A few weeks ago, my friend JJ invited me to speak at an event for her chapter of the Junior League.
Now, if you didn’t grow up in Mississippi, this might be no big deal. But if you did, whoo-wee, this is the big time. I won’t go into all of the Junior League deb drama, but let’s just say it was important. I agreed, with some trepidation, but this was such a good cause that I couldn’t resist.
I wasn’t feeling particularly well at the time, but I figured it was weeks away, and surely, surely I would be better by then. And I was. I was gloriously without pain last week at this time, jaunting off to Texas for a professional meeting, ready to take on the world. And I did. I gave a talk at WD’s Early Career Workshop, and I held a meeting of 155 women planetary scientists, where I gave a pretty daring talk, if I do say so myself. Things were going great. And then things were going not so great. As you know, things kind of went to pot on Tuesday and I’ve been recovering ever since.
Both physical therapists were stunned by my condition. One checked my spine (not twisted) and then did myofascial release to soothe the flare up and relax the muscles. The other skipped the scar tissue work, instead working exclusively on the muscles between the spine and scapula, trying to loosen the tugging and relieve the pain. Both helped greatly, but it wasn’t enough.
My primary care doctor, late in the day on Thursday, diagnosed me with neuropathy, and sent me to a specialist to test the nerves to see which one was triggering these bizarre symptoms (incredible pain all over the upper part of my body, tingling skin, feeling of pins and needles sticking into my skin on both arms and back, tremors, chattering teeth). Once the specialist found the misfiring nerve, he said (by sticking a needle in the nerves, sending an electric shock down each, and testing to find which one reproduced the symptoms), he could kill the nerve entirely. This would relieve the pain.
Of course, my physical therapist explained later, it would also introduce new symptoms — numbness where the nerve was, and possible loss of motor control if the nerve happened to be one that controlled my extremeties. Nice.
But the pain. The pain must go away.
And so we wait. I have an appointment with the specialist early next week — which is wonderful — but still, it’s hard to wait patiently while your arms and back tingle, prickle, and at times are covered with a thick layer of pain oozing from the pores, originating (we think) from that spot in the back between the spine and scapula, which itself is screaming in anger at you.
I have new medicine, specifically for nerve pain, and I’m trying not to take the opiates, because they make me fuzzy, and I can’t write my book(s) while I’m fuzzy. Heck, I can’t even blog properly when I’m fuzzy. And I don’t like that at all. So I’ve started on a heavy-duty drug, neurontin (don’t say I never tell you anything!), and as it’s ramping up, it seems to be giving me some relief. I’m able to sit up again today, to type, to think, and that is a blessing. My hands are shaking, I have tremors, and the prickly feeling is still there, but the pain is not so overwhelming, all consuming as it was on Tuesday.
And last night, after several days of rest and physical therapy, I was able to go out and speak to the Junior League. I wasn’t steady enough to drive to Great Falls myself, but my wonderful husband and children drove me out there, dropped me off, and then went to play at the Chick-Fil-A playground :-).
It was an absolutely lovely evening. The women of the Junior League were warm and welcoming, and I very much enjoyed my conversations with them. The president did a wonderful welcome, the fundraising chair told those assembled (Junior Leaguers and friends) all about their signature project, the Children’s Science Center, and then they introduced their two Celebrity Scientists — and one was me! After my talk and the closing pitch (fascinating), I talked to a few people and then felt the tremors returning. Too much excitement, I guess, but the pain was back, and my arms were tingling, and I needed to lie down. I asked JJ to escort me to the door, and she did that graciously, steering us on a straight path. I thanked the hostesses, was pleased to learn about the benefit the owner of the house had held recently for pediatric cancer, and then saw the light of the minivan waiting for me outside.
I’ve never been so happy to see a minivan.
So yes. I used my spoons to talk to the Junior League last night, and it was a beautiful event.
I apologize for the medical information involved in this series of posts — I feel self-conscious about telling you all this, but I’ve heard from so many of you that it is useful, so I keep writing, in hope that my words will help someone else suffering from cancer and afterpain. I thought that I could stop after my treatment — but I now understand that the medical consequences and fallout don’t just go away when the cancer does.
You are an inspiration – the way you keep going and going, but know too that people most certainly understand when you need a pause.
And to echo PunditMom and TechSavvyMama, I’m not that far away either, if you need anything.
I hope the long awaited warmth of the sun brings you some comfort and relief today.
