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Posted 9/13/2013 1:47 AM (GMT 0)
It's been a long hard day, I'm not liking my life right now and it's just so frustrating being sick. I was caught up in a thunderstorm outside during a fire alarm at the hospital. First they forgot me in the lobby, I was sitting in a wheelchair that I couldn't push. The then rain hit, my cast got damp and it just was a real bummer. Missed my check on my cataract surgery because of the emergency echo, and my good friend from pulmonary rehab passed away this morning. BAD BAD DAY!!!

Well I'm now home, got home about 5:15. It has been a long day that's for sure. Had the echo done and my BP was way high 185/110. I never have high BP, I'm on coreg 50mg twice a day. After the test was done the Tech tested it again and it was down to 155/99, still to high. She suggested I go by the clinic and let my Dr know.

Well, the clinic was closed by the time I got over there. So I just came home, I don't want to be in the hospital, but I feel I need to be in the hospital. Since my hubby wasn't with me today, it's hard on me, I have to wait on patient escort to take me from place to place. They didn't have time to stop and let me get anything to eat or drink all day long. I had a glass of juice on the drive in at 7:30 and then nothing till I got home.

Hubby was already home and quickly made me a bagel with cream cheese. I feel lousy and I know the Dr that first saw me this morning really thought I should be inpatient. I mean, I know he just graduated from med school in June, and started his residency in July but he was very worried about me.

The drive home was terrible as we had some pretty nasty thunderstorms today. I was caught out in them during the fire alarm. I will give the Doctors around me credit though, 3 of them removed their white lab coats and wrapped them around my cast. They tried really hard to keep it dry for me. I was soaked to the bone however, and once back inside I was freezing.

I'm not sure how I feel about everything today. I trust my pulmonary Dr she's been treating me since 2006. She has a wonderful reputation and knows her stuff. She was very adamant that whats happening with me is directly related to my leukemia. She said, "I'm sorry Barbara, I really believe your leukemia is worsening". That's hard to hear as I know there's really nothing that can be done for me. Really, didn't like having to tell hubby that.

Guess I'll wait and see if anyone calls in the morning about my echo. The Tech wouldn't tell me a darn thing. I know my cardiologist is out of town till Monday. My PCM is out too, I won't see her until October. I did send her two emails, but I've not heard anything. Man, I'm just frustrated dang it, I know if I get worse, and if it's tomorrow I'll end up at sick call with a 1st year resident who doesn't know me. I'm a very complex patient and I just hate it when I'm the lab rat for them. If it's the weekend it's the ER and you all know what the ER is like.

I guess I just need to keep some faith tonight that I'll feel better in the morning and by some miracle this will pass and not be my leukemia advancing. I want to thank you for your thoughts, prayers, positive energy, and best wishes about my fiend Billy. He was 55 years old way way to young to be gone already. It brought things to heart for me, I'm 48 now, will I live to see 55, I'm not so sure.

I'm going to just rest and take it real easy. Thanks for everything, you all are the best. Have a good night and I truly love my HW family.

Hugs,
Barbara
Posted 9/13/2013 4:43 AM (GMT 0)
What a rotten day for you!

((((((((((((((((((((((((Big Hug))))))))))))))))))))))))

Barbara, I hate that you had such a stinky day. I think about you everyday and hope you get a break and have some good new.

PS. I just realize your just 3 years older than me!
Posted 9/13/2013 7:06 AM (GMT 0)
So sorry to hear Barbara.

I am sending prayers and good thoughts your way so hopefully you feel better when you wake up.

I turned 49 in May myself and there are days I feel like i'm 90 and I know that you know what I mean.

Hopefully you'll have good news, and I know better than to say this but try not to worry to much. I know, easier said than done but try.
Posted 9/13/2013 11:10 AM (GMT 0)
Barbara what a terrible day shakehead . This time the dark cloud followed you both literally and figuratively. Plus you had the bad news of your leukemia getting worse. I feel so badly for you and I'm very sorry that you didn't get admitted when you needed to be.

