Autoimmune Disease · Fibromyalgia

It’s the normal life now.

Well, it’s about time for real words and real life rather than the passive/creative/poet style/story telling format that usually comes from my over-sensitized brain and sometimes (probably most actually) from my broken heart from the cruelty of our nonadaptive world. . .

The weather has been beautiful here. We have prayed for rain, for I’m not even sure how long! Well it finally showed up, but not without vengeance for all those with joint problems and chronic pain, unfortunately.

It’s been cloudy for at least 2-3 weeks now, raining every so often to make our yellow grasses green and littering our yard with dandelions and wishes waiting to be made.

The affects of the beautiful smell of fresh rain during the springtime, other than the breeze that flows through our deep cleaned (by chronic pain definition) house, has sadly been swollen joints, muscle spasms, pain that even my strongest meds won’t touch, and a completely whole reminder of why we searched for help in the first place. . .

I would normally insert my first experience with this unhealthy mess here, but I am working on adding some new pages that will contain all of that information, plus some resources.

In continuation of the paragraph before last, due to the recent increase in pain, I was pushed to my last limit of the flare that fell on top of me as my muscles have loosened into a more relaxed state after losing my Mimi. Some deep breaths, and a lot of tears and prayers have brought me here, but finally, I could let the tension go.

Cue pain.

First time flare pain, before I’d been diagnosed. I handled it the best I could, but the pain finally broke me. I gave into the hole that sucked me in immediately.

The closest people to me have been begging me to find another opinion, but most importantly, they’ve begged me to find help.

We’ve tossed a couple hospitals and research centers around, trying to figure out the best route to go. Brady and I – suddenly and out of an intense load of pain and stress on us both – made an agreeable decision to turn down the reputable name: Mayo Clinic.

I mentioned in my last post or a couple back at least, and that was directly after I had applied. I was terrified. My anxiety and stress levels were through the roof completely. Somehow through the twisted roots of anxiety and stress, I found a bit of relief.

I was called for an interview for more information to pass along to a doctor. They would then approve or deny me the ability to be treated at their Minnesota location – did I mention that traveling is far from an easy task? The change in sea levels results in quite a bit of change in the barometric pressure, which then result in pain for me.

 

I would have to wait about 3 business days to hear from them.

Denied. And a flood of relief came over me. More relief than the relief I found from applying… which was surprising to me. It could possible be described by Brady’s shocked face and statement: “well… you aren’t sick enough to be considered for the Mayo Clinic right now, so it could always be worse!”

 

He’s right.

 

And as tired as I am of my rheumatologist’s rude way of speaking to me – and then even more so when she added “you just need to exercise.” Which – I’m not stupid. I know that exercise not only releases highly helpful neurotransmitters in your brain, it also conditions your body.

I’m just so tired of it almost being a doctor’s way of saying “there’s nothing more that I can do for you.”

My first  thought was: “at least help me get more oxygen into my lungs so that I can breathe first!”

My second thought came off as: “I pay you to help me. You’re not helping me, and you’re being rude about it.” (They’re lucky that they are the top rated and one of two choices of the rheumatologists where I’m located.)

 

And then it actually dawned on me…

What am I doing to help myself?

Ive given into my illnesses completely. Pain will change you. Am I lazy? By NO means what-so-ever. Do I exercise? By NO means what-so-ever. Haha!😂🤦🏻‍♀️🤷🏻‍♀️

 

So Im taking this into my own hands now y’all. If I’m unwilling to help myself, There isn’t a possible way that anyone else could  help me either.

Wish me luck! And good thoughts, too. Please. 😂🥰

Maybe I’ll be able to drop some meds, and benefit physically and mentally from this program, just as I’ve been asking my doctor to do for me – how unrealistic is that? (Being sore from a work out feels as if my fibromyalgia flared up again. The amazing “sore” and “productive” feeling that comes from exercise, I get just the same as fibro PAIN – so yes  I’ve avoided this greatly. However, I’m excited to see where this new path takes me!)

🏋🏻‍♀️🧘🏻‍♀️🤸🏻‍♀️🚴🏻‍♀️,

Bailey

6 thoughts on “It’s the normal life now.

