Time flies...I can't believe it has already been 2 weeks since my surgery. Since I've been home, I've only been outside once, last Saturday when it was nice and sunny out. But it was such a hassle to get me and the wheelchair outside that I haven't really bothered to go back. I guess the fact that I am a homebody comes in really handy right now...I definitely don't have cabin fever yet, I'm actually still enjoying myself (knock on wood this lasts). I'm staying in my parents' room where I get to see the backyard, an apple tree (and the blue bird that visits it everyday), and most importantly, sunlight. This may be a huge reason as to why I don't feel so caged in.
It's also been pretty busy for me that I haven't really looked at the pile of gossip magazines in the corner, or read my books, or watched the DVD's I made sure to have, or listen to the CD's many friends have given me. Most of my time consists of emailing or talking on the phone with my sisters in Brazil (which happens to be very entertaining) or hanging out, emailing and talking to friends and family who come to visit me. The house is constantly decorated with beautiful flowers I've received, which I am so grateful for.
There are definitely a few things that I have had to get used to, like sleeping on my back, which I have never been able to do until now, or what a process showering has become (I can't just walk in and do it on my own). I also need to get used to keeping my foot up at all times...before the surgery, I would never do that because I would always feel numbness on my left foot and that is something that is still bothering me a lot now. At least before I could try stretching my foot or my toes, now I can only adjust the pillows I rest my foot on or let my foot drop for a couple of minutes.
The itching all over my body that I started to feel in the hospital is still bothering me. So much so that my mom started to give me water with vinegar and sugar (an old recipe from when she was a kid) to help and I've started to feel better. Right now, the thing that is definitely the most uncomfortable (TMI ALERT) is just how hard it is to regulate my stomach. The medication I am on is so strong that it "blocks" me so I have to take Milk of Magnesia and eat lots of fiber to "release" me...anyway, making a long story short, it's just hard to find a balance.
The nurse and physical therapist were back this week and I was assigned my first set of homework that I need to do twice a day. While the therapy seems pretty simple, it's crazy how tired I can get from so little exercise.Thankfully, the pain is still under control with taking the meds every 6 hours. I have felt some annoying tingling sensation on the back of my foot, the part that rests on the pillow.
I am truly fortunate to have my parents who help me so much and are doing everything for me. I don't even know how I would be able to go through with this process without their help. As thankful as I am, I also miss my home and most importantly, I miss being with John. We dated long distance for 4 years before we moved in and now we're kind of back to that again. I know it's only temporary but I just wish CT and NJ were closer.
I am really curious to know what kind of pain other CMT patients struggle with. Recently I have been connecting with a couple of women my age who also have CMT and they don't exactly feel the same pain I do.
My surgeon thinks the pain I feel on my thighs is not typical of CMT cases, which is why he tried to help me with the steroid injection. Interestingly, my youngest sister was diagnosed with this disease about a year and a half ago and she feels the same pain/pressure on her thighs.
If you read this entry, please let me know how CMT affects you. I would really like to see if anyone else shares this thigh pain, and if so, have you tried anything that helped with your pain?
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 am happy to announce my surgery has been re-scheduled to April 16.
It has been 4 weeks since I had the injection at the hospital and 3 1/2 weeks since the "new" pain started on my thigh. Thankfully the neurologist was right and I'm feeling like myself again.
I started to feel a little better about 2 weeks ago and that was just being able to walk without the cane. So last Tuesday I checked out of Hotel "Parents" and came home. At first, it looked like I wouldn't be able to have my surgery until the last week of April, which I was really bummed about. My mom needed to go to Brazil to take care of some things so she took advantage of the break and left that Thursday night. My sisters are obviously pretty happy about that!
My first days back home were not easy because I think the long car ride didn't help but it steadily got better. I was finally able to drive again on about a week ago, I cleaned the tub this week (not that I'm so thrilled about that! LOL), and I've started to cook again (slowly but surely!).
Now that my mom is in Brazil, I find it really nice how many people are checking up on me to see how I'm doing and how many adoptive mothers I've got. During difficult times in your life, you can really figure out the people who truly care about you. I feel very loved and well cared for.
I will be going back to the hospital this Monday to do all my pre-op testing again. Yay!!! Surgery is already next week....I can't wait!
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 :)
