Friends of Barbara Lee

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Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/3/2013 9:32 PM (GMT -6)   
Hi folks,

Just wanted to let you know that Barbara is having some eye issues right now & thus isn't online these days. She had an ulcer on her cornea that was scraped off this morning -- says it's the most intense pain ever & she's only allowed 1 drop of eye pain meds every 2 hours. Dr's say takes 2-3 days till initial pain gets better.

Meanwhile she can't really open the eye and isn't up for read/typing/texting all those sorts of things.

Otherwise everything seems to be holding steady and I'm sure she'll be rejoining the conversations as soon as she is able.

Best wishes to all,
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 1/4/2013 1:14 AM (GMT -6)   
Ouch! Tell her I hope she feels better soon.
I'm sending get well thoughts to her.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 1/4/2013 8:48 AM (GMT -6)   
So sorry to hear this. Barb really needs to catch a break. She has been through so much. Praying for you Barb and hope the pain subsides quickly.

Love you
Amy
Lupus Moderater


dialysis from lupus nephritis

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/4/2013 11:46 PM (GMT -6)   
My thoughts and heart go out to you Barbara. You have been through so much lately!!! I know that you have lots of support here.

Laura

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 610
   Posted 1/6/2013 3:11 AM (GMT -6)   
Hope she feels better and get well soon.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 1/6/2013 12:46 PM (GMT -6)   
Barb just can't seem to get a break. Hope she's better soon.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/9/2013 9:02 PM (GMT -6)   
Hi all thanks for your well wishes. I'm glad to say according to the eye doctor my cornea is healing. My vision is still 20/70 in that eye, but the pain is gone thank goodness.

I've never had so much pain as I did when I woke up 4 hours after my eye surgery. They scraped my cornea, I was at a solid 8 out of 10 for 3 solid days. I spent laying in bed from 12/31 to 1/6 in a darkened room with my eyes closed. The ulcer developed on the 31st. It felt like I had shards of glass in my eye.

I also received a steroid injection I my L5-S1 area w/o any success yet. Will get another next Wednesday. Of course all this has pushed me into a flare. ALL joints are red, swollen, and painful. I walk like I'm 90 at the moment. Feels like the pericarditis is back and I needed 5 liters of oxygen today.

Get next Benylsta infusion on the 23rd. I really really am sick of all this. I have very little quality of life enjoyment, and am kept to home mostly as I have NO immune system. I have to avoid crowds and we have strict rules about visitors in our home. My WBC is down to 2.3 and my CRP is at 5.6 right now. I honestly just don't know how much more I can handle.

I'm hoping you all are doing better than I am.

Hugs,
Barbara

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/9/2013 9:16 PM (GMT -6)   
Hi Barbara,

My heart goes out to you. I cannot imagine what you are going through. I will keep you in my thoughts while sending you a HUGE hug across these many miles of Universe.

Laura

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/10/2013 12:39 AM (GMT -6)   
Wow, Barbara. When it's rains it pours.....

((((((((((((((gentle hug)))))))))))))))

Hang in there and get better soon.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 1/10/2013 9:09 PM (GMT -6)   
Hi Barbara. As always, I admire your stamina, but I'm so sorry about your QOL. Benlysta has been making me sleep for days at a time with little energy left to care for my basic bodily functions. It can only get better! Lots of hugs and prayers for you Sweetie. Love Ya, Donna 

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/10/2013 11:07 PM (GMT -6)   
Hi Donna, Joy, and Laura, thanks for the hugs and well wishes. I'm feeling so down and out for the count. I guess I'm just at the point I'm ready to get off the auto immune train.

I was hoping the Benylsta would help but so far only negative stuff is happening. I will see my Rhuemyin Feb, but I do see the new dermatologist that's caring for my wart issue. I will see him on Monday. I'm hoping that he can confirm IF I can take my Benylsta, injectable methotrexate, and the IV anti viral medication at the same time.

Today has been extra difficult. The pulmonary therapist that runs my rehab can be quit difficult. I had to sign a contract to commit to doing rehab at least twice a week. Well with my issue with my eye stuff I hadn't been there since the Thursday before Christmas. So if I miss to many times I can be discharged from the maintenance program.

So off I went today to rehab. Mind you I'm hobbling all the time I hurt so bad. I did do my exercises, but my oxygen saturation rates were really low and showed I was struggling. At one point my o-2 was at 84%. But I forged ahead and finished. I got home and sat down and I was out for the count. I broke a tooth and a filling last week and was suppose to be seen at 2:30, I had to cancel, I just couldn't move at all.

Now I can't sleep nor can I take any pain meds as I've reached my max for today. I hope eventually I'll be able to sleep, as I have a 10:30 dental appointment that I desperately need to make.

On an up note my daughter finally passed her driving test WOO WHO, she tried twice and couldn't parallel park so she failed twice, she gave up and we didn't pressure her. Last weekend she said she wanted to try, so she practiced and we went yesterday and she passed. We are so so very proud of her. She had a good fall semester and we are just so proud of her. She'll be 20 next month and we have seen a lot of maturing in her. Last year was hard for her, she went from being one of the two primary caregivers I have. It effected her a lot I think, more than she let on I'm sure.

