No Day But Today

New Hope Beyond

A long time ago I made a decision to use the word “love” a little more freely.  That decision came with another which was to not let concerns of what others would think of that get in the way of expressing that love.  For example, if it was a female friend then she would get that the “love” was within the context of loving a fellow believer in Jesus Christ, love like a sister that I never had, and possibly a bond that simply comes with walking through many years of life’s ups and downs together.  The transition would be instant, from “Take Care” at the end of an email to “Love, Julie” if we had just endured a crisis together.  When one heart is hurting, there is no other word that will suffice.  Love covers things well.

Born again believers know the author of love as God himself.  The…

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Puff And Circumstance

Today is my first day back to work after my dream vacation (first one in 16 years) to Disneyland (will do a Disneyland post soon). I had decided I was going to be really strict and careful with my diet and packed a ton of food, like organic chicken and cooked broccoli and yams. The first couple days I did pretty well, but then you know….Disneyland.

First, we did not get back to the hotel for meals like I thought we would and just ended up being in the park a lot and even the snack food I did bring was not entirely practical, and one can’t survive in 90+ degree weather on dried fruit, zucchini chips and baby food.

I ended up having my first Jamba juice, several times….. Because of messed up schedule and lack of sleep I ended up having coffee a few times. I must admit ice cream happened a couple times and for a big cheat I had a Monte Cristo in Cafe Orleans for my sister’s birthday dinner. On our last day I also had some food at In and Out Burger because I had never been there before.

It was SO hard to make food decisions because I was torn between wanting to be strict and good to my body and just wanting to let go a little and enjoy vacation. All in all after tallying 5 1/2 days I did about 70% good with diet.

Why make this post all about food do you ask? Well, because I think my body’s reaction right now has a lot to do with autoimmune reaction to food and not much to do with days of walking and fatigue.

Ouch:

foot2foot

The Recipient Of The “No Reply”

Just some musings for today and food for thought.

It’s the feeling you get staring at your IM messenger and seeing that your message has been read by the recipient, but no reply.
It is the feeling of looking at your phone and seeing that you sent that text…..days ago, but no reply.
It is checking your e-mail inbox and wondering if that e-mail you sent per chance went into their spam folder, or into a digital vacuum, or if (gasp) maybe they are injured on the side of the road having flipped their car because they were illegally trying to answer your e-mail while driving and now they are in desperate need of medical care with their phone just out of reach of their fractured fingers….But the result is the same; no reply.

Yes communication has changed and we now live in a digital age. This is a wondrous thing in that we can communicate with each other like never before, anytime, anywhere. For some this is AMAZING because we see too little of people in person and we are hungry for fellowship with friends. For some I know this can also be an annoyance in that we become slaves to our devices. No matter how you feel about digital communication I want to set that aside for a moment and have you consider the thoughts and feelings of the recipient of the “no reply” (please note I am not talking about those that get back to you hours or a day or two later, I know we are busy).

The things that the No Replyee might be thinking or feeling

1. I don’t matter to you.
2. I annoy you
3. You don’t like me
4. I am very low on the list of people in your life
5. I think you are a rude person who is giving me the equivalent of the silent treatment
6. I have offended you
7. You just forgot
8. I am a stupid/annoying/unimportant/obnoxious/ugly/wasteofspace person and no wonder people ignore me and I should just shut up and not contact people because it puts them in the awkward position of just “try and ignore her and maybe she’ll go away”.

    So, for those who never answer I really do spend a lot of time pondering what is going on in your head; when you see a message in whatever form it came in (especially if it is personally addressed to you) and decide to never reply. No really! I am curious because with dead air I can only guess at what is going on with you, and I’m sorry but with my history of where the enemy likes to attack me I am usually going to default to #8. So this is me really and honestly asking the question to those of you on Facebook who I can see have read my IM…..months ago and never replied, and to those who have received texts and never replied, let me know! I have a lot of grace and I am ALWAYS totally cool with “hey sorry, I don’t have time” or if it’s a question just a quick “no”. You aren’t going to hurt my feelings, but please explain the dead air which for the No Replyee is the equivalent of standing in front of you talking and you just staring back not saying a word. It would seem rude right?

