Slow down please…

You never dream that one day you would wake up sick and never get better, but it happens, obviously and to way too many people!

Luckily for some of those people they can manage it somehow and actually lead a pretty productive life with a some hiccups here and there! Sadly for others that don’t get that option as no matter what they try, it doesn’t help get them to even a somewhat decent functioning level. 

Quite often there are days where you get stuck in the “why is this happening phase” and that is all you can think about! Not a fun or good place to be, you can’t avoid going there all the time, but most of the time you can keep busy enough to keep you mind from going there.

Do you ever wonder if this is a way of telling us to slow down? We get so caught up in the normal we found in our  lives that we tend not to take time to appreciate everything that we have or the world around us! 2020 sure made us all slow down a bit and as messed up as the year was, it was still amazing to see what we really didn’t need to be doing and taking time to see all the beauty this world has to offer is good!

Do you wonder if getting sick was a way to tell you to step back and slow down. That you didn’t truly belong where you were in your life? Almost like you weren’t listening and there needed to be something big to make you step back! I know that it may seem a bit ridiculous, and it is kind of still thinking along the lines of “why is this happening”. I do tend to think more of what is the purpose of all this? What am I supposed to learn from all this? What is this supposed to teach me? How do I help people through this?

What are your thoughts, did this happen for a reason? Is there a purpose in all this? How do we help others with all these experiences?

What good will come from this? I have to believe there is a bigger purpose in all of this suffering, there just has to be!

One cord

Did you think this was going to be about music? Naaah, I do love music but don’t have any musical skills! Nope, this is about those little cords that help us talk!

What is it like to live with only one functional vocal cord?

Painful and exhausting for sure! The “frog in your throat feeling” with no way to clear it! You try and clear your throat and it just causes more & more pain! Some days are worse than others and you have to decide is what you want to say necessary? Sometimes you just have to deal with the pain as you need to talk, but often I chose not to talk because I am tired of the pain!

I unfortunately had to have my right thyroid removed in 2013 as the biopsy had come back too abnormal and the doctor couldn’t tell if the lump on my thyroid was cancerous or not, so he said it had to come out! Thankfully it turned out not to be!

There are always risks that come with every surgery and this one had the chance of damaging the vocal cords as they run right by/through the thyroid. After the surgery my doctor said everything looked good and I had no issues speaking at the time! A week later that all changed!

A week after the surgery I lost my voice almost completely and I could barely talk for 3 months, that was a lot of fun! Well, most people enjoyed it more than I did as I couldn’t really say anything to them when they talked to me or joked around! That was a very long 3 months! After that my voice slowly came back slowly, but unfortunately I learned that my right vocal cord was paralyzed!

When one of your vocal cords doesn’t work, the remaining one tries to compensate for it and works overtime! This causes a lot of pain, and I mean a lot! You never know how much a vocal cord does until it doesn’t do it anymore! Talking, breathing and even eating is hard when your remaining vocal cord works too hard and it all starts to hurt!

I can no longer talk loud, yell, scream or project my voice in any way, if I do, a ton of pain happens! As with most of my health challenges you can’t see and most of the time won’t hear how this effects me! Not many people will understand when you say that you don’t like to talk on the phone or in person much as it hurts too much!

Cepacol lozenges are great for numbing the pain, but with that comes overworking the good vocal cord and such because you can’t feel it, so at times the pain will get worse when that numbness wears off! And of course you can’t just eat those all day long, I tried and got sick, yuck!

All the vocal cord paralysis challenges got even worse when I had to have surgery to fix the Gerd and hiatal hernia! That is a whole box of fun with it’s  surgery complications by itself! Breathing got so much worse after that surgery that I had to go to speech therapy to help me breath better. Yes there is a thing called breathing therapy, who knew? Not me!

While the therapy did help me breathe a little bit better, there was no helping my vocal cord! I remember seeing this therapist before and she told me this time that she is impatient when it comes to anything working! Can you imagine that, a speech therapist being impatient and wanting to end the therapy sessions because what she is trying just isn’t working! Well, yup we ended the sessions, and I more than likely will say no to going back if my doctor suggests it. As with all my other therapy sessions I saved all my paperwork and can work on everything myself at home and I never get the results either of us want in these sessions!

When I was working I had to always talk quite a bit, no matter what job I had. I really tried hard to find a mini bullhorn or voice amplifier, but at the time I could not find any, sure now I can, but I don’t need one anymore! I do have an app downloaded on my phone that I can type what I want to say into and it will say it, but that takes so much time, I rarely have to use, but it will remain there just incase!

There are a couple different things the doctor could do for me and that is: injections in the vocal cord to try to get it to work some, a surgery where they would go in and physically move the right vocal cord closer to the left so the left one didn’t have to work so much or go to a different speech therapist more specialized in this area! Sadly there is no guarantee that any of it will help and he said with my history of getting all the complications from surgeries he didn’t really recommend it!

