It's no secret that my life has changed quite a bit over the last couple of years and due to my CMT progression I have been a much more avid user of my wheelchair. The wheelchair is great because it allows me to do so much more, but it has a few drawbacks. It's very tiring for whoever is pushing me around (John got calluses in his hands from pushing me around for an entire weekend when we went to Newport, RI two years ago), I don't feel very "free" in it because I am taken places instead of going where I want or stopping when I want, and I feel like I have no control. Sometimes, in a crowd, my "pusher" may not realize how close they get to people in front of me and that gets me a bit anxious.
I have been wanting a scooter for a while to have the freedom to go at my own pace and to allow John or my dad to enjoy themselves more when we're on an outing. A friend of ours was kind enough to give me a power chair a couple of years ago but it's really bulky and heavy - we need at least 2 people to be able to load it into the car.
I became a member of the MDA a while back and recently heard of their loan closet. While I was away in Brazil visiting my sisters, I emailed my MDA rep asking if they had a scooter in their closet that I could take and luckily they did!!! The process was extremely easy! The supply store got in touch with me once I got back and I just picked it up last week. It's nice, light, fits in my trunk, can be lifted by one person, and it's sassy like its owner - it's a beautiful bright red :)
We were away last Thursday and Friday at a friend's wedding in Massachusetts and we heard of Old Sturbridge Village, which was only 5 minutes away from where we were staying, and what a great tour it would be. It's a living museum located in Sturbridge,
MA, which re-creates life in rural New
England during the 1790's through 1830's. I highly recommend it. And I was super excited to take my scooter for the first ride...I cannot even put into words how happy I am to have it!!!! It was wonderful! I felt so independent being able to steer myself and honestly, it's also a lot cooler than the wheelchair. Somehow it made me feel less "disabled" if that makes any sense...here are some pics of my riding around this beautiful place...
As we are halfway through CMT Awareness Month, I have been thinking about possible topics to write about and realized I haven't touched on a subject that has been part of my life for over a year or so...it may be because I am still in denial, skirting the issue, ignoring, or just not talking about it unless necessary. It's not as if I'm ashamed, but when I think about it, it's a bit of a different reality to accept.
What I am talking about is how much more dependent I have become on using a wheelchair. My ability to walk or stand has gotten so limited that I don't venture out anymore without it. Last year, I purchased a CR-V just so I could have the wheelchair in the trunk of my car at all times. It has become a constant support and major assistance for me whenever I go somewhere that requires any browsing, walking or standing for more than 10 minutes.
While I am more than happy to be pushed around and am very glad that I get to do more than I would if I was on my own two feet, at the same time, I have some strange feelings about it. I try not to focus on the negatives: how young I am, how much more I was able to do not even 5 years ago, how I will manage pushing a stroller on my wheelchair when the time comes, and whether my future/inexistent kid will be embarrassed that his/her mama is on a chair...I know these are silly thoughts but sometimes they do pop into my head. I guess accepting the chair as part of my reality is a bit bittersweet ... when I was younger, this is definitely not how I imagined my 31-year-old self.
I also get annoyed at times with random strangers, all too eager to stare at me to try to figure out what's wrong. I can see their eyes going from head to toe looking for the reason I am bound to my chair and then looking at me a bit perplexed when I stand up to take a picture. I wonder if I am the only young person they've ever seen in that condition.
My dad and John took turns pushing me around in Newport, RI
I am thankful to my husband and my parents for always being more than happy to push me around. No matter how many times we need to get in and out of the car, John calmly assembles and disassembles the chair for me - I could not have asked for a better guy. I am also very grateful for my faith because without it, I may feel that things were unfair and do the "poor me" routine.
I also realize that I am lucky not to need the chair permanently...that I DO get to get up when so many others cannot...I think the process of acceptance is a long one, it doesn't happen overnight. Some days I am perfectly fine and others I am more emotional about it...I guess I just better keep on rolling on and enjoying the opportunity to enjoy this world on two wheels and a cushy seat...
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 :)
Happy Holidays!!!!!!!!! I hope everyone has had a great holiday so far...we had a great Christmas Eve in NJ with my family and Christmas Day in CT with John's family....and in just a matter of 4 days (New Year's Eve), we will become Mr. and Mrs....WOOHOOOOOOOOOO!!!! I cannot wait!!!
