Update still under the weather!!!!!!!

Hi everyone:

First off Merry Christmas to you all. Wow, it's hard to believe that 2014 is almost over. Last year at this time I was laying in a hospital bed with a very bad case of pneumonia. Well, I'm home this year and I'm thankful for that, however, I'm STILL FIGHTING C-diff.

I've had this stupid bug since the 6th of November. I saw the ID Doctor and they instructed me to start to taper my antibiotics, which I did. Wouldn't you know that after 5 days my symptoms got worse and I'm now back on the full dose of antibiotics again. I was told that there is one other medication I can try before I may need a stool transplant. Yep, you read that right, a stool transplant.

Apparently, patients who are immuno suppressed like I am and can not get rid of their C-diff, they do a stool transplant on the patient. It sounds terrible, gross, disgusting all those things, but I've been assured it will work. I'm not going to give TMI, you can look it up or use your imagination on this one.

My daughter has been sick 7 days now, and she's been really sick. Finally, she asked to be seen on Christmas Eve. Off to urgent care we go, her temp was really high, they did an x-ray and said she had bronchitis. Gave her some antibiotics and sent her on her way. Well this evening the urgent care called and said that they reviewed her x-rays and she has pneumonia and not bronchitis. Needless, to say I'm freaking out about her.

She's never had this before and she's been so sick. Of course, we're worried will I get it from her, or maybe her Dad. My biggest worry though, is that she's going to Hawaii for winter semester to take her biology classes. She leaves on the 4th of January. I sure hope she's well enough to travel there and be there for a full 30 days. I wish I could go with her just to watch over her now. I mean I would LOVE to see Hawaii, but I'm NOW more worried about her health and the MOM in me wants to not leave her side at all.

She was up at 3:00 this morning having trouble breathing. I was up with her and watching like the Mother Hen I am. She slept a lot today, we did manage to open presents, which she hadn't gotten any for us. She's been in bed totally laid up for the past 7 days. We told her not worry at all about it. So, could you all please say prayers or send healing thoughts her way. She needs to be at 100% by the 4th of January for her trip.

As for me, I don't think I'm EVER going to be well again. My lupus profundus is breaking out everywhere and my Doctors are fighting over which medication to give me. I'm totally confused on what to do about which Doctor to listen to. The C-diff is a real BIG PROBLEM and I really don't want to go through a stool transplant.

I'm looking at having to have my foot operated on AGAIN in January. The Orthopedic Doctor thinks I'm having an allergic reaction to the material that he anchored my tendon to my heel to when he put the new tendon into where my Achilles tendon was. So, he's going to have to open up the whole bottom of my heel, remove the item and will also shave any bone that seems to be in the way.

As for my leukemia, my anemia is getting much, much worse and I'm so fatigued. I just feel like death warmed over 95% of the time. I'm having to do more and more things around the house. I have NO ONE to help me with it and hubby will not allow me to hire anyone to come in and clean for me. I wouldn't mind so much, IF, he'd carry the slack. He doesn't do that though and I'm so much of a cleaning freak, I can't stand any messes in the house. he fusses at me for working around the house, and yet he doesn't seem to get, that if our house isn't kept as close to spotless it could cause me to get sick and die.

Like I was told my type of leukemia, there's NO CURE for it. That MOST patients like 5-8 years (some 10). That's IF AN INFECTION doesn't KILL US FIRST. A lot of us die from infections, that's why I have to be so careful with everything.

Well, that's my update, sorry it took so long to give one. I hope you all had a great Christmas and have a healthy 2015. We ALL DESERVE to have a healthy and happy 2015. Take care and you're all in my prayers.

Hugs,
Barbara

I know all of my kids had the parainfluenza and were really really sick. They got croupe with it and had trouble breathing. I thought that was just for little kids! They were very sick for about 7-10 days. And then another week with a really bad cough. I have heard that this illness is going around like crazy. Lots of people we know with this, and other states closing schools because of it. I hope your daughter feels better soon. I'll bet she started with that one. I was so happy, I did not get it! So maybe you will pass it by too. I gave my kids mucinex with a cough suppressent in it and it really helped.

Glad you popped on and updated us, sorry things aren't going better.

That child needs r-e-s-t!!!

Hugs

Barbara my heart goes out to you, you have my prayers.
Jasmine came home sick too, but strep throat, so she is on the mend, you have my prayers for your daughter....
Sure hope your daughter is doing better very soon...
Gentle hugs to you both....

Hope you have a great new year, continued prayers...

Hi Barbara, don't be sorry. I get frustrated like this too with my family. They just don't see what needs to be done like we do. They are blind to messes I swear!! I'm jealous that they don't have a running list of things to do in their brains like I constantly do.

