A Long Overdue Update

It's been a while since I given you guys a full update on life back in NYC after my total hip replacement, and my continual issues with Lupus. Well I can tell you.. it has had it's great moments and it's bad moments. So here's what's been up....

Since coming from Florida, I was initially feeling great and had plans to join a Pilates class to continue my therapy workout. Unfortunately, I haven't signed up for Pilates, as small and gradual flare-ups reappeared in my knees. It's been frustrating because despite the slight exercises I might try to do, it does little to alleviate any pain or swelling. I've slacked off a bit with the cold packs. Not that it's an excuse, but it was only giving a very temporary relief. As one leg (my left & operated leg) got better, my right knee decided to swell right up to the size of a small melon. So it's been trying to get that better. Though at the present moment it's not as bad as it was at first... it's still not healed all the way.

I went for a new complete re-evaluation of my case at the Hospital for Special Surgery, which happens to have a Lupus center of their own. Seeing this new rheumatologist was just what I needed. He made me feel hopeful and redetermined to figure this situation out. He had questions but an outlook that we were going to get answers! What a great feeling. I was beginning to feel despaired, worried that I was going to forever be the giant medical question no doctor could figure out!
Well sure enough, going to find out my results, we found that I was too anemic for comfort, that I was extremely Vitamin D deficient... (maybe I should head back down South??), and a few other things that had already been established. Still 5 years in the working, Lupus has not shown in name in my blood work. But it is still within all my symptoms. It is still in the pain I am in the majority of the time.
However, it does not control my life! I am as active as I could possibly be. I am back to work full-time, and I have all my friends & family there for all the support a girl could ask for.

My doctor and I are set and agreed that the new plan is to start over. I'm back on Plaquenil 200mg at bedtime. Naproxen for pain, Predisone to bring down all my inflammation. We will also be adding a large dose of Vitamin D once a week, Iron 3x a day if I can handle that many. Depending on how I feel in 3 weeks, we will then start to look at other medications. Including the brand new on the market...

Benlysta®. It's given thru intravenously, which of course isn't much fun, but please click and read the following link for additional break-thru news on this medicine. lupus.webmd.com/news/20110309/new-lupus-treatment-benlysta-faq.

At this point in my life, I am back to trial & error, with re-newed hope that I can find something that will kick in and send me into some form of remission. I sometimes feel like I've reached my limit, but then God gives me a day when I feel great and I know I can continue. The best  news I received today was that with a little help from the methods they have in place, starting a family will be the one normal part of life they can definitely give me. Granted with all the underlining conditions, they still have ways to help women like me have successful pregnancies, and well there wasn't anything in my results that would completely prevent me from trying! So I am once again ready to do what God put me here to do....survive medical impossibilities!

Thanks for keeping up with my journey. I'll be back soon!

A Week Back Home In The NYC!

It's been a few weeks since I entered a progress report. Here are the few changes that have occurred so far.

It's been a week since arriving back to the Bronx in NY. There's definitely much adjustments to made here. I have to admit that I've been lazy and not up to par with my exercises since leaving Florida Which has left me limping and a with achy, slightly swollen leg. It seems instantaneous that I have spent the majority of my days running all over the borough, visiting friends and family. Yet, my body has not lacked in reminding me that I still must stay disciplined with my recovery regime, if I am to reach that 100% goal. I find that it is extremely easy to become distracted with the busy bustle of the city. But I am still very in-tuned with the work I know has to be completed to reach the "remission" goal I want to claim. Thankfully, I start back to work in a few days, which will make it easier to maintain a schedule for exercises and alternative therapy plans.

Even though I am back at home sweet home, I can not falter in my path of recovery. I can not become comfortable with all the familiar things I was use to prior to my surgery. I have learn to listen to my body when it calls for rest. I've realized how effortlessly is it to "take a break" from all my hard work.. but even in writing this post, I scold myself, knowing that I must continue my hard work. To maintain a healthy body shouldn't be "work", it is my new lifestyle. An everyday routine. Time to tweak my focus back onto the right track!

Be safe, and stay healthy!

Clean Bill of Health! My New Normal!

