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 Ndola 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 no it went good 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 to 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 the 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!

What do you see?

What do people see when they look at me? When people look at me they don’t see anything wrong with me. They see what appears to be a healthy normal person. They see someone that should be leading a normal life. Someone that should be able to go to work, or go to the gym. They see someone that should be able to drive, think and speak properly and be able to walk good or even run!

What do doctors see when they look at me? They see someone who looks healthy. They see someone who doesn’t appear to have anything wrong with her. According to medical notes that I have recently acquired they see someone who is dramatic. They see someone who exaggerates and they see someone who is unkept. They see someone who should be able to live a normal life as no test show anything wrong. They see someone who just needs a good psychiatrist. They see someone who has an opioid dependence because she broke down and finally asked for pain meds for the first time in 8 years! They see a lot, but sadly they are so wrong.

What do I see when I look at myself? I see a fighter. I see someone who used to be very independent. I see someone who is searching for answers. I see someone who used to be able to do it all. I see someone who wants to be able to live a normal life. At the same time I see a sad person, because she is no longer the independent energetic person she once was. I see someone who is tired of doctors bullshit. I see someone who is tired of being in pain. I see someone who is tired of all that life has thrown at her. I see someone who doesn’t want this new life. I see someone who just wants to be able to drive and go to work. I see someone who just wants to be able to enjoy life. I see someone who is hurt by everything her previous doctors said to and about her. I see someone who is determined to find answers and prove all those doctors wrong. I see someone who will not back down and will get the help that is needed.

When you look at someone you always what do you see first? You usually see things that are true and untrue. Fun thing is when you don’t know them you can make up whatever story you want about them. But sometimes what you see or think isn’t what they truly are. Looks can be deceiving and most of the time what’s you may think about them just isn’t who or what they are!

In my case I am not what some of my previous doctors thought I was. I am indeed sick and in desperate need of their help, and thankfully have had the blessing of finding 2 amazing specialists this year who not only are willing to help me, but also proved that the challenges I face are in fact real. I couldn’t be happier that I have found them. To most chronically ill people a diagnosis is one of the most desired things. But that is a far second desire to finding good doctors who not only believe us, but also want to and do help us get some much needed answers.

What do you see when you look at yourself? I truly hope that you see a beautiful, smart person who fights to make their dreams come true. Also I hope you see someone who doesn’t back down when others throw wrenches in your path and try to stop you from achieving what you are seeking.

Bad doctors

Doctors are supposed to be helping those that are sick, hurt, ect. Believe it or not there are very good doctors out there, I found 2 of them this year! But sadly there a ton of not so good doctors. The ones that don’t really listen when you talk to them. The ones that don’t seem to want to help you.

I have seen a fair share of the doctors that don’t want to help or even try.

I totally get that my health challenges are difficult to understand and find answers for, but does that mean you just don’t have to try? I don’t think so, but they think it’s okay to say “sorry I can’t help you”. What is even worse than the doctors saying “I can’t help you” is saying that and then writing in your file untrue and rude things.

I am in the process of fighting for disability, and it’s not going well. I didn’t really think that the judge was going to grant me disability l but I never expected what was written in the denial letter. This letter was so full of misinformation and downplaying of my symptoms. It is unreal that even the judge was doing it.

According to the specialists I had seen, four specialists said they couldn’t help and/or didn’t even try. They partially listen to what I said about what is happening to me, and most were sort of kind while saying sorry, can’t help, or I don’t know what is causing this. These doctors then went on to say in my file that I am a hypochondriac, they used the words somatoform disorder, but it’s the same thing. Every one of them said I just needed psychiatric help, that after I seek psychiatric help I would be all better. One even stated that my breathing issues were because I didn’t put any effort in to breathing.

They and the judge downplayed my main symptoms that keep me from doing a lot and stops me from enjoying life more. They stated that they while standing I occasionally get dizzy, while that is true, it’s more than occasionally and it is more than just dizzy. I get dizzy, lightheaded, overheated and feel like I’m going pass out while standing, walking. And even sitting. Now I didn’t know what this was until May of this year (2019).

My cardiologist, one of the good doctors, told me that I have low blood pressure issues, my blood pressure plummets while standing and sitting.

So all these issues that the others said was just in my head , not only has a reason, but a name, and it’s freaking real. These symptoms that the other doctors accused me of being dramatic about are something real and not at all related to fibromyalgia,

Next issue that was proven to be real was my breathing issues. These issues are due to two different surgeries. First surgery (thyroid surgery) cause my right vocal cord to be paralyzed. The second surgery (Nissen fundoplication) causes more swallowing issues called dysphagia. Now with these two problems it is difficult to breath 100% good. I did have to go to speech therapy to help with my breathing, and it didn’t help a little, but my breathing will never be 100%.

