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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/27/2012 6:11 PM (GMT -6)   
<copied below>

Hope you are all doing ok tonight. Oh my Post is Listed as Warning Major Vent, in the CP forum.

Hugs,
Barbara

Post Edited By Moderator (Lynnwood) : 11/27/2012 8:56:29 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/27/2012 9:52 PM (GMT -6)   
Copied Post From Barbara --

Hey All;

I'm sorry but I need to unload a bit. I HATE my QOL, I literally don't know how much more I can take.

I tried cutting my steroids back by 5mgs last week, and boy oh boy am I paying for it now. So today I increased them back up and will see what my Rheumy has to say on the 19th. I'm so frustrated with having severe Lupus and moderate RA. All the auto immune issues are just going down hill for me. I now have had 3 doses of the Benylsta and I've not noticed ANY GOOD results, but I have several of the BAD results.

I'm struggling with really bad insomina, I'm irratated a lot of the time. I've NEVER suffered from anxiety and now I'm dealing with that. I also am experiencing depression, I just want to crawl into a hole and just die. I will see my PCM on Monday, she upped my cymblata prior to starting the Benylsta. She also told me if I needed it she would give me Ativan for anxiety.

I am SO disappointed that I can't go ahead with the treatment for my warts. They have been on my left thumb for over 12 years now, my right thumb just recently started. I also have them growing on the back of my foot and on my belly. My L thumb is so bad it doesn't even look like a thumb anymore. I can't button my shirt, can't put in earrings, can't do anything that requires use of my thumbs. I'm just so so frustrated, I FEEL like drinking a bottle of vodka and hacking the thumbs off with my meat cleaver. I understand why they want me to wait, but it's like my black cloud NEVER goes away.

I received an email from the Dr I saw at NIH last night, the tone of the email makes me suspect that they really believe I have this genetic disorder. I already know that my MDS has moved closer to becoming full blown leukemia, IF it was caused by the drug I took to treat my lupus it's a lot harder to treat. If my MDS is caused from this genetic disorder, it will be easier to treat the MDS.

Today, I'm sitting here feeling sorry for myself and I know I shouldn't be, but I just can't help wonder what did I do in life to deserve ALL this crap. My back is soooooooo through the roof pain wise and the PM Dr is out on vacation until the 12th. My injection will be on the 13th. I know from yesterday's normal lab work I'm really anemic again and will be needing some blood soon.

I have wished for years to have research Drs look at me and figure out the odd symptoms I have. Now that I have that, I'm reeling, my hubby told me just a minute ago, "yes we wanted that, but with good results". We know IF I have the genetic disorder I will need a bone marrow transplant, but with my lupus, RA, and Fibro it's going to put me at a much higher risk. I'm afraid to ask what my odds are.

I'm sorry for complaining I know there are folks here that are so much worse off than me. I know I should be thankful that I'm still alive, but what I'm facing over the next few weeks feels like Mt Everest. I just don't know IF I can continue on. Thanks for reading this looong vent, I know you all understand the feeling of being overwhelmed and sick of being in pain 24/7.

I wish you ALL a good week and I hope you have low pain days. For those who have appointments and procedures I hope they go well, and have good results. Thanks for being there.

Hugs,
Barbara

Post Edited (Barbara Lee) : 11/27/2012 5:01:56 PM (GMT-7)
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 11/27/2012 11:33 PM (GMT -6)   
(((((((((((((((((gentle hug))))))))))))))))

You sound like the overloaded camel...you know, "the straw that broke the camel's back".

When I'm overloaded I think of that old saying...
"When you feel you're at the end of your rope, tie a knot in it and hold on for dear life."

There is sunshine somewhere in all of those clouds. You've just got to survive the storm.

Sorry, I'm in a colloquesim (sp?) mood tonight. :/
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! :))

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 11/28/2012 1:05 AM (GMT -6)   
So sorry you are faced with such a heap of problems.  Anyone would be overwhelmed and it's not easy to find perspective when you're exhausted, frustrated and in considerable pain.  Hope some of the pressure lifts and you get some good news and better days.  Hang in there......
I don't know who said this - but it helps me on the bad days:
" Courage does not always roar.  Sometimes it is the quiet voice at the end of the day that says I'll try tomorrow".
 
