Sleep study nightmare

Get a sleep study, it will be fun they said…

The night of July 19, 2019 started out good with finally getting the sleep study I’ve been asking for. I was feeling so tired and nauseous from forcing myself to stay awake all & night though, and after being all hooked up to what felt like a gazillion wires I was ready to lay down.

I went though the  required steps before I could try to sleep and then it was black and quiet! 

Shortly after laying down I started losing the ability to move my right side, which is normal and I been through it way too many times! 

Without a clock I had no idea how long I laid there trying to sleep, but I eventually fell asleep. Then started the dream, it was pitch black with a dark figure running, it  was me just running from what, I don’t know. Then I was falling, more running and falling, I could feel myself falling into a deep dark hole.

 I woke up and I couldn’t move my right side, I couldn’t even open my right eye, which has never happened. At the same time, my while body was extremely restless and was jumping constantly. Then eventually that calmed down, but I lost the ability to move my left side as well. There I was laying in an unfamiliar place paralyzed from the shoulders down, and having a difficult time breathing and I couldn’t talk. I tried to say “help me” but nothing came out! Eventually a voice came over the intercom asking if I needed help falling asleep, at that time my voice had come back and I stated I could not move. She came in and asked if I wanted to lay on my side, I stated I’m having trouble breathing and I can’t move my legs or arms. She asked if I wanted to go to the hospital next door. I said I’m not capable of making the decision right now. Part of me wanted to say yes, but I knew what was going to happen at the hospital! Nothing. 

She said she was going to go talk to the doctor and he happened to be walking by, she advised him of the situation and he said he was calling 911! And then there were first responders in my room asking a lot questions, and not fully believing what was going on. I do not blame them, nobody believes it. We waited for the paramedics to get there, and then more questions. Not believing me they asked if I could move over to the stretcher. If I could, y’all wouldn’t be here. Just a couple minutes later I was in the ER, and more question came. Nobody believes me, I even stated I’m not surprised you don’t believe me, nobody ever does, but this is real, and I hate it! The doctor even stated that I can not be paralyzed as I was talking completely normal!  Seriously!?!?

They hooked me up to the monitors and left me for about 2 hours, they finally came back just as I was going to pee myself! With the help of 2 people we were able to get up and use the commode they brought in, I started gaining the use of my arms back, but not much.

They left me alone again, not doing anything but asking if my parents were really coming. They were but the storm knocked down tree branches across the driveway so it took a little longer than usual. Once they got to the hospital, the doctor finally came back into my room only to ask if what I said was happening really happens. He stated they were ready to send me home, but not alone. My parents explained that this happens very often and it is in fact real! The doctor stated I should follow up with my neurologist, I stated they refuse to help me. He said there aren’t any other tests that they can run to help figure it out! He actually wanted me to get up and walk out on my own. That was not going to happen.

So that is why I don’t go to the emergency room when these episodes happen, they won’t do anything. They actually wanted me to walk out of the hospital. Not happening, I was so weak and still couldn’t move my legs. By the time I got home I had gained back my arms and left leg to the point to semi function. Usually once these episodes end I bounce back as if nothing happens, this time I didn’t. I was so weak and sore and exhausted, it took until the next morning to get over it. But then I was still in tremendous pain because we lost power early Saturday morning and I had to sleep laying flat, which causes a lot of pain. The power came back on early Sunday morning which is great, yet the damage is done, I’m in tremendous pain, weak and exhausted. 

That is a weekend I never want to repeat again!

I was told that I had to repeat the sleep study as they didn’t need get enough data to analyze! I was afraid to go get it done,  but after a week and a half I finally called to reschedule it! The second test went better, but I still lost the ability to move, but it just wasn’t as severe as the last time! 

Sadly they said there were no problems found! Apparently I didn’t move much which is understandable as I couldn’t and was hooked up to so many wires that  malfunctioned when I did move! 