So there are two things that my new doctors proved to be real and not at all dramatic. What these other doctors put in file is very rude, wrong and should never have been written there.

Another thing said about me was that I had an opioid dependence. I finally broke down and asked for pain meds one time in eight years, ONE time! I get labeled as having an opioid dependence, seriously? According to those,doctors and the judges notes saying agreeing, I am a fat, lazy, dramatic hypochondriac that does put effort into breathing.

I mean seriously I wouldn’t given myself disability with what they wrote either. But sitting there describing what happens to me and to have it al downplayed and mocked is unbelievable. I have been fighting for so long to get help with these challenges, although I am happy that I now know why they are happening, I’m still very upset that these doctors had the nerve to be nice to my face and then turn around Andy talk shit about me. Did they think that I wouldn’t find out? I really don’t need think there is anything I can do about it,but you can count of me trying to figure out if I can or not.

I am so very thankful for the 4 good docotrs I do have, but hope to find more this year and hopefully get some help with my others challenges. The hard thing is when you see so many awful doctors, you kind feel like giving up on trying to find the good ones. They do exist, sadly it just sometimes takes a while to find them, but you will find them. So if one give up, make it temporary, then get back out there and find those good doctors.

At this time I am in the process of figuring everything out, I have received all my medical records, and will be going through each one, that’s a big task, but needs to be done. I will then figure out what my next move is going to be. Believe me I have stopped taking crap from these doctors already, but with the new information I have learned they will be sorry if they try to mess with me and my health again! Nobody should have to deal with this or put up with it. Something has to be done!

Speech challenges, why does it happen?

I am always amazed with all the symptoms that go along with fibromyalgia, and most of them we never really find out what causes them. I never find out what causes them. We just throw them into the mix of everything fibro, the endless pit of symptoms, pain being the main symptom we all experience.

There are over 200 symptoms that go along with fibromyalgia, there are 3 main symptoms that I have the biggest problem with, and those are pain, nausea and speech challenges. Did you ever wonder why we have these symptoms? Let talk about speech for instance, we all have speech challenges, we can’t think of words that we normally used on a daily basis. We have issues with remembering things like names, what we are doing, ect. Heck, I forget what I’m doing while I’m doing it. lol It gets very frustrating to say the least. It makes me feel like this challenge is a direct reflection on my intelligence or competence, which it’s not, but it’s so hard not to feel that way. I feel the need to explain why I can’t speak correctly or think properly.

Our brain processes pain first and everything else becomes secondary to that. Those of us that suffer with fibromyalgia are in constant pain, so when our brains are being bombarded with pain signals it’s hard for it to focus on all the other signals like speech. Who knew it was that simple? While this won’t help the situation, we can at least take comfort in knowing why it is happening.

I am always hoping that this challenge never comes up when meeting people or out with friends and family as I feel unintelligent and you know the people in this world are constantly judging everyone, but we all have our own issues and nobody is perfect. Even though I will never fully be comfortable with this challenge I know that it’s nothing I personally have done to bring it on and there is a very simple explanation for it. We don’t owe anyone any explanation of why we are the way we are, but I do understand the want to explain it.

This illness is hard enough on us, we don’t need to be hard on ourselves for the challenges it bring along with it. We should try to remember this is not our fault. We did not cause this or ask for it. I mean really, who would ask for this, right? If you feel the need to explain this challenge then you have the simple explanation as to wh6 it happens. Please do me a favor though, try, just try to take it easy on yourself, you deserve some kindness with all you deal with, why not start with being kind to yourself.

Gentle hugs my warriors!

Support and understanding

When we get sick with an invisible illness the one thing we seek for the most besides someway to help with the pain and other symptoms is support and understanding.

Now there are many ways we think the people in our lives should support us and we get mad at them when they sit there and say, “well if you would…” or “maybe if…”. We hear it all the time, you should get out more. You should exercise more. Maybe if you cut out carb or gluten. Maybe you have this wrong with you. Maybe if you just…. the list literally goes on for miles.

Now it’s easy to understand and support some who got in an accident and is hurt but will mend in the near future. It’s easy because they know what needs to happen to get to the point of recovery. With chronic illness it’s different. There is no one thing that is going to help. Most of the meds that they say are for the illness doesn’t always work. There is not a certain medication that’s helps all who suffer. The painful truth is everyone with a chronic illness suffer differently, yes we all have common symptoms but we are oh so different at the same time.

