Sunday, November 29, 2015

Holiday Hell? Nah, that's normal...

I love the holidays, because to me it means family time. And this year, Thanksgiving fell on one of my sister's birthday. She ended up in Urgent Care with a sprained wrist. My brother-in-law fell down the stairs and is too stubborn for dr visits. Me? Oh I defied my clumsy nature for one day, it seems.
But dealing with post concussion syndrome during the holidays sucks. Ever since my bad fall on Veteran's Day, I've been screwed up in the head (worse than usual). When I hit my head, I injured my inner ears or something like that. Vertigo, faintness, double vision, blurred vision, and the horrid migraines all the time - all come and go, without warning. Well, the migraines have a warning if I hit my head again when I fall, but they still pop up other times.
And that is how I ended up falling four separate times this week. Yesterday's fall forced me to go to the ER because using my cane wasn't working, and I was barely walking well using my mother-in-law's walker. So the ER dr believes I need to go to Johns Hopkins to see a Neurologist; rather than staying on a wait list just to get a call to be scheduled at the local Neurologist's office.

These last six years have been hell. But I'm doing my best to stay positive and hope that eventually the meds & treatments will start helping, and perhaps I'll get off disability and back to working full time. God has given me more strength than I thought I ever had. Going through life til my sickness, having a rough life, prepared me for this. And I have the best husband and son in the world! I thank God every day for bringing them into my life, and my in-laws too! They are such amazing people, and I love them dearly.

Have a good Sunday evening. I'm hoping I'll be able to post a positive update soon for all of my few followers & readers out there

Tuesday, November 10, 2015

Would I wish this away?

When the medical bills just keep adding up, medications become more in quantity and in cost, and the amount of 'ologists' are astronomical. When you find yourself under piles of paperwork while trying hard to pretend you have a semi-normal life, it gets more daunting every single day.
The stress piles up, the anxiety shoots through the roof, and I just want to break down and cry.
But I remember that I am a muthafuckin Warrior!!

I want my old life back. I want to work a full time job, I want to be back to being active. Most of all, I just want this pain and inflammation to stop. I wouldn't wish this on my worst enemy; all these health issues that have me disabled and in daily pain. Oh no, I would never wish this on anyone.

So to top off my six year anniversary of daily pain and meds that obviously don't help, I got a special present...and now I have to have surgery the Monday before Christmas. That means I'll need to rest up a ton before that so that it's not so bad for me after the surgery. I want to be able to keep our Christmas and New Year's plans, since my husband took off work for two weeks starting my surgery day, so we have tons of quality family time this Christmas :-)

Friday, October 23, 2015

Can we make our own luck?

Just when you are finally feeling hopeful again, after years of losing almost all hope; my body decides to throw me a curveball, or two...

Like I've said a lot in the past 6 years, 'All these one step forward & two steps back, just means that I am cha-cha-ing my way through this." I cannot give up on hope. I cannot give up on God's plan for my life. And while my body betrays me more & more, I thank God for giving me such an amazing support network.

While waiting to see what is the reason for these odd test results, and waiting to see which procedure and treatment plan are going to be given - I just have to sit & wait, very impatiently. Methinks that God has overestimated my inner strength & inner warrior somewhat. But, I still thank Him every day for all the #SilverLinings in this crazy #LupieSpoonieLife of mine.

I pray you start looking for your Silver Linings, so that you can get through whatever obstacle you are now facing. Focus on your inner warrior. Let out a war cry if you need to!! Just please don't give up and let your illnesses win. Yes, your illnesses may be holding you hostage; but there is so much to look forward to if you just hang in there, concentrate on every silver lining, no matter how small. Focus only on the positives, and you will find yourself so much more in tune with your body. Perhaps one day we'll escape our hostage situation. Until then, I'm here for you. Click on my Facebook page and friend request me, with a message saying you found me here. I can add you to the Support Group (closed/secret on fb) where you will find help, guidance, advice, and encouragement.

Wishing you a Fantastic Friday, and praying you are as well as possible

Love, hugs, prayers & spoons (lhps) to you all!!

Wednesday, October 21, 2015

Onward & Upward

My life in it's entirety so far, has been lackluster in luck. I have an unlimited supply of bad luck on my side. My mom always told me that if it weren't for bad luck, I'd have no luck at all. I'm a klutz, and a walking accident waiting to happen. I have a long repertoire of odd & unintentional self injuries that seemed impossible.
How does that help me? It doesn't really...but it helps me stay grounded, and sometimes it helps me stay realistic. It is so hard to think that there are people out there worse off than I am. It hurts my soul to know that no matter how much pain I'm in, someone out there is hurting even worse than I am.

Chronic illnesses & Chronic pain rule my life, and have ruled my life for six years now. 6 years of daily pain, too many symptoms to list, and a bunch of medical oddities along the way as well. But not knowing what the future holds keeps me on edge....ALL the time. I never know when something weird will pop up out of the blue (like it did last month), or how many ways my body could truly betray me when I was seriously starting to think it was beginning to play nice.

Being a chronically ill mid-30's woman, I hate that my life changed for the worse 6 years ago...But God will never give me more than I can handle...although I do think He seriously does overestimate my patience, will power and strength.

I want to know what the future holds for me. I want to know that all these meds and treatment plans are working. But as of yet, I've been in one giant flare-up for 6 years - and it just keeps getting worse. I want to see progress, feel progress within this broken body of mine. So I just bide my time until my body decides to cooperate with matter how long that takes!!

