Diary of a sick girl: 4

Right now I sit here thinking I should be writing about my sickness…"catching people up if you will".

All I can think about, right now, in this moment, 8:47 pm on Monday
August 14th…is that my little boy is starting kindergarten in two
weeks. TWO weeks…and I have let him down.

I have so many emotions whirling around me right now…I am trying
desperately to get this out through tears and a massive headache.

I have always been someone who feels like time is always one step
ahead and this is another occasion where I have simply ran out of time.

I had plans of hanging out at the pool or bike riding to the park…
Cuddling and playing "go fish" and racecars…
Moments of story-telling and question and answer…
My plans have not worked out it would seem.

Instead we have spent hours driving to Dr’s and testing centers…
days when "mommy" just couldn’t be fun…
moments when "mommy" just wasn’t there.

Moments I’d like to forget…
My children seeing me taken by ambulance from the Denver airport.
Jaden sharing his birthday with a visit to the ER for mom.
Madi asking me if I’d be alive on her birthday…
and countless times they sat in the Dr’s office waiting for results.

Moments I will never forget…
The precise moment I realized that life is too terribly short, that the ones that love me the most…are right here.
The endless moments I have realized who my real friends are.
The days and days of praying…and the gentle peace that finally came.

How do you let go of guilt you feel you shouldn’t be responsible for?
How do you make up all the moments lost?
How do you keep a smile for them when you are scared inside?

I have finally answered those questions for myself…
You just let go.
You make better moments.
You just keep smiling.

So to the update:

I’ve had some major tests come back and they were good results for
the most part. Right now the Dr’s think I have fibromyalgia or a few other things but are
still testing.
My days are getting better. Some are almost normal
(minus the headaches) but some are a struggle (hopefully there will be
less of these).

I will share with you some photos that Jaden took on one of the good days…
At
5 I am amazed at how easily photography comes to him. I am glad in the
midst of this storm…we had some time together.

We were waiting for friends in Austin last week and he had the camera and my full attention and I had a moment where I felt time stop…literally.

This was one of the first full days I spent out of the house and it was fun…for us both:)

I guess I could show you the ones he took of the sky and my feet and the wall while trying to take these…but they are not great:)

I hope all of you are making your own special memories…

I have two weeks until my precious Jade is gone for 8 hrs a day…and I don’t plan on wasting one minute of it.

I may not be able to erase the past month…but I can certainly make it a smaller memory by creating bigger ones.

Much love,

kb

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31 Comments to “Diary of a sick girl: 4”

  1. Kimberly,
    It is very difficult on a parent when you are sick and worried about the effect your illness is having on your children. I can tell you from experience that this experience will make them stronger and more empathetic people. When I was diagnosed with MS 6 years ago, my children were 10, 5, and 3. We were very honest right from the beginning on how our lives were going to change. They all learned how to give me my daily shot, even my three year old, they watched me very carefully to make sure I did not over do it. When I had to start using a cane, they all brought me in for show and tell to explain that yes, she now walks with a cane but she is the same person that she was before. They taught their classmates not to stare at people in wheelchairs but to offer them help opening doors and whatever else they might need. Sure, there are times now when I have just had my monthly infusion therapy which gives me a nasty headache that I cannot swim with them or shoot pool. But they know to be quiet and they bring me food, or pillows and have learned to take very good care of me. My two oldest are boys and they always open the door for me and anyone else coming in or out. They make sure that one of them is next to me in case I fall. My daughter who is now 9 has learned how to cook for times when I am just too tired.
    Do I miss out on memories, probably. Just this week I tried to take each of them school shopping but my legs give out after 1 hour. I feel so guilty. All three of them told me that it is not the quantity of time we spend together but the quality. So it will take us a few extra days to finish shopping, we will still have fun. So please don’t feel guilty. Your children will grow up to be helpful, respectful, empathic and wonderful people. In time you will figure out what you can and cannot do and from there you will make the best memories imaginable. You are in my prayers daily and I trust that God will take care of you and your family. Sorry for the long comment.
    Have a groovy week!
    Love and God bless,
    Shaun

  2. My sweet Kim. You are still in my thoughts and prayers.
    You are such a lovely soul. Nobody is perfect and stop expecting yourself to be.

  3. He’s great at photography… and photo shop too?
    Seriously. Sick people don’t have their kids take posed pictures of them. Ick.
    Well maybe mentally sick ones do…

  4. Your children will not hold it against you that you have been ill. They will just be so so so glad that their mummy is ok. Don’t beat yourself up about it…you need to be going to the doctor’s to get yourself better so that you can look after your little ones! Still thinking of you and praying for you.
    Steph
    http://andsocreate.blogspot.com

  5. Sending you a huge HUGE big hug!!

  6. What idiot in their right mind would come on your blog and JUDGE you based on some fukn pictures are you kidding me?? I mean really .. maybe she is the one that is mentally ill..hmm..i’m juss saying .. either way gorgeous .. RAWK on .. and stay beautiful .. anyone in THEIR RIGHT MIND .. would know that sick people have their good days and their bad days .. and it just so happens on your good and bad days you are still hot shyt .. TAKE THAT .. bee-otch .. or wait SICKO!
    Love ya
    Kimmi!

