My Mum has been horrendously sick with a multitude of yuckiness that has been caused by the chemotherapy. The two main culprits that have combined to make Mum’s life miserable are a terrible grinding fatigue and horrible nausea.
It is never a pleasant feeling knowing that you are unable to help a loved one.
I feel very frustrated and small in my inability to help my mother.
And now my daughter as well.
Though it has always been a bit different with Veronica. I always hoped that we would find a doctor that would look at Veronica and say, “Oh yes, I know what you have. It is blah blah blah, here take this magic pill and come back and see me Tuesday fortnight…”
*Sigh*Veronica has finally been diagnosed with Ehlers Danlos syndrome. So finally after a seven year long search for answers, a geneticist examined Veronica and said,” Oh yes a straightforward case. Here are your answers, here is your validation.
” Unfortunately he didn’t have a magic pill.
So here I sit at the computer writing away madly,trying to stop myself from being all mimsy and formulate a plan of attack.
There isn’t much that I can do for my Mother or for Veronica either, apart from what I am doing already. And whilst that is a terrible thing for me to have to admit, that I, the supreme control freak cant actually control what is happening to the ones I love the most .” Hi Mum, Hi Von I love you.” It also means that I can stop looking for my vorpal sword and just focus on supporting the two women who mean the most to me in the whole wide world.
Also there is a voice in my head that whispers to me that things could be much worse.I know that it’s true because generally the voices in my head are full of helpful advice, well except for the one that goes on about zombies in the hospital, that voice needs to develop laryngitis…
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Oh no….more bad news and stress? I’m so sorry 🙁
I wanted to come and wish you Happy Anzac Day….and now I discover I must also congratulate you on your new torso (I wish I could have a new torso, complete with pre-kids boobs!)
It’s just a shame she can’t give you a hug, you sound like you could use one….here, have one from me 🙂
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Even when you cannot take it away, support is what they need most and you have that. Love. Support. And hugs. That’s what they need.
But here’s a {{{hug}}} for you, because all that supporting is exhausting.
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If it’s any consolation, (very small consolation), Veronica is only 20, in 5-10-15 years they may very well find or invent that “magic pill”. Hug your mum for me.
It’s terrible sometimes, when all you can do is stand aside and watch. Hugs Kim.xxx
Kim, the post you tagged me with is up now. I’m sorry it took me so long. It was very hard to do, but I’m glad I finally wrote it.
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Cooment Luv picks up the wrong link again!
Oh sweety, it’s horrible feeling so helpless isn’t it? ((huge hugs)) x
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I had never heard of that illness before so I clicked on your link. This part really made me think: “Because it is often undiagnosed, some instances of Ehlers-Danlos syndrome have been mischaracterized as child abuse.” I certainly hope that’s never happened to you!
I know how it feels to watch the people you love suffer. Watching my sister deteriorate from her cancer was a horrific experience. But you’re right, all you can do is what you’re doing. I’m sorry you’re going through what you’re going through.
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Thoughts and prayers are with you, your Mum and Veronica. You have to stay strong for them.
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I had been wondering what your Mum was up to but assumed she was off at the beach taking vacation or something fun. THEN I hear the reality and it stinks. Sorry you guys are going through it.
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I know how you feel. SWMBO has Ehlers Danlos and I can’t do anything but give her massages the help her feel better. I can’t cure her. I so desperately wish I could.
That said, there is something you CAN do to help Von. E.D.S. is an affliction that has to do with connective tissue. The reason it gets worse over time is because things stretch and don’t ‘snap back’, like they do in normal people. She encourage her to limit the range of motion she undertakes with her joints. Don’t let her stretch things out. It will help. A little.
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(((hugs)))
We loves ya here in Melbourne 😉
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big hugs to all
thinking of you and all..
take care
Hugs Kim,
There’s not alot I can say but I think of you often and I am sorry that your family has this constant stress in your lives.
Oh for that magic wand, right about now.
I can understand that feeling of helplessness, with your Mum and especially with Veronica. After all those years of knowing there was something and finally getting that validation. It’s kind of like a grieving process. All that pain and worry that you’ve pushed to the back of your mind, all the second guessing of yourself that you must have gone through when the docors were telling you there was nothing. To have all that and then one doctor finally pays attention. It’s good and it’s bad.
Hugs, biggest hugs.
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Um, what’s a vorpal sword?
I’m sorry you can’t fix anyone. I wish I could but sadly I can’t do it for you either. I really would if I could.
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Life is fragile. Handle with care. Your mum and Veronica are lucky to have a wonderful daughter and mother to be there for them.
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