Living A Winter Life with Lupus

  Around this time last year, I mentioned in a previous entry, that I was having a major issue with hair loss. A full year later I'm at the salon getting my hair "did" and not one bald spot can be found!! I'm a super happy camper!! It was rough dealing with so much hair loss and finding different methods of fixing it. I began taking the vitamin Biotin along with my other vitamins, I started doing deep conditioning treatments at the salon regularly, and buying hair products that targeted hair growth. I also started eating better, and by that I don't just mean eating more greens, I stopped eating fried foods, I stopped drinking sodas and juices that contain ridiculous amounts of sugars and chemical ingredients, and I stopped accepting processed foods as the cheapest easiest thing to buy.
  Foods and vitamins are something I have constantly mentioned all through-out my blogs and it is because it's incredibly crucial for the maintenance of my body, as I do my best to stay resilient against this battle with Lupus. I've also started eating less red meats and sticking more to fish and chicken. I've begun choosing ingredients more wisely by watching the kinds of things that it's made with or from. Little changes such as these can go a long way. Of course the increase of greens and fruits are a must, and I have even tried a small amount of juicing. Be wise with what you put into your body and your body will take notice of your efforts.
  Along with the decrease of hair loss, though the very cold winter air is just beginning to settle in, and I do still struggle with some achy hands, legs and feet, I can happily announce that I have had no swelling or inflammation in any of my joints. What a blessing!!! Last winter, I was still dealing with some minor swelling in my hips and in my knees, having to keep a knee brace on from time to time. Thankfully, I have not needed anything this year, but some warm long johns!
  There are still some Lupus related things I deal with, considering that I'm not on Plaquenil or any other medication for anything at all, I am very grateful that I am bearing every and anything that comes my way. Things that still come up... are "that time of the month" sort of issue. It seems that I get slight inflammation, though whether it's my bladder or my tubes, I couldn't be sure. Hopefully the New Year will bring health insurance and I can go for a thorough check up on that. Won't be fun- I imagine- but what can I do? Medical advances are miracles and I am blessed to have those options. Which also leads me to mention that unless I check in with a high risk Obstetrician, carrying a full-term pregnancy isn't something I can do without the help of God's graceful hand and the medical advances of today.
  I also know God hasn't given me a single thing that I cannot bear! He has made me strong even in my frailest moments and I know that with His strength, all things are possible! He is mighty and able, and so has He made me!

Stay Healthy and Be Well!
Thanks for staying with me through my journey!

Fighting Pain

Hello Folks,

Although I've been a little MIA... I have much to catch up on... But for now... Here's a poem I wrote this morning... Still fighting that Lupus fight!


Fighting Pain:

PAIN! You will not rule over me today.
Make me miserable- Go ahead- I dare you!
You will not keep me down.
You've done your worse before.
The aches in my writing wrist-
I will bear it thru my scribble.
My tired mind-
I will focus harder.
My weary body-
I will stand all day if need be.
In the name of Jesus- Get away from me!
I stand protected and you cannot come near.
Lupus you have no control here.
Be gone from me!
For I will fight against you til the end.
My life is not yours to claim.
I call you out will all my strength.
You have no home here.
I am settled in my painful peace.
I know not failure in my endeavors,
Because you are just a passerby.
I look to conquer your distracting manners
And bring God Glory for His healing works,
In every breath I take for all the days of my life.
Lupus you have no reign here.
Drive away- for the day is mine.
Despair- I rid myself of you
For your presence is never welcomed.
Pain... You will not rule over me today.

~JM~

Lupus Warrior!

So as the New Year takes off with great progression in my life: official member of a new church home, a new relationship, new writing material, finally back to school, amongst other wonderful things; lupus has once again taken it's brutal attack on me. Just when shortly after my doc visit and with comforting reports from him in regards to my discontinuation of medication, I found this.......
Woe Is Me!!!! I was so glad that my hair had stopped falling out finally!! And then this discovery broke my heart. I don't know why, but I hadn't noticed my hair was still falling out so much. I've only noticed the amount coming out in my brushes. Once I started looking for more spots, I realized the whole top circumference of my head is thinning out... I had stopped taking Biotin for a while, however I've gotten back on a stricter routine of taking all my vitamins without missing. I was suggested to see a dermatologist to get a topical steroid cream for it. But if I can help it, I'd like to try all natural remedies. So back on to research!!! It's truly discouraging to feel that when you have finally gotten things a bit quiet and in control, this miserable disorder decides to attack yet again. I can cry all I want, but it doesn't do me any good other than release some frustrated emotions. Its incredible to watch my body go from relief of one symptom (such as less fatigue = more energetic) to the appearance of another completely different symptom (hair loss & rhino skin spots). It's a constant rollercoaster. It's challenging because considering my medical history, the last thing I really want to do is resort to poisonous medicine. Vitamins are my safe haven, but I wonder, what else can I add to my regime? My search goes on in looking for alternative remedies and to seek out the natural way I have not tried yet.

