Dusting Off Blog in Time for CMT Awareness Month

Hello there! So I am finally dusting off my blog and cleaning the spiderwebs after a 3-month summer hiatus. It's not that I completely forgot about the blog, in fact, I had tons of ideas, but summertime got the best of me and I just never seemed to find the time to put them down on paper, I mean, web.

I am so thrilled that we are celebrating another CMT Awareness Month and I am hoping to do a bit more than I did last year, when I was at my all-time worst. I plan to dedicate another entry to awareness month and do more of an update on this one.

It's been a summer of ups, downs, discovering what works for me and what doesn't. The medication really did help me quite a bit but I finally realized the importance of another piece of my puzzle. The medication alone cannot do it, I need to take the right meds alongside consistent physical therapy. I have never felt more energized or stronger, like I was finally taking charge of my health and not allowing CMT to put me down as it wished. With the help of physical therapy and pool therapy, I finally felt like I had some control over my body.

I started everything slowly and built up my exercises on a weekly basis. Some weeks we didn't get it right and overdid them unintentionally, which would set me back a few days. I started working out my arms too, in hopes that I could make them stronger and get there before CMT got to them. It was empowering for me, as I watched muscles develop in areas of my body where there was only flab before. At the peak of feeling well, we had our wedding reception and I was able to dance the night away, a feat I hadn't been able to do in years. In the midst of feeling so well, I started to sell items on eBay in the hopes of making some extra cash easily from my home. It's been fun and exciting to sell items online and feel like I could contribute financially, however small the help was.

Physical therapy can be a bit annoying to do, almost feels like homework that you wanna skip, and I have gotten to the point that I was honestly looking forward to my appointments. Then, my insurance company butted in and tried making things difficult for me. Since I was feeling so good and my pain level had decreased, they no longer felt it was necessary for me to continue. I had no words !!! I just couldn't believe what I was reading. Didn't they understand I only felt so good because of all the work I was putting in and that soon, I'd go back to normal? I tried getting a new prescription, had several discussions with the insurance company and therapy place and only got an additional 4 visits. In the meantime, my pain escalated again to much higher numbers than in the past few months, I lost the muscle mass I'd built and my energy level dropped. Not to mention that when I went back for those 4 appointments, I was no longer able to do as much or as many repetitions. CMT seems to play a funny trick on your body - it takes you so long to build up and yet, it takes no time at all to lose the time and work you put it.

My therapist has submitted a new request for approval and included a letter from my neurologist. Now I am just anxiously waiting for the results. I know I can do some of the exercises from home, but it's hard to get motivated and stay disciplined during that entire hour, while trying to ignore my cell, the TV, Facebook, eBay....etc. If they do not approve my next request, I am going to look into an out-of-pocket maintenance program because I have finally realized that I MUST keep up my workouts, however light and simple, for my own well-being and to keep the CMT-bugs away.

I have heard from others that this is not so uncommon. The insurance companies will pay to help you get better but not pay to keep you better. Maintenance is not something they want to be responsible for, which can be infuriating for a CMT patient. Since our dear condition does not have a cure or treatment, therapy seems to be the best way to slow the progression. Thankfully, I am fortunate enough that I can afford to do a maintenance program, but what about those who cannot?

New Prescription Cocktail

Ohhh the life of a CMT'er!!! To try over and over again to find a set of medications that may help improve our quality of life, battle constant chronic pain and possibly lift us out of our chronic fatigue. I have searched high and low for different doctors, different types of doctors, new meds and I'm still searching for something that will help me - as I am sure are many people with CMT and other neuropathies.

One of my fellow pool therapy buddies recommended I go see her pain management doctor who helps her a lot and he is located in the next town over so I figured I should give it a shot. I made the appointment for yesterday and the hubs came along with me (it's always good for me to go with someone because I can NEVER remember everything I plan to say or ask).

We arrived for the 12pm appointment and weren't called in to the office until 1:30pm!!!! This is one of my BIGGEST pet peeves. What is the point of scheduling a time if you're going to keep me waiting so long? And, in case you missed it, I am going to see the doc for pain, so to leave me waiting that long is not making my body feel any better. We almost asked for the co-pay back and walked out when they finally called us in. My first impression so far was not good.

