Ontem foi Dia das Mães e eu parei pra pensar e refletir o quanto eu sou grata a minha mãe.
Minha mãe que tem sorrido comigo, chorado comigo, sentido a minha dor, feito de tudo para aliviar o meu cansaço, facilitado a minha vida, me dado conselhos e escutado minhas decisões. Minha mãe que se doa incondicionalmente, que não mede seu cansaço para me ajudar, que dirige e vence os seus medos para me visitar.
Mainha – sem você, eu não sei o que seria de mim. Como eu fui tão sortuda na loteria da vida que você me escolheu lá em cima, que você aceitou dividir o meu fardo. Você soube que a nossa jornada seria difícil e você simplesmente falou que sim.
Muitos não sabem o que é o apoio de uma mãe, de um carinho, de uma sopinha na cama em um dia que não se sintam bem.
Você é uma super-mãe, tem o coração partido em três pedaços, um aqui e dois no Brasil. Nós fizemos algo de certo para te merecer.
E agora que eu já tenho 29 anos, preciso de ti como naqueles primeiros anos da minha vida: não posso tomar banho sem você, comer sem sua comidinha que me traz na cama, escovar meus dentes sem sua ajuda, me vestir e até mesmo os meus passos. O que faria sem você? Essa pode ser a minha jornada, minha necessitade de resgatar meus erros passados, mas com certeza, você caminha comigo. Se pudesse, eu sei que tomaria meu lugar.
Mais saiba, que você fez tudo certo. Você me criou para ser uma mulher forte, uma mulher que acredita em Deus e tem fé e certeza que ele sabe o que faz. Você me apresentou a doutrina que eu amo, me mostrou resignação, me ensinou a não reclamar diante as dificuldades da vida. Você me preparou para os dias de hoje.
Deus é muito bom. Ele sabia que eu precisaria aprender, mais ele não me deixou sozinha. Ele me confiou à uma mãe que me amaria e que cuidaria de mim, me deu um pai tão bom, irmãs que caminham comigo e um companheiro que me ama.
Quando eu vencer esse capítulo e virar essa página da minha vida, o crédito será NOSSO. Mainha, muito obrigado por tudo!! Eu te amo muito!
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Mãe - é palavra que exprime com perfeição o que a natureza tem de mais sublime.
É o exercício permanente do amor.
Mãe, o céu sem confins revela-me teu amor...
A vastidão do mar fala-me da tua bondade...
As altas montanhas refletem teu heroísmo...
A profundeza dos vales espelha tua humildade...
A beleza das flores traduz teu caminho...
Tudo isso encerras dentro de teu grande coração...
E silenciosa, serena, sorrindo, continuas labutando no cotidiano da vida.
Obrigado, Mãe!
So much has happened since my last entry, I started writing this one a few times but quite honestly wasn't really inspired so I just waited to write it. And what do you know? It's 4am and I can't sleep so I thought I'd catch up ...
I was really looking forward to finally getting to meet my new foot as I was going to see my doctor for my follow up. John and my mom drove me into NYC for the appointment. I was really excited for this, a moment 5 years in the making. I could tell my doctor was really busy so he got right to work by taking off the first cast, which was a little scary. I know he is a great doctor and this was a minor thing to him, but when you see that little saw cutting so close to your leg it's a little nerve-wrecking. I honestly didn't know what to expect...wasn't sure how I would react. At first, it looked a little gross because the first thing I saw were the stitches and the blood on the cotton. And the more he peeled off, the more my absolutely gorgeous foot peeked out to say "Hello" to me. I was speechless (if you know me, you know those moments are hard to come by). And then a wave of emotions started to run through me...of happiness, of accomplishment, and a little weird because the foot was so beautiful and as a person who never had a beautiful foot, I felt like they attached someone else's foot onto my body. The arch was almost non-existent, my toes were perfect straight, and my foot was so long!!! I was a size 6.5 in high school and through the years, my foot has shrunken down to a size 5.5 - 5. My new foot is definitely at least one shoe size bigger!