It's been 3 weeks since I've been home from rehab. And therapy has continue to go very well. I am now very proudly walking without a cane, and I could not send enough thanks & praise to God for allowing my body to heal and mend so quickly. I haven't felt so strong in such a long time. Even though I still have some way to go, it's such a different feeling. Amazing to remember what standing straight feels like. The simplest movements for some people perhaps, movements most people don't even realize they do, as a result of being a natural reflex. For me, it's a nostalgic experience. It's a memory that was lost and found miraculously thru the medical advancements of today. I can definitely say that I've had my share of feeling like I was an experiment for the medical field... but as with anything else in this life... there's the good and the bad. Thankfully, after a two long painful years...I am on the good end of it.

So I've been cleared by all the doctors I've seen here, as well as the physical therapy side of it. And I am ready to venture back the the busy city of New York, and take hold of my life they way I've been working so hard to do. The journey to this point in time as been hard and long. I am ever grateful for the faith I carry, for the people who have stood beside me, who have prayed for me, and who have shown me so much support. My hard work does not end here though. There is still no cure for Lupus and still much to learn. My battle with Lupus is one that has to be overcame time & time again. Something to be continually  researched. Perhaps my new calling. But I will not let this disorder take over me again without having a clue or a plan of how to overcome it again, if even for a short period of time.

I am looking forward to finding myself in some kind of "remission", as I am feeling like I am almost there. I am ready to embark on my new journey to a new normal. One fit just for me. Where walking will not be vain in my life. Food is already taking new form and new meaning to me...as a way of healing, not just comfort for emotions, but literally, a way of comfort for my body. A new normal for me will include introductions of different methods of exercises, such as pilates. It's like one of those moments in life when you sense that you've been given a "new lease" on life. Things change, you grow to be mature and wise, and suddenly after all the rains and storms, you've become the best of the person you always knew you were. A bit like the Hollywood movies, but perhaps that is what happens. All I know is that I feel better than I have felt in so many years. God never ceases to amaze me when after what seems like the worse of the never ending worse, He is able to ease all that was. Preparing me for something wonderful.

Life is never easy, but if we learn to listen to Him more closely, perhaps we would also be able to listen to our bodies, and our souls in profound ways. Even during those difficult times. And then maybe, during times of illness, we can be stronger than we could have ever imagined. We can heal, mend, recuperate, and handle physical pain in manners that would take any doctor by surprise. This for me, is a movement of the Holy Spirit living, and working thru my mind, body, and soul. This is how I intend to take control of my clean bill of health and how I am going to live my new normal! 

World Lupus Day 2011

Today, May 10th, 2011, is World Lupus Day. I was thrilled to see that the Lupus Foundation has such a day! What a way to bring awareness of this disorder. Knowing this, it gave me the opportunity to share, research, and learn with and from others! It also gave me a chance to catch up with ole friends and share stories of God's great mercies and miracles in our lives! I'm beginning to see how important it is to raise awareness for Lupus, simply because up until recently, there was no medications specifically targeted to treat Lupus patients. 

It's been a mixed batched of medicines for other illnesses. For instance: methotrexate. It's used to help control chronic inflammation in patients such as myself. Although this particular medication was originally created and is still used for cancer patients. The side affects can be so severe that instead of taking away the inflammation, it can add symptoms such as: severe nausea or vomiting, lower extremity pain, infertility, and the list goes on. I know some of these symptoms first hand. Many nights, during the month I was on methotrexate, I couldn't get out of bed due to the extreme muscle cramps I would get in my legs. I couldn't understand why I being given meds that were intended for cancer patients, and were only making me more ill. I went back to my Rheumatologist and asked him to change it, I couldn't handle the side affects any longer. 


Only after doing some reading, did I learn that there isn't any specific medication made just for patients with Lupus. It's quite literally a mix of whatever might work for each person's case. In my case, I found it dangerous, and it was the different steroid injections and pills that helped the deterioration of my hip joint. Sited from Lupus.org, there recently was an announcement of a new drug called BENLYSTA. Click on the link to learn more about. After listening to the announcements, I found that even though this is a medical break-thru for treatment. It is not for everyone with Lupus. Although it's exciting to know that advancements are being made, research is on-going, and that there is hope, I fall short on any expectations with this new drug.