  1. Hey, Bailey! I’ve been recovering from a touch of the flu, oddly enough. It only lasted 2 days or so though. I was wondering why I would be getting sick seeing how I’m one of the most careful people around with I start to feel like I am, but this just came on suddenly. Fever. Skin sensitivity. Chills. It all happened on Friday. Then when I spoke with one of my childhood friends that I speak to almost daily, he gave me his diagnosis. He was a medic in and off the battlefield in the Navy. He simply said that I wasn’t getting enough sleep most likely.

    Then I thought about my new workout routine which is pretty simple. 100 push-ups, 100 situps, 100 squats everyday mixed in with my 1 miles run every other day. The time I would normally use to grab extra time for rest was cut into by my new plan. So turns out I was working my body harder with way less sleep. It definitely reminded me of the importance of rest 😅

    Other than that, all was well over the weekend other than the occasional argument with she who will not be named😋😅. Had my Army Reserve duty over the weekend too but it was alright.

    As far as working out goes, Lol. Yeah, I love working out. I don’t frequent a gym because I lack the time in the day to do so. I use to lift 6 days a week before kiddos came around. Now, I just work out at home to maintain what I have. Besides, my body has plenty of aches and stuff from lifting heavy back in the day, so my idea of being the strongest one in the gym has come to an end. I’ll leave the really heavy stuff to the younger guys. Thanks for noticing though 😁😅😋

    I’m happy if my words gives you just a slight bit of encouragement, Bailey 😁 I’m always so happy to hear from you. How was your weekend? Enjoying your rainy days? Maybe it’s over by now…hmm..

    Thanks for responding, pretty lady! Life can keep us nice and busy these days, but I’m glad we can always carve out some time to get back to the blogger world and check on each other.

    Liked by 1 person

    1. I agree. You replied June 3, and I’ve continued to tell myself “I need to check my blog!” I’ve mostly felt a lot more positive now though with the work outs and healthier eating thrown in so writing is a place that I almost don’t want to mess with anymore. I would really like to participate in the world rather than watch it and retreat into hiding to write. Merp. Lol!
      I’m either doing something now, or completely exhausted!!

      Haha, you sound like Brady!! 6days let week before a job (all the way through high school). He did the same thing. He’s picking up going to the gym now too though… except I play it from home. I don’t like germies…. BLEH 🤢

      I just cannnnt. 🤭
      Popped my knee out of alignment a couple days ago. Doing a plank and dropping hips side to side… guess my tendons and ligaments aren’t ready for that yet. Or at least i hope that’s the case. This autoimmune disease is hard not to be heartbroken over sometimes. I’m trying to better myself , and then that? After the breathing issues? I’m just over here mad at Sjögrens like it’s a person. Except if it were a person, I would have already taken it down with an intense beating by now! 😂😂

      Aw yuck. I don’t like fighting period. I’ve felt some energy suckers around me lately. And I kind of just can’t. I want to put down my phone and iPad and all games and friends and just leave it all alone. No, no one can need me – it’s not allowed.
      Oh except I’m going to see my DD tomorrow so I’m excited for that. Saved abs for tomorrow so I can get some energy pumping for a visit with him.

      Yeahhhh storms have passed “for now”. It hasn’t rained this much since I can ever remember… a creek was down to 6inches of water (truth), but got to a point where it flowed and rose the lake up to 30 something feet… it was loooowwwww before that. We’ve been in drought. That’s fun with Sjögrens too. 😆😆😆

      That’s hardcore! But military so I get it! Brady has a friend that is in the reserves as well. So I know some of what it entails. Not much though!! Oh geez….

      Phone. Calling non-stop. I’ll have to reply more another time. Annnd text message. Fb messenger call. Yep. Stfu I’m so TIRED!!! 😭😭🤫🤫 LMAO

      oh my gosh and it’s already time for Brady it wake up?! Where is my day?! My coffee isn’t finished and I haven’t moved much from here… trying to rest my ankle and need buuuut still. I think I over did it yesterday anyways.

