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!

Put me down

Why do we always put ourselves down? That sounds weird, let’s read that again, nope still weird.

The other day I shared my blog about “Am I mad” and while writing the post I added “now I’m not a professional writer”, but why did I have to say that? I could have just said I haven’t written in a while here’s my latest and I felt I needed to share it. That’s simple enough, but no I had to add that little snip at me. Now I used to be able to write a document perfect, with perfect form and punctuation. Somehow through the years I have lost that skill. I took classes for it and work in many office setting to use the skill and wrote some stories myself. But now I have no clue how to even begin to make the perfect document or story with the correct wording and punctuation.

I have lost that skill and feel the need to point it out. I think that once people read my stories that will have no problem seeing where I have messed up, but I had to say it. Maybe I said it so that someone else didn’t have to. Do you think that’s why we put ourselves down? So others don’t have to? In this world I find people have no trouble saying rude things or taking criticism to a whole new level to where it crosses a line. I wish that line could be built into a wall, so people would run into it when they were about to tear someone down. Maybe then we would stop being so rude and critical to each other.

The saying so true that we are our own worst enemy. I’m positive that I Am not the only one who does, says or writes something and thinks of everything someone else could say bad about it. We probably think it sounds better or hurts less if we say it to ourselves instead of hearing it from others. Wherever it comes from I truly hope that we find a ways to end this cycle.

If you can believe in Santa Clause for 8 years, you can believe in yourself as well! Just trynthis next time you do something well or heck something at all, say something positive about it or yourself. Say hey good job, I like that, or anything that is more uplifting rather than hurtful or negative.

Imagine this a day where you think or saying nothing but positive words or thoughts. It’s amazing who much better your day will be, as I write this I realize that it’s not always that easy, but it is doable.

Let’s try it!

We are breaking up…

Dear chronic illness,

I am writing this letter to inform is to inform you that I am breaking up with you. I could say that the past 8 years have been fun, but that would be a lie. I’d say I have had a good run at this and realize it is just not for me. So really it is true when I say it’s not me, it’s you. We are just not compatible as you would like to think.

When you first came into my life I thought, hey this can’t be all that bad, well it was in the beginning, but I could have sworn it would get better. Boy was I ever wrong. Hey, it happens, sometimes anyway! You have been nothing but trouble, always taking more than you give. You are just so very selfish and uncontrollable. You don’t care about anyone but yourself. You have taken so much from me and never given me anything good.

You have continued to push me down and hurt me no matter how much I begged you not to. You just don’t care. How can you not care? What are you like this? What have I done to deserve all this hate. I know that I didn’t really do anything to deserve this, and this is just who and how you are. You relentless torture is really getting out of hand and you must be stopped before something even worse happens.

It’s about time that I take control and stand up to you for I am tired of the pain. I am tired of you taking everything form me and not giving a shit. I am going to fight to get my life back. Hate is a strong word, Mr. Cooper, but I can easily assure you that I definitely hate you with every fiber of my being! If you are on fire and I had the only water to put it out, I’d drink the water!

This is a love/hate relationship with more hate than love, because let’s be honest here who could ever really love you? Now I do want to think you for helping me find some of the best people I have ever met, but you make me exhausted, very painful and feel like I’m a failure, so thank you and goodbye!

If only it were that easy huh??

Failure

Ever sit back and think “what the heck am I working towards?” Or “why am I such a failure at life?” I’m sure that everyone has at one point in their lives. That’s how I’m feeling right now.

I feel like anything that I’ve wanted for myself just isn’t going to happen. It’s like I’ve reached for the stars and forgot to stabilize my ladder. Everything I’ve wanted to accomplish is no longer a dream of mine. All I aspired to be is gone. It is like my garden was growing wonderfully just to be eaten by a bunch of bunnies and it’s refuses to grow again.

Now I always say that you are never to old for a new dream or to accomplish your goals, but what happens when it seems like everything around you is caving in you and you forgot your shovel or rope to pull you out? All these attacks and my shield is wearing thin like it will break at any moment.

I feel like I’ve had so many failures in my life that I don’t know if I will ever see the bright side of it. I keep searching for it, but it never shows up. Maybe, just maybe it’s truly there and I have just forgotten to take off my sunglasses. It doesn’t help that 8 years ago as you know I was gifted a very painful chronic illness that has set me back so much. It feels like I am learning to talk and walk all over again with all the crap that this illness brings. It has taken my independence and so much more away from me.

There really are plenty of things that are going right in my life. I have a supportive family. I am upright and sniffing the air, that always makes for a good day. I have my fur babies, who I would be lost without them. I have been successfully breathing for all these years, even if it did take breathing therapy to help , it’s still a major accomplishment. But in all seriousness, there is a grand canyon sized hole that’s is missing in my life.

