It's back to school time and I am honestly excited!! This has been my most productive summer to date, which is ironic because I did absolutely nothing! I must say I now fully believe (because I kinda knew all along) that the key to good health is rest. I have been able to sleep when I needed to sleep; make most meals so I know exactly what's going into them (and soooo loving the kitchen now); and I have stayed out of the sun for the majority of the time. Of course, this can't go on forever (gotta make that paper!), but I feel so blessed to have been able to take some time off without worrying too much about my pocket.
So, what now? I'm going back to work. Do I revert to all my old habits of over-scheduling things and running myself ragged? Of course not! It's time now to make sure that my schedule includes days off, spaces between classes, rest time, cooking/juicing time...in a word (or two), healing time. Luckily, with my profession (teaching music), that is possible. I am able to schedule my work around times that suit me and that is such an important thing when dealing with this condition. In my utopian view, everyone should be able to work at their optimum time of productivity, but of course I have to be realistic and know that it's not always possible. At the end of the day though, I have to do what's right for me. Even if it means making a little less money and living a little more simply.
Before the summer break, I was miserable! I could feel myself becoming irritated by every sound. That's kind of a concern when you're a music teacher. I was getting physically ill - chills running up and down my body and my teeth paining whenever my students rubbed their hands on the carpet or touched their music bag or handed me their books. I was no longer able to be in the same room with the playing of a violin. I just couldn't wait for each day to finish so I could go home and sleep. This was despite making sure that I took all my medication as prescribed; something I've been bad at in the past. The day after my final day of work, I had a doctor's appointment. I told her everything I was feeling. She saw where my hair loss had increased- I had three large bald patches; something I have gotten used to over the years, but is still a concern. I'm going segue here a bit...
My hair story has been a strengthening experience. Lupus is the reason I cut my hair in the first place. I had sisterlocks that reached the upper part of my back, but little by little, the locks continuously fell out. The thing is I had so much hair, it was easy to cover up. After a while though, it was just an awful feeling of unevenness and not knowing when two or three or more would fall out, so I cut it all off in December 2008. I can still see the faces of the ladies at my hairdresser who knew me from prep school days and had always admired my hair; they were in shock, sitting there with their mouths open as I committed this sacrilegious act! I refused to look in the mirror while it was being done, because I had no idea what I would look like and if I would like it. I knew, however that whatever it was, I would feel better without it than not knowing when it would decide to forsake me on a daily basis. When Sharon (my hairdresser) finished and I looked in the mirror, I loved it! I felt so relieved!! I didn't care that I was the only one in the room rejoicing. It was such a freeing feeling and I had no regrets. Since then, I have continued to experience hair loss from time to time, but it's nowhere near as distressing as the first time. I've never been emotionally attached to my hair or being able to style it in a million different ways and I'm usually fine with whatever simple, presentable style it can produce on any given day. Whenever I start losing my hair though, I cut it so that there's less pulling
with brushes and combs and (mainly) so I stop freaking out in the shower
when there's hair everywhere! By the way, props to Sharon. She has been with me throughout this entire journey and has ALWAYS found a way to make me feel confident, despite my hair issues.
So, right...back to the doctor. I'm there and she's all, your blood work is showing improvement, but there's obviously still a lot of inflammation. It's also a double whammy because some of the medications can cause the hair loss and other issues I had been having. She then called in my dermatologist (who happened to be in the building) and she told me I would need steroid injections in my scalp. That fact didn't settle in until two days later and I thought, "I seriously agreed to get injections in ma head top?" After two days of rest - staying inside, sleeping when I needed to, light exercise - I reluctantly attended my appointment with the dermatologist. She took one look at my scalp and decided I no longer needed the injections as the inflammation had obviously gone right down. Yay!! After only two days, that was such encouraging news! So, I took it as an indication that I was on the right track. She gave me a few topical medications and since then, my hair has been growing back in most places. The thing with hairloss (or alopecia) as a result of lupus is that if the damage is not controlled, the hair follicles can die and if so, the hair is unlikely to grow back. That is the case for parts of my scalp. It's funny because now everyone thinks I'm trying to grow a mohawk, but what's happening is the middle panel of my scalp is very healthy and thick, but the sides are either bare or thin. It's just how my hair has decided to grow (and not grow)! I'm thinking I may need to give in and embrace it ;-).
All in all, I have had a great time of healing, growth, patience, tolerance for the kitchen, rest, and above all, peace. I am happier and feeling more creative. I have learnt more about this illness than ever before and about the natural treatments that I can incorporate into my everyday life. My next step is to work towards being medication-free. We all know from ads on tv that the side effects of most drugs tend to far outweigh the symptoms of the illness itself and the long term repercussions can be quite serious. I made the decision that I would give my doctor's plan a fair chance by taking my medication as prescribed so that with good results in the horizon, they would be reduced or eliminated and I can hopefully stay healed with the whole healthy lifestyle thing. My next appointment is in October near my next birthday (29 years old...yikes!), so that's my goal date to see drastic improvement. In the meantime, as much raw food as possible, a schedule with free days, exercise, not getting stressed out on the road (that's hard in JA), limited sun exposure, and generally a calmer, more peaceful approach to everything.
I want to close by saying thank you for reading. It doesn't matter that I don't know who you are or what you think about my blogging. Just knowing that anyone has taken the time to read these words has given me a lot of drive in this process. I find myself wanting to do the things I say I will do even more now because I have put it in writing and put it out there for virtually anyone to see. As much as I am taking control of my health for myself, your participation in the process just by reading has helped me to hold myself accountable for all my goals. Thank you again and again.
Blessings.