Today is my birthday (I was born on a Friday the 13th) and I'm 56. I promised my family that I will make it to 70 and my hubby says to 70 and beyond!

I'm flaring and have very little energy, but I'll send you what I have Sweetie. Love, Donna

Posted 9/14/2013 5:13 AM (GMT 0)
Joy, Tpxlowgirl, and Donna:

Thanks y'all for your hugs and continued support. Yes, I've really felt bad for days now. Today was another one for me, even though I went no where, I'm still having shaking, cold sweats, fever, HR is still elevated, oxygen levels still dropping.

Hubby noticed that I was running a fever again, he would prefer if I'd still take my temp every couple hours nightly. My BP is still elevated at 146/101. I think that my Dr may be correct in that it's possible that my leukemia is getting worse nono nono I had a total melt down today, realized that I'm feeling scared of dying. Terrified I'm going to suffocate at my end.

Donna, I didn't get to this post, yesterday, after you posted. Happy Birthday my dear dear friend. So, no Friday the 13th wish here, but a very happy birthday, I hope that you had a great day and was able to do something that you totally enjoyed. I love you my friend, you've been thru so much. Its just not fair is it but you still stay positive for others.

I'm sorry you're flaring and I appreciate that you're sending me what energy you have. Sweetie I'll send them right back at you now. I hope your weekend goes really well. I'm praying the flare lessens for you and you begin feeling a lot better.

Everyone have a great weekend. May your weekend have little pain, fatigue, and flare symptoms. Enjoy and rejuvenate as best as you can.

Love,
Barbara
Posted 9/14/2013 12:28 PM (GMT 0)
Hi Barb,

Stop talking and thinking like that. You aren't going anywhere. I know you are scared and in pain and fighting a daily battle, but you will be ok because you never quit. (((hugs))) my friend, I am here when you need a shoulder. I really hope that it isn't the leukemia and that someone gets back to you sooner than later with your test results. Worrying isn't helping your blood pressure either.

Barbara, Barbara she's our gal
Everyone knows she's a caring pal
She's laying in bed with a fever and pain
And if she isn't better soon, she's going to raise cain

I'll quit while I'm ahead, just trying to cheer you up.

Julia
Posted 9/16/2013 5:56 PM (GMT 0)
I am sorry you are not feeling well. I read what happened on the CP board. I just want you to know. I value your input. I wish I could take away your pain.
Posted 9/18/2013 1:07 AM (GMT 0)
Evening my great family:

Sorry I didn't respond right away, I've been totally wiped out the past couple of days. I had some issues over on the CP forum and basically stated that I wouldn't be returning to post there. So, we may get a few folks over here from there checking up on me. Hope this doesn't bother anyone.

Well, yesterday I spent a long time at that hospital. I had my appointment with my GYN/ONC and then the Same Day Surgery folks. I also, stopped by to get my cast removed as it had cut the top of my foot and it was bleeding. First went to the Cast room of course, the on call Dr. was down in the ER waiting for a causality from the Naval Ship Yard, when I arrived. It's truly terrible what those folks went thru yesterday and I'm praying for all of their loved ones. So the corpsman cleaned the wound and recasted me. I'll see the Dr tomorrow, hopefully he'll agree to removing the cast and letting me go into a boot now.

Then off to same day surgery I went. The anesthesiologist was very worried about my surgery for next Weds. Said that he thought it would be in my best interest to give me an epidural and some versed for the surgery. He had spoke to almost every Dr I've ever seen. He went to talk to one of the more experienced Dr's and came back and said I need to talk to your Rheumy.

So, he called my Rheumy, told him his concerns and then asked if my Rheumy thought if postponing my surgery would allow me time to get better. My Rheumys reply was "No, she's as good as she's going to get EVER, she's only going to go down hill from here. You might as well bite the bullet and do the surgery".

