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Thought of all you you today

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As you know, this has been a hard few weeks. I'm struggling with the thoughts about what I'm going to have to stop/let go of in order to get healthier and out of this hole...and what I'll have to hang on to in order to hold onto what little good health I've got. I know many of you have stood (sat) :P in this spot before--so I though first to share it with you because those without chronic illness just "don't get it."

I need to talk to my boss about making sure that what happened to me at work the past few months never happens again. In addition to my steriod aftermath, I'm now certain that the physical nature of the past few months is what dropped me like a stone. I can't ever take on a work assignment like this again if I want to continue working--I can't physically or mentally give this much to work again--ever.

I vented here a few times recently--but now I'm at a point (good, I think) where I'm trying to figure out what to DO. I need to change some, jetison some, add some to make my life livable. I know that many of you comment on how much I've been able to do despite illness--but I don't often share what I've given up to do those things. I'm rambling, sorry, but I just feel like I'm at a crossroad where I have to come to grips with losing another part of what I used to define as "me". I wore my bracelet to work and school today to keep more positive thoughts...and a reality check...right in front of me all day long. Not sure why it helps, but it does.

I have a whole list of things i need to do, which I'm writing here so that I have to do them at some point soon.

Medical Stuff

Make upper endoscopy/sigmoid appt

Make appt for brain mri

Make appt for an EEG

Reschedule my Neuro appointment and ask him about med changes

Make gyn follow up appt (ugh)

Make appt for pain management follow up for migraines and for my back stuff

Make annual allergist appt

General Health things

Get back to my recumbant bike starting next week (we're moving it to our newly finished basement, right in front of the tv and next to my Pilates.

Eat better--while I'm on weight watchers, I'm not eating enough of a balanced diet

Plan for more sleep (this is the hardest one b/c it means giving up doing some of my things like hanging out here on the forum)

Despite my love of wine, have less of it as it makes matters worse

Mental Health things

get back to my garden

make some jewelry

read uplifting stuff...watch uplifting stuff

smile at my buddha and breath for a while

Thanks for putting up with my long and rambly notes tonight. I'm trying very hard to find my way back to the rest of the world (not that I don't love the rest of my buds down here).


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Nina, really sorry you are having to be down here with us. I used to always say, I just can't do this anymore, like for years...and then one day I really couldn't. I didn't renew my nursing license last year and it was one of the hardest things I've ever done, or not done. But we just reach a point where we do have to just sit or lie down and look at what the important things are.

I often think of the things I always took for granted, like driving, man that's a hard one. Depending on others when it's always been the other way around is not fun, but at some level it does become neccessary.

I think personally that one of the reasons this is so hard, besides all the labeling we get, is that we are all still pretty young. You think of all these health issues showing up when we are 80, not half that. I think I should have at least 15 good years of being able to work hard left in me. And it's just not. And so many people just don't get it. Having to make excuses for your health is miserable.

I ended up with 6 different jobs the last year I worked. I just couldn't figure out what was wrong with me, why couldn't I do these jobs, I'd always done, for 30 years. My ablation ended everything with a blast. One day I worked, then I never worked again.

I hope you can hang on long enough to make these important decisions and be okay with them. This place is so safe, because you are right. We all DO know what you are feeling and going through.

Just know how much we care about you and don't want you down that hole. Give yourself a break and lots of love and know you've got lots of support and love here! morgan

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Hi Nina,

I've been thinking about you a lot lately, because of your problems and now you've come to the point I was thinking about: adjusting your life to your illness. And I know that it will take you a while because that's the hardest part. But if you want to live a livable life you just need to! In the 2 years that are behind me I got myself a wheelchair, electric cart and elevator. We're thinking about moving to a single storey house (have to talk to Tearose about that, I think she's the one who did that also) and planned the tasks in and around the house, involving the children in that more (which was very hard for me to do because they already have a lot of tasks). Also we let our housekeeper come twice a week now (which is soooo expensive). It's not that you need all of the "equipment" (I hope), but what i mean is you have to find out what you can handle and (more important) what you CAN'T handle. I know how difficult that is as I always tell my doctor: I don't want a bit, I just want everything!!!! Getting my equipment cost me a lot of tears but brought me happiness as well and that's what it's all about!!! So, I'm sending you another rose and wish you thinkfull days (is that a word??? :P ),


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Guest tearose

Hugs to you Nina!