The sleep doctor office I was seeing at the time told me to keep a sleep diary! Track when I had caffeine (which I never drink caffeine anymore), when I napped and slept! The doctor said assistant started telling me here isn’t much they can do, but keep on with the diary! She stated that I couldn’t enter my room until I went to bed for the night! I said I’m sorry but that can’t happen as 1/2 my room is my craft/work area and I need to work there! I was starting to say that they can’t just go with whatever they tell most patients. That we need to think outside the box with helping me, but she got up and walked out! 

 Next thing I know she was back, and the doctor comes in. This is the first time I’ve ever met him and he starts demanding that I do what they say! I can’t go in my room and I have to be up by 5:30 am and can’t sleep until 11pm! Now anyone who deals with chronic fatigue and fibromyalgia they know the sleep is very important and I can not force myself to stay awake that long! The nights that I did force myself to stay awake for the sleep studies I was feeling so very sick and weak because I didn’t rest during the day! I will say that I don’t often nap as I’d rather be awake crafting and listening to my books. Sadly the only thing they would say is what I’ve have tried so many times. I must follow and do what he says or I’ll be screwed! 

Did I speak up and try and get them to think of something different? No, I was too shocked at how this doctor and his assistant was treating me! I know that doctors has basic routine things they want to do first for everyone, but they seriously need to adjust their plan and listen to the patients more! Figure out what is best and not try the same thing for everyone! Needless to say I didn’t set up a follow up appointment and won’t go back! I have learned to stop dealing with doctors that are rude and I don’t feel that they would ever do anything different! 

These doctors may view me as uncooperative and difficult, but I’m not! I am tired of doing the same meaningless things and want them to think of how to help patients where the standard don’t help! Like my pcp will remind me is that I know my body the best! I know what has worked and what hasn’t!

I’ve said it a million times it seems, but I’ll keep saying it. The one thing medical professionals need to learn in school is how to actually talk to and listen to the patients!

Trust the feeling!

You know that feeling in your gut or where ever it lives that something isn’t right, or this person isn’t that good!? Trust it!

I can tell within 20 seconds whether a doctor is going to be good to me or not! This feeling is never wrong! I actually get this feeling with anyone, but I listen to it more closely with doctors!

These medical professionals are supposed to take good care of us, in fact we trust them with our lives without even knowing anything about them because of the work they choose to do!

I listen very carefully and watch closely at how they act when they first get in the room, it all is very important in how they are going to treat you! Now I will say that some of this may have to do with how their day is going and what they read in my chart. I know for a fact that some doctors have written lies about me in my chart and I am not sure how to fix that yet, but maybe what is written makes them think that I am wasting their time, I really don’t know! Maybe I for should ask that some time!

I always assumed that doctors knew best for the most part, and that is true in some cases, but not always! Some doctors like to just go along with the basics and when I ask for more or  challenge them, they tend to get upset! I have had a doctor stop seeing me because I wouldn’t do anymore physical therapy and sleeping pills didn’t help! He didn’t want to dig deeper and try to run other tests or think and figure any of it out! Then of course if he writes something off in my chart, the next doctor will see it and not take me seriously I bet.

Doctors want us to tell them what is going on and what is wrong with us, yet they get upset when you go into too much detail because you have done your research. It is very true when I say that the people living with these health challenges know more than their doctors, because we know how our body is acting and what is working and not working! We need to do our own research and yes I know we can’t believe everything we see online and we don’t want to self diagnose, but it is better that just waiting on the doctors as they take forever sometimes!

Doctors will have more access to the medical side of all these things, but there is a world of information and support groups out there to help us! Talking with others that are going through some the same things you are is not only helpful emotionally & mentally, but also helpful with finding out what is wrong and what to do! You simply take in all the information, notes and everything and go through it and see what you want to talk to your doctor about! It has been very helpful for me! This is also a great way to find out some more natural supplements or things to help you get some relief, of course you should always talk to your doctor about it!

I feel like I have gotten off topic, but I think it all goes together! You are seeking help from these doctors and you need to make sure they are the right fit for you! One doctor doesn’t fit good with all patients! I have lost count on how many doctors have said “well this is what a lot of my patients do, so you must be the same way” or “this works for these people, so it will work for you as well”. Sorry, that is not always the case. They need to learn to think outside the box and we need to learn to stand up and fight for the right care!

