CMT and Pain

There are many different symptoms that identify CMT. Not only is our condition the most commonly inherited neuropathy, but it also manifests itself differently from patient to patient. One of these symptoms that I would like to discuss, which is not exactly accepted by all doctors, is pain.

According to Wikipedia, pain is an unpleasant feeling often caused by intense or damaging stimuli, such as stubbing a toe, burning a finger, or putting alcohol on a cut. The International Association for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."

Pain is what led me to my Charcot-Marie-Tooth diagnosis and my pain has evolved over the years. Back then, I had pain on the balls of my feet because of my calluses and felt pain with each step. Then I began having a lot of "charley horses," pain in my calves, which I still have to this day. My most challenging form of pain wouldn't make its appearance until years later - my thighs. It's a strange form of pain, hard to describe. It feels like pressure, as if there is something permanently suffocating my thighs. This last type has become my biggest concern as it just refuses to go away, ever! It's my companion 24 hours a day...always present in my life. As I have described in earlier posts, I have started to take medication and do therapy that help give me some relief. However, many doctors still do not accept the idea that CMT causes pain. They try to tell you that you must have another unknown condition. As if one invisible disease wasn't enough! 

It can be extremely frustrating to try to persuade a medical professional of a symptom you have that is being caused by an actual diagnosis you have. The more and more I speak to different CMT'ers throughtout the world, I am convinced that pain indeed is a symptom of CMT. It would be great if we and the professionals who can help us were on the same page.

I wanted to write this post because I recently found out about an organization that very much cares about pain and is doing everything it can to help me and people like me. One of my dearest friends from church and I have always had a very special bond. She has a neurological condition and also has feet and pain problems. I always say that she's my body double! She recently attended a conference organized by the International Association for the Study of Pain (IASP), mentioned in Wikipedia quote above. She returned from this event extremely excited because this is a very serious organization, highly respected in the science world that focuses on research about pain. She told me that there were over 7,700 individuals from all over the world at this conference; discussing updates, presenting new ideas, and exchanging information. All of these professionals had one goal in mind: helping to alleviate pain, physical or emotional.

Over 1,000 professionals during one of the sessions.

I just wanted to share this information because it gave me a lot of hope and maybe it can do the same for you. It's great to know that there are thousands of people out there looking for a way to help ease our pain and suffering, and not only professionals in the CMT field. I am not holding my breath that there will be a cure in my lifetime, but I am very hopeful that I will be able to live happier, less pain-filled days sometime in my future.

End of a Chapter

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

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

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

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

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

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

Understand Someone With Chronic Pain

This is by far the BEST article to describe Chronic Pain and how we feel. This is a great tool to share with family and friends to help them better understand: Understand Someone With Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand: These are some things that can help you to understand, and help, people who suffer from, often debilitating, chronic pain.

Steps:
1. Remember that being sick doesn't mean that the sufferer is no longer a human being. Often the chronic pain sufferer spends most of their day in considerable pain and exhaustion. If you visit or live with them, they may not seem like much fun to be with, but they are still as aware as you of everything and have needs just like you, but they're more or less stuck inside a body with constant issues over which they have little or no control. Just like you, they still worry about studies, work, family, friends, and most of the time, would like to hear you talk about your interests and happenings, too.

2. Learn the code. Chronic pain sufferers will often talk differently from people free from constant pain. Living with fatigue, irritability, and sadness at their plight, many sufferers learn to bottle up their feelings and use code to cover up the level of pain. There's also a number scale for pain that doctors teach chronic pain patients early in their treatment. By habit, they may describe their pain on a scale of 1 to 10 where 1 is "no pain at all, feel wonderful" and 10 is the worst pain they ever had in their life. Their pain level ten may be outside your experience, it depends on what you've been through in life.

• Don't assume that just because the chronic pain sufferer grits their teeth and says that they're fine that they are. They could very well be covering up, fed up with the lack of understanding in others as to the constancy of their pain.
• Accept that words may be inadequate to describe how the sufferer is truly feeling. Think about a time when you experienced pain, like a broken leg, or a very nasty virus that pounded at your head and every muscle in your body. And multiply that and think of it being constant, every day, without respite. It's hard to find the words for that sort of pain.