DISCLAIMER: I'm going to post the pictures here and I hope they don't upset anyone. As the title of this blog reads, this is my journey and I've been waiting for these "after" pictures for a long time!
First, a recap...this is the picture of my old foot:
And this is my new beautiful foot ... despite all the bruising, swelling and my new cool scar:
I was so happy and overcome with emotions that I cried. Cried because a wave of memories washed over me, back to 2004 when I started my diagnosis process, searching for answers. Back to 2005 when the first doctor suggested surgery and I balked at the thought. I thought of all the pain that I've had with my calluses, of all the difficult shoe shopping trips I would force myself to go on to try to find a decent pair of shoes to wear to work, to a nice event, or just to be comfortable. Happy that this is a new beginning for me and that even though we are only at the start, this proved to me that I made the right decision.
My doctor was extremely pleased with what he saw, he said he couldn't have done anything better or different than what he did. That the foot is healing beautifully, that the swelling is very normal for where we are. He actually seemed to admire his work of art a couple of times. I didn't mind at all because that work of art happens to be attached to my body :) He also told me he thinks I am very brave, that when he met me he didn't think I would be doing as well as I am...something John has also said to me. I know there's a light insult in there somewhere lol...but I choose to see the compliment and that made me very happy.
I got a new cast and will be in it for another 4 weeks. I return to the doctor's office on June 1 when they will remove that and put me in a boot and hopefully I will be able to start putting some weight on my foot. We were so excited that we went out to eat to celebrate.
The good and the beautiful came together....the bad came when the doctor said I need to start weaning off the pain medication. Instead of a full pill every 6 hours, I should do half a pill and then eventually down to a quarter. That worked out well Tuesday and Wednesday but on Thursday night, not so much. The fact I had visitors all day may have contributed to the fact I was in so much pain at the end of the night, which led to a few more tears. So I took a full pill at night and another in the morning, and then back to a half pill and so far it's been ok. The bad is also that this medication is so strong that it had been suppressing my usual leg pains and with its decrease, my old friends have come back in full force so it's hard to find a position to be comfortable in. I plan on calling the doctor's office tomorrow to see if there's any medication I can substitute it with that may have the same positive effect on my body.
Even with the bad, I am ecstatic and cannot wait til June 1 to get to see my new footsie again :)
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....
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 was thankfully very calm as the surgery got closer. The only time I got somewhat nervous and I think it really hit me is when I spoke to the hospital and got my surgery time. I needed to be admitted by 9:30am and the operation was scheduled for 11am. Oh boy! It was really gonna happen. But that was the only moment of nervousness.
I even woke up the next day (March 17) not sure why my alarm went off so early...LMAOOO. We got up, I made sure to put away all my bottles of water and my lotions in preparation and to avoid the temptation. I took my cat shower (yuck...you shower with anti-bacterial soap and then they give you these wet cloths to "dry" yourself with but they make your body sticky so I felt like I just licked myself like a cat! LOL). My mom, John and I were so calm it felt like it was going to happen to somebody else. I think all the prayers and positive energy from family and friends helped sooo very much!
We got to the hospital early and started the process. I put on my surgical outfit and just waited to see Dr. F as promised because he knew I was in a lot of pain and he wanted to see me before we went in to try to figure it out. While we waited, we people watched.
Dr. F finally stopped by to see me and he was accompanied by Dr. G (surgeon who is retiring me and kinda "dumped" me)!!!!! I was so happy to see him there. He came to watch my surgery like he said he would. I thought that was really nice. Well, Dr. F was really really concerned about this new pain, he was worried that the pain would get much worse after surgery and then he would just feel guilty for putting me in that situation. He preferred calling it off since it's an elective procedure and doing it any other time, but trying to figure out what it is right now. He said the first step would be to take an MRI to see if it would be a spine problem, then to see the neurologist, Dr. K (I had already met him 5 years ago when I was first getting diagnosed).
I can't say that I was not disappointed. I was actually really disappointed because I am sooo ready to start this process and it was also a little frustrating because I was just at the hospital on Monday and we could have done all of that then. But I was glad to see he was being cautious and worried about my condition so I had to be happy about that.