2019 the lump on my left thyroid had gotten bigger, so I had to go get that biopsied, man I really hate those huge needles being stuck in my neck and wiggled around and they tell you not to swallow during it, that’s very hard not to do. Of course since the way it all went last time I started freaking out that I might have to have surgery again and what would happen if my left vocal cord was paralyzed? I heard that people have had that happen, but I don’t know how they go about life with it! Very scary to think about, would I be able to talk? How would it affect my breathing? What would it be like with 2 paralyzed vocal cords? So many questions and never enough answers! Thankfully the biopsy came back normal this time and we just have to continue to watch it.

So for now we just continue the fun of living with one good vocal cord and hoping the lump on my left thyroid never becomes an bigger issue!

5 things…

Having a chronic illness is life changing and hard to deal with! In the beginning all you can think about is getting a diagnosis and relief! It doesn’t get any easier after you find out what the challenges are. There is mental challenges on top of everything else.

Chronic illness takes a mental toll on you almost as much as the physical toll. It is very hard to have to deal with all that is happening and getting past that is hard. Even once you learn to deal with it you will have set backs and that is okay as long as you don’t get lost there and forget how to get back! Leave a trail of breadcrumbs to find your way out!

There are some things that you can do to help your mental health and not get completely lost is it all.

📍 One is self-talk! You can think through situations before acting and to prevent negative thoughts. Try to avoid stressful social relationships, such as interacting with people who make you feel bad about yourself or uncomfortable! You don’t need anything adding to your challenges.

📍 Keep learning and be creative! Find some hobby that you enjoy doing to keep your mind off all your health challenges. You can also find an app or online course and learn something new, like a different language or a new skill. Rediscover an old skill or hobby that you had enjoyed doing but quit for some reason.

📍 Give or volunteer! Find a way to offer kindness to others, no matter how small! Simply smiling at someone and saying hello or asking how they are doing can help someone tremendously! You could find a way to volunteer some of your time, no matter how simple and short of a time period, you could be a huge help to others and ease you troubled mind at the same time.  You can even just listen to others, even online and help ease their frustrations.

📍 Take notice and enjoy the world around you! You could go for a walk or a drive and enjoy all the world has to offer! Even just relaxing in your yard and watching the world and people around you is fun!

📍 Play a game! Games are good time killers and distractions! So whether it is a video game. Card game, board game to a game on your phone or tablet, go get lost in them for a while and clear your mind! Just remember to come back to reality for a while!

What are some ways that you keep your mental health positive? What are some things that you do to distract you from all your health challenges for a while?

Missing…

You find a stack of “missing person” clipping under your parents bed, all with your picture in them!

Three weeks ago I woke up to a call, stating my parents had been killed in a car accident! This is something nobody wants to go through. It’s been a difficult time, and I couldn’t bring myself to go into their house until now! But being the only child, I guess I have to take care of this at some point. 

I started by just walking around, looking at everything. Remembering all the time spent there growing up. I start to go through a closet in their bedroom. While moving things, a box fell on the floor and landed under their bed. What I saw inside, shocked me to the core. I couldn’t believe what I was seeing. There in the box were hundreds of missing person clippings, all with my face on them.

I didn’t really know what to think. How could this be? Why, where, what?  This has to be a joke. This can’t be real! Who are my parents? Mom & Dad aren’t here to explain this, I’ve only ever known them as my mom and dad.  Where did I come from? Are my real parents still alive and searching for me? Do I have any brothers and sisters? This can not be real, but why would someone joke about this? What else are they hiding? Where do I even begin? Who else knows about this?

Uuugggh, why!?

With my head spinning from this discovery and looking at all the news articles spread around me, I contemplate my next move in figuring out the truth!

What would you do or say if you found this box?

I need a vacation!

I need a vacation!

This is something we all keep telling ourselves all day on not so good or crazy days!

What we don’t realize sometimes is that we don’t need a vacation, a vacation won’t change our circumstances, just our surroundings! We don’t need a vacation from our lives, or our home, or family & friends… We need a vacation from our head!

Next time you feel like you need a vacation, ask yourself what you’re trying to escape from and tackle it head on! A vacation won’t solve any problems in your life no matter how fun & relaxing it may be, they will be there waiting for you when you get back, just like drugs/alcohol won’t solve the problems in your head, they’ll be there when you sober up!

Some things aren’t easy to handle alone! When things get to be too much and you feel that you need a vacation, talk to somebody and get their thoughts or help with the situation, or just find someone to just listen! If you don’t feel like talking to anyone then send out a prayer request and hit your knees and give all to God as there is more power in prayer than there is in anything that we could ever do!