Monday, October 5, 2015

To The PAIN!

Let's take a moment to be truly real with each other about the chronic pain that is associated with many invisible illnesses.
My health issues have been a snowball rolling downhill, getting ever larger, for six years. Can you imagine having six years of unrelenting pain on a daily basis? I'm not talking about an occasional flare up. I'm talking about 24/7/365 for six full years FLARENADO that has blown up every attempt my amazing Rheumatologist has thrown at it thus far; even with me just hitting my one year mark of getting my Remicade infusion done every 4 weeks!! Still, my AutoImmune Ninjas keep hiding and recruiting/training more of my cells that my body is the enemy. And therefore it continues to attack itself. That is the type of pain I'm talking about. The pain that is in every joint, every muscle, every ligament, every tendon, and every nerve on all of my skin.

But I have some things that my AutoImmune Ninjas didn't expect. God, a great network of family & friends, and an inner warrior that is very upset with the changes.

Sunday, October 4, 2015

That Magic called Coffee

You know that magic that wakens you each morning, shortly after your body finally arranges your release from imprisonment in bed...after hours of NOT sleeping.

COFFEE; that smooth, delicious and nourishing magical potion that helps you make it through some of the day. The stuff that takes your mind off the aches, pains, and stress; if only for a short period of time.
Coffee is something to be enjoyed and celebrated. And it is celebrated by so many people. This past week, we even had a National Coffee Day!!

I used to hit the ground running early in the morning, and only need a cup or two of coffee to make it through an entire long day that was a full time job and a part time job. That was back when I was healthy.
This past six years though, coffee has merely kept me somewhat awake while my fatigued body and mind muddle through, day after day.

How do you take your coffee? Do you love lots of creamer? Do you drink it black? Do you use flavored creamers to change it up every now and again?

Here is a great link to a friend's blog post about homemade creamers

Saturday, October 3, 2015

Getting My Life BACK ON TRACK

Oh you know that feeling; the one when you've been isolated for way too long, it's long past cabin fever and has turned into something wicked and eerie? AND you're past the point of getting on your own nerves? AND you're having conversations with your furbabies, and finding out that they have very awesome 'secondary' personalities - which you have given them because YOU ARE TALKING FOR THE FURBABY! Now to most people, this is a wake up call, or at least it was an eye opener for me. I hadn't realized how narrow my view of the world had become while I have spent over five years stuck either in bed or on the couch, and rarely leaving the house unless it was for one of many, many doctor appointments with all of my 'ologists.'
So I said to myself, 'It's time to get back to having a purpose and fighting my way back to getting my life together, no matter what the pain levels are, no matter how little sleep I've gotten. Because I was at that tipping point where it could've gone the way of the eye opening I had, or I could've seriously used an extended stay at a loonie bin for real. I'm glad that my faith in God, my AMAZING husband, my awesome support network of family & friends, and my inner strength have never abandoned me.
My body has been through all of Dante's levels of hell in my short 35 years, and not once have I asked God why. Because this is the journey God carved out for me. My formative years matured me quickly, prepared me for many challenges in the real world, and gave me an inner warrior that was hard to contain in my 98lb body. But I did it. And I excelled at life. I tried different jobs, I fell in love, I fell in lust, I had fun, I traveled some, I made many, many great memories with some pretty amazing people, I worked my ass off & was always on the go! I WAS A FORCE OF NATURE, to put it mildly...

Then Autumn of 2009, my body started taking me hostage. AutoImmune Ninjas crept in from God only knows where, and unleashed a torrent of wild, varying, intense, extreme, debilitating symptoms by way of quite a few AutoImmune diseases.
First we found Fibromyalgia hanging out literally e.v.e.r.y.w.h.e.r.e.
Then we began seeing a connective tissue disease progress & transform so quickly, that even after six years, it's looking like Lupus may have been the leader of the AutoImmune Ninjas that crept in. He brought his buddies along to screw up my life and teach my body to attack itself & its healthy cells, and to see the intruders as 'friendlies.'

to be continued. most of my blog posts may come in pieces on occasion since I can't seem to focus on any one thing solely, for more than a short window of time. lovely symptom, yes?

Monday, September 21, 2015

Woes of an Empath

Empaths are used to feeling others' emotions, so being devoid of social connecion isolates us further. Whether the isolation is from social anxiety, chronic illness, recovery, affects everyone different. For an Empath, isolation is hell.
And because it's a positive trait of ours to feel others' emotions, without interaction we don't feel (even with all the angst, fear, etc emotions that surround us in public) all the extra joy that used to surround us and rush to our soul as an old friend embracing us. Joy that we had put out in this world, bounding all around us in celebration of any & everything.

How many of you have been identified by friends or family members as an Empath?

Sunday, September 20, 2015

It's been a while...

I know it's been over three years since I've been on here. Things keep getting worse instead of better, even when there's an inch of progress, there is an immediate foot of backslide.
Life with Chronic Illnessess & Chronic Pain is not an easy life. You lose friends, you lose your job, you lose your self worth, you lose your purpose.

People like to talk about how Being a Chronic Pain patient can cause depression & anxiety. What about us chronic patients who already had severe depression (with bipolar under review) & moderate panic.anxiety disorder.

Add in social isolation to someone who was a social butterfly.

I can't dig deep today. It's been too rough a week for all that. But, I want to let you all know I'll be blogging again. It's another form of therapy that may help me tremendously when my brain fog isn't too thick for the lighthouse.