Thursday, July 31, 2014

Food For Thought: Much Needed Conversations, Part I

Once July of each year rolls around, I like to think back on significant things that happened during the previous 6 months.  And most of my memorable times involve conversations. And I have a lot of them, to the point where I don't really care for idle conversations anymore. I have come to expect conversations that increase me in some way. And I think that's a good thing.

Right now, I am thinking about my health concerns. No, nothing dire is wrong, but with the lupus, I tend to have some flare-ups here and there, and some of it is cognitive. I don't like the "suprise" nature of that. And when it happens, I can't sit and be still. I still have to keep going. I have to work, do my chores, etc. And that can get hard.

And it can be very lonely?

Why do I say that? Because I can look perfectly fine, but feel pretty horrible. And I rarely share that with anyone. Because people don't understand. They assume I am just being mean or something. No I am not. I feel bad. And I just want to be quiet. That can be lonely. I need someone to talk to about things. Someone who understands.

So when earlier this year I had a new symptom, it bothered me. It seems that I don't do well with physical stresses like changes in my routine. I don't know how to explain it, but I can't say I remember feeling like that before. It started when our roof at work was being replaced, and I had to shift my schedule around and get to work earlier. And then it continued with other stark changes in my routine.

I thought "This is stupid. Why am I feeling bad?"  That was the only change that I could think of.

The best thing I can do in these situations is power through it. And pray about it. Pray for some answers or insight.

And that's what happened.

Maybe a year or so ago, I met a woman who had my exact same symptom patterns. We met last year when I was getting iron infusions. I never sat next to her in the chemotherapy, as the lounge chair next to hers or mines were always occupied, but we would have some good conversations when either one of us was coming or going. I found her to be amazing. And she's a good resource since she's exactly 20 years older than me. I tend to question her hard when I see her.

So we happen to have the same doctor, and she always goes in on a Tuesday, and I on a Monday. So there was no way we could really catch up with each other. But I ran into her on my last visit. She was about to go out of town to spend a few weeks with her mother, and she needed to come in on a Monday. And she and I both understand if we are about to leave town, get that doctor's appointment in.  We better get ALL our meds in order. Nothing like being caught out of town without one of your meds.

So when I saw her, my eyes lit up. And it meant much to me because I'd been praying about everything that morning, and trying to write some things down to talk to my doctor about. It was a good thing to run into her.

She does give good insight on medications.

"I took this one med called [something that starts with an M], and it threw me into kidney failure," she said.

"Whoa," I said, as I remembered to not take this med I couldn't pronounce, and as I made a mental note to not take anything that starts with an "M".

I talked to her about the problems coming from changes in my schedule. I'd never experienced that before, and if I did, it wasn't as drastic as it was this spring. That was enough to concern me.  I didn't know if I was imagining things or not.

She said that I wasn't. She doesn't have many problems with physical stress, but she has had problems moreso with emotional stress. I told her I don't have too much of that, as I try not to be dramatic and I stay out of the way of dramatic people and situations as best I can. It's this coping with physical change that has thrown me for a loop. She gave some good insight and tips on that.

We had a chance to talk about her life. She was the creative type, and had directed plays and liked to write. She even tried out for a soap opera. She ended up having to retire because of complications from the illness. She has a son who is a scientist, and thought since I am one also, that that may be part of my issue. Scientific types tend not to be the best communicators. I told her that I wasn't, and I have a tendency to be aloof. That was good to talk about.

She found it interesting that I still work. I told her that I was still strong and that I could. I don't have a physically demanding job, and I have found it HIGHLY beneficial to stay away from folks on the job who have a tendency to exasperate me. I have to do better about taking off when I don't feel well, but I chooset to save up my sick leave just in case I fall sick and absolutely cannot work for an extended period of time. So we talked much about that.

I really appreciated this talk. It was super brief, at less than half hour, but the insight I gained into my own self was much needed. And I understood my challenges and some of the changes I need to make.

And I love when I get a quick turnaround on my prayers. I was praying for some answers to my questions concerning it all, and in less than 2 hours, I had my answers and a plan of action.

So that is a more personal food for thought, just for me. Life unfolds for me in good conversations, and this was definitely a much needed one.


  1. I can look perfectly fine, but feel pretty horrible. And I rarely share that with anyone. Because people don't understand. They assume I am just being mean or something. No I am not. I feel bad. And I just want to be quiet. That can be lonely. I need someone to talk to about things ---> This right hear I understand I just wish more people would. I get tired of hearing people say oh well you are just standoffish or lazy.

    1. When I feel bad, I get quiet and I know people think I am mean. I don't care though.

    2. I have heard all of this: mean, evil, standoffish, stuck up, a snob...I say oh well to all of that now.

  2. Did you get that lady's number? It seems like she would be a perfect person to include in your circle to have more of these conversations.

    1. I agree with this 100%. Definitely a good resource to have.

  3. It is always a blessing when you can find someone who can really relate to what is going on in our lives. It's rare. God knows just what we need exactly when we need it.

  4. Anonymous11:58:00 AM

    Like the old negro spiritual says ..."He is an ON TIME God!"


  5. She is a blessing for you and we all need someone who truly understands.

  6. I too have lupus and it can be challenging. My biggest challenge is the summer as I am allergic to the sun. I totally relate to looking good on the outside (with the help of Dermablend make-up) and feel crappy on the inside. My hair has fallen out, my face is severely scarred, and my body has rashes that are ugly. I mostly stay at home to protect myself from the sun and when I go outside, I lather up with sunscreen, where a hat and long sleeves. People think I am anti-social and I'm not. It can be lonely since I cannot participate in simple outdoor activities like I used too. I have been reading your blog for some time now. I simply love it. It makes me laugh, smile and gives me inspiration. You are not alone and neither am I.

  7. I have a good friend who has lupus. She has had family and doctors tell her it must be all in her head. She had had to learn to walk twice.

  8. I think I went through my whole first year of teaching with people thinking that I was mean and standoffish because I was so quiet and to myself. I deal with depression and anxiety so when I am stressed it feels like I am on a slippery slope and could easily slip into a depressed state or having anxiety issues. When I start to feel like this I get really quiet. It seems to bother other people but I am just trying to maintain.


Slap the *crickets* out the way, kindly step up to the mike, and SAY something!!