  7. amen sasha.
    don’t you just love people who are so courageous they sign their name?
    yes.
    you are lovely, and i say it always. your children will be okay, they will understand, and they will grow up stronger for seeing just how strong their mum is.
    love you xxx

  8. Kim…sweet beautiful woman….your children understand more then you realize…and they love just the same!!! You are a great mother and you are trying!!! That is all that matters!! Trust me when I say that you trying as a mother means more then you even realize!!!!! I think about you all the time!! Your a wonderful mother!!! Hugs Sweetie!!! Cassandra

  9. Yes Amen Sasha & Rhi… it’s rediculous that ppl can hide behind “anonymous” and get all big and bad… whatever. I love you… so much. Your son is incredibly talented… like his mother! xo

  10. Dear anon…if that is your real name:)
    I really let your comment get to me for a few moments this morning so if that’s what you were going for…mission accomplished.
    However, it quickly faded…with good friends and the realization that you are intitled to write whatever you like because I have made my life public by posting something so personal to me on my blog for the world to see.
    What is sad is that you did not understand where I was coming from. Nor do I think you care to.
    My son LOVES taking photos and I have no problem letting him…and no he is not great…and they were not posed…and yes I did photoshop (Im kinda known for that).
    I don’t know why I felt the need to respond, maybe because you felt the need to attack me as a mother…that is not acceptable.
    I am an open person…too open at times. I choose what goes on my blog…it is a means of expression for me, not just another blog to gain acceptance or to display a fake persona that some people seem to have.
    I know its hard to love people even when they are not talking about rainbows and sunshine but maybe you could try a little.
    I will not allow anymore responses from you so don’t waste your time…we both have wasted enough.
    Love, kb

  11. I can’t imagine the frustration. I know the feeling of ‘time always being a step ahead’ and the anxiety it creates. I have to think about the story of my life and how some parts I have control over and other parts I can only work with. I guess this part of your story wasn’t what you imagined it would be, huh.
    You’ve got such a strong hope in your post, though. Your excitement about your family is a good reminder to enjoy the time at home with them that I so often forget won’t last forever. I think everyone who has been observing and involved in this part of your story will carry it with them and when our lives take a detour from what we were hoping for, we’ll remember the hopeful attitude you showed and take courage.
    I hope this isn’t sounding kind of ‘hallmark’ card-ish. You look great in these photos. Your little man has the eye.
    Sending my thoughts and love your way.
    Rachel

  12. You can’t worry about the lost moments…you are so right. Time is such a gift, so try to look ahead at all the wonderful moments that are going to come.
    I’m so happy to hear you are feeling better. Take it one day at a time….
    hugs.
    p.s.
    Dear anonymous poster,
    You suck. That is all.
    Enough said. πŸ™‚

  13. Really, anon, didn’t your mother ever teach you…If you don’t have anything nice to say…Anyway, your Jaden’s photos made me smile. If it turns out to be fibromyalgia, my friend has been going through a treatment that has truly made her life livable. Let me know if you want to know more about it (it is nontraditional.) I pray that answers come soon. Children are resilient and we are harder on ourselves than they are of us. I can’t wait to see more of your little one’s photos.

  14. I think you’re relationship with your son is something very special. And I can tell you that as time goes on, this period will make your children love you even more. My dad had a brain tumor for ten years starting when I was 4. He was told he had chronic fatigue syndrome and would never be healthy again. Whenever he wasn’t working, he was sleeping or in one of his “Spells,” as he would say. It got worse and worse, and he pretty much just sat around acting like he was in excruciating pain, which he told us later that he wanted to die. Ten years of life like this, and he finally found out that he had a brain tumor. He had surgery, and now he is perfectly healthy. I feel like we are so close now, and part of that is because I know how much he wanted to be a good father but couldn’t be.
    Anyway, I just wanted to say, that sickness can be something like steroids for a relationship. It just makes the love much stronger and more special that it could’ve been before.
    Much love sweetie….
    Mandi

  15. Hey Darling-
    Well finally the Docs are at least putting a name to all this. I wanted to let you know that I to do struggle with FM and I HATE it. Some days are just terrible. I think I have had this since I was a teenager (I am almost 30 now) and I want to believe that it will get better. Anyway, I can’t offer any help on what you can do to make your days better but if ever you jut want to talk, to find out more about it, let me know.
    Please don’t take anything out on yourself. Your children adore you no matter what. You are doing all you can do and they are fully aware of that. Believe me, they are not thinking right now how much they wish they could have their mama back to normal, I think they are thankful you are here and are able to be with them daily, sick or not. Your voice, your touch, your smile, you gentle touch, that is all they need. It is small things like that, that make us “mommys”. Cheer up doll. Don’t be so hard on yourself.
    I just saw the comment that “the unknown” left you. I love that they took the time to share their feelings. JEALOUS, that is all that I can say.
    Have a good one and be safe.
    D