Soo then starts our tour through the hospital lol....we saw so many people and went to so many floors. First, I had to get discharged, then we went to the MRI where I was told there would be a really long wait..as long as we were already there, I didn't want to leave and have to drive back into the city. Thankfully I didn't have to wait long because the lady in front of me gave up after 5 minutes because she panicked. I had never done an MRI before so I had no expectations, I was okay because I thought I could just go to sleep and it was supposed to be 45 minutes. Little did I know, they ask you NOT to sleep while you're in there because sometimes your body twitches involuntarily in your sleep and the technician told me I had to be in there for an hour and a half!!!!!! Holy kakamoley!!!!! The machine I was in was sooo tight that I started having a panic attack, it felt like I was being buried alive, I tried closing my eyes and taking deeper breaths and it wasn't working. So I decided to pray...pray to every guardian angel and saint I could think of...just ask for them to calm me down so I could go through with the test. And since I so strongly believe in the power of prayer, what do you know??? Not even 2 minutes later, I could feel myself calming down. At one point, my body jerked a little because I was falling asleep and I started praying all over again for them to calm me down but not that much! LOL that I still needed to stay awake so I started singing songs in my head. The most uncomfortable thing is that my right leg and foot started going numb which is very painful for me. My foot felt like a rock and started to twitch a bit, which was out of my control (I didn't take my meds that day because of the surgery). Thankfully I MADE IT! The whole hour and a half!!! I was actually really proud of myself...
Then we headed to the neurologist's office. Again they were fitting me in as an emergency so we waited a bit and then he came in. He was sooo good!!! He knew exactly what to do and what do you know??? All this pain I'm feeling IS a result of the injection I did last week. Not because of the steroids but because the nerve where they applied the injection is irritated. He touched the place on my hip and I immediately felt the exact same pain on my thigh. He's confident this is not a lasting problem and I should be okay within the week. He didn't give me any medicine to take but told me to put the lidocaine patch on it and it should get better. He thinks we should hold off on the surgery for about a week and I should be better by then. Thank GOD! Our last stop was to do a blood test to check to make sure the Vitamin B level in my blood is within a good limit otherwise it could impact how I feel in a negative way.
Today I called my surgeon's office and he's out of town at a conference and will be back on Monday. I guess I'll know more then. The pain is teensy tiny bit better today, it's been a little easier to walk and to stand up. John and I went and sat on Boulevard East because it was such a beautiful day and I just wanted to feel some sun on my skin.
Sometimes life has other plans for us and we have to roll with the punches. I've never been great with a change of plans but I've been so relaxed that I really feel okay about this one. I know it will happen when the time is right.
I am so glad that I celebrated my birthday in a big way because after going to the hospital last Monday, I've pretty much been feeling crappy ever since.
I stayed at my parents' in NJ after the injection because I was not supposed to drive for 24 hours. I drove home on Tuesday but ended up spending most of the day on the couch feeling dizzy, feverish and having chills. I woke up feeling a little better on Wednesday and got worse as the day went on. I called on a friend and asked for a ride to church so I could at least go to the study group, hoping to feel better. I'm so glad that I did because I had a wonderful experience there and received some great support and comforting words from friends. Thursday I felt a little better so I went shopping for last minute items I wanted to bring to the hospital with me - nightgowns and comfy sweats.
But Thursday night, I felt this extremely sharp pain on the side of my left thigh. I didn't think much of it until Friday morning when I woke up and that pain was worse. It started to be very difficult to sit down and to get up and even to walk without limping. I called the hospital and spoke with the doctor who did the procedure on Monday and when I explained the situation he did not think it was related to the injection. I called my surgeon's office and the best they could do is recommend I take Tylenol extra strength. I have such a wonderful mom that she decided to drive up from Jersey and check up on me to make sure I was ok. We also had a couple of friends stop by to see how I was doing.
