Update

Well here I lay in bed on my iPad. My back is killing me, my shoulders are rock hard and my lower left SI joint, left butt muscles, and left hip hurt like CRAZY.

I had hubby put my lidoderm patches on, one on each shoulder and one on the low back. I think my pain and spasms are so bad, because I had to be fitted for my radiation treatments.

Found out thatim going to have to lay on my stomach with my hand laying flat in a bucket, with some type of gel pads and then water covering my hand. I laid that way for about 45 minutes.

They said the radiation is going to reach just above my wrist by about 2". They said I may develope some blisters on my thumb, but hopefully that and the fatigue should be all of my side effects, we hope.

Now, I seem to have a constant black cloud as a partner, and if something is going to go wrong, or if something is gonna happen to someone, it's usually me. Not looking forward to any extra fatigue as I'm already at a 10 on the fatigue scale.

Still feeling very unwell, having serious issues with eating. I'm losing on average anywhere from 1 1/2 to 2 pounds a day. Today, all I had to eat was an English muffin with blueberry jam and some apple juice.

Rheumy is still waiting on my bone marrow test results before proceeding forward with treatment for my lupus and RA. I'm getting sores that look like chicken pox popping up, swelling in my joints, so stiff to walk, chest pain, difficulty breathing, and more hair falling out.

I have to say I have NO QOL in my humble opinion and the thought of staying like this for 20 more years is very unappealing. I've battled lupus a really long time, but I am sliding downhill fast, have been for about 2 years now.

I get my first radiation treatment on the 25th of April at noon. Have accupuncture next Monday too. Not sure if it's helping me though I'm still just as tight and sore where he's working at. Well, that's the update here, gonna try to sleep now. Hope you are all resting well.

Hugs,
Barbara

So sorry Barbara,you've certainly had more than your fair share to deal with lately.

Right now Im concerned about those chicken pox like sores since you were recently hospitalized.

Don't want to add fat to the fire but please let one of your Drs check that out. There are some staphylococcus and MRSA that display as small pimple like sores and resemble chicken pox even drain serous or pus like fluid. Some simply look like a pimple that's come to a head.

Hospitals still rank the highest incidents of MRSA.

Sure hope things start looking up for you soon.

Wow..it's been almost a month (March 15th) when you had the bone marrow biopsy done....I don't understand what could be taking them so long:(

Did you get to end up speaking/meeting with your PCM to discuss the pain issues and what you all are going to do from here?

Again, I can see how some Drs. are wanting to get away from prescribing Soma, but there are plenty of other muscle relaxers to from which to choose that are ok/safe with those with any breathing or heart issues.

Sorry for not knowing your whole history...but did you end up on Methadone because you had tried all the other meds like Oxycontin, Nucynta, Morphine, Opana, Butrans patch, and Fentanyl and they all didn't work for your pain?

I agree with Vickie in that you really should get those sores looked at....it could be shingles or other more serious things like MRSA. So, taking a quick trip to the ER is something we are recommending you do as either of those things would need treatment asap.

And hopefully your PCM can offer some medications to help boost your appetite. In the meantime, you really need to have some things like Ensure or Boost around so that when you feel like eating something you will get the nutrients you need.

When is the last time that you were able to speak with your counselor about your depression? With the last months being so hard on you emotionally and physically.....I really pray that you are taking time to focus on that aspect of your health as without having a strong foundation, everything you are facing will be much harder.

We all support and care for you here! Hopefully you can find time this weekend to visit with family and/or friends and get some laughter and joy into the mix to help boost up those endorphins! Even just getting outside if there is nice weather to go on a leisurely walk or sitting at the park.

Praying for you!!

Wow Barbara I hate that you're suffering so bad. I wish your doctors could find a way to help you feel better. Knowm that you're in my thoughts and prayers as well. I hope the radiation goes well for you, and it doesn't make you feel too worse off. Take care, and try to rest all you can.

love and soft hugs
Loretta

Hi everyone, I just read thru all your posts and I just wanted to say thank you so much for your love and support. It's 2:30 am and I'm still unable to sleep, I just plain and simple hurt to bad.

I'll do a more in depth responses to each of you later on today. I just wanted you all know how much I appreciate your help during this tough time for me.

I will post again tomorrow and answer some ?'s. I did have a very nice surprise today. A dear friend of mine who I haven't seen since last Sept called me Thursday and asked if she could drop by on Friday. I said of course. Come to find out she lost her job 2 or 3 weeks ago, and she's been wanting o come and see me..

