Feeling Spoonless

This week was a fairly busy week for someone who has very little energy.

Last Sunday i made it to church which i was happy about. It was our 5 year church anniversary. I enjoyed a great sermon and visited with a few friends. Then went home watered the grass and went to bed.

Monday i spent on the couch watching tv and later went back to The tattoo shop for another 3 hour adventure. 

Tuesday i thought i would have a relaxing day as it was my birthday but soon found out the guest bathroom needed to be cleaned and since i had company coming over it had to be taken care of. After cleaning the bathroom and then spending a little over an hour picking up the house..the guests cancelled due to something out of their control. Then my daughter got called in to work and i found myself completely exhausted and alone. (Enter sad face here) Later in the evening we went out for my free Red Robin birthday meal which was Awesome!! Then a short motorcycle ride, crap Chemo meds and off to bed i went! 

Wednesday i did some grocery shopping and also managed to wash the car and use my birthday gift card.  As you can see the Car wash was very entertaining…i really need to get out more😊

  

Thursday i woke up with a yucky headache, lately i have been having many of them and the Dr said it is now time for a brain scan as i could have tumors and or lesions from the disease or it could be from the spine compressing. Whatever it is, it needs to go AWAY. I did manage to clean the kitchen and go to a jewerly party. Ya ME

Friday, i didn’t do anything but crawl to the kitchen for water and to the bathroom. I was exhausted and very sick. I spent the majority of the day screaming/crying in pain and discomfort. 

Saturday morning i forced my self to get up at 7am because i wanted to go on the Folsom/Tahoe ride no matter what my body wanted. We made it to Folsom by way of back roads before my health bit me in the rear. My body was screaming at me for overdoing it. But i still rode 320miles and for me that was Great.  

  Somedays i just want to say…..Multiple organ Ra YOU DON’T OWN ME but i think Sometimes you just have to listen to your body even if all you want to do is get out for a few hours. For me; this week i just had to get OUT of bed for awhile,so if it meant extra pain, then so be it!  I hope everyone had a great week. Enjoy the weather☀️💧

Psalm 139:9-10

If i take the wings of the morning and dwell in the uttermost parts of the sea; even there shall your hand lead me and your right hand shall hold me.

Another week fighting this damn disease

I first want to start out with a few random thoughts I had this week it was a little bit of a emotional roller coaster I know that probably sounds funny because almost every week is an emotional roller coaster when you are doing with a chronic disease but this week I not only made plans for a surgery that makes me nervous but I also ran into someone that I allowed to make me feel like shit.  It’s funny how you think that you’ve moved on from the situation and then that situation smacks you right in the face and you’re reminded very quickly that that pain is still very real and alive within yourself. I have also realized that no  matter how sick you are, you still have to deal with and go through real life stuff.  I don’t know why for even one second I thought that just because I’m sick the world would stop and be nice to me but I did. Funny me! I think sometimes we have to stop and remind ourselves that we’re human we’re going to make mistakes and everybody else around us will also make mistakes and that’s okay none of us are perfect……that reminds me I’m doing a little bible/self-help workbook.. every day I learn something new about myself and how I act or react to things around me.

 I am in constant pain 24/7 so sometimes my attitude reflects that and whether someone is being nice or rude to me it doesn’t matter; I can bite your head off. What I’m trying to say is that if you’re around someone who is chronically terminally L you need to give them a little bit of a break because we do and can overreact in certain situations because we don’t feel good or maybe we don’t want to be bothered with your stupid question because that’s what we think it is at that moment. It’s almost like we’re in a different world than you are. I do not know if I would still be where I am if I did not have a support group because I find so much strength in other people with my disease. I know I’m not alone. When i complain, scream and yell about my pain they are the first ones to be like yeah we know what that feels like!!! “We know” is my favorite phrase without it I feel so alone. By no means am I saying it’s okay to treat others around you bad just because you’re dying or dealing with a chronic disease and you’re in a lot of pain; I’m just asking for some compassion and you can nicely say, “hey that hurt my feelings” at another time when we are in a better mind frame. 

On to this past weeks excitement or lack thereof 🙂 

Sunday went to church in the morning and I planned on going to the marina after church but ended up being too sick

Monday I woke up with some really bad hand and wrist pain but it’s later was surprised by my friend LeAne who’s kind husband bought me a really awesome gift that will hopefully help my hands a little bit. Later I went to One of my specialists where I did my third drug test of the month and made surgery plans for June 30! 