In the meantime, I've been taking advantage of the last two weeks of my health insurance through my job to get everything free since I met my deductible in March/April...I'm sure CMT'ers can sympathize! I met with the new neurologist at Yale Medical Center and LOVED him!!!! He is just not a regular doctor, he's our age, he's hip and he knows EVERYTHING about CMT, so how could we not love him??? He talked at length about CMT and I explained my history and at the end of our discussion he thought I should give AFO's a try. I thought that I had averted the subject long enough but since I'm in a race to get "free" stuff with my insurance I scheduled an emergency appointment for last week and will be picking up my braces tomorrow. They will probably look like this picture...
What I find interesting is how God has been placing some people on my way so I can see that I really don't have it all that bad. While waiting to be called in at the orthotic store, I ran into a beautiful little girl who couldn't be more than 5 or 6 years old whose entire left leg was a prosthetic leg. And today while exercising away in physical therapy and feeling exhausted, there was a man in a wheelchair struggling just to be able to lift himself on and off the chair...and those were his exercises...while I was able to walk around doing mine....so really, next to these two scenarios, what do I have to complain about?
Sometimes a reality check is good to give you perspective of your situation and I think I needed just that! Feeling beyond grateful again...
I'm not sure what I did wrong...but I'm in too much pain to walk now. I've been walking great and about a week ahead in progress compared to last time. So John and I have been house hunting since I came back home and we saw 3 houses on Thursday. I didn't think that was a big deal since we had done that before. I came home and my foot was already bothering me so I decided to stay off it the rest of the day.
Then yesterday I stayed off it all day until it was time to go see Harry Potter. Since my friend got herself a baby sitter for the night and drove all the way up from Jersey, I didn't think it would be fair to bail. Well, I should've probably taken my wheelchair. I came back home almost wanting to crawl to my apartment door...that's how much my foot hurt.
So it's really swollen and still very painful today so I'm staying off it the entire weekend. It's kind of a bummer. I've been doing so great and my foot has honestly not hurt like this since the first couple of days post-op. Thankfully I see my surgeon in 3 days and we'll see if anything comes up in the x-rays. Hopefully it's nothing serious!
This has been an amazing week, while also awful at the same time. We traveled to Newport, RI for the 4th of July with two of our favorite couples. It was just a 3-day getaway, where we saw beautiful places, laughed til we cried, and just had a fantastic time. We brought my wheelchair so I could be rolled around the entire time and not take away from our day trips. Thank God for John who pushed me all weekend, even getting calluses on his hands....I don't know what I would do without you. My foot felt great and I was able to walk around a little bit and get up to take pictures.
Unfortunately, as the rest of my body felt great and happy, my legs reminded me CMT doesn't take time off. It was difficult to fall asleep and I tossed and turned in bed all night, waking up in the morning crying. It felt like the pain in my thighs reached new heights, getting ready to test me again. Now that I have been used to my old friends, they've decided to up the ante and see how much more I can take. Thankful for the support, I got in the shower, took a pain med and went out. I wasn't about to let CMT ruin my fun getaway.
Thankfully the super-meds helped me throughout the rest of the weekend, but it left me very thoughtful and honestly, sad. This was such a simple trip where I got wheeled around 99% of the time and my thighs were so painful (on a scale of 1 to 10, I'd say 11), that it made me wonder if I'll be able to take some of my dream vacations. Will I ever be able to go to Italy and walk the cobblestone streets? What about Greece? All these beautiful European countries I want to see with my own eyes, where so much walking is involved. And obviously once you open the can of worms, only worms come out...what about having a family? Will I be able to keep up with a kid?
And if it wasn't for the thinking alone, but the pain has persisted, even after we came home. Sure, the first couple of days I blamed PMS (it normally gets worse with PMS)...but it's Friday and I'm still having trouble sleeping because my body is so uncomfortable. So it's just been a little bit of a sad week for me, not mostly sad because of the thinking, mostly sad because I am hurting and there's nothing I can do about it.
But I am not a sad person, so I am allowing myself these few days that I'm more emotional than usual (thanks to PMS) and just crying my tears and starting to feel better. And today I am back to me again. But I do think I need to adjust my thinking and prepare myself if this new pain decides to stay so I can just accept it and move on with my life.