If you get a feeling like your doctor isn’t listening well or they are not trying their best, speak up! If you don’t think the doctor is going to listen, then talk to the nurses, I know or a fact that they do listen. Nurses are the ones in my mind that care the most as they do most of the work! You can also ask to talk to the care manager, I have spent a lot of time talking with care managers, both in person and on the phone, as they tend to check in with me to see how my doctors are working for me and I love that! Care managers are the main go between with patients & doctors, they need to know who doctors and nurses are doing!


Trust your gut!

Trust that feeling!

Stand up for yourself and your health care!

Talk to nurses!

Talk to care managers!

Talk to your support groups! If you don’t have one, get one! We may not know each other that well or at all, but we know what you are going through and are here to listen, talk to, vent to, and brainstorm!

You are never alone!

Don’t lose yourself!

Because you didn’t want to lose him, you lost yourself in the process!

 You became a woman who kept being mistreated and you formed a habit of saying “I’m used to it”.

You became a woman who kept being unappreciated and you began to tell yourself “It’s alright”!

You became a woman who kept being undervalued and you learned to say “I’m fine”!

You became a woman who kept being put last and you naturally reacted “eh, whatever”!

You became a woman who kept being taken for granted and you just dealt with it saying “it’s all good”!

You became a woman who was unhappy and told everyone “everything is good”!


She forgave you for shit you would have hated her for!

Let that sink in!


She thought he would change, but he didn’t!

He thought she wouldn’t leave, but she did!


Nobody is worth your suffering and happiness!

There is nobody out there worth losing yourself over!

This isn’t or wasn’t your fault! It happened to you , not because of you!

Please don’t lose yourself!

Fight for you, you deserve better!

You are beautiful and you are worth it!

If you don’t live it, you don’t fully understand!

Ahhh, it’s always such a joy to sit there and listen to medical professionals go on a preach what they think is best for you when they don’t know you or your history, limitations, or what your body and illness is like!

There isn’t one thing that works for all of those that suffer with a chronic illness like fibromyalgia. There are many different medications out there to “try” and treat it, emphasis on “try”.  Some of these medications do help some people, but they don’t help everyone. I, for example have tried so many of them with no relief, not even a little, or they had too many bad side effects. 

Now I have a whole list of things that happen to me with this illness, but I’m not totally convinced it is just from one illness. Getting doctors to actually listen and do something is beyond difficult. They all have a few certain things they will do, and won’t do anything else. They are all set in their ways, and don’t try telling them to do something different. Yes, I know that I am not a doctor, but I do know my body best. They don’t fully know what this crap feels like, or what it does to our bodies outside of what we tell them.

One of the set in ways of the doctors is exercise. Now I’m on board that everyone needs some sort of exercise, we need to move, but that’s not always possible for those with a chronic illness. Me, for example am one that exercise makes things so much worse, and I’m not talking about being tired or a little sore because you are using muscles that haven’t been used. I am talking about literally needing to be carried around, and not being able to move because of the pain. Laying in bed for two days because you are tried to exercise for 30 minutes. I am in no way a lazy person and I don’t want to lay or sit around all day, and most days I don’t. I’m not up running or walking a marathon, but I’m moving the best that I can or working at my desk. 

Now my experiences may not be the same as a lot of peoples experiences. I can not walk or stand for long, long being 10-15 minutes, before my legs get very weak and I get lightheaded and feel like I will pass out. On top off that my ankle, which is permanently swollen, becomes so painful and spreads up to my knee. So walking, running, standing isn’t always a good option for me. 

What are the suggestions or recommendations from the medical professionals? Exercise! The same old preaching. Inactivity is your enemy, you need to exercise even if it just walking on the treadmill 10 minutes a day. The problem with that is the treadmill is very different than plain walking, I walk like a limping penguin. Treadmills force you to walk and in a certain pace and style of walking, where plain normal walking you can pick your pace and style to walk.

They don’t accept that as a reason not to do it, they look at you as if you are making excuses not to do this. With the chronically ill these aren’t excuses, they are limitations in our lives. 