3. Recognize the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but chronic pain sufferers have often been sick for years and their pain-filled lives have caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they're in. They don't want to be miserable all the time but they often have to work hard at not being miserable. So, if you're talking to them, and they sound happy, it means they are happy, that's all. It doesn't mean that they're not in a lot of pain, or that they're not extremely tired, or that they're getting better, and so forth.

• Respect that the person who is in pain is trying their best. Avoid saying, "Oh, you're sounding better!" or "But you look so healthy!" They are merely coping; sounding happy and trying to look normal. If you want to comment on that, it's certainly welcomed.
• Look for the signs of pain over the words, so that you can read between the lines. Things that will belie the chipper attitude include restlessness, shifting about, grimacing when they think you're not noticing, sweating, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language

4. Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make lighter of their pain than is the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they're hiding or minimizing.

5. Understand and respect the chronic pain sufferer's physical limitations. Being able to stand up for ten minutes doesn't necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn't imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don't know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

• Insert "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, to this step, as the curtailment on a sufferer's ability to be responsive applies to everything that you'd expect a person in good health to be able to do. That's what chronic pain does to its sufferers.

6. Leave your "pep talk" mode for your kids and your gym buddies. Realizing that chronic pain is variable, keep in mind that pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it's quite possible (for many, it's common) that one day they're able to walk to the park and back, while the next day they'll have trouble getting to the next room. Therefore, it's vital that you don't fall into the trap of saying: "But you did it before!" or "Oh, come on, I know you can do this!" If you want them to do something, then ask if they can and respect their answer.

• Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, "getting out and doing things" does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don't know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to "get their mind off of it", may frustrate them to tears, and is not correct advice, especially if you're not medically trained and haven't got a clue. If they were capable of doing some things any or all of the time, they would.
• Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. You can't always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

7. Never use throwaway lines. Assuming you know best by making such statements as "Ah well, that's life, you'll just have to deal with it", or "You'll get over it eventually. Until then, you'll just have to do your best", or worst of all, "Well, you look well enough", etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope. Psychologist Mark Grant suggests that you throw lifelines rather than throwaway lines, by saying something like: "So how have you survived?"

• Admit it when you don't have answers. Don't paper over your ignorance with platitudes or bold allegations not based on fact. There is no harm in saying "I don't know" and then offering to find things out.

 8. Check your own patience. If you're impatient and want them to "just get on with it", you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

• A chronic pain sufferer may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
• Be very understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they do have no choice but to do it right now, and it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

9. Be sensitive when suggesting medicines or alternative treatments. Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it's not because they don't want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven't worked carry the emotional pain of failure, which in and of itself can make the person feel even lower. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how you bring it up.

• On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable. He suggests that people rarely ask these open-ended "helpful questions" that would help the chronic sufferer to open up and really talk.

10. Don't be put off if the chronic pain sufferer seems touchy. If that's the appearance, it's probably because they are. It's not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11. Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they're too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the "normalcy" of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

12. Balance your carer responsibilities. If you are living with a chronic pain sufferer or supporting such a person on a regular basis, you need to maintain balance in your life. If you don't take care of your own needs, health, and work-life balance, being around the chronic pain sufferer can bring you down even though you're probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as you're able but also care for yourself.

Yes, I'm Still Alive!

I can't believe it's been almost 3 months since I last wrote on my blog. I have had a million things to write about, but life kinda got in the way. I will keep this short so I don't bore you to death or quit before I can finish it...

I have had an insane summer...surgery in July, return to work after two weeks, then John and I were very blessed to find our perfect home and purchase it in the beginning of August, spent that month renovating it, moved in on the weekend that "Irene" decided to hit Connecticut, lost power for one week so we had to keep going back and forth to our empty apartment just to shower and use the fridge, and on top of all that, I have been planning 7 work events for September and October. If you got tired just reading this, imagine living it, with a condition that already exhausts you for doing the smallest tasks?

Oh and did I mention how I totally missed CMT Awareness Month? Really annoyed about that...was just too insane to think or write about it...

Unfortunately, my body couldn't take it anymore and crashed in a really bad way a little over two weeks ago and it was my worst experience with CMT to date...I seriously considered going to the hospital because even my strongest "back-up" pain pills did not work. Eventually, my doctor was able to help me figure out what medicine might work, but it's now almost 3 weeks later and I feel like I'm still recovering.

