Do Not Underestimate US

Happy August Everyone! I hope this Post finds you all doing the best that you can be.

Starting with this post, I want to do things a little differently. I want to break things up into these sections 1. My weekly update, 2. Your Questions Answered 3. Bitch Section 😉 and 4. Final thoughts

My Weekly Update……

 

Tuesday July 25th I was in a lot of pain and nothing seemed to help, and trust me I tried everything! I was able to get my hair cut. I hate to cut it all off but I am so tired of crying while I hold my hair as it falls out. I just need a break from that heartache.

Wednesday through Saturday, I was in  so much misery. The pain was out of control. These are the days that it takes everything I have to keep going. Sometimes I just lay in bed screaming for it all to end and I have learned that, it is OK to do that. I found this amazing art that I think depicts exactly how I feel when the pain is taking over.

Sunday/Monday July 30-31st I only worked a few hours because the pain in my spine and legs was still so unbearable. I often wonder wonder is my purpose here? Why do we all have to suffer in some way? Oh so many questions.

Tuesday August 1st I spent the day in Bed and spent the evening emptying my guts! Oh such good times! NOT

Wednesday I spent most of the day in bed.

Thursday I slept till 11 and then went to the store to get all the new foods for my new “fresh food lifestyle,” that I pray helps with anything I am dealing with. After eating some delicious food, i headed off to work. It felt so good to be out of the damn house and around other people! I am so thankful for my coworkers! They really know how to make me smile and I love how they put up with my picture taking….when I am gone they will appreciate all the memories i took pictures of….(thank you Moses for this awesome “chick” pic) HA!

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Your questions answered….

  1. How do you get your loved ones to understand what you are going through? This is a hard question to answer because truth is no one but someone else going through the same/similar issue will understand. Kind of like when someone is telling you how hard their divorce is, yet you have never been divorced. You can empathize with them but you really have very little clue what they are feeling. I would suggest for them to do research on whatever chronic/terminal/autoimmune disease you are battling. Encourage them to find a support system for themselves. I think it is a good idea to try and sit down with them and have a “real” conversation with them. This should include your fears, their fears, expectations, desires, wants etc. Be upfront with them, do not sugar coat this shit. Our lives can be tough and we need people with us who can be tough when we need them to be.  Even with all I am  suggesting, just be prepared that anyone on your path will fail you at some point, because we are all human and lets face it, taking care of us can be draining. I know it is draining on us too…It is just the way it is! If none of the above works, you can do what i do…I either keep forgiving or I just kick them off my path….Because time is short, we can either keep explaining/educating or we can just move on….I hope this helps 😉
  2. How do you stay so positive week to week? I actually found this question funny, because I do not see myself positive week to week. In fact sometimes it takes EVERY INCH OF ME to smile. So thank you for saying that you see me so positive, there is hope for me yet! HA! On a serious note, I work very hard to not be angry. Because I am angry, real angry! These autoimmune diseases have taken things from me that I worked very hard for. I have lost a lot on this autoimmune journey. On the flip side, I have made a lot of new friends who help me continue on this new journey. I have learned a lot about food and what is good for our body and what is not. I have learned to stop and smell the carnations. I have a whole new outlook on life. I no longer take walking, running, talking, dancing , singing etc for granted. With all that said the things that help me be positive is my love for God, my family and my small group of friends. Music is also a great tool I use. A friend of mine Tyrone Wells who is a singer/songwriter writes amazing songs that really uplift my spirit. Emily Hearn is also another great artist who speaks to me through her music.  I also push myself to work 10-15 hours a week, this gets me out of bed, out of the house and around people. This is very important. I also love to write, this helps get out whatever is in my head. If you find yourself battling demons, try these above suggestions, or do something that makes you happy whether that is shopping, painting, coloring, horseback riding, talking to friends, watching a movie etc.

 

Bitching is what I do best…. Ha!

The Other day I was talking to another Spoonie who has a lot in common with myself and we were talking about how people sometimes forget that we are sick. What I mean by this is they expect us to do everything and then some with zero to little energy and with severe pain. These last few weeks I am dealing with 10 million pain  (as i call it) but still go to work, go grocery shopping, do laundry, clean the house etc. As you can imagine, sometimes the laundry just sits there, the dog fur takes over the floor, i miss work etc because I just can’t physically do it all. So outside of everyone else’s expectations, I also put a lot on my self. For example I used to be able to do it all, I am an A personality which means I like it done the way I do it…the right way 🙂 LOL  So when I can’t get to this or that my mind goes in overdrive and I feel like I am failing at everything. This situation is the shits! 

I think this quote is pretty accurate for many people especially me.  When  i was younger my “A personality” would waste time arguing with everyone who stood in my way or frustrated me…. :-)…… but now I just sit and watch these types of people drown in their own bullshit. I definitely think more than I speak now…thank goodness for that! I guess we do get wiser as we age!

Final Thoughts…

I have been getting a lot of messages about spoonies doubting themselves and feeling like nothing will ever go right now that they are sick. I completely 100% agree with this. I get it, I am right there with you all.  I think sometimes we get so wrapped up in our own sickness that we can not find any way out. Personally I get frustrated with those around me who can escape me(for lack of a better word.) Brian gets to go to work and not have to listen to me in pain or watch me throw up for hours on end. People at work rarely see the shit I go through, they get the, “I am feeling OK Kari.” But for me, it NEVER ends. I always feel sick, some days are just better than others. I often get caught up in all the negative especially when I have not had a good day in weeks. I suggest we all once a week remind ourselves of what we have accomplished sick. For me I go to all the things people said I could not do…and then I just smirk…I have been so lucky to do all the things I have done..I love that I have that “push through” attitude!

I have taken many gun and knife classes,I also have done some pretty amazing things like go with Tyrone Wells on his acoustic tour. I am so blessed that we are friends! If you have not heard of Tyrone wells…please do yourself a favor!!

I forgave my birth mom even when nothing more came of it. When I am in so much pain that I just want to die and I am screaming for her, she never comes. For those of you who have your mom’s…take a moment and realize how lucky you are.

However, I am so lucky to have my BFF visit every year..cause she LOVES me…..just a little……

I miss you so much Rhonda. I hope you know what an amazing friend you are! You are my everything…OXOX

I am in the RGJ hall of fame…and I was part of the California NOH8 project.

I rode all the way with Brian on the MOTORCYCLE to Sturgis and back last summer…and I did it ALL while doing my chemo and biologics! That was NOT easy at all.

More importantly I have survived all of this and more…

    21 surgeries and a whole bunch of poison meds later…….And I am still FIGHTING! Never forget how far You have come!

We can do this! Do not only remember the Bad in our lives! Remind yourself of all the good you have done and all the memories you are making with others! I know it gets hard when some of us are taking our lives and or dying from health complications. I know its hard when you are spending all your time in the bathroom, in the hospital, in so much damn pain! Trust me this is how I feel 80% of the time…

“I can’t due this anymore,” is heard almost daily in this household! But somehow with the grace of God, I keep standing back up. I keep going.  I know God has a higher purpose for me, even though I do not understand what that is right now. I would like to think that it is because I am not done here even though I feel so tired of all of this….I really hope this quote is true…..not because I want to die but because I want this fight to be over. I am DONE fighting my body…I am tired…very tired……

Until next week….keeping hanging on even if by a thread! As always if YOU need to talk to someone who understands….Email me or DM @openkari…You are not alone…..I AM here….