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chronic illness

Return To Me: Reclaiming My Life

Reclaiming My Life

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!

chronic illness

Coming Out Of The Fog

::dusting off the cobwebs::

I knew I had been way from the blog awhile but it was not until I logged in today did I realize just how long it has been. It was another reminder of the dark place I woke up in this weekend.

I have not hidden my struggle as I tried to make the adjustment in beginning the disability process. It was definitely a challenge to figure out a new sense of normal for this next phase of my life. The new diagnosis of peripheral neuropathy brought along with it a new treatment. With Cymbalta, I did experience a big decrease in my neuropathy symptoms but it also had some unexpected side effects. Whenever I have seen the TV advertisements about anti-depressants actually increasing depression and anxiety versus treating it, I never understood how it could be possible. Its like taking an anti-nausea medicine making you nauseous. It doesn’t make sense, does it?

I didn’t realize just how far I had slipped until this past weekend. Beyond living with the physical pain and fatigue of my illnesses, I felt like I had just become a shell of the person I used to be. It was almost like I was watching life from a distance. As each day passed my world was becoming smaller and smaller as depression and anxiety continued to take more of a hold on my life. I knew something was off but I couldn’t figure out why I felt the way I did.

On Saturday during an honest, deep, and heartfelt conversation with my husband, it was like something inside me clicked. For the first time in weeks, I feel like I was able to connect the dots. I was finally able to fully hear and understand my husband’s concerns that he had been sharing but I had previously been unable to take in.

It was a hard realization. I had such a flood of emotions. I felt so sad and angry about what I had “allowed” my life to become. I felt like a failure as a wife and a mother. I felt weak and insecure. But I think the most important thing was that I felt something.

I am currently working on weaning off the Cymbalta and finding another treatment for the neuropathy. The withdrawal side effects can be nasty but I already feel like a weight has been lifted off my shoulders. I spent the morning elbow deep in paperwork and making phone calls to my doctors’ offices and while it is overwhelming (and exhausting), I feel like I am moving forward and feeling positive again. I am looking forward to being more active and writing again. I am reading to take back the reigns in my life. My daughter deserves it. My husband deserves it. I deserve it.

My word of caution in writing this post is to take the possible side effects of medications seriously. All of them. I think its so easy to write off some of the potential side effects because they are considered rare or unlikely. It is important to know as much as possible about the medicines and treatments you take and be in tune with your own body.  I have found myself questioning why I did not pick up on the problem sooner. When you have chronic illness, especially if you have multiple illnesses, it can be so easy to attribute symptoms to a previously diagnosed problem versus them alerting you to a new problem or imbalance. It took someone on the outside per se to help me notice that something else might be going on. Not only is it important for you to be aware of your mediations and their side effects but also your family and support circle.

I want to say thank you to each and every one of you for the support that you have given me over the years (can you believe that A New Kind of Normal has now been around for over 6 years?!?). It is because of your support, love, and encouragement that I am able to share my story and hopefully help others who may be traveling a similar journey. You are amazing.

 

chronic illness

Back in the treatment saddle

Yesterday was the first time that I saw my rheumatologist since my surgery. His first remark was about my weight loss which I’ve come to accept as a bonus. When I wasn’t able to eat at all, I would have rather had my twenty pounds back and been able to hold down something more than jello but at this point, now that I’m able to eat at least a little bit more, I’m quite content maintaining that twenty pound loss. The next topic, of course, was my surgery and the nice string of hospitalizations. It was if he looked me in the eye and knew what I was feeling perfectly. He asked if I had just been in one major flare mode since then and I could have kissed him. Its nice when you get to a point with a doctor where they just know. I explained the joint and muscle pain as well as the crazy hypersensitivity and as I explained, he nodded.

We then went over my history of what worked and didn’t work and together we worked out a plan of action. After nine years of chronic illness, a doctor that invites you to be a participant in your care is one of the good ones. One of the treatments that I had the most success on was Savella. I had really good results for about two years (I was even running again!) before it started to become less effective. I went off this treatment almost 18 months ago so we decided to give it another whirl and keep our fingers crossed that it would once again be effective. The only thing I dread is the initial three or four days as the nausea is absolutely dreadful. We are hoping that by easing in over a period of a week instead of starting at a full dose with help. Either way I am waiting until Friday to start in case I still have those side effects which makes work almost impossible.

This morning I met with my pain specialist and requested changing from pain pills to a patch to see if it will lessen the effects on my GI tract. I am not sure he was upset at my request or if it was just his usual less-than-sunny personality. Either way, he agreed and handed me a new prescription and an appointment to follow up in a month to see how things are progressing.

I know I’ve been on the path to recovery for awhile know but now having a plan to attack my illnesses outside of the surgery/adhesion issues feels really invigorating. Now if I can get some sleep I’ll be golden!

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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