The older Dr mentioned that my INR will determine which way my surgery will be done on the 25th. It's looking like it's going to be General anesthesia, which, could cause a potential issue for me. The Dr told me to inform my family that IF we go that route, I may not come off the Vent right after surgery. It's possible that I will have to go the ICU and stay on the vent for 24 to 48 hours. They may have to wean me off of it very slowly. So I can't give any real answers about my surgery next week, except it's being done and I'll either come home the night of, cause I had and epidural, OR I will stay the night in recovery because I came off the vent right after surgery. Worst case I spend a couple of days in ICU on life support. I"ll post once I get home.

I know Julia said to stop talking and thinking the way I have been. It's hard not to think that way though, when your own Dr's are saying this is as good as it's gonna be. I guess I've learned, especially over at the other forum speaking what truly is on my mind, some people don't want to hear it. I'll attempt to sensor things a bit better.

As for today, I could barely stand up and do anything. I fell asleep last night at like 9:15 pm woke up at 7:00 this morning. I went back to bed at 9:00 am and slept until 2:00pm. I'm dragging now that as soon as I finish this post and one other I'm off to bed again. I have to be up early to go to the hospital to get the cast removed and find out my status on my ruptured tendons. Then I'm off to see my therapist, then I'm sure by then I'll need an afternoon nap. My low grade temps, sweating, SOB, high HR, and lowered oxygen levels are still around. My fatigue is so bad I really am out of it like I'd be if I'd take a bunch of pain meds.

Thursday I go and see the radiation oncologist about doing radiation on the warts on my hands again. I'm really hoping that he agrees. The Dr at the Military hospital did it this spring and it worked, but I don't think I got enough of the stuff and the wart is back and big as every. Friday I'll go to Physical therapy, and then relax. I know I will see a Doctor or therapist everyday this week. I just hate it when I have busy weeks like these. To totally top off everything with me, we found out our beloved cat of 17 1/2 years has kidney disease as well as his thyroid problem. I'm not real sure how much longer we will have together, but I know I'm totally broken hearted. He's my baby since my girl has left for college.

Well, that's all the news here. I want to thank you ALL for your love, support, kindness, caring and loving thoughts. It's a real shame not all folks can be that way. I'll keep you updated on how I'm doing. It may come down to having to call me for updates for a bit while I'm feeling so poorly. Normally, my daughter puts in the posts to HW and since she's not here I've got no one to ask at the moment.

Hope you all have a good night and feel better really soon.

Love to you all,
Barbara
Posted 9/18/2013 1:43 AM (GMT 0)
Barbara, you take care of you. I thought that's what these forums were for to help everybody that needs help, give someone hugs and a shoulder to cry on if ya need it and to share the good things in life that happens.

I'm sorry that happened to you. After all you've been through I think you have the right to vent, rant, let it all out no matter how bad it is.

I know i'll listen and try to help even though i'm just basically starting out on this journey. You know more than I do about this stuff but I can empathise.

I have 2 8 year old cats that are my children. They are brothers and I've had them since they were 2 months old. Siamese and Shorthair cross. Zetters and Tom Tom.

Tom is having kidney problems himself. I've had to take him to the dr twice in the last 2 months for a recurring UTI. But I think we finally have it under control at the moment. Dr advised me to change his food to a non gluten, non grain diet.

I kinda hafta laugh because now not only am I gluten free but now I have 2 cats gluten free. Tom has stopped vomiting since I changed him over. Which he did every once in a while but so far in a month he hasn't and both his and Zetters coats are looking a lot better.

I will go now and we'll see you when we see you. Take care of yourself.

Hugs,
Vicky
Posted 9/18/2013 2:23 AM (GMT 0)
Yikes, Barb. Sounds like a long miserable day at the Drs yesterday. I'm glad you were able to get some sleep today, and I hope you'll be able to rest Wed as well.

I hope you are able to get some extra fluids (with electrolytes) down - sweating can get you dehydrated easily and that's the last thing you need.

You talk about whatever you need to talk about. We Lupies are hardy folk and will listen to anything! lol
Posted 9/18/2013 3:06 AM (GMT 0)
I don't mind you venting here at all. There times I need to vent and times I need to hear how others are making it. If all you hear are rainbows and flowers then you're going to think you're worse off than anyone else and get depressed.

