Things I’ve learned from this illness!

Having a chronic illness is life changing! All you can think about it getting a diagnosis and relief!

Let me tell you that it does not get any easier after you get the diagnosis! For most it is just a name to call you health challenges! Sadly for some, like me, the meds for that diagnosed illness don’t help!

❌With a diagnosis  of fibromyalgia you get looked at like you are crazy! You get treated differently because most don’t believe that fibromyalgia is a real illness. You see to get diagnosed with fibro you have to rule everything else out. There are some things doctors look for based off the similarities in the people effected by this illness. Nobody truly understands it and that understanding may never happen!

You are definitely not crazy and fibromyalgia is 100% real and as time goes on more & more medical professionals are seeing the truth of it every day!

❌ There is a lot to learn from dealing with fibro. One thing is that you don’t truly know pain and fatigue until you deal with it on the fibro scale. Don’t get me wrong here, I am not diminishing any other kind of pain or fatigue, but it just simply off the charts with fibro and there isn’t ever one certain thing that makes it all better.

❌ Understanding, you definitely learn understanding more of what some people go through. This illness is mostly invisible and therefore people tend to think you are faking it all. With dealing with all this, you get  a better understanding of looking fine and feeling like you were hit by a train and dragged 100 miles! It really is true that you don’t know anything until you have to deal with it yourself.

❌ Not one treatment works for everyone! There are many different things that can help improve your life with fibro, but sadly not one treatment will help everyone who suffers with this illness! Unfortunately for some the medications designed to help fibro just don’t work well! More and more research is being done and I do believe that there will be more definitive help for this illness coming!

❌ Just because we suffer from the same illness doesn’t mean we understand or are compassionate towards each other! One of the first thing I did when I was diagnosed with fibro was to jump on Facebook and find a support group, because I didn’t want to go sit with actually people and I wanted access to them all the time and not just on meeting days! I have learned being in these groups there is a lot of advice out there and a lot of help figuring this all out! There also is a lot of hate. Some people get angry when they see that other people can’t do things they can do! They say “if I can do you, why can’t you? , or “You’re stupid and just being lazy by not working when I am able to!” It can get bad in those groups, actually so bad that I left all but 2, because well I don’t need a bunch of groups and hate, just 1-2 groups with really good people!

❌ Pace yourself! I have learned to pace myself, though I still have trouble with it sometimes. I will sit down each week and see what I have coming up and plan out my time, now I know that it can be messed up at any moment depending on how I feel, but then something not so important gets pushed back! We need to go slower at our tasks than normal and take more breaks than usual! Like washing windows or walls, it’s too much to do in one day, so do one room a day as that is a big task, then you do little stuff if need!

❌ Lists, lists and more lists! I have lists and notes everywhere! I actually type out daily lists of everything to do including normal tasks like brush teeth and eat and drink water, sadly sometimes I will forget to eat! I have laminated lists and blank paper to write down things I want/need to do! Laminating it just saves paper and you can write and erase it so many times! If you can’t laminate something you can write on  glass or picture frames with dry erase markers, it’s so helpful! I do have note apps on my phone & tablet for when I am not near my paper or lists! They are so helpful! I also set reminders and timers with Alexa so I don’t completely lose track of time!

❌  Compassion & understanding! One of the biggest things that I have learned is compassion & understanding! It is so very true when people say you won’t understand until you go through it or deal with it! I knew that there were people suffering out there, but I didn’t understand it fully until this all started! Some will get upset and say “you look fine, why are you parking in a handicap space!” What they don’t understand is that not every disability or illness is visible! I don’t have a handicap sticker myself, even though some days I really need one! Once you experience everything an illness like this throws at you and all the hate from those who don’t understand, you finally get what it is all like and you can fully see what is all going on around you! Not that you weren’t seeing it before, but it’s a little bit more clearer now!

There are a ton of more things that I have learned throughout my journey with these health challenges, but I can’t remember any more at this time!

What are some things that you have learned dealing with all this torture?

I wish feelings were like Alexa

Hey Alexa, stop!

And she stops!

I wish a lot of other things were like Alexa, don’t you?

Hey fear, stop!

Hey crying, stop!

Hey worrying, stop!

Hey bad thoughts, stop!

Hey overthinking, stop!

Hey pain, stop!

Hey migraine, stop!

Hey sickness, stop!

Hey (insert issue here), stop!

Wouldn’t it be amazing if we could say that and have it happen! Life would be so much easier! You could tell just about anything to stop and it would stop!

As good as that all sounds, I guess it would take all the fun & adventure out of our lives! We’d be happy to get rid of the bad stuff, but we would miss so much good tangled up in that bad! Seriously think of what we would miss out on if we could stop all of that! It’s kind of like the fast forward button on videos, tv, movie, ect.. We skip the parts we don’t like, but what if in those parts something amazing was hiding! There is something to learn and gain from every bad situation in our lives! Sometimes we can’t see it until years down the road! Now sadly not every bad part is going to have a good part, but there is a reason for it all even if we may never know that reason!

What would your life really look like if we just stopped everything we didn’t like or didn’t feel we had time for! Would you work, if work is not fun? If not, how would you do the things you love so much? Wow, way too many questions and thoughts in this area of it all!

Life would be a tad boring!

Chronic pain truths!

If we don’t say it hurts: It hurts!

If we say it does hurt: It really forking hurts!

No chronic pain doesn’t make your occasional aches and pains less valid!