Even through the bad, I am appreciating the good. This week I am walking with no help, I am just walking. The swelling has gone down a lot and my foot is looking a lot more normal. And I've tested the waters by taking a few steps barefoot on my hardwood floors and guess what? No callus pain on my left foot...which is so strange. I can't even remember the last time I had no pain when I stepped down. Step with the right foot, there are my calluses and they hurt. Step with the left...nothing! I guess this is what people with normal feet feel like all the time. I can't wait to have no callus pain at all.
Yesterday was an absolutely gorgeous day...sunny and in the 80's. I spent some of my day in bed looking out the window at the beautiful day wishing I could go out and enjoy it as if there was nothing keeping me from doing that.
Thankfully, my dad was thinking the same thing. He was so adorable and got out of work early to come home to take me to the park. I was really excited to be able to enjoy the sun a little. However, I didn't realize what a mission it would be to go out. As my mom put it, it felt like they were going out with a baby (aka ME) with all the preparation and stuff needed just for us to go out. My dad went and packed the wheelchair in the trunk, then all my essentials went in my mom's purse (chapstick, phone, camera, wallet and meds), we needed my comfy pillow to support my foot during the car ride, water so I could take my pain meds and the walker so I could get to the stairs.
I am really phobic of stairs so I would never even attempt to go down on crutches. I got myself to the top of the stairs on my walker and then dropped down to go on my butt. Going down wasn't so bad....coming up was another story.
It was really nice going to the park though. I love this time of year when everyone comes out of hiding. It was great to be out and get some fresh air. As my dad pushed me around, it was a little weird to get so many stares. People, have you never seen anybody in a cast before? Geez Louise!!! Even though it was nice to be out, the body tires easily so at the end of the first lap I was ready to come home.
Arriving at home, I brought myself up the stairs by sitting on them again and that's when the exhaustion really hit me. I had to go up slower and take a couple breaks here and there. I felt triumphant when I got to the top of stairs and rewarded myself by throwing my body onto the bed and relaxing for a while.
And today...hello sore muscles!!! It seriously feels like I went to the gym and lifted weights (come to think of it, I did lift my 120 lb. body up the stairs). Everything is sore! Owwww. Even though it hurts I'm proud of myself for being able to do it and I definitely need to keep up my physical therapy and even use the stairs more to build up some strength.
Obviously it was so hard because this was the first time. I'm wondering if I will actually for once in my life have some nice muscles in my arms at the end of this. I know it's too early to tell but one can dream....
WOW time flies...I can't believe it's already been a week since I had surgery. I really prepared myself for the worst and I am so happy that this experience has been much better than my expectations.
Thankfully, only the first day was a nightmare. I haven't had the same awful pain since that first day in recovery. I'm taking the pain meds every 6 hours at home and it's working just fine. The pain never really goes away but it's definitely manageable.
The nurse came over yesterday and all my vitals are back to normal. The physical therapist was also here and I passed with flying colors. She's really impressed with my progress and may not have to come back as many times as she expected. She adjusted the settings on all my equipment, including my wheelchair, which I love. I am able to walk around with the walker, but I'm really looking forward to going out for a spin in my wheelchair to feel some sun on my skin this weekend.
I'm really really happy my mom arrived from Brazil yesterday. I am so grateful that my parents are so loving and caring with my sisters and I. It definitely makes this process so much easier. Now I just have to wait for my follow up appointment - I am really hoping to get to see my foot that day!
After so many years of ignoring this option and fearing it, I have actually gone and done it! And I'm so proud of myself!
After my surgery got re-scheduled I got somewhat disappointed that I'd have to wait longer for this process to start when I am so ready for it...emotionally, joblessly, mentally ... Thankfully it was re-scheduled for only a month later, April 16. I prepared myself the same as last time, went to the hospital for another pre-testing (and found out my blood type...lol, kinda sad that I couldn't remember it at 29), did the yucky nose ointments to avoid infections, took the cat showers. The main difference this time is that my mom was missing. She rushed to Brazil to take advantage of the postponement to see my sisters and see my grandmother who has not been feeling so well. I was really ok with her going but the closer I got to surgery the sadder it became. As much as we hate to say it, at moments like these in our lives, we just want our "mommies" with us. She was able to book a flight home for this Wednesday, April 21 and will be home first thing in the AM on Thursday. I can't wait to see her!!!