I have to continue to have faith that all this dirt caving in on me will eventually stop and I will be able to climb my way out of this hole. I know I will keep getting up no matter how many times I have been knocked down, but it’s never easy to stay positive through all this.

I don’t know how many more breaths I get to take in this life, but I do know that as long as I am breathing I’ve got a chance to make the necessary changes.

What do I really want out of life? I am honestly not sure at this time, besides being able to care for myself and be independent. That’s possibly part of the problem, because no matter what I worked so hard for, it kept getting taken away. This doesn’t do good for a person’s positivity or best outlook on life.

I wake each day in fear of another boulder being thrown down on me, and that’s not a good way to live, but in all honesty that’s not easy thing to get over.

Am I a failure at life? No, because I am still alive and breathing. I haven’t failed at everything as I am still fighting and pushing through it all. Nobody is born a champion or a legend. Everyone always asks you what you want to be when you grow up and I seriously didn’t really know what I wanted to be in life besides successful until later in life. I have always been passionate about helping people. I am so good at listening and seeing both sides of every story, even without knowing everyone involved. Sadly I didn’t have a right support system, so I let that stop me from pursuing my dreams.

Unfortunately these days I have this illness to thank for not pursuing them as I can not comprehend things fully like I used to be able to. I don’t let this fully stop me as I am doing the best I can with what I can do. Sad thing is I am very good at being everyone else’s cheerleader, but never my own, and that is something that I know will never change.

In the end as difficult as life gets there is always always something to be thankful for. There is a reason we are all here in this world, but sometimes it takes us a while to figure that out! I truly know that there is someone out there so happy just knowing that I exist. I know that no matter what is thrown at me that I will continue to fight and get up each day and reach for the stars, right after I stabilize my ladder.

Never give up, we need and someone is so happy that you exist! 😘

Am I still mad?

Things come to me the weirdest ways. I dreamt that I ran into someone I used to work with at the place that caused this hell I live with. They asked me if I was still mad that I was fired. That got me to thinking. Am I still mad?

Let’s find out by reading this story.

Back in 2014 I was fired from a job that I had put my blood sweat and tears into for 10 years, and there was no reason given. I know why I was fired, but they won’t ever admit it. I was fired because I was injured on the job in 2011, and from the injury I developed an illness (Fibromyalgia) that not many people understand, there is no test for this horrid illness, it is diagnosed by 18 pain points on your body, health history and tons of tests excluding everything else. I was off work for a couple months before going back part time, then my employer hired a new HR person. Now this is a very small company, and they tend to get away with a lot of things that they shouldn’t, some even illegal as I watch this new HR person work. Now I am not a expert, but I have worked in enough office environments to know what is good and what is not! Anywho when she started the first thing she did was threaten to fire me if I didn’t go back to full time. My mistake was to actually do it, I should have said “screw you” and walk out as I couldn’t handle working full time, but their workman’s comp doctor said I was fine and probably not injured at all!

I could barely move and test after test showed nothing, yet I was miserable. Still to this day that spot in my back hurt tremendously and no test show anything. It took a very good psychiatrist to bring me back from the black hole I crawled into. I somehow got to the point where I could tolerate moving and continued to work there. Big mistake, this HR person made it her mission to make my time there miserable. Every chance she got she would try to fire me, or ask someone if she could. She would put me down and swear how stupid I was because the new fingerprint time clock wouldn’t work with my fingers. It didn’t help that I repeatedly said working with so many adhesives all these years have made my fingers difficult for those things. Things got so bad that I would literally cry driving to work and have to pull over to vomit. It took everything I had to make myself go there everyday when I knew all that was waiting for me was more hatred.

Why did I stay? Good question, because since getting this illness my fears have multiplied. I was afraid of starting over at a new job. Interviews terrified me. I would have to explain what is wrong with me, and even after 8 years, that is hard to do. I thought nobody would want me since my ability to work was unpredictable. So I stayed and suffered. Then one day she came and asked to talk to me, and dropped the bomb, “you’re fired, get out”. She waited for the day that the boss (there were 3) that loved me so much wasn’t there and got the boss that hated me to agree, and I was gone.

Was I mad, yes, but only because I wasn’t given a reason. I was also happy to be gone from that hell, I needed to get out, that place was literally killing me, no joke. I applied for unemployment, and thankfully they were smart and didn’t fight it, and I took a much need 3 month break from everything. I needed that break to recharge and recover from that hell I was in. That place was evil and so hateful, I felt myself turning meaner and I wasn’t liking it. It is so true that you become the environment you work in because I was turning about as hateful as they were, and that’s not good.

After my break I took the first job I could get, working as a greeter at Sams Club, not really the best place to work,but also not the worst. I unfortunately didn’t get hardly any hours as a greeter and moved up to cafe. I swore I’d never work in food, but there I was in food, and one of the busiest clubs around that I’ve seen. I quickly got used to having to run the whole cafe myself as help was hard to get. Heck, my first night the other closer called in. There is so much work that goes into working in the small food box. I learned to be very fast and efficient in my work, soon I went up from there and started doing orders for the cafe and inventory. But that meant working in the freezer and my hands couldn’t take it. They went white and oh so painful. The job eventually got to be too much, along the 30 minute drive. I started looking for a job closer to home.