To make matters even more "interesting" my job decided that if I could no longer attend the events (I asked to not attend any event in the month of October for fear of the pain flaring up again), which are a major part of my job, that they might have to replace me!!!!! STUNNED SILENCE! Thankfully, that situation worked itself out for the best...they really love me there and did not want to see me go so they've offered me a part-time position where I get to leave work at 2:30pm everyday with a very reasonable package. Even though we don't understand His plans all the time, things seem to have a way of working themselves out sometimes...

My new schedule will begin this Monday and I CANNOT wait to get home early, get some rest, and then actually try to live a little. Hopefully, I'll be able to come back and write lots more because this is the condensed version...I have a lot more to say about everything...but let's wrap it up here and hopefully I'll return very shortly :)

Change of Meds...NOT a Good Idea!!!!

I had a follow up call with my pain management doc on Wednesday and told him the amazing news of how I've been feeling so great, that I finally figured out how to take the pain meds in just the right dosage for me, how I'm so happy to be waking up and feeling so well. And I also had to tell him that I stopped taking all supplements because I started having some freak rashes all over my body and I wasn't sure what it was...it turns out they were bug bites, not supplements.

While he was obviously happy for me, he was a bit concerned about the blood test results that he received for some tests I did a couple of weeks ago. The levels for my energy are extremely low...scary low, as he put it. And even though I've been feeling so great, it really is just the Tramadol getting me through the day. Some of my other levels are also really really low so he recommended that I continue to take some of the supplements, which was fine by me. I just didn't wanna go back to taking 33 pills a day.

Initially, he prescribed me the short-acting type of Tramadol, the type you have to take every 4 to 6 hours. He explained that if that worked, we could try the long-acting form so I would only have to take 1 pill a day instead of 4. Sounds great in theory! When we spoke on Wednesday, he asked me to try the long-acting form and I noticed right away on Thursday that I did not feel the same, it did not give me the same relief. But I do try to give all these meds I try the benefit of a doubt, so I tried taking it again on Thursday night...and was unable to go to work on Friday :(

I just woke up so weak and in SO MUCH pain, that it took all the energy in me just to shower. I hate calling out sick, especially when I need my sick days next month for my surgery! I didn't have any energy all day long to do anything but sit/sleep on the couch. I felt better as the day went along but got worse again at night. I called his office and pretty much told them I would take 2 long-acting pills tonight and if I wake up a mess again tomorrow I'm going back to what I was doing before because it was clearly working.

It's so crazy that I've been feeling relief for such a short period of time, and yet, it's almost like I forgot all about how things used to be "before." I honestly can't even tell you if today's "episode" was better or worse than my every day life before I figured out my Tramadol dosage. And I used to get up in the morning every day feeling a mess and manage getting out the door and today it literally got the best of me.

I am just so THANKFUL for medicine and all its advances because here I am today reeling but hopefully this will be figured out soon and I'll have the relief that I need. I have to admit that it was a scary day to feel so debilitated, to be in so much pain and to be unable to do anything for myself. Hopefully this won't last!!!

Sometimes Things CAN Get Worse...

I'm not sure what I did wrong...but I'm in too much pain to walk now. I've been walking great and about a week ahead in progress compared to last time. So John and I have been house hunting since I came back home and we saw 3 houses on Thursday. I didn't think that was a big deal since we had done that before. I came home and my foot was already bothering me so I decided to stay off it the rest of the day.

Then yesterday I stayed off it all day until it was time to go see Harry Potter. Since my friend got herself a baby sitter for the night and drove all the way up from Jersey, I didn't think it would be fair to bail. Well, I should've probably taken my wheelchair. I came back home almost wanting to crawl to my apartment door...that's how much my foot hurt.

So it's really swollen and still very painful today so I'm staying off it the entire weekend. It's kind of a bummer. I've been doing so great and my foot has honestly not hurt like this since the first couple of days post-op. Thankfully I see my surgeon in 3 days and we'll see if anything comes up in the x-rays. Hopefully it's nothing serious!

I'm in Pain...

