Thursday, March 18, 2010


Well, sometimes not everything goes as planned.

I was thankfully very calm as the surgery got closer. The only time I got somewhat nervous and I think it really hit me is when I spoke to the hospital and got my surgery time. I needed to be admitted by 9:30am and the operation was scheduled for 11am. Oh boy! It was really gonna happen. But that was the only moment of nervousness.

I even woke up the next day (March 17) not sure why my alarm went off so early...LMAOOO. We got up, I made sure to put away all my bottles of water and my lotions in preparation and to avoid the temptation. I took my cat shower ( shower with anti-bacterial soap and then they give you these wet cloths to "dry" yourself with but they make your body sticky so I felt like I just licked myself like a cat! LOL). My mom, John and I were so calm it felt like it was going to happen to somebody else. I think all the prayers and positive energy from family and friends helped sooo very much!

We got to the hospital early and started the process. I put on my surgical outfit and just waited to see Dr. F as promised because he knew I was in a lot of pain and he wanted to see me before we went in to try to figure it out. While we waited, we people watched.

Dr. F finally stopped by to see me and he was accompanied by Dr. G (surgeon who is retiring me and kinda "dumped" me)!!!!! I was so happy to see him there. He came to watch my surgery like he said he would. I thought that was really nice. Well, Dr. F was really really concerned about this new pain, he was worried that the pain would get much worse after surgery and then he would just feel guilty for putting me in that situation. He preferred calling it off since it's an elective procedure and doing it any other time, but trying to figure out what it is right now. He said the first step would be to take an MRI to see if it would be a spine problem, then to see the neurologist, Dr. K (I had already met him 5 years ago when I was first getting diagnosed).

I can't say that I was not disappointed. I was actually really disappointed because I am sooo ready to start this process and it was also a little frustrating because I was just at the hospital on Monday and we could have done all of that then. But I was glad to see he was being cautious and worried about my condition so I had to be happy about that.

Soo then starts our tour through the hospital lol....we saw so many people and went to so many floors. First, I had to get discharged, then we went to the MRI where I was told there would be a really long long as we were already there, I didn't want to leave and have to drive back into the city. Thankfully I didn't have to wait long because the lady in front of me gave up after 5 minutes because she panicked. I had never done an MRI before so I had no expectations, I was okay because I thought I could just go to sleep and it was supposed to be 45 minutes. Little did I know, they ask you NOT to sleep while you're in there because sometimes your body twitches involuntarily in your sleep and the technician told me I had to be in there for an hour and a half!!!!!! Holy kakamoley!!!!! The machine I was in was sooo tight that I started having a panic attack, it felt like I was being buried alive, I tried closing my eyes and taking deeper breaths and it wasn't working. So I decided to pray...pray to every guardian angel and saint I could think of...just ask for them to calm me down so I could go through with the test. And since I so strongly believe in the power of prayer, what do you know??? Not even 2 minutes later, I could feel myself calming down. At one point, my body jerked a little because I was falling asleep and I started praying all over again for them to calm me down but not that much! LOL that I still needed to stay awake so I started singing songs in my head. The most uncomfortable thing is that my right leg and foot started going numb which is very painful for me. My foot felt like a rock and started to twitch a bit, which was out of my control (I didn't take my meds that day because of the surgery). Thankfully I MADE IT! The whole hour and a half!!! I was actually really proud of myself...

Then we headed to the neurologist's office. Again they were fitting me in as an emergency so we waited a bit and then he came in. He was sooo good!!! He knew exactly what to do and what do you know??? All this pain I'm feeling IS a result of the injection I did last week. Not because of the steroids but because the nerve where they applied the injection is irritated. He touched the place on my hip and I immediately felt the exact same pain on my thigh. He's confident this is not a lasting problem and I should be okay within the week. He didn't give me any medicine to take but told me to put the lidocaine patch on it and it should get better. He thinks we should hold off on the surgery for about a week and I should be better by then. Thank GOD! Our last stop was to do a blood test to check to make sure the Vitamin B level in my blood is within a good limit otherwise it could impact how I feel in a negative way.

