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Posted 4/7/2013 4:00 AM (GMT 0)
Hi my CP family, I have a huge favor to ask, would you please pray for me or send positive energy if you don't pray.

I have been in terrible pain since Friday morning. Yesterday, couldn't get out of bed except to go to the restroom. Today, my pain has been at a solid 8. This pain isn't letting up AT ALL it's a constant pain 24/7.

I have several new broken ribs on my right side of my chest in the front just above my breast. I can't move my arm around, reaching is a BIG nono nono, coughing and breathing hurt like he!!. I've spent a lot of the day crying.

I just have ZERO ideas left on how to cope with the pain that I have. I really think it's time for me to give up. This is just NO WAY to live, I have to much on my plate and I just don't know where I'm going to get the energy to continue to fight my medical conditions. The PAIN is OVERWHELMING and I'm losing my mind, I can't stand much more.

Thanks for listening to my vent. I also want to say thank you for your prayers and positive energy.

Hus,
Barbara
Posted 4/7/2013 4:39 AM (GMT 0)
You have my prayers Barbara....

(Just wrote to you on the other post too).

Love, Tina
Posted 4/7/2013 5:34 AM (GMT 0)
Hi Barbara! Of course you have my continuing prayers and positive thoughts - always. Those are very odd ribs to break - what have the doctors said about why they are breaking?? I apologize if you have already answered in another post and I missed it. I know certain medications can weaken bones and cause fractures, but the ribs are not usually the bones affected, especially the upper ones.

I am so sorry that your pain is becoming so overwhelming - both the physical and the emotional. I am not in your shoes, however, I have been where you are right now in how you are feeling emotionally. I can only say that you have to find something, anything to hold onto - to give you a reason to keep hanging on. There was a time I had to do it each and every day. Every day I would wake up and wrack my brain for a reason to get out of bed, to just deal, period. Some days took me longer than others. Parents, sons, fiance, friends, one of my customers - a little old man who said that I was the only reason he came to our particular store, because I made him laugh with my jokes, my neighbor who counted on me to water her plants when she was out of town - these people and so many more people and things that helped remind me that my loss would be felt. Barbara, I know it's much easier said than done - especially when you are hurting so bad. Your doctors will find the answers - please just hang on. And please call whoever prescribes your pain medication and tell them what is going on! Even if they've told you there is nothing more they can do - call anyway.

Again, you are in my thoughts and prayers. You are also on a prayer chain, working your way around the globe as we sit here! Keep on posting and venting - you know we are always here! :-)
Posted 4/7/2013 6:26 AM (GMT 0)
We are all here with you Barbara! You have all my prayers, and I will ask for special healing for you at mass tomorrow! May Gods Peace be always with YOU!

White Beard
Posted 4/7/2013 7:19 AM (GMT 0)
I am so sorry you are going through such a difficult time. Life really throws curve balls at us and many times they actually hit us (sorry, trying to make a baseball analogy). I can't begin to imagine the pain you are living with. I truly hope that your medical experts will find a solution.
Please know that you are in my thoughts and prayers.

1 Day at a Time
Posted 4/7/2013 8:43 AM (GMT 0)
Barbara you are in my thoughts & prayers, I sure hope you can get some relief real soon. Hugs, Susie
Posted 4/7/2013 9:15 AM (GMT 0)
I'm also praying for you. I hope your pain goes down soon.
Posted 4/7/2013 2:37 PM (GMT 0)
I will continue sending you Prayers and so much positive energy as well, have you called your doctors and told them of this yet? Sure hope you can get some relief soon and that you begin to healing those ribs...
prayers
Posted 4/7/2013 6:18 PM (GMT 0)
Tina, thank you so much for your prayers and positive energy. I really am trying to get my pain under controlled. I've taken ALL the medications out there.

As for a muscle relaxer, yes I need one. The Pain management doc doesn't want we on the soma. I will see her tomorrow at 2 and I'm going to ask for one.

Splash to answer your question a bit more in detail. I've been on prednisone dose on average of 25 mgs to 30 everyday for almost 12 years now. The lowest I've EVER been on is 10 mg and that lasted for like 14 days, while the highest I've been on has been 100 mgs daily for about a month I guess. I have been on 25 mgs of prednisone everyday since June 3, 2012, I just cut back to 19 mgs on the 6th of March.