Tuesday woke up with severe wrist and ankle pain in fact I would say my pain was over 10 on that stupid scale of 1 to 10! So I spent the entire day in bed and evening in bed only time I got up was to get something to eat and to take my chemo meds.

Wednesday I got up and I was just very dizzy and exhausted from the chemo meds and laid around the house all day watching house of cards season three pain level at six. Love this show!

Thursday morning I got up at a decent hour and went to the store to get a few items to work on my helmet decor 🙂 finally a few hours out of bed!!! Then I took out my dog to the marina and walked the 2 miles. There went my energy!!

Friday i walked 2 miles then spent 7 hours with my tattoo guy!! I was exhausted but i have been planning this for months!!

  
Sat I slept in then had lunch with friends in Carson. 

This is my Birthday week(Tues)so i see Cake in my Future!! Woohoo have a Great week & enjoy the weather💋

****This weeks Reader challenge…post a pic of your favorite tattoo…one you have or don’t have!

June June June

All the things I’ve taken for granted! I first want to talk about all the things we take for granted that we don’t even realize tonight I’m sitting here after a motorcycle ride waiting for someone to come take my boots and pants off, because I can no longer do it myself. It reminded me of this picture that I saw this week that had a picture of a woman trying to put on her bra and it said now we wish our husband/boyfriend would help us put our bra back on ha ha you get it?! Well it’s just not a joke to us it’s also the truth our hands hurt so badly and the energy it takes to actually remove something or put something on Is a lot. Sitting here I’m reminded about all the things I took for granted I never once thought about walking talking picking something up putting something down brushing my teeth brushing my hair driving a car walking the dog I just did it I never thought about how it all worked and quite honestly I didn’t care! Now I think about everything sometimes it takes me 15 to 20 minutes to just put my legs over the bed and then I have to think about getting down from the bed and then I have to decide whether I have enough energy to go to the bathroom to brush my teeth or just walk to the closet and put some clothes on. Either way I’m going to use more than 50% of my energy for that day doing those things and that’s just 10 minutes after I wake up. So you can imagine how the rest of my days usually go.

Ok enough of the weekly rant and onto the weekly post! 

   Sunday June 7th, I spent going to church & then at the gun range! A wonderful day with the Lord and guns! Boy was it hot but i was so excited to just be OUT of bed!!

  
Monday i was in bed all day, i apparently over did it Sunday.. And it has been an emotional few days…bad health news always brings me down! Really praying for a miracle, i am to young to die….but i guess its not up to ME😢

Tuesday, i had a little energy so i went to Agate Bay in California and took some great pictures! Later that evening i did my chemo yucky meds & then off to bed i went.

   
 Wednesday it rained all day and i experienced a lot of pain so it was a day of, pain meds, heating pads, rain & movies!!

Thursday i was able to walk the Marina and i recieved some good news i will be sharing soon. Dont get too excited though its not good health news…but good news nonetheless. 

Fri i walked the marina AGAIN with my dog and alrhough i was in pain, the sun felt great. Later Friday eve, we went to a friend  graduation party! So proud of all the Hogh School Grads!!! 

Saturday we went on a hog chapter ride. It was a 5 hour ride and i had a lot of time to think.  My “family” isnt perfect and they are absent in my life but boy am I  grateful my birth mom gave me the love of riding a Harley. Who knew later in life it would give me the “escape” & “relaxation” i needed to help me through a horribld debilitating disease. So even though your not in my life birth mom, Thank You for this Gift!

   
 

Sunday TODAY i have a very painful what i call chemo/RA headache/bodyache but i managed to get to church and hear our Brother Josh preach a powerful Sermon! Thank you Josh, you did Great! Im Grateful I didn’t have to “school” people on missing church due to Pastor being on vacation!  It was a good turnout!! Now i will push myself to walk the Marina whether my body wants to or not! This coming week is full if Dr Appts, so be prepared to get a ear full later this week!! Until then, Have a Great Week everyone and as always, thanks for all the Support and love💋   

June News

In addition to my weekly post, this post will include my new health update. 
Sunday, May 31st i attended morning church service @SVBC, went home did a few chores and then went back for evening service which was also our AWANA Awards night. I am so blessed to be a part of such an amazing church who supports our future(our kids). 

