My Life Abbreviated

My Story Goes Something Like This:

I have recently been diagnosed with an incurable disease. In my journey to this diagnosis which feels like a final diagnosis amongst many abbreviated diagnoses’ lead me to feel like I needed to reach out to others. This condition is an invisible illness, one that makes me a member of the chronically awesome crowd, a spoonie, a silent sufferer if you will. These too are terms I am just now learning. This is not my first blog and although it will repeat a lot of what I have already written, it will leave some out. Because there are some parts of my story that I have told which required me to remain anonymous. I no longer want to be unknown. So, I suppose I should edit some parts out.

Please note: If there are any people close to me who read this blog and their feelings get hurt in any way, it is not my intention but simply the way I felt at any given time. I think if nothing else in this country we live in, we are still allowed to have our own opinion and we are still allowed to voice them. With that being said let me start.

First of all, let me do something I have yet to do in this writing journey which is introduce myself. My name is Melissa and I am a proud mother to 5 great children. (See picture above of a rare moment which we ALL smile for the camera together) I love them with every fiber of my being, but if you are a parent you will understand my repeateded need to vent about them from time to time. Parenting alone is enough to drive many people crazy. I’m just wingin’ it here. Hopefully I don’t mess them up in any way because in this life I think it is the most important thing I’ll ever do. Raise them to know they’re loved, to be able to love themselves and others, to learn hurt and how to recover, to learn hard work, and to learn to have fun in life. And since they are mine, they’ll have to learn to learn from their mistakes. Lord knows, I’ve made many. But I think those mistakes are the ones I learned the most from.

This blog is about my daily struggle with mixed connective tissue disease and all of the other abbreviations I have been diagnosed with along the way. Isn’t it crazy how we abbreviate so many things? Like, is it really too complicated or too much work to just come out and say the words? My son has started this new thing where instead of laughing, he says, “LOL”. Really son? Isn’t it easier just to actually laugh? You know, OUT LOUD? He’s 14 and thinks he’s really cool so when I say things like that to him, I’m just not cool enough to know that saying “LOL” is cool. One day when he’s much older and wiser he will realize how stupid some of the things he does at this stage in his life are and he will look back and LOL about it.
So what lead me to decide to start a blog? Well, abbreviations of course. I’ve been given many. Some stuck, some have not. But almost every single one that I have been given has been a struggle.

 

It all started in elementary school when I was given a test for ADD/ADHD. I passed this test. Or some would say failed it. I guess it depends on whether or not you see it as a glass half full or half empty sort of thing. I mean, failing tests was what caused me to be tested in the first place, so this time I considered myself having passed this one. I had an answer, or at least in my little mind, I did. I knew now why any amount of studying I did wouldn’t show in my test and why my friends had better grades than I did even though I never saw them study.
I was going to finally fit in I thought. This magic medicine will solve everything. Boy, was I ever wrong?

 

My principal wouldn’t even accept that I was ADD. “She doesn’t have ADD, she’s such a pretty little girl” she would say. “You need to have her retested, they got it wrong”. Being diagnosed with ADD in the 80’s was a different ballgame than it is today. Note that I didn’t say ADHD. Yes, friends, I have never had a hyper bone in my body. I wish sometimes that I did. That way I didn’t procrastinate as much as I do, or maybe I would have the energy to do the things my mind wants to do, but I just can’t. I have no reason as to why, but I just don’t follow through with things as I should. I’ve been wanting to write a blog for the longest time and I just haven’t. And I don’t have an excuse.
This blog is going to cover so much more than ADD. This is just where it all began for me. So this is what I am going to start with today. I can’t cover it all in one day. My body will no longer allow me to sit and type for too long and my mind jumps from one thought to another so keeping up with me from a reader’s standpoint may prove to be challenging if I didn’t keep each post short and sweet.

A.D.D. Attention Deficit Disorder
L.D. Learning Disability
GM General Manager
SR Sales Representative
TMJ Temporomandibular Joint Dysfunction
DSM District Sales Manager
C.O.P.D. Chronic Obstructive Pulmonary Disease
G.E.R.D. Gastroesophageal Reflux Disease
FM Fibromyalgia
A.D.H.D. Attention Deficit Hyperactive Disorder
R.A. Rheumatoid Arthritis
FM (again) Fibromyalgia
M.C.T.D. Mixed Connective Tissue Disease

As stated before I am almost positive I have left some out, but you get the gist of it. Those last three have been the hardest thus far and they are what have led me here to write this blog. Because I don’t know anyone else who suffers with this right now, I kind of feel alone with it. And I don’t want a pity party, but I do want to know what is normal. Am I normal? I know I’m not, but am I kind of normal? These are the questions you ask yourself when you have been doubted by so many. Even the very doctors that eventually came up with these diagnosis’. Sometimes, even my own family. So why wouldn’t I question myself?