Blessings to you,
 
Lucy

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 11/28/2012 8:38 PM (GMT -6)   
Hi Barbara,

My heart really goes out to you. Pain can be so debilitating, not only physically, but emotionally as well. This is the perfect place to vent. We have all been there is some way, shape or form. Right now I am listening to the rain outside my window and I am gently reminded by that sweet element to embrace softness and taking plenty of rest when we need it. It sounds like you could use a wonderfully supportive hug.

Laura

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 12/11/2012 10:01 AM (GMT -6)   
Hi Barb, the past few years have been so hard on you. I wonder if you have ever tried yoga and meditation. I started taking yoga classes two years ago and the changes I have felt (and that others have seen) are phenomenal. Just sitting quietly with my teacher three times a week and listening to my breathing, becoming centered, and meditating has had a cumulative effect. The physical benefits have been pretty remarkable on this old 63 year old body. It has been so good for my pain and my joints. I take very gentle classes. Assuming that you don't feel well enough to get out and take a class, you can find them on tv, online, or in cd form. And by the way, when I started, I was overweight and walking with a cane. After just a few months I stopped using the cane and had lost a great deal of weight.

It's good to reconnect Barb. As always I'm sending prayers your way.
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

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 12/12/2012 7:06 AM (GMT -6)   
How are you doing now Barb? Been thinking about you!!!
Amy
Lupus Moderater


dialysis from lupus nephritis

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/12/2012 10:15 PM (GMT -6)   
Hi Patty and Amy:

Well, let's see how am I? I waiting for my genetic test results to come back. I need a left sided heart cath and get my 4th dose of Benylsta on Friday.

Patty I do meditation daily as well as bio feed back, I can't do yoga because once I start bending over I can't breath. I'm now up to 4 liters of oxygen when I walk, 2 when just sitting around. I do go to pulmonary rehab twice a week, I walk on a treadmill at a .5% incline and at a speed of 2.1mph, with 5lb weights on my legs for 30 minutes. I also ride a physiobike for 15 minutes at 8.0mph, I also lift 5lb weights and do stretching. My pulmonary hypertension is fairly bad so the Dr wants me in a controlled environment. There's a respitory therapist monitoring me the whole time.

I'm having issues with the Benylsta, I'm cranky most of the time, I'm having anxiety issues, insominia issues, and depression. The Dr gave me some atavin for my anxiety but said to only take it on really bad days. She increased my cymblata and pain meds.

My warts are so bad on my thumbs I swear on of these nights I'm gonna cut them off. I have a dermatologist who has experience with other drugs, but until I hear back from NIH on this genetic disorder no treatments for the warts.

I hope you both are doing well and I appreciate your well wishes and prayers.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/12/2012 10:40 PM (GMT -6)   
I'm surprised they are not trying cryo on your warts, Barbara.

Hang in there. I hope they can get you straighten out 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! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/12/2012 11:13 PM (GMT -6)   
Sorry things are stuck in a waiting pattern, Barb. It's amazing that you can do that much exercise!!! Hugs.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/13/2012 9:05 PM (GMT -6)   
Hi all, Lynn I'm amazed I can do that much exercise, but I take usually 5 to 10 minute breaks between things and I'm on 5 liters of oxygen while exercising.

Joy, my Drs have done everything to my warts, they are now growing on my legs and arms. They say that since I do not have an immune system, I can't fight off the virus. Apparently, the genetic disorder they THINK I MAY HAVE, causes issues with warts among a whole slew of other symptoms that I also have. All this waiting is hard to do. IF I DO NOT have genetic disorder, I will be going back to a dermatologist at the University of Maryland Med Center. The Dr there has a couple of options still left for me to try. One is to take a anti viral medication that's used in HIV/AIDS patients. It has a serious side effect though, it can ruin my kidneys. That's why the Dr at NIH was so strongly opposed of me taking the drug prior to my genetic test being completed.

Then AS a truly last resort I may be referred to a radiation oncologist, and he will do radiation on the areas that can be done. This is ONLY IF, nothing else works. IF I have the genetic disorder, I'll need a bone marrow transplant and if all go well the warts will disappear on their own.

Well I'm off to bed, my cardiologist called me at 2pm today and told me they will do my left sided heart catherization tomorrow morning. They plan to use the artery in my arm. So I need to be on the road at 5:45 AM.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/13/2012 9:49 PM (GMT -6)   
Good luck, Barbara.
My father has had several of those done for blockages. The worse is laying still for so long.
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! :))
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