Unfortunately, Saturday the pain was even worse and I officially spent most of my day on the couch, only getting up when it was absolutely necessary. This really was starting to worry me because this pain is completely unlike my usual pains and I was just starting to hope for life to be "nice and easy" with my old friends - all my pains that I'm already used to and know what to expect. Sunday was not any better and my mom offered to come pick me up so I could stay at their place in case I needed to go to the hospital on Monday. I accepted immediately because it was definitely not getting any better and I knew I would have to try to do something about it and I was hoping to at least try to figure it out before my surgery on Wednesday.
It was a little sad to leave earlier than expected because the plan was to drive down on Tuesday after John got home from work. It was a little sad to be leaving my new home after just a short month to be gone for a few weeks. But it was also good to know that my mom would be able to help me a lot more and that I would be able to go into the city on Monday either to see my surgeon or go straight to the hospital.
Arriving in Jersey, I already feel like I'm at Hotel Brandao! LOL. My parents are the best and are seriously doing so much for me. Their love and care will seriously make this process so much easier on me. I'm grateful that despite our problems and concerns, we can still laugh and have fun. My mom and I couldn't sleep so we talked and laughed about Milena and the atleta for hours. Or my dad made fun of me being such a viejita because I'm walking with a cane. Or my new toilet seat (Thanks Em!) that will be parked next to my bed. Laughter therapy is so powerful.
First thing I did when I got up this morning was call my doctor's office but he was at the hospital in surgeries all day. His nurse said it would be best to go straight there since that's where I had the procedure done and if I needed any x-rays or an MRI it would be much easier to do and she said if they needed to keep me there I could just stay til Wednesday. Oh lordy! Thank goodness my hospital bag was almost all packed. So I had to prepare myself to possibly be admitted today...first order of business, shaving and fixing my eyebrows lol.
Unfortunately this hospital visit wasn't very helpful. To make a long story short, a very young resident told me straight off the bat he didn't know what I had. Well...if the doctors don't know what I have, then who will? And whatever happened to let's talk to me more to try to figure out what it is? He looked so young that my mom guessed he was 25 and I thought 28...well, she was right! I have no shame so I actually asked him! LOL.
I did more x-rays of my hips and thighs, told my story to at least 5 different people and at the end no one knew what to do with me. They didn't even recommend any medication I could take (not that I could take many since I am still planning to be operated on Wednesday). Finally, they called down to my surgeon and he realizes that the injection obviously did not work. He doesn't think that it's so much of an emergency that we should cancel on Wednesday so he said he will look at the x-rays and come see me before the operation to examine my legs.
It's really frustrating to have the people who are the experts not know what's wrong with you and not be able to help you but this is not the first time I've dealt with this. I guess ever since the beginning, the doctors have always been a little lost...it took so long just to diagnose me. I'm glad that at least I tried and went into the hospital. Normally, I would've just stayed home and now Dr. F knows he needs to come see me before the surgery.
My mom thinks I don't look like I'm in pain enough so they probably don't think it's a big deal. LOL. Actually I've heard that a few times in the past couple of weeks. I don't know how else to be. I am someone who lives with constant pain...can you imagine how miserable my life would be if I let that pain win and show on my face all the time? I'm not always happy-go-lucky but I try as much as I can. There are days when the pain is at a 10 and there's no way I can hide it but thankfully that's not everyday. The more I fill my life with love, laughter and a positive attitude, it's like an adrenaline kicks in and I can forget it's there. I've been dealing with it for so long that you kind of have to develop a mechanism to not let it control how you live. I think one of the hardest parts of my day is getting up in the morning because it's when the pain is strongest. If I can get out of bed, then I can make it through my day.
But without a doubt, the biggest contributor to how I react to how I feel is my faith in God. I am thankful for my belief system, for knowing in my heart that everything happens for a reson. God wouldn't let us suffer in vain and so there must be a reason why I'm going through this. It does not matter if I do not fully know the reasons right now, I just know that He is just and fair. I believe in karma and how we must redeem ourselves for our past behaviors, whether in this life or another. I am grateful for the opportunity that I have to do that in this life. And he gave me such a great support system to go through this process.
I am surrounded by such positive energy and I have received such positive feedback, so many phone calls, emails and messages, especially since I decided to send this blog to more friends. I know I am going in on Wednesday but I can only imagine the chain of positive energy and prayers I will have on my side that day. It's during difficult times that people really come together and offer their love and support. I thank each and every one of you who has offered me a kind word and your help in any way.