I really get what you are saying...heck, I have a Masters Degree, have traveled to most countries in the world and sit here now drinking coffee and counting energy points!

I studied the master plan of Nairobi, Kenya(the pre-pots me) and now I'm struggling at teaching myself how to write with my opposite hand to try and "wake up" new parts of my brain!

I found that I had to learn to respect myself first, with all the dysautonomic challenges, and then others would respect me! I had to seriously focus on selecting words that really make a difference! Like saying I am "changing my expectations" NOT "lowering my expectations". I love turtles so I had to learn to embrace my "inner turtle"! I guess for you, you are not going to hang up the yellow leotard and put away the cape, just decide when you can walk (or scurry) instead of fly and save up for those important moments when you just gotta fly! :P

We all are in such a rush...I had to learn how to slow down and feel okay with saying "NO" to things too. I even learned how to say "I'm saying no now, but please ask me again in the future because maybe I can say yes then!

Maybe you aren't losing part of yourself, just redefining how to express that part of you. Be gentle with yourself...only you are putting pressure on yourself...create a new way of finding that balance between the "to do list" and the "working Nina" and the "at home Nina".

Oh, yes, the move to a no-step-ranch home (all living on one floor and handicap bathroom...and a chair-lift to the basement level) has been a major energy saver in my life!! Waited two years to find it, but am glad we are here.

I'm thinking of you and sending you good thoughts and support, tearose

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Guest Julia59


I just wanted to let you know that I feel a sense of balance when I read your posts. You have a good attitude, and I have a bad one---but it's getting better.

Your posts are uplifting, and help me to get my thoughts into perspective.

I can be quite the big mouth/foot in my mouth type of person with my attitude problems.

I'm glad you are feeling more organized with your thoughts, and you have a nice list put together to help you stay that way. You have a lot on you plate for someone dealing with chronic health issues. You are a very well put together person, and your inner self has warned you to slow down a bit.

All these Doctors appointments can be overwhelming, not to mention all the testing/bloodwork-ect. This alone can mess with a person mind---I know it does mine.

It looks like you have things handled----the main thing is that you listened to your body. Now you have a new perspective, and you can juggle things around a bit to give yourself the gift of life-----(living your life.)

You can never go wrong getting your education, and i'm glad you hung in there on that one. I wish to someday continue mine.

I had to learn this lesson the hard way. I still struggle to this day to live by this lesson.

Wishing you all the best.

Julie :0)

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I haven't been able to post much lately but I've been reading all the challenges you've been overcoming and have been very concerned for you. I'm glad to see you have a list of goals. If you take it slow you will be able to adjust your life to fit your needs, just don't adjust your spirit. You bring people alot of courage through the way you handle your challenges and your life.


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MM, sorry to hear that u r still having trouble. DOn't want you to join us in the "hole", maybe you can start to set some limits for yourself(easier said than done-I know) but you are such an active person-it all may just be catching up with you. You are very admired here for all you can do but at the same time, we would admire you just the same if you were able to let some things go or just modify(maybe that is a better word). I only wish I had half of the determination that you have. :P

Good luck and let us know how things are going. Just reading your list made me tired :)



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Hi everyone, I added a reply a few hours ago, but lost it somehow... and then I fell asleep.

that's just the way it goes--I've been feeling bad though because I've not been able to return emails or post much on most days.

Yeah, that to-do-list overwhelms me too. I did chip away at it today. Scheduled my gyn, pain mgt, & mri. I almost came unglued while I was on hold with pain management; I called them with at least a week's worth of meds remaining, but the first appointment they had was 3 weeks away. He's always been less than a week's wait in the past...anyway, I really only need a refill, but they have a new policy that you must come in for an appointment. I was crying while I was waiting on hold. When the nurse came back on she offered me the FIRST appointment on Monday the 9th :lol: She doubled booked him at that time, but she knows I'm usually a quick appointment. Not much changes with my status and he knows me well now--so just a few routine questions and then I can have my scripts.

Seriously, I think I'd feel so much better if I didn't have SO MANY DOCTORS :lol: okay, that wasn't serious. Must be heading out of the hole if my sense of humor is starting to return.

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