Hope you are doing well and having low pain and fatigue days. Donna, you sound exactly like I did with my first Benylsta infusion. I'll pray that they get easier for you. Contact me anytime if you need me. I'm not allowed out in large crowds OR even to the store unless it's a 24 hr Walmart and I go in around 1am. Take care all and try to avoid the nasty flu that's out here.

Hugs,
Barbara

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/13/2013 3:01 PM (GMT -6)   
Hey everyone still feeling quite bad. I'll get my next steroid injection into my back on Wednesday.

I've barely been able to walk, not sure why. My heels hurt so bad I limp when walking. Hubby rubbed my feet last night, maybe can talk him into doing it again.

My eye is feeling better, but my vision is still very blurry hard to see far away even with my glasses on. Oh well something is gonna give at some point.

Catch you all later I'm off to my comfy bed, and cuddle with my cat. Hope you all have a good day.

Hugs,
Barbara

stressed to the max
New Member


Date Joined Dec 2012
Total Posts : 3
   Posted 1/18/2013 5:19 PM (GMT -6)   
Barbara,

I'm sorry you're having such a bad time of it right now but I and all the others know that their is a brighter day ahead.



Rose

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/18/2013 10:07 PM (GMT -6)   
Hi Barbara,

I am so, so, so sorry that you have been feeling misearble. I had hopes that the Benlysta would give you more relief than it has. One thing I notice is that it seems to "wear off" by a week to ten days before my next treatment. Without Prednisone, I end up taking a pharmacuetical soup to help me get through the pain and discomfort. My hope is that I see more of a positive effect in the next couple of months. IMy gut tells me that being on the Prednisone, even at 7.5 mg, was helping me through the treatments. The Solu-Medrol they give me prior to infusion also helps....usually the day after, I feel pretty wonderful!!! My plan for this three day week-end is to rest and take care of myself!!!

Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/18/2013 10:47 PM (GMT -6)   
Thanks everyone for all your support, I appreciate it a lot.

Warning I'm gonna vent a lot I guess. Since I've been on all my immuno suppressant drugs my issues with warts have been a struggle. Now they feel I have an underlying immune problem, more than the drugs.

My thumbs are deformed and everything has been used to try to treat them. Over the last year I'm getting them in other areas. So currently I'm in the hospital receiving a antiviral medication that is used in HIV/AIDS patients. The major side effect is kidney issues and as we all know lupus and kidney issues=problems.

I am normally in the military hospital in Bethesda MD. However, they do not give this drug out. So I'm in a medical center in the inter city of Baltimore. HUGE difference and not for the good.

Just now my nurse stopped my IV fluids and is suppose to heprainize my medi port. She says to me we don't carry this anymore, ARE YOU KIDDING ME! If my port doesn't get heprain it will form a clot. I know they have heprain on the transplant ward, the ICU, and the Cancer ward. If my port clots I'll be in serious trouble, I'll have NO IV access anymore.

They didn't have a bed for me until 10pm last night. We had to park 3 blocks away from the center and walk here. I'm on oxygen 24/7 and barely made it to the front doors. The neighborhood is filled with people who aren't so nice let's say. When my hubby who has been in combat and been shot at in Iraq, left last night he was uneasy as he returned to the car.

I have NO immune system, and I'm in a room with a lady who has a fever and is on IV antibiotics and they aren't sure what's wrong, maybe severe gout or an infection. I'm told sorry we have no isolation rooms at this time. Last night as they checked me over they found I have another nasty case of pericarditis. I'm on a heart monitor, and early this morning they awakened me as my heart was beating funny. Then about one hour ago, my heart rate went off and they rechecked me.

Hubby, had just called and is now worried about me. I have a major blood clot in my SVC and I'm suppose to get a blood thinner shot twice a day, my last shot was at 10 pm last night IT'S BEEN FREAKING 24 1/2 hours. I could go on more but I need to stop before I get you all get sick of me venting.

Oh one more thing I thought I was getting this drug once be observed and repeat it in a couple of weeks. Well, I just learned I'll get it daily for then next three days and if my kidney function stays good they may let me finish the next several treatments outpatient. Would have been nice to have a clearer understanding, and I'm just frustrated. as He!!. I sure hope they don't kill me while here. Okay I'm done.

Hugs,
Barbara

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/18/2013 11:22 PM (GMT -6)   
Oh, man, that all sounds horrid! So sorry, and I sure hope things start looking up SOON!
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 1/19/2013 1:03 AM (GMT -6)   
Sorry you're having a hard time. Get your doctor in there ASAP and tell them you need orders for the hepria (?) shot. If he doesn't show call his office.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, 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 1/19/2013 3:07 AM (GMT -6)   
Hey Joy I wish I could get my Dr in here, but the military Drs normally do not practice in civilian hospitals period. They also DO NOT have an answering service after 4 pm. If you are sick that badly you go to the ER. If the ER thinks you need to be admitted, they page the internal medicine team that's on call.