 

Winter is Over

I haven’t been writing much lately. I have found myself constantly trying to venture into new areas in an effort to continue to be able to work from home so I can afford my insurance and stay my version of healthy.

I have been working for a company for going on two years and business has all but came to a stand still. Because of this, I am not getting over 20 hours a week. This takes a good toll on your bank account. Not only that, but stress levels are through the roof.

Stress causes disease to grab hold of you and beat you like a drum. Not only that, but the rain season began and that alone can cause pain levels to be astronomical.

For those of you who follow my blog, you know I am a TV fanatic. I can live without a lot of things in life, but my TV is NOT one of them. When pain and stress take hold of me I find myself getting completely immersed in TV. I have found a lot of good shows to binge watch. Two of the latest: Outlander and Peaky Blinders.

Let me tell you, these shows have blown my mind. They are so creative and they really pull you into their world. The stories are very well written and the characters and the actors that play them will knock your socks off. If you haven’t watched either of these shows, do yourself a huge favor and get busy doing so. Outlander is set to come on Netflix May 27th and Peaky Blinders is already there. You can thank me later for these recommendations.

Last night, one of my other favorites, Game of Thrones, came to a final end. There are so many people mad about the entire last season and the writing and I for one, don’t understand. I mean, this is a TV show and the one thing that has kept people so immersed in the show is the element of surprise. Sure, I think Jon deserved a higher purpose but he got what he wanted. He saved the world and got little to no recognition for it. He’s never wanted that for himself and if you followed the show you know this.

Still, the shows ending leaves a large gap for viewers to fill. There are said to be spinoffs and I hope they aren’t as long awaited as the final season was. I can’t wait to see what they have in store.

Changing subjects, I have also been back to doing surveys to fill the time and make a few extra dollars. One new one I have found that I didn’t previously use is Survey Junkie. It really is self explainatory but you basically find surveys you want to take and earn money upon completion. You can choose to get paid via PayPal so it is a win, win. Please take a look if this interest you and don’t forget to use my link when you sign up.

https://bmv.biz/?a=2510&c=1&s1=

I am off to do some more job searchin’. I hope to use more of my spare time to write more. I am also in the process of opening my own store. It is a lot easier said than done and will always be a work in progress but please take a peek and let me know if you have any suggestions as I really do need help getting the word out in the cheapest way possible 🙂 The website is dontabbreviateme.net.

https://dontabbreviateme.net/

https://dontabbreviateme.net/

Hope you guys have a great summer! Stay Cool and most of all BE WELL!

Trapped By Illness

Have you ever been somewhere that you really really didn’t want to be?  All you can think about is the moment you get to leave. The feeling of slipping back into your pajamas when you get home and hitting the bed like a ton of bricks. The random thoughts that run through your head –  this time tomorrow, I won’t be here. In just three more hours this will be over. This is just a few hours out of my entire life, I can do this.

 

Now, imagine that feeling for the rest of your life. Only you aren’t somewhere you don’t want to be. You are just trapped inside your own body which is breaking down at every single turn you make. You can’t even find a comfortable position to lay and exist in bed. It is miserable.

 

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Not only are you overtaken by pain from doing merely nothing besides waking up, but you know all of the things you should be doing are going undone and it is all your fault. You know you look lazy, crazy, and useless to the people around you but you have learned to just accept this label. It’s not fair, but life isn’t fair. This is a saying I have said to my kids more times than I can count and it has come back to bite me tenfold. – “Life’s not fair.” “The only fair you are going to find in life comes to town once a year.” “You buy your tickets and you ride your rides and that’s all the fair you get.” I don’t even get that. I can’t walk around a fair. I struggle to walk around the grocery store.

 

My 16-year-old son does all of my grocery shopping. I haven’t been to Walmart in months. I am so grateful for him doing this task for me and he will never know just how much. I think about how quickly they go from 16-year-olds to adults living elsewhere and think that by then my house will be clean. By then I will be able to do my own shopping. And then reality hits. By then, I will probably be worse off than I am now and I won’t expect him to do my shopping anymore. By then, what the Hell will I do?