Here is an example of a conversation I had with a medical professional:

MP: inactivity is your enemy, you need to exercise. I want you to try to walk on the treadmill at least 5-10 minutes a day.

Me: That’s nice and for a lot of people that would be easy, but for me and a lot of others, that’s not possible as exercise makes are condition so much worse.

MP: you have to do something, you can’t be inactive and sit all day.

ME: I don’t sit all day, I walk around the house when I can, and work at my desk when I can. I’m not lazy, I do have days where I can’t do anything, but I do move around.

MP: well do you ever go to the store? Get out anywhere?

ME: Yes

MP: Then you have to walk, how long does this shopping trip last?

ME: It varies. Sometimes 30 minutes, sometimes a little more.

MP: So then you can walk! You shouldn’t have any issues.

ME: Yes, I can walk, but then again you are assuming that these trips to the store are easy. Sometimes just walking from the car to the store and my legs are done. I have to be holding on to the cart at all times in order to walk. Sometimes I’m leaning on the cart and resting. Sometimes I have to sit for a bit. And practically every time I am almost falling down, so weak and nauseous, and crying because my legs can’t handle the shopping trip. But yes I make it through because I have no choice but to do it. 

MP: uhhh.

They don’t like it when I prove that their methods are always the best. Most think that with a 2-5 minutes rest that you will be able to go for hours again! Sadly that is not how it works, especially for me! Resting makes it possible to keep going, but the amount of time you go keeps getting shorter and the more you push yourself the worse it gets! Sooner than later my body will refuse to go anymore and you don’t want to encounter that away from home! Now a car ride around does help you rest but not all the time, because you aren’t fully able to relax as it not extremely comfortable in the car! Once my body has enough and it gets weak enough it will literally shut down as in I will not be able to move my legs as if they are paralyzed, it happens way too often! That’s all a different story in another post!

You see with chronically ill people, we need to plan out everything. For example if I were to go and walk on the treadmill, I have to take in account for the flight down and back up the stairs, plus the time I spend walking. Now the flight up and down the stairs are enough torment for my legs that I won’t last hardly any time on the treadmill. We have to take into account where we are going. How long it takes to get there. The time we spend walking and standing. Add in the energy it takes to talk, lift things if needed, ect. We have a limited amount of energy for the day, so everything has to be calculated out precisely. There is always going to be someone who thinks that they know what is best for you and what you can or can not do! Sadly a lot of these people are chronically ill, I have lost count of how many times I have seen people yelling at others with the same illness that if they can do it, then you can do it! I am in no way saying that these medical professionals don’t know anything about the illnesses, they for sure study about it. What I am saying is that they really need to adjust their way thinking to match the patient! Everybody is different and not certain thing works for every person!

I’ve been told before that I am not doing things because of what I think or am afraid will happen.  Which is so far from true. I have learned a lot about my body & health challenges and know what my body can handle. It took me a very long time to accept all this and learn to pace myself and such! I have learn as we all have what our bodies can and can not do with these challenges. We all know our bodies the best as we are living with this every day!

So many people claim to know somebody that has this horrid illness and to know a lot about it and for sure some people do as there are millions of people out there suffering! Sadly some only claim to know and they don’t really care to learn anything or try to understand. I do understand that some chronic illnesses are very hard to understand, heck I don’t fully understand it all and I am living it!

What people don’t seem to understand is that even though we aren’t physically working or doing something, it’s still hard on our bodies! Social engagements, even if it only requires sitting on a chair or couch, it is a lot of work! The ride there, or if they come to our house and the time sitting and talking and focusing on everyone! It is a lot of tiring work to sit there and socialize, I’m not even sure if I could explain right how much of a toll it takes on our bodies! It physically drains our energy even if we are relaxed and comfortable!

I wish there was a better way to help everyone understand everything someone who is chronically ill goes through! It is even harder to explain when that illness is mostly invisible, so invisible that tests and such don’t show anything wrong, yet there is something very wrong!Maybe, just maybe we will someday figure out how to explain it all and even get some much need help and relief! Until then stay strong and pace yourself! Don’t let anyone make you feel bad for being chronically ill! You didn’t choose the chronic illness life, it chose you!