God is in control, no vacation needed!

19 things on Fibromyalgia

  1. They don’t really understand fibromyalgia. This illness varies so much and treatment plans are different for everyone, so there’s just so much they don’t know yet!

2. You will more than likely lose friends because you can’t go to everywhere and do everything that you used to!

3. They don’t fully understand how to treat fibromyalgia, they think that what will work for one person will truly work for everyone!

4. There will be people who don’t believe you about your pain, they may think that you are making it all up, because you don’t look sick!

5. They will more than likely say your other issues are a symptom of fibromyalgia!

6. That this illness effects every part of you and your life, not just your body! It will effect you work, social, love life and your friendships!

7. They won’t tell you that the medications won’t always work! That you will more than likely gain a lot of weight because of those medications!

8. They don’t tell you about the sensory overload, the sensitivity to light, sounds, smells!

 9. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks! That getting out of bed and showering and getting dressed can completely wipe you out!

10. They don’t tell you all the other connected issues like depression, anxiety, ibs and more!

11. That you will never get good quality sleep, even with the sleeping pills. Even if you stick to a sleep schedule of going to bed at the same time every night!

12. They won’t tell you that sometimes natural supplements and remedies are the better than the medications the doctor gives you! They for sure won’t cure you, but they can help relieve some of the symptoms!

13. How what you can do one day, you might not be able to do the next day!

14. They don’t realize how hard it is to have this illness and how disabling it can be, because you don’t look sick!

15. How the depression can be awful. Grieving the life you used to have, and the things you aren’t able to do anymore.

16. They don’t tell you the range of emotions you will face, the grief, the anger, the guilt of feeling like you let everyone down, and fear of not knowing what your future will be like!

17. They don’t tell you that going out and socializing will use up so much energy, even just the car ride there and back is very hard on you!

18. The you will mix up and forget words and they don’t know it because of fibromyalgia!

19. That it takes days to recover from holidays, the cooking, cleaning, socializing, ect!

I’m sorry for your pain

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that the fear feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what you want to be. Worse, you’ll think  that you don’t even know what you need be. You do. I promise. You will.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful.  Gimp, lazy, malingerer, stupid.   Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you take care of yourself first. I mean that holistically, my friend. Nourished, rested, soul-fed. Your children and others deserve that example.

A friend will force you outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for you in ways that restore your faith in humanity. You will cherish the friends and people and doctors who see past your challenges and who truly understand your strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of other’s challenges as your own. You will get to know yourself. You will look to the tools you have used to mitigate your own challenges. You will share them. You will be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

If you are a parent, you will worry about your children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to peers and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows you better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in you.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its “rewards” at times are tremendous. The remissions, however small, are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

And I will be here for you. Every step of the way.

Letter to my body

Dear body,

 I’ve known you my whole life and we have been through so much together!

I have always tried to be kind to you, I thought I was doing a good job!

I’m so sorry if I did something to hurt you!

I am so sorry if I neglected you sometimes!

I am sorry that I made you work so hard, but I just couldn’t just sit around!

I guess you might be able to tell that I am writing to you about some of our painful adventures together! I mean, come on they are our most memorable moments together, probably because the pain won’t ever let us forget! How rude!

You’ve given me a few hiccups growing up, but nothing too bad! I thought we were getting along well! The first 20 years of our lives we had so much fun doing so many jobs working through a temp agency, sometimes a new job every week, oh that was exciting!

The first 20 years together were good, but then it started to slowly go downhill! We already were suffering with migraines, not fun at all! Then I found out we had asthma, not too bad, but still a bit of a struggle as we worked with a lot of sprays and dust that you didn’t like! Oh the racing heart and pain that sent me to the hospital so many times with out any answers wasn’t any fun, but we made it through and now with the help of our meds, our heart doesn’t race as often anymore!

We got a break for a few years where nothing health wise happened and we were enjoying friends and family! Then the major fun started, and by fun I mean painful craziness!

I am sorry that I almost broke our tailbone when we fell down the stairs and boy does it flare up in pain still, ouch!

 Among other painful adventures I am so very sorry that I forced you to stay at a job that was slowly killing us, I mean for reals! There was so much hate there that you threw a fit every day driving there, but I was too scared to start all over at a new place, but we did it anyway after they hurt us and with that came all these new health issues! Then they kicked us out because they didn’t want to deal with it anymore!

But we were free from that hell and finally found a job that we loved and they loved us so much! I thought you were finally happy, but we slipped and fell so hard on the ice and more challenges continued to develop!

It finally got to be too much to handle and you forced me to stop working in 2017, I didn’t like that and I still wish, even with all the new crap going on in the world, that I could go to work! I’m also sorry that I didn’t stand up for us and demand better care with our doctors! I’m sorry that I didn’t watch our medical files closer to see all the lies they wrote about us, making it so we can’t get disability!