I haven't really felt like writing these past couple of weeks because I have been pretty uncomfortable. I've been weaning off the pain meds carefully and a little more slowly than last time so I wouldn't suffer as much. And I finally called it quits on Saturday. Oh boy. What for? My entire body just aches, but mostly everything from my thighs down.

My legs have been hurting so much that I haven't been able to sleep (went to bed at 5am yesterday and only because of sheer exhaustion). Needless to say, it's been a rough few days. Yesterday, it definitely got the best of me and I got a good cry out of it. Then John was nice enough to take me to sushi, where we had an amazing dinner, and then we watched part of Harry Potter: Goblet of Fire (in preparation for Deathly Hallows on Friday, I can't wait!!!!). At the end of the night, I was really happy and not to mention, exhausted from lack of sleep, which trumped the thigh pain, so I was able to sleep at a decent time. But since I got a good night's sleep last night, it's probably too much to ask for two in a row, so I'm in pain and can't sleep because I'm so uncomfortable. Yes, I am tired but my legs just hurt too much. So I caved and just took half a pill, which will probably start working in 30-45 minutes and I'll be able to sleep then.

I cannot wait until Tuesday! First, I have my final surgeon's appointment at 10am. Then, I am going to a new pain management doc, and I am "trying" to be cautiously excited, but I think I'm not doing a good job. I am very hopeful that he will help, that he will shed some light on my situation. I'm starting to think that all this thigh pain isn't CMT afterall, none of my CMT buddies seem to have it, except for my sister. Could it be another complicatedly-named-genetic disorder we've never heard of?

This is the reason why I'm so hopeful: Pain Management Doc Helped Woman with Unthinkable Disease

So please wish me luck and say a little prayer as I gear up to meet this guy...may he have the right treatment for me and help me get over this pain...or even just help me get more energy to get through the day. I'll let you know how my appointment goes...and if he puts me on any crazy diet. (Please just don't ask me to eat bananas, celery, or olives.)

Just so this entry is not a total bummer, I'd like to point out totally unrelated positive news. My beloved orchid, a gift from a dear friend, is coming back to life. I thought I had lost her for good after she gave me 8 beautiful flowers this summer, but I came back home to see John took good care of her for me while I was gone and she'll be out to greet me again soon.

My beautiful orchid almost ready to come out. I can spot 4 future flowers :)

How she will look in a couple of weeks :)

Surgery #2 and an Unexpected Surprise

I am happy to report that surgery #2 was a success!!!! This time I felt so much more prepared and at least I knew what to expect, except for the delay. Unfortunately Dr. Feldman's 1st surgery ran late and mine didn't start until 3 hours later...needless to say, I was STARVING!!!! I saw a lot of old faces from the first one too and that made me feel even more comfortable.

The days that followed were very similar, A LOT of pain on the first day, a lot of itching (as a result of the meds), drowsiness, dizziness and all that good stuff. But there were also a lot of the great things from the first one, visitors that brought me yummy food and TLC...Thanks Jess for my Mexican food, Dorothy for Crumbs' cupcakes, Vero for my Get Well Teddy Bear...and also all the beautiful flowers from other wonderful friends...

At home, the first few days were really tough too, just getting used to my strong meds again, the dizziness, and how much they affect your belly. Oh man, getting up the stairs coming home was hard again, how easily the body forgets LOL. After 3 pretty crappy days, today has been a much better day!!! Feel like myself again, just with a cast at the end of my right leg. And my left foot is behaving so nicely, all new and strong, supporting the weight of my body with no complaints.

I feel like a weight has been lifted, like I pulled the band-aid. The surgery is done and now it's just my way to recovery. I already go see Dr. Feldman to remove the first cast and the stitches next Thursday and before I know it, I'll be walking again.

And in the midst of all this craziness, I got the best news...I got the job!!! I cannot even start to describe how excited I am! Things were really meant to be!!!! My original surgery date was September 20 and then Dr. Feldman's office changed it to the 22nd. And instead, I had a first interview on the 20th and a second interview on the 21st. And they loved me (Why wouldn't they? I am pretty fabulous!)! They're going to wait until I recover so my start date is December 1. I am so so happy that I don't have to look for a job as I start to get better, that I have an even better commute than I had before, I get my own office, and most importantly, I get to do what I really really enjoy.