Also please have grace for us, the digital communicators. Especially the vast community of us who have endured isolation due to illness and or distance and being able to communicate with our friends digitally is a beam of light in our world.

So. Am I sending this out into the void? Or by chance will a few reply……

beingignored

Down Again

i am in th middle of another set back and feel horrible. What is frustrating is that I just don’t understand why. At this point driving 8 hours over two days, attending a concert and getting a little dehydrated should not put me on the floor. 

The last couple days I have felt so fatigued and weak I can barely function, plus my inflammation/water retention is way up, my brain is fuzzy and my emotions feel out of whack.

I really don’t get it. I did eat some different food being out of town, but nothing “bad”. Alright yes I did have some bacon from Whole Foods that turned out to have some celery powder in it, and I did have a little chocolate. But is my body so highly sensitive that I end up feeling like I’ve had a 6 month set back? This is ridiculous and needs to stop. 

I don’t even know what to say. 

Photo I took Saturday  

Little Lost Girl

Something I wrote about 2 years ago when I started this blog….

Little Lost Girl
The Other Toll Of An Auto-Immune Disease

At some point I stopped looking in the mirror; of course not quite literally because I need to do my hair and makeup in the morning, but a long time ago I stopped “seeing”. So it was a bit of a shock when one day I actually did see, and I didn’t recognize myself. I look old, I look sick, I look puffy, I look fat, I look frumpy. Gone is the girl I see in photos from several years ago, and not just physically, because that girl had things she enjoyed doing… people she wanted to spend time with…she had an inner passion for the things she loved, and had so many hopes and dreams….

I look in my closet and there are the clothes that I no longer wear, the digital camera that I have never used, the containers of craft materials that I no longer have an interest in….because life used to be not only about today, but about tomorrow too. Now I struggle to get through just one day at a time, just surviving, there is no energy for anything else, and it is more than physical, my brain is tired too. I used to love crosswords, but sometimes it is too hard to recall the words I know that I know, or to spell words that I know are locked somewhere in my toxic mind.  People are too hard to be around, not because I don’t like them, but talking and engaging takes mental energy, and that is easily used up doing my job everyday (thank God He has given me the strength. So when I am quiet and don’t feel like talking, I am more than likely not in a bad mood, and it has nothing to do with you, I am just shut down.

I miss my personality; it is actually hard to recall who I am. I know I used to enjoy so many things, but I am not sure what they all were. I think that I will need to rediscover myself, and see what emerges when the chrysalis of illness falls away.

So, I am writing this not to whine nor for pity, but just to share what chronic illness can do to the core of who you are as a human being. My sister and I talk and share all the time about what we are going through, and how what we are feeling affects us socially and mentally. How each of us wants to tell everyone we see from our friends to people in the grocery store “You don’t understand, this isn’t me, I’m really someone else…”
But thankfully there seems to be hope. Treatment has been rough, and the different medications aren’t fun, but I believe that finally after possibly two decades of having this garbage in my body and not understanding what was wrong with me, there are answers. I have been told by my two doctors and even by friends and acquaintances that next year everything will be different. I want to hope so badly that this will be true, and if it is, I might emerge again, but will I be who I was or a little different? We shall see…

Explaining to the lay person what chronic Lyme feels like

In the midst of the worst

Liberation through Lyme

I have no doubt that my husband loves me but I know that it frustrates him when I try to explain that he will never be able to understand what I’m experiencing. After a great talk today I think I may have come up with a way that can help him at least wrap his brain around it. I thought I would share it with you all too.

Imagine the worst case of Mono that lasts for 3 months, leaving you unable to lift your head off of the bed or take care of your basic personal hygiene unassisted. Now add in excruciating joint pain, migraines, and constant nausea. On top of that your cognition is effected: you have lost your short term memory and your working memory is hampered (you can no longer manage complex reasoning and are unable to find the word your are looking for). You may…

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