Disposable Spoons

I really hope everyone understood the video.  Not only does changing plans over and over on me make it hard but when I take initiative and say I WANT to do something and I get turned away, it hurts me. It hurts me because I have prayed about it and I have figured out in my head how I can save enough energy to do whatever it is that I wanted to do.

There are many HOG Rides that I could go on but can’t due to my health so this is what we do, we sit down and figure out what ones I can go on and then I have to plan it out at least a week in advance. So for those of you who I think I just get up and go on all these rides are so so wrong!  It takes a lot of planning to do anything. I even carry around a calendar binder that keeps track of my pain, energy levels and what I plan on doing that week.  Let’s just say most things do NOT get done!

Another Example, imagine how house chores and meals get done. I love to cook and now I barely cook 2 meals a week. Making tacos takes almost 20 spoons (I counted one day).  Vacuuming kicks my butt BIG TIME, but I have animals that shed, so vacuuming has to get done. I am not a witch that can wiggle her nose and magically her house is clean 😉 I also love to garden because I love to watch things grow but I have to plan for that too.  I try to walk the Marina every day and some days I make it and some days I do not.  But I make it a goal nonetheless. As of TODAY I am planning my trip to San Francisco to see Tyrone Wells in September.  Things like this are hard because if I buy tickets and then on the day of, I have zero spoons to go….money is wasted.  We also have a vacation planned in September that we are both nervous about because my health changes daily. We have to plan on extra days just so I can sleep the day away if need be. So as you can see everything and everyone is affected. I have lost friends/relationships because I can’t just go and visit them anymore or I can’t “hang out” enough or give them what they need.  Over the years it has been mostly me doing everything and now that I can’t people just turn their backs.  So for those of you who are still standing with me..THANK YOU. I used to be angry about stuff like that but that was a HUGE waste of spoons, besides God has added many great people in my life these last 2 years.  😉

Every little thing and Big thing I DO is a spoon, sometimes many spoons. Please do not take what I do for granted big or small. Recently I made something for someone and then watched it be thrown away. I have forgiven and moved on but I will not lie, that hurt me deeply. I may not be an artist but I can promise you that I made that for you with pure love.  Sometimes I struggle with what I should be doing with my spoons and how I waste many spoons on people who don’t deserve a broken spoon. But I am working on that issue. The sicker I get, the more I see with my eyes and less with my heart. My spoons are valuable!!!

Another thing that sucks is when the chemo meds make me so sick that I am vomiting and other “things” but because I have ZERO spoons I just lay there and ruin beds, clothes, blankets etc. It is completely humiliating sometimes. I am embarrassed just talking about it but I want to people to know just how hard IT IS! It is NO cake walk.

Just because you only see me at church when I am dressed nice, wearing makeup and smiling does not mean I feel great or that I am not struggling right that second. Just because you see me at the store getting groceries does not mean life is getting any better. Just because I am dancing in the rain or singing in my car does not mean I am feeling terrific. Just because you hear about my Harley Rides every other week or so does not mean I am cured….it just means I am trying to live life and more times than not, it’s on borrowed spoons. So if you see me out and about just say Hi and if you can throw a spoon or two my way.

Remember you never know someone else’s struggles, not all struggles are seen on the outside!  I can guarantee every person you walk by is going through something. Love on another and take NO ONE for granted.

“A new command I give you: Love one another. As I have loved you, so you must love one another.” John 13:34

 

 

 

Living second to second

*****ignore the grammar, this voice program stinks……it must have gone to a school in Nevada*****hahahahaha

This week i was surprised what i got done…especially after i told myself…live second to second……

July 18th Today we got in a short motorcycle ride and aldo bought a few new ridung shirts. Its nice to get new things sometimes:-)
Sat 19th we enjoyed an amazing HOG chapter ride to Georgetown CA. This by far was one of my favorite rides because of how beautiful the ride was. I could not take enough pictures! If you have never been, i highly recommend it! 🙂 If you have ever been to Virginia City Nv, this small town has a similar feel. Thanks Lisa for a great ride and Christine for leading our team:-)


****for some reason pictures for this ride are not loading so i will try again later tonight….

Monday

I actually had a little bit of energy today I went to Donner Lake and enjoyed God’s beautiful beautiful scenery! Places like this remind me of all the beauty God has given us! Donner Lake is very special to me so it was great to be back up there.Had a really good talk with my friend Christine Who really pulled me out of a sad issue i was dealing with! Friends are so important, and ones that stick it through even the hardest times ROCK!! I  also walked Khali at the marina 2 miles!!