Thankfully, the doctor was very nice and helpful. I am only his THIRD CMT patient ever (Shocker!) - I am just glad at least that I wasn't the first! He listened to my entire history and we begun discussing what could possibly work and what approach I should take. At the end of our chat, we have added 4 new meds to my daily routine to start off with - well, 3 new meds and 1 vitamin. Two of the meds are for pain and one is for chronic fatigue, which is honestly the one I'm most excited to try.

I am cautiously optimistic about the possibilities and hope at least one of these will help me find some relief. The plan is to try them out for a month and go back to him for a follow up. I am crossing my fingers that I have good news then...wish me luck!

End of a Chapter

This was a very bittersweet week for me. After months of trying to delay the inevitable and struggling to maintain work/life balance (and by that I mean going to work and getting through the day and coming home to veg out in bed and do absolutely nothing because of exhaustion and pain) I finally gave my resignation notice at work 3 weeks ago. It was certainly not an easy decision to make and I really struggled with letting that part of my life go. As much as we dread going to work sometimes, it keeps us active, in contact with other people, not to mention the financial benefits to be able to live more freely and do things you enjoy like going out to eat and traveling. 

John and I just came to the conclusion that it is just not worth it for me to struggle so much to work, when I have just been so miserable at home and unable to do anything else (i.e. take care of the home, cook, go to church, on and on and on). Thankfully, as if the angels from above knew that this would be my last week, they promptly managed to get me tickets to a live taping of the OPRAH SHOW IN NYC!!!!!! My mom and I attended Oprah's LifeClass at the Radio City Music Hall on Monday and it was a dream come true! Not only did we get to enjoy Oprah, but her main guest was Deepak Chopra and the discussion was about spirituality (cue the angels singing!!!). It was just unbelievable!!! Beyond words..I have been a die-hard fan for years and always dreamed of going to a show. The energy in the auditorium of 5,000+ people was out of this world. So you can say Monday was not a day I gave much thought about my impending major life change.

Tuesday was another extremely exciting day. I've been going back and forth with a friend, who became a professional wedding photographer a couple years ago. Since we got married on New Year's Eve and it was freezing out, we made plans to have a photoshoot in our wedding day outfits when the weather got nicer. Then again, out of nowhere, my friend contacts me that she has heard about this amazing daffodil field nearby that she was just dying to go see and that she'd shoot John and I as a FREEBIE! Say no more...you had me at daffodil field!!!! The only catch is that I had to leave work early so I could get my hair/nails/makeup done...I wasn't going to even attempt to do any of those myself. We went to one of the most glorious places I've seen!!! Out of a storybook...daffodils everywhere, lake, windmill, beautiful fields, barn, well...I mean, a photoholic's DREAM! Here's just a quick preview that she sent me that night that has me DYING to see the rest...needless to say, Tuesday breezed by and I gave no though to last day of work being Thursday.

On Wednesday, it started to hit me a bit, but it really hit me like a wall at night when I decided to write some Thank You cards to some people who have been very kind to me...(cue the waterworks). Poor John came home from doing a double at work to find me sobbing, the reality of it all really hit me...I couldn't even speak. So Thursday at work, I pretty much cried all day. I asked them to do away with the usual goodbyes from the firm - no breakfast needed - or my guests would end up consoling me. I needed to take a few breaks and go hide out in the bathroom but I survived. I received a really nice outpouring of support from people I would have never expected and felt truly appreciated by those I worked with. There's a possibility I may be able to work with them from home in the future, but for now I'm just going to focus on trying to feel better and going back to doing some activities I love.

I certainly don't want people to feel pity for me or "jealous" of the fact I get to stay home. It almost feels like if I had a baby with me, this would have been a much more acceptable decision to make. Since there is no baby yet, I just want to focus on getting stronger...I will be going to physical therapy and pool therapy twice a week, going to look into going back to the nursing home to visit my peeps (I feel more at home there among the canes and wheelchairs), taking dad to see a live taping of America's Got Talent this week, going to the Orchid Show at the New York Botanical Garden next week...sure, I'll be doing some of these things from my wheelchair, but it'll be nice to change the pace of life.

As sad as it is to dwell on the reality of why I needed to stop working, I think I've cried that all out now. I just need to focus on the future and on the reason why I did this to begin with: to have a better quality of life. I'm looking forward to enjoying this time off and hopefully also starting to feel much better physically and emotionally. The end of a chapter, but the beginning of another :)