I am so excited to be starting this blog! My wish is to not only show and tell about my journey with Chronic Lyme Disease and how it effects my relationships, especially with my beautiful son. My wish is also to connect with others, and build a trusting support group. Let's get started!
This is really cool! I am proud of you and hope you can get some relief by being able to talk about it, I know it has helped me.
ReplyDeleteYour cousin,
Sarah K
Thank you for your support Sarah! Please be part of this with me. This blog is for not only mothers with chronic diseases, but for anyone who has chronic issues(like pain). Here is a question for you. Do you feel that your chronic pain has made you not be able to participate fully in relationships with important people in you life? What emotions does thinking about this bring up? XO.KT
ReplyDeleteKatie,
ReplyDeleteI am so sorry to hear that you have this disease, I am not aware of it but I promise to research it.
I do know what it is like to suffer from illness, though mine is watching the people I love most suffer from cancer.
Please let me know what support I can give you.
Your old roomie
Kate
My roomate from a very important time in my life (Oldfields Bording School), asked me a very good question. She asked, " Katie what are you afraid of? " Not one person has asked me that question comming from a place of REALLY wanting to know. I felt my friend however did, so here at least are the ones that pop right into my head.has I think at least for me, friends and family just want to hear, " Ok, what is you docter going to do to treat your Lyme Disease? How long will your treatment be? and then as soon as I start talking about "How I Feel", I get, "You will be just fine!", "Have a sense of humor about it!", this one is my favorite: "Stay Positive!" So, I pretend to agree, and put my "I know your right" smile on my face, when in my heart and sole I am in a blind panic! So, back to my roomates question, what am I afraid of (these are not in order of intensity)? #1 Am I going to die? #2 what will this do to my beautiful son (watching me deal with my treatment) #3 I will have to depend on others, who I do not find depenable. #4 when I am out of comition, I will not be able to control everything that has to do with my son. #5 I will miss even more of my sons life events. #6 willl it scare my son to see me in so much pain? #7 how much will it hurt this time? #8 will I be forgotten about by my friends and family? #9 will I ever be well enough to have the other child my husband and I want? #10 will I ever be able to let go of the feeling guilty. If anyone feels any of this for any reason, I would love to hear from you. And Kate, Thank you.
ReplyDeleteKatie, It's nice to be able to know more about what it is that you're going through. Thanks for sharing this. Love, Cara
ReplyDeleteDear Katie, Thank you for inviting me to be part of this. It's important that those around you know how you do feel (instead of us telling you how we think you 'should' feel) so we can do a better, and more sensitive, job of supporting you. One thing I do know--You will NOT be forgotten by your friends and family. You are an incredible person who is not forgettable! Love, Aunt Cheryl
ReplyDeleteKT,
ReplyDeleteWhat a wonderful thing you are doing. You have many people that love and support you. It is a good idea to share what you are feeling and going through (hense, all the "stay positive" and "just smile" comments) when all you want to do is scream and punch someone in the face.....but if you need to, go ahead---by all means you are allowed, you didn't ask for any of this. You are dealing with your disease with dignity and respect. As for the little man, I truely believe God does not give out what people can't handle- he will grow to be a sensitive, strong and amazing adult. Through all your pain and suffering you are molding him into the man he will become- and with you as his mother he already is far ahead of the pack. So, to you, my dear OLD (in more ways than one) friend, scream, fight, cry- do what you need to do. I, as always will be here for you.
All my love and support,
Claire
Thank you all for your supporting my wife in this new venture! Please feel free to write in with any of your advice or stories! You all are what keeps her going. Best,Bruce
ReplyDeleteQuestion from Katie: Do you feel that your chronic pain has made you not be able to participate fully in relationships with important people in you life?
ReplyDeleteAnswer from Sarah: YES! I sure do, I feel like my family relationships center around my health sometimes. Conversations consist of a list of questions vs. just catching up. For example, are you going to the gym? How's your meal plan How is your depression? How's your anxiety? or people start telling me that if they could just get over here and clean my house then it would be all set and ready to go. What some don't realize that it's a weekly if not daily thing. I can't always "keep it up" I am afraid they will get frustrated and won't want to help me anymore. If they come over here and "fix" things, then I'm just going to end up messing it up somehow. That's frustrating. I would like to do it myself but others think that I'll take to long when they could just do it in a few weekends, etc.
Honestly, I don't really know how I feel about all that but that seems to be the only things people are interested in talking about with me. Sometimes I do want to talk about it, but on my time not as a perfunctory greeting.
I have problems with depressions though that makes normal interactions suspicious to me anyway.
Over all, I just want to talk like I'm "normal."
But, I also want to let people know if there is something wrong because I know they want to know because they care.
It's a Catch 22.
I am just full of emotions that I feel are raw and sometimes I wish I could just go and take a nap, even at another house, it's hard because most people do things in "visits" where it would be quite an inconvenience for me to take an hour out to go sleep.
I haven't found a great balance yet, but I have an awesome family! You are inspiring to me, I know if you can do it, I have to be able to. Don't get me wrong, sometimes I wonder what I did to get punished like this?
I am blessed to have the supportive family that I do and am so happy that I have so many good things in my life, it's just that sometimes, I wonder when they are going to get sick of me and leave me? This can't be unconditional, can it?
I know that's a lot but I hope I have answered your questions <3
You absolutly answered my question. And I am learning that as far as family goes, love is unconditional !! My love for you is and always will be.
ReplyDelete