Since there would be a few days when I'd be home with just my dad, a dear friend of mine helped me to get a loooooong list of friends from church who so kindly offered to help me while my mom was gone. We even set up a list of who would sleep with me at the hospital so John could come home and get some rest.
This time, I wasn't nervous when I found out the surgery time would be 9am. We'd have to be at the hospital to be prepped at 7:30am. We got up in the morning and I made sure not to do any of the things they told me, no drinking, no eating, no lotions, and had to pee in a cup at the hospital (to make sure I'm not preggers).
John and I made our way into the city and started the admission process at the hospital. The nurse who took my info shared a birthday with me, down to the year. Then I go in the bathroom to pee in the cup but it's so early in the morning and I'm out of it so I start peeing without the cup!!! LMAOOO...no worries! I corrected the problem in time.
I was so excited and ready that I took a little picture of me in my surgical outfit
It was really nice to see that Dr. G (the original doctor) came to the surgery again and actually assisted during the procedure. I met with Dr. F right before and it was a really positive meeting, he was sure he could help me which was really re-assuring. So he signed off on my leg (literally) and I started to walk down the hall with the anesthesiologist very slowly because I was only wearing socks and I can hardly walk on hard floor. My first thought walking into the operating room was: "This is not as nice as Grey's Anatomy!" LMAO...I just didn't know what to expect and had Grey's in mind. I just remember laying down on the table and answering a random question they asked me and thankfully everything went dark.
I woke up hours later in the recovery room, completely unsure of what was going on. Thankfully, John was right there and came to see how I was doing. I think I kept asking him what time it was and if I had really done it. It was really surreal that I had gone through with it for some reason. I spent the next few hours in recovery with John and our friend, Jo, checking in on me quickly because they were only allowed in the room one at a time and for no more than 10 minutes. I couldn't really speak afterwards, my voice was raspy...this was because they intubated me while I was under anesthesia so I could breathe. The great thing is I never felt that discomfort either. I also remember a big tough looking guy, who was placed next to me. He was so big and I remember him crying because of pain and it kind of amazed me that no matter how old or who we are, we are all very similar when placed in situations like these.
I believe they had me on percocet at first, but that wasn't really helping me so they switched my medication to something I'd never heard before. I was finally moved to my room, which wasn't a private room but didn't have anyone else there at the moment. Turns out you can't have anyone sleep with you in a shared room and if you requested a private room, that would cost you $390 a night (more than any hotel room I've ever stayed in so that obviously wasn't an option).
I started to wake up more and my dad also got there, which was so nice, to have my boys with me :)
The pictureholic that I am, I started to take pictures of everything because I really want to document this journey...so throughout the weekend all my visitors, my cast, my favorite nurse, the beautiful flowers I got, all of it has been captured.
The first day was really really tough, pain like I've never felt before. I was on the IV for the first day and that's how I was getting my medication....I'd have to pump it when I felt the need and it would release the pain medicine to my IV bag. Sounds like a great system until you're falling asleep on and off and wake up at 4:30am in severe pain because you haven't been pumping the meds. I desperately called the nurse who calmly came in and said that out of 100% medication I was only receiving 30% - that's why I was in so much pain. She said just to start pumping it and it would start to drip and I could do it every 6 minutes...so not only was I in terrible pain, but tired, at 4:30am and had to remember to pump the meds every 6 minutes...well that only lasted 10 minutes until I started to desperately cry and shake from the pain. Well, that got her attention and she immediately released another dose of the medication. But now I was terrified to fall asleep again and wake up the same way so I stayed up diligently hitting the button every 6 minutes. Well, by 8am the pain caught up with me again and they didn't do anything until I started crying the same way. Thankfully, my wonderful doctor (who never shows up on the weekends but came to see me on Saturday and Sunday) showed up around 10am and was really concerned. Well, let's just say my medication was upped, they took me off the pump and I started getting pills every 2 hours. I was a much happier camper after that. Unfortunately I had one more episode like that on Saturday night but at least this time John and our friend Constancia were with me, so at least they shared the tears with me, held my hand and sat with me through my pain.
