I like to take the time to let folks know how much I appreciate them and today is one of those days. My journey has not been easy, but it becomes much easier when I know I have friends all over the world who cheer me on and support me as I am.
As many people know, from previous entries, when I first started this blog, it was my way to stay connected to the world, voice my opinions (without alienating all my friends and family on Facebook), and it provided me with the mental support I needed so badly.
I was an empty shell of myself and I didn’t know how to find my way back. Sure I put on the face and the mask we all wear. I smiled when needed and held polite conversation with the best of them, but life had finally taken it’s toll on my spirit. I was broken; completely and utterly broken. So much had happened in my life and I had put up with so much crap, I thought eventually my life would even out, and maybe, just maybe, I could have some time to myself where I wasn’t feeling tortured by fate. Just as I thought that time had come for me, fate brought me to my knees once again with pain and an uncertain future.
Just as I was “making it” in life, my body turned on me and my future plans came to a screeching halt. I was diagnosed with some pretty serious stuff.
I have Rheumatoid Arthritis, Fibromyalgia, many other medical conditions, and so many painful injuries, I could be the walking final exam for a ICD 10 coder.
I could teach new nurses on how to start IVs, give shots, and how to take blood pressure in the lower leg or lower arm (Yes. These are appropriate ways to take blood pressure and it hurts less than upper arm.) I know more about my conditions than many medical professionals do. Sometimes that sucks, but sometimes it works to my favor.
I was so healthy for the majority of my life, that this was a huge shock to my mental well-being. It’s like fate decided, “Oh shit. We forgot about her. Let’s catch up for lost time.” Within just a few short years, I went from being perfectly healthy at 39 (I have the full physical to prove it) to disabled at 45. I went from working two very important jobs for the government, to barely being able to tie my shoes. It was hard getting used to this new life, but what choice did I have? I could either crawl in a corner and give up, or keep fighting. Let’s just say the corner looked pretty good for a little while. In fact, escaping to a blanket fort is not outside the realm of possibilities on any given day.
I’ve been dealing with these medical issues for a few years now and I’m almost to a point where my “old life” has finally transitioned to my “new normal.” It’s been interesting to say the least. I’ve learned a lot about myself, others, and how the world really works when you need people the most.
Because I was always active and high spirited, it was hard to accept a life of constant pain, medications, doctor appointments, dealing with insurances, evil people, and a life being controlled by a disease I could not cure. You learn so much when you have to depend on others for help, but mostly learn how weak you can be, and how strong you are also. There are no third options when dealing with disabilities, you either fall and never get back up, or you get up, time and time again, to fight another day. I have fought through some serious stuff in my life, but this last 5 years have been the test of who I really am. I have fought harder than I ever thought I could, with less backing than I’ve ever had. There were many days when I honestly didn’t think my body was going to let me keep going. There were days when it took all I had just to stand up straight and walk 5 more steps. Hell, I still fight everyday to keep going and I worry everyday I won’t be strong enough to face what comes next, but I do face it, and just like I have always fought bad thing in life, I continue fighting this.
When I first received my diagnosis, I already knew something was wrong, but I wasn’t sure what it was. I felt as though my life force was draining out of me and pretty soon I would disappear in an explosion of pain, but my mind was still strong and I was going to fight whatever had come my way. Or so I thought.
I faced the diagnosis with the same gusto as I do any problem in life. The very first thing I did was read as much as I could about my diseases and injuries, then I wrote down everything I could find and made a plan. My plan was foolproof. Diet, exercise, vitamins, medications, and so much more. My entire life had always been one long “to do list” and I knew I could tackle this too! Boy, was I wrong.
There are many aspects of my physical well being I can control, but there are many I can’t control too. For instance, I never knew medications would have such a huge impact on my life. I get about 2 hours of “normal me” per day. That is in an entire 24 hour period. I’m either sick, tired, hungry, not hungry, wide awake, shaky, I have a rebound headache, I’m dehydrated, I’m sweating, I feel ill, I’m too hot or too cold, or I have a combination of all of them.
These are all due to combinations of necessary medications.
I’ve had people ask me, “If the medications make you feel so bad, why take them?” I guess I don’t have to take them. I could suffer in bed all the time and die a very early agonizing death. Instead I’ve chosen to live longer, but experience only half the life I did before. Honestly, I think that’s a pretty good trade off. There are people who are way sicker than I am and who have suffered longer, yet they’re still kicking ass in the world, so I guess I can too. No need to give up now. Not when life is getting so high tech and so much fun (Pokemon Go anyone?).
Another way my life has changed is mostly due to fatigue. I’m not talked about being tired after work and sleeping until you feel better. I’m talking about dragging your body from one place to another like dead weight. I’m talking about feeling like you have the flu, every single day of your life.
