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 :)

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!!!

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!