Transported by books

I love reading and getting lost in the books. My reading time kept seeming to get shorter and shorter, so I started buying audiobooks. It was so much fun to go to thrift stores and find really cheap audiobooks, transfer them to my computer and put them on my iPod. I ended up with quite a collection of books! Even though I had them all saved on my computer I just couldn’t part with the cds, so they were stored in my closet. I did eventually end up selling the all on ebay!

One day when I got the last job I had I learned that I could listen to my iPod and/or phone while working! I then learned of audiobook apps and signed up for a membership and started buying books, but I really didn’t want to spend that much on audiobooks I may never listen to again since there are millions of books to listen to! I discovered that I could use my library card and borrow audiobooks through an app. Wow, where have I been hiding? It was awesome and I thoroughly enjoyed listening to books while I worked. No it never distracted me from what I was supposed to do and I set a rule that I could never wear both earbuds at the same time, you know, safety first and I had to hear if someone needed me for something!

As you may know in 2017 my health challenges forced me to stop working, thankfully I have rediscovered my love for crafting and even opened an Etsy shop. I still continue to listen to books and I love getting lost in them. It is amazing how I will literally be transported into the story and it’s like I am watching it all play out in front of me! I love book series and as I get to know the people in the books, they become my friends, but then I kind of get sad when they leave as the series end!

I do not like romance in books or swearing, just clean fun mystery books. I discovered a Cozy mystery book site. This site is full of thousands of good clean books! I got so sucked into books related to the Amish lifestyle. I am fascinated with the Amish lifestyle (it sounds weird to say it like that, like it could be offensive, but nah, I just think to much!) The simplicity of the lifestyle and everything, I just love being transported there. Now I know that even though these authors do a lot of research about Amish living, everything in these books aren’t true to life, but it’s still amazing. I will tell you I could never give up my English lifestyle, especially my audiobooks and craftiness, computer and Alexa (I love Alexa, she’s how I hear my books & she is so smart too)! Maybe it is partly because I am fascinated by all humans, I like to study them and see how they live and why they do the things they do! We all do things differently and I love to just watch and learn and understand everyone! I am so content just watching and studying people! All humans simply fascinate me!

I will admit I hate that my library has set a very small limit on the books that I can borrow. Only 5 a month, what kind of craziness is that anyway, but I have found ways around that. You see with 3 different library apps that makes 15 a month. Now add in 10 more borrows as the one app gives you 2 partner libraries so that brings the total up to 25 borrows, you’d think that those would be enough, but nope as there is one app that has a much better selection than the others even though you are using the same library in each app, they are all different! How do you fix that? It is so easy, just use a friend or families library card! I have access to 2 other library cards, so that brings up my total borrows to 75!

Seriously, that is a lot of borrows and no I can not use them all in one month, but I sure do try. And then add in the fact that if you have Amazon Prime you can borrow as many prime books as you want and Alexa will read them to you! There were a few months that I didn’t/couldn’t listen to as many books as I would like to, but so far this year (2020) I have listened to 111 books and still have the rest of November  & December to go!

How do I keep track of what I have listened to and want to listen to you ask, okay maybe you didn’t, but I’m going to tell you anyway! One way is Goodreads, it sure is a great app/website that helps you track all you books and you can follow your friends to see what they’re reading and find new books! If you don’t know, I love organization and am constantly organizing and re-organizing! I went as far as to make myself a book binder and I printed out all the books I want to read so far and as I mentioned you can find a ton on! Then I just put an “X” by the books I have read and I have a 2nd way to keep track of all my books. They are separated all out by type of book and author! I can never remember what I want to read, so this makes the whole process so simple! I love making binders (especially 1/2 binders (5 1/2 X 8 size) for everything and of course bigger sized binders when needed, I guess they can’t all be small & cute! If you haven’t guessed already I love tiny things! I just got a tiny Jumanji game, it’s keychain size and it is so cute!

