke with the Health Benefits adviser and she told me to contact my PCM and have her reenter my referral for PT and put that I have a driving restriction and need to resume PT at the former place I was going to, which is only 3 miles from my house. They didn't promise that it will be approved, but they will look it over. Please lots of positive thoughts that I get it approved.

I hope my appointments go well next week. My daughter will be home I'm hoping that she will be willing to take me to my appointments, otherwise, her dad will have to take time off three days next week to take me to my appointments. It's so hard to believe that it's almost the 15th of July already. Where did the summer go, it's flown by. I guess with my surgery and the passing of my cat I've been living in a fog.

Well that's all that's happening here. Will check in tomorrow or the next day. Have a good night everyone.

Hugs,
Barbara

Hi Barbara, I hope you're doing a bit better today. My mother in law makes fun of me being sick. She's a rather nasty person. That's my way of saying it nicely.

We (hubby, kids and I ) went on holidays last summer with the mother in law and brother in law and wife,kids last summer. I had until that point been good at just ignoring the comments etc but after a few days of the MIL and extended in laws and their crappy attitudes , well that was it for me.

I said the lot of them were bullies, packed up our stuff and announced we were going home. It was hard for my hubby and I still feel bad for that but when their negative comments were starting to extend to my husband and children I had just had enough! Life is far too short to put up with people who are rude and mean like that in my opinion. I still feel that way about it but wish I had of kept my mouth shut. We don't really have a relationship with any of them now without tension and it's my fault. Mind you, when we do have to see them they watch their words now as they know I will not tolerate it.

Honestly though I'm secretly happy that I no longer have to deal with them as often either. It's a double edged sword!! Ugh, they are such jerks! I don't understand how people can be like that.

I hope you can find some excuse not to go :) I totally sympathize!

Sure hope your appointments went well and that your enjoying time with your daughter. Many many prayers and continued well wishes...

Good morning everyone:

Yep, it's 1:50 am and I'm just sitting here on my bed wishing I could get comfy. I'm beginning to think that sleep tonight will not be happening. My pain is up thru the roof and it really doesn't seem to matter how much heavy pain medication I take, it just still hurts like HECK.

I have had a pretty rough week starting on Monday July 14, 2014. I saw my dermatologist who has handled taking care of the bad wart issues. Well , I've had the rash on my leg, it's on the inside of my knee and up my inside thigh. It's been there since, maybe January. When I saw my Rheumy in March I asked him what it was and he told me it was a bruise.

At that time it looked a deeper black, now it's vivid red. I'm also starting to get one on my other legs in the same spot as the one that has had it so long. Hubby told me he didn't think it was a bruise and I should ask the dermatologist that morning. So, when I saw the Dr I asked him what he thought it was and his response was " it looks like a bad case of vasculitis" He took two punch biopsies from the rash. So, I'm now waiting to hear the results.

Have to say, I'm so BUMMED OUT over the thought of having another autoimmune disease. I'm already on the medications that they use to treat vasculitis. Since my lupus is ALWAYS flaring these medications are just holding things at bay. I have ZERO idea what they will do for me if it is vasculitis. I guess if I get it in my brain I'll just have a stroke or die. I just don't want to continue on fighting right now, I can't handle another problem on my plate.

My oncologist thought the rash was vaculitis when I saw him on Tuesday. He's VERY concerned about me, his exact words to me were, "Barbara you are a very, very sick lady, and it takes 100 of us to try to keep you well, you really do not need another autoimmune problem." Of course, he was joking about the 100 Doctors, I really don't have that many.

My PCM saw me on Thursday and she wouldn't go either way on whether it's vasculitis or not. Still she told me to let her know once I get the test results back. I'm just feeling so helpless and honestly I'm sick as a dog. Every single joint in my body hurts, and that's including my toe joints. I'm so fatigued I nod off asleep while my family is talking to me. I"m up in pain thru the night and can't sleep thru the day either.

I just don't know what to do, my fever blister is still hanging on tight on my lip. I'm up and walking on my foot that had surgery on it. It's painful to put all my weight on the foot, but I need to be doing that by next Wednesday I'm suppose to be walking fully on my foot. Tomorrow, IF, I'm able to drag myself out bed I'm going to attempt to walk to the car. If I can accomplish that I may go ahead and drive us somewhere close by. Just to assure hubby I'm okay with driving myself to appointments from here on out.

Well, I guess that's all the news here. Diane I missed your posts this past week, I'm praying that you're doing okay and nothing serious was happening. I pray that the rest of you are doing better and are having less painful days. I also hope and pray that you're all in your beds, tucked away and dreaming great dreams.

I hope you all have a wonderful day tomorrow. I'm gonna go and put my TENS unit back on and see if I can get my back to ease up some. Maybe, if that can happen I can sleep tonight. I'll post an update soon.
Take care everyone and thanks for checking up on me.

Hugs,
Barbara

Prayers that you'll get some good news soon. Your over do for something good! Sure hope you were able to drive.
Many prayers and well wishes.

Hi Joy, Chart, and Loretta:

Thanks for your support ladies. It makes me feel wanted and cared for, I'm not getting a lot of that at home unfortunately. This week has so far been a really hard one for me. I'm flaring so badly and my Rheumy is a walking male part that I can not name here.

I swear that man is going to drive me totally crazy. My dermatologist called this morning to give me my biopsy results. Well, I do not have lupus vaculitis, YAY, that's great news. However, the rash did test positive for something. The resident gave me the two names of the cells (two different types) he said that they both show inflammation. I looked them up online and all I could find was one of the cell types is related to my bone marrow. The other is related to my immune system. Other than that that's all he said, told me to f/u with my Rheumy.