At the end of the day, I think I'm a lucky girl. Sure, the journey I am on may not be the easiest but the people around me sure know how to lighten my load.
.... I think this is my last entry pre-operation. Wish me luck and please say a little prayer for me. See you on the other side!
Today was my first official visit to the Hospital for Joint Diseases to get injections into my hips (to see if that will help the pain in my thighs) and also to do all my operation registration and pre-testing. I'm so glad that my parents came with me, just because we really weren't sure what kind of reaction I would have to the injection and also to support me =)
I really didn't know what to expect of both procedures and I have to admit I was a little worried about the injections because like most people, I don't love needles. The hospital staff was extremely nice and helpful and made me feel at ease right away. I changed out of my regular human clothes and into a hospital gown and I even got a hospital bracelet...Thankfully they gave me two gowns so I didn't have my backside exposed to the world.
First, I talked to the nurses about basic information and then the doctor came in to explain the actual procedure. They were going to numb me with lidocaine and mark the spot to be injected. Then they would hook me up to this machine so they could see what was going on inside in real time. COOL! Before they applied the medication, which I found out today was actually steroids, they release a dye into the area to make sure they were in the right joint. All of this happened in less than 10 minutes and was actually only a little uncomfortable, mostly when they were applying the shot for numbing.
There was another medicine mixed in with the steroid that would work in the first 5-6 hours and the steroids won't kick in for 2 days. The effects can last from a few weeks to possibly a couple months. If this works, I can only repeat this procedure 4 times a year because the steroids can have a negative effect on your bones and ostheoporosis is a major side effect. I say "if this works" because this is really trial and error. We don't know this will work for sure because the doctor isn't sure my thigh pain is related to my hips but we are trying. I am feeling positive that even if this doesn't work out, at least now we are exploring areas I have never explored before and I'm hoping one of them will be the right one. I need to keep track of my pain levels over the next week so I can talk to the surgeon about it and see if there's been any improvement or no change.
When we were all done, I headed down to Admissions and started to sign my life away...so many forms. And they asked me if I have a DNR (Do Not Resuscitate Form) and a will...kind of weird to think about these things at 29. I guess watching television does pay off sometimes because I knew what the DNR was from Grey's Anatomy...LOL...and yes! Please resuscitate me!
When I was done with all the forms, we headed upstairs for all the pre-testing. I cannot stress how nice the nurses were...I was really impressed. I continued to go on and basically tell them my entire life story because they asked me 1,000 questions, my blood pressure is great, I found out I lost some weight, did a blood test, EKG (results were good) and I found out more serious information about next week's procedure. Some of these were the most interesting to me:
I will not find out what time the surgery is on until Tuesday night
I cannot eat anything past midnight on Tuesday (regardless what time my surgery is...here's praying that it's earlier in the day. I asked what if it's later in the afternoon. Answer: Sorry but you will have to suck it up). If I'm dying of thirst I can take a teensy tiny little sip
I won't know how many days I'll be there until we do it...we have to play it by ear
I can continue to take my Lyrica/Vitamin B
I will have to buy some medicine for my nose to be used everyday 5 days prior to surgery to help against infections
I will have to shower the night before and morning of with Dial anti-bacterial soap and not dry myself with a towel. They gave me special patient pre-op cloths that are supposed to help sterilize my skin
I gave them authorization to give me a blood transfusion if I needed one
When I was finished with the nurses I met with the anesthesiologist to go over yet more questions. Thankfully they accept my health insurance so one less concern. The doctor was really nice and she said if I didn't want to, they could just numb me from the knee down...I said: ARE YOU CRAZY?? Knock me out, I don't wanna hear, see, or smell anything! LOL...she said that's fine too...I just wanna wake up and be in my room already.
I am really happy that we were able to do everything in one day. Now I just need to wait until next Tuesday to find out the final details.
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On a side note, John is getting me one of these leg elevator pillows that should be really helpful once I have the cast on and to be more comfortable. I'm thinking maybe I should also get a back pillow...we'll see.