Do you like to get lost in books? It sure is fun to use your imagination to bring all the characters alive!

Happy place is still missing…

Back in November 2017 I lost my happy place! It was so peaceful there and I would instantly relax when I went there. This place was & wasn’t a real place! It was real as in it truly existed and I could see it when I looked out my window, and wasn’t real as a different version of it existed only in  my mind and when I was having a bad day, I could just teleport there and relax!

Sadly one day it went away! My first happy place (also mentioned in “My happy Place” blog from Nov 2,17) was a pond and I floated around in it dragging my hand over the water and it was just so peaceful. One day while I was floating around a huge shark flew out of the water and ate me! I couldn’t get back there. It is still a beautiful view and peaceful place in real life, but no longer in my escape world! 

I found a new place, this time by a lake. I would sit under the tree reading a book and enjoying the beautiful view. Sadly one day a bomb fell on me and bam happy place 2 was gone!

You probably think that this is just a repeat of the November 2 blog, but I assure you it is not. I found a new happy place, I was so happy and even though I have a huge fear of falling, this happy place was in a huge tree house high above everything. I could just sit there with my cats and watch the world. They didn’t know that I was up there and that was great! I’d just relax and watch all the people! Ahhh, it was fun while it lasted anyway, as I have lost that place as well, but this time I have no idea how! One day I tried to go there and I couldn’t find it, and I have no idea where it went! No note or forwarding address, just gone, it just simply vanished!

Once again I am searching for a new happy place and all I see is myself wandering around in the woods never being able to find my way out! Now I am not stressing that I can’t find a new happy place, but curious if it will ever come back! Have you seen it?  No, I’m not offering any finders rewards, just give it a note saying I miss it and send it back my way!

Hmmm, the more I think about it, it is rather peaceful walking around in these woods, maybe what I have been searching for all this time was the place that I am walking around in! It could very well be, but let’s keep that a secret between you and me as I don’t want to let the woods know and have something happen to this place!

I promise this wasn’t a trick to tell you that what you are looking for may be right in front of you this whole time, but hey if it turns out to be true, then that is wonderful!

I’m off to enjoy me walk, but don’t let the trees know!

Sometimes, I wish…

Sometimes I wish….

This is the area where I would normally write everything that goes along with I wish!

I wish I could….
I wish I could say….
I wish you’d listen…
I wish I would have said…
I wish I was heard….
I wish…..
I wish…..

I could go on and on , but let’s be a bit honest here it doesn’t matter much! It won’t change anything, ever. Nobody wants to hear it!

So instead I’ll just say I wish….

Why Susan?!?

It’s been a while since I wrote to y’all and with my 9 year chronic illness anniversary just passing (Feb 16, 2011) I want to introduce you to my friend Susan!

I have a friend named Susan and she isn’t like any normal friend because nobody can see her! No she is not my imaginary friend really, I can feel her presence more than I can see her. Actually I never actually see her, but I do know what she looks like.

Now before you write me off as some crazy loon who’s making things up, let me explain who Susan is and why she’s always hanging around.

Nine years ago I was injured at work and from that injury I was blessed and diagnosed with a chronic illness. I went downhill very fast after that injury as I was so used to being healthy and independent. I never asked for help and was always helping and doing things for others because that’s what made me happy! Feb 16, 2011 that all changed and I couldn’t handle it. I was sent to a pain program to try and help with all the excruciating pain that I was now forced to deal with everyday. Part of that program was talking to a psychiatrist and I honestly didn’t like that idea, but I had to do it. Turns out that she was very helpful and brought me back from the dark hole I was now living in.

One day she told me to imagine my pain. What did my pain look like? It only took a few seconds to imagine this and I then described it and drew it out on paper. What I saw was this little girl wearing a purple dress. Weird thing is she didn’t have any feet. No, she wasn’t a ghost, but she did just float around my body. As I described this girl I said that if I really listened I could hear her laughing. I didn’t like her laugh and I still don’t. She will just float around my body causing me pain and laughing about it. I don’t really like Susan, heck I don’t think anyone could like her.

