I created a post in October stating my excited for my return to blogging. I was so ready to get some order and routine back in my life. I had a plan for reclaiming my life but somewhere along the way, things went wrong.
As you may know, I suffer with chronic migraines on top of everything else. I had a neurologist that I loved but he decided to move elsewhere. I ended up seeing a temp neurologist for my regular 3 month checkup while they searched for a full time replacement. Previously we were using optic nerve blocks and trigger point injections in attempts to prevent migraines and/or knock down the frequency. Since I was still having migraines rather frequently, the temp neuro thought that I would be a perfect candidate for Botox so he got the ball rolling.
It took almost 6 months to get the Botox approved with my insurance and to schedule with a new neurologist. My appointment was finally set for November which was consequently within two weeks after my post about making a return to blogging. When my new neurologist walked into the exam room, I about fell off the table for two reasons. Reason #1: My new neurologist is actually my old neurologist whose practice I quit years ago because I felt like he never listened. Reason #2: The amount of needles I saw on the tray he was carrying was terrifying. My round of Botox included 31 injections. THIRTY-ONE. I wanted to pass out.
I got through the first 20-25 shots relatively well but after that I began to feel very sick and weak. My neurologist said that it was not uncommon and that I was actually one tough cookie considering I was able to stay strong as long as I did. The process was far from a walk in the park. I think that migraines and injections are going to be a forms of torture in one of the circles of hell (check out Dante’s Inferno). After what felt like eternity, the appointment came to a close and I was on my way home.
Shortly after that all hell broke loose.
The pain was excruciating and never ending. I have never experienced such intense migraine pain in all my life and it also felt like the migraine extended down my spinal cord. That same throbbing and pressure extended all the way down. It hurt to move. It hurt to lay down. Everything that I have used in the past to ease my migraines was no longer effective. There was no escaping the pain. I couldn’t sleep and there were moments where keeping myself breathing took all the energy I had.
I don’t know what the Botox set off but it was definitely the source as a lot of the side effects I had never encountered until I got the Botox. The neurologist didn’t want to acknowledge it initially but after we tried altering my other preventative medications and having an infusion, he figured it out. He said that it was likely that the Botox was too much for the muscles in the back of my head and neck which then caused the spinal migraines. He ordered a MRI for next week and prescribed me an anti-anxiety medication to see if it would help relax those muscles to decrease the pain which in turn would help me sleep and feel like an actual functioning individual.
For the first time in a long time, I felt like I was finally able to be the wife and mother I had been longing for. I had hope and dreams for what was become. My creativity and inspiration had returned and I made lists of things I wanted to achieve both in blogging and in my personal life. I finally felt like I was reclaiming my life again. I was finally going to be able to return to being me. I was finally going to be able to look into the mirror and recognize the person staring back at me. It felt so good.
Then just minutes ago as I was writing this post, I got call from my neurologist and he wants to stop the medication. Even though I was able to make a long list of all the positive changes it has allowed me to make, he thought it wasn’t worth risking the side effects. When the nurse called to deliver the news I cried on the phone with her and asked that she talk to him again and plead my case. I have worked hard with my pain specialist to wean off 80% of my pain medications and have stopped two others that were not nearly as effective for my fibromyalgia pain as the new medication.
I had all intentions for this post to have a happy ever after ending with balloons and confetti. I felt like I was finally reclaiming my life and couldn’t wait to tell you everything I had planned. I still have a lot of plans that I will definitely be sharing with but first, in order to continue reclaiming my life, my first order of business is to pick up my toolbox and go to work as my own advocate before that reflection in the mirror starts to fade.
I refuse to give up.
AWESOME UPDATE: Later in the afternoon after I published this post, I was able to have a conversation with my doctor – a real, honest, raw conversation – and he is extending my prescription at least until we get my MRI results back (he doesn’t think there is a tumor but is concerned about possible fluid buildup causing pressure). Once we have the results, we will sit down together and go over everything in detail and come up with a plan together on how to proceed! A major victory for the spoonie team! This is proof of important it is to become your own advocate. Make sure your voice is heard. Whatever it takes. Don’t worry about being annoying or inpatient. The nurse kept trying to end the conversation but I knew I had to finish and say what I needed to say. I wanted to be sure that everything was out on the table and in this case, it worked. Advocacy for the win! Now that hope is restored and I’m feeling like a chronic badass, I can’t wait to share what is in store for the future tomorrow!
6 comments on “Return To Me: Reclaiming My Life”
My heart breaks for you! So many of us constantly have to deal with similar issues with medications, procedures, and doctors, and it is really, truly, difficult. The doctors forget that we are trying to live DAILY with these illnesses. Sending prayers for you specifically, and for the chronic illness community at large (including myself!) for peace, patience, and improved quality of life. Hugs!
Thanks you so, so much! As an update, advocacy prevails! I was able to have a conversation with my doctor and he is extending my prescription until we at least get my MRI results back. At that point, we’ll go over everything and reevaluate! I fought like a girl and won 🙂
Way to go Jamee! We are pushing for a lumbar puncture for my teenage son (who also suffers from chronic headaches) to measure the pressure. The MRI didn’t show anything, but we know something is going on. We know our bodies best! Best of luck to you!
The hardest part of chronic illness is that when you seem to get traction something else always seems to go off the rails. I’ve been stuck on this hamster wheel for over four years but I’m not giving up either. I love that you too refuse to give up. There are days I pause and I try not to be hard on myself and go back at it the next day calmer and clearer. You are your own best advocate and I love your tools. You are an inspiration and I agree that you are a tough cookie. Sending you love and prayers. “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” 2 Corinthians 4:17
Thank you so much! Your comment means a lot! I was just logging in to post an update! Advocacy for the win! I was able to have a conversation with my doctor and he is extending my prescription until we get my MRI results back and we will sit down and reevaluate everything then and come up with a plan together! Proof you always need to speak up! Spoonies – 1; Chronic Illness – 0!
[…] This year things are going to change. 2017 is going to be the year that I reclaim my life. […]