With all these outside suggestions we get angry and frustrated. Yes we want them to help or understand but we don’t want these suggestions because we know they won’t help.

What we don’t understand is that maybe this is what they need to do to cope with all of this. We are so concerned with how we are doing that we never think of how are our family dealing with this? I know it’s not easy with all we feel and deal with to think how does my family feel? Our family and friends are just as angry and frustrated as we are, because all they want to do is help us. One way they try is to go through all the different may help us. Is it frustrating, yes, is it annoying sometimes, yes, but it is their way of trying to understand and deal with it.

They don’t know for 100% what is going on with us or how any of this feels unless they feel it themselves, they are trying to figure it out. All they want to do is to be able to heal us get better, no, there isn’t a cure, but we can manage some of the symptoms. Our family are used to circumstances where there is a way to fix it, and that’s what they are trying to do when they suggest these options. We tend to look at it as an attack sometimes because these things get mentioned so many times by so many people.

We have to try and remember that these people are just trying to help. We need to help them understand more about our illness and what it does to us. We can do that by sending them a link to good articles about our illness. We can show them some videos of other discussing it. We don’t want to get too technical though, they may get lost in that! Instead try to focus on how the illness affects you as a person, you may want to say that because of this illness you are more susceptible to infect, so you have to be more cautious. You may say that some days you feel like you got hit by a semi and somedays you feel great and can function almost like a normal person.

Yes, there are going to be those who just don’t care and keep throwing out those insane suggestions. I still get preached at by doctors what they are trained to say, because they don’t fully understand my illness. I still get annoyed by that, but politely say that what they suggest doesn’t work for everyone and I talk to hundreds of people with this illness and understand more of what works and what doesn’t, I’m not being lazy or giving up, I just know what works for me because I know my body best and have learned what it can and can not do with this new life.

There are many ways to simply describe some of what we feel with our illness. I have come up with after a lot of thinking a way of describing some of what I deal with, as one question I get the most is, what is it like to have fibromyalgia?

I tend to say, imagine being sick, the worst flu you’ve had, stay up for 3 days straight, and now throw yourself down the stairs. Live with every day, don’t forget to throw yourself down the stairs once you start feeling even a little bit better. This is just one way I use to explain it.

I also always get, “I don’t know how you do it!” To that I say, I wasn’t given any choice.

What is one way you explain your illness?

It’s not your fault!

It’s not your fault that others take out their problems on you!

It’s not your fault that people decide to be rude instead of being nice!

It’s not your fault that find faults in you when it’s them who have the faults!

It’s not your fault that your job assignment ended early!

It’s not your fault that people are misguided and call you worthless!

It’s not your fault that others don’t listen to you!

It’s not your fault that they talk over you like you’re not there!

It’s not your fault that they don’t understand the troubles you face!

It’s not your fault that they get mad at you for telling the truth!

It’s not your fault that they refuse to understand you!

It’s not your fault that someone started liking you a little too much!

It’s not your fault that other mistake your simple kindness as more than kindness!

It’s not your fault that the world is a hateful place!

It’s not your fault that they always look for a fight!

It’s not your fault that they decide to take their anger out on you!

It’s not your fault that you are too scared to stop talking to someone!

It’s not your fault that you are too scared to leave someone!

It’s not your fault that they threaten to kill you if you leave or do something they don’t like!

It’s not your fault that they say you need a therapist then call you stupid for trying to see one!

It’s not your fault that they always disagree with you!

It’s not your fault that they always have to argue with everything!

It’s not your fault they feel the need to correct you all the

It’s not your fault that they are abusive!

You are not worthless!

You are not a burden!

You are not a mistake!

You are not a problem!

You are not ugly!

You are not stupid!

You are not crazy!

You are not broken!

You are beautiful!

You are amazing!

You are smart!

You are kind!

You are worth it!

You are strong!

You are perfect in your own way!

No amount of love will inspire them to change! There is nothing you can do differently to change them. Repeat that to yourself. Abusers has a distorted perspective of the world!

It is not as simple as turning off the computer or closing an app to escape these people or their words! It’s not as simple as “why don’t you leave them?” Think of it as a mouse caught in a sticky trap, you struggle so much with being stuck there and the harder you try to get away, the worse it gets. Sure the mouse may eventually get free but it will lose a leg or two. It is never as simple as someone who hasn’t experienced says it is!

I believe you!