When you have an invisible illness to the outside world everything looks good. You look normal. You look healthy. You look like you’re doing ok. What they don’t see is the internal struggle. The internal dialogue to hold it all together. They don’t hear your internal pep talks to keep going. Where you tell yourself you can make it through the task at hand. That you can make it and keep going. That you promise you can take that nap/stretch/ect once everyone gets where they need to go, dinner is cooked, or any of the daily activities of life.
I’ve said it before and I really think it is true for me. I think one of the reasons that I am able to push through when literally all my body wants to do is collapse is because this is what marathon training does. It trains you push your body to the limits. Push your body further than you think it can go. That even when you feel the tank is empty there is just a little bit more to get you to the finish line. So I’ve fallen back on this training not for training but day to day life. Some days it is easier than others.
That being said, I’m tired of living like this which is one of the reasons I wanted to start Natpara. That and the fact that I want to protect my kidneys and the other side effects.
I was nervous about starting my daily injections of Natpara. It was overwhelming. There was a lot to think about with the pros and cons of starting this medication. I was also nervous about the actual process of mixing medication and giving myself an injection. There is a lot to this, but both my doctor and I felt the benefits outweighed the risks.
So I started.
The process: The medication once approved and all cost factors are taken care of is mailed by a specialty pharmacy. The fact that this medication costs $10,000 a month makes for a lot of hoops to get to this step. It is shipped in dry ice and must be refrigerated upon arrival. Once medication is on hand, an appointment is made with a Natpara nurse to walk you through mixing medication, using the injection pen, and finally how/where to do injections. I was nervous. I’m not good with this type of stuff. I had a friend who to my luck is actually a trained pharmacist come to hold my hand so to speak and be my backup eyes and ears. She even came next day for my first “solo” injection. It helped. While there is a lot to it, they do make it very user friendly but there is still learning curve.
I have been on Natpara now for only 4 days. 4 doses. 4 days of being out of the fog. It is amazing how quickly the Natpara effected me. A friend asked me how I felt and here it is….
I feel like myself. I feel like myself prior to my surgery. It was like coming out of a fog. For 2 years I have literally needed not as a luxury but needed, a daily nap to function at a much lower level than I had been used to. I felt a clearing in my head as well as the lower calcium can leave you with what in the medical profession they refer to brain fog, but in your day to day life means you use the wrong words, scatter brained, have trouble remember names/address of people and places that you should know. I’ve also felt like I was living in a different body. The body of a much older person who Aches, pains, tires easily.
And literally in less than these 4 days, I feel like me again. The other day I was making dinner at the hour that can be very difficult for me where I’m just pushing through till it’s socially acceptable to put PJ’s. Actually I didn’t always wait for that socially acceptable time either. Anyway, I was making dinner and realized not only was I making it but I was literally dancing around the kitchen while doing so.
And while staring this medicine does not mean that I no longer have to take supplements, I will take less of them and no longer take some prescription meds. There with anything will be some bumps along the way, but I will deal with them when the time arises. For now, I’m going to enjoy being me:)