As part of my treatment, my psychiatrist taught my some breathing techniques. What she would have me do is sit back, close my eyes, and focus only on my breathing. I would have to count to 3 as I breathe in and count to 3 as I breathe out, making my breathing even. The point to this was to be able to relax, and as I relaxed my body went more numb and I could just drift away from all the pain and trouble this horrid illness brought to me!

She next told me to imagine My pain leaving my body. The first thing that came to my mind was the ending of Beauty and the beast, where the beast turns back to a man. As I sat there, eyes closed and relaxed I pictured beams of light shining from my toes and fingers and Susan trying very hard not to leave me. But she eventually was gone, although it was only temporarily. Susan never stays gone, she always comes back and sadly I will never be able to get rid of her.

After all these years I have gotten used to Susan hanging around and that in itself is sad! I don’t wish a friend like Susan on anyone. Some days I can manage the pain and not notice too much that she is there. Although more days than not she is very noticeable and angry and causes way too much pain!

Even after 9 years I still have hope that my doctors and I will find a way to manage her more and make it so she’s not so angry and mean. I still hope for the day that I can say “Susan who?”

Have you ever pictured your pain and given it a form of some sort? Did you give you pain a name?

I do truly hope that you don’t have a monster friend like Susan! If you do, have you found a way to manage it, and keep it from acting up!

The nightmare of disability

I believe that I have made a ton of mistakes while applying for disability. There is so much that I wish I knew before starting the process. I knew that the first time I was going to be denied, I was prepared for that disappointment. I knew I didn’t have my doctors full support going in, she didn’t want me to really file and I do understand that, but sadly I didn’t have any other choice as I was unable to work and I wasn’t good at direct sales business being strictly online. I had so many questions and had no clue as to what I was doing.

I turned to google and chose the first lawyer I found that was reasonably close to my house, as I didn’t want to be traveling an hour to appointments as I no longer was able to drive myself. I had to start the process myself online. Then wait 3 months for the denial letter, to be able to set everything up with my lawyer. There’s is a lot of waiting in this process, waiting for files, and paperwork and waiting for the state or whoever to appoint a judge and hearing date. Then waiting for the judges decision.

My biggest mistake was not having my medical files so I could review them. The other mistake was not standing up for myself enough with the doctors I had seen. My primary care physician is amazing, but she can only do so much before the specialists have to step in. In my case these many specialists that I saw were not very keen on helping me. I totally understand that my challenges are confusing and hard to understand, but I can not get the right help or diagnosis without their help. I was past the small stuff of trying sleeping pills and physical therapy and they didn’t like that I wasn’t willing to try those anymore. I wanted more aggressive help, bigger than pt and sleeping pills.

For the most part these doctors were nice to my face, but sadly because I didn’t have my records before the hearing I didn’t realize how rude they were in their notes and how the falsified information and the downplaying of my challenges. Some even went as far as to write down the exact opposite of what I said. For example if I stated I needed a cane and walker to get around, they stated I didn’t need those items. They stated that I would claim my right side was having the most trouble, but later stated that it was both sides and therefore I was making it up, because clearly my challenges couldn’t possibly get worse.

Now I had had a couple physicians or their assistants say rude things to my face, but then I was able to defend myself. To have to wait 3 months after finally getting a hearing and thought it went good, then to see the denial letter totally full of lies and rudeness is enough to send someone over the edge! I do now have all my medical files, they’re are way too huge for me to be able to print them and try to prove these doctors wrong. Sadly I have no clue how to get this false information off my record because I no longer see those specialists, and some are no longer in the practice. I am very thankful to have found 2 amazing specialists this year and with their help have proved those doctors wrong and have gotten a diagnosis for 2 of my challenges I supposedly was making up.

Another mistake I made was not tracking my symptoms closely. I had started this when I first was diagnosed with fibromyalgia back in 2011, but sadly I got away from doing that. I tried off and on to keep track, but didn’t fully sink in until May of 2019. Now I have tracked what symptoms I face daily, as well as the different challenging episodes and when they occur. I have been able to show documentation to my doctors and that helps them be able to help me more.

