Update-Tough Week

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 12:14:52 AM (GMT-6)

I was just getting ready to send the rescue dogs out Barbara to check on you.

I'm really sorry you had a crappy week with your daughter home.

I'm even more sorry about your Grady. My cat of 13 years just got up one morning and was not looking good,got worse as the week wore on and I always said "I could never bring myself to put him to sleep" When after a week of vomiting and diarrhea and lethargy he looked at me with begging eyes too weak to raise his head I knew I loved him enough to not make him suffer another moment more then necessary.

He had been faithful and loved us unconditionally for 13 yrs, I could give him peace at that point and know no matter how bad it hurt us he deserved no less from me.

One of the easiest decisions I ever made. You will know what your Grady needs and take care of him,they become your kids and pets are not really pets after that many years,they are part of the family.

Throughout everything take care of you and try not to push yourself too hard.

about the Soma? Seems more and more Drs want to push away from it lately. They think like another med that's addictive and we think ,"what difference does it make"

I hope the acupuncture helps some versus creating more pain too.

Vickie

Post Edited (nvrthesame98) : 3/31/2013 12:18:05 PM (GMT-6)

Hi Barbara You know I had the acupuncture with electrical stimulus one time on my back and it caused my muscles to spasm so bad that it took them two hours to get them all to relax enough so I could walk out of the place.  I honestly don't have much faith in that type of treatment. I do hope you have better luck with it next time. I am sorry that your PM thinks that you should just have to draw on your inner strength and learn to live with your pain. I personally think that is a cop out! They have the medications that do relieve pain, but heaven help if it is addictive!!!! I just bet if these doctors had to live with the pain you or any of us have that they would not be so eager to dismiss the use of pain meds even if they are addictive!  I really don't like that word anyway, most people with chronic pain are not addicted to their pain meds they are physically dependent on them and there is a big difference between the two!  I wish these doctors would learn the difference!   If hypnosis and biofeedback was the answer to relieving pain then pain meds would never have been made in the first place, but it isn't!  

Anyway I am sorry that you are having so many problems, and I can only tell you that your in my prayers, and I wish and hope everything works out for you in the end!  I am sorry for the rant about treating pain, but I just feel that more and more PMs are wrongfully taking away a  viable option for treating pain, just because some are buying into false premise that if you use pain meds your addicted to them, or will be!

I wish you all the best and Happy Easter

White Beard

barb,

your post was sad to read this Easter day, you have so, so much on your plate right now. you can always talk to me, I will listen to you. hope you can get some muchly deserved breaks and improvements in your terribly pain-filled life. I feel for you, its a rough road with no easy answer.

please never lose hope or give up, your life is important and is worth the struggles you endure with such grace.

will be remembering you daily,

david

Hi Barbara I really do hope that your doctors figure out what is going on with you really soon. Take care.

love and hugs
Loretta

Hey Barbara...

I, too, hope you are doing better today....

Thinking of you --Tina

Hi everyone,

Thank you so much for thinking of me and offering your support. Yesterday, I had another accupuncture session and again, by the time I got home I felt terrible and could barely stand up.

I went straight to bed and didn't touch the IPad or computer. This morning it took everything in me to crawl out of my bed. My oxygen saturation is getting worse, so I had to go to pulmonary rehab at 9 this morning.

As I haven't been well enough to go, I did very little today. My last visit to rehab was the end of January. With my Dr's cutting my steroids back my lupus and RA are flaring up big time. My ankles are swollen and stiff it hurts to walk.

My lower back at the L5-S1 spot is so painful, my pisiformis muscle is so tight it feels like a lemon back there. The Dr put accupuncture needles all around it.

I'm beginning to break out in sores, my hair is falling out, my malar rash is bad, and I'm unable to eat hardly anything. I'm not sure it's all from my lupus flaring, or if it's because they weaned me off of soma over 9 days. All I know is I feel terrible, I truly don't know how I'm going to make it through the night.

Have another early morning appointment with a surgeon in the AM. Will let you know how things are tomorrow. I hope and pray you are all having a better night than I am.

Hugs,
Barbara

Hi all I'm hoping you all had low pain levels today and were able to have some peace from the dreaded pain we deal with daily.

I just wanted to post that I'm really flaring, and I may not post for the next couple of days. I feel so unwell, that I'm wishing I were in the hospital. Having issues with nausea, fatigue, joint swelling, stiffness, very weak, and a constant 8 on the pain scale. I was crying as I walked thru the clinic today, I can not bend over at all I have so much pain in my lower back, butt, and left hip.

I know my with the decrease in prednisone my inflammation has risen. I can not take anti inflammatory medications as I'm on blood thinners. I spoke with my Rheumy and he's waiting for the full bone marrow biopsy results before deciding on with chemotherapy drug he wants me on.

I will have another accupuncture session next Monday and then on Thursday my left thumb will be marked for my radiation treatments. I will attempt to try to read and if possible post, but if I feel worse tomorrow I may just do my rehab at 9 and crawl back into bed after a hot shower once I get home.

Wishing you all low pain levels and as always you are all in my prayers.

Hugs,
Barbara

Barbara, I do hope you get to feeling better and the acupuncture will work for you. You sure have been through alot. Take care...Susie

Hope the accpuncture starts helping you, keeping you in my prayers, hope your doing a little better soon.
Prayers

WOW Barbara that really sounds drastic! May I ask why they want you completely off the pain meds?   I am not sure I understand why it is so imperative that you be taken off of them!  How often have they done this procedure, on patients that are as sick, and have so many things going on, as you do?  From what you have written it just about sounds, like they this is experimental or something????  I have heard of this resetting a patient pain receptors, but have not heard much about the out come of these patients, after doing this. I have heard of putting a patient in a drug induced coma to avoid with drawal symptoms. But again I have not heard much about how effective this is.  Barbara,  I would be especially leery about having this done, with all of the serious medical problems you have. 

I know there are disadvantages on being on pain medications for a very long time, but for me the quality of life is a major factor.  If your pain medication  are not effective,.....well then you might have to explore other alternatives, but without being nosey or anything, can they increase your dosage of the pain medications that do work for you?  People are so different, and some people require very high doses of pain meds to be effective! Where as with others, just a small minimal dose is more than enough!  It seems to me, that they would want to explore that avenue first before wanting to try to "reset your pain receptors".

 

I keep you in my prayers, Gods peace be with you!

 

White Beard