I almost forgot to let everyone know about my oral surgery! As you may have guessed, it was no big deal - since I had almost forgotten about it. I find out next week what it was, but until then the spot seems to be healing and is only a minor nuisance.
The Neurontin seems to be fine. Although I haven't been sleeping well the past few nights. I felt pretty great last week. To note: I didn't take my Methotrexate injection last Sunday. This also was the first full week of the Neurontin, and cutting back Trazadone. A lot of different factors; it will be really interesting to see how I feel this week after taking my MTX injection once again yesterday. Brad and I are really intrigued with this. Keep you posted!
The major news for today... I am now on medical leave from work. This happened almost out of nowhere last Tuesday; today is my first day. When I was at the Mayo Clinic, the doctors there were very adamant on me closely following the treatment plan outlined for me in order to get healthy again. This consists of following a daily routine that includes a lot of stretching, small bits of walking, meditation, education about the disease, and at the top of the list, fun. The Mayo Clinic wants me to do things that make me happy and spend time with my friends and family. Research shows that fighting illness is more successful when your heart is happy and you feel enveloped with love from family and friends.
In my last post I didn’t mention the conversation that I had with my new Rheumatologist about this. I told him that my employer needed updated FMLA documentation. I explained that currently, I have been working from home due to an accommodation that needed to come to end end soon. For lack of better term, I needed to either “shit or get off the pot.” They would be willing to let me work from home for another couple of weeks if the goal was to either return, or go on short term disability (medical leave) at the end of that time. I told him that my work wanted to help me and was very supportive of my treatment. They are willing to support me however I need to get me healthy again. This is a true statement.
Dr. Sassy, of course said “Well, if you can do your job just fine from home, then why can’t you just do that?” I told him that I can’t do it forever, and my job needs me to make a decision. He asked, “Well, are you ready to go back to work full time?” “I can hardly make it to the end of my driveway on a bad day,” I replied. He responded, “Well it sounds like your work is willing to let you take time for your treatment. Maybe it wouldn’t be so bad to take some time for yourself and kick this thing.” That was it.
The following day, I spoke with my HR contact about this, and it was then that I made the decision to begin the process right away. So, I was out on Wednesday for my surgery, then had 2 days to get my affairs in order and that was it.
My [specific] job is held for me for 11 weeks. After that, they can keep me in mind for other positions, however would need to fill my position. Short term disability is a total of about 24 weeks; then long term disability kicks in, which is another 24 weeks or so. I’m basically on “Maternity Leave.”
It’s really surreal. This week, I need to read over my materials to put together a schedule based on the template provided for me at Mayo. Thursday, we head down for a personalized physical therapy session to create a program for building my strength. We also meet with the Fibro Clinic to review my program.
I start very slowly. The key is to not “over do” it, and not “under do.” I follow the stretching routine for 20 minutes in the morning and begin taking a 5 minute walk, working up to longer walks as I get stronger. So far, I have the hardest time with the stretches and light exercises that require me to lift my arms at the shoulder, and my legs at the hip. Those are my weakest muscle groups due to the Dermatomyositis. My hips hurt a lot when I do the leg movements since the Fibro seems to fester there.
I then fill in the day with light activities; again, starting very slowly. I chose gardening as one to start. I will also start having different projects each week to fill an “activity” time slot. On that list are things like, photographing and listing new items for my Etsy shop, organizing my craft room, etc. Once that stuff is done, and no longer a “stressor.” I can do things that I love like sewing & photography. I also have a social slot to fill. That can be coffee with a friend, or a phone chat. As I get stronger I might be able to go for a walk, or visit a shop. My activities can expand as I get stronger too. I can do other some of my other loves, like painting and baking.
One thing that is very important on my treatment plan, as well as for my life, is having a Flare Plan. This is sort of like an emergency plan of sorts. I can most likely expect to have flares from time to time for the rest of my life. It’s making sure that I am prepared to handle them, and that I know what to do to make them go away faster. One of the biggest components here is staying positive. This plan will include people to call (since when in pain and scared, I tend to regress), things that make me happy that are restful (a funny movie, or favorite book) and the most mild form of physical treatment (much like what I am beginning with now) to keep my body moving without hurting myself.
Another important aspect of this is surrounding myself with friends who love and understand my new lifestyle. Maybe we had plans for a shopping day, but need to change it to a movie at home due. Knowing that my friends are supportive of my condition and are flexible will help me keep relaxed. The Mayo recommends keeping your plans during a flare to keep your spirits up, just alter them so that you can still enjoy that time and keep your body comfortable.
So that is my homework for the week! I don’t have anything else to worry about other than getting to my appointments on Thursday. It’s a pretty neat set-up, although I am still adjusting.
I fought this for a long time. “Why can’t I work? It’s all I have left,” I thought. After hearing it from doctors, friends and family for almost a year, I finally see that I am never going to beat this until I make myself the priority. I will get back to my normal life sooner if I take time to focus 100% on healing. Take time for me. I deserve it.
It’s weird that when you’re outside of a situation, it’s often so much clearer. Last year, one of my best friends was very ill. Her doctors wanted her to take a medical leave, but she insisted on continuing to work. She would tell me, “It’s all I have left.” I would tell her all the time, “You need to focus on yourself, to get better. Why don’t you take this time to heal?” I never understood why she couldn’t just let go and let herself be taken care of. Until now. Less than a year later, I did the exact same thing. I thought, “This is all I have left of my life.” When really, why did I have to sacrifice everything that I loved for the one thing that only created more stress and frustration? You need balance. Now I see that you should never sacrifice the things that make you happy. If you do, you have nothing left to keep your heart happy which makes healing nearly impossible.
I avoided this for almost a year, but I am thankful that I finally accepted healing. Making myself the priority feels good; I can’t wait to see where we go from here!