  

Tuesday

Today I had a very severe leg cramps ones where you just want to chop off your legs and throwing in the garbage disposal and that’s being nice!!! But still managed to make it to the marina and walk my 2 miles. At 6 PM I did my chemo meds and then went to bed early due to my pain.

Wednesday

Today was my doctor appointment with my new specialist who I want to say I like but I’m a little hesitant. She’s been terrific the two times I’ve seen her but I’m still nervous as whoever I pick is going to be in charge of my health so I feel like I need to be kind of picky. But so far she’s been amazing she also told me how she believes I have my version of RA and what she wants to start doing about it. And with her evidence, a little of my blood tests and some of  my scans ,I can definitely see where she’s getting her thoughts from. So I have decided to go along with her treatment plan which means I will  not only do my chemo meds but I will also inject into my legs every week a biologic. For those of you that don’t know what a biologic is it is similar to a chemo drug it does exactly the same thing essentially it shuts down your immune system and fights the disease that way so if you are sick please stay far far far away for me!! I was also told that because we are mixing with the chemo and a biologic drug & my predisposed family genes that I will be more receptive to cancer and other catastrophic things so we have to do my blood every six weeks to try to keep an eyeball on that so it’s kind of scary and I’m a little nervous but I’m going to give it six months. It’s in six months I see no changes as far as my disease then I am just going to have to stop this fight as far as from the doctors point of view and all these poisons that I’m putting in my body. It’s getting to the point where I’m tired of being a guinea pig and my quality of life isn’t great and when you and I always yucky meds into the mix it’s worse. And this is all like really emotional to me so that’s all I like to say at this time about this situation.

Thursday

Today really hit me how emotional I am about starting more poison drugs and how much I don’t want to do it but  I don’t want people to think that I’m a quitter because I’m not! But at the same time I just want to touch someone and show them how i feel everyday, why I don’t want to do this anymore. If any of you could feel my pain, you’d run!!

It’s been a hard week, so  A friend of mine Christine invited me over for a coloring therapy session tonight and that’s what I did we colored for two hours and I had a lot of fun and I realize that I really need to do this more often it was very helpful! Thanks Christine for having me over next time we’re going to have some dinner too!! FYI…We are the best color artists ever…if someone wants to join us…please let us know!!!!

Friday

A lot happened today I will just say that I had a really bad experience with Honda Reno and I’m going to leave it at that, because they promised to fix the situation by next Friday so if by next Friday they haven’t fixed the situation then I will be sure to put it in my blog what happened.

I also have been working on the front and backyard as you can see below with the before and after pictures. The teens in my church helped pull weeds and move rocks for me last month so that this month I was able to plant some grass and it’s finally starting to grow as you can see from the pictures yes I have a green thumb and yes I am that awesome! I also was able to do a tribute to Brian’s mother and to my grandfather two great people that were gone to soon:-)



Saturday I did the marina walk which was another 2 miles and this time Brian came along to help with the dog and we had a great time then we went home and watch some TV as I was not feeling very good.
***Side notes I have decided that I’m going to start paddle boarding I think it’s going to help get my mind off of things and it’s gonna be great exercise! I have contacted someone who I am hoping is going to help me do this as she also has one of the same diseases that i have and she is doing it!!  So keep your eye out for affordable boards.

I also want to take a moment and tell the younger generation how important it is to love yourself before others. Too often i see young adults changing their facebook status like i change my underwear.  Listen i make mistakes;we all do and thats why i am speaking out about this. I want you to learn what no one took the time to teach me!!  You can do it on your own!!! You don’t need some other  young person to help you make it in this world. There is plenty of time to have a partner. And to all the parents i see leaving comments like im so happy for you EVERY time there is a new relationship status on your child’s status,you are part of the problem.  Teach OUR future to be strong and independent!  Love is not just a word that should be used freely….