My birthday was 2 days ago...March 3. Growing up, I was annoyingly excited about my birthday every year...I'd start the countdown at New Year's and announce it to the family every day (LOL - imagine growing up with that girl!). As we get older, I still love my birthday but I definitely don't fuss as much or plan huge things.
This year, I wanted to see all my friends and really enjoy myself while I could still walk places on my own 2 feet. My mom says I'm acting as if I'm gonna die but that's not it. I just wanted to have fun without it being a burden, without having to worry about a huge boot, crutches, etc. and get to see all the people I really care about because I'm gonna be out of commission for a little while.
So event #1 was a birthday in Jersey with friends at Las Palmas Restaurant. It was such a fun fun night filled with laughter, catching up with everyone and just having a good ol' time. I saw some friends I hadn't seen in a while and some who I just went away with. Like Laura's beautiful card said, I may not see or talk to you all the time, but you are still one of my closest friends. And that's how I feel about all the people that came out.
On the actual day of my birthday, John said we had to leave the house exactly at 11:40am and he was blindfolding me! How super duper exciting! First, because I've never been blindfolded and second because I love surprises. I thought he might take me to the spa but he drove in circles and completely confused me...but finally we pulled up at the spa!!!!!!! He got me a 60 minute facial and 90 minute swedish/hot stone massage. Oh how I love him!!! And he also took the day off, which I didn't know about. As I got treated like a princess, I really thanked God for all my blessings and for this special week in my life. Later, John took me to eat my favorite: crab legs, crab cakes, and a virgin strawberry daiquiri.
He doesn't usually spoil me like this...but given the circumstances, he wanted me to have a great memorable and relaxing birthday so I can look back on this in a few weeks time and remember how happy I was.
Since I didn't know he would be off work, I had already said I would be going to my church study group. On my way to therapy (one needs to heal the body and soul), I called my parents' house and got no answer. I had a great session and left to go to church. On my way to church I called their house again and no answer. Then finally a light bulb went off in my head. THEY'RE COMING TO CT FOR MY BIRTHDAY!!!!!!!!!! OMG!!!!!! When I turned the corner on the right street, I saw my mom's car and her NJ plates! I got so excited that I dropped my phone under my car. GREAT! And to my surprise, my friends from church also planned a little birthday party for me there.
Today, we also got to have dinner with John's family for my birthday and it was just such a great time. And tomorrow, we are having our game night/potluck birthday dinner with many dear friends here in CT...this has been an incredibly awesome birthday!
Not to mention all the loving text messages, emails, phone calls, facebook/orkut (this is Brazilian facebook) posts...
It's funny how things that happen in your life that would make you think they are a negative can make you feel the complete opposite way. I feel SO SO loved by so many special people and I really feel their support and prayers. And I KNOW how many people are pulling for me. So when I think about it, I can only be grateful to God for giving me the strength to go through with this and for giving me all the tools in life to prepare for such a moment and not question "Why me?" I know exactly why me...it's a lesson I am here to learn and He was so kind to send me all these beautiful and amazing people to help me through this journey.
Today I need to start doing some minor things so I can be ready for surgery. I spoke to the nurse at Dr. F's office and I need to stop taking some of my medications. I have to completely stop taking Vitamin C (I take 1500 mg a day because there's been some initial research about the positive effects of Vitamin C on CMT patients), my birth control pills (YIKES!), and pain relievers.
All of these contribute to thinning your blood so I need to stop them immediately so that won't be a problem as we get closer.
Next up...my pre-op testing and lidocaine injection on March 8!
I was waiting for a date to finally write this entry...March 17. But so much happened while I waited that now I have lots more to write about.
When I was diagnosed with CMT in 2005, I was immediately referred to Dr. G, a doctor with the Hospital for Joint Diseases. At the time, I didn't like him because he had a one-track mind: SURGERY! Back then, I was certainly not ready. I wasn't even expecting to hear I had a genetic neurological condition, let alone talk about getting surgery! So I pushed the thought to the back of my mind. Over the last couple of years, my pain has certainly increased exponentially and more and more I had to think of that option that I pushed to the back of my mind.