  Monday 1st day of June!! Spine pain super bad. I was on heating pad all day. Thank goodness for Tyrone Wells music! 
  Tuesday i was not feeling well but i had to get out of the house as it was 89degrees. The dog and walked 2 miles under the beautiful sunshine! I loves every minute of it. I also managed to drive up to the church and help out with organizing the church garage sale. I then went home watched some TV and then took my favorite chemo meds. 
  Wednesday I did some grocery shopping and then received an Urgent message from one of my Dr’s. It was about my most recent blood draw. Long story short, i have the MOST aggressive form of my disease. Usually when you have the numbers i have, most if not all medicines used to help “slow”‘the disease do not work. 

  

To be “transparent” is what i have always promised to be, so here is how I really feel about the new health news. I really think this sucks I feel like I am being suffocated I feel like I am being buried alive I feel like everything I had left is gone now. I feel like my hope is dwindling away I feel a lot of negative energy no matter how positive I try to be. I feel like no one listens and no one understands. People say they’ll do this to help me out but rarely do. And this is why I am so scared and frustrated because the sicker I get the more I have to rely on people and when I can’t rely on the people around me what am I going to do? Who’s going to take care of me? Who is going to be left standing when I turn around to look for help? Who will give me excuses so that they don’t have to see me in pain or in despair. I have been down this road for a long time and this is the kind of stuff that really happens. Sure there are some good people out there and I’m grateful for them but even they have lives to live and they can’t be at my beck and call. Nor do I expect them to. Already this week, I’ve talked to three people about what’s going on and all three people kind of pushed me aside like they didn’t want to hear it, they can’t deal with it. Boy I wish I could do that one day and just push it all aside and pretend like it doesn’t exist. This week has been the most alone I have ever felt and I just wanted to lace up my shoes and run and never look back but unfortunately I guess that means the disease would be running with me and that wouldn’t be any fun, so i had to scratch that idea. 🙁
And outside of all that I still have real life to deal with like housecleaning,laundry, shopping etc. Life doesn’t just stop when you’re sick. Unfortunately you are not assigned a team to help you, after being diagnosed. Then there are attitudes that you have to deal with from other people , Whether it’s on purpose or not you still get treated in a different way. Almost like they’re so frustrated about your condition that they take it out on you. And I’m not just saying this to be mean or anything, I’ve talked to several people with my disease and they also have gone through the same things so it’s real. And it happens. I find it funny that when I speak about my life, that some people that have never dealt with someone being terminally/chronically ill will comment kind of rudely like they have all the answers or they think they know how it should work. Really think about what you say and do around us who are struggling with death, depression, fear etc. For example this week outside of dealing with the new health news I allowed myself to be hurt by a friend. To be honest it’s been a long time since a friend made me cry and on top of everything else I just lost it. I was reminded that people aren’t perfect and people are going to hurt me regardless of my health condition. Sometimes I get so wrapped up in my health I forget about real life things like people hurting you etc. It’s okay people make mistakes none of us are perfect and I’m going to leave it at that. Lesson learned. 

At the end of the day God is so much bigger than any of our problems. Which for me to say sometimes it’s really hard because I am facing something super scary and its my life. It’s painful it’s scary it makes me angry it frustrates me! But I do know God is bigger than this and that God is going to get me through this. And it’s okay for me to have negative times it’s okay for me to be sad angry and mad it’s okay I’m human.

 People have asked if I’m angry at God or why I believe in God when I am so sick. My first questions back to people who ask me that, is what’s so bad about believing in God?! What bad comes out of believing? 

God did not make me sick and I have faith God will get me through this. As I’ve said before I believe God has a plan bigger then we have for ourselves. And even though I get frustrated angry and scared I never lose faith. I know where I’m going there will be no more pain or suffering and I’m excited about that but right now while I’m going through all the pain and suffering it’s scary. 

Also wednesday night after the health drama, some of the church teens came by with Brother Shaun and helped me do some yard work! I am so blessed to have these young adults in my life! And Shaun is a Huge blessing! So Grateful.

Friday, well I just woke up and I’m having some pain in my hands and my legs but I hope to at least walk a mile today whether my body wants to or not. Today’s one of those days that I have to force myself to move and push through the pain because depression can sneak up on you very fast when you’re always laying in bed in pain and thinking of all the scary thing is you’re going through. This is partly why suicide is so high with our disease. Be kind and remember to love each other you never know what someone’s going through, not all diseases or battles are visible. Have a great weekend!! Thanks for continuing to be a part of my life and supporting me. If you can please donate a dollar to my Go Fund. My first trip is in seven weeks and then I am trying to raise money so that I can see my 49ers play this year. Thank you
Let not your heart be troubled: ye believe in God, believe also in me. (‭John‬ ‭14‬:‭1‬ KJV)

 Photo of the week…..LOL