Thursday, January 28, 2010

The Pain Management Clinic Experience

I mentioned in two posts ago that I had gone over to Idaho to the Pain Management Clinic. Interestingly, it is the only clinic, and the only pain management doctor, in our entire area.

I have learned how difficult, sensitive, and sometimes touchy the subject and treatment of pain is. Doctors and other providers are constantly vigilant for pain med junkies. They have to be. Some people shop doctors, clinics, urgent cares, ER's, and hospitals for pain meds. They rob pharmacies, steal scrip pads, and alter scrips they legitimately get. They rob from people they know possess them (yes, a little scary). It really is pretty crazy how extensive the problem is.

Pain Management Contracts are entered between some patients and their providers to state in writing how much pain med someone can get in a certain period of time. I think that providers also have to watch their patients who are legitimately on the meds because they could turn out to really, really like them and want more and more. Even when they no longer need them.

Personally, I don't get it. Most pain meds make me nauseous or vomit. The ones that don't certainly don't make me feel euphoria. But I know some people really enjoy them and apparently get a good high. In fact, one of my best childhood friends has fought this addition since his teens.

Anyways, I always feel awkward discussing my pain and my need for pain meds. I have this strong need to not be viewed as a junkie or that I manipulate my husband's position to somehow have better access to them. And I also really don't want to become addicted.

There was also the confrontation I had with a Group Health Hospitalist during a hospital stay in September. Long story short, this yahoo thought I was a pain med seeker after I asked for a pain pill in the middle of the night. So the next day he comes in to do his visit/exam and insinuates that I was looking for a high. Asshole. Fired him, and gave the nursing staff a good laugh.

I guess this is in part why there are Pain Management Specialists. They screen out the users. They also end up dealing with people like me who all the traditional regimens are still not enough. I was apprehensive that they would just write me a scrip for 500 pills of something...... The good news is that they felt we had several options left to try, utilizing both my current opioid meds along with other medications that specifically target nerve pain. THANK YOU, THANK YOU! I was elated that there was hope. Someday, I would like to sleep more than a little here and there due to pain. I would like to be able to move throughout a normal day without restriction due to pain. And maybe someday I could add some physical activity without all the pain. My "high" would be good sleep and no pain!

Unfortunately, they did tell me that their experience with cancer patients with neuropathy (that's what causes all my pain) can be rocky. It can take a lot of fine-tuning. And sometimes they can reach improvement but not total control of the pain. So they ask you to keep in mind that down the road they may have to find a more opiate-based regimen. And once again, a doctor looked me in the eye, with that serious and grim face, and delivered his clincher that the pain often never gets better or goes away. Huh. I'll go with the above paragraph, thany you very much!

I finally gave up trying to sleep tonight but I am optimistic that there ideas can make some big improvements. I like optimism and I like hope. And I LOVE good news!

Time To Update

Wow, it amazes me that I started this blog so long ago. A lot of entries, a lot of "stuff". I will be updating my page in the near future. Any suggestions?

Tuesday, January 26, 2010

We Each Have A Story

I learned a valuable lesson yesterday. I was at my intake appointment at Pain Management of North Idaho, over in Coeur d'Alene (the only pain management doctor/clinic in the entire Greater Spokane area). During a very long assessment with the Nurse Practioner, she asked a lot of questions about my cancers and bone marrow transplant. Since I have the answers down pat, I was just rolling off my standard replies and explanations. It really wasn't until the end of the appointment, and hour and a half later, that it really hit me that she had said that her brother had not survived his transplant. Huh.

So as I gave my medical professional version of my health, she already knew alot of it. But I had failed to LISTEN, to really hear what she was saying. She had a story too. Not too proud of this one.

I wrote her a note today, confessing my self-absorption. I genuinely hope that at my next appointment that she will share with me about her brother, who he was, his journey and hers.

So this really got me thinking about how many other times I have tuned people out because I am not listening. We all do it, but I know I need to work on this. It goes onto my Goals List for 2010.

I should have learned a little about this from my WalMart experience around a month ago. I'm walking along (think very early am to avoid crowds) and a woman says to me, "God, I wish I was skinny like you." I took a couple more steps, turned around and went back. It was the proverbial straw breaking the camel's back. So I say to her, "Well, you probably could be but you have to have alot of cancer, have a BMT, and still be really sick all the time." I'm pissed. I am so tired of people commenting on my weight! Like I think this is attractive?!

So the poor woman who is receiving my months of frustration, who is very overweight and in a wheelchair, says to me, "Honey, that's how I lost my leg. I had lymphoma."

Lesson learned. The hard way.

Friday, January 22, 2010

Cup of Noodles

We recently learned what happens if you put a Cup of Noodles, with all its packaging/wrapping, in the microwave, without water, for three minutes. You get a fire with toxic smoke, lights and sirens with a firetruck and paramedic rig, and a number of young strapping firemen.....

They have some cool equipment though, kind of like the movies. One device is pointed towards the fire and registers all the temperatures.

The nice firemen remove the smoldering Cup of Noodles and then remove the microwave.

It smells really bad.

Then you can either leave for several hours for the house to air out or let them use their smoke machines, which unfortunately leaves carbon monoxide behind. We "evacuated".

Lots of neighbors call to offer their help with the boys because they think the ambulance is here for me. But it's good to know they care.

Ultimately John Paul's snack efforts were demonstrative of his maturity to get an adult if there is smoke or fire and his knowledge that 911 summons the Fire Department. He was going to stop, drop, and roll down the hallway to tell me about the smoke. There is no way I could have maturely handled that!

And 2010?

A belated Happy New Year to everyone! I write you hoping that you all had a blessed holiday season. After a very hectic December and a rather full start to 2010, I am pledged to one of my goals for the year: to get back in the saddle and BLOG!

It seems that I always think there will be a "right" time to start writing again. A juncture in my journey where I can say, "Well, all of this and that happened, but now it's all clear". However, that moment continues to allude me. That turning point, that ah-hah moment, have yet to come. So I jump in with both feet, with a longggggg list of topics and events I would like to share, to fill in the many gaps in my postings.

First and foremost, I made it! I am alive in 2010! I did not know on New Year's a year ago if I would end the year with you. It was an incredible blessing to witness a new year's dawn and to be a part of this new decade. It remains a one day at a time life. Sometimes I am literally withdrawn from it all as I continue to face medical challenges. But through God's grace, with the love, support, and prayers of many, and those who have literally pulled me through each day, I smile as I write you now. I am here. I made it!