Thankfully I found a job 7 minutes and 4.2 miles from my house, the perfect job. This job didn’t pay as well as others but it made up for that in the fact that it was so very easy and light duty. Boring at times, but they allowed me to wear headphones and listen to my books or music. This place put every other job to shame with how caring and nice they were. They loved me and taught me more about the job and gave me opportunities I was never given at any other job in the 20+ years I’ve been working. I was given training and advanced to quality control and training employees on the various jobs as well as writing up the training sheets. I was given the opportunity to work directly with the owners who actually valued my opinions. I have never worked in a better environment in my life. One boss would come out every afternoon and check on me to see how I felt and how things were going. No other boss has cared that much before. Sadly that all came to an end in January 2017, in early 2016 I started having worse symptoms including extreme weakness and losing the ability to move my legs and arms. It started out happening occasionally, but soon the episodes came more frequently. I had to call to get a ride home half way through work night about 2 to 3 nights a week. Sadly no test showed anything was wrong and still doesn’t, yet I continue to suffer. Then the biggest episode in 2017 lasted on and off for about a week, I wasn’t able to go to work. I had to file for fmla and lost my job when that ran out because sadly I couldn’t go back to work until I was 100%, no issues, and that hasn’t happened yet as I have never fully recovered yet from those episodes!

My employer told me he hated to let me go and my job was there if I was ever able to come back. I about cried because he cared so much. I felt so bad I wasn’t able to work there anymore. I still feel bad as I loved that job. I loved it so much that even though it took me 7 minutes to get there, I found myself showing up 30 minutes early. Any other job I would hide in my car until the last possible moment. I don’t think that I could ever express the gratitude and love I have for this company and how much I enjoyed working there, and how they made me feel wanted.

So am I still mad? Hell yes I am. Not because I was fired, but because of them and their hatred and unwillingness to give me any kind of help I was injured and got this horrid illness that took so much away from me and ended up taking my most loved job away from me. I am stuck not being able to work, drive, function properly and most of the time not being able to read or comprehend anything or even speak properly. I will spend the rest of my life hating that place for what it did to me. And more than likely spending the rest of my life wondering if I should have sued them and when is it too late to try.

Signing off

Mad and broken forever! 😔

Spare tire

I feel like a spare tire! You know the one that’s tucked away In the truck of your car or underneath it or on the back of it! Wherever it may be that’s what I feel like. You rarely need it, but it’s always there just in case. I mean I’m not writing this for pity or anything like that, just that sometimes I don’t feel I have a real purpose! I can’t drive or work or even do a lot of fun normal life things. I can’t do major house cleaning or repair work. I can’t get up and run around or go shopping or help others with big things. I’m just there in the background watching and listening to everything and everyone around me. Since I can’t project my voice well I am often ignored and overlooked. It’s not really anyone’s fault because if they can’t hear me talk they won’t be able to listen.

They don’t really mean to ignore me. I get so tired of just watching and listening to life happen. I feel so useless most of the time because I can’t do all the things that I used to do, and that was pretty much everything! It really bothers me sometimes when I hear of everything to do, the things that I took for granted before I got sick. You know like work, friends, spare time, cleaning and organizing, driving, and working towards a big goal.

It makes me sad when I remember what my life used to be like and is like now. I won’t ever have a house of my own to fix up and enjoy! I won’t ever be the main beneficiary of anything as I can not take care of myself. I am stuck being dependent on others, having to ask for rides if I want to go someplace, even something as simple as opening a jar or walking up stairs. They don’t really like to leave me alone, so I’m asked to come along and even if it’s getting together with family I feel like the odd one out, just along for the ride, and to listen to them all talk. I can’t contribute in most things anymore because of the horrid illness and not being able to work! I’m just here taking up space needing a little air once in a while just to stay right incase I’m needed at some point like that spare tire! Just make sure you check on me once in a while to make sure I didn’t fall out and roll away!

Life is too short!

Life is way too short to spend with people that make you feel anything less than amazing!

If someone does something that makes you feel uncomfortable, tell them. If they continue to make you uncomfortable, walk away! It isn’t wrong or a crime to walk away from people.

We seem to spend so much time trying to change others, or wishing they would change. The truth is we need to stop trying to change them and/or stop wishing they would change and just walk away.

The people we are longing to eat and spend time with are out there longing to meet people like us. We spend so much time trying to change people into who we want them to be that we forget that there are billions of people in this world and the people we are trying to make are out there.

Stop trying to form others into something, they aren’t clay, they are who they are and always will be.

Leave, run and you will find the person you’re searching for!