To sleep; perchance to dream...

I'm not sleeping much these days. Well, at least not on nights when I'm not on Demerol...ha. I've been recovering from the disappointment of that doctor's visit, so has M. It's hard on both of us and thankfully we end up feeling more on the same team for it instead of against each other!!! But, even in disappointment God is here, taking care of me.

I've been corresponding with a woman I have never met who went to Kansas City for treatment last year. Her entire life she battled her health and she understands the frustration of chronic illness like only another sick person can! She reached out to me from the goodness of her heart, to tell me that I should be hopeful because the doctor in KC helped her when so many others had treated her as the nephrologist treated me the other day. The "best of the best" at local "TOP HOSPITAL" have disappointed her repeatedly, as they have me. They misdiagnosed her time after time, but never hesitated to prescribe yet another medication, many of which actually worked against her. I've been handed prescriptions and told I "finally had a diagnosis" before too. However, after following strict treatment regimens with no results I've realized their "diagnoses" are really just symptoms for something larger that is lurking within my body. I think the picture of my red blood cell infiltrated with that black bacteria shows me that I'm right.

So, thank you Lord, for putting people in my path who HAVE been where I am and who HAVE come through the other side better and healthier. She's not "cured", she's still battling so