I Can't Stand The Pain

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/9/2012 6:23 PM (GMT -6)   
Hi All:

Well it's 8 pm on Sunday night and I have spent the whole weekend in severe pain. My lower back is killing like heck. My pericarditis is still bothering me pretty bad. The medication they gave me to treat the pericarditis causes the big "D".

I feel short of breath even though I am on oxygen. I know I need another blood transfusion, guess I will call my doc tomorrow. I just don't know if I can muster up the strength to get there.

My oncologist and I recently had a serious discussion about either a stem cell or bone marrow transplant. He feels that I would be trading one disease for another. He reminded me that with either type of transplant I will have to use donor marrow. Because of that I will have to continue to stay on immuno suppressant drugs. He also told me that I would eventually relapse and I will die of my disease anyway. I just feel so alone and heartsick. My daughter mentioned that she doesn't expect me to live till I am 60. I have missed out on so much with her, I really hate being sick.

Please send some prayers and positive energy my way. I gonna go back to bed. Hopefully, tomorrow will be a better day for me.

Hugs,
Barbara

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 9/9/2012 7:18 PM (GMT -6)   
Hi Barbara Lee,
 
     I am so, so sorry that you are experiencing so many problems right now.  My heart goes out to you.  I will keep you in my thoughts and prayers.
 
Laura

NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 9/9/2012 7:52 PM (GMT -6)   
Hi Barbara,

I'm praying for you. Hang in there and don't give up. I know it is hard but just take it one day at a time. Make sure you call your doctor tomorrow. It is important for you and your daughter.

Take care and hugs,

Mary Ann

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/9/2012 8:07 PM (GMT -6)   
Sorry you're having to deal with this.
Hang in there there is an answer for you.

Why can't one of your children or siblings give you a donation?
Joy
When life throws you lemons....
Pick them up and throw them right back at them! :))

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 9/10/2012 7:44 AM (GMT -6)   
You got this. Know I am praying for you and keep you in my mind often. I am always here if you need to talk (((hugs)))
Amy
Lupus Moderater


dialysis from lupus nephritis

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 9/10/2012 8:00 AM (GMT -6)   
Hi Barb. What a terrible weekend you've had and I know it never lets up. I'm so sorry. I think that if I were in your position I'd get a transplant if your quality of life would improve, but I'm already on Cellcept anyway. I'm praying for you Sweetie and sending all the positive energy I can muster. Love ya, Donna

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/10/2012 5:00 PM (GMT -6)   
Hey All,

Thanks for the words of encouragement I really appreciate it. To answer a couple of questions that were asked. Joy, I was adopted at the age of 3 months old. I have no idea of siblings or even where my biological parents are. I did meet my biological father back in 2001 but I haven't had any contact with him since two years ago. As for my daughter I am very torn, I have spoke with people who have been donors for a family member, and then their loved one dies. They say the guilt is hard to deal with. I really have to do some deep soul searching about it. My daughter has Asperbergers Syndrome and she already has anxiety issues about me.

My oncologist has managed to get special permission to give me the Benylsta infusion in the chemo room. We are now awaiting for the company that makes the drug to train the nurses. The Dr is hoping I will have my first infusion by October 15th I will just have to wait an see.

My new cardiologist called a couple hours ago and mentioned that my QSR wave is extended. They can see what's happening with my heart, since putting the implantable cardiac monitor in my chest. He was going to meet with another Dr and get back to me.

Thanks for all the loving support and I hope you all have a good night.

Hugs ,
Barbara

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 9/10/2012 5:22 PM (GMT -6)   
Just saw this and wanted to add some words of encouragement. My heart goes out to you and your family. I will be keeping you in my prayers.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 9/10/2012 9:30 PM (GMT -6)   
Hi Barb,

((((hugs)))) I am home again now if you want to talk. When do you see Dr. Byers again? It isn't easy to live with pain everyday and it can wear a person down, but thats where we all come in to support you always remember that. Lets hope the Benylsta turns out to be your miracle drug. I hope you can get another blood transfusion asap to give you more energy. I know when I need one, I get short of breath also. Not a nice feeling! As for you not living past 60 - your a tough old bird (lol) and you will probably be training these resident doctors when your 80. You may have missed some important events in Nikita's life, but you are there for her everyday in every way that counts.

Take care my friend and we will talk when you are up to it.

Julia

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/11/2012 7:38 PM (GMT -6)   
Hi there,

I have had the worst day ever sad sad sad by the time I got to my car in the parking garage at the hospital I was in tears. Now I normally stay pretty stoic thru most of what happens as far as my health goes. However, today I just fell apart. I have mentioned before that I am struggling with warts on my thumbs. Both thumbs are in terrible shape, and the pain from them is really high. I can not put my earrings in or button up any of my shirts.