On my chest X-ray it shows that my ribs are so thin that my docs aren't suprised that the ribs are breaking. My last bone density test showed I have severe osteoporosis, they say my bones are like I'm 90 years old.

I believe I know how my ribs were broke on my right side and around onto my front. Our cat Grady has taken to standing on my chest durning the night to try to awaken me to get up and feed him.

Hubby fusses at him when he awakens, he tells the cat "GET OFF OF HER, YOU DOLT". My daughter would catch him sitting right in the middle of my chest just staring down at me. She would say the same thing. He weighs 10.5 lbs and with my bones so thin, I think he's fracturing the ribs , then I reach for something and break the rib all the way.

Hope to break him of getting up on my chest from here on out, I can't handle to much more of the pain from broken ribs.

WB, 1 Day at a time, Susie, Flower, and Chart I REALLY appreciate your thoughts and prayers. I know you all understand how hard it is to deal with pain 24/7.

I getting ready to go and lay down with my heating pad, I hope you are all getting nice weather and sunshine today. More importantly that your pain levels are lower today, and you can ENJOY today.

You are all in my prayers and I think of you all the time. I couldn't ask for better friends than you all. You get what I'm struggling with and are always willing to listen and offer support. Love you all have a good day.

Hugs,
Barbara
Posted 4/8/2013 1:01 AM (GMT 0)
You are in my thoughts and prayers.
Posted 4/8/2013 7:23 AM (GMT 0)
You got it Barbara and sorry your having a difficult time.

Vickie
Posted 4/8/2013 11:46 AM (GMT 0)
Hi Bluejeans and Vicki I want to say thank you for your prayers. I'm really having a hard time trying to talk myself into holding on anymore.

I just can't stand hurting 24/7, as I'm sure you all know it's darn wearing on us physically and mentally. If I could just have one day pain free.

Anyway, thanks for the prayers, I hope you both have a low pain levels week. I think spring has finally arrived on the eat coast. Hope it has where you're at too.

Hugs,
Barbara
Posted 4/8/2013 2:43 PM (GMT 0)
Hope the accupuncture today helps give you some relief, many more prayers.
Posted 4/8/2013 2:58 PM (GMT 0)
Sorry to hear that things have been so rough for you lately Barbara:(

I'm really surprised that your PM Dr. isn't just switching you to another muscle relaxer if they have an issue with the Soma. There are many others to choose from that work quite well.

I was thinking that your PM was on your side about wanting to really help out with your pain issues....Are they the one behind this whole Ketamine coma thing? I just can't believe that any Dr. would ever think to do this with all the conditions that you have....

The only thing I see online on medical websites is the Ketamine treatment...but it's not putting someone into the ICU into an actual coma.......Is your PM saying that it is this or nothing?

Sorry to ask so many questions...I have just never heard of any Dr. doing something like this. If they truly just wanted you off the medications to see what your actual pain levels are...they can easily just wean you down slowly on your medications...That way there is zero risk...I would demand that they do this option over the other personally.

For me, I got a decent amount of help with acupuncture...but like with everything...it's just one piece of the puzzle. Thankfully my PM does this for free anytime I want as I don't have insurance....It really needs to be done a few times a week for at least a few weeks to a month to get good benefits...

I could not do the electrical stimulation kind...so we do just the basic acupuncture but they have the room all set up with the candles, music, in a relaxing atmosphere.....you would never know there is a busy office just outside the door!! LOL

So...I hope that you can get some help with this and I will keep the prayers coming for you!
Posted 4/8/2013 4:03 PM (GMT 0)
Oh Barbara, my heart goes out to you. You never seem to get a break, it's just one thing after another. I really hope someone can give you some answers and some hope soon. Please please don't give up hope. You mean so much to do many of us. Hang on in there but make sure your doctors know how you feel and just how much you are hurting. Of course you will be in my thoughts and prayers.

Big gentle hugs

Jane
Posted 4/8/2013 5:12 PM (GMT 0)
Hi Barbara

I'm so sorry you are suffering so much, always suffering. I know what it's like to never have a break from this heavy pain and how it really wears on you. It zaps you from all your energy, every ounce of it. Make sure you let your doctors know that you are having S. thoughts so that you can get the proper care necessary.

I continue to pray for you. I wish I had the answers that would bring you some relief but it seems you have tried so many things with no response. My heart goes out to you. Keep posting here and we'll help you get thru this.

