There is Always Hope

I have no idea how your week has been but mine has been crazy to say the least.

I have so much to say…so lets get started,

Last Friday, I woke up to my knees feeling like shit, usually they ache but do not cause me pain like I was feeling. I called the Dr however she was unable to see me till the following week.

Saturday I woke up nice and early because I had made previous plans to go on the Unionville Ride. I am glad I went but it took all i had and then some.

Once We got home, I went straight to sleep. Between the heat and the pain, i could take no more.

Sunday i went to work and quickly found a way to make the day go by fast….(with Alisha’s help)

After work I made enchiladas for my coworkers that were working on Monday..

I love to cook when my body allows me too!

Monday I went to work….YA 2 days in a row! #shieldmaiden 😉

By monday night my entire leg was killing me and all the blood vessels around my knee had blown..

I tried everything to make me comfortable but nothing was working, not even my K-tape.

It is nights like this i just want to run away….I know running away doesn’t do anything because my body comes along but i think you get what I mean. I feel so helpless. Nothing I do ever seems to be enough for my body.

Tuesday i woke up with more pain than i had the night before and i could barely walk. I laid all day in my recliner and cried, it was all l could do.  

I thought Tuesday was bad until Wednesday rolled around….my eyes were blurry most of the day and i kept ZERO food down. …

Now we are at TODAY….lets just say I should have stayed home. I got up feeling not so great but knew I had to eat. So i drove down to Einsteins for my Birthday bagel and Berry Lemonade. On my way home, i was pulled over for speeding….HA! I knew had an extra $200 in my pocket to burn….NOT………

After the fun filled 30min with the Police Officer, i headed off to the Dr. I sat in the waiting room for about 20min panicking about what I would soon learn. I knew today would be a day I would soon not forget, it always is when we go over blood work and other testing.  As the Dr was going over everything, I found myself disappearing into the background. At some point I just stopped listening because I could literately hear no more.  I just wanted to hit the escape button, i wanted to Stop playing whatever game this was. I kept thinking this IS NOT MY LIFE.  You have the wrong tests, I am sick enough, I do not need anything new. I really don’t.

I nodded to all her questions and then politely excused myself as I felt so overwhelmed especially when she said, “I can send you to Stanford, but they will not do much for you because there are not many meds that show any real improvement with this disease.”

I know this might sound funny but i go to the Dr for HELP but rarely do I get any real HELP. I understand they are human too and can only do what they can but I just thought since i can’t HELP myself that maybe someone who went to school to HELP others can HELP me….JUST ONCE….But instead I leave with a stack of Poison meds…I just don’t understand, i really don’t……I feel so lost and so helpless…There really is no  light at the end of the tunnel……….THIS IS HOW I FEEL IN THE MOMENT.

I am sure you are sitting there judging me but unless you are in MY shoes, please try not too.

Most of you know I try to be Positive as much as I can but with the month I have had and the 2 new diagnosis’s I truly feel lost.  Even with that said, i will never give up, i will forever fight up until my last breathe. I am not a sit in the corner and watch my life pass me by person, however I AM ALLOWED to fall apart occasionally, anyone going through this would.

Tomorrow IS my birthday which I like to CELEBRATE because in 2001 my Dr said i would not live past 7 years..So EVERY birthday means a whole lot to me. EveryDAY means a lot to me, EVERY SECOND means a lot to me. This is the very reason why I write and share how I am feeling so that it does not fester and waste anymore unnecessary time that I may or may not have. And I pray it helps others who are going through the exact/similar shit.  Just in the last month 2 people that were in one of the support groups i attend committed suicide. Suicide is not uncommon among the chronic pain/chronic illness community.  Every time  i hear that another one of us has taken their life, it breaks my heart and I am quickly reminded how i have to stay ahead of the beast, that could so easily take control.

Hugs and Prayers to all of us who are going through something tonight, it does’t have to be health shit, it can be anything…..we ALL go through things…..Life is NOT perfect for any of us…..But together WE CAN MAKE A DIFFERENCE….Thanks for all your support <3

 

 

 

 

Big Things On The Horizon

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…

 HA!!!!!

 

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…

  1. I am looking for some better Dr’s and I do not care where they are located. So please be on the look out.
  2. 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.
  3. 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

 

 

Roses

If you truly know me, you know i do not like Roses. I think they are ugly  expensive flowers that die in a blink of an eye. But today I find Roses as a perfect title to explain how i feel in this moment.

