Every other week I am in my counselor’s office, and there seems to be something new that brings me to tears, which drives me crazy. I can’t figure out why I am crying so much. I mean yeah, I have experienced loss on a major scale in the last nine months – my sister, my friend, my uncle, moving states, losing my job, losing all of my doctors, losing my option for more surgeries – but I keep thinking that I should be adjusted by now. But reading this post by my fellow blogger reminds me that I keep experiencing loss and that I still have a sense of instability. Since my U of MN doctors insist that I don’t have Lyme, I have to go through the long process of getting set up through the NIH rare diseases unit and make arrangements through Vanderbilt University to be studied there, as they have locations designated throughout the country for patients to be screened. In the meantime, I have to continue with my treatments with my naturopath, even though I have NO IDEA if it’s the right thing to do.
In addition, I’ve been given the option of getting a TAP block in my abdomen with the hope that it will relieve some of the nerve pain that I’m having from being allergic to the drainage catheter from the shunt. The doc is going to numb nerves on both sides of my abdomen leading to my lower belly. The kicker? I have no idea if it’s going to affect my sexual functionality. And I’ve got a brand new boyfriend. And I really like said new boyfriend and I want to jump him every time I see him. And I don’t think it will be fair to lose what little functionality I do have, because who knows how much longer these good years of responsiveness are going to last? It’s asking a lot of a new boyfriend to possibly give up intimacy for an unknown period of time (forever???); I mean, I call him The Saint Paul, but Jesus H…I don’t know, is there something that is a step above sainthood? If I lose my ability to orgasm, that’s gonna take a LOT of mourning. Maybe some booze and mood stabilizers. I’m already stressed out about possibly taking out the shunt permanently because it’s clogged and I’m allergic to all of the shunts, which means that I may be stuck laying down forever and can’t be up for even an hour.
In closing: Send kittens and puppies and rainbows.
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When people think of grief they often think of death, they don’t think about grieving over other significant losses. Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.
The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance. Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next. This is no longer thought to be true. It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.
The
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The Sick and the Dating 
I came across Wendy’s post too, & thought of you as I was reading it & all that you’ve had to adjust to & deal with. As someone who has had significant losses, some to the degree of affecting her feeling like a woman, I get it. I can’t say anything that will make it better or take it away but it certainly resonates and I can sit & listen & offer a hand to squeeze through it. That said too, I’m really angry for you because I know how much you deal with on a daily basis & how many things you do right to push back in an attempt to preserve your independence and autonomy. As your friend it hurts because I know it sucks for you, & it also sucks for me to just have to sit here on the sidelines & just be, even if that’s all I can do. Here’s hoping for some answers.
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Thank you, friend. I appreciate all that you do for me and for others. I feel very privileged to have you as my cheerleader because you know what it’s like be be in the eye of the shit storm. ❤
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I wish I had some words of comfort to send to you. I’m just sorry you have to make these scary decisions when there is so much unknown. It’s really not fair. I just want you to know that you’re not alone. Sending you lots of hugs (and kittens and puppies and rainbows) ❤
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I also forgot to say that there really is no proper process of grieving. There’s nothing wrong with needing to cry every week. There’s nothing wrong with feeling as though you haven’t adjusted to your new circumstances. I think grief surrounding chronic illness is a lifelong process. It fluctuates, and sometimes it may completely overwhelm you, but that’s okay. I mean, we are dealing with some pretty rough things. I think that we need to grieve in order to survive. Hugs x
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Thank you for your words of kindness and encouragement! My logical side agrees with you wholeheartedly; my irrational side is being a jerk and refusing to listen. I wish you well in your adventures too. ❤
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I’m so glad you found my post helpful.
and I’m so glad you have a boyfriend, who sounds like a dream.
Paul wrote the most lovely comment. I’m impressed.
I have sexual problems due to health stuff, we work through it.
is you ever need to talk. I can give some good insight.
I have very painful orgasms and even when I get excited it will hurt.
but that doesn’t stop me being attracted to my husband or him feeling that way about me. but as Paul said, we are more than that.
Knowing he still finds me the hottest thing on earth, and I still want to jump his bones, makes it easier. sounds like it make it harder, but …. well we could talk about it if the time comes.
If you have this procedure done, can it be reversed?
I’m sorry about your allergy to everything a shunt is made of.
sucks. You can’t spend your life lying down.
Thinking about you.
and thanks for sharing
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Thank you so much for your comments! Paul is the best. I actually had problems for 18 years prior to my hysterectomy and so I was thrilled to not have to deal with that crap anymore, but that has been replaced with crazy pain from my body rejecting the shunt (especially where it drains in my abdomen) and the possibility of losing all sensation past my belly button is a major bummer. Everything is just a big question mark including the reversal – though it seems like the block is expected to be temporary in terms of months rather than years. I appreciate your words of wisdom and your willingness to raise your hand and say “Me too!” Wishing you all good things, sister in the spirit!
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Wishing you all good things my dear. I’m here if you ever need to talk about this, something I haven’t talked about much in a long while. But it’s still there, worse. Right now I’d welcome the lack of sensation there.
Would that interfere with urinary and bowel issues. If you have loss of sensation? Sorry I’m so curious. I’m lucky the meds are working now so my high pressure is pretty normal. They talked about a shunt for a bit, it’s scary. Best to you warrior princess.
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