I’m talking about taking a shower and needing a nap. I’m talking about going hungry or thirsty because the distance from the living room to the kitchen is just too far away for the energy you have left for the day. I’m talking about sleeping for 10 hours and your battery only filling up a quarter of what normal would be. That is fatigue and I have it in spades. Of the many issues we have, many autoimmune patients complain of fatigue (mental and physical) as being the number one reason for not enjoying life. Consider this, when severe pain is as high as we experience, but fatigue is one of the main reasons for complaints, then you must understand the level of exhaustion patients are experiencing. This is why many patients really enjoy floating in water. Just taking the weight off of their body and not having to carry around their bodies, even for a short time feels so good.
These and many other issues were greater than I could ever comprehend. It took me a very long time to mentally accept I could not control everything about my body and I would have to accept the bad days along with the few good days. I would have to adjust my life to my body, not my body to my life.
It wasn’t easy. Trust me, there were tears, cries to every god who would listen, and there were time of solitude, when I just wanted to shut the world out and allow myself to feel this pain alone. I needed time to stop fighting the pain and accept it as part of myself.
I felt as if an alien had taken over my body and I was being forced to share my body and my brain with the new entity. Once joined, there was no way to separate the two, without killing me, the host.
(There are some Stargate similarities in here, but I don’t want to bore those who are not familiar with the show.)
I think the hardest part of all was seeing the face of Doctors and other medical personnel when treating me for my conditions. To them, they see me as another patient, and having this alien thing in my body, using my body as it’s host, was nothing new to them. I had become only one of a few million who carried this disease or one of many more millions who suffered from one of all the autoimmune diseases. To them I was just another patient, but to me, I was shocked no one was more surprised I was invaded by a disease I did not want and did not ask for. Once it’s part of you, that’s it. Your body and brain are split between the real you and this entity which is trying to control all aspects of who you are. This new “thing” demands to be heard and demands attention. There is no ignoring the demands on my mind and my body. It’s a war that cannot be won. The host will eventually lose. The only thing a patient can do is slow the progression of the hostile takeover by staying engaged in life and fighting to find a new normal. It’s hard, but it can be done.
I wanted to find my new normal, but I had no idea where to look. I spent my entire life as my children’s mom, a Soldier, and a government employee. I had owned businesses before, but I was always very healthy during those times, and I could work 50 -60 hours a week to make sure our lives stayed on track. This time it was different. I was divorced, my children were grown, and now my career was gone. I was lost and I had to find my way back.
I truly believe every human has the responsibility to give something back to this world (to the best of their abilities) and I knew I wasn’t doing that just sitting around feeling sorry for myself. At the time of my diagnosis, I felt like I had lost everything I knew about myself. I lost my career, the energy for life, many of my old friends, and all the plans I had for my future were now gone. I basically had to start from scratch, learning who I was, and planning for this new future, in this broken body. I didn’t like feeling like a problem. Even if it was in some small way, I wanted to help and become part of the solution.
I needed to do something to give me hope so I wasn’t always focused on my medical problems. I had gotten this far and handled the maze of medical care, maybe others needed to know how too.
I wanted to share my own struggles and maybe give a little hope to others. I wanted to stay engaged in life, keep my spirits up, and stay involved in politics and activism (especially medical activism for Veterans). By voicing my concerns, and allowing others to do the same, I felt like I could do something for the world, but I didn’t know how.
With everything going on in my life and dealing with my healthy, the only way I could be heard was to start my own blog. So, that’s exactly what I did.
Writing about human equality and giving a place for others to voice their concerns was the only thing I could think of at the time to continue giving back to the world (I’ve also picked up painting and my life passion of photography again) and I’m so glad I did. I’ve met some really wonderful people along the way and this has given me a place to get all the insane conversations I have in my head down on paper.
If you haven’t noticed, I also love memes. I collect as many as I can. Memes are just the awesome little pick-me-ups I need during the day. If you have any you wish to share, feel free to put them in the comments. I will gladly save them in my meme folder and use them in future updates. I particularly like sarcastic, funny, and positive memes. If all three of those criteria are in one meme, that is meme gold!
I love that I have people in this world who spread love and compassion to everyone around them.
When the world news is so sad and so soul crushing, that you can’t even breath, there are many people out in this world with smiles on their face, kindness in their soul, and compassion in their heart. These are the people who make life worth living. These are the people who remind me everything will be okay.
Through this blog and my social media accounts, I’ve met some of the nicest people you could ever imagine. There are so many great people in this world and they are doing some wonderful things to make the world a better place to live.
With all of this said, I want to send my deepest appreciation to everyone who reads my blog, shares my blog, sends me positive comments, shares their blog with me, and a huge thank you to the people who so graciously allow me to interview them and highlight their hard work on my blog. I know my blog is in the very early stages of growth, but it means the world to me that so many people have joined me and supported me so far.
You make my life so full of light and happiness. I can’t wait to see what we all accomplish in another year. I think it’s going to be pretty amazing!
Until next time…be safe, be kind, and always be happy.