This weeks challenge is to pick up your bible, pick a page and read! I love doing this 🙂

This weeks Bible Verse

Ecclesiastes 12

“A life with out God can produce a bitter, lonely and hopeless old age. A Life centered around God is fulfilling; it makes the evil days, when disabilities, sickness and handicaps cause barriers to enjoy life!”

I hope that everyone had a great week and I would just like to say that I’m very grateful for those of you that read my blog and have recommended my blog to other people.  I’m very grateful and I hope that I can continue to help others! I think it’s important just to make it second the second a lot of people say just make it to tomorrow well people that have chronic and her terminal diseases tomorrow seems so far away so I always say make it second to second because sometimes that’s all we got.

 

These last few crazy weeks

This post is going to be a little long because it will be covering two weeks, so hang in there with me..Lets start on July 5th this was the day I attended my morning church service, then came home and started the bedroom project (painting). 

 We are almost done with remodeling and i am super excited & proud of the work we have done!!

July 6th I woke up and took Khali on a 2mile Marina Walk

I Also was able to meet up with some old friends from Texas that I haven’t seen in over 5 years. I love making new memories!

   

July 7th It was a very very painful day. I laid around most of the day. I also met the new specialist. So far I am very impressed with her. She met me and ordered every test even ones I have never heard of. Her attention to detail made me very happy even if in two weeks i get more bad news from all this testing. Tomorrow She ordered bone and other scans. I am scared but excited to get all these new tests done! Her bed side manner was awesome as well. Then i Went home and did my weekly chemo meds. 

 

July 8th

I got up a little early for me because I had to get my scans done for the Dr. Then walked the Marina . Spent the rest of the day in bed. Pain level an all high. Boo!!

 

July 9th I am not feeling well but my friend from High school is in town, so I used all my spoons to visit with her. Hopefully we don’t wait another 20+ years go by. Good friends are hatd to find..grateful Facebook exists so we really never lost too much time 🙂

  
July 10th I went to Shannons house and visited with my church family. I love these intimate times getting to know them at a deeper level. So blessed with this amazing church family. Later in the evening, Brian surprised me with Mani/pedi. He knew my week was extra hard & boy did my feet & hands need some pampering! 

  
July 11th, Boy is my body giving me a hard time thus week, i feel miserable!! I did however Have Brian take me for a mini ride and he even stopped at a friends jewelry party so I could say Hi. It is very important for me to support my friends. I expect the same in my friends. What a Gorgeous day outside to bad my body wants to stay inside. 

July 12th Church service really touched my heart this morning and i realized how protective i am of my church family. For the privacy of my church members i will not name the parties involved but i do want to say this; i have watched people come and then make rude comments and or snicker when they realize this is not the church for them and/or are visiting a member of our church, if you are this type of person, please just excuse yourself and walk out quietly, just because this is not your cup of tea does not mean we want to hear you make rude comments about the place we love! (There are many churches, i pray you find the one for you) We are a bunch of misfits, we are unlike any church i have ever been too & i love it!!! Yes our pastor is probably different from who you’ve seen but i have never wanted to be closer to God than i do at this very moment. Pastor Eric inspires me to be closer to our God and to be a better person. Which leads me to this other issue i recently experienced at church. A visitor came and was making snide remarks and shaking their head in a negative manner and was just being completely disruptive. I had to use all my spoons to stay in my seat. All i wanted to do was say excuse me can you please either just sit there or leave!! I realize you are a guest of a member but no one hog tied you and forced you to be here. So since you are here,Try looking around and you will see over 200 hundred faithful family members who love not only this place of worship but our pastor! We are proud of our pasyor and his dedication not only to God but to us, the church family. 