  16. You feeling better .. good .. now bring your azz over and get this damn award lol

  17. I have never commented on your blog before but I’ve been reading your blog for a while…I wanted to ask if you’ve been tested for Lyme Disease. I have many friends and clients I work with who were diagnosed with FM and later found out it was late stage or chronic lyme disease. It’s very difficult to test but incredibly horrible for people to deal with. I really just want to get the word out about Lyme Disease and the effects it’s had on thousands who were incorrectly diagnosed.

  18. I am so there with you. I thought that I was going to die when I first started having the really severe pain from fibromyalgia. I went to so many doctors and had so many tests including a few MRIs I feel guilty almost everyday that I can not do things with my children who are now 10 and 7. I am 41 now and have been dealing with this all for many years. The pain and headaches are not as bad now but I so still have pain everyday. Find yourself a really caring Doctor that will remember that even if you don’t keep complaining about things that they are still there. I pray for you that you will be able to carry on your life and not feel pain. I know how hard this is has been on my children and how much it has affected my relationship with my Husband. There are some really good web sites that might help with choosing some drugs that will make the pain better. All my thoughts are with you on this one. It is a hard road but you are a beautiful woman inside and out and I know that you can make it through.

  19. you are a wonderful person, so glad you are having better days! love your photos πŸ™‚

  20. Hi Kimmie
    seems like we are both coming up for air at the same time…..you are right…you just have to stop….guilt has a habit of hanging around until you do πŸ™‚
    big hugs
    x

  21. ohhh kimmy,
    I am so so sorry to hear about all of this, i feel so awful for you! don’t be hard on yourself about not being able to spend as much time with your kids as you want to, it is NOT your fault and they know that, they will always know that. you are being the best mother that you can to them and that’s all that matters. you just need to be strong and get better. im so sorry, if there’s ANYTHING i can do, please let me know!
    Love,
    Jill

  22. I’m sorry to hear of your pains. There are 3 of us in the family with fibromyalgia. It’s hereditary. Get in to see a Rheumotologist. They are the most knowledable ones to make a diagnosis. It’s tough, but I know that there are things out there to make it more bearable. Lexapro, which is an anti-anxiety/depressant has been a savior to two of us. Flexerall has helped one of us with the pain and another one us has moved on to the Lyrica, which is new on the market and swears by it. Whatever happens, see a Rheumotologist, they know how to go through and make an accurate diagnosis.
    I wish you relief in the future.

  23. You’re so beautiful Kim…

  24. Kim… you’re just gorgeous.. inside and out. I will be thinking of you.. an your family. This too shall pass, and you’re able to enjoy your family again soon. *hugs*

  25. Sometimes all we can do is cope…do the best we can with what we’ve been given. Sounds like you’re doing that, girlfriend. Let the rest go. Hugs, love, peace, blessings.

  26. I am so sorry for your pain and the sadness and mostly for your guilt…hope you get the results soon…you should talk to cheryl manz, another scrapbooker who has fibromalygia(however you spell it!).
    http://www.cherylmanz.typepad.com/ here is her blog!
    hugs.
    tara

  27. Hey–
    You made me a little sad. You can’t live with regrets. I know that is hard but then everything would eat you alive. I sure miss you here. I miss everything that we did together and how much we laughed. I miss everything. Love you!! Jess

  28. Hi Kim, I’v been reading your blog for a few months now, thanks for your honesty and sharing the good and the bad with the rest of the world.
    I suffered from fibromyalgia, the doctors didn’t know how to deal with it so they just gave me pain killers, sleeping pills and when it didn’t work they just upped it to a stronger prescription with no real solution. I was desparate to get better, some days I could not get out of bed and was in a lot of pain, like stabbing in my back and sides, headaches, fatigue and so on. A massage lady recommended someone give me a massage every night with lavender oil, it worked… not over night. My fiance did it every night for almost a month and I was feeling better, being able to sleep and very little back pain etc, I was able to start going for walks and eating better etc. I am fully cured, there is hope, just find what works for you. Hopefully they don’t find anything more then that in your test results.
    You have a beautiful soul.
    Best wishes and love – Nancy

  29. AMEN SASHA…AMEN RHI!!!
    {{{hugs sista}}}}}

  30. thanks ladies for having my back:)

  31. I love your blog.
    You are inspiring, courageous and real.
    Please DO update when you feel well.
    The main part of this being WHEN YOU FEEL WELL. I promise that you’ll have good days. PROMISE.
    Have a beauty-filled day today- no matter what.
    Sammy

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