I did take the time to go through the entire denial letter four times and write out corrections and what my life is like with these challenges and sent that and some of the tracking documents to my lawyer to be sent in with my appeal. Now comes more waiting to see if the will overturn the judges decision.

The biggest and most important thing I can tell anyone that is going to apply for disability with an illness that is hard to understand and mostly invisible is have and review all your medical files and get any mistakes or false information corrected beforehand. Also keep track of everything, I mean everything from symptoms to doctor visits to anything you might feel is important to prove your case.

I have no one else to blame but myself for not doing all of this earlier, I know I face the challenge of memory and thinking issues, but that should have made me try harder and use more notes and reminders. I know the whole disability process can take years, but the more you are prepared and have documentation, the better your case is going to be. I truly hope that my story helps someone out there to get better ahead of all you face with applying. I was so focused on getting a diagnosis and help than getting ready to prove all my challenges to a judge.

Sadly when you have an invisible chronic illness you do get so consumed with getting a diagnosis, even though you aren’t any closer to getting relief and help once you get the diagnosis. We get so relieved that we have something to call what we go through. But in all honesty we should be focusing on tracking and documenting everything to help our cause and in turn that documentation can help get the diagnosis we long to receive.

It is one nightmare I never wanted to have to deal with, but sadly I had to and it’s not even close to being over.

Im tired…

Saying I’m tired is an understatement for sure! But that is all I can think of to say right now! Besides that I’m drain like the kitchen sink!

I am tired of of having this illness!

I am tired of being tired!

I am tired of people not understanding!

I am tired of doctors not believing me!

I a man tired of doctors not even trying to help me!

I am tired of having to research my challenges!

I am tired of having to tell my doctors what to do!

I am tired of having to explain all my challenges!

I am tired of having to tell the doctors how to do their job!

I am tired of having to figure out what is wrong with me myself!

I am tired of hurting!

I am tired of being nauseous!

I am tired of being dizzy!

I am tired of being week!

I am tired of complaining, which in all honesty, I don’t do very often!

I am tired of not being able to work!

I am tired of not being able to drive!

I am tired of doctors telling me I need to do something and not giving me help or solutions on how to do it!

I am tired of not being able to do the things I could before all of this!

I am just tired!

This list could probably go on forever! How long will I be tired? Until they find a cure!

I’m not mad and I’m not depressed, I’m just tired! The other weekend I was getting a sleep study done, I couldn’t complete it because I was sent to the hospital because I was paralyzed from the shoulders down and was having trouble breathing. I had to tell the paramedics that I wanted to go to the hospital even though I didn’t want to go because I told the nurse at the sleep study that I wasn’t capable of making that decision so they decided for me, and I knew that everyone wanted me to go! They didn’t do anything like I thought, mainly because they just didn’t believe me. I told them that nobody ever believes me. They left me alone in the room for 2 hours just waiting for my parents! They were read your to send me home, but wanted to ask my mom and dad I forgot what I say I sent happening really happens. They confirmed it, so then they believe do me but said they could help me because there weren’t any tests they could that haven’t been done!

This was the worst episode and scariest that has ever happened. It started out with constant twitching and jumping as my whole body was restless. I couldn’t open my right eye or talk for at least 30 minutes. Then I couldn’t move anything from he shoulders down for for about 3 hours! Now normally I bounce back right away when these episodes end, this time it took 2 days to bounce back to my normal and then a flare came on of extreme pain and exhaustion.

That bring some me to the point where I’m just tired of it! I’m not done fighting, but I’m just exhausted and over it!

Sometimes I think about everything I have to deal with and get mad or sad, but I’m also glad, because sadly there are people who have it much worse! Sometimes I tell myself don’t even think about complaining about this as others have it worse! This is true, but at the same time, what I am going through it the worse that I have had to deal with and it’s hard and so it’s okay to break down once in awhile as long as you pick yourself back up and continue to fight!

So whatever you are going through it’s okay to scream, cry, get angry, sad, and depressed. Just know that you will get through this and get up and continue to fight!