Finding Love in Lupus

Hola!!!

My brief hiatus has been due to not having much to report!!! Which has been great! I've been busy living life to the fullest! Enjoying making memories with friends and family. Still dancing around in heels. I've made major changes to lessen some stress that was beginning to get to me and affect me both emotionally and physically. Remember that a build up of stress or even a sudden arise of it can really bring you down, your body feeling it as much as your mind might. So I changed jobs, living quarters, and even took some time away from a bit of family and friendly drama. I've done some performances of poetry. Investing time in many projects I enjoy. Even keeping to some quiet time with my faithful dog Bella. 

Stray Away News & Update:

Recently, I've been so caught up in feeling good and feeling quite "normal", that I began to slack off a bit. Starting with not keeping up with my vitamins, not exercising, even giving up on my beloved healthy foods!! I pretty much broke my routine. Which of course as now caught up to me. My symptoms have returned in the form of weakness, constant tiredness (despite the hours upon hours of sleep I now get), headaches, and body aches. Thankfully, I haven't had any major inflammation in my joints, lost of appetite, or weight! Thank God! The memory fog tends to still sneak up on me  sometimes... But I do my best to focus and leave myself any reminders I might need along the way.

Well it's time to whip myself back into shape! Which I pray that will ease the consistency of my current symptoms. As much as I should be used to living at the doctors office, do you ever feel like you have to brace yourself for these trips? In my case it's never just one visit, never just one doctor, never just one test or exam. Be as it may, I do want to gear this post toward something a little bit more personal. Something I wasn't sure how to face until now....

The Emotional Toll:

In the initial time of my illness I was with someone whom I thought would be by my side thru and thru. Unfortunately, along side my drawn out search for some kind of recovery, my messy and hurtful my break-up (& thus a divorce) left me more battled-ridden than I could have ever thought it would be. I was heartbroken and fell into what I call a silent depression for the last 3 years. Though I have an amazing team of supporters, loved ones and friends... I still felt abandoned by someone I trusted with all the keys to my very private life. I have kept high walls around my heart and as far away from that kind of hurt as possible. I have been viewing any relationship with any potential interest- in all the wrong ways. Sadly, I just found this out. Enter into my newest battle field......

I recently met someone that quite seriously interrogated me, before deciding he wanted to show his honest interest in me. Over these past weeks and months we've gotten to know each other in a way that I haven't experienced in a very long time. Patience in the most profound manner, thoughtfulness, and constant humor (because laughing is one of life's natural healing medicines). I've shared with him my present condition and a little bit of my background. Enough information so that he is aware of it. However, in the last two days I realized that I have been allowing Lupus to be exactly what I just mentioned...."my present condition", so that anyone new in my life would only be "aware" of it.

I've had a very self-reflecting-perspective-reality-check. And I don't know if anyone else has gone thru something like this.. but what I was doing was this... Accepting that I have Lupus only because I have to deal with it. Not because it is a part of me.... My very smart boyfriend has caught on to this. Calling me out on keeping him at bay from my inner struggles with lupus. I didn't want him to worry, so instead I took it upon myself to hide my difficulties as to not hurt him and hopefully be accepted, or as least that was my logic. I did not want to put him in a position where he might feel uncomfortable or even worse...leave. I have been so afraid of someone walking out on me in my greatest moment of need- again, that I lost all trust for any man willing to get close to me. I have such a particular routine to maintaining my health. I didn't want it to interrupt this bit of happiness that's come my way. Foolish me, so caught up in my own despair, I couldn't get that what this darling man was trying to tell me....

Back To A Love Filled Reality:

That my battles were no longer mine alone to fight! If only I would allow him, he'd be right beside me holding me up and fighting to win against Lupus every step of the way! How foolish I have been to think no one would take me as I am!!!!! Lupus is not all of me, but it has taken total control of my personal space! There's plenty more to me and I hadn't realized what happened within! I have spent so  mush time focused on gaining control over this unpredictable "disorder", that it has taken over my emotional state. I know I have hard and high walls up to protect little ol' me, but after a very intense and sobbing- filled discussion about the lupus side of me, I saw that I made it so personal because of all the hurt at the very beginning of this 6 year journey; I learned that just because one person was too weak to deal with a difficult curve ball that came our way, it didn't mean that I died... Or that I would have to live and die alone simply because I have lupus. Whether physically or emotionally. It just meant that God had a different plan for my way of living in comparison to most. I have used my experiences as an educational outlet. Attempting to figure out all the changes my body, mind, and (apparently) my soul has gone thru over time. 