I'm glad you were able to rest after such a rough day. I hope your surgery goes smoothly.

Sleep well my friend.
Posted 9/18/2013 10:44 PM (GMT 0)
Hi Barbara I hope you don't mind me posting here, because I really do care for you. I hated to see you leave CP, but I totally understand. I'm sorry you had such a looong day yesterday, but I'm glad that you have been able to get some rest.

Take care. I hope you're having as good an evening as is possible. God Bless You my friend.

love and hugs
Loretta
Posted 9/18/2013 11:25 PM (GMT 0)
Hi Barbara
Wanted to pop in, check on you & give you my support.. you are always in my prayers.
Posted 9/19/2013 2:21 AM (GMT 0)
 

Hi Barbara,

        I was hoping after our conversation over the week-end that life might have gotten a little better for you.  Impressed as always with your upbeat nature, I am amazed how through all of the pain and suffering, you can stay so positive.  I agree with Joy.  This is a place to both vent and receive support.  It's not always going to be easy and this journey is helped by this caring, loving supportive community.  I will keep you close to my heart and in my thoughts, especially as the day of your surgery approaches.  Just take care of yourself.  That is what's so important right now.

Love and Gentle ((((((((((Hugs))))))))))))))

Laura

Posted 9/19/2013 3:20 AM (GMT 0)
Hi Laura, Diane, Loretta, Joy, Lynn, and Vicky:

I want to thank you Diane, Loretta and Vicky for stopping by the lupus forum to check on me. It's very sweet of you all. You are all welcome here anytime to check up on me, or drop me a line to let me know that you're not doing well, if you'd like to let me know. I know our Mod doesn't mind a bit if you stop by to check up on me. I know she put a way to keep track of me in the CP thread. I truly care about each of you too, I'm going to try to keep up on your posts in the CP forum. If you have your email listed in your profiles I'll respond to your threads there if that's okay with you.

I just have this thing once I give my word I feel like I should stick to it you know. I don't know I guess it would be alright to respond to those that mean a lot to me over there and just not mention anything about me. I'll have to ponder that.

Laura, Joy, and Lynn, you are always there when I need you and I can't thank you enough. Laura it was so cool to be able to talk with you on the phone on Sunday. When you mentioned your age I was kinda stunned, I never thought you were the age your are, I though much much younger. I never get that LOL, I finally gave in and had my hair colored. Everyone assumed I was Nikita's grandmother and I would always get senior citizen discounts. That was starting to get old, I'm guessing between the gray almost white hair and wearing oxygen made me look a lot older.

I hope you are all having a good night and that your pain isn't to bad tonight. I hope that you all can sleep well tonight. It really is the pits whether we suffer from lupus or CP it just isn't fair in my mind. Here's praying for all of us to just have a good day tomorrow, may be be pain free or at least a low pain day. I hope the weather is nice and we just can enjoy the day. Oh, my cast is off, yeah yeah yeah yeah I do have to wear a boot and still use crutches for two weeks. Then I can begin to put all my weight on my foot.

Hugs,
Barbara
Posted 9/19/2013 3:29 AM (GMT 0)
Yea for the cast off!
I know you're thrilled to be rid of that clunker.
Posted 9/19/2013 7:00 PM (GMT 0)
Hello Barbara, I am from the CP forum. I pm you via email, a couple of months ago to lend you my support. My name is Sandra, but post under Fusionc5. I am a quiet poster, but when I feel compelled to answer on the forum I will. I hope the Lupus forum does not mind, that I post here.

Barbara, I am so sorry to see you leave. My heart aches for you, and I understand how you feel. I still consider myself a newbie on HW. Although I do not post a lot, I read daily for my own support.

Barbara although you do not know me well, I just want to let you know that I care about you. I pray that your pain lessens everyday, and that you can count on me for support.

