FINALLY...Something's Working!!!

As someone who has tried such a multitude of medications, you're always a bit skeptical about starting anything new...and the new prescriptions I got didn't exactly start to work right away, as the doc said it would take a couple of weeks, but it was driving me insane to deal with so much pain...and with that much pain comes tears, emotions, etc etc...

However, they FINALLY kicked in about 10 days ago and I have been feeling GREAT!!! My pain is down to a much more manageable level and I'm even waking up pretty pain-free, compared to the mornings when I'm writhing in bed with pain and it takes me a while to get up. I can't even begin to explain how grateful and relieved I am!!!

Unfortunately, my insurance did not approve the medication for the chronic fatigue (something about it not being FDA approved), so I will have to wait until my follow up appointment next week to see if we could try something else to give me a boost at the beginning of the day...I am just praying that these meds LAST! I could use feeling a little normal for a while :)

New Prescription Cocktail

Ohhh the life of a CMT'er!!! To try over and over again to find a set of medications that may help improve our quality of life, battle constant chronic pain and possibly lift us out of our chronic fatigue. I have searched high and low for different doctors, different types of doctors, new meds and I'm still searching for something that will help me - as I am sure are many people with CMT and other neuropathies.

One of my fellow pool therapy buddies recommended I go see her pain management doctor who helps her a lot and he is located in the next town over so I figured I should give it a shot. I made the appointment for yesterday and the hubs came along with me (it's always good for me to go with someone because I can NEVER remember everything I plan to say or ask).

We arrived for the 12pm appointment and weren't called in to the office until 1:30pm!!!! This is one of my BIGGEST pet peeves. What is the point of scheduling a time if you're going to keep me waiting so long? And, in case you missed it, I am going to see the doc for pain, so to leave me waiting that long is not making my body feel any better. We almost asked for the co-pay back and walked out when they finally called us in. My first impression so far was not good.

Thankfully, the doctor was very nice and helpful. I am only his THIRD CMT patient ever (Shocker!) - I am just glad at least that I wasn't the first! He listened to my entire history and we begun discussing what could possibly work and what approach I should take. At the end of our chat, we have added 4 new meds to my daily routine to start off with - well, 3 new meds and 1 vitamin. Two of the meds are for pain and one is for chronic fatigue, which is honestly the one I'm most excited to try.

I am cautiously optimistic about the possibilities and hope at least one of these will help me find some relief. The plan is to try them out for a month and go back to him for a follow up. I am crossing my fingers that I have good news then...wish me luck!

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!!!

Out with the Old, Dizzy with the New...

The anti-inflammatory my surgeon prescribed really didn't help at all...I didn't feel any change the two weeks I was on it. When I saw my pain management doc he wanted me to give him a call in two weeks to follow up and see how/if the medicine was helping. We spoke on Tuesday and I asked him if we could switch from that one to the pain meds I had heard about. He gave me a new prescription which I started taking that night (more on that later).

I also told him how I don't feel that the 30+ pills I'm taking every day are helping me at all. I'm just as tired, exhausted, fatigued, and have no energy. It's been more than 2 months since I started taking them and if they're not helping me out, I'd rather get off them because 1. It's not fun taking so many pills and 2. They cost an arm and a leg! So we agreed that I'll call him in another 2 weeks to let him know how the new pain med is working out for me and at that time, he'll ask for all that blood work again. He wants to compare my first results with the new ones to see if there's any difference.

I started taking the new pain med on Tuesday night in conjunction with the anti-inflammatory. He wants me to take them together at first to try to get the best result possible and then if it works we can scale it back. Well, I have woken up all this week so rested and refreshed, like I'm not waking up with a huge weight over me, and the pain level has been significantly lower. It's actually been SOOOO amazing to wake up like how I would assume most human beings do.

The only downside has been the side effects, which has me really dizzy and groggy! It's been hard to be in meetings at work - falling asleep in front of your boss - NOT COOL! Oh and they also had a belated surprise birthday party planned for me on Wednesday and I felt so dizzy John picked me up so I spoiled the whole surprise...oops! I'm just hoping my body gets used to the meds so I don't have to stop taking them because I'm enjoying feeling lighter :)

Maybe It's Not Over Yet...

