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!