      Psh. I’m procrastinating. 😂😂
      Have a good one Trey!! Thank YOU for responding too!!!❤️

      Like

  2. I’m happy you came to this new realization of yourself. Doctors are here to help us and I feel like anyone would have felt the way you did when they were addressing your issues.

    Then, somewhere deep inside you, came the resolve you needed. The human body is an incredible machine and it does have a way of helping itself. Of course that takes large amounts of motivation, which you have now 😉🙂

    Just think of how many people aren’t on this path to better health that you are on. It’s so easy to just let your body coast and just take whatever misfortune comes with it. Then there’s you who has decided to take strong action in healing yourself on top of fighting your autoimmune issues. That takes a lot of heart, Bailey and it’s something I knew you had all along ❤️💚

    Quick question. Do you use meditation as well? I like to think a little quiet time away from your the stress in our own minds helps tremendously with our health as well. Just a thought ☺️🧡

    Have a great day, Super Woman 💙😁

    Liked by 1 person

    1. Trey,

      You’re awesome. 🌻

      There are so many people who just get mad at doctors when they are told to exercise, because it’s easier to feel miserable and blame it on someone else. It’s also hard to hear. That’s not the answer though. It only took about 5 years to come to the actual point, but I’m really glad that I did. The weather has been yuuuuck so I’ve missed a couple days. Man can you feel a difference… I need to squeeze some exercise in somewhere! However, how do you wish that the weather was different when we have been praying for a season of rain like this for years?! Ask God for what you need and until He opens another door- be it what you asked for or something, instead that you need, praise Him in the hallway🌻

      I am making an educated guess and assuming that you work out? Oh my gosh that statement is laughable. Because duh! 😂

      I can feel my body falling back into the old painful habits…. like those big muscle spasms… oh those are fun. Have had several tonight. But like I said, the weather puts so much weight on the everything that makes anything feel better. It will all get back to it soon enough though.

      I hope you also have a good day, Anthony!!❤️

      Liked by 1 person

    2. I was way too tired.. like in my last reply I sent you.. to come close to being able to reply to you. So now that my brain fog is passed, I’m going to re-reply!! 😂🤷🏻‍♀️😝

      Just give me a sec and I will do that, and I promise to use my brain this time!😂😂🤪😅

      Liked by 1 person

    3. Trey,
      You are very encouraging, and you really do not understand how much I appreciate it. You are a true example of how one kind word goes much further than you could think.

      We need more people in this world like you. Thank you for simply being kind. ❤️

      Thank you so much 😊
      It’s been a journey of ups and downs for sure, and it’s far from over. Today was a difficult one. I’m going to try to see if I can get the right words out to describe it in a post shortly… though it is late.

      It’s hard to pull that motivation out. A body at rest will stay at rest unless acted upon by an external force… I honestly just got tired of being told to exercise. When it turned out to work, you have no idea the relief that came immediately. I took a couple days off because of a sinus infection/fever, and began feeling the pain again today, so once again, pushed myself to do a class. Only to find myself on my back gasping for air… I’ve changed my Sjögren’s Syndrome page a few times. I just updated it to include this info. 😣😣

      I feel the pain (literally) for everyone who is struggling with their doctors telling them to exercise. It’s insulting to hear, so it’s the last thing you want to do. It also instills fear that you will just be overcome with more pain. The human brain sure is affected by the external force I was talking about earlier though! It’s amazing that one hour, I’m taking meds for pain, and a couple hours after working out (even though I ended up painfully searching for breath) I’m pain free – and not because of meds.

      Thank you Anthony. 😉 I sure try….
      It’s very obvious that you work out. What I meant to say earlier, when I couldn’t find the right words, you admired yourself that you’ve dropped quite a bit of weight, (which was not needed to begin!) are you focusing more on cardio? I would picture you more as a weight lifter 🏋️ 😊

      I try to find time for meditation in the morning, when I’m able to have time alone with my devotionals and my Bible. Though lately I haven’t been very good at it, to be honest. I really enjoy breathing focused meditation, but sometimes that’s hard to do when a 60lb dog wants to sit in your lap😂🤣

      Hey! You have a great weekend!!! I hope it’s all that you’re looking for💙💙

      Liked by 1 person

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