So I guess the lesson here is to keep your head up, just as you are struggling in life (i.e. pain), God has a plan for you and he might surprise you at the end of the day with something totally unexpected :)

My aunt, visiting from Brazil, got tired of the waiting too and decided to take a nap LOL

Happy 2 Months to My Foot!!!

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!!!

LOL...I think I spoke too soon...

Or I felt too much like Superwoman that I overdid myself. Since I am blogging to document everything, I really should say today was the COMPLETE opposite from yesterday...

I felt fine in the morning and as I got ready to go to the movies with my girlfriends. I even managed to go down the 5 steps out of our apartment building ok. Right foot first, then left foot, right, left...ok! Well I wasn't paying attention when I stepped off the curb into the street and I stepped left foot, then right foot and I freaked out that I changed the order. I might have been ok but I wobbled a bit and kind of just banged into the car. No biggie.

Well, as soon as I got out of the car at the movies, I was definitely in pain and it only kept getting worse. We watched the movie and went back to Emily's house where I saw my foot was swollen (1st time it happened since the cast came off). I spent the rest of the day icing it and keeping it elevated. The pain from laying down all day has bothered me so much, I'm still up.

I have to admit, I am a little disappointed. I was so excited to be independent yesterday and today I went backwards. I get that this is part of recovery, but I am still a bit bummed. Another part of recovery that I need to get used to is knowing my limits...since I've never done this before, I don't know when too much is too much. But as with everything else, I will get the hang of it.

Weeks 4 and 5: To be Honest, I've Been Better

The last 2 weeks have definitely been full of highs and lows for me. I'll start with the lows so I can end on a high note.

When I saw my surgeon over two weeks ago, he asked me to start weaning off the strong meds (narcotics) I've been taking since the surgery. So over the course of the last couple weeks, I have been reducing the medication by half and also spacing it out more. Finally, I felt good last Thursday and decided to stop taking it altogether. I was so proud of myself, my operated foot felt fine and so I went most of the day without taking anything.

However, my old pains had a different plan in mind. The medication was so strong that it made me forget how strong the pain in my legs really is when I am laying down for hours at a time. No medication or treatment I have ever tried has worked to calm them, except for this, which is clearly not the right solution. So that first night I battled with myself not to take anything and see how far it could go. Well, I ended up giving up at 2am and taking a full pill because I had already been brought down to tears and it was just ridiculous at that point. So the next day I tried spacing it out 12 hours - not good. The following day, 10 hours...didn't work.

On Sunday night, I talked with a friend from church and her husband, who is a doctor, who were kind enough to sit with me and try to figure out what kinds of treatment may be helpful for me. He was extremely resourceful and had lots of ideas that we could try and he was also going to speak to a pain specialist about my case. Thank you C & G!!!

On Monday, I went to see my regular podiatrist who has been so helpful and kind to me over the years. We talked about different options to try to ease the pain and I also talked to him about the ideas that we had discussed the night before with our friends. The first thing that was important for me to do was to increase my dosage of Lyrica to try to help with my nerve pain...since the surgery, I've had really bad nerve pain on my left foot. He also gave me two prescriptions for new pain meds that are very strong, try one for a week to see if it works, if not, then try the second.

I started with the new medication immediately. It did have its side effects so I spent most of Tuesday in the bathroom (I know this is TMI). However, I wish that was my biggest concern. As my stomach started to calm down towards the end of the day, the pain in both my legs and the nerve pain picked up and I couldn't sleep until 6am on Wednesday. It was one of the longest and most difficult nights of my life but I have my parents to thank for sitting with me, for crying with me, for taking turns with each other so the other could catch a few zzzz, after all they both had work the next day. I have to say, I hope to make them both very happy still...because the saddest thing is to watch your parents cry for you because they see you in pain. I can't promise it won't happen again, but I do hope to still give them many tears of joy.
Kal & Mica - didn't want you to worry so I didn't tell you today...but I'm better now so please don't worry.

Tonight the pain seems to be ok, not gone, but under control. I just can't sleep so I turned to writing on my blog again at an odd hour of the night....that's when the magic happens!!