Warm regards,
Sandra
Posted 9/20/2013 6:27 AM (GMT 0)
Morning Joy and Sandra,

Joy, you are so right I was thrilled to get the cast off. Took a long shower tonight and scrubbed gently trying to get all my flakey dead skin off my leg. Still not thrilled that I have to stay non weight bearing for two more weeks.

My poor back and hips hurt like heck from using the crutches. After the two weeks pass I can begin to walk full weight. As long as I don't have pain I can stay off the crutches.

Sandra, I appreciate all your support. I do remember that you emailed me. I responded to your email, did you not receive it? If you didn't get it please let me know and I'll send another one to you.

There isn't a problem at all for you to post here. Us lupus folks are pretty laid back and never judge anyone. So, please feel free to post anytime.

Today, my husband and I went for my consultation with a radiation oncologist at the U of MD Med Ctr. They are looking into starting radiation treatments on my thumb again, to treat the HUGE wart on my thumb.

I originally did 5 sessions at Walter Reed and it worked really well, but once I stopped treatment the wart grew back. My Derm feels I needed more radiation to get rid of it.

The military Dr refused to give me anymore so the Derm referred me to a colleague of his. Looks like they will restart treatment in a couple of weeks. Said that everyone there had reviewed my case, and I'm a VERY complex patient.

All the radiation oncologists will sit down and figure out how best to treat me again. I was told that I could potentially lose the tip of the thumb. I said I understood and that I had already asked to have that thumb amputated since its useless. Will let you know when I'll start treatment again.

Other than that taking all day, I have just been really wiped out. My oxygen levels were pretty low at UMMC, I'm not sure what's going to happen. I see my oncologist on the 24th. He's away TDY (temporary duty) at another military facility in TX. He hasn't returned my email
but my Cardiologigst called me and he spoke with my pulmonary Dr and reviewed all my labs and echo. Everyone, except for my oncologist, he's not here, say that all my symptoms are leukemia related.

I've been told to rest as much as possible and stay away from large crowds. Basically, not a lot to do at this time. Well, I'm gonna try to sleep some. I hope all my favorite folks are sound asleep by now. Hope everyone wakes up feeling good.

Hugs,
Barbara
Posted 9/20/2013 11:32 AM (GMT 0)
Barbara you are so sweet to wish us a good nights sleep when you need sleep desperately. I too would be extremely depressed if I had medical appointments every day. I try my very best to keep my appointments to one per week. For you that's just a dream. Then you have to throw on the pain, surgery, radiation treatments, and feeling like crap. You are a very brave and strong woman. Even though Nikita doesn't know it yet, you've set an extraordinary example for her. I hope to go back to sleep/take a long nap soon. Love Ya, Donna
Posted 9/20/2013 7:49 PM (GMT 0)
I think if I was you I would go ahead and tell them to cut off the tip of my finger with the wart on it.

You're a an inspiration to me. You fight like crazy against this monster who tortures you day in and day out. I'm not sure how I will be when it starts attacking me worse, but I will think Barbara went through this fire and I will battle it with the same strength she's showed me.

((((((((((((((Huggie)))))))))))))
Posted 9/20/2013 8:48 PM (GMT 0)
Donna and Joy:

You two rock!!!!!! You sure know how to lift my spirits, when I'm feeling so down. Today has been hard, have read some harsh things on various forums. Not sure if they were directed at me or not, but I'm just trying to give and get support. I know I can always count on my lupus family. We are a unique bunch and we certainly understand multiple issues.

Joy, I'm all for cutting the tip off the thumb LOL. It's Doctors that have an issue with it. I even I could try to cut it off myself while fixing something to eat nono nono nono they say. Guessing since blood thinners that I might bleed a bit.

Weekend is here, and I'm thinking I may see my girl sometime this weekend. She's torn, she wants to come home and doesn't want to. I offered to go over and get a room and spend the night and she said that it wasn't necessary. Don't know if she's worried or not, kinda think maybe she is a bit, about my upcoming surgery on Wednesday the 25th. Thinking maybe just maybe she might want to see me prior to going under the knife.