Well for the past two weeks, my dermatologist put a cream with a chemo drug in it and then wrapped one on my thumbs the left one. I am right handed, so needless to say I had some difficulties with doing things that required two hands. I wasn't allowed to get the thumb wet. Anyway, the Dr removed the bandage and numbed up the thumb and began to cut away the softened parts from the chemo being on the wart. Well I managed okay until he started cutting on the pad part of the thumb. The pain was unbearable, he injected more numbing stuff and tried to cut again. I couldn't handle it so we stopped.

They then wanted to laser my other thumb and two other fingers. Well, left me say this I nearly jumped off the table as each zap came. They put goggles on you and you can't see a thing, they'd count to three and ZAP skull skull skull skull skull I thought I was going to kick him. Anyway, they keep saying the reason the warts won't disappear is because of my immuno suppression. Well, they've found that my immune system has a bigger problem and it's not just the drugs I take. They don't know what to do, I've suggested just cutting the thumbs off, they weren't to open to that suggestion.

My fingers hurt so badly tonight. I cried all the way home today. I am having issues with my heart, my thumbs are totally useless plus I am now getting warts in other areas. I HAVE HAD IT, I can not continue to fight anymore. I feel like a HUGE burden to my hubby and my daughter. I have no friends locally and I spend my days either at the hospital or here alone till hubby gets home. By then I am totally wiped out and just want to crawl in bed with the covers pulled over my head.

Please pray or send positive thoughts my way. I hope that tomorrow is a better day. I just don't know how much more I can handle. Thamks for letting me vent.

Hugs,
Barbara

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/11/2012 8:18 PM (GMT -6)   
Oh, Barbara

I am so sorry you've had this kind of day. I saw your post Sunday and on the chronic pain forum. I can't express how much I wish I was a doctor or somehow had some magical way of helping you out. You know I'd never let you go to the Dr alone like that.

I pray that you'll sleep thru the night and that the pain will be less in the morning. You know you can call me anytime.

Love Lynn
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2012 9:17 AM (GMT -6)   
I'm sorry you're having such a battle right now.
Is there a close friend who you can sit with while waiting for your husband? I hate the thoughts of you being alone. It's not good for you.

((((gentle hugs)))))
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/12/2012 4:35 PM (GMT -6)   
Evening y'all:

I have to say I truly love you all. I can not express how much your support means to me. I crawled into bed at around 1 am, I got up at 6:30 this AM and took my meds and went back to bed. I really didn't sleep soundly as my Dr's kept calling off and on. Anyway, I got up at about 11:00 am. I managed to pull myself together somewhat today. My thumbs still hurt and look awful.

It's currently 6:15 pm and I'm sitting in a chair on a pillow in the front yard. It's a beautiful evening about 77 degrees out and little humidity. I'm posting to you all, and DH is washing his car. Of course I call it the mistress LOL, sometimes she gets more attention than I do. We've been married almost 28 years and I've just become used to the mistress LOL.

My pain is still as bad as it was last close night, I am nearly out of my allotted break thru meds for the day, so once hubby is done with the mistress, I'm hoping he'll help me take a hot hot shower and then place my lidocaine patches where I need them the most. I will rewrap my left thumb with chemo tomorrow and follow up with derm docs next Thursday.

My friend who I see every couple weeks is out of town. I basically have NO ONE to sit with me in these tough times. Like I said last night I'm normally very stoic with most things, but I feel like I'm having a nervous breakdown or am waiting for something bad to happen. Our friends 15 year old son passed away on August 18th, then my step-father passed away on the 21st of August. They say deaths come in three's. I just have this really unsettling feeling. I just can't seem to handle to much right now.

Please keep the prayers and good energy comming my way. I'm slipping down a slope with nothing to hang on with. Hope you all have a good and pain free as possible evening.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2012 5:25 PM (GMT -6)   
Do you have chronic illness councelor you can talk to?
I've heard they can help when it gets too much for you.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 9/13/2012 6:56 PM (GMT -6)   
Checking in, I pray today was a bit better for you than yesterday. Remember, we are all thinking of you and sending positive energy your way. ((HUGS))
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

XSusanX
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/14/2012 2:56 PM (GMT -6)   
"My daughter has Asperbergers Syndrome and she already has anxiety issues about me."

My son has Asberger's Austism, too. Lupus runs on my father's side of the family, austim on my mother's... but I wonder sometimes if these two are connected. It seems that family members who have autistic children suffer the same health problems I am facing.
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