Thank you. I just don’t WANT to pause. I don’t want to waste a minute of LIFE!
🙂 Thanks. There’s nothing really to do. I just need something to WORK.
Long time reader here but, I think, first time poster. I had a benign brain tumor treated with radiation back in 2001. The tumor is located in the tri-geminal neuralgia of my brain. These are the nerves that feed into my left cheek, left side of my nose, and left side of my lips. For YEARS I had tingling and itching in those areas. I also had ringing in my left ear that sounded more like a drum beating that anything ringing. My Nuero doc was really puzzled by it but at the time it was coming and going so I didn’t feel it was necessary to medicate for it. In early 2009 the symptoms became constant.
Then in Nov. 2009 I was diagnosed with bladder disease, Interstitial Cystitis, and the treatment for that is a lifetime on 2 medications. One of them, Elavil, an antidepressant, was prescribed in a very low dose to help the other medication work. I had 2 fantastic side effects from the Elavil. First, was regular sleep and the second was that the tingling/ear ringing/itching totally disappeared. It is a cheap drug $10 for 30 days without insurance and has been VERY effective.
I don’t know if it is strong enough to help you but I wanted to let you know about it. I have not seen my neuro since I was diagnosed with IC and started on Elavil but when I see him later this month I will be sure to tell him. For me, it’s been a miracle.
I have been told that Elavil is sometimes prescribed for pain.
I hope you find relief soon!
Thanks, I’ll ask my doctor!
I really, really hope the specialist can help. And as always, I”m here for you. Please ask me.
Thanks. I see the specialist this week. If we decide to kill the nerve, I’ll need someone to watch my kids while WD holds my hand (and listens to me scream, I’d bet). . . I will call, if that’s ok.
Have you thought about acupuncture? I don’t know if it will help with this, but it did a wonderful job for me when I was pregnant and had a pinched nerve, tingling, pain, and numbness in my shoulder and arm. I think there are some really good people at the University of MD medical school in Balto doing research in this area — I participated in a study when I was younger investigating the use of acupuncture to control pain from wisdom teeth surgery and it really worked — I went from shaking in pain to asleep in five minutes.
I’m so stubborn about accupuncture because of my fainting and whatnot. But I’m getting desparate. Thanks for the suggestion.
First time poster, although I’ve lurked. Another alternative therapy you may want to consider is hypnotherapy. I know it sounds a little crunchy, and I was a cynic myself until I trained in a program that was studying the use of hypnosis for several medical conditions, including the control of bone pain – one of the most resistant types of pain there is. The studies we were doing turned me around. I could not believe what we were hearing from the patients in terms of pain reduction as well as improved quality of life. People vary in their ability to be/use hypnosis effectively, but it may be a viable option. If you’d like help finding a credentialed provider, let me know (I’m not one, as my interests lie elsewhere, but I can help!)
You did a beautiful job and re-awakened the curious, museum-loving child in everyone last night. I am so sorry you had to use your “spoons” but I want you to know they were certainly well used!
I’ve had two major struggles with nerve pain (femoral nerve and trigeminal neuralgia) and both wore me to a frazzle. Nerve pain is impossible to describe to anyone who hasn’t experienced it, so my heart just breaks to know what you are going through right now. From my TN journey I will share that you may end up going through a few different medications or dosages until you find the right thing for you, but once you hit the right med/dosage, it can make a world of difference. So if the neurotin ends up just working short term and then being problematic, don’t give up hope — ask your doc what else you can try. Every time I hit a bump in the road with my TN, my neurologist had another trick up his sleeve, and that made a big difference!
Count me in on the team if you need additional help and there’s anything I can help with!
Oh, that’s good to hear! It’s starting to work. Starting. To. Work. I’m cautiously optomistic, and I’ll let you guys know how it goes!
Thanks for the tips about switching meds later on — very impt.
Yay! You got neurontin for your pain. I was going to immediately recommend it since it did wonders for my neuropathic pain. I hope that it helps you since you deserve to have something positive to help you on your way and hopefully through this. My only issue with neurontin (gaba pentin) is that going off of it gave me insomnia for a week. It is an amazing drug, though, and I wouldn’t be here without it. That and yoga….
‘Tis the big time indeed, miss. And still is to a whoooooolllle lotta folks around here. Can you nurse 8 ounces of coffee for two hours? A junior leaguer sure can. 😀 Way to fight through your night post-JL, Sus.
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