In reality I should have accepted myself as I am. Rather than trying to deal with life and the uncertainties of how lupus will affect my personal connections. Even if that means that having Lupus is a part of that connection. Anyone not willing to accept that is therefore too weak to be around me or in my life. No negative energy welcomed here!! Somehow, this man is willing, he's accepted me and truly loves me unconditionally. Thankful to God every day for one another. In the past six years, I haven't accepted nor really had a man tell me that I wouldn't be alone anymore. In all the healing I have prayed for, God chose to bring me a blessing that was only a silent hope within my heart. A man strong enough to be there and stick by me when I am too weak to be strong on my own. It's been a lonely road to some extent. Though I am overly abundantly blessed to have friends and family who continue to be a great help and support. The strength of a man holding me close when I am in physical pain, just can't quite be compared too.

This Is Who I Am:

I am a survivor since the very moment I was born, I have always fought to survive and I will always continue to do so. Nothing will ever be stronger than my Faith in God. That and the loving hands and hearts that hold me up in prayer everyday whether I know it or not. I do know that God answers prayers. The plans He has for me are still so great and grand for me to always understand. I continue to stay open about life and for God to fill me with the intricate details He gives me to search out and learn. I am in awe of the fine print having Lupus has brought to my eyes, as I learn so much more about myself and about life around me. It makes me feel like I am living life on a whole new level. Because this chapter ends with me still Winning against Lupus.

Be Well & God Bless!

Living An Awesome Life With Lupus

Hello My Dear Readers!

   It is a glorious summer's day and I am on lunch sitting on the roof-top of my company's building, soaking in that bright hot sun under a breezy shaded area. Grateful for the warmth that envelopes me, I think of how much has taken place over this past year. This time last summer, I was still limping painfully around shortly after my hip replacement surgery, trying to get back into balance with the chaotic New York City environment. Still trying to get my erratic Lupus symptoms under some kind of control, having made some goals, and working hard to reach them; post-surgery body maintenance proved to be difficult, sometimes discouraging, needless to say painful, but ever strengthening as well! Allow me to take the time to say that til this day, I still owe so much of my progress to those Nurses, Doctors, Friends & Family that have supported me thru-out my journey and have continued to challenge me, encourage me, and stand by my side in times of weakness. Thank You Loved Ones!!

    Today, I am off all pain medication and only take Aleve if pain ever gets to much to handle without it. My med list consist only of Plaquenil, Calcium /Vitamin D3, Iron, B-12, Biotin. The rest of any vitamins or nutrients, I obtained them naturally, for example: fiber and protein enriched foods, plenty of fruits and vegetables. I try to stay away from foods that are triggers to Lupus patients like myself; such as shady vegetables, overly acidic foods, red meats (moderately), wheat, and soy. Since I have begun maintaing a healthier food intake, I have noticed a considerable change in my body. When I slack off and eat those unhealthy fatty and greasy foods, my body tells me almost immediately to get back on track. Whether by stomach aches, sluggish overall moods, or even nausea over some things, my body knows what will make it feel better!!!  My daily activities are as "normal" as anyone else's! I do not have so much trouble getting up in the morning anymore. As long as I have had the appropriate rest the night before, I can get up with no acheness or stiffness; mentally my mind is clear and sound, ready for a new day!!! I am energetic, my speed and pace in walking have surpassed my own expectations! I am even running a full speeds!!! Though it's not recommended for me to start running as a hobby or sport, the fact that I can sprint across half a football field... screams great physical accomplishment for me!! My precious Shetland Sheepdog is as grateful as I am, now that I can run and play with her so openly!
 One of my more personal joyful goals were to get back in heels and dance pain-free... and thus I have reached that goal!! I am back in dance-loving heels, making circles around my friends when we go out and celebrate the simple things in life!!! I am as active as can be, traveling about the city as if there was never anything wrong with me to start. I can keep up with my busy city life better than I think I ever have! It's amazing that with all the pain and struggle I have encountered, I can proudly stand here today with no limp, no pain, no twitches, or such and say that I have endured another medical wonder! I am ever grateful for the healing hands of God above.