Nevertheless, I'm excited take part of sharing and learning more about a the life I have to look forward to with a new walk, and a new hope for treatment meant just for cases like mine!!!

What is Lupus: Plans for a Healthier Living

For those reading my blogs and aren't entirely sure what Lupus exactly is, my apologies for the delay of giving an explanation to what it is. 

"Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body". (Sited from www.lupus.org)

So now that that's said.... What is the best way to get this disease under some kind of control? For 5 years, I've tried so many methods that could ease my symptoms, or even put me in some kind of "remission". Unfortunately, I've had very little luck, and I am once again, embarking in another research.


So the first thing I'm going to look up is Diet. It's said that a person with Lupus can actually maintain a healthier lifestyle by being careful of what they eat. Of course weight plays a part, but the actual foods you eat can affect your joints in a profound way. There's certain foods that act as a trigger for inflammation and other symptoms. For me, it's particularly difficult to try to filter out what's good for me and what's not. The reason being that as a Puerto Rican, my family eats large amounts of pork, beef, and chicken. Though chicken is fine for me, pork and beef (or red meat in general) aren't so great. Also, I personally love a large variety of cultural foods, mainly including vegetables, some good, some bad!
Now the following list are suggestions to test yourself with, and to be mindful of. It does not mean that everyone with Lupus will have the same positive or negative reactions to these foods. Though, there is evidence that these foods can affect you either way; the best way to figure out what could be your trigger(s) is to partner up with your Physicians, and by paying close attention to you body after every meal. Some trigger examples are: some legumes, especially alfalfa. 
You might to want to also look out for: peanuts, soybeans.
For people who are sulfa sensitive, any vegetables that contain sulfa, are added to this list. 
This includes: brussels sprouts
It gets worse for people like me who love, love, love caffeine... it's heart-breaking to say that coffee, tea, and soda are a must get rid of item......not to mention the obvious.... too much alcohol.
Refined sugar is also a to be watched item, although it seems like almost everything contains every kind of sugar..... Theres a surprising note that I found out about refined sugars, which is that it may inhibit the immune system's the ability to fight against disease. 
Again, I emphasize that what's listed about are suggestions and not prone to be the case with everyone. Planning a nutritious diet with your physician is simply the best way to go. 
There is definitely much focus, dedication, diligence and strong-will to uphold in getting into that healthier lifestyle. Something that can do wonders for the symptoms we Lupus patients live with each and every day.

Far from the Big City, There Is A Sweet Couple With Loving Devotion

Being here in the rehab center, there's all types of personalities and characters I've come across. The particular rehab I am staying at is not like the ones in New York, where they may have several floors for the numerous groups of patients within a category for the different kinds of injuries. In New York, you'll even find different buildings, separating the elderly from those not quite consider "elderly". Here, where I am currently staying in Florida, there is no such thing. The closest place I would have to travel for a facility that might house patients within the category of either my kind of case and/or my age, is an hour away from my home here. Thus, the rehab center where I am recuperating in, is actually doubled as a Nursing Home/ Rehabilitation Center. I am interestingly the youngest patient they, I believe, have ever had. So fitting to my unusual story! As you can imagine I've been quite the "celebrity", not just with the staff, but even with some of my fellow patients. Whether a small "how are you today?" or sideways look of curiosity, or just a pleasant good day nod; it's all been a little amusing and inspirational. To watch some of these folks be dedicated to getting well and back up on the own, I have to stop and imagine myself at there age, wondering if and when I reach that point in life, who will I be and will I be this strong?

That thought gets interrupted by the site of this one couple. I don't know their names, and I don't know why the wife is here in rehab other than she might've injured her arm. But the dedication and the devotion her husband displays is absolutely touching to my heart. As she wearily at times, does her therapy and does what she is told to do, he patiently sits next to her, and smiles. He speaks with her, encouraging her all the way. On days he doesn't sit in on our group therapy, he awaits her at the door, and walks her to her room! My, oh my, what a wonderfully blessed woman. To have a man who spends his days walking up and down these halls, attending to his wife's every need. Whether he is arriving to see her, or he is fetching a nurse, he is always there for his wife. In sickness and in health. She leans on him and does not worry about him coming to see her. She is quiet and has a very calm aurora. Again, I don't know their personal stories, but the one I've watched here has made me hopeful that there could still be such a beautiful devoted kind of God's Love between man and woman.