I hope that you can forgive me for falling so many times and causing so much pain! Believe me that our time isn’t over yet and I promise I’m going to do the best that can to get you help and relief from all this bullshirt we have to deal with now!

Have you ever written a letter to yourself or your body? Maybe a letter to your future or past self? I think It is a fun and thing to do, although this is the first letter I have ever written to myself! I’m not sure why I haven’t because I do like talking to myself! That’s not weird is it?  Ahhh, it doesn’t matter, weird is more fun!

How does creativity help you?

Creativity helps keep you busy and distract you from health & life challenges!

I have always been creative! I love designing and creating things! Even when I was working I would on down time if I had access to things, I would create storage and helpful things out of cardboard to keep my work area clean!

I get bored very easily if I am not doing things that keep me thinking and busy! I hated having a job where I had to do the same thing over and over every day! The most fun I have had was working at a plastic injecting molding factory, it was different every night, so much fun! Being creative and thinking creatively is a lot of fun and helpful to forget other things, like health issues and not being able to work!

Creativity and organizing are my things I love to do!I have always loved crafting and have had a few things like a cricut and paper crafts for years but never used them to their full potential! I would always plan a craft for when my nieces & nephews came over, it was fun finding new things to make and getting everything all set up! When my health challenges made it so I couldn’t work anymore, I started to craft more! My creativity has expanded so much, I love finding inspiration and creating things. I love designing and creating everything from jewelry, storage items to cards and other paper items! I get lost in creating things that my mind isn’t so focused on what my body won’t allow me to do and all the pain!

I enjoy listening to music & audiobooks while letting my creativity fly! I always need something to do or I will get too bored and end of sleeping a lot, but then I can’t sleep much anyway! If I am not actually making or designing things, then I am finding new ways to organize everything and make it all flow better! Some days I can’t do much because of the pain and such so then I am searching for more inspiration, designing cards, calendars and anything really! I has a slight obsession with binders and am always creating them for anything as you know everything has to be organized and neat in my world!

Audiobooks are a great distraction as well as while listening you can imagine it all in your mind, kind of like watching it like a movie! But really this is about creativity! Creativity also helps make money when you share your creations with the world through an online shop!

Ahhh creativity, such a helpful & fun skill to have! The only thing wrong with getting lost in all the creative fun is forgetting to eat food to have strength & energy to continue!

Are you creative? Does it help you in anyway?

2020 reflections

If 2020 was a person, it would be Janice from Friends!

So far, 2020 is like looking both ways before you cross the street then getting hit by an airplane!

Do to quarantine, I’ll only be telling inside jokes!

‘I’m not working out with a mask on’ is my new favorite excuse for not working out!

Coronavirus has turned us all into dogs: We roam the house looking for food, we’re told ‘no’ if we get too close to strangers, and we get really excited about car rides and walks!

The world has been turned upside down! Older people are sneaking out of the house, while their kids yell at them to stay inside!
 

First time in history we can save the human race by laying in front of the TV and doing nothing. Let’s not screw this up!

2019: Stay away from negative people! 2020: Stay away from positive people!

This virus has done what no woman has been able to do and this cancel sports, shut down bars and keep men at home!

I never thought that the comment “I wouldn’t touch them with a 6 foot pole” would become a national policy, but here we are!

If they just called it the ‘stay at home challenge’ and posted it on social media, things would be completely back to normal by now!

I hope the weather is good for my trip to the back yard, I’m getting sick of my living room!

So does all the work from home jobs only have a short 30 minute lunch or is it just my job? By the time I make it to the kitchen it’s time to clock back in from lunch!

Never in a million years could I ever imagine that I would go up to a bank teller wearing a mask & ask for money!

I need to practice social distancing from the pantry!

Does anyone know if we can take showers yet or should we just keep washing our hands?

Somewhere, someone is showering with a mask on!

I survived the great toilet paper scare of 2020!

2020 is a unique Leap Year. It has 29 days in February, 300 days in March, and five years in April!

COVID spelled backward is DIVOC. What DIVOC is up with 2020?

Day 7 of social distancing: Struck up a conversation with a spider today. Seems nice. He’s a web designer!

I’m not saying I’m going to suck at homeschooling my kids but my daughter just asked, ‘Mom, what’s a synonym?’ And I replied, ‘It’s a spice’!

Can we uninstall 2020 and install it again? This version has a virus!

Look around, look around at how lucky we are to be alive right now!

I feel like a Kindergartener who keeps losing recess time because a couple of kids can’t follow simple instructions!

My husband and I switched sides of the bed this weekend and that’s what we call ‘vacation’ now!

The year 2020…Brought to you by the letters W, T and F!