Today I called my surgeon's office and he's out of town at a conference and will be back on Monday. I guess I'll know more then. The pain is teensy tiny bit better today, it's been a little easier to walk and to stand up. John and I went and sat on Boulevard East because it was such a beautiful day and I just wanted to feel some sun on my skin.

Sometimes life has other plans for us and we have to roll with the punches. I've never been great with a change of plans but I've been so relaxed that I really feel okay about this one. I know it will happen when the time is right.

Tuesday, March 16, 2010

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 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!

Monday, March 15, 2010

My Left Foot - BEFORE Pics

I can't wait to see my "AFTER" pictures :)

Tuesday, March 9, 2010

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 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'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.

Saturday, March 6, 2010

What a special birthday week!

My birthday was 2 days ago...March 3. Growing up, I was annoyingly excited about my birthday every year...I'd start the countdown at New Year's and announce it to the family every day (LOL - imagine growing up with that girl!). As we get older, I still love my birthday but I definitely don't fuss as much or plan huge things.

This year, I wanted to see all my friends and really enjoy myself while I could still walk places on my own 2 feet. My mom says I'm acting as if I'm gonna die but that's not it. I just wanted to have fun without it being a burden, without having to worry about a huge boot, crutches, etc. and get to see all the people I really care about because I'm gonna be out of commission for a little while.

So event #1 was a birthday in Jersey with friends at Las Palmas Restaurant. It was such a fun fun night filled with laughter, catching up with everyone and just having a good ol' time. I saw some friends I hadn't seen in a while and some who I just went away with. Like Laura's beautiful card said, I may not see or talk to you all the time, but you are still one of my closest friends. And that's how I feel about all the people that came out.

On the actual day of my birthday, John said we had to leave the house exactly at 11:40am and he was blindfolding me! How super duper exciting! First, because I've never been blindfolded and second because I love surprises. I thought he might take me to the spa but he drove in circles and completely confused me...but finally we pulled up at the spa!!!!!!! He got me a 60 minute facial and 90 minute swedish/hot stone massage. Oh how I love him!!! And he also took the day off, which I didn't know about. As I got treated like a princess, I really thanked God for all my blessings and for this special week in my life. Later, John took me to eat my favorite: crab legs, crab cakes, and a virgin strawberry daiquiri.

He doesn't usually spoil me like this...but given the circumstances, he wanted me to have a great memorable and relaxing birthday so I can look back on this in a few weeks time and remember how happy I was.

Since I didn't know he would be off work, I had already said I would be going to my church study group. On my way to therapy (one needs to heal the body and soul), I called my parents' house and got no answer. I had a great session and left to go to church. On my way to church I called their house again and no answer. Then finally a light bulb went off in my head. THEY'RE COMING TO CT FOR MY BIRTHDAY!!!!!!!!!! OMG!!!!!! When I turned the corner on the right street, I saw my mom's car and her NJ plates! I got so excited that I dropped my phone under my car. GREAT! And to my surprise, my friends from church also planned a little birthday party for me there.

Today, we also got to have dinner with John's family for my birthday and it was just such a great time. And tomorrow, we are having our game night/potluck birthday dinner with many dear friends here in CT...this has been an incredibly awesome birthday!

Not to mention all the loving text messages, emails, phone calls, facebook/orkut (this is Brazilian facebook) posts...

It's funny how things that happen in your life that would make you think they are a negative can make you feel the complete opposite way. I feel SO SO loved by so many special people and I really feel their support and prayers. And I KNOW how many people are pulling for me. So when I think about it, I can only be grateful to God for giving me the strength to go through with this and for giving me all the tools in life to prepare for such a moment and not question "Why me?" I know exactly why's a lesson I am here to learn and He was so kind to send me all these beautiful and amazing people to help me through this journey.