I got quite upset with the lot of them Christmas Eve. I had done all the shopping, wrapping, planning, groceries etc all while working full time and then I had to come home and clean the house as we were having guests. Aaaaargh!!! They heard about my discontent, let me tell you!! Good God I was exhausted!! Then I paid for all the extra work, stress and running with a lovely flare up that still hasn't calmed down completely.

They just don't get it, sadly.

Christmas tip if you have enough storage space.

I have a table top Christmas tree. I wired on the ornaments and decorations so they won't fall off. I had a friend who is really good at decorating trees help me. Now after Christmas I simply take an old sheet and wrap the decorated tree. My husband takes it to the basement. Next year he will carry it up and place it on the coffee table in front of the window. I'll take off the sheet, fluff it a little and plug it in. Wa-La! ALL DONE!

I know most people want their home decorated more than this for Christmas, but this is what I call my "lupus Christmas decorating".

It works for me.

My niece is the same way with dragging her feet until the last minute. She drives me nuts half the time with this.
Can you leave a bowl of dry food and water out in a quiet place for your fur baby? One of mine is like that and I worry when we have guests he stays hidden all of the time.
Try to relax and not fret too much. If the trees are still there when you get back start decoration them with his socks and undies. ;-D. Naw, don't touch them and let them sit. Evenually he will see that you're not going to touch them and he will take care of them.

Despite how crazy our kids make us we will always love them...somethings you must just let go. Jasmine is driving me nutty with the wedding plans, still no date, I told her at Christmas that the must make some plans and we are still waiting, its worse than pulling teeth....So, I do understand your frustrations and Nikita will get it one day....
Prayers that this will not make you sicker... many prayers....

Hey Acquiesce, Kim, Lynnwood, Joy, Diane, and Chart:

Hey all thanks for responding to my post. I know I should accommodate my family like I do but well.......you know how it goes. Kim my family is VERY AWARE of how ill I am. My daughter 3 years ago found me unresponsive and I nearly died. Ended up on life support and missed her high school graduation because of it. She is VERY, VERY, VERY AWARE of whats happening to me.

I swear that she wants to push my buttons 24/7. I think she's angry with me for being sick, she has no real memories of me being well. She was very young when I could do all the things that Mom do. I was the school volunteer coordinator when she was in 1st grade, the cookie Mom for her brownie troop. Did all the trips with the school field trips you name it. Even when we moved to Germany in 2001 I was still pretty good and traveled extensively with her. I started sliding down hill in 2004 and have done nothing but just fall down that hill now.

I did get her to the airport, we spent the night in Philly on Saturday night. I swear not only was I stressed over the fact she wasn't packed n ready to go, but I managed to get rattled and lost my 1 carat diamond wedding anniversary band in the car last Saturday night. I'd stopped by her university and while I was sitting in the car, I took off my ring to put on lotion. I know I shouldn't taken it off (didn't want lotion all over the diamonds) anyway, I laid it on the dash and I put my lotion on. My daughter came down to the car and I got distracted and forgot I had put the ring up there.

I drove off with it sitting on the dash, we stopped at two stores and then headed on to Philly. It didn't hit me that I'd lost my ring until I was checking in at the hotel and looked down at my hands and noticed my ring was missing. Talk about stress, I'm sure my BP shot up into the 200's. Anyway, I went down to the car and started searching for the ring. I couldn't find it and then I really got upset. Once I got back to the room, I called hubby to let him know what I'd done. Now, I give him TONS of credit cause he didn't lose his temper with me at least. He was seething I'm certain, (I lost a 24 carat gold necklace that he bought me in Saudi back in 1991) so I have a history with this issue. I kept thinking "Oh man, I'm not going to get that eternity ring for my 30th anniversary this summer, if I don't find this ring."

Well, I couldn't sleep at all and I didn't lay down until 2 am, had to be up at 4am to get daughter up for her to catch her flight. She asked me to help pack the suitcase, that she wouldn't let me do earlier, and we rushed out the door at 5:15 am. Lucky for me, she did manage to lift the special floor mats in my car and found my ring for me. I'm still upset with her though, she knows how much I hate it when she waits till the very last second to do something. When I got home Sunday after noon, only the boxed trees and 1 storage bin had made it to the basement.

