“Whatever Comes I’ll Be Ready…You Keep Me Steady”

My devotional this morning was about being thankful despite  times of uncertainty and pain when dealing with a chronic illness. You many not be living with a chronic illness, but there are many times of uncertainty and pain that daily creep into your life. It seems impossible to find gratefulness when you are in the bottom of the valley without any possible way of escape in sight; let alone being thankful for the situation itself. It doesn’t feel good  continually living in pain and distress. It doesn’t feel good having to struggle and fight, and to continually lose each and every time. What if I told you that you can be thankful, in the valley, the pain, distress, uncertainty. What if I told you that you can be thankful and grateful for the storm.

It seems crazy! Why would I be thankful for having lupus, and what could I possibly be grateful for? I must be losing it right!?! NOPE!! Not at all!! Reading this devotional this morning was right on time. The Lord has really been showing me how to be thankful for my chronic illness.  If I can learn to be thankful for this horrible illness that has left me in anxiety and depression, pain 24 hours of the day for the past 14 and a half years, took away my independence, my appearance, at times my sanity, safety, and everything I knew to be true, while literally trying to kill me, what else is there really to worry about!! I mean really think about that!! The Lord knew long before today what I would being going through. He knew since the beginning that in May of 2000, I would get sick with a chronic, incurable disease. He already made the provisions for me, and provided me with everything I will need to fight long before there was a battle; long before time knew time existed!!!  Just like me, the Lord knew your tears and pain would come. He knew that we both would make decisions that would bring dishonor to his name, yet he made a way for us before we even existed!!

Yes I have lupus! Yes, sometimes it seems unbearable, painful, and uncertain, but I am thankful!!  My fingers are cramping as I type this, and my knees are aching, as well as every other joint in my withered body, but guess what!?!? I am thankful for it!! When I opened my eyes in pain, that was a sign I was still alive!! When my swollen ankles hit the floor and I limp to the bathroom, I am walking on my own unassisted! God say’s,

“Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”  1 Thessalonians 5:18

Nothing is too hard for my God! Lupus is not stronger than my GOD!! Your problems are not bigger than my God! Whatever comes I will be ready!! The Lord has already made provisions for me! He will not leave me to fight alone. Even when I don’t understand, and the world is crumbling down all around me, I will be thankful! He knows the answer, for he is the answer!

“You keep me steady when the sky is falling
And I’ll keep steady after You
I’ll carry on when my strength is failing
Take heart ‘cause You’re with me
So let the sun stop, stars drop, whatever comes
I’ll be ready, You keep me steady
You keep me steady” – For King and Country “Steady”

Brandi 🙂

Facebook: www.facebook.com/TheButterflyStitcher

Instagram: @thebutterflystitch

“It wasn’t easy, but it was worth it!”

I have had several people, including doctors that have told me that I am a very good patient, and that I deal with having a chronic illness pretty well. I am very meticulous about my medication regimen.  I know what medication I take, the milligrams and why.  I ask questions before procedures, and I am not afraid to tell a doctor no if I am not comfortable with their method of treatment.  I have been through a lot over the last 13 years, but by no means was I always this way. It wasn’t that long ago I was in the dark with no flash light.  I have learned to adjust to the “darkness” out of necessity.  My only hope and goal was to LIVE!

Lupus is an unforgiving disease.  You get a diagnosis on Monday, and by Wednesday you barely recognize the person in the mirror. My face became more round  and changed into what is known as the “moon face” with flattened  facial features. Hunger seems to never subside, and it wasn’t long before my  figure started to resemble that of a  spider with a rounded abdomen with arms and legs sticking out. All of this was due to inflamation and  the high doses of steroids.  It was hard to prevent because I was in so much pain just walk to the bathroom, let alone trying to walk laps on some bodies track.  Just the thought of it would make me want to cuss someone out!!

The changes are very hard to deal with. It is no wonder that many Lupies struggle with depression.  How would you feel if you woke up one day and your life was TOTALLY changed. One day you are able to walk, the next day you can’t. One day you can fit you favorite pair of jeans, and the next day  you can’t pull them up past your thighs. One day you can take a shower on your own, then the next day all you can do is sit there while someone you just met earlier that morning is giving you a sponge bath.  It is hard to all take in.  I get a little misty just remembering those dark days.

After much sadness, depression, anger and then acceptance, it was time to deal with my “new normal”. I may never look like my pre-lupus self ever again, but I learned how to work with what I have. My clothes may be a bigger size, and I may not be able to wear my favorite dress again, but I can still rock an outfit with the perfect shoes and accessories. My hair fell out, but my husband hooked me up with a tight cut until my hair was able to grow back. I can’t run the miles that I use too, but I can flop around the pool and still burn a few calories without feeling like I am about to die.  I had to learn I can still be me. Lupus can’t change that. No matter what diagnosis I was given, it couldn’t change my heart, my dreams or my desires.  I can enjoy the same things in life, it just has to be executed differently.  Once I realized that, I could deal with the diagnosis of a disease that may never be cured.  I didn’t get to this point over night.  It was, and still is a fight everyday to not allow myself to become lost in depression and hopelessness, but I have to keep on living, or keep on dying.  With an illness where control is relinquished without consultation, it is the one thing I have control of.