 

I think when you spend so much time accepting the things you can not do it causes you to put off even the things you can do. For instance, writing in this blog. I keep putting it off and I don’t have a reason why. If I’m being honest, writing here is comforting because I am hopeful that sharing my feelings causes someone out there who is having the same life struggles to feel less alone if they stumble across my blog. I am holding on to the fact that my inability to do what I want will somehow encourage others.

For several months I have been trying to build a store in Shopify that piggybacks off of my blog. So far, it has only been a hobby which I am constantly trying to make profitable.  I have never sold a single thing but I am learning a great deal about what to do and what not to do as far as designing goes. If you have time, check it out HERE.

 

I know this has been a short post and the posts haven’t been happening a lot lately. I do hope to change that very soon. If you have time to leave me a comment, I really do enjoy hearing from others just like me. I hope you all have a Happy St. Patricks Day!

Why the Government has NO place in Healthcare

Living with a chronic illness, particularly the silent variety, is enough to drive you mad. As if the illness itself wasn’t bad enough, you also have to talk your doctors into believing you. We live in a world now where one feels comfort in finding out they have a diagnosis, no matter how bad. I remember feeling the overwhelming feeling of happiness followed by a sucker punch of every bad feeling under the moon when mine was handed down. Finally, I found a doctor to believe me. Finally, I found out I am not, in fact, crazy or making it up in my head. Finally, I wouldn’t be perceived as a pill seeker. Finally.

Cue the affordable health care act. You see, now that I had a diagnosis, that also meant doctors knew which forms of treatment to try. This meant more trips to the doctors and specialist which meant I would come to better understand my insurance plan. I would come to know that the insurance I just trusted would have my back, didn’t. I would understand that the state I have lived in my entire life blocked the part of the health care act that might have actually helped me in my situation at the time. I would learn that there was much more to learn.

 

I believe that there needs to be an answer to better healthcare in the United States, I agree with Obama there. What I don’t believe in is rolling something out to the people that isn’t ready for market. This isn’t clothing or something material. This is the care given to people who are sick or to prevent them from becoming that way. This is about not killing off your people because they couldn’t afford healthcare. Politicians have no place in my health care benefits, decisions, plans of care, or any other aspect of it.

 

If the state of NY can say that a womans choice is hers and hers alone because it is her body and they can approve killing babies that would very much be viable then why on God’s great Earth can’t men and women decide who or what forces their health care providers and insurers to make the choices about THEIR body? Are we really saying that the murder of babies trumps the rest of the country’s ability to receive medications or treatments that would greatly benefit their quality of life?

As if politicians weren’t enough obstacles to overcome we now have a new epidemic.  A few weeks ago it was time for my three month check up which I have had to go to for years. Each visit is to discuss my treatment and any needed prescription changes. Additionally, because some of the medications I take were controlled substances, I would need to attain three months of refill prescriptions. Every now and then, and also unannounced for obvious reasons, I would have to fail a drug test to prove I was actually taking all of the medications that were prescribed to me. If you have ever had to remain on medicines like this, you have been through this as well.

 

Given my frequent flyer miles visiting the doctor’s office every three months, you would think the information I was given regarding my medicines wouldn’t have come at such a surprise. You would think that what I am about to tell you happened would have been discussed at least at my previous visit.  There is a common word in my previous two sentences: think. This is a word you expect doctors to do since they have been through so much school and training, however, its become more of a thing of the past for most people in this day and age. We don’t need to use our God-given brains anymore, we have computers and algorithms and case studies on other people, places, or things to tell us right from wrong. Noone uses intuition anymore. No one trusts anyone anymore, least of all themselves.

Back to the story of my doctor’s visit. I go to a doctors office who has a lot of residents there learning. I have always been okay with it. I have been of the impression that the younger people with less experience often prove to be better doctors because they aren’t poisoned by their past patients and thinking they know for a fact what is wrong with me based on what was wrong with Sabrina 18 years ago when she presented with the same things. Furthermore, they have more to prove. They want to stand out. They’re ignorant to the thought of having to make their recommendations suite their politician’s needs.

So, since I was diagnosed I have been through another doctor’s residency. The last appointment with her was appointment before this last one. I really liked her. I really liked the one before her. After all, she was the one that finally trusted me and eagerly helped me find out what was wrong.  She was my knight in shining armor. My hero. Her predecessor had big shoes to fill and I think she did, until last month.