So, when I spoke with my Rheumy this afternoon, I told him was the Dr said and he was like I don't know what to do, I'm not a dermatologist. I was so frustrated I wanted to slap him. I explained about the rash, and all the sores that look like chicken pox popping up on my body and scalp. I told him about the low grade temps, the severe fatigue and joint pain. EVERY SINGLE JOINT HURTS ON ME, I told him I was having issues with my breathing and I needed to know what to do.

He was like well, you know it could be or lupus or your fibro. I guess you could up the amount of prednisone your taking for a couple of days. If it's your fibro tho it wont help and if you're not feeling better by Saturday I'd stop it and go back to your baseline. I wanted his okay, because he's implied to other Dr's that I self medicated my prednisone. Which I never do that I ALWAYS contact him. When hubby and I called him on it, he replied "Oh, the other Dr's must have misunderstood". Which, we know he lied, as we read those EXACT words in his note to one of the Dr's at NIH two years ago.

We looked him up on one of the rate your Dr sites and he has a 1 out 4. I really dislike this man, but really have ZERO options left. I'm stuck with him. :( So, tomorrow I'm going to up my prednisone to 45mgs and see if I feel any better by this Saturday. I have to admit my mood is really down and blue. I miss my cat so badly I cry every day for him. Once, hubby leaves in the morning, I have a good cry, I feel I'm ready to have a cat in the house but he's saying no as is my daughter.

Then last week my daughter was great to take me to appointments, but she said and did somersetting that made me feel like such a huge burden that it really hurt me. When I pointed it out she blew me off, basically thought I was over reacting I think. I'm not going to say what exactly, but I do know that my therapist when I saw her tonight said that it was a VERY UNFEELING thing to do to me. I swear between hubby and daughter I feel as if all I do is bug them.

Hubby, doesn't realize that when I ask for something, (I'm very independent and HATE TO ASK FOR HELP) when it takes him 3 hours to get that for me, it hurts my feelings. I get that he's busy with things in the house, BUT.......if I ask for a glass of juice and don't get it for 3 hours, I feel like I'm a HUGE BURDEN. Do any of you ever deal with stuff like this? If so, how do you avoid your feelings getting hurt and feeling like a burden?

I did drive the car tonight to my therapy session and showed hubby that I'm capable of getting to my Dr's at least. If the Dr office is close to the parking no problem. If I have to go to the Medical Center I'll have to get patient escort to push me in a wheelchair to the clinic. It's a very long walk from the parking garage to the clinics. Hubby said it's almost a 1/4 mile and I can't manage that far on my own yet. Walking in the stupid boot has me off balance and my back is killing me like 50% more than I normally do w/o the boot. My wheelchair isn't electric and I'm to weak to lift it out of my SUV. So I have to have someone to push me far distances.

Well that's the word from my world. I hope you are all doing much, much better than I am. Joy, I get all sorts of red dot rashes, some are related to my lupus and some are just plain old heat rashes. I hope you figure out which they are and they don't affect you to long or to badly. Loretta, I hope that all the skin spots and NON CANCEROUS and that your pain is much better controlled. Chart, as always you are in my prayers. I hope you're feeling a bit better. How are things going with the upcoming wedding? I sure hope your future Son-in-laws father gets himself together and stops creating drama.

Well, I'm off to bed, hope you all have a good night and a pain free day tomorrow. Take care and wishing you all the best.

Hugs,
Barbara

Barbs, I'm sorry you're having such a hard week. Please don't let what your daughter said get to you. 3 hours for a glass of juice? I'm very sorry Barbs... Maybe you can get mini fridge and keep in your bedroom?
I hope the increase in Prednisone will help you.

Hope you're able to get some rest and your pain subsides.

*Hugs*
UA

Hey Joy, UA, and Chart:

Thank you for being concerned about me. I know that it's frustrating to hear how they treat me at times, but I'd like to hope that it's not on purpose but rather that they just forget about me at times. I've been married a very long time and hubby I think just tunes me out LOL. As far aa my daughter, she's 21 and I hear it's part of her age.

I have a mini frig it just didn't get into the bedroom this time. It's in the dining room, with an assortment of stuff in it. Anyway, I'm up and moving a lot easier these days. I managed to find a device to put onto my shoe and it levels me so that my back and hips aren't killing me so badly while wearing my boot.

The additional steroids have made me physically feel so much better. However, I can't seem to sleep before 4 or 5 am. Then I get up with hubby to put his lunch (that he made) into a bag and sometimes I'll add something for his breakfast then tell him good bye. I use to get up this early because of Grady needing his medication daily, I guess that's why I miss him so much daily. He's not in my face wanting to be feed him right now.l Even though I fall asleep at lets say 4 and I'm up at 6 I can't sleep again till night. I'll stay on my higher dose of steroids and will begin to taper on Wednesday. Sure hope I don't flare up as soon as I go down on the steroids.

I did a fair amount of walking over the weekend and even managed to help do a bit of housework. Things haven't been done around the house in the way I like in over 7 weeks. I'm rather picky when it come to my home. I can say that I do know when I've been up on the foot to much. The tendon starts to burn and aches terribly I can tell I need my break thru pain medications.

Well, that's the news here, it was a warm day here but I was able to watch my birds eat, while sitting on the couch in my family room. Have several appointments this week, I see my dermatologist tomorrow, I have a massage on Tuesday at 12 and I see my radiation oncologist on Thursday, so busy week for me. Plus, I'll be doing all of my own driving and getting myself from the car to my Doctors offices. Lucky for me both Doctors have valet parking.

Hope you are all well tonight. Chart, so sorry to hear about her your hip, Joy the bladder stuff sounds like no fun. UA I hope things are getting better for you and that you're feeling much better. Take care and stay in touch, I want to thank you all for being there for me always.

Hugs,
Barbara