Things in life happen for a reason because I was definitely not thinking surgery in 2009. But it's when I moved to Stamford, CT with John and commuted to/from work in NJ a couple times a week and my pain definitely hit a peak. So over the summer, I started to think that I definitely wouldn't be able to commute for too much longer and I started looking at jobs in CT. This also happens to be one of the worst economic times our country is going through so it was slim pickings and even then, hard to get a call back or interviews.
Sooo brilliant mind that I am, I started thinking that if I was going to be either unemployed or settling for a job that I would be bored with, I might as well consider the thing I've been avoiding all these years! There are many reasons to avoid this surgery, which is why I have done it for so long: it's going to take a huge chunk of time to recover so I obviously couldn't do it while employed, painful, scary, very complicated procedure, what if it's worse after??
I started doing some research on doctors and called Dr. G again, not because I loved the guy but because I knew he was good. I also scheduled a few other appointments with different doctors. My first appointment was with a doctor who will remain nameless in NJ, who just does not have the experience with CMT or this type of procedure. When we met with him, he told me that it would be an extremely complicated surgery and he wasn't sure if I wasn't beyond repair. OMG I went home and cried that night and the next day...thinking that I waited all these years and maybe I waited too long and lost my opportunity. I've always thought of this as a last resort and now what would I do?
Thankfully my appointment with Dr. G was after this and he was extremely confident about the procedure. He has dealt with TONS of CMT patients before and done several surgeries similar to this one. Not only was I sure he was the man for the job, but I actually liked him now. I guess now he and I were both on the same page. He gave me the name of one his patients who I could contact and talk to about her experience (Thanks Tecile for this tip!). At this meeting sometime in November 2009, we took new x-rays which showed the progression of the problem. There's a new problem with my right ankle I wasn't even aware about. Dr. G. warned me that there are so many things that need to get fixed that he wouldn't be able to fix it all at once with one surgery because it would be too stressful on my foot and that I may need to go back in a couple of years from now to finish it. To sum it up, the problems are: extremely high arches, hammer toes, foot drop, foot turning inwards, problem with right ankle and other issues with nerves and muscles that are medical terms I can't remember LOL. Seriously I am keeping track of plenty!
So I scheduled a follow up with Dr. G for January 12 after he got back from his vacation for a final consultation and set up the surgery date and I also planned to meet with his patient that morning. It was great to meet with her and see how "cute" her foot is now...sorry, but when you live with ugly feet your whole life, it's kind of exciting to get new cute ones (and it's also better to focus on this stuff than on the stuff I'll talk about in a second). It was extremely helpful to meet with her to know what to expect pre/post-op and to hear about her recovery. I definitely found out some things that I definitely wasn't expecting...
- How I won't be able to shower or go to the bathroom while I'm in the hospital and possibly my first week at home. YUCK! I already feel bad for my mom who will be taking care of me...
- How hairy my leg will be when we take the cast off
- How painful the recovery process will be
- The length of time in recovery which is not set in stone for any patient
- Great! I really should've written this in January because now it's almost a month later and I can't remember all the things she told me...oh well...I'm sure it'll come back to me at some point.
After meeting with her, I headed downtown to meet with Dr. G. Since he was just recently back from vacation, he said he couldn't give me a date yet and would get back to me the following week. He also gave me some interesting pointers. He said I should not pity myself and that I need to actively work in my recovery. That the more of a fighter I am and the more I push myself (as advised by my physical therapists), the quicker my recovery can be. This was great to hear because 1. I don't pity myself, even though I'm sure I'll have my moments and 2. I had not even thought of being "active" in my recovery and how important that will be for me. The one thing he said that stayed with me (how could it not?) is that this will be really painful, to the point that I will probably come to regret having the surgery. Thanks!!! At least I am going in ready for the worst!