I went for my follow up with Dr. Feldman last week to see about the possibility of more surgery. It had been so long since I actually "walked" myself in that the receptionist was shocked (and happy for me, of course)! I was a little ticked off because I have literally never waited so much there...I was "Next" five times, it felt like he kept going in to see everyone else but me...anyway, moving on! When I finally did get to see Dr. Feldman he really couldn't explain why my outer calluses are back (one per foot). He had me walk back and forth a couple of times and said how my feet are perfectly aligned and how effective the first surgeries were.

He ended up coming to the conclusion that the outer ball of my foot is really exposed because we didn't pin those toes and they are still so bent that they naturally put pressure on that part of my foot. The problem seems to be completely fixed on the inner callus that used to be right below my big toe, which now has the metal pin in it. But before he can say that's what's really going on, he wants me to see another doctor at the hospital for a 2nd opinion who's a super genius in the field. He did say that he doesn't think the 3rd and 4th surgeries wouldn't be as intense as the first two. I would probably go straight into a walking cast and able to move. That would be awesome!

He then prescribed an orthotic type thing to wear in my shoes and see how that would work. I'm not against doing this for a short period of time but the whole reason I started this journey was to find "permanent" relief. I use the term permanent loosely since we know CMT is progressive and degenerative, but you get my point. Orthotics only work in certain shoes, won't work if I wanna wear flip flops or if I'm barefoot. And quite honestly, I've had quite a few that haven't helped me at all.

I also pretty much begged for pain meds and he agreed to give me an anti-inflammatory that should be good for the pain. I've been taking it for a week and I'm not really sure how much it's helping but I'm gonna keep trying. If this one doesn't work, I have another one in mind.

I told my new job about the possibility of more surgery and as much as "they want me to do what's best for me" I know they were not thrilled. It's too bad but it's not like I planned this. I also may have to scrap my planned visit to see my sisters and family in Brazil at the end of the year, which I'm really bummed about. But I'm really dedicated to work on these feet and have a better quality of life. I'm just gonna have to focus on the fact we just took an amazing vacation and that'll have to do for now.

Lost ....

Introducing them to a hammock

I'm so glad that we were able to get away...our vacation was AMAZING! We got to see so many beautiful islands, I got to see my friend "the sun" again and it was nice to enjoy some time away from all the madness. Cruising is just the best and we are hooked for life! But even as we go away, I worried about the walking and standing to make sure I wouldn't be in too much pain. I also packed some meds so I could hopefully get some relief too.

Introducing them to the good life

A really strange thing happened with my left foot as we were away...I must've banged my big left toe one day going into the pool, and when I got out, there was blood gushing everywhere from the tip of my toe, which completely freaked me out. It actually looked like the pin in my toe was coming out (I know...totally gross!!!). After my shock passed, thankfully nothing was coming out and it stopped bleeding just as quickly as it started. Unfortunately this incident happened one more time while we were walking on a dock and I decided I'd just wear my water shoes the rest of the trip and not my flip flops.

Introducing them to the pool

This trip also made me think a lot about my life and the future. Sometimes it's not good to delve into all this thinking but it's hard to get yourself out once you've started it. And John and I started to talk about children...should we have them? Not out of fear to pass on CMT, more out of fear that I'll be too exhausted to take care of them. How will I manage? Also, we are SOOO not ready to be parents to any little gremlins yet, but what if we keep waiting and then I'll just get more and more tired?

And then, what about work? I'm sooo exhausted ALL the time, the 33809 pills I'm taking are not really helping and are not really giving me anymore energy. I also feel like my muscle and nerve pains are getting worse. How much longer can I do this? Should I ditch it and go for disability? But what about buying a house, going on vacations? I'm still so young and I truly enjoy working and the money doesn't hurt. I don't think I'm ready to give up working yet...

So many questions and so few answers. I've spent the last few days in an emotional funk but I think I'm finally finding my way out. I think dealing with constant chronic pain can have its ups and downs and it's hard to stay positive 100% of the time. I've had some really positive conversations this week with friends and especially my mom (Thanks for letting me talk your ear off for 2 hours and 10 minutes last night...LOL). I'm so grateful to have a strong faith in God because that's where I find the strength when I feel I'm running a little low on it.

For any CMT mommies who may read this...did you struggle with the thought of having children because of the fatigue factor? How did you work through that?

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!!!

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....