Progress

So, it's been 3 weeks since surgery and I'm slowly progressing from the walker to the cane! Still a bit of work even walking with the cane. I think I'm so anxious to get walking normally. Recovery is so self-strengthing in so many ways. Body, Mind, & Spirit. As each day comes and goes, I think of all the things I want to do, that I couldn't do before, and things I wanted to do and didn't apply myself to do it. I find that as I get stronger, my confidence is also building up. So everyday I'm deciding on those things I plan and intend to do that will only make me stronger.

It's sometimes easy to be embarrassed by the fact of being so young and having such a medical history as I do, but then again, it's accepting that this is the life God gave me. Who am I to argue it? I'm just grateful that I am breathing and that I can function on my own. I am proud that I am a miracle of God's grace. That is the humble fortitude that carries me thru pain of healing. Positive thinking can take you so far. Maintaining positive actions, people, thoughts and prayers are also what contributes to willing myself to get up every morning and out of bed.

Some days are harder than others, but I can reassure myself that pushing forward will lead me to where I want to be. That healthy, happy, strong woman who doesn't let anything keep her down!

What's good and what's not good

It's a well known fact that no matter what event is taking place, when you're in need of focus and concentration, the last thing you need is stress. Sometimes the event itself can carry stress of it's own and any added frustration is just not healthy.

Surgery and recovery obviously comes with plenty of stress and worry of its own... so to have any outside annoyances is completely unnecessary and detrimental to a good and productive recovery. Unfortunately, for me it comes with the territory of dealing with family. I don't know why or how, but the ones that should be there for you the most... sometimes lack and make it difficult. What some people, whether friends or family, don't understand is how unwanted and third party stress can negatively affect a sickly person. The other day I was just out of my mind with the nonsense people bring to my door, it had me in such a miserable fit, that my whole body ached. Not just my leg, but my shoulders, my head, my back. I had such a fitful sleep, tears and all.

Word to the wise.... Be sure that when you are going under any medical procedure or ordeal in general, that you eliminate any possible cause of stress or anything added that is absolutely unnecessary. You, as the patient, need to be clear minded and calm, relaxed and concentrated on the task of getting well. Not down under! Remove any sources that could bring you depression. It's simply not healthy and not what your battle should indetail. At the end of the day, it's about my well-being. My capability to continue on with the struggles of my own life. Whatever God may allow to come my way. Any negative and mal-intented words or actions, are not welcomed. Those fights and battles are just a foolish waste to time.

Be healthy, be good, be wise, and let recovery take you to a better place where a stronger you awaits!

Some Days Are Rough

One of the worst things about recovery... is the pain of recovery. Whether it's your incision healing and itching and you can't touch it. Or building up your muscle strength when you feel like you have nothing there. It can even be the itch on your pinky toe that you can't reach for the life of you... it all can be frustratingly painful.

Last night, I believe I suffered what could have been a spasm. Somewhere low in my back. I awoke with such alarming pain in my right hip (when it's the left side that was operated on), I was sure something was wrong. After a terrible night's sleep and extremely sore therapy... I was all to happy to go back to my room and let my body relax.Therapy has been great, and I've been moving along pretty well; but the soreness that the week has left me in, was almost too much to take today. Thank God it's Friday and I can let my body relax and tend to it's own. Don't get me wrong, of course I'll stay active and do my own exercises, but I know I can take it a little easy. 

One of the best things about recovery, is the people who give you an iron backbone of support! I couldn't thank my friends and loved ones enough. They have been the will in me to get myself to a better and improved Jen. They are my inspiration to be strong and feisty, and they are the reason I continue to carry a smile no matter the pain or hardship. They are always there for me. Following is a beautiful note a very good buddy of mine wrote just for the fighter in me!!!

Title: Purple Fighter:

The passage of time has brought us together. Friend is what we are; overtime, our bond has grown thick like the chain that keeps us linked. When I first met you, I didn’t know anything about you. The seasons flew by and here we are, friends for life. Your struggle is bearable yet, torture. I understand your pain, albeit, I see light at the end of your tunnel.