It was so hard to sleep that first day with the IV needles in your arm, they don't hurt but your movement is limited, the breathing tube in your nose, they also put a small pump on your other leg that keeps vibrating in a very annoying way every few minutes (this was helpful because it kept you from getting blood clots), the nurses that come in to check your vitals every hour, so there's a lot going on. Oh and there's also the itching...all over. I don't know if it was the sheets, the hospital gowns or the anesthesia, but OMG it was brutal. I took a sleeping pill the 2nd day and slept like a baby but my pressure dropped a lot on the 3rd day because of all the meds so they couldn't give me the sleeping pills anymore but I was able to sleep here and there.
The days in the hospital also start early...they wake you up around 6am to take your wash cloth bath, get dressed, and breakfast comes in around 7-7:30am. This was also the first time I used a bedpan and it's wonderful while you really need the help but it's so uncomfortable because you really feel like you're going to make a mess!
I was busy with visitors: I was really happy to see an old co-worker who I hadn't seen in 5 years, I also met a fellow CMT'er who went through her own surgery struggles just 3 months ago and it was really nice to talk to someone who could totally relate. I also got to see her new pretty foot, even swollen, and how it looked originally because her right foot still has to get operated. It was also so nice to see friends from church, some who I didn't really expect to see. One of them stopped by a restaurant and picked me up some great Brazilian food because I couldn't even look at the hospital food. Friends brought me calling cards and I was able to call my mom and my sisters. I also took pictures with the cell phone and sent it to them to they could feel like they were more there than far away.
I was happy to be released on Monday (April 19) and so excited to come home. That day was much busier in the hospital and the new nurse definitely didn't have the time for me. I was impressed at how good my insurance company has been so far (let's hope it stays that way); I got a bunch of equipment to bring home and I didn't have to pay any co-pay: the walker, crutches, a wheelchair, and the commode (toilet seat with handles on the side that goes above your toilet seat). I was also impressed that my insurance covers at home care...a nurse came over on Monday to check my vitals and on Thursday I have a physical therapist coming over as well as the nurse again. They'll be coming over every week for the next 5 weeks. WOW! So far so good :)
At home, I had wonderful friends spend the day with me, make me great homemade meals, and also some of my girlfriends who visited me and brought me some of my favorite things: Mama Mexico's guacamole (thanks Luzma) and Johnny's cupcakes (thanks Paola & Oscar).
Even with all this amazing food, my appetite has been slow to return, I'm still groggy with the medication, and the pain is never really gone but it's definitely manageable. The worst of it for me is how numb I feel so much of the time which I always did before so I always avoided putting my leg up but now it's constantly that way because of the cast. I'm doing pretty good with the walker but the crutches are definitely a challenge. I didn't have balance before on my 2 feet so finding it one just one has been difficult. But I feel accomplished that I can go to the bathroom on my own, I can dress myself and I am keeping a positive attitude. I think I expected a lot worse and I'm really happy this is better than my expectations. I'm just really happy that I actually did it and now I can't wait to see my new foot.
My follow up appointment is in 2 weeks and I'm guessing I'll get to see my foot then. Through this process, with all the love and attention I've received, I feel a wakening in me. That I need to help more, friends or strangers. It's just so nice (even, if at times overwhelming) to have so many visitors, to get the phone calls, to have people bring me such great homemade food and cakes, etc. When this is done, I need to remember how good it felt to be cared for so that I could pay it forward.
I'm a girl with hopes and dreams who has Charcot-Marie-Tooth (I know! You've never heard of it!). In this blog, I talk about my journey with this invisible disease and 2 reconstructive foot surgeries (and a 3rd minor surgery) I've gone through in the last 18 months. And I try to do it all with a positive attitude and a smile on my face :)
I became a member of the MDA a while back and recently heard of their loan closet. While I was away in Brazil visiting my sisters, I emailed my MDA rep asking if they had a scooter in their closet that I could take and luckily they did!!! The process was extremely easy! The supply store got in touch with me once I got back and I just picked it up last week. It's nice, light, fits in my trunk, can be lifted by one person, and it's sassy like its owner - it's a beautiful bright red :)
