Hope for what?

How many procedures or surgeries have you been through? 

Do you have to keep a list of all of them with you, along with meds list, to every dr appointment?

Then, welcome to my world of hell...you have been initiated into the Spoonie club. 

I had a surgery on December 21st, and am still looking at a long recovery because of all my auto-immune issues. Instead of the standard 2-6 weeks, I'm looking at 2+ months of being more exhausted than usual, and having more pain than usual. 

Do you find yourself wishing you knew more people with similar issues? Have you met amazing support online for your issues? I have found some amazing friends online that I talk to all the time, and wish that I could meet & give them the gentle hug they need, from someone who understands. 

So as I sit here with half of my daily water intake waiting to be finished (at 340pm), I just wonder how long it'll be until I get better all-around, not just from the surgery. I want to be able to throw the football around with my son, or even just shoot hoops with him up at the park. And he just happens to like tennis, and I miss playing tennis...this is one of my major goals. Buying us both racquets & a tube of tennis balls, and eventually maybe start playing tennis together. 

Whatever struggle you're going through, know that there is someone out there who feels the same, or similar. 

Wishing you a blessed & pain-free day!! 

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

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 :-)

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!!

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 me...no matter how long that takes!!

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.

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 http://marcystyle.weebly.com/blog/october-04th-2015