But your occasional aches and pains don’t magically grant you understanding of what I feel everyday!

It’s okay to have moments when you grieve the loss of the old healthier you!

Myth: You can see when someone is in pain!


Fact: Chronic pain patients hide their pain so well that you would never know they’re really suffering!

One of the most frustrating thing about chronic pain is that you can do right and still be sick!

I am constantly torn between “I have things that need to be done and can’t let this illness run my life” and “I have to listen to my body and rest!”

I often feel a lot of pressure to show up to parties and events even when I feel absolutely terrible!

The unpredictability of being chronically ill makes staying on a schedule difficult!

Things my chronic illness sometime stops me from doing….

  1. Getting out of bed!
  2. Going out with family/friends!
  3. Having fun!
  4. Working/house work!

I miss working!

I miss working!

You, you read that correctly, I said it, I miss working! This coming from a person hates leaving the house and doesn’t like people! No I didn’t not mistake work with the people I worked with! Although, I do miss some people that I worked with from various jobs!

I have worked a lot of different jobs, a lot! I spent quite a few years working at a temp agency going to different places that needed temporary fill in, sometimes it was a new place every week! It was fun, but eventually I quit doing that! The one thing I hated about working besides the people, was doing the same thing over and over every day, gaah it was torture! I simply can’t handle or stand doing the same boring thing everyday! 

I also never found a place where they let my potential soar and truly appreciated me! I started working when I was 14 because I was bored and didn’t stop until my health challenges forced me to! I worked no matter what! I couldn’t use my right arm, I still worked! I could barely move because I injured my back, I still worked! I was sick, I still worked! I was taught to always work or I get fired!

I stayed at one job way too long! It was slowly killing me and sadly that is not an exaggeration! It was so horrible that I’d cry and vomit on my way to work! I don’t even know why I didn’t quit! The only reason I left was because they fired me, and they did that because they was tired of dealing with my health challenges that they caused through injury and abuse!

It kind of was a blessing that they fired me, because for some reason I wasn’t going to quit! And from there I made a pit stop at a retail store for a year and then found the job I had been looking for! This place was amazing, it didn’t pay the best, but they made up for that with kindness, opportunity and care! They loved me! I got to work closely with the owners, who came out daily to check on me because I told them all the health challenges I was facing and he wanted to make sure I was good! I received the opportunity to help make it an even better place to work and make sure the workers got the proper training to ensure the best quality products! Also the best part was that the work I did was different almost every night, depending on what needed to be made and sometimes you would have to switch between machines or molds in the machine in the same night. It was always changing and it was fun!

I do realize that this place has more than likely changed a bit since I had to leave and may not be as awesome as I remember, but I’m pretty sure that it is, for me at least! I know most didn’t like working there! I just appreciated being appreciated and having a fun friendly place to work and to me the working environment is more important than getting paid more!

I can tell you I wouldn’t be able to handle working with not working for around 4 years, I kinda lost my working speed and strength! If you don’t keep going or can’t keep going, you tend to lose it! Sadly my health challenges won’t let me work anymore and if you see me or even spend a day with me, you may never even know I have these challenges as they don’t show on the outside and I don’t go out unless I’m doing mostly good that day!

So many things that I want to do, so little ability to do them!

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?

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!

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?

I couldn’t do it!

I often get told “Wow, I don’t know how you do it, I wouldn’t be able to do it!”

My reply “I don’t have a choice, and you could do it”! It’s easy to say I couldn’t be able to handle that because you aren’t going through it, but when you are, you don’t have any other choice! 

I didn’t choose the chronic illness life, the chronic illness life chose me! Why this happens, I will never know, but it happens too much to a lot of people! When you are faced with this painful new life, it is extremely hard to deal with in the beginning, actually it is always hard, but sadly you get used to living with it and you adjust accordingly to get the most out of this life!

With the help of family , friends and doctors, you learn how to manage it and live with it! Sometimes it get really bad and you just can’t handle it well and that is going to happen a lot! No matter how used to this new painful life you get, it is always going to be hard! You can’t do everything that you used to be able to do! You now have to depend on more people, even for simple tasks and that is very hard to do!

You could be part of the lucky group of people and find a way to manage all the pain and fun that comes with these chronic illnesses, to where you can live a more active and better life. There will still be times where it will knock you down for a while, but that will eventually ease up and you can get back to the fun! If you are not blessed enough to be part of that group, I truly hope that you have a good support system, especially if you can’t work and they deny you disability! Depending on the illness, that is something that is hard to get!

Having a chronic illness is not only very painful and exhausting, it is also extremely frustrating because some of them don’t show up on any test that the doctors run. You are now stuck with having to figure out how to live with it and you also have to deal with all the people that don’t believe you or understand your illness, because you don’t look sick. Although you don’t owe them any explanations, it can be hurtful and frustrating that they don’t believe you and trying to prove it all, although you seriously don’t have to prove anything! You know what is going on with your body, just getting the right help can be difficult!

I often thought , why don’t people support causes until they have to deal with what illness the cause supports! Well, the answer is pretty simple, they don’t do it because they don’t fully understand until they or a family member has to go through it! Then they will research and learn more about it in efforts to fix it and support it! If only it were simpler than that!

It is very true that you will never understand it until you have to deal with it, no matter how much you research it, you still get more and better knowledge when you have to live it! I promise you that you can and will learn to deal with it! Well, mostly, as these illnesses always have a way of surprising you! You will find something that helps you to some degree or possibly more!