 I love when I go home and feel so much love around me….however this past sunday i went home crying. Crying because i realized i am super protective and i even though i should not allow this person to hurt my feelings, i am human & it really affected me! Word of advice, please don’t disrespect others at their place of worship, you make an a** out of yourself when you act like you did. If your a visitor, just be polite, our pastor doesn’t talk all day! 🙂 

July 13th Monday, this day was just awful & busy. I had a Dr apt with the surgery Dr and then he gave me the yucky gut mix to drink for the next few hours. Man is this stuff crappy. It tasted like pure salt and really upset my belly. Yes I know it is meant to empty your gut but this was just yucky!! For most people they drink it in 2 hours and within the 3rd hour, they are emptying their guts, but for me due to my gastroparesis, it took 8 hrs…….and since I feel asleep…I ended up destroying the bed mattress. Not a day/night i wish to repeat!

 

Tuesday 14. Surgery day finally here….It took 9 Iv’s to get going. I was so frustrated. Then the meds did not put me to sleep fully so I was awake during the surgery. Thankfully the Dr Numbed my back up for the most part. I only threatned to kill him like twice…LOL After surgery we went home and that is when the real pain started. I was so sick and the pain was 50 on a scale 1 to 10. I sat in the bathroom and cried to God to take the pain away. Did I say this was only the first part of the surgery?! Next month is part 2. I don’t know if I will be doing part 2!!!! Also thankfully a friend of ours made dinner 🙂 

July 15th Wednesday. I just had to get out. The Dr called and said that I could walk for about an hour and then I had to go back to bed….i ran out of the door (well not ran but you get the point) I then went to the LOH(ladies of Harley) meeting at pj’s. It was good to be out with friends. 

 July 16th which was yesterday, i got out of bed and ran some much needed errands, walked the dog and then went back to bed. 

  
 Today is Friday and i have really no plans but relaxing, i got maybe 2 hours of sleep due to pain. I have a lot more to post this week but i am exhausted and hurting! So please have patience and i will write more soon:-)

Thanks for all the support and love! 

 

Last June Post

End of June…

Sunday I enjoyed A really great sermon by our pastor at church!!! I love when I can leave church and feel so inspired!! I then had  lunch with christine @ sassafras. Sassafras has become one of my favorite places to eat. Fresh veggies & unique menu items..Yummy

Monday I walked with Khali. That was the most of my energy for that day but we did manage to walk 2 miles which is pretty good! Check out her minion bootie socks 🙂

  
Tues i was not feeling well but managed to go swimming and later enjoy the weekly chemo meds. 

Wed my pain was an all high and when I say and all high pain day, I mean it’s back tearing out bloody pain. But even with the pain, i had the need to be around my church family for their teen activity, called spike night. I also recieved the bedt news…My Friend got his new liver!!!!!I just want to take a moment to say how good God is when you watch somebody for over a year and a half struggle with their health  and then be amazed by watching God’s work through them & their trials. I am so blessed to know this person & very grateful and I pray he continues to heal and then he comes home soon!!!

Thursday i relaxed and cheated with some PIZZA(sorry body)  🙂 

 Friday I was really exhausted but I did enjoy some early Fourth of July festivities with some friends, some I hadn’t seen in a very long time so it was really awesome to get out and see them.

  
Fourth of July ……,first off I was very upset that the nugget who does our firework show here in Nevada and the way they just kept talking about their sponsors their sponsors their sponsors and I wasn’t hearing much about our soldiers to me the Fourth of July is about our past and present heroes the ones who put their lives on the line for our freedoms. So thank you heroes thank you for the land that I love America & our freedoms. I sleep safe at night because of you.Thank YOU

I also think that this is an appropriate time to just reflect on some past memories…. I just want to say thank you Neitzke family for giving me some of the most amazing firework shows I have ever seen in my life I really miss you guys!!  What I would do to see one more Neitzke firework display.

Health FYI…..This coming week I will see a new specialist who I am hoping and praying will either change my chemo drugs and or move me to other drugs similar to chemo drugs or just do something also we are now on the countdown to my surgery. My surgery is July 14 at 9 AM.

Just a reminder I appreciate all of you who read my posts and do not judge me by my grammar. I use a voice program most of the time due to my hand pain so thanks for hanging in with me. I hope everyone has a fantastic week and you’re goal for this week is to be an inspiration to someone…

Quote of the week…