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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/31/2013 12:39 AM (GMT -6)   
Well I have had a really tough week. Monday, I went to NIH, apparently my initial bone marrow biopsy results, showed I had an infection in my bone marrow. So Dr A. wanted blood cultures taken from my medi port. To rule out any infection in my port.

So I did that at 12:30, met with Dr A and she said that it looks like my bone marrow is working REALLY REALLY WORKING HARD confused to make red blood cells and my red blood cells are tear shaped. She really has NO idea as to why this is happening. She's also still waiting on a lot more results yet.

After seeing her, I went to my appointment in the pain and palletive care dept. I met with the PM Dr and she recommended that I need to come off my muscle relaxer Soma. She said that really a muscle relaxer does not relax the muscle, but it's the brain that it must relax so that the muscle can relax. She also stated that Soma is highly addictive and she felt it wasn't doing much for me.

She wants me to learn medical hypnosis and do a refresher courses on biofeedback. She told me that with all that I have going on I WILL NEVER BE PAIN FREE sad sad devil devil. She said that I'm going to need to learn to draw on my inner strength that I have and focus on other modalities that will help get me through VERY tough times. I'm trying to look at this with an open mind shakehead not sure how well this will work, but I will try.

Then I met with their Chinese Dr that does accupuncture. Well he did a treatment on me, with electric stimulation attached to the back needles. The session lasted 30 minutes, and when I left the facility I felt fine. Around 7 pm I started to hurt in my lower back and on my butt cheek where he placed the needles. By 8 I was in so much pain, I had to go to bed and lay on the heating pad. I spent all of Tuesday and Wednesday flat out on my back in bed. I called the clinic and they had NEVER confused heard of a reaction like mine. They suggested that he may have hit a trigger point, which released the muscle, which then caused inflammation, which in turn caused me pain. Not sure I buy that, but I'll try another session this coming Monday and see how I do.

I'm very fatigued and my hemoglobin is just barely above my cut off level that my hem/onc has set for me. I'm short of breath, am so tired, have chest pain and just feel awful skull skull. I just wish my count would drop low enough and I can get my blood, I REALLY need a couple of units.

Lastly, I met with a Radiation Oncologist at the military hospital on Friday. My dermatologist who is renowned has decided that I can not have any more IV infusions, to treat my warts, and is recommending I get radiation therapy on my warts. Well the Dr I saw on Friday has agreed to perform the treatments. He did say though that he will start with my left thumb first just in case I have troubles and in the WORST CASE possibility that I end up with an open wound that doesn't heal, and they have to amputate that thumb, it won't happen to both fingers at the same time. Once we know if it's gonna work he says we can do the radiation on ANY :-) of the warts I have. Hopefully, my body WILL NOT nono nono nono grow them back.

So that's been my tough week, daughters been home from college for Spring break. We take her back to college tomorrow, which always makes me sad. I'm very worried about our cat Grady. He's been with us since he was 5 weeks old, we got him from the pound in CA. My daughter, she was 3, and picked him out of the bottom cage. He fit in the palm of my hand, he weighed less than a pound. Well, Grady is now 17 and isn't eating to much, he's drinking, but I'm lucky if he's getting 1/4 cup of dry food in and maybe a tablespoon of wet food. Talked to the vet and she's recommended either boil skinless chicken for him or give him chicken baby food. She gave him something for nausea. I think our buddy is getting ready to leave us, he's down to 10lbs. He's a big cat and at his all time high he weighed 18lbs. Please pray and send positive energy that he doesn't suffer, I'll try NOT to let that happen, and that I can handle the loss of my baby. Since my Dad's passing in May 2011, Grady has become my comforter, I know I'm gonna lose it, when he passes.

Happy Easter and I love all of you here at HW.

Hugs,
Barbara

Post Edited (Barbara Lee) : 3/31/2013 12:10:08 AM (GMT-6)


Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 3/31/2013 1:07 AM (GMT -6)   
Barbra I hate to hear that your going thru such a rough time!!! I don't know how but I hope you get your pain managed!!!
Keep in mind you'll get to see your little girl soon!
I know how it is to lose a pet. It's rough! I hope you can manage that pain as well. I'm missing my walks with my boxer. He's all alone in his pen until I get better. I did pay him a visit on my crutches today and gave him a bone.
I hope you have a great Easter "The Jesus Holiday!!!"
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/31/2013 5:21 PM (GMT -6)   
You have had a rough week. My 13 yr old kitty is going through the barely eating stage herself. Your hands feel tied when it's like that.

