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.