New Normal

[Joppette]

I remember going through chemo, and then emerging from it, triumphant and full of joy. I survived something so painful, debilitating, and difficult. I was ready to embrace life fully, with a new energy, and enthusiasm. My hair grew back curly, which I loved, and everything seemed so beautiful, colors sharper, images more beautiful. I was psyched to get back to LIFE!

It turned out that it was only in my attitude could I embrace life with this fullness, mental energy and mental enthusiasm, because my body refused to cooperate with the mental mind set! At first, this threw me for a loop. I wanted to bounce out of bed, and attack my day. But my body didn't bounce anymore. The day could be approached with a careful enthusiasm, but the physical ability to do the things I used to do was not there.

It took months before I could drag myself out of bed to begin my day before 10:00AM. My immune system was compromised. My energy was zapped. My mental desire was there, but the body just would not cooperate.

I remember two years ago, I got a call from my church, asking me to come to a meeting. I had no idea why, but I had retired from my job, and went out of curiosity. It turned out that they needed someone with organizational skills to volunteer and help get them organized again. They did not have the budget to hire an Administrative person, and they sensed I had these skills, which I did have.

So I said yes. I can so remember the first few weeks. The printer/copier was downstairs, and every time I sent a print job, I had to go down the stairs. I was having huge problems with pain in my feet, hips, and back. I can remember hobbling down the stairs, and then back up. But I noticed after a few weeks, that I was making it up and down those stairs easier and easier! I was getting stronger because I forced myself outside of my self-imprisonment, and got busy working for a cause bigger than I was.

It was then that I realized I was finding my "new normal". To this day, I can't run up the stairs without being extremely short of breath. But I can climb them honorably (LOL), and get my breath back quite quickly. And my back and hips no longer hurt. I am stronger, and I love my life now. I have found my "New Normal" and I'm loving it.

Now this is not to say I'm not facing challenges. I go to my doctor tomorrow to deal with these bizarre muscle spasms, as I wrote about before. They come and go, for no apparent reason. The doctors can not figure out what it is. I asked you guys, and no one could put a finger on it. A couple of you said you had pain in the ribs, but only where the surgery was. Mine is not this way. Mine is systemic. Sunday and Monday of this week, I was in misery with muscle spasms, to the core of my body. I woke up with them on Sunday, and suffered for two days.

But today was a great day with no pain! So I continue on my quest to find my "New normal". I think the next steps are to send me to a neuro-muscle-skeletal specialist to totally analyze the big picture. Wish me luck with this. If they can not find out the reason behind all of this, I am going to wind up wheelchair bound, and I can deal with that, but would like a medical diagnosis to back it up!

I think exploration into pain clinics is also a good option for me. I will explore all of these before putting my booty in a wheelchair. But I remain hopeful, positive. Prayers would be appreciated. I can't imagine being wheelchair bound, but at the same time, there are much worse things to face so I remain positive, and open to change.

Take care, all of you.

Judy in MI

[RandyW]

IF you want to explore alternatives I know some members do a regular massage and then there is always Acupuncture! They say that works wonders for pain Management

[jaminkw]

Judy, I do hope the doctors can pinpoint what's going on with your spasms. Like I said before, I think that suffering symptoms and not knowing is the worst. This is particularly true when many doctors just shake their heads. Makes one feel crazy.

As far as a wheelchair goes, doesn't sound like you are ready for that yet. I was in one for a couple of months years ago after an auto accident. Not fun but been there done it and know I could do it again. Let's hope you don't have to experience it. Keep us posted after you have the next medical check.

Judy in KW

[recce101]

Hi, Judy in MI! You certainly have the right mental approach to your problem.

I wonder if you have some sort of long-term nerve damage from the Taxol, which sometimes can be very long-lasting. If so, something like Neurontin (gabapentin) can be helpful. That helped me with the peripheral neuropathy which resulted from my Taxol treatments in 2006-07, and I think Taxol can cause other types of neuropathy which are more systemic than peripheral. Anyway, that's one avenue to explore with the specialist. Good luck!

Ned

[Joppette]

Thanks Ned! I see a glimmer of possibilities! I so appreciate that. I will definitely suggest they look into this.

THANK YOU SO MUCH!

Judy in MI

[Joppette]

Well, I'm back from the doc. He prescribed Norflex, which is a muscle relaxer specifically for muscles that spasm. He ruled out nerve damage, after carefully listening to all of my symptons. He said it is definitely muscle issues. So he sent me off to the lab for 3 specific blood tests, looking for a possible auto immune disease in which muscles attack themselves. If this is the case, there is hope for it to get better. He is wondering about this because the problem is escalating and getting worse, which would indicate a disease.

In the meantime, I hope this Norflex is helpful to treat the symptoms, and I pray they find a solution to this perplexing condition. We did discuss possible nerve damage due to taking Taxol, and he didn't think that was it but won't rule it out after other tests.

So I am to try this medication for the next two to three weeks, and see. I will be amazingly thrilled when they can pinpoint the cause and get to a cure. I'm pretty much always a happy woman, even with this debilitating pain, but living without this pain would be a huge source of JOY!!!!!

Thanks for your support and suggestions!

Judy in MI

[beatlemike]

I hope the Norflex works well for you Judy and you get some relief from your pain.

[jaminkw]

At last a doctor even thinks he knows what it is and if not is obviously going to hang in there until he does. I like that. Hope he's right on the first score and the medicine gives you the relief you need.

Judy in KW