Tuesday, April 30, 2013

I'm Not a Drug Seeker, I'm a Life Seeker

Oxycontin 10mg Slow release: This is what independence looks like 20120811-122152.jpg
If you are on pain medications, especially narcotics you probably have had it happen. You probably at some point have been called a pill seeker, a druggie, a junkie, a pill head, a stoner, a loser. Crap I have heard them all. Sadly I've heard most of these names being thrown around by doctors, and nurses. I don't judge them though. It just saddens me to the core. It saddens me that they have become so jaded. Cold, and judgmental to people like me.
Ya people like ME. People in pain. That have pain. Real life pain every day. Pain that is there when I wake up. When I go to sleep. The pain is there when I read a story to my kids. Pain when I cook them dinner. Pain when I play with them. There is pain when I make love to my husband. Pain when you see me smiling in the grocery store. Always pain. Sometimes I can hide it. Sometimes I can't. Sometimes it leaves me in bed for days. So what's a girl to do? I have a life to live. I have kids to care for. A husband I love to spend time with, and things I want to do. I never asked to be pain free. Just have a tolerable pain level. Just please make me not be a bitch so that I can live. Please? Someone? Anyone? And while you are it don't judge me for it. Don't think I only wan't to take medications to 'get high' or 'have happy pills'.
When I was diagnosed with Ehlers Danlos Syndrome one of the first things the geneticist suggested I do was address my pain. He could tell right away I was in pain, and looking over my records how could I not be? I have arthritis, bursitis, scoliosis, sacroiliitis, Migraines, and blah, blah. The list goes on. Then there are the random dislocations, and sublaxations. The biggest thing he could "see it in my eyes". So he wrote in my letter of recommendation to my PCP for pain management.
Pain Management? What is this Pain Management. When I got to the follow up with my PCP he was thrilled with the idea. He said that in the state I live in he is only allowed to write two narcotic prescriptions a year for the same diagnosis. If I need any more than that I have to go to pain management. He then informed me that he had been wanting to suggest pain management to me, but didn't know how to bring it up. My PCP is really shy. Suggestions like this don't come easy. Who knows how I might react? He then told me that he can tell by body language, and my vitals etc. That my pain has been a problem for some time. When I say I have a pain scale of a 3 it's really an 8 or so. That this is common in chronic pain. When you live so long in chronic pain you tend to forget how bad it is. In other words you build a high pain tolerance. He then told me he thinks this is the source of my fatigue. Pain makes you tired. Really doctor?
So he writes the referral, and I'm unsure. As my sister was in pain management, and those programs can be so demeaning. They drug test her. The staff was rude to her. So I was scared. This clinic my sister went to treated her like a drug addict. My doctor assured me that he would NEVER refer me to a place like that. He was right. This doctor was wonderful! She knew of EDS, and was so knowledgable in Migraines. She has been a jewel in my care. She has helped me more than anyone. She explained pain to me. How it was effecting my brain. That being in pain was effecting my mood. Yes pain was making me a bitch. And yes pain was making me tired. Yes pain played a role in effecting your blood pressure, heart rate, respirations, and even body temperature. Hmmm You don't say?
It took her a long time to get through to me about medications. To convince me that I needed a daily low dose pain reliever. She gently suggested many times. Then she finally on the last visit when my BP was high said "look you normally have low BP. Your BP is high. You are pale. You don't look good, and your being short with me. Your always chipper. YOUR IN PAIN SISTER! Now what do you say you take the meds daily? Give it a month okay? Come back, and see me. If It don't work we can find something else. TRY IT ONE MONTH DOCTORS ORDERS!" She then patted me on the back, and assured my I was no drug addict! I was far from one. That I was on a very low dose. Far from the highest dose. That I don't take near the pills she ever would be concerned for dependency. In fact I under medicate at times. I let my pain get out of control at times. She told me that if I ever felt things where getting out of hand come to her. Also if she felt things where getting out of hand she would come to me, and we would discuss options. I was not an drug addict. I was a patient in pain who needed treatment. No different than a diabetic. Pain medication is just that medication. It has risks, but many benefits when used probably. I agreed. OMG that conversation helped me so much. Finally a doctor DIDN'T think I was a pill seeker. Yet still though I left her office thinking I will show her! I don't need these pills! I can fight this on my own! I'm a rebel I know!
I was sleeping 10 hours a night. And taking a nap or 2. When I was normal I slept 6-7 hours a night. Maybe 8 on a very bad day. At this time of my life even awake I was tired. My brain always drifted. I yawned all the time. I was always tired. I dozed off all the time. I couldn't be trusted to drive more than 15-20 mins. I would fall asleep at the wheel. I was a tired mess. Always sleepy. Always wanted to go to sleep.
Week one on the meds I notice I can cook more. This is cool. My hubby noticed I'm not as short tempered. He said "I'm acting like myself again". I noticed I had this new desire to do stuff. Like it wasn't so hard to clean, and cook anymore. I wanted to go places.
Week two on the meds I noticed I was sleeping less. I no longer needed the naps. Huh this is cool. I was not dozing on the couch sitting up as much. So this week I get an idea. I change my dosing schedule. These meds are slow release 12 hour meds. So I start to take one at bedtime. With my nighttime meds. I know my CPAP is effective it's been tested. So if I'm not sleeping well, it's not that causing my fatigue. OMG this switch was ew lala! All the difference in the world! I must have been dislocating in my sleep? Maybe? Or I just had bad pain in my sleep? Whatever this worked. I noticed doing so I got my internal alarm back! I wake up at 6 or 7 every am. Then I take the second dose with mid day meds.
Week three I was convinced. Why didn't I do this sooner? Man why am I such a rebel? These meds have given me my life back! I still have bad days. But I have way more good days now! I can drive, and not fall asleep. My boys, and I took a road trip even. Just myself, and 3 boys. What a way to gain back some of my independence.
I needed it so much. I had been feeling the whole poor little me thing. So now these new meds have given me a chunk of my life back. So I can be me. Do what I do. Without help of others.
This is what independence feels like
These are elk I seen on the way. There where about 50 total. Aren't they beautiful?
You could see for miles. It was hard to go home to look at 4 walls. Pure beauty here. I did it all by myself!
I'm not a drug seeker. I'm a seeker of a life to live. I'm just a regular girl with lots of issues who has a life to live. And I will do what ever it takes it LIVE.

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