Well, it's now Friday morning very early and I still have 3 storage bins sitting in the various rooms and I'm so frustrated with hubby I could spit. I know that this stuff doesn't mean much to him, but it does to me and I can't stand looking at it. It's like the cleaning in the house, I can't stand a messy house and I have to keep it clean. Most days I think I'm going to go crazy because I can't hire anyone to come in and do the stuff I can't. Asking him doesn't do a darn bit of good, as he doesn't do it until I pitch a royal fit. To answer anyone's question as to, "why I don't hire someone", he won't allow it. He doesn't trust ANYONE WE DO NOT KNOW, in our home period. I can't even be at home with a repair person w/o him or our landlord being present.

So, as to how am I, I'm flaring big time. My lupus profundus is really bad and growing all over my skin now. I did manage to get my Rheumy to speak with my Dermatologist. Due to the fact that my Rheumy, Cardiologist, and Oncologist are against my taking the drug my Dermatologist wants me to take. They agreed that I'll try something different for 3 to 4 weeks and if it makes no difference then I'll take the medication the Dermatologist wants me to take.

I'm a bit worried as this medication can cause nausea, vomiting, loss of appetite, dizziness, severe anemia, turn your lips blue, mood swings, suicidal thoughts etc. Just what I need right now, I feel like I'm having a nervous break down already. My foot is killing me and STILL HAS AN open WOUND ON IT. It's hurting me so badly I can't even rest it on the floor. My back is also hurting a ton, when I had a massage today, Pam said that my back was so tight and in such bad shape she's never seen me like this before. She worked on my back for 1 hour and 45 minutes. She openly admitted her arms were aching when she was done with me. I'll see her again on Tuesday and next Friday the 16th I'll get an injection in both sides of my back then.

I'll let you know when I get my surgery date, the plan is for the surgeon to open up the heel of my foot and remove the stuff he used to anchor my tendon to my heel. He will also shave some of the heel bone off too, yep I know this is gonna hurt. I'm dreading the surgery, but looking forward to it. Just pray that I get relief from the procedure. I'll also see the cardiologist and dermatologist next week too.

I hope our weather warms up as this really cold stuff is making me ache badly. It's currently only 6 degrees outside. Anyway, that's all that's new here with me, my fur baby is doing well, but she's not a loving as I had hoped she'd be. Maybe it's still to soon for her, she's following me all around the house and stuff, but she doesn't sit on my lap. I miss that so much, Grady always was on my lap and loving on me. Well, it's 2 am and I'd better try to sleep, have to be up at 5:45 to rub hubby's back.

I hope you're all doing well and that you all have a healthy 2015. That's what I'm praying for, that each and every one of us improve 100%. Take care and I hope you all have a pain free days over the weekend. I'll check in again soon.

Hugs,
Barbara

Jazzi and I also had a fallout after Christmas and I'm still mad at her. One reason is we took her ring shopping for the grooms ring and the lady in the store isexplaining to me why not to get tungston bands as the can shatter and Jasmine yells at me while this nice person is explaining this, so I turned to Jazzi and said "I'm your mother, don't yo ever yell at me as we are getting this for you ad your future hubby". She did apologize and we did have to go to another store...
Kids don't you love them... I would agree with you in that Nikita's angry at your illness and not you, just be patient, hopefully she is enjoying Hawaii...She will come around...
Many prayers and put a call throught to a cleaning service and tell your husband and that might get his duff in gear...just say you have someonecoming to clean...stop the begging ...
Again continued prayers and well wishes...

Try not to stress over the crates. I know that is hard to do, but think of the "Serenity Prayer". You're daughter will come around, just give her time.

I hope you foot gets better after the surgery. My mother is having surgery on her knee next month. She tore her meniscus(?) in two places and has to have it sew up.

Chart:

Thanks for the advice, I wish it would work with Georgina, but it's a TOTAL WASH OUT WITH HER.!!!!!!!!!!!!! When I picked her up from the foster home, the Foster Mom informed me that the Cat was strange. I asked strange how, well let me tell you she's strange.

Georgina doesn't eat treats of ANY KIND. She isn't drawn to catnip, nor does she want people food. She will only eat Friskie's Country Style Dinner Wet and Beyond the Label Chicken flavor dry food. I even tried to give her some tuna out of the can and on a glass plate. She walked away from it, with her nose up in the air.

I can tell she wants to sit on my lap, but I think she was just so abused in her other home that she's afraid of most things. I mean when she eats her dry food out of her bowl. I have to be standing right there with her petting her back. Even then she's looking all around like someone is going to come a get her food.

If you have any other suggestions, Id be so happy to hear them. I hope your RA isn't causing you to much pain tonight and that you're feeling a bit better now. I'm going to head to bed, it's getting quite cold in my house. Time to cuddle down under my blankets in my bed since hubby turns the heat down to 62 or 63 degrees at night. Hope you're sleeping well tonight and I hope you have a low pain day tomorrow.

Hugs,
Barbara