Hello I hope everyone is doing great and is had a wonderful may! I’m so sorry that I have been unable to do my weekly post, my body unfortunately has all control over what I do and when I do it, at the moment. If I’m not at work i am at home in bed or in my super comfy rocking recliner! Lately I haven’t felt up to doing anything extra especially write, which really makes me depressed because I know that writing helps me get through what I’m dealing with.
So lets get right down to it!!
Truth be told when I first began writing this post, my Dr had doubled one of my yucky meds. Now i am unsure if this is what i want to continue, as it is making me very sick and miserable. Not to be to TMI, but lets just say the shower has been the safest place for me. When you have sickness coming out of both ends, its just best to spend some time in the shower. And then i have the extreme scream all night pain that no pain killer is even touching. * enter sad face here*
I’m having a lot of trouble with my ankles they are so tender that you cannot even take your finger and rub them it’s like someone is taking a saw and just going back-and-forth. My spine is compressing around the nerves and muscles which causes pain that i can’t even put words too. But it is the kind of pain that just makes you want to jump off a cliff.
My skin also is peeling and I now have rashes on my arms my thighs and my face. I have no idea if this is due to one of the diseases or this is due to the double dosing of my medications I don’t know but I wish it would just go away it is very itchy and I don’t like the way it looks but who would?! These diseases suck.
This month i also visited the vampire office as i call it….
Emotionally The month of May has just been like a roller coaster that I can’t get off of! when your health is attacking you all over. All you want to do is unzip your body and run with your bones.. Although with my bone problems I guess I don’t want to run with my bones either Ha! But you get the point!
I’ve been feeling very vulnerable….when you’re sick you feel all these feelings all at once you feel angry you feel scared you feel sad you feel beat down and guilty. You know it’s really hard watching the way people look at you and watching them either feel sorry for you or they have pity for you. And then you have other people who smother you with kindness and yet you’re so afraid to even let them be kind to you because you’re afraid that at some point the other shoe is going to drop and something bad is going to happen. And then I have doctors who I understand are human and not perfect but I trust them to give me the best care that they know how to give and then they don’t listen to me when I’m screaming and begging them to please change my meds, that I’m suffering more than I was before please doctor I’m trusting you to help me please help me. But the help never comes and I’m left alone to figure out what the fuck I’m supposed to do and how I’m supposed to do it with what energy I don’t have. I really believe that Dr’s take on way too many patients and then the level of care goes to shit. With this said, i want to pass on a very valuable tool that i now do every time at every appointment. RECORD the entire appt* please check your local state laws because you may have to get consent first, lucky for me, i live in Nevada, where i don’t have to ask them for consent* This way you can go back and listen to every thing that was said and not said. I have found this too be very helpful. (i actually record many things now) You will find this helps in many aspects of your life.
My first bitch of this past month is, i am very tired of waiting in the waiting room for some of these appts for 45 or more min only to see the actually Dr a full 5 min. I find this to be bullshit. How do they sleep at night? Must be nice to charge $350 an appt for 5 shit minutes. AARG
I am VERY proactive about my health and currently i am looking into some Dr/ trials in Southern Cali. However my specialist is making me jump through hoops before i can even get the process going. WHY do they do this? Is it because they want to keep you under their thumb and their way of thinking? Do i not have the right to keep looking for better care? Last i checked this is MY LIFE. I now have to make another appt which at her office is 3 months out in order just to FREAKING talk about going to CALI. I call bullshit, fill out the damn referral and let me GO.
Do you ever feel like if people spent the amount of time taking care of you as much time as they spend on their electronics ie phone, you would feel better than you do? It amazes me on how much people spend on their phones. It is getting harder and harder to get people to actually look at you face to face and have a real conversation, let alone notice that you are suffering. Take time for others, put down the electronics, their is a LIFE outside the internet and it is passing YOU by. Someday we all die and none of us will be able to get that time back. I am sick and i am not getting better, many of us aren’t so take the time for us/family or get the fuck out. Someone would jump at the chance to love us. And that goes for anyone NOT just us Spoonies…….