Unfortunately, when he called me the following week, it was to tell me he has made a very important decision in his career...that he will be retiring from surgery. That he will continue to work but will definitely be scaling down his responsibilities. That he will be happy to stand in the surgery room with whomever I choose, but he will not be the main surgeon. That if I was only having 1, he would be more than happy to make an exception but since I would be having 2 surgeries now and possibly more in the future, he thought I would be better off with someone who would follow my case from beginning to end....which I agree. I was just really disappointed that he waited so long to tell me. I had already finished all my research and chosen him and I had just been at his office the week before and he "forgot" to mention this very important fact. But he said he felt really bad and he would make some calls to doctors he trusted and discuss my case.
I obviously worried and stressed but thankfully we were leaving on a vacation to Mexico in 3 days so I decided I would just deal with it once I got back and put it off my mind. We had an amazing time on our vacation but I definitely had some reminders of why I'm so ready to have this done. Like how difficult it was to get out of the beach because there were so many sea shells in the sand that I needed help, or how I have to walk to the edge of the pool in my flip flops and immediately put them on once I get out because I can't stand on the ground, or even how hard it was to just stand in the pool floor, or how exhausted I was from dancing two nights in a row that I had to stay in the room and rest for a few hours before enjoying the day...many little things that people take for granted. But I will be so grateful when these things are no longer obstacles to overcome. Sometimes we have to go through situations to make us appreciate them. Maybe I wouldn't have valued these things had I been given them naturally, maybe I needed an extra push to realize one of the most amazing things that we can have in our lives: health.
So we get back to the US and Dr. G. recommended a new surgeon who also works for the Hospital for Joint Diseases. I call to make an appointment and he's in Haiti helping out with their relief efforts (I already like this guy!). John and I drove into the city on February 4 to meet with Dr. F. (who I should mention is good looking =) John says he looks like Nicolas Cage but I definitely think he looks cuter! LOL. Immediately we can tell he knows what he's talking about, that he's just as confident about doing this surgery, that he can really help me with my feet. Also, he's the Chief of Surgery for one of the departments at the hospital. Not bad!
His main concern is the pain I have on my thighs that I can't get rid of. He's not sure, as no doctor has been sure up to now, that the surgery will improve that pain at all. He thinks it's related to my hips so we do x-rays and everything looks normal. Doofus me! I completely forgot to tell him I broke my hips when I was 5. I didn't just forget to tell him, I forgot it happened! LOL..my mom reminded me as soon as I left the appointment and I had to send him an email. His suggestion is to try a lidocaine injection directly into my hips (sounds painful and I'm not sure of all the details here) to see if that will work. He also thinks I could try Aleve to see if it helps (which I never tried for that reason) but I won't be able to do that as we get closer to surgery because it thins your blood too much and that could be a risk during the surgery.
He will keep trying to help me find something that helps with this pain that refuses to go away because this is not common in the patients he usually sees.
He stresses some of the same facts I've already heard but he said something different that I liked. He thinks that depending on my recovery, we can try going in 6 weeks after the first surgery to do more surgery on the same foot to finish working on all the problems. I think this is so much better than doing it a couple years from now when I'll be back to a regular life. Since I am kind of stopping my life specifically for this surgery, let's get it all out of the way now. I really like the new doc, his staff, and I'm happy that he's younger and hopefully I'll be able to have him follow my progress for years to come.
Sooooo...March 17...St. Patrick's Day! 6 weeks. So much to do until then, we're moving to Shelton this week so I want to make sure we are settled, babies' birthday parties, my birthday...
I know John and my parents are ready to help me in this new chapter of my life. Although we all know it will be a difficult one, I think it will come with great rewards. I am thankful for all the support I have gotten, the phone calls, emails, text messages. For my mom, who will be the best nurse anybody can ever ask for. I thank you in advance because I know this will be just as hard on you, if not harder, to see me like that. For my dad, who may have to carry me around. For John, who gives me so much calm and strength. For my sisters, I wish you could be here!
I have to say that I can't wait to look back on this time...when I am walking around hardwood floors barefoot and wearing cute shoes and not tripping all the time (I am clumsy so we'll have to see about that).
So in preparation for the big day, I'm going to skip all the negative and painful things I could be thinking about and I'm going to focus on the good things I'm looking forward to doing.
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 :)
