Autoimmune Disease

Hope.

Do you have Hope?

I hope you do.

I can tell you one thing, through my entire fight for health journey, hope is the one thing I held onto.

Now wait, I didn’t say it was easy to hold onto it…

Maybe hope was the one thing I knew that I had concretely; the one thing I knew couldn’t leave me. Because I controlled it. I controlled when I spoke my prayers. I controlled when I needed it closer and when it was ok for my hope to distance itself somewhat further from me.

Then for some reason, when you’ve been sick for so long, you feel this need to prove to people how sick you really are.. how much more proof can you give though? For instance, in my case, no job, no kids, stay at home… wife, because of my illnesses.

Then you get the question that my husband got from my his mother: “Is Bailey a fighter?”

I would say quite proudly that I’m more than a fighter… 10/10 pain with a heating pad and blanket that follows you each of the two spots you go in your house, and being exhausted by the pain you feel, so you go to bed at 4:00 pm, only to find out, you’re unable to sleep until about 3:00 am because you just can’t get comfortable. Spoonies hear me out there! But for the rest of the world, its unimaginable, so the natural step to take next is to question or judge.

Hold onto your hope. The journey is hard to get through.

I wouldn’t have gotten through this part of mine without hope.

Let me help you picture it: I’m bipolar. And I was depressed.

My husband’s work schedule changed almost 100%. I had a quite nasty experience with my doctor’s nurse practitioner. I’m in the middle of adding back each medication that my doctor had weened me off of (in hopes to start a family) – but not the antidepressant. *roll eyes*. (I spoke up. But have hope in your doctors that they know best sometimes. You can always schedule an appointment sooner to change something if it’s not working out.) Recent visit to Emergency Room for what turned out to be an ovarian cyst.. I was in extreme pain over my whole body and unable to deal with these changes that felt so huge to me – even though separating and looking at each individually look like nothing. It’s life right? But when your brain isn’t stable and your neurons are  firing false responses to no stimuli, you literally feel like you’re going crazy! Believe me, I cried each day.

Hope.

I hope this gives you hope too:

Yesterday, I got into my rheumatologist earlier than my follow up date (See? You can totally do that. 🙂 ). I couldn’t wait any longer. Something was so wrong. You don’t feel pain like that for no reason.And joint pain popped up out of nowhere… Here we go:

Lonnnngggg story short, the answer was quite simple. (Misunderstanding, misunderstanding with nurse practitioner..) Blah, whatever. I call BS. BUT, my interpretation of my symptoms was a Sjögrens Flare…. Ugh here we go. Steroids, antimalarial, what now? Lets add to my pile, morning or evening?  😉

So my rheumatologist said: “Your symptoms are rolled into this huge ball right now, and they’re rolling down hill at  a high rate of speed – which means this ball is picking up sticks and what not on it’s way down. These sticks would be symptoms that actually don’t belong with you, you just feel like your body is out of control right now.”

“Oh my gosh, *sigh of relief* yessss..” She gets it.

“My job is to pick the sticks out and figure out what we really need to treat you for and how we can really help you. Because if I treat you for one of these “sticks”, like your joint pain, you will have no relief.”

I got so many answers yesterday. Answers I’ve waited for for years. Almost 2 years exactly this month. Turns out, my brain has had so much help over these 10 years (being treated for Bipolar Disorder), it doesn’t quite know what chemicals to let loose and which to keep bundled when, where, or how… or even probably what my own name is anymore… *HAHA* 😉

Since my husband and I decided we wanted to withdrawal from the medications in hopes to have a baby, my brain went haywire.

It needed back exactly what it had before.. Because it can’t function on it’s own with levels of Serotonin, Dopamine, or Norepinephrine. It had been told what to do for 10 years, same meds…

Add back anti depressant.

Pain – gone.

Joint pain and stiffness – gone.

Mood swings – gone.

Depression – gone.

Relief swept over me like some kind of pain relieving blanket and held me so close. Hope.

Hold on to your hope.

It’s all you have concretely. It’s all you have control over. And the answer, no matter how long it takes you to find it, may just be as simple as mine was (I hope for you it will be).

My fibromyalgia still lingers. I still have Bipolar II, I still suffer from symptoms of Sjögrens Syndrome. Now all of those are simply and easily managed. Hope.

H.O.P.E.

Hold On Pain Ends.

Free your mind.

A little too much time on your hands; so many things pressing your heart. Now you’re caught up in a brain storm, and the winds are tearing you apart. What matters the most now shouldn’t matter at all. . .  You forgot whos holding you up, and He won’t let you fall. Who’s in control of your life and knows better than you ever will? Who tells you time and again, Hush and be still. It’s time to recognize, your answer lies in His eyes. Where the river flows.

And if you’ll just free your mind, and the peace of God will follow. Won’t you give yourself a little time? Don’t worry about tomorrow.

Don’t you know that His joy is your strength – can you fathom it? Peace beyond your understanding; when you gonna grab a hold of it? Because you’re life’s not your own – you can’t do this alone. There is a remedy if you will let go.

And just free your mind, and the peace of God will follow. Won’t you give yourself a little time? Don’t you worry about tomorrow. . .

There is a remedy.

“Remedy” Ayiesha Woods

♥ Bailey

 

 

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