As for the highs, it would seem that it's impossible to find them when the last two weeks have been about managing my pain, but I have been fortunate to go to church a few times, I can feel my upper body getting stronger and holding me up better, and I have gone home to spend a few days with my hunny.

At church, I got to see sooo many dear friends and hear some words of comfort and support from everyone. It was beautiful to see how many of our friends lined up to help bring my wheelchair (with me in it) up the stairs. I am really phobic of stairs so it wasn't the easiest thing for me to do, but I made it. I heard a lecture from a young woman my age whose life I could really relate to...and she chose to end her lecture by singing a song about how the pain will pass. I was already emotional enough from the outpouring of love and support, so it was no surprise that I let out my "bucket" of tears. I truly enjoy a good cry and I just felt so much lighter afterwards.

My mom drove me home to CT and I was able to spend a couple of days with John and also got to see so many of our friends there. It felt nice and odd to be home, since it had been almost a month that I'd been gone. I have to say, he's doing a great job keeping up the place on his own...I've taught him well :)

I knew this journey would be full of ups and downs and I was ready for them. Sure, it's not easy as I'm going through it, like a sleepless painful night. But today, that's a memory. At first, going up and down the stairs was so difficult and now I've actually done it twice in one day and even a few days in a row and no soreness. I know it will get easier as I go and hopefully I'll be out of the cast and able to move a little more so my legs won't be so sore. I am hopeful this new medication will work for me so that I will be able to keep taking it even after I'm healed to get some relief.

Today, I was so tired from not sleeping so a couple of friends came over to help. One of them (who is older than me) just recently went through her own medical scare and sudden surgery and in a moment of difficulty, she said she thought of me. That she had seen how strong I have been through my process that she had to try to be stronger through hers, that I was an example she wanted to follow. That was so sweet and nice to hear!

Good days give you happiness, bad days give you experience.
Both are essential in life.

I am keeping the faith....

Question to all CMT'ers

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?

New Date....April 16

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!

Say a little prayer for me....

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!

Visit to the hospital...

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.

This is my journey...

The reason I decided to write about this is because I have a terrible memory so I thought I should get a diary, I would like to look back on this a year or two from now and remember where I was. But I think I would be too lazy to write it down so typing is easier. Well, since I'm gonna type it then I would like to share it with my sisters, parents, and boyfriend...so why not just do this? I'm very comfortable talking about this stuff and for me, talking helps. It's definitely therapeutic. So here it is...

I feel that I have been a very fortunate and happy person. Fortunate to have amazing parents who raised my sisters and I in a happy home. Blessed to have a great belief system and faith in God. So happy to have found someone who loves and supports me.

We had a great childhood, lots of time playing on the streets with friends, going to the beach, being at grandma’s house with all the crazy laughter and loudness, even hanging out at the farm here and there...building a solid foundation that would prepare us for the obstacles later in life.

We moved to the US in 1996, in the middle of my teen years. I’ve always been the good, responsible, A+ student so I applied myself and learned the language quickly and grew to love this country to be my home. I continued to push myself in college and got myself a job in Manhattan where I would gain great work experience.

I’d say things started to change a bit in college, can’t say exactly when but I started to feel a lot of pain on the bottom of my feet and calluses started to form under the balls of both my right and left feet. At first, I would soak my feet and cut the calluses off with scissors but the calluses always grew back. My technique wasn’t the best and there were times when I’d cut deeper than necessary and end up hurting myself more. Eventually, I came to find a doctor who I truly appreciate and visit regularly to this day, Dr. A, who uses a blade to shave the calluses off (I feel absolutely no pain while he is doing it). He has been extremely important in helping me throughout this process…as you will see.

My commute to NY was pretty grueling and in college, I would go into the city, walk uphill to the bus (sometimes stand in it through traffic into the city), walk to the train (sometimes stand in the train til my stop), and finally walk to the office. Then I would do it all back home, get in my car, sit in traffic and drive to campus to take night classes. In a way, I’m glad things were just starting then because I would never be able to do that today.

I went through a pretty stressful situation in college and this is when CMT came into my life. It was there all along because it’s genetic but until then, it hadn’t really come out. My feet started to get worse and I started to visit Dr. A. a lot more to deal with my calluses. Shoes became more impossible to find and even worse, wear! It was hard in the summer, because my feet couldn’t hold flip flops. It was hard at work because I couldn’t find decent looking shoes for the life of me. And in the winter, it was hard to find boots that my high arches could fit into.