Fine Print:
    Though it may sound as if I have been cured of my Lupus, let me assure you that though one day I would love to report this possible great news, I am not there yet. There are exceptions and I still have bad days as anyone would. What I mean is this:
1. Where I once used to loved the rain and played in it and all, nowadays, not so much. Rain, humid weather, and the moisture pressure in the air before it actually does rain, affects me to the bones. I become very achy, extra tired and at times stiff. Tension often builds up in my muscles and often I don't feel relief of it until it rains and the weather lightens up. I do have my home remedies to ease the discomfort. Hot showers, keeping warm if it's chilly out or keeping cool (comfortably) when it's warm out. These are usually the times I take up on some extra rest and catching up with Netflix movies!
2.  Another symptom I still am plagued by is brittle hair and hair loss. I have managed to get some control over the hair loss by taking the vitamin Biotin, which promotes healthy hair growth as well as buying topical products that encourage hair growth. I stayed away from anything that might dry it up and try to keep my curls as natural as possible when styling it. However it does tend to get expensive at times and it can be frustrating not finding specifics products nearby.
3.  And then there is one of the most dehiliblating symptom for me yet, it is known as "Lupus Fog". It's the memory loss that occurs from time to time. It's been a humbling and at times embarassing experience when friends recall conversations, and I respond back with a blank stare, not remembering what they are talking about. Being reminded that I don't have the sharpest memory is often saddening to me... There's times that I can remember every little detail about a memory of long ago, but can't remember the person's name standing right in front of me. I've only just begun to tell people of my hidden symptom as it as begun to show more often than not.

    Overall, depsite the difficulties I continue to manage with, I feel better than I have in many years! My spirits stay positive and I keep my body motivated as much as possible and within reason. I have my great days and I have my bad days. I'm at a point with my illness where I'm not so much the odd ball anymore. I go about my day to day simply maintaining my health like anyone else would. Lupus is a very loud part of who I am, as a woman who hasn't reached 30 years old just yet, but has the medical history of a lifetime. I am not so shy to share my story and I've come to the conclusion that it's best to let people know.. it's how we learn and educate one another. Life is still a learning and growing process and the only thing that I can do is make the best of anything that comes my way!

1 Year Ago

Hey there folks! Celebrate with me today as it is the one year anniversary of my total hip replacement! How am I doing??? I'm doing fantastic!!! My pain is at an all time minimal. So much so I am off all pain meds. I've met and am still meeting all the goals I set for myself at the start of this ever painful journey. My Lupus is still active although my bouts of inflammation have almost diminished. I've discovered other symptoms and side effects. Such as nose sores, a cystic break-out on my skin, and hair loss. Getting to know my unpredictable body behavior has become key to maintaining some kind of control over my symptoms. I keep close communication with doctors accordingly and do not hesitate on treatments. Of course I research all options when it comes to treatments however, both medically and naturally.

My check ups at the rheumatalogist and cardiologist, amongst

other specialists, have been baring better and better results. My heart is well adjusted and there are no signs of any concerns. No fluid build-ups, no pulmonary hypertension (which was of great concern at one point in time). I keep a tight regime of  particular care for myself, which includes: maintenance medication (Plaquenil),vitamins, consisting of Iron, Calcium w/vit D3, B-12, Biotin (a b complex vitamin for hair, & skin), specific hair products from thickening and growth, healthy foods, staying active and plenty of rest! Always keeping faith and patience as my companions and having a great support system has also contributed to my successful recovery.

I no longer walk with a limp, a cane, or a walker! In fact I am back in my heels!!! It was one of my goals and I got there. I find that with continual stretching and exercise, I've become more flexible than I have been in many, many years. I am able to sit Indian style (my legs crossed over each other), & I am able to bend my legs at greater angles. I add new little things that I have not been able to do in so many years, that it leaves me humbled and grateful to have the chance of being a living testament of the impossible made possible thru medical advances and my faith in God. Be inspired to live a life where no matter the obstacles laid before.... there is always a way to conquer!

10 Months Post-Op

Hello Folks,

It's been 10 months since surgery, and I've had quite the recovery and some frustrating results. Settling back in the busy city was exciting. I tested my new strength and enjoyed the absence of pain. Though short lived as it was. In due time, I realized that the effects of having stopped all and any medications soon began to kick in. I began having reoccurrences of some major flare-ups. As my operated leg (my left side) recovered, slowly my right leg began to swell up and ache as painfully as ever. Keeping up with stretches and the hot/cold therapy just wasn't enough. So I knew I had go to back to my rheumatologist and start once again on getting control of my flare-ups.

