My pain is driving me crazy

Barbara,

My heart goes out to you in many ways, and FOR many reasons. "Back in the days of dirt and dinosaurs"....I was prescribed prednisone often. Among a long and growing list of allergies from everything from many ABX and that I cannot take NSAIDS,...you can be sure they'd do anything to not provide narcotic pain relief, (or send me home not reading my chart telling me to take ibuprofen). Really? Does anyone ever read our charts?

My reactions to the PUVA radiation and methotrexate chemotherapy made me so ill, ruined my skin head to toe, and caused incredible pain and of course embarrassment. (More prednisone). Given my prior work history believe me I fought tooth and nail against anything from medications, surgery, injections...wanted to exhaust all other sources. But there comes that time.....

One of my neuros put me on prednisone before my back and hip surgery to at least give me a little comfort (all my surgeries happened to occur around major holidays and family gatherings). I WROTE it down on my med list that I HANDED to the doctors/surgeons (who didn't read it), and only told me later that that is what may have made my recovery a little tougher. (?Heck I don't know). Why not a week worth of Vicodin instead of prednisone? With my history? Why indeed.

I wonder how much damage all these drugs we all take do to our bodies, short and long term, and what if any is irreversible. I do my research but find life has been a better teacher.

If I may, quick as I can, relay something. My Mother in Law has neurofibromatosis and lymphedema very badly. From a full time teacher in a prominent Catholic School she was let go3 years ago, and went from a cane, to walker, to now being wheelchair and bed bound within the past 1.5 years. No one will touch her, her doctor won't come in the room with her, (he talked to her from the doorway), she weighs over 350 pounds and needs, will always need, some for of personal health care if she wants to go to the bathroom and clean herself. I stayed with her for six weeks. She has "bone on bone" in both knees and wrists. She needs her wrists, it's the only way she can move and "transfer" because she cannot stand even to transfer. I cleaned her, kept her company, fed her, took care of her,...and got pissed off because she was embarrassed to tell her doctors the truth. I caught her lying. So I started going to her doctor appointments with her, standing in the door so the doctor couldn't leave until OUR questions were answered, I wrote everything down, took and make the calls, went in the wheelchair van each time to and from all visits, even to Boston.....she avoided subjects but I couldn't do it. I retained her dignity and chose my words carefully, and the doctors realized I knew what I was referring to and was observant. While I was there she got better care than before. Since I moved out to have my own surgeries she's back slid so far she's scaring her kids, her family, herself. I'm still the only one she confides "the real truth" in. Fuss aside, she knows I know what I'm talking about, she knows my protectiveness of her meant I ENJOYED being her advocate, and she gave me permission to discuss the things she felt too humiliated or scared to address. Now? They've got her back on 50mg of prednisone for the 4th time this year. I think it's to shut her up and because they're unwilling to help her find specialty clinics. I found THREE!!!  How hard can it be for THEM?

Half the time they want to shut us up and get us out before we make a scene. I'm very protective of her and never let her leave or the doctor sneak out until all of MY questions were answered, and ALL of her issues were addressed, including the ones she was trying to hide from her doctors, and until WE had a plan of action, and I took excellent notes.  They weren't going to write her off as long as I was there.  Bringing a family member can do wonders.

I'm too familiar with prednisone between my years on it, and my Mother in Law's extensive experience being put on it (with not a single doctor explain to her what effect this had on her),....I wish I weren't so familiar.

Are you on O2 with your sat so low? Just curious.

Good luck to you.

Sookie

Post Edited (Sookie Snows) : 8/1/2013 7:12:01 AM (GMT-6)

Hi Barbara! Was going to send out the search dogs for you if you hadn't showed up by this morning.

Every time I see you post an update I say a prayer before I look hoping things have gotten better or at least not gotten worse! Hate to see your Doc on vacation as you already know some of us have worries over how good your care is anyway with the military facilities.

I always loved being left in limbo when my Dr vacations but a few times it's actually been to my benefit since the on-call Dr figured out something my regular Dr had been stumped over. You know fresh look thru new eyes?

You change in any way you know to take your behind into the hospital right? Therapy? Well goes par for the course for us doesn't it? Can't win for losing.

On to your daughter and although we for the most part understand why she's doing what she does it's hard to accept her treating you with such meanness. Not talking to you or checking up on you.

I have one like her Barbara so I understand that level of pain. She lives in the same town and I've seen her twice since Xmas and only for mere minutes. Talk to her couple times a month. Although she isn't my only child she's still my child and I expect more from her. We've always had a very strained relationship thanks to her Dad and his parents who've always drove it into her that I was just a glorified drug addict and because we had joint custody and she spent equal amounts of time between us that I loved her less then my other kids since I had them all the time and her some of the times? He sued me for joint not the other way around. He only did so he didn't have to pay child support! Anyway she's been brainwashed all her life and she even harbors resentment towards the other kids. Still I am her Mother!! For my birthday she sent me a message on F/B. That's it no call or even a text.

I fear when I'm gone her regrets will be many. My oldest daughter said she told her she just couldn't deal with me and my issues? Me believes her issues are far bigger.

Your daughter on the other hands living on you and in your house, going to school on your dime and in reality existing and enjoying her new found freedom of adulthood because you and hubby are picking up the tab so she can if I'm not mistaken. She at the least owes you some educational updates and such. If she doesn't want to hear how your doing she doesn't have to ask a text saying "hope your feeling OK Mom " doesn't open a door for discussion but let's you know she's thinking about you.

Maybe its time Barbara that your daughter finds adulthood and freedom to be rude and selfish comes with paying your own way. Tough love and tough lessons. Its not okay to maliciously hurt those who love care and support you.

Hoping your resting and healing.

Hello Barb,

Been waiting for an update from you, glad to hear from you, but it seems like a mixed bag in its content. Doesn't look like any thing goes easy for you, ever. And I know how tough that is.

I am not being judgmental to your daughter, but her attitude toward you is not acceptable. Not sure how I would react if any of my adult kids ever treated me even 10% of the way that you describe her relationship with you. On rare moments, one of mine will make a snappy/rude off the cuff remark to me, but within minutes at the most, they realize it, and feel bad, and are quickly seeking my forgiveness.

Hope you get some relief on your feet. In my current progression of pain through my body, it's sometimes my right foot that hurts the most, and some days, its both feet. Over the weekend, my wife suggested that I might need a walker. I went ballistic (not at her), the idea. It's bad enough I hobble around with a cane, I am not ready for the "walker" mode yet. And while walking is considered to be the exercise that anyone can do, I kind of laugh at that thought sometimes, because walking makes my pain much worse under any circumstances.

I hope you have some better days ahead, I worry about you, so glad you checked in. Always here for you.

David