You’re warm and cool like the colors red and blue, respectively. Blended together, makes an interesting compound color. It makes sense, considering that is your favorite hue. Purple is well imbued in your veins. You’re blood stream is bright like the birthstone to your birthday. The appealing color is uplifting, encouraging, and creative to no end. You are spiritual as well, possibly see more than what’s within. I suppose it was heaven sent. 

A product of an environment that stands under the shower of a disease that you didn’t ask for, painful as it is. Yet, you still remain strong and don’t let it bother you at all. I can see it in your eyes and posture, treating it like another day in the life. With short stature and hidden muscles to my surprise, you treat it like another day, another fight.

She is the purple fighter! You fight with fists held high, eyes stern with a gaze that pierces through your enemy’s skull and possibly through the wall. With grace and mental toughness, she has the capability to fight with elegance like a purple flower that shines under the sun. No matter the weather, rain or shine, stand tall and head held high under heaven’s eye. 

“Determination” is the key that unlocks the door to her strength, such a powerful tool that is the source of her panacea to this arthritic leech. Fight hard and keep going. If ever you falter, get back up. You have my support and others as well. Get well soon and of course I bid you adieu. And one more thing, “Together we will find a cure! That is what my wrist speaks in potent volume.

Written by: Jeffrey Lescouflair

Needles & A Walker

This morning, while taking a shower, I checked all the bruises on my arms. I can see that some of them are finally going away. One thing that I'm sure anyone, old or young can relate with, is that when you're in the hospital, it's like an attack of the needles. No one likes needles, and it's worse the second they might think something else is wrong with you other than the reason you came in for. One night, I got stuck 6 times total in both arms, just because they couldn't find a good vein for the contrast they use when doing a CAT scan. Mind you, I was already being stuck every morning at 5am for regular blood work, for a whole week before. It almost becomes torture. How terrible does it look when you have a 28 year old woman start to cry every time someone with a needle comes in? Did I mention I was getting those blood thinner shots in my stomach everday?

And then, there is the conquering the Walker. My body laughs at me everyday I get up and grab a holder of a multi-grey walker, with bright yellow/green tennis balls at the bottom of it. My body tells me everyday: "this is not natural... what are you doing holding on to this thing. Let it go already.. you can walk with out it... You'll be using it in at least 40 years, what's the rush?"
And then my injured side responds back: "what are you stupid? Let me go, and we're all going straight down to the ground. Who cares how old you are... You can't walk straight yet... stop worrying it's not forever. Simple as that."
And simple as that, I hold on to this aged device as if my life depended on it... which in a not so dramatic way it kinda does... Sigh..

Well good thing is that the bruises are finally fading, and humble pie has become my daily dessert.

Total Hip Replacement

Hi, I'm Jennifer, and as of today I have been living with Lupus for exactly 5 years this month. I'm 28 years old, and this is my day-to-day life with lupus.

I have the arthritic kind of Lupus. From my neck down to my feet, I have arthritis in all my major joints. Osteoarthritis to be exact. This coming Monday will make 2 weeks that I received a hip replacement because of the extent of damage the last 5 years has taken on my leg in particular.

I was born a sickly baby as it is... Having transposition of the heart, done with a muster procedure, and later having a pacemaker placed when I was 13 months old. So hospitals have been a constant thing in my life.
There was a time I was so happy to not be at the docs office more than twice a year... When I was 23, and once again going thru something that doc's had no idea what to do with.. It was quite devastating. So many of my hopes of medical miracles went right out the window. I suffered so much physically that I was sure God was punishing me for not obeying Him as I should have long ago.

I find myself here at 28, thankful that God is still by my side. Giving me Super Woman strength to endure all the things I've endured so far. I'm re-learning how to walk, but you wouldn't know it by talking to me or even looking at me. I stand a tall 5'3, with my back straight; legs ready to go wherever my feet are ready to take me.

Today, I didn't get group therapy, as they didn't come into the rehab center I am currently staying in. But that didn't stop me from getting up and doing the exercises myself, and then going for a walk in the courtyard... This is who I am... never sitting still. Never allowing the hindrances that life throws at me to hinder me. I keep moving forward. No matter what.. My faith is too big, too deep, and too powerful to not prove that I am strong, and that God has great plans for my life!