Now here is something important I've learned about what doctors I chose to see. My previous rheumatologist was a good doctor and had helped me through-out these last few years. We were able to cancel out many treatment methods that did not work for me. Although, we hadn't found a method that did work, he was caring and patient with me. We got along well. However, once I left to Florida and dealt with some of the doctors there, and to account for all the research I did while I was recovering, I realized that my NY rheumatologist and I had come to a sort of short stop with finding a treatment that wasn't trial based. Something that my body would react to in a positive healing way. So upon returning back to NYC, I decided that I would go for a second opinion. And I'm glad I did. Now this is not to say that my original doc wasn't good at what he did. Unfortunately for me, I found that we had just hit a dead end. There wasn't too many more options other than exhausting previously used treatments, and that old saying: "If at first you don't succeed, try try try again". I got tired of trying with no results.

Upon seeing a new doctor, I also realized that I felt more comfortable with an older doctor. He seemed to have a more personal judgement on my case, other than just text book knowledge. And I think that can be essential at times, simply because not all cases are text book cases, and not all treatments work the same for everybody. Also, a more experienced eye might find what a modern eye might miss; solely because they are looking for the modern changes that an illness can currently be noted for, not what the origins of what the sickness can tell. Anyhow, since getting re-evaluated and re-tested, we finally found a name and reason for my miscarriages. I've been given ultimate hope in being able to have a successful pregnancy (when the time comes). And most importantly and excitingly, we have finally found an opening to a treatment that works.

Starting from scratch was the only we could figure a way to get my chronic inflammation under control. I was put back on Plaquenil 200mg, but instead of splitting up the dosage (100mg in the AM, and 100mg in the PM), I take 200mg right before bed now. Though I don't understand why it has seemed to work better that way, I am glad it has taken affect. We also found that I was extremely Vitmain D deficient. So I started a regime of 50,000 IU's once a week for 8 weeks. Thankfully, it was just a little pill that was easy to take. Along side my regular vitamins, which are Iron twice a day, and B12 once a day. Though I must admit I wasn't being very consistant with it as I am now. I was given Naproxen 500mg twice a day for pain. Interestingly enough however, I noticed that Aleve was stronger for my pain that Naproxen, but only when my pain was closer to a 10 (10 being as bad as it could be). As my pain slowly diminshed and it became more of an achiness that pain, Naproxen did the job just fine. Last, and least of all my favorite, I was given an extended period of time on Prednisone. Combined, all these medications and vitamins worked well. As long as I am consistent with it, and following the directions accordingly. I have very little pain now. I am able to bend my limbs much more easier. My energy levels are back up to almost my usual hyper-self. Though my muscles are still weak, and I fear I am a bit too fragile for my liking, I've been feeling great! It's been a long gradual and painstaking journey to where I am now. I still don't consider myself at a 100%, but it'd like to think I am very close to that.


Exercise is a continual thing that is like taking medication. Without it, my body aches more, feels weaker, and falters my energy. Eating habits has the same concept. I've learned to live the active life I love to live,  alongside these critical points. If my body will not produce the necessary elements it needs to maintain itself within it's natural state, then I must provide it from the outside in. So eating right, excising, vitamins and the appropriate medications is vital to my life. It doesn't sound difficult to most, but to some it very well might be. Taking meds, and individual vitamins (outside of a single multi-vitamin) was something I could never imagine having to be "forced" to do for the rest of my life. But then again, I want to be able to see a long lived "rest of my life". So the decision was obvious.... Do what I must to give myself a running chance at having a life I could live to the fullest! And though I'm not a good runner, I've made it back to a place where I can give myself that chance without any hindering pain.

I'm will end with this: Positivity goes a long way, especially when you have something so uncontrollable that can attack you relentlessly. Stay Strong my dear friends!! Because the harder you fight back, the greater the results that will come to be. When it comes to illnesses such as Lupus, where sometimes you never know how you will wake up feeling, it's in all we can do to keep ourselves up, moving, and focused on our day to day lives. Keep a strong support group close by, and be attentive to your well-being.


God Bless & Be Well!

Jennifer