Thankfully everything went really well with my surgery on Friday...the hardest thing about the procedure was waking up when it was time to go home. I was just so comfortable and warm that the nurse that kept trying to wake me up really annoyed me. My Dr. was really pleased with the surgery and said everything went great. I guess compared to the two uber-complicated procedures last year, you could tell this was a piece of cake when we were in the car and driving home at 11:30am of the same day!!!!
I slept on and off all day Friday, which really messed up my body clock; I could barely sleep that night. And since my first day/nights have always been the hardest, this also couldn't be any different, even if on a smaller scale. Part of the reason I couldn't sleep is that the nerve on my right callus kept "zinging" me all night long, it was like aftershocks over and over that couldn't allow me to fall asleep.
Slowly but surely!
Day 2 went much better and I fought to stay awake all day. As per doctor's orders, I put on shoes and moved around the house a little bit. He said I could use crutches, but since I have no balance I chose to go with my good friend "The Walker." It was a little strange to walk so quickly post-op but at the same time I'm so relieved things are so much easier this time around. I definitely couldn't deal with 6 weeks in a cast right now. Night 2 went much better than the first and was very restful and today I'm catching up on my emails and all my reading...
I want to share something I just found out about through a great CMT group on Facebook. It was my first time reading The Spoon Theory but it definitely won't be the last. Christine Miserandino describes her "invisible disease" in a way that really connected with me and maybe in a way that I haven't been able to express to others before. So please take a few minutes and read The Spoon Theory HERE.
It's been a while since I wrote on here, but I'm a working woman again so I've been a lot more tired and had a LOT less free time to write. But today is a snow day here again and I am hanging out in the comfort on my home. Thankfully we have been hit with 3 storms over the last couple of weeks and that has gotten me two free days off work and one early dismissal!!! Now, normally I would not be a fan of all this snow, but I can definitely use a day off at home during the week.
And it's also been just absolutely beautiful in town too
I actually have some great foot updates lately too...My right foot has finally turned the corner and has gotten so much better. The first couple of weeks at work were tough with the swelling, having to keep it elevated so much, not being able to move very well and also not being able to rest like I did with my left foot. About 2 weeks ago, I started to ditch the boot and crutches at work (I haven't used them at home in a while but I was being safe in the office) and also started to wear sneakers. This week I started to wear real shoes, pretty new shoes that I've been buying and the swelling is down considerably. It's such a huge relief. I am feeling so much better and stronger. I have even started to cook again and taken out all the "old lady" paraphernalia out of my bathroom.
Next week I'm going back to see Dr. Kessler for our follow up visit. While everything has gotten so much better, the pain in my thighs and my lack of energy have not changed but I am very hopeful that he's gonna have a trick up his sleeve. I'll write more after my visit with him. For now, I'm gonna go make a cup of hot chocolate and sit on the couch under the blankets.
I got some amazing news this week. Someone I know from church, who truthfully I only met once but have worked together on a couple projects, bought me a power chair!!!! I am sooo excited to get it and to try it out. I've cut back on some activities over the past couple of years because they involved a lot of walking but I am so excited to go to a zoo, theme park, or the Big E (huge annual fair in MA) next year.
I am so thankful and grateful for this amazing gesture that was completely unexpected.
My new chair!!!!
PS: Thankfully my foot is healing and has been feeling so much better these last few days. I even drove myself to an appointment yesterday. Today, I pulled out my flip flops and finally ditched the walking boot for a couple of hours and I feel great. I am totally ready for work on Monday, but I am still being cautious and will wear my boot and bring the crutches. I've gone from nervous to excited! I'm ready to go!
Time really goes by so fast...my surgery was exactly 2 months ago today. I have to admit the 2nd month was a lot harder than the first. I miss those good ol' days when I could take the SUPER-meds and my pains were all gone. Since I stopped taking them after the first month, life has been a little more complicated, and at times, A LOT more painful (not my feet, but my thighs). But the funny thing is that even though life can get difficult, it also finds a way to show you joy...
My foot is healing nicely and it feels good. The scars are healing great, except for the one by my ankle (which I pulled the scab before it was ready to come out. I know I know!!! I shouldn't have!), so that is taking a little longer to heal. I am walking with the help of the boot and either with the crutches or the walker (I prefer to be an old lady just at home). After keeping it down for a while, it gets somewhat swollen and I need to ice it.
I try to keep a positive attitude as much as possible, but I have to admit this whole situation got the best of me earlier this week. I was just moody and annoyed that I can't be outside and enjoy this summer. I was annoyed that I still need so much help with things that I could've easily done on my own before, but mostly I was angry about the summer. This is my absolute favorite time of year and now I only get to see it through the window. It's June 16 and I haven't even put on a bikini yet (I know this is so minimal in the scale of things but remember, this was my venting day).
Also, my disability claim got denied...like seriously?? When I told my surgeon, he said it was impossible. I could probably write an entire entry on how the system is so messed up, but for now, I'll just say that I am getting some legal assistance to file an appeal. Hopefully, things will go in my favor.
Thankfully, my mom came to the rescue with my dad on Monday. It was great to have my parents here the entire day. She helped us so much by cleaning the apartment and bringing tons of my favorite foods for our freezer. She and I went through my shoes to clean out my closet and most of it had to go, so my sisters will be the lucky recipients of all my shoes. It turns out my foot is only a half a size bigger, it looks like it's so much more because my right toe isn't straight.
It's also been great to have the World Cup going on right now...it's kept me really busy. I've never watched this many games or been aware of so many teams' stats. Brazil had their first game against North Korea yesterday and it wasn't too impressive but they won. I'm excited to watch the next game in Newark with a bunch of friends and some Brazilian BBQ.
Despite feeling a little down this week, I am grateful for little by little regaining some of my independence. I can now completely shower on my own, I can walk and go up and down the stairs, I can help around the house a little (helping with dishes or making our bed), I carry things back and forth in my trusty tote bag, walking and putting pressure on my foot feels better and better every day. I am completely off pain meds and even though my leg pains are very strong, they're only a little stronger than before and I get used to handling them. I have also been sleeping much better. It's amazing how simple these things are in our lives that we would normally take them for granted,but for me, every little step and every new thing that I can do on my own gives me such a huge sense of accomplishment.
I really miss the normalcy of life, being independent and being a regular member of society, getting in my car and going anywhere I want. But then I remember that I am doing this to have a better life and that eventually I will have all those things back and more! So I try not to think that it has been a long 2 months, but instead, I'm 2 months closer to achieving a healthier and happier life.
PS: I want to dedicate this entry to Tia Ana. She lives in Brazil but somehow figured out a software to translate all my entries to Portuguese and now she's an avid follower of my blog and my progress. Thank you Tia! I love you!!!
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 :)