The other thing that I could have control over was my medical care. I researched all I could about lupus.  I learned about my medications and asked why they were prescribed.  To make sure I am at my best, I take meds and I don’t miss a dosage. I don’t put a pill in my mouth that I do not know what it is. When I am not feeling my best, I make sure if I have a busy day, I give my body adequate time to recover so I don’t  spend a week on strong pain meds trying to catch up on my pain. I keep up with new treatments and ways to make my life easier.  I had to become my own advocate. I am the only one who can know how I am feeling.  Sometimes it is a hit, others may be a miss, but every decision is an informed one.  It is talked about and decided by me and my doctors.  I don’t have to agree to procedures that I am not comfortable with just because the doctor told me to.  After all, it is my body, not theirs.

Everyday isn’t always filled with smiles.  I still have some days where I feel a little overwhelmed with the frustration of a body that won’t allow me to do what my mind wants too.  Depression still knocks on my door, and sometimes it is kicked opened without permission, but I know longer feel like I have a hopeless future where I am just existing. Lupus is not my death sentence.  It is up to me whether to keep on living, or to keep on dying.  I choose to live!

 

Check out my fb page at: www.facebook.com/thebutterflystitcher

“Your talking out the side of your neck”/10 Things NOT to Say to A Person With Lupus

Here are some of the annoying things I have heard over the years.

10. You use to be so thin.

(I know…don’t remind me.  *looking at my bulging stomach and yeast roll feet*)

9. You don’t really need to take all that medicine, or you take too much medication.

( I have had people to tell me to stop taking my medicine and just pray, have faith and ask for healing. Ok, I will stop taking it and just go ahead and die. Doctors aren’t of the devil. GOD can provide them with knowledge to treat me. Also, GOD may decide not to heal me. Sometimes we don’t get what we want. You think I haven’t prayed for healing ?)

8. You need to go natural or try this natural _______.

(You don’t know what you are giving me.  Someone was trying to give me some immune booster, not realizing that it would have killed me almost immediately. My immune system is going haywire and attacking my organs willie nillie. Why would I want it to boost me into the grave yard? You are  not a doctor. You don’t know how it will affect my condition.)

7. I have a friend/family member with Lupus, but they died.

(Thanks for the encouragement.)

6. Man, you are always sick.

(Believe me, I hate it more than you.)

5. Are you ok?  Or  Are you getting any better?

( In some instances it is ok to ask how I am feeling, but not when you have the pity face to go along with it.  I will never get any better. I have a chronic illness, meaning I will have it for the rest of my life.  I have good days and bad days. It doesn’t mean I am getting better.  When you see me limping or wincing from pain you will think I have one foot in the grave again.)

4. Have you ever tried to ignore your pain?

(Believe me, I ignore pain everyday that’s why I am able to function. You have no idea.)

3. There’s nothing wrong with you. It’s just in your head.

(Now I am crazy?)

2. I understand what how you feel. I have arthritis in my _________.

( You may think you are making me feel better telling me I am not alone but you are minimizing my pain by telling me you deal with it and you are doing just fine.)

1. Well you don’t look sick.

( Just because I don’t LOOK sick doesn’t mean there is nothing wrong. Maybe I should limp a little harder or start foaming at the mouth to look more believable.)

Brandi  :/

 

Check out my fb page at: www.facebook.com/thebutterflystitcher

A Pitiful Case of the Pits!

Sun and Moon clip art

Sometimes having lupus is the pits!! Lately I have been dealing with  sun-sensitivity, a horrible case of restlessness/agitation and daily bouts with insomnia.  I keep telling myself I have been through worse but it still hasn’t changed my mind about the fact that, sometimes having lupus is the pits.  I am very agitated  about being agitated, to sensitive for my sun-sensitivity and  to sleepy to do anything about it!!

Lately the sun and I have not been getting along.  Even a few minutes in the sun and I feel like I have a sun burn with horrible fatigue and joint pain.  I have always known about sun-sensitivity and lupus but I never had any problems until this year.  I think I am making up for lost time or something. The WRATH is upon me!! Most days I am held hostage in this house trying to duck and dodge any kind of sunlight, which adds to my frustration dealing with the restlessness and agitation because I am stuck in this house.

So now it is 10:00pm. I just finished pacing the hallway for the 10th time tonight. It is going to be a long night. Of course I am not sleepy. I am wide awake, restless, agitated with a sunburn that doesn’t exist. Yes, sometimes lupus is the pits!!

 

Check out my fb page at: www.facebook.com/thebutterflystitcher

R.I.P (The Death of a Friendship)

It is starting again. Me and my best friend are at an impasse right now.  It seems like all we do is fight. I have tried reasoning calmly but it seems that nothing is getting through. I miss the time we use to spend together. It hurts my heart that we can’t work this out. What do I have to do? I am tired of begging and pleading for some reciprocity.  It seems like I am always at the losing end.  I have been willing to do what ever it takes to improve our relationship. Am I the only one who cares?  Everyday I feel like I am being slapped in the face. I am totally being disrespected, yet I still have hope that we can work this out. Maybe we need to talk to someone.  Maybe they could be the mediator so that we can resolve our issues.  I’ve tried everything else so this has to work. If it doesn’t I don’t know what I will do.

If you are listening I love you too much to just let you go, but I am tired of you disrespecting me and not treating me the way I should.  I really hate to lose you as a friend but you are really making it hard for me. I can’t just keep this to myself. I need to talk to someone about this.  It is causing me to much stress. It’s time I get some professional help or I won’t be able to make it. You are driving me crazy! I don’t deserve this.  I have been nothing but a good friend to you.  The stress is beginning to be too much.  I hope we can come to some sort of compromise. Regardless of how things are right now I just want to say , SLEEP I love you and I miss my time with you. I hope I hear from you soon. Don’t let INSOMNIA get between us and tear us apart!

Love  your old friend,

Brandi  😦