Suzane

Posted 4/9/2013 1:58 PM (GMT 0)
Hi Babara,

Sorry to hear about all that's been happening.
Sending you my prayers and positive thoughts.

Hope things gets better soon. Hang in there.

UA
Posted 4/9/2013 6:40 PM (GMT 0)
Hi Barbara -

Just another note to tell you I think of you every day. I read everything I can find in hopes someday I'll run across something that can help you. I know how hopeless you must feel, I just pray each day that you'll find some joy in the day. Enough to keep on.

Hugs
Posted 4/10/2013 1:52 AM (GMT 0)
Hi Barbara Of course. You have my positive thoughts and prayers always. Please keep coming back and posting. We all care for you so much. Take care.

love and hugs
Loretta
Posted 4/10/2013 10:36 PM (GMT 0)
Thanks everyone for your prayers, well wishes, and positive energy. I know I certainly need the support of my HW family. I really am feeling so sick. I know a lot of it is connected to cutting back on my steroids.

SB I would like to try to answer some of your questions. First off my pain meds ARE NOT prescribed by a PM Dr. My PCM prescribes my medications, she has been getting guidance from the PM Dr at the military hospital.

When I was accepted to NIH program, I was referred to pain management there. However, they are not taking over my PM care. As all my Dr's, except for my research Dr are all at Walter Reed.

The pain clinic at NIH is providing the accupuncture, my medical hypnosis, and biofeedback. The PM Dr there is only a consult. So basically, she makes her recommendations to my research Dr and she forwards that on to my PCM.

My PCM put me into the hospital in 2010, she was the Dr on staff durning that stay and she had wanted to try to reset my pain receptors with ketamine. The PM Dr there at Walter Reed didnt want to try a ketamine drip, and since the oxy wasnt working they recommend that she start me on methadone with dilaudid for BT.

This last hospital stay at Walter Reed, the PM Dr came to see about my meds for BT pain. They felt I had plenty of room to go up on my LA and BT pain meds. He did offer to me though that IF I wanted to try to totally reset my pain receptors and see if I could handle it, the best way would be to do the drug induced coma and placed on a vent in the ICU for a week.

They weren't giving me any guarantees that once I woke up and started doing things that I wouldn't require pain meds again. They also told me that with all my complex health issues they weren't sure how well I would wean off the vent. It was just an option that they were offering to me.

I've not discussed this with my PCM yet. I was just asking the what IF question. I've taken all the meds out there and my methadone has been the best results for me. That being said, I'm not at a dose that holds. I'm still having to take a fair amount of BT meds. Because of my issues with my extended QT interval, all the Drs in my care are worried about increasing the methadone.

So I was just tossing around options. As for muscle relaxers go, both my PCM and the PM at NIH, really are against me taking muscle relaxers. Again, it's my requirement of 4 liters of oxygen, that worries them. They are worried about suppressing my respiration.

So for now, I hurt way beyond were I'm able to cope. I'll see the PM Dr next week after accupuncture, I intend to discuss my muscle issues with her. I'm hoping to see my PCM tomorrow if I can get fit in somehow. The area where my ribs are broken on my right chest is VERY swollen and I can barely take a deep breath, let alone sneeze or cough.

Hope this helps clear things up. I may have you give me your PM Drs name, I may see if he's taking new patients. If you don't mind giving his name, I may ask for it. I'm really kinda between a rock and a hard spot. Just not sure what to do or where to turn.

Again, thank you all for your support. It's hard to cope when you feel like you have no one on your side.

Hugs,
Barbara
Posted 4/10/2013 10:57 PM (GMT 0)
Thanks for sharing more..I'm glad to hear that this is not something that they are trying to force you to do or giving an ultimatum. I just see it as way too drastic and dangerous.

As I wrote in my post, the easiest way to see where your pain levels are or do a "reset" if they/you want is to just slowly wean you down in meds. I didn't see you mention that as an option from them so that is why others and myself reacted so strongly to them even suggesting something like the Ketamine coma and then taking you abruptly off your Soma.

For clarification, the PCM is your Primary Care Manager...is this right?

I would be happy to give you my PM's name and I am pretty sure they always leave room open for new patients. So, just let me know.

You have certainly been through so much lately and hope that you can sit down with your PCM tomorrow and talk things through and see what she thinks about everything.

Hugs back at ya (( ))
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