It was a Spoonie October
I spent most of October feeling awful. My meds have been doubled and tripled making my body feel crappy from my feet to my head.
However I was able to go on a few HOG rides, the Apple Hill ride and the Monthly HOG dinner ride. I also decided to take over the LOH Officer position(after much force from others HA!) in our local HOG chapter. I hope that I will be able to have some Fun with this new challenge this coming year.
I also was able to cook dinner for our local veteran’s house which I really enjoyed and have decided to make a monthly thing. It is the least I can do for the people who have put their lives on the front line for mine. Please reach out to your local Veteran’s house and see what YOU can do!
My BFF Rhonda flew in for a couple days which really put a huge smile on my face. She always reminds me of how much I still have to live for. While she was here, I skipped my regular meds, so that I could be awake and spend some quality time with her. I am so blessed that i was able to go out and take some beautiful pictures. We also were able to catch up, it was a nice visit. I absolutely LOVE that i have such an amazing REAL friend like her. Guess how long we have known each other?! Here is an old photo of us….
We still look Good!!!!!!!!!!!!!!!!!!!!!!! I love you so much Rhonda! True friends that stick around through it ALL….are no longer friends BUT FAMILY! After she goes back home, i always find these notes….EVERYWHERE! She reminds me that I am never ALONE!!! I hope you all have a Rhonda in your life!
We also did pumpkins..I mean who doesn’t???
October was also filled with crap Dr appts where I had to roll the dice…… The dice is the Drug testing system, many Dr offices is going to. I just laugh, cause I only use my meds….no one else’s…..so the dice GOT NOTHING ON ME! BOOM! However doing double chemo meds and biologic’s really suck! Mean swollen belly days….. By the way this is what Gastroparesis looks like when it flares… *yes it fucking hurts*
Lucky for you ALL, I survived October and so far have been able to do a few things this November….
I drove to San Francisco and spent some time with my cousins and then went to another AWESOME Tyrone Wells concert. It is always a great day when i am able to see Tyrone! He inspires me to continue on this path…even when all i want to do is jump off it. He even made me cry by dedicating the song, “more” to me. I am truly blessed! Thanks Tyrone for all you do, you truly are a part of my family! What a friendship we have! Keeping entertained between acts, at this point i was in so much pain that i could not breathe, so instead of cry, i made funny faces….it takes the same energy….i mind as well use my energy(spoons) in a good way!If you ever get a chance to see Tyrone, do IT!!!! He will change your life!
I also have been able to work a few days here and there….it has been so nice to get out of bed a little!
We also were able to have Thanksgiving dinner with some very special people, who I am blessed to call family…because the word Friend does NOT express what they mean to ME. I even made some yummy potatoes and some delicious pies! Just being able to cook/bake a little this Holiday season make me sooooo Happy! Fuck you body…..I am the boss!
I was so busy having such a great time at the Thanksgiving Dinner that i took zero pics however Jim took one, so i will just show the picture he took. In this photo we are modeling the wreath I made him and his kids for Christmas! Fuck you Grinch! Ha!!!!!!!!!!!
Jim’s Mom Jeannie is someone I call Mom, so we were super grateful to be a part of her family this Holiday season! God has brought so many great people into my life and i am so grateful. I hope you all remember to be grateful and positive even when you feel like you can not go on. This year has been extremely tough, so much that I have not blogged as much as last year but this is what happens when your body is killing you slowly…..you have less and less energy……you really learn to live second by second. This quote below really says it ALL……the sicker I get the more i remember moments and not days….If I were to just think about days, i would be depressed because ALL my days are filled with severe pain….
Truth is it takes A lot for me to smile some days, be kind, get up and do things. I feel like a burden to others, I sometimes pray for God to hurry up and take me. Being in pain is so awful, I can’t even begin to explain a way for others to understand who feel no pain/regular pain(headache etc).And then when i get a small break from pain(meaning on a pain scale it is about a 5)my body is so tired from fighting from within that I just sleep. I can’t seem to win. I often look around and watch as life passes me by. I feel like I am living someone else’s life and wish someone could just pick me up and run away with me. (like this would cure me) NOT! I want so desperately to live a different life where pain does NOT exist…..and have normal problems…….you know things healthy people take for granted…..I want to live in a world where people love ME unconditionally, and not take anything for granted. If you are reading this and have no health issues…take a moment and thank God for being healthy….thank your legs for not hurting when you walk or run, thank your hands for working, thank your body for running a normal temp and not being super hot or super cold, thank your nerves for not screaming in pain 24/7, thank your belly for allowing any kind of food in it, I THINK YOU GET THE POINT. Just give thanks for what you have!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I thank God every morning for a warm shower that takes my mind off my pain for 20 minutes, for mouth rinse that comforts my bone in my jaw line that is breaking, for clothes that hid every surgery scar, for a job where people work with my health, a few close friends/family I trust, for loving adopted pets who comfort me when i am screaming in pain………MOST IMPORTANTLY
whether I am feeling like this….
OR like this…Just know that I am fighting everyday for another day, …….We all are….Hang in there fellow spoonies and above all NEVER GIVE UP……God has a purpose for us all!
So I have a HUGE 5 hour 21st surgery coming up, I am super terrified….sometimes I wonder when God will call my name….How much more do I have to go through?! Anyways once i get the date set, I will keep you all posted. In the meantime please pray for me to be ready for this surgery. I keep postponing it. 🙁 For some reason i am terrified more than usual, I think it is because my 19th surgery was supposed to be routine however I woke up to a cut vagus nerve….which caused the gastroparesis….sigh……Truth is I am just really scared….my body is done…I mean surgery 21????? How much can my already weak body take? I am still doing a double dose of chemo meds every week and biologic’s. PUKE PUKE PUKE PUKE! Also i am looking into seeing a specialist in California because I do not like my care here In Nevada…and I know our care is up to us. So that is the health scoop……keep praying…keep fighting…..keep spreading knowledge about chronic/invisible diseases. Most of all….KNOW that OUR disease DOES NOT define who we are…Lots of love.