If they agree you need to be in, they admit you, and they follow me. They email my PCP but she never comes to see me. That team is in total control of my care. If they feel they need they will call my Rheumy, Oncologist, etc, but I don't see my Dr. All departments have a Dr or Drs in that speciality that are taking care of inpatient care. If you're lucky sometimes it may be my regular doc but 9 times out of 10 it's not them.

Also, since my regular Dr are military, unless they are on call, they don't work weekends or holidays. Gotta love that NOT. The medical center where I'm at know kinda works the same way. I have three specialitys with their fingers in the pot. Each one covering their speciality.

I know for sure the Interal Medicine Dr that I saw yesterday morning will be here bright and early, he said so. So I will have a CHAT with him. I figure I need to hold on another 4 hours or so

I hope you are sleeping, I know you have been having some trouble sleeping too. Hope you have a good weekend.

Hugs,
Barbara

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/19/2013 6:50 AM (GMT -6)   
Barbara huggssssss

Perhaps you can call your doctor and say you want a second medical opinion. He could over see your care, even without steping foot in the hospital. I recall how insane the military drs schedules can be. We had to take my son through it when we were on RnR on base, and poor baby got bit by the jelly fish. Rilea has beach access, unless flags are up then we can't go. I bet you know what I mean hehe. He left the jelly fish alone after he got stung and now listens when I say "Don't touch that" on the beach.

I do wish you a speedy recovery! Nope, I'm not sleeping.. I was woken up by a monkey. He fell back to sleep, but sigh I can't. Huggss praying for you hon!
~Moderator - Allergies & Asthma , Alzheimer's~

"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ And Doctor's Worse Nightmare
DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/19/2013 1:22 PM (GMT -6)   
Still thinking of you and hoping things are *much better* by the time you read this!
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 1/19/2013 4:19 PM (GMT -6)   
Was awake until 3am last night due to my trigger points hollering. I couldn't find a sleep position without pain. Ugh...
Did manage to sleep until 2pm today. Still in my PJs at 4pm. :)

I hope you're getting better care.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, 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 1/19/2013 9:10 PM (GMT -6)   
Well it's been a stressful day for me and I'm functioning on about 3 hours of sleep.

I have to say I'm being very polite and not losing my temper. I still have a roommate and I've been assured that she does not have an infection that puts me at risk. Apparently, she has a very serious case of gout and it running the fever from it. The poor woman is in so much pain she cries out when they move her blanket. She has been here since Wednesday and can't even get up or move her legs.

She screams and cries as they attempt to put her on a bed pan. I fell asleep about 4:30 this morning and was awake 2 hours later. I did sleep for about 1 hour more this afternoon.

As to the issue of heploc of the port I've talked spoken to the Head Dr, the Charge Nurse and haven't succeeded in getting it. The Dr agreed that if my port cloths up I'm screwed. They say it's the medical centers policy that heprain isn't used on the medicine wards, period! That flushing it with saline is enough.

I have to many chefs in the kitchen and have been given various updates. I DIDN'T get another dose of the medication today as they said. If my kidney function is stable I will be discharged tomorrow sometime. Then I'm to see the specialist who ordered this treatment and if he feels I can get however many infusions I need outpatient. I just emailed my PCP at her personal email, I'm considering not allowing them to deaccess my port tomorrow and going directly to the military hospital to attempt to have it removed and heploc done on it before removing the needle.

It's a federal holiday on Monday and I don't even know if my Dr is even in town or if she'll even see my email. Just so so frustrated, I just hope my black cloud doesn't rain on me yet until I'm out of here.

Hugs,
Barbara

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/20/2013 10:51 AM (GMT -6)   
Hey all, just wanted to let you know I'm going home this morning. I never heard from my Dr, as she's military she had at minimum a three day weekend, and possibly had Friday off.

She works really long hours and has two young boys, they may have gone to her parents or somewhere fun.

I posted on the CP boards a bit more detail as to why I'm risking my health over some warts. If you google Dede "The Tree Man" the Dr who took care of him is treating me.

Mind you I'm NO where like Dede is, but I'm afraid I might end up that way with my hands. I've been begging for them to amputate my thumbs, I also have much smaller ones on my other fingers too.

Over the past month they are sprouting up all over the place. I'm already ashamed of how I look. Being on steroids 24/7 for 12 years has taken me from a fairly normal looking woman, to someone who won't allow any photos taken.

I bandage my thumbs and fingers when out in public usually, but getting home and removing the bandages it pulls at the skin and they bleed, I bump them they bleed and cause terrible pain. I don't want to give them to anyone, but I've been assured that I can't give them to others, but I'm ashamed of it anyway.

I hate my life, lupus has taken so much from me. Ok I'm stopping. Thamks for your well wishes and support.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/20/2013 3:15 PM (GMT -6)   
I'm sorry you're in misery.
I've seen the documentory about Dede. I hope you're not that bad. :(

I hope they can find a way to cure you soon.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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

NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 1/21/2013 3:04 PM (GMT -6)   
Hang in there Barbara. You are in my thoughts and prayers. I hope you are feeling better soon.

Hugs,
Mary Ann
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