I Do not know about all of YOU, but I am done with all this damn cold weather! It is about time we have some real SUNSHINE!!
I have so much to say so please be patient……..
Before I even begin to fill you all in on what is new….I would like to take a moment to talk about 2 things….
No matter what is going on in the country, we can’t get too caught up in what the MEDIA says or doesn’t say. We must always remember those who have and are fighting for our country. .
Because of those who sacrifice for us, we live in a FREE country…Lets keep it that way. Also Guns DO NOT KILL people, People kill people. A gun is a tool, so STOP blaming the Gun.
P.S. I will not argue this opinion because it IS a fact! Just like Rules/Laws ONLY work on LAW ABIDING citizens…..
Secondly, I want to shout out to Sabrina…you know who you are girl. 😉 It is SO important to be able to share with others who are fighting the same battle. Thanks for reaching out. Super excited to watch how our journey plays out.
If you are reading my posts and are feeling alone, please do reach out. I am here to chat with or just lend an ear. Please know that you are NOT alone.
To my spoonie family…..i thought we all needed a giggle tonight…
OK, now let’s get you all caught up on what my ass has been doing or not doing since last weeks post.
June 8th (Thursday) I started the day off by going AGAIN to the Dr because the Metal taste/smell was still in full force. I also talked to my New friend Sabrina.
Friday was just a regular shit day not mentioning. Ha!
Saturday I crawled out of bed and went on a Hog chapter ride to Graeagle Ca. I was still not feeling well but I knew it was important to get OUT of the house!
Sunday it was back to work….as you can see….
Alisha and I were feeling a little FOXY..
and Micah and I were trying to figure out who actually was working 🙂
Monday was another Fun Filled work day…
Fun was had by all, we even watched the Alien movies..
But then it all ended with Shit meds…
I spent the rest of the night in the bathroom and in bed. I absolutely hate these days. (enter sad face here)
Tuesday and Wednesday were a complete blur. I spent 80% of my time in the bathroom. My pain was at an all time high and NOTHING was helping not even my pain pump. ugg
Which brings me to TODAY………………………………………………………………………………………………….
As of next week Monday June 19th, I will be STOPPING ALL POISON MEDS. Now before you get all CRAZY on my ass, THIS IS MY LIFE. I know some of you will be understanding maybe even happy while others will say I am committing suicide…blah blah blah….. Here is why I AM DOING WHAT I WANT TO DO……
First off well its MY life NOT yours. It may not be what you would choose, but again my life. Just in case you haven’t been following along these last few years…I have been doing chemo meds for 5 years EVERY FUCKING WEEK..lets add that up…that is 260 times I have had to put that shit in my body. I have been mixing it with my Biologic for 1 year. I AM DONE.
Secondly, My damn disease does ENOUGH to me without all the poisons they add to it. Do you know what my disease does to me BY ITSELF?! Lets take a look…..
Fatigue(this is different that being tired, read about it), discomfort all over the body, insomnia, hair loss, dry skin, being cold(raynauds), bruise easily, Rash’s, skin sensitivity, severe pain, swollen joints, dry painful eyes, swollen glands, excessive thirst, joint pain, morning stiffness(and not the fun kind), muscle weakness, muscle cramps and twitching, weight changes, abdominal pain, distended stomach, seizures around liver, anxiety and so much MORE….
If you really want to know more..Read all about Multiple Organ Ra, Nash, Gastroparesis,Raynauds and Ulcerative Colitis. These are ALL autoimmune diseases and are very miserable. There is NO CURE and more often than not Dr’s just hand out the “normal” meds they hope will help slow the progression of the diseases. These are all for the most part these meds fall into these categories: Immunosuppressant Drugs, which do just what you think they do, they slow and in some case STOP your IMMUNE system, Anti-inflammatory(self-explanatory,) and Disease Modifying meds(TNF blockers and Chemo drugs like Methotrexate.)
Thirdly Louise told me before she died, “One day you will choose quantity or quality of life.” She was also the same person that said, “do not be sad we are sick because one day we will be somewhere there is no pain or suffering.”-Thanks Louise
I am to the point that I choose quality over quantity. Life is so short as it is. I want to enjoy every moment my body allows me. Some Mondays are really good until i take my meds and then I am down for days. I just do not want to do it anymore.
For those of you wondering what will happen when I stop treatment(if that is what you want to call it) here is what some say…
Healthy days article(2013)
“Rheumatoid arthritis “is a progressive disease, which, if left untreated, can significantly and permanently reduce joint function, patient mobility and quality of life,” study lead author Dr. Vibeke Strand, a clinical professor at Stanford University School of Medicine.”
Everyday Health (2017)
“If you’re not following your prescribed treatment plan, it can lead to flares that can cause joint damage to accumulate, Dr. Worthing says. “And once the damage is done, it is not likely to be repaired.”
Health Line article written by Ashley Boynes-Shuck on November 20, 2015
“According to a study of nurses’ health by Brigham and Women’s Hospital (BWH), patients with RA have a significantly elevated risk of death, typically from disease complications related to cardiovascular or respiratory problems.”
Some of my Doctors believe this is completely dumb to stop meds because my RA and Ulcerative Colitis work well together destroying my body, left untreated, my legs will get worse and I will end up in a wheel chair sooner, my joints, organs will struggle and eventually i will die due to some complication of the diseases.
With this ALL said let me just say this, I am Not doing this on a whim. I have been on these damn meds for 5 freaking years, 5!! In that time i have watched my cell death RISE regardless of what meds i was taking. Why on God’s Green earth would I continue to take something that is not doing much for me?!
On the other side(playing Devils advocate) what if these meds were slowing some progression of the disease that could not have been measured? Are you ready for what your disease might do in full effect? Meaning with nothing to STOP it?
In answer to that…..I am, I am as Ready as I was to take that first dose of chemo meds 5 years ago. Nothing in life is for sure. But what I do know is my life ON all these crap meds and they have got to GO. This is MY life. Worse comes to worse, I can go back on them….but for now they are GONE..BUH BYE
So here is MY plan!
Last week, I bought this amazing book.
I am going to be making a lot changes as far as diet, how i deal with stress etc. Everything affects our health!
I will still see a rheumatologist and an internist. I will still watch my cell death. I will still be scared.I will still be battling my disease BUT on my terms. I will still have my down days but they will be ONLY because of MY HEALTH, MY DISEASES not the crap meds!!!
I have no idea if any of this will help but at least while trying it, it will not hurt me. In the end I want to be able to say, i lived how I wanted. Just know that I am not the only one battling autoimmune diseases and stopping all man-made meds. Many people are trying new things. ***disclaimer*** this does not mean that i want to hear all about your oils, creams, reading material etc that you have tried. I do not mind you sharing but pushing me to do what YOU want is not welcome. I have already wasted 5 years doing what someone else wanted me to do. I have no idea what my future will bring BUT i do know it will be on MY terms. If I die sooner because i chose to live the way I wanted to then YA ME.
It doesn’t matter if we take all these poisons or try to take a more “healthy” route, we still have anxiety about our diseases. All those things I mentioned above will not JUST GO AWAY but i am praying that I find a better way to deal with them WITHOUT the poison meds. And like I said, I can always go back to the poison meds, it is not like they are going to go anywhere.
I will continue to Push myself to do what I can when I can. I will continue to NOT let my diseases DEFINE who I am. A friend of mine recently reminded me to get out and travel more, he is so right, so I am planning on traveling more, i just have to work out the details. I plan on traveling where I know people so I do not waste money on hotels or time trying to figure out what to see, etc So if you want to see my ass, hit me up….
Finally, I pray that my choices do not hurt me more than the meds have been doing. I pray that my diseases do not progress so much that I can no longer do anything. If I am honest with myself, i know that my cell death will continue to rise and that my organs that are already affected will continue to get sicker and the ones that are not yet affected will be. I will not lie and say that I am not afraid. But I know a lot more now that I did when i was diagnosed and I know that I am truly not alone….
Again this is MY life. My Truth.
Now that I have just Blown your mind…..let me fill you in on some other stuff…
- I am looking for some better Dr’s and I do not care where they are located. So please be on the look out.
- I am currently working on a project but do not want to say too much about it yet. Just know i am super excited to be able to work with some great people and be able to hopefully continue to help/inspire others and maybe make some money.
- The Conway household as a whole is going through some changes and have some exciting news(exciting to us anyways) to share real soon……Stay tuned