Writing to you…

Writing is hard, I often thought ”could I write a book or blog”. My brain is often full of ideas as I am always trying to find things to do. I like to write things down as I can never remember anything.

I also like to write the stories I post here, it helps a lot when you need to say something about life but talking hurts why too much with a paralyzed vocal cord.

I don’t post everything I write out as sometimes it is only written to get it off my mind and I feel better. There are times where I am so annoyed with it all that I Write it all out and then delete it in a few days.

I used to have a ton of ideas or words to write, but inspiration doesn’t hit as often anymore. Words are hard, for real! My brain is in a fog these days and I can’t remember the technical words or the right way  to word  things. I make a lot of spelling errors, and proofreading is not a strong skill with me.

I always say these days that as long as you can tell what I mean, it doesn’t matter if there are errors. Anything I write will never be great, but that is okay with me.

I have always wondered how all the writers in the world can make up everything they write and how do people not run out of ideas? But then I can create a whole alertnate world in my mind, but would never be able to put it into words. I listen to a lot of books and the authors go into so much detail, it is amazing! I get lost in my books and see them playing out in my mind. I often get sad when a book series ends as I am losing my friends that I loved to hear about. But, then I get the fun of getting to know other people and their worlds!

I do have a vivid imagination, as I writing this on my I-pad, in my mind I am in a cabin by the lake typing on a typewriter or in a tree house watching the sky and asI think or talk, the words get written down by themselves. It makes life more fun to have a great imagination, just don’t forget about the real world out there, lol!

I get confused by words sometimes. For example, the book will read “He hanged himself” and I would say “why can’t you write “He hung himself””? So many phrases and words confuse me and some people would think that I have never learned anything about the English language or writing even though I have, but brain fog and confusion has ruined all that.

A while back I had so many ideas written out and I posted them all too quickly and now the gaps in between inspiration gets longer and longer. It’s is not that I have to post often, but I don’t like huge time gaps in there for some reason. I think that is why I get burnt out and quit doing social media and things like that, because I convince myself that I have to do a certain amount of stuff with it all and it gets to be too much for me to deal with and then I just disappear for a while. Some things are gone forever at that point, and something I go back to occasionally.

I don’t really know if there was any purpose in writing this all to you, except to maybe say that I am not good at words, but It’s done and maybe you enjoyed it. In my mind I enjoyed writing to you and I slid the paper from the typewriter and threw it in the air and it soared away to you! Also the other side of my brain, I  just walked this out to the mailboxes and mailed it to you! Anyway you want to look at it, it’s all good in my neighborhood!

Incase you didn’t notice a trend with these stories, I like to end with a question or two. So these are my questions, it is your turn to talk! I hope that wherever you are, that you are having a most excellent day!

Is there something like this that you enjoy? Do you tend to get too wrapped up in things that you get burnt out?

Do you ever type lol or a laughing emoji and not laugh? I do that a lot! I find whatever I see or read/hears funny, but you couldn’t tell by looking at me! Ha ha ha!

P.S. I love the chocolate!

I stabbed myself…

I never thought that I would stab myself! I never thought even though it was so very painful to do that it would give so much needed relief!

I have had migraines since I was 15, they definitely are not any fun! I named my migraine Julie (Previous blood post) and she does not like to leave me alone! Along with the horrific pain I get extreme sound & light sensitivity and very dizzy and nauseous! I was able to somewhat control Julie but as I got older she got more aggressive!

For years I was only prescribed Imitrex, which did not help! I had like 4 different meds/OTC meds and a heated eye mask to try to help get rid of Julie as soon as possible or get some sort of relief as once she shows up she stays for at least 4 days.

January through end of March are always the worst time as Julie is there with me EVERY SINGLE DAY!! I couldn’t live like this anymore and was fed up with the treatment of the migraines I was receiving. I finally convinced my pcp to try something else and actually got a medication that somewhat knocked the pain down, not to an “I can ignore it” level but it was a little better. Unfortunately we had to try this med for a bit before we could go to the insurance company to get better meds.

I wasn’t thrilled with going back to the neurologist I had dealt with before, but then thought it would be okay as we were dealing with migraines and those are more understandable. I was prescribed Emgality and it took over 2 months to get the insurance company to approve it!

I was not expecting anything miraculous and being very very scared of needles was not thrilled with the idea of stabbing myself every month, but that is how much I am over dealing with Julie.

I finally got the injection meds in the beginning of December and holy rusted metal Batman did that freaking hurt! I almost vomited it hurt that bad to inject the meds into my leg, but I insisted that I needed to do it myself. I was amazed with the results! It kick Julie in the face,, the pain was gone and I mean GONE! Oh sure the nausea, dizziness, light & sound sensitivity ramped up, but the level 12 pain disappeared. “POOF”

I was told it could take a few weeks to kick in and work but the pain was gone with in a day. The last week of December Julie showed up with the pain again, and sadly had to wait until January 7 to do another injection as they have to be 30 days apart. I got used to the very little to no pain for the month that I hated having it back and it has been very hard to wait for relief when you know how good it was!

