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Sunday, March 4, 2012

Painful Issues

These past two months, Bob has developed pain in his right (affected) arm. The pain seems to be concentrated both above and below his elbow. At first, I thought this might be a good sign since previously he has had no feeling whatsoever in that arm, and I was rather hoping this was a signal that his arm was coming back to life, so to speak. However, that has not happened.

The pain is worse in the mornings, so bad it often leaves Bob cradling that arm like a baby and crying like one too.

I talked to his pain management doctor who gave me Lidoderm patches to apply to the site, but these don't seem to be helping. So I called her and asked if we could increase the dosage of his Lyrica, a medication specifically for neuropathic pain, but she decided she wants to do steroid injections in his neck, instead, as she believes the pain is radiating from his neck. And if that didn't work, we could try upping the Lyrica.

These injections are costly. About 75 bucks a pop. And he would need three of them or more.

I tell you, sometimes these doctors just like to bleed a person dry.

I then talked with Bob's primary care doctor, who said he did not believe the pain was radiating from Bob's neck but instead was stroke/neuropathic related.... This week Bob has an appointment with his neurologist, so I will ask him for his opinion. Seems all we have been doing lately is seeing doctors...and at $40.00/each plus wheelchair transport--it is stressful.

On top of that, Bob's mouth pain has returned again. You may remember the "mystery mouth pain" episode last year about this time. We went to every single doctor, even had PET and CAT scans done and no one could figure out what was causing that pain, then it mysteriously disappeared. And now it's back. The primary doc thinks it's caused by the radiation therapy which Bob had in 2001, and he thinks it will be something that will come and go for the rest of Bob's life. Last year, Dr. Doom thought the same thing and prescribed hyperbaric treatment, which I was excited about thinking it could help Bob with so many stroke-related problems on top of the mouth pain--but the Hyperbaric doctor shot that idea down, saying she didn't believe the pain was caused by this... So we are back to swabbing Bob's mouth with Lidocaine.

Bob has not been a happy camper lately. And when he's not happy, I'm not happy.

The other night, Bob was in tears again because of the pain. I tell you, it makes me feel so helpless when I can't help him. I sat down next to his bed and started crying with him. What a sight we must've been. Bob noticed I was crying, he grabbed my hand and asked, "What's wrong?"

I told him I just felt so helpless, and that I didn't know what to do. And that it's been an awful year and I didn't know how much more I could take, and it was so hard trying to do everything by myself with no help. And I just wanted our old life back. I just wanted my husband back. And on and on.

And he squeezed my hand, hard. And he said, very slowly but very clearly, " to you. Because...I love you...very...much."

And I have to believe him. And keep his message close to my heart.


Anonymous said...

Diane, This brought tears to my eyes. I admire your hard work and determination. Our Granddaughter Trista and her fiance, Brandon have that kind of love. They have a label for it. "Forever endlessly" You have so many followers that wish they could be there to help you. God bless you and Bob. Aunt Rose

Anonymous said...

It is awful not being able to help our loved ones and see them in pain!! I hope you can find some answers to his ailments...

Rebecca said...

I remember sobbing after my stroke so this post brought me to tears. I will keep both of you in my prayers.

Anonymous said...

D, Indeed keep his beautiful message close to your came right from his heart. Patricia

Barb Polan said...

Beautiful, beautiful.

About 6 months post-stroke, my upper arm had hurt very badly for a week or so. My OT felt around and happily announced, "That's your tiny biceps trying to work again."

Bob's declaration that he is coming back to you shows just how hard he's working and how much he too misses you and your old life together. Yes, hang onto that.

Jenn said...

Time to push for hyperberic. Doesn't seem to think it will help doesn't mean it won't . How would the doc really know if he doesn't afford Bob the opporunity. We all know each one of us heals a little differently than the other.