I remember you mentioning awhile back you had MDS too? That could be why your marrow is messing up.
I hope things work out for your warts.
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! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 3/31/2013 9:57 PM (GMT -6)   
 
 
Hi Barbara,
 
     You are having an incredibly challenging week.  I have used accupuncture for the pain I have from sciatica.  It does help, but sometimes the needles can be uncomfortable.  Trigger point is a perfect description.  I do incorporate some other methods into my pain management, like meditation and deep relaxation.  They work to a point.  Sometimes I can't even relax enough to find the zone where I can even let my mind go.  Soothing warm baths work....with gentle music and some candles.  I draw much of my strength from the natural world.  Just gazing out my window into the woods behind the house is an amazing release for me.  I am sending you all of my support and a gentle hug.
 
Laura

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/1/2013 9:39 AM (GMT -6)   
Hi Barbara,

I'm sorry you had such a challenging week. I hope you were able to spend some quality time with your daughter before she had to return to school.

I'm glad to see that you felt up to posting and even to answer some other posts! It's truly inspiring what you go thru and manage to keep on ticking. (Remember those old watch ads? I think it was Timex watches.)

I'm thinking of you today as you try more acupuncture. I'm not certain how I feel about that modality, but I would be in favor of anything that can make you more comfortable.

I hope they will relent and give you some blood this week. Or I'll have to find some good "how-to" vampire books and send them along!

Gentle hugs and multiple supporting thoughts...
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 4/1/2013 11:21 AM (GMT -6)   
Barbara, I'm so very sorry that you're having such a tough week. I did accupuncture for a few months without any electrical stimulation and it helped for a while, but then it seemed I reached my limit for pain/relaxation and stopped going. One thing I really liked about it was if I told my doc (who was certified by Emory) I had nausea or a headache she would work magic and I walked out cured from those issues. For years I've thought about trying biofeedback, meditation, or yoga, but just haven't gotten off my butt to do it.
 
As you know I couldn't take Benlysta (and the Lord knows I tried), but I became very sad over it not working for me. I thought Benlysta was going to be my wonder drug. I got extra drugs for the depression and they worked (more cheerful now) so now I'm tapering. I  know how badly you wanted the IV drug to work for your thumbs. They are in such terrible shape. I'll be praying for your radiation treatment.
 
Well Dearest Barbara, as for Grady, 17 years is old for a cat. I don't know if you can handle it mentally, but it may be time to euthanize him. Animals are hard wired to never show that they are ill so they don't look like easy prey. By the time they are looking sick (lethargy, loss of appetite, lots of shedding, peeing outside the box or many other symptoms) it's time for a vet visit. I have a blind 15 y/o dog who is still doing well, 2 cats, and 1 guinea pig. (I killed Bacon Bits' fellow inmate when I fell on him.) Anyway, if you choose to take him to the vet for the purpose of euthanization. Spend a day holding him and crying- I've found it helps me. I or my BF digs a hole prior to the visit. We take the pet to the vet in a warm towel or blanket. I've read that if you have other pets, it's essential to let them view their deceased friend before buriel. I've also asked the vet to dispose of the body. Lastly, there's absolutely nothing wrong with letting him pass away naturally. Perhaps your husband will want to adopt a grown cat. Mine were both grown when I got them.
 
As always, you deal with far more *$%# than the rest of us. Sometimes I'm a distant second. I hope it didn't tire you reading all  this. Like Lynnwood said, you still make the time to post which is often more than I do. I love you Sweetie and hope you have a better week.  Donna

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/4/2013 4:31 PM (GMT -6)   
Well, I managed through rehab this morning barely. Luckily for me the regular RRT is out this week on vacation, Camilla can be pretty tough on me at times. Whereas Mary is a bit more understanding of the pain that I deal with daily. Since it's been over 2 months since I was there last I did only 5 minutes on the bike and only 15 on the treadmill. No lifting of any weights and stretching was kept to my low back and legs.