I also want to say that i have felt that i was being passed by for opportunities because i am sick in many aspects of my life. Or how the sicker i got i noticed how some people TRIED to push me OUT of some things i love to do. Truth be told I know i am good at a lot of things, even sick. For example, At work, i focus on costumer service and being the best person i can be (even when all i want to do is drop dead)…i would like to say i AM a valuable asset to the company. Every week several customers comment on what a great job i do, even though they know i feel crappy. I LOVE when others notice what i do and are appreciative that i go above and beyond.No one is ever perfect, even the healthy….Just do what YOU LOVE and do it the best you can! I know I DO!!!! No matter what ANYONE says.
Another example is my home life, on good days i work my ass off in the yard and keeping up with the day to day home stuff, I care what my home looks like and i am willing to use what energy i have on it, even if no one notices. Just this last week, i used my 2 hours of energy on my flower area and taking care of the backyard. Here are some photos of my hard work. Big difference in the before pic and after pic of the back yard. There is still a lot to do but my sick ass can only do so much.
Below is my flower are which i am very happy and proud of because even when i am feeling my worst, i push my self to get out and make sure my flowers are doing ok.
The reason i bring ALL this up is because, I have read several blogs from fellow spoonies that say they feel bad because as their disease takes over, they don’t believe in themselves as a mom, wife, coworker, employee etc. Well i am here to say BULLSHIT, do not settle yourself short. Believe in yourself. I don’t let others take from me what i KNOW i do WELL. So we are not on “point” all times, SO WHAT!!!! They would not be either if they were weekly digesting POISON meds, pain meds and going through all the side effects the meds and the disease give us. Always believe in yourself. Never sell yourself short. *if you ever feel like someone is discriminating against you, take the proper steps to get it resolved*
I was able to go out on a ride this past week. It felt so good to get out in the sun and wind. Riding makes me feel like i am doing better than i really am. Everyone including the healthy need to remember to get out once and awhile and enjoy life!
I also do some volunteer work, i currently am a foster parent for furbabys with the Humane Society. My current fur kids are super cute and they remind me to laugh and smile. If you are local and want to adopt, please let me know. And remember to spay and neuter!
I would like to end this post with this….. In this past year I have been lucky to meet another spoonie warrior who struggles with some of the same stuff i do. She may not think so, but i admire what she is able to do. She is not only suffering day to day with an autoimmune disease but she is also a very active mother to her young kids, a wife and she works. I bring this up because her hubby recently did a really great thing. Not knowing how it would turnout because lets be honest when you are sick, or you have kids, nothing is perfect….he went out of his way to give her a special day. She could not be more deserving! I hope that her day was awesome and i hope that by me writing this reminds others to do the same. Take time for each other. Sometimes you can get caught up in being SICK, being a PARENT, being an EMPLOYEE, being a WIFE or HUBBY etc. No one is perfect and no life is perfect but Life is Short, remember that! Even when your body doesn’t want to take a break, take a break!! Remind yourself who is BOSS, just do not over do it. If you are alone then take yourself out, you deserve it….
UPDATE***********Today is June 1st and i already had this post done and then this morning another shit bomb got dropped on me. My health is crazy and things are not going as i thought. At this moment this is all i will say as right now, i need to digest the new info, talk to the Dr and figure out what is next for me. If i am to be honest, i want to just stop all meds, which i know will only be a faster death sentence but if you knew what i was going through now, then maybe you would understand my way of thinking. I am extremely overwhelmed and very tired of all of this. I am trying very hard reminding myself God has a purpose for me, just like he has a purpose for us all. I appreciate all the prayers and well wishes. Many of you keep me sane when all i want to do is go batty. I promise to keep you all updated. Enjoy the weather, i plan on getting some light walking done and a birthday trip planed for myself…….my body doesn’t know it yet but this is MY birthday month and i want to escape for a few days…….we shall see if i get what i want! HA
love you all times infiniti….Kari