At my most recent check up with the neurologist, she said it will only get better the more you take the medication. I am very impressed and optimistic about this medication. I have been searching for and trying so many different ways to get relief from Julie and am beyond thrilled to finally have some! After so many many years of dealing with this horrible pain it is still surprising at how you forget how bad it was when you have a couple weeks of relief.

I highly doubt that this will ever make me like needles, but I may get used to and okay with this injection!

I almost couldn’t stab myself again on January 7, the thought of all that pain and fear of needles almost got me to not do it! I made myself do it and it didn’t hurt nearly as bad as the first time, but it still hurt a lot!  I will probably encounter that every time but it is so worth it to lessen and/or end the pain.

Julie is still hanging around right now, but she is only causing and dull ache, enough to know she is there but not enough to be a huge problem. Dizziness and lightheadedness is still ramped up and I look forward to that lessening as well.

My thoughts are so far I am very impressed with Emgality and will continue to stab myself once a month.

If you suffer with migraines (which I truly hope that you don’t) how bad are they? What helps knock the pain down?

Nobody knows…

These four walls closing more everyday and I’m dying inside and nobody knows it but me…

The pain is real even if nobody knows and I’m crying inside and nobody knows it but me…

I’m missing me and nobody knows it but me…

Nobody knows the pain that I feel!

The nights are long and the days are so sad, and nobody knows it but me…

Nobody will ever know the true feelings inside my head. They will never know the pain and torture living in my head. I wish I didn’t know about it either. Living with an invisible chronic illness doesn’t help things at all. It is a very hard life and I don’t wish it on anyone!

You try and get out of your head, but it is just so very very hard to do! Creating and craftiness helps distract me from it all. Listening to books and music is also very helpful, but at some point it all catches up with you and knocks you down.

We shouldn’t be made to feel bad about all of this. I say embrace it, let it out, scream, cry, break things if needed! Visiting these feelings and letting them out can be very good for you. It is okay to not be okay, let yourself deal with it. It is okay to visit and deal with it, just don’t unpack and live there. You need to find a way to deal with it all, find something that helps make you happy.

Never apologize for feeling hurt and sad, it is all part of being human. Never apologize for being you, for being real, it’s like apologizing for being human and that isn’t cool or necessary!

People hate for no reason and it’s becoming too easy and normal to do! I say let’s love for no reason! Less hate & more love!

You are beautiful, worth it, amazing and someone is happy just knowing that you exist! When you’re out doing life things, take the time to smile, wave or even say hi to someone, you never know it could just be the reason that they keep going in this life we live!

Nobody knows the horror that is in our heads, but maybe, just maybe it is time that people learn what is like, then possibly we could all learn to deal with it and help each other out and be a little bit happier!

Can’t be that bad…

One of my  favorite quotes from someone is always “it can’t really be that bad if you are still able to do this or that.”  I told them I didn’t know I had a choice.

Years in pain, tired and the many changes in me for no apparent reason … Hiding everything from everyone, pretending to be doing better than you are, just so I don’t have to hear them complain and put me down because of it all! You just do what you can so you don’t feel worse from the comments and suggestions from others!

Then the moment comes when they tell you what you have … You have mixed feelings: you finally know what you have, but how do you deal with it? The relief in finally having something to call these health challenges, but still not knowing how to help it. Sadly there is no real fix or cure, just goin through life trying numerous things to get a even the smallest amount of relief!

Lack of support and motivation, wanting to lie down, taking medication frequently; having a whole pharmacy on top of the nightstand.

Then, the daily responses, “Why did you get so fat?” “I have this great diet, if you just go out and exercised. If you just keep going and moving, it will be better for you! If you just have a positive mindset it will change everything and you will feel better!

This is all somewhat true in a way, as for some these things do help. Sadly for others no matter how much you try , they don’t help, and that is one the hardest parts of this all!

Silent and invisible diseases do exist …When you have an invisible disease it is difficult to argue from your perspective with ignorant people. They will never understand! Just best to save your energy for getting through the day and trying to find some relief!

Sick of always being told:

❌Did you go to the doctor?

❌ Have you tried this?

❌ Have you tried that?

❌You just need to exercise more!

❌ I don’t know what else we can do for you…

❌ I know someone who has that, and they do this, why can’t you?

Yes! I have and still do try everything !!!

Doctor’s say I just have to learn to deal with and there isn’t anything else they can do! I will never give up and I really want to make others know…

❌ A nap will not make it better! !

❌Exercise will not help me!

❌I am not lazy, this illness drains my energy and I never get good sleep!

❌I am not angry but sometimes it all gets to be too much!

❌I struggle daily with pain, mobility problems, fatigue and cognitive issues!

❌Just because I have the energy in this moment, doesn’t mean that I will always have it! It disappears instantly whenever it wants to!

Most frustratingly, people look at me and say, “It can’t be that bad; you look good “

“You must be better, because you’re smiling!”

Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good and it is an “invisible” disease. You can’t see it, but I for sure can feel it! You can’t fix it and you probably will never understand, but the truth is, I don’t fully understand it either!

Just have patience with me and all the others that suffer with these health challenges, we are simply doing the best that we can with everything!

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!