At this point, my pain had escalated to feeling it with every step that I took, 24 hours a day (obviously not when I was asleep), 7 days a week. One day, on a regular visit with Dr. A. I noticed that he was touching my toes and I couldn’t feel that he was touching me. So he poked my toes with a needle and we realized that I had lost some sensitivity. This is the first time I heard of Charcot-Marie-Tooth (CMT), which is a neurological disorder. This is when my search for answers begun. I felt all this pain but no doctor could ever give me a clear direction. At least now I had a clue of what to look for. I saw so many doctors, podiatrists, neurologists, geneticists, etc in my search for a diagnosis.

After seeing many doctors, I stumbled upon a geneticist and his team at the Hospital for Joint Diseases who ran some more specific (and at times, painful) tests, including a blood test that would officially diagnose me as a CMT Type 1A patient. It was a relief to know...to be able to give it a name...to read about all the symptons...to read similar stories. At the same time, the diagnosis is that CMT is a progressive and degenerative condition with no cure or specific treatment or medication, so it would continue to get progressively worse and there was no sure way to stop or treat it.

I think this is when faith in God comes in and the belief that everything happens for a reason. I was blessed to be raised in a spiritual home where we believe in God and his love for all his creatures. We believe that we are all here to learn a lesson, to grow spiritually and to learn to love one another. CMT is here to help me grow as a person and to help me correct wrongs that I did in the past, in another life. DISCLAIMER: I'm not sure who will be reading this and you don't have to agree with what I am saying here but this is what I believe in and I know I am better person because of it so please don't rain on my parade LOL.

Because of Spiritism, I have never once questioned: WHY ME? I am ok and prepared to face whatever situations may come my way, but there are obviously times when emotions spill over and you can get a good cry out and then back to normal.

Eventually, I have started to feel a lot more pain in my thighs, a lot more cramping on my calves and my feet have gotten more deformed. Now, I can feel myself get exhausted from a simple supermarket trip or standing in line for a few minutes. I need a few days to recover from any extra activity outside my normal routine. I would not dare go to a theme park or zoo and walk around all day because I know that 1. I wouldn't be able to do it for more than a couple hours, 2. I would be in even more pain than I usually am. If I did want to go (which hasn't happened in a while), I would be willing to rent a wheelchair for the day to enjoy.

I think one of the hardest things is that I don't really think that people believe you're in as much pain as you say you are or that you're just lazy. I'm young, pretty (sometimes...lol), talkative, outgoing...how can I possibly really have what I say I have? But I don't look like I'm in pain...how do I explain that? Well...for me, I feel pain every minute of my life, so how can I live my entire life showing how much pain I'm in, how miserable would that be? You kindda get used to it and learn to deal so that it doesn't normally affect my personality that much. On days when things are worse, then it's impossible to hide it but even then, an outsider can't see!!! It's not like I have an open wound, or like so many people have heard about CMT, so you just have to believe me. Recently, I have had a few people dispute my "handicapped" parking because I couldn't possibly need the help to park closer...those were fun experiences!!!

Please don't feel sorry for me...I've had and will continue to have a very full life. I lived up my years in college, partied with friends, traveled back home and danced all night to Ivete and Banda Eva (which had its consequences later lol), etc. I've gotten older and my interests have changed. I don't enjoy the same things I used to like going club on a regular basis. Now, I'd much rather hang out at home and have game nights with our friends. I don't care if these little adjustments are due to the fact that I am maturing or CMT. I'm still happy either way. Lately, I've been working on my prayers and trying to just be grateful for this opportunity that I have to learn...learn from my mistakes and work through my own karma.

Recently, I've decided to have surgery on my feet. After trying every possible recommendation that might help the pain (i.e. physical therapy, acupuncture, pain medication, yoga, etc) and finding the effects only last for a short while, surgery is really the last resort. So now I am unemployed and just waiting for the surgery to be scheduled. I know it will be a long year ahead of me but I am ready....more on that on the next post!

CMT may have taken me, but it's not going to beat me!