Cindy’s Multiple Myeloma Blog

I’m feeling both of these to an abnormally high level.  I know it’s part of the process to some extent, but I’ve got to get a grip on it.  I’ll be telling the doctor these symptoms and more on Thursday. I don’t really want drugs to take care of it.  Sheesh, one drug to perk me up and another one to take the edge off — the result might be frightening. 

My left shoulder pain is OK as long as I don’t lift my arm shoulder level.  So yes, the plasmacytoma’s are there, but for now I’m maintaining.  I’ll tell Dr. D. about this Thursday.  Looks like I’m going to have to start back on some kind of treatment.  But what happens when I can’t afford it?  No Medicare D plan is good for chronic illness.  Can people really afford over $4000 annually on prescription drugs?  I fall into the category of too rich for help but too poor to afford.

Not going to the bathroom very much (#1); going on 3 weeks where I have to go…but nothing.  I have to sit there a while, even when I have to go.  It takes patience then work to do it.  I think this has something to do with how I’m feeling both physically and emotionally.  You’re just not “right” when you’re not right…know what I mean?  I wonder what’s going on? I am not drinking lots of liquids. It’s so hard to do.  No pain or burning, though.

I’m not juicing or any of the extra healthy stuff.  Too tired- but I have to get a handle on this. 

One of those assisted living places or at the least a small duplex with yard work done for you sounds sort of inviting, but then what would I do with my 4 dogs, 4 cats, and 4 horses?  My dogs are old, though, so maybe I can wait them out a bit.  Also—some other options may improve my living arrangements, just make it easier to maintain - so this one is complicated but doable.  Just have paperwork and research to do regarding my living arrangements.  It’s probably best for my mental state to stay right here with my critters; they are my passion.  

It seems like such negativity is around me and I need to change this somehow.  Some things are beyond my control basically, but perhaps I can use meditation and determination and manage them.  I will know more of what I can do or at least try to do after I meet with Dr. D this Thursday.  Think I will set up an appointment with the Social  Worker, too, to discuss assistance with medications and which Medicare D plan to choose. 

 Ya know, one thing that has been frustrating with the Medicare D plan is that I’ve had several people tell me to get someone to help me, like a Pharmacist, Social Worker, etc.  I’ve tried to talk to 3 Pharmacies and they just don’t do it.  They point you the Medicare.gov web site and you must do your own research.  But patients like me needs someone to look over the medications I take, anticipate perhaps other medications that I may have to take considering my condition, and help me make a judgment call.  Isn’t that what they’re supposed to do?  Also, I don’t understand all the versions of the medications in the drop-down list.  The Social Worker was very busy but very nice last time I was in the office.  She told me to try it on my own but she’d be happy to help if I still needed it. 

So I’ve printed out some searches I’ve done.  Once I talk to Dr. D and see what treatments and new pain meds she may prescribe for me, I’ll talk with the Social Worker.  It’s just disappointing that the people who are supposed to be there to counsel you are so overworked themselves that they just don’t want to take the time. 

I think I’ve appeared negative to those around me for some time lately, but these challenges just take the wind out of your sails.  However, I’m a true survivor.  I get down, I get negative and all that bad stuff, but then I get back on my feet, get it taken care of, and start smiling again.  I know we have a  choice how we handle these things, and I like to make the right choices.  I’m tired of being negative. 

Filed under: Multiple Myeloma and