I Expected Chocolate But Life Gave Me Lemons

So, I have been stalling on writing this blog for two months now. This is due to several reasons, but I think a main one is I was not looking forward to discussing/putting out all the difficulties I’ve had these past couple months. One might say this is a form of avoidance… you don’t know me.

But I know me. And I am not yet used to confronting all the hardships I experience and then immediately sharing them. I usually share things after I have gone through the difficulties and come to terms with them. And to be quite frank, I’m still trying to figure out what the fuck is going on with the Botox.

Nonetheless, here we go.

The first couple weeks of the Botox were absolutely amazing. I got the first round of Botox shots in my right arm near the end of February. Then, about two weeks later I received another round of Botox around the base of my neck, my shoulder blades (specifically my right shoulder blade), and a few shots down my left arm.

Now as I mentioned in my previous blog, for the first couple weeks after getting the shot in my right arm I could do several tasks that I have not ever been able to do with my right hand. I buckled my seatbelt with my right hand and unbuckled it. I was able to put my key in my car ignition with my right hand. Overall, I had more control and dexterity in my right hand as the muscle tightness and spasticity greatly decreased which lead to increased stability and functioning.

The pain in my neck and shoulders greatly decreased in the week or two after I got the shots in those areas. This was such a blessing because the pain in my neck and shoulders can be so debilitating it becomes difficult for me to move. Unfortunately, I am exceedingly hardheaded and refuse to give up my independence for anything, including any amount of pain. So I tend to ignore pain and continue on with my daily activities to the detriment of my body. Yes, definitely the best option.

My left arm was another story. My left arm is much more functional than my right arm. However, it is still tight and prone to spasms. Thus, I assumed that the Botox would allow for more stability in my left arm and hand. I don’t know if it was the amount of Botox I received or if this arm was just not a fan of the Botox. My left arm became very heavy and very weak. The muscles felt very lethargic. I found it extremely difficult to even hold up my 32-ounce water bottle when full.

And just a side note, I may be petite and have a physical disability, but I am not weak. It seemed I lost more functioning in my left arm than I had gained. This was so scary to me.

Another piece to add to the puzzle is I had been working out my upper body with a weight machine. You see, I had woken up one morning in February in such pain that I couldn’t move and thought I was paralyzed. I realized I needed to kick my ass in gear get into better shape in order to obtain a better handle on this pain. Thus, Greg and I bought a bow flex weight machine. It took me a few weeks after buying the machine and getting the Botox to realize I was overworking my muscles with the machine.

An interesting thing about Botox is how it dulls your pain. Thus I didn’t realize I was over exerting myself until my arm, neck, and shoulder muscles were so sore they all tightened up to the point where I was using the heating pad and Bengay multiple times a day.

There is a very good possibility that I overworked my muscles within the first 2 to 3 weeks of using the bow flex. Even after I had received the Botox shots around my neck and shoulders and the pain had decreased, it came back at a pretty intense level. It took me a little bit to realize the correlation between the workouts and the pain.

Sometimes I am much too strong willed for my own good and refuse to accept I can’t/shouldn’t do something or that I should slow down. You can ask my husband; it annoys the shit out of him. Such is life.

I bring all this up to say I don’t know exactly which factor contributed to the pain and other difficulties I was experiencing or how much.

Since receiving the Botox shots, I’ve had several positive experiences. However, I have also had several negative and disheartening experiences. While my right hand did gain functioning, my left hand seemed to have lost some of its functioning abilities. This was extremely terrifying for me. My left hand is my go-to hand that I have relied on for almost everything throughout my life. There were some points during the last three months where I felt like I couldn’t do things that I had been able to do previously with either hand.

A couple examples of this are hooking my bra closed and applying deodorant to my under arms (imagine no longer being able to do simple tasks such as these). My muscles were so weak or lethargic in both arms that I lacked control in both. Many times both arms felt exceedingly heavy. I don’t know if this was due to the Botox, overworking my muscles by exercising, or a combination of both. I guess this is why they have research trials with controlled groups and all that shit.

One of my best friends helpfully suggested I should try doing things in a different way than I have before. I am so grateful to her for making the suggestion because for some reason, I hadn’t thought to try alternatives to the tasks I have been doing my entire life but was now struggling with, a different way.

As an example: putting thin runny cream in my right palm to spread over my face. Once my muscles became weak and lethargic, I had little ability to hold my arm still so I would have spasms and the liquid would fly all over hell. I started putting liquids and creams that I wanted to apply to my face onto the back of my right hand. I was able to keep my arm steadier when I laid my palm flat on the countertop. So using the back of my hand was an ideal solution.

There are several tasks that abled body people do that I do differently because of my disability. I believe coming up with these alternative solutions has contributed to my creative mindset. Ironically enough, it appears that once I am used to doing something one way it becomes difficult for me to picture doing it a different way.

In essence, I had to do some occupational rehab therapy with myself. Trying to teach myself different techniques of completing fine motor movement tasks while remain patient with my body was a struggle to say the least. I also struggled with completing exercises on a regular and consistent basis. There are many more other productive things I’d rather spend my time on – like cleaning the house… or eating chocolate.

Overall, the past few months have been filled with exhilarating highs and frustrating lows. Because I’m always trying to improve my situation with CP and pain, I cannot say for certain what Botox contributed to in negative ways versus what overworking my muscles contributed to. Or if it was a combination of both. I don’t regret getting Botox and I am now more aware of it affects, side effects and perhaps how much injections I should get – a lower amount in my right arm, none in my left arm, and perhaps a few more in my neck and shoulders for pain.

I have focused on exercising my body as a whole. I do light weight work on the bow flex, I do yoga to help with back pain, and I ride my trike for more physical activity. No medication is a miracle drug that will fix everything. But, becoming more holistically and physically fit, in addition with the Botox, should lead to increasingly positive results.

So it wasn’t perfect, and required a huge learning curve with many ups and downs. But with Greg’s and friends’ endless support, I made the best lemonade I could.

Until next time.

Lorraine