My ribs are no longer popping when I walk, so I think they are beginning to mend finally. I've been sitting here in the chair and just noticed that my right side of my upper chest is hurting really bad. It feels like I have a huge knot on my chest and it is hurting to move on that side. I sure hope I've not broken ribs on that side too.

I'm still waiting on a game plan for treatment of my lupus flare I know I'm pretty miserable and my joints are really swollen today and very very red. Needless to say I'm no better than I was last night.

I do have a question for those of you who have been on pain meds a long time. My PCP and I discussed possibly trying to take me off all my pain meds and trying to reset my pain receptors. The pain management docs at the military hospital said that they could do that by, putting me into a drug induced coma, placing me on a ventilator placing me in the ICU and giving me ketamine drip for 7 days. The ketamine would get me through any withdrawals symptoms and may make it that I wouldn't need opioid meds anymore.

There are a few concerns though, with my pulmonary hypertension, pleurisy, and pericarditis they are worried they may have a difficult time weaning off the vent. Not to mention all my other major medical issues that I have. I'm not sure which way to go with this, just remain on my opioid meds, which we can't seem to get me at a comfortable level pain wise, or take the risk and try to come off all opioid meds. Has anyone ever did anything like this before.

Well I'm gonna put one more post in and then I'm off to bed. I hope you all have low pain levels tonight and can enjoy your evening. Nothing is planned for tomorrow so I'll be able to sleep in and maybe I'll wake up feeling a bit better in the AM.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/4/2013 11:03 PM (GMT -6)   
I hope you haven't broke another rib too. You sound so brittle from all of the treatments you've had over the years.
I pray I'm half as strong as you are now when I get to the point you are now.
Take it easy and mind those ribs.
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! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/5/2013 6:10 PM (GMT -6)   
Hi Barbara,
 
     The treatment they are proposing for weaning you off pain medications sounds intense.  I would certainly get a second opinion before I underwent anything to that degree.  I would want to be sure that all of my medical needs are adequately addressed.  My thoughts are with you this evening.
 
Love, Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/6/2013 9:29 PM (GMT -6)   
Thanks Joy, I'm not real sure about being strong. I have to say I barely am holding onto the rope my hands are clutching at. I've been in so much pain today. I can't begin to express how badly my right front side of my chest feels.

I saw on the Fibro forum that you received your denial letter, I know it's a HUGE disappointment, I'm sorry Joy. Now let your attorney handle it from here on out. Wishing you a speedy appeal with an acceptance letter this time around. (((((hugs)))))).

Laura thanks for your prayers, yes they are talking about doing something VERY nono nono radical to try to reset my pain receptors. I'm not certain I'm going to go that route. However, my pain is so bad right now that I often cry as I move around.

Hope you are feeling better, how much prednisone are you on now? Have you and your Rheumy made a decision of what your going to do to treat your lupus? I really hope you are feeling better, please keep us updated.

Hope you both had a great day and a good night tonight. I'll be praying that we all have a good day tomorrow.

Hugs,
Barbara

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/7/2013 1:28 PM (GMT -6)   
 
 
Hi Barbara,
 
     I wish I could give you a hug right now!  I am currently on 10mg of Prednisone every other day.  It holds me....mostly.  Days that I do too much or stress from work builds up on the days that I do not take the Prednisone sometimes cause what I call a mini-flare to happen.  I get hit with arthralgia, malaise and fatigue.  A nap usually helps, so it's been okay for now.  I am still on the Plaquenil and take pain meds when the pain is too much to bear.  I am certainly not experiencing pain like you are, but when I hurt I do get grumpy.  So to make a long story short, we will go with that for now.  I am really out of options, since I have tried everything else and had problems with all of the "bigger guns."  My mantra is to just take it a day at a time and go from there.  I finally got scheduled for the arthroscopy.  It will happen when my school year is over...June 28th....so lots of time to wrap my head around it.  I see the Rheumy in May, so we will have a chat about the surgery and have her speak with the ortho, so they can figure out what to do with my meds, etc.
 
I am sending you as much love as I can and I do hope that you are having a better day today.
 
Love, Laura
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