Wow, I can’t believe it has been so long since I have written an update about my chronic pain. It has been 9 months since my big surgery last August.
My pain has improved some since the surgery so I am convinced that the nodule/calcification was a part of my problem, but for whatever reason I am definitely not pain free. So this thing is not over yet.
The first 2 months after the surgery were brutally painful with aggravated pain/healing, as well as withdrawals from weaning off of narcotics. I was determined to be done with those meds because I know being on narcotics is not something I want to do long term. Dilaudid helps me so much with the pain, but is so addictive that I never want to have to take it again.
The months after that were confusing. I had a couple of months were I would feel significantly better for 2 weeks or so and then have a very painful 1 1/2 to 2 weeks. It seemed to be related to my menstrual cycle. I would crash right around ovulation time every month which was new since surgery. The good times were so good that I would often get my hopes up that I was actually going to make a full recovery. But the good times were always followed by really painful times. Then the good times started to fade and get shorter and shorter. After the ovulation crash happened 5 months in a row I decided to try to eliminate ovulation with birth control. After trying 2 different kinds I found one that seemed to help (progesterone only/mini pill). I haven’t had any more of those really good times since January, but I have a more tolerable pain level each day without the big down swings.
I also started taking a nerve pain medication (cymbalta) around the same time. I actually took it about 3 years ago but it didn’t seem to help me. I decided I wanted to try it again, and I’m so glad I did because this time it has helped me. That is another indication that something changed with this surgery. The combination of birth control and cymbalta has made my pain a little more manageable.
The medicine helps me a lot when I am taking it easy. I always had my lowest levels of pain while laying down followed by sitting, but it was still pretty horrible. I couldn’t sit for long periods of time and the only way to really get my pain to actually get a bit better was to lay down. Now on this medication I feel a lot better while I sit down. I can sit and feel pretty great for long periods of time. I also can feel little to no pain at all while I lay down! Those 2 things have improved my quality of life significantly. I no longer need to have Tom drag a bed downstairs in the evenings so I can hang out with my family. Now I can sit on the couch or out in a lawn chair or even on a beach cruiser bike and feel significantly better! I am sleeping better because the pain isn’t waking me up through the night and I feel so normal when I lay down that it just makes me feel happy.
The medicine does help me slightly while I’m standing and walking but not much. I still can’t do a lot of things around the house or go grocery shopping or anything like that. But since I feel so much better sitting I can hurry and walk a short distance and sit down and still be okay. So I haven’t had to bring my wheelchair to church in a while because I can recover once I sit down. I usually wait till the hallways clear out a bit before making a mad dash to class… (lol) I love not needing to bring my chair.
The medicine also seems to help me handle a bit more intense exercise. I’ve been able to run a bit further and a bit faster and I feel really good right afterwards. I’ve also been doing some yoga and swimming laps. Being in the water still takes my pain almost, if not all the way, down to a zero, so swimming is definitely a wonderful exercise for me. I get to workout and have my pain recover and go down at the same time. Exercising more has also helped me emotionally, so this has been a big improvement too.
I decided at the beginning of this year that I was going to take a year off from really looking for answers. I’m not researching, I’m not looking for doctors or going to new appointments, and I am definitely not having any procedures or surgeries. I just want to feel as good as I can for this entire year and think about my chronic pain as little as possible. This part has been wonderful. It is exactly what I needed right now and I know I was inspired/prompted to make this decision. I’m also excited that this will be the first year in 7 years that we haven’t reached our $6,500 out of pocket yearly maximum (2010-2015) which is a bonus :)
I am so incredibly grateful for all the many prayers, cards, flowers, calls, texts, etc. with love and support over this last 9 months. I am sorry I haven’t been better about letting people know what is going on, but I just wasn’t ready to deal with nailing down the details of “how I’m doing” yet. I am loving not letting my pain take a front seat in my life this year. So this year you’ll see me sitting outside for hours with my kids, smiling more and just really remembering that this life is so beautiful. There is so much to be grateful for even when things are hard.