Even though I felt poorly all day yesterday, I really enjoyed our visit. I never was able to eat anything yesterday. Just water and juice for me, my Dr did call me Friday morning early. Will update you later today.

My friend who came by will return at 2pm today with her hubby and two kids. We never prepared our ham for Easter, so hubby will bake the ham and prepare a nice meal for us all. I most likely won't post till later on Saturday night. Again, thanks or your support, prayers, and love.

Hugs,
Barbara

Barb, glad your friend is coming to see you, that will be a good mind and pain distractor hopefully. Don't feel pressure to respond, we understand, you are doing the best you can for sure.

david

Good Morning all, I can't seem to get comfy enough to sleep my right shoulder is so tight and I just can't ease the pain.

Lynn, Vickie, Suzane, Loretta, Jane, Lynnwood, and Chart knowing that you are all pulling for me and sending lots of prayers and well wishes, brings a lot of comfort to me. I'm at a period of time right now that I feel like I'm taking more than I'm giving around here. I just want you all to know though that you are all in my thoughts and prayers. I hope you had a good day yesterday. Hopefully, your Sunday will be nice weather and your pain levels will be low.

SB, thanks for your support to, you know a lot about PM and I'm learning a lot from your posts. Yes, it's been almost 30 days on my bone marrow, not sure why either.

My PCM, is my primary care doctor, like I said she's guided by a PM. When I go in for my accupuncture on Monday, I'm going to see either the MD or NP in the pain clinic. We have to come to some sort of solution. Since coming off the Soma my muscles are so tight and painful. My Fibro is really acting up, hence, why I'm up in pain at 2:30 in the morning among my other pain stuff.

Yes, I've tried all the other pain medications out there, and that's how I ended up on the methadone. I spoke with my PCM Saturday morning, she was checking on me. She said last Monday when they did my xrays on my ribs, it showed that my bowel wasn't totally obstructed but it was working that way. She figures that with all the extra dilaudid it slowed things down. She feels that partly why I'm not eating. I sure hope I'm not headed for emergency surgery.

Anyhoo, I'm on mirlax twice a day now and will see how I am on Monday. I mentioned my sores to her and she had me take a photo and email it to her at her home. She said it looked like a typical lupus sore that I get when flaring. So no MRSA and she said she felt that my lupus is in a big flare, but they would somehow get me feeling better.

Yes, our friends came to lunch today and I really enjoyed it. They are like family to us. They are from Russia, they came here on student work visa's. They have two children who have been born here. Konstatin two years ago became a US citizen, now Ludmila is in the process. It did tire me out though, they didn't leave until 7pm. It was good to see them though even though I couldn't have vodka shots.

I wish I had family near by, but no. Both of my parents are deceased, I really wish they were alive. I'm so sick and their wisdom and just being able to hear their thoughts would really help me. I have to very much older siblings, but we only talk or email twice maybe three times a year They openly admit that they are uncomfortable talking to me because I'm so Ill they say they just don't know what to say to me. Gosh, I love you and what's happening, would be a good place to start.

David, I want to thank from the bottom of my heart for your post!! I have been reading your posts on the PC forum from the very first day you started. Everything that you have gone through is amazing, and you are a real inspiration to me. You have been through so much and yet you always are willing to help someone else. You are an awesome gentleman. I haven't finished all the way yet, I'm up page 440 in the forum.

I know you get my references to my crummy QOL issues. I'm nervous about the radiation but I've endured so many other things, I can only believe that I'll do fine with the radiation. I know you offered, but I want to make sure if it's alright, I would like to email you.

Okay, I'm gonna try to lay down and sleep. I deeply appreciate ALL of you for supporting me. Quite honestly if it weren't for my HW family I'd have no one that would get it and understand. I have my hubby and daughter and they love me and care for me, but they don't get it and the are somewhat reserved and distant. I'm NEVER told that I'm loved unless I say it first and then they say I love you too. They just aren't big on the warm fuzzy stuff. So everyone here supplies the warm fuzzy stuff when I need it and I THANK YOU for it.

Hugs,
Barbara

Thanks for taking time to update and stay on top of the obstruction issues. Having been on methadone for years I like too have been close to complete obstruction a few times. Seems we have so much going on that's something I lose track of.

After a few close calls I'm staying better aware of how often I go or don't.

I use to use the Miralax but at some point it too stopped working.

Hopefully your resting now. Will continue to send healing thoughts and prayers your way.

Vickie