So, I am waiting to meet my next partner in all things Melissa – the medical version and I think back to hearing the nurses discuss which medication group I would be under just moments ago and wondering what they were talking about. Finally, the doctor who didn’t look a day older than my 16-year-old son comes into the room and begins talking about every single medicine I am on and why.

 

I am thinking, in the back of my mind, why they need all of these tablet computers and physical files for if the doctors aren’t going to use them to keep up with my past encounters and medications so they could avoid having to go through this every single time I am seen. However, I indulge her. I speak on her level as I have learned to do since having to obtain my very own medical license from the University of Freak and Google. After all of this is over she tells me that she can’t write me a refill for my Adderall or my Ambien because “they” – whoever that is – won’t let her. She can’t write a prescription for both a stimulant and a barbiturate (downer) at the same time.  They are both considered addictive and counteract each other.  And so my reply was — I can understand what you are saying, however, Adderall has never acted as a stimulant to me. In fact, it has the complete opposite effect on me along with any other person who has been rightfully diagnosed with ADD or ADHD. Further, what law is this that you are speaking of because I haven’t read or heard about it anywhere, I replied.

 

Her answer was pretty clear as well as vague, “a combination of your insurance and new laws clashing, New Year, New You” she said happily. I’m thinking of a lot of different 4 letter words I would love to reply but I didn’t. Instead, I sat there with tears rolling down my face because of all of the emotions I had suddenly been through right there at that moment. Each tear made me feel more and more like a drug-addicted pill seeker.  I am sitting here back at square one with doctors and how they have decided to help me. Matter of fact, I am before square one and back out in left field on the backside of hell. And she speaks these words which just add fuel to the flame for me. “I can write you for one, but not the other”. She sits there speaking words that indicated that she fully expected me to chose Adderall over Ambien while also suggesting some other medicines I have already tried before finding that Ambien works best for me. I felt like we were playing a medical version of “Go Fish” trading out medicines for other medicines. A “pick your poison of choice” eeny, meany, miny, moe game with pleasure pills (in her mind). I’m so pissed that I not only have to give one up for who knows why, but nobody seems to care at what this may do to their patients nor felt the need to warn me of upcoming changes on one of my last visits.

 

I tell her that I guess I would just start being a well-rested, non-attentive dumbass then because I have already been through the wringer with pain medications. I have already discovered that 99% of the medicines that would actually help with pain won’t be given to me because they don’t want to show up on some government watch list. The other 1 % insurance won’t cover and the monthly cost of it is more than the average person’s car payment. I have come to terms with these things but the ONE thing I know I can do to turn the pain off, even if for only a few hours, is take my Ambien and go to sleep and shut it out for the night.

 

Her reply? Okay, so you want to be taken off of the Adderall? YES! I do. I mean, I don’t but you say I have to so whatever.  Then she tells me that they also can’t write my Ambien for 10mg anymore. She goes on to say that they’ve (I’m still unsure who They is) decided that women should only be prescribed 5mg because their body doesn’t get rid of it as quickly as men’s. Men can still have 10mg.  At this point, think I could have spit fire.

 

I came to find out by speaking with the doctor that was my doctor before this new one, the little girl/doctor in training wasn’t spewing out new laws I hadn’t heard of to me. In fact, she was putting their doctor’s office new year, new rules policy’s off on the government. I really don’t care whose fault it was. I just don’t want to be treated this way and people who are already suffering so much just don’t want their medications messed with unless it is a stronger, better medicine.

A week later my husband had an issue and was written a prescription for Tramadol pain medication. He received a call from WalMart Pharmacy to let him know they couldn’t fill it. They went on to say they could fill it, but they could only give him 7 days worth of them and the prescription was for 10 days. If he filled it, he’d lose 3 days worth of pills. They told him that he could take the prescription somewhere else and have it filled with no problems. This also wasn’t a law but a new rule of Walmart.

All of this brings me to this one common thought. The government and companies like Walmart need to get out of my healthcare. Our lives are being treated like some sort of red light special. Not only that, new doctors are learning to treat patients more like rules and numbers than sick people who trust in them to do what’s best for us. Patients are being forced to attain a Ph.D. on all things self health-related.

I’m sure you’ve all heard of the Netflix series “Making a Murderer”. I predict there will be a new show soon called “Making a Drug Addict”. The new show could feature any number of average persons and the guilty culprit will be a doctor or government agency. Mark my words.