Did PT today for my right foot Achilles tendonitis. My PT said that my left calf pain that I'm having is normal. I noticed that my left calf hurts a lot, but he said that my boot has my foot at a 90 degree angle which makes me have more pain in the calf.

Otherwise, just plan on resting and taking it easy around the house. Hope you both have a good weekend and have low pain levels.

Hugs,
Barbara
Posted 9/21/2013 1:26 AM (GMT 0)
Hi, Barb.

Wanted to pop here and see you. I, above all people, understand why you are doing the postings about "you" here. And I don't mind coming here to find you.

Thank you for your recent kind words at the PC site for me. Always appreciated.

While we are indeed "pain buddies" to the end, your situation is much more complex and dire than even mine, so I often feel bad for you to even have to worry about me.

You still have lots of good and true friends watching out for you, and that's so important in your situation. I am one of those, forever.

Sleep eludes both of us, for different reasons, and that just adds to the misery. There are times I wished I had the ability to sleep away most of the day, but sleep eludes me, still average at most, 4-5 hours per night, and that's made up of very broken sleep riddled with endless nightmares. Then I have to count on getting in perhaps an hour or less of sleep during my afternoon nap, but many days, hurting too much to relax enough to sleep. It's that being awake 18-20 hours a day which makes it hard.

Hope you can see even some small improvement in your many woes, anything would have to help, any type of relief or let up, but I know that is asking a lot in your case.

Can only ask you, to follow my example (and you being doing this well on your own) and never give up hope, keep on fighting the good fight. Your struggles may not end in this world, but we can always hope to pain free in the next world one day when its our time. I know that's a strange thing to say, but I feel you of all people would understand my sentiments.

Thinking of your always, whenever I start feeling in the dumps about my own situation, I remember you and your endless sufferings, and it helps bring me back to my senses.

May you be resting peaceful as I post this.

Your friend always,

David
Posted 9/21/2013 5:03 AM (GMT 0)
Hey Barb & everyone else as well -

Glad your ankles are getting better, it's really awful to have trouble getting around, esp. when already feeling awful.

I hope you get a bit of quality time with your daughter this weekend, you sounded so cheerful just thinking about it.

I hope everyone is having a pain-free sleep right now... I'm up driving myself nuts thinking of everything that needs to be done before the painters come bright & early (ICK!) at 8 am Monday morning.

Cheers,
Posted 9/22/2013 7:32 AM (GMT 0)
David and Lynn,

Thanks for the very nice responses. David, I truly appreciate your posts. Yep, we are "pain buddies" and I do understand a lot of what you are thinking and feeling.

I think it's because we have to at times look at our situations differently. Do we want to be cancer free or in total remission, YOU BET! Is that going to happen? NOT BLOODY LIKELY! So we look at our futures in a different way.

I'm really sorry that you have such a hard time sleeping, but I sure understand it. I've been stressing out a lot lately and it's like my mind won't shut off when I lay down at night. I hope that you are currently getting some restful sleep right now.

Lynn, you can't imagine how thrilled I'm to be out of that cast. Even though I'm in a camwalker boot, I'm still using crutches for another 10 days, none weight bearing until that time passes by.

I enjoyed my day with my girl. I was disappointed that I didn't get up to the room, but maybe next time. She said even IF I had my boot off it would take me at least 15-20 mins to climb to the 3rd floor.

I stayed with her longer than my hubby liked, it was dark and pouring rain when I left. Didn't get home until 8 pm, you know he worries about me. Of course, my gas light came on 35 miles from home and I didn't have my triple A card with me. Managed to get home w/o running out, whew close call. Hubby will have to put some in from his gas can.

I hope that things go well with the painters on Monday. You know, my door is always open, should you feel a need to run away. Hope you were able to enjoy watching the old house in your neighborhood move yesterday. Give Shadow a pet from me. I too, hope you are sleeping.

Well, time for me to try to sleep. Everyone have a good Sunday, talk with you soon.

Hugs,
Barbara
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