I know that the start of this is organization with myself and my schedule.. My one on one time with myself. Which is something I've begun to become more disciplined with. Along with that, I simply take to my support team. Those people who hold me up when my struggle threatens to make life and cures hopeless. Even the social media has been inspiring to me as I find the magic of Hashtags connected to words like #LupusWarrior, #LupusFighter, #LupusAwareness, etc.

This year, I plan to attend events and participate more in the fight against lupus. I need to be more aware, to spread the awareness, to make my mark, my dent on this life controlling disorder... I need to find another way to fight back and harder than just maintaining!!! I ask you all to join in, whether it be by wearing purple, or spreading the word, or even asking questions and gaining information! It's become an epidemic and something needs to happen. Something needs to change!!!

Thanks for taking this journey with me!
God Bless & Be Well!

Hello 2013!!

 

Happy 2013 Folks!! Hope everyone has had a joyous holiday and is refreshed and rejuvenated to get back to work with vigor!

Now that we are in full effect with the winter season upon us..... I'll tell ya....Lupus is my steady daily struggle!!!! I've gotten back on Aleve as often as 2-3 times a day for consistent aches and pains in my joints and muscles. Vitamins are still the same, tho I'm considering on including Pro-botics, which is good for both the digestive system and the immune system.
I've noticed that my body craves veggies and fruits if I go too long without eating them enough. I'm still a pretty good health nut when it comes to food. Buying more organic products and always fresh products over boxed or frozen or canned. I'm ever thankful that I haven't had any major inflammation. I have noticed that my right hip has become weaker than I'd like to admit. Which means a check-up on that is on it's way. Hopefully there's nothing of big concern going on there... Surgery almost 2 years after the 1st hip surgery is not something I'd like to see so soon. Another symptom I have noticed that has reappeared with the winter weather is severe dry- nose, where I tend to get mild nosebleeds. There isn't much I can do about that other than staying hydrated and applying a little bit of vapor rub in and around my nostrils. Also, a rhino-like rash, mainly on my elbows, but it has appeared on my face as well. Doctors say its just a case of psoriasis. Unfortunately the medication for it is quite expensive and I've only been managing with Aveeno and Oil of Olay lotions. Grateful they give some kind of comfort, however I must keep a constant maintenance of applying it. Some more serious symptoms I've noticed that have return is depression and fatigue. And a quick reflex to stressful situations where I normally can handle better. Unfortunately I believe these might be due to some major hormonal imbalances as well as having discontinuation of my maintenance medication (Plaquenil). I feel that the side affects of Plaquenil over took the benefits of it... being the reason of my discontinuation of it.

Come next week, I will have an appointment with my rheumatologist, where I will discuss with him all of the above. I am wondering if perhaps there is a variant of the previous med I was on that could work with less side affects. Also, I am wondering if a hormonal substitute all together will prove to be my problem solver all together. A positive change I can happily report is that my immune system seems to have gotten stronger. I've had 2 colds over the last 6 months and although I was thoroughly ill, my system fought against it so much quicker than ever before. Between taking natural and organic over the counter medications, getting sufficient rest, plenty of liquids, and healthy solid food when able, my recovery time was much shorter and my energy levels were not as depleted as years before.  I attribute it all to keeping up with all the old fashion remedies and taking my vitamins. May sound a bit childish, but parents knew what they were talking about!! Overall that is definitely one thing I can be grateful for... improved recovery time!

Coincidentally, I had drafted this first part of my blog post, and later on took quite a fall while at work! I landed no where else other than my operated hip/leg. I banged my left knee pretty good, and the caught a decent amount of impact on my left wrist as well. As this being the day after my fall, my pain levels have gradually gone up and I am not a happy camper. I've been dealing with it as best as possible. Getting as much rest as I can, making no sudden or sharp movements, taking Aleve, and putting hot pads along my injured areas. I know for certain that my hip and thigh are bruised. Awaiting my next appointment with the docs, I'm sure they will send for x-rays. I am nevertheless thankful that I can walk with ease. So far within the 2 days of my fall, I haven't had any severe swell ups or inflammation, and that in itself is a blessing! Falling down is the one thing I have dreaded since my surgery. Not something someone usually thinks about all too often. But knowing how fragile the body can be, knowing that balance isn't always my friend, and the possible extent of injury... well those things are not to be forgotten so easily.

Lupus is like anything else that consumes your life... It's something to be aware of, cautious of, and ready with a back-up plan if necessary. My prayers for health are constant, as is my intake of anything beneficial, that will make me feel better as I take each day as it comes. Some days I'm strong and energized enough to fight with all my will power, and some days I fight under the covers getting as much rest and sleep as my body demands for. I can see myself staying away from as many winter days as possible, sometime in the future. I think that will be key to keeping up this exhausting fight against lupus.

Thanks for taking this journey with me!
God Bless & Be Well!

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!