I despise almost everything at this very moment. I feel ugly and i am filled with so much despair.  I feel like a bubble has swolled me whole and i can’t find the needle to pop it so i can breathe. I so desperately want out! 

The bubble represents everyone/everything in my life. I live mostly the way others want me to live.  The Dr’s tell me what to eat, what meds to take , what i can and cant do. In other areas of my life people set goals for me then do everything in their power to make sure i fail. They stand in my way or give my goals to others, others who are NOT sick. In personal relationships this includes friends and family…i do what makes them happy as much as I can even if it makes life harder for me.  I feel like what I want rarely  matters. I feel like I am not worth anyone taking risks with me, like they “settle” because they know eventually i will be dead. 

I Am not writing all this to get sympathy, or make anyone feel sorry for me, i am writing this to get it OUT of my body & out of my mind.  I have enough poison in it. If you know me or follow my posts, you know i try my best to be positive but everyone has a breaking point. I am having one of those now. I have hit a wall. With all this new medical bullshit going on with me and no real answers i AM fucking scared and frustrated. And I am truly alone in it. I am the ONE going through it. 


This Daudet quote is DEAD on! I could not say it any better! 

I know many of you mean well by saying things like, this to shall pass, it will get better, i am thinking about you etc But the truth  is you are just saying these things because you have no idea what to say so you choose these words in hopes it will comfort me in some way. (I also know there is a time and place for these sayings such as you have or are in a similiar situation and you are sincere in saying what you say, then by all means say it)No offense to anyone but i would rather hear… i will be here if you need me AND then REALLY be there!!!   Because if i had as much help as people offer me I wouldn’t feel so emotionally alone. I know everyone has a life to live but I am here to tell you to think before you speak. If you really want to help great  if not zip it. 


For those of you who are on the “fence” with me meaning you like me in your life but don’t see a future with me…this can be personal or professional….figure your shit out before i make the decision for YOU! I am done with what you say then do the opposite! My time IS fucking valuable….as is yours! 


Being around me or with me for pitty or you feel sorry for me is bullshit & I deserve much  more. Do not think for one minute that there are no other people in the world that would take my sick ass on. Outside of my health i have a lot to offer. I am a good person and i love my friends and family with everything i have… i give 100 if you give 100. Try asking what I want in life and LISTEN. I want everyone to be happy. It is called compromise, try it sometime. 

For  the people sending me messages about how beautiful i am and how my health will get better… FUCK you.. are you serious? What the fuck  does my looks have anything to do with someone finding a cure for my disease? If i understand you correctly… i should be healthy because of my looks? (Yes i am a total babe puking and shitting my guts out..picture below is for you, this is sick me, i am not just the renogunsgirl you like to drool over) Like only ugly people should get sick??? Sounds like you got your diploma out of a cracker jack box….



To sum this week up… i am extremely frustrated with the way everyone is dealing with my health… i would love it if Dr’s took compassion classes and really took time to help instead of just passing me on to the next Dr who will also treat me like a number. (Side note, pleas do not try and school me on how Dr’s really do care and how i dont see their side blah blah blah.. i have been doing this shit for a long time, i dont judge blindly and when i do come across an amazing Dr i give them credit) I want friends/family/professional to be more compassionate. Really mean what you say or just be quiet. Like i said get off the fence. Tell it like it is I can take it. I would rather be hurt with the truth than be continuously drug through the coals. Do not for one second think I don’t know what you say or do just because I am not always around. I have eyes and ears everywhere. People talk, it is what we do. 

I know i can talk and write till i am BLUE in the face and some people will still  never understand but i hope and pray that we can all come to some understanding. Please take what i say  to heart, it is not meant to be rude it is just the truth as I SEE it. Battling several non curable diseases and listening to the Dr’s explain how one is progressing and attacking my organs is so tough for me to hear. And to add to that now i am being poisoned by either one of my poison meds or something else my body is destroying. I just want to crawl out of my own body and run far away where my body will never find me. I ask God all the time why i am still here. I sometimes can’t see past my health, the pain and frustration of wasting days in the bathroom or in bed really affects the way i think. I want to live but my body wants to die. So every minute it is a struggle. And no matter what my struggles are,  life still goes on, i have to work when i can to pay my bills, i have to take care of my fur kids etc. Life doesn’t stop because I am sick. I get zero breaks. Don’t be upset with me or do waste time being mad at how i feel.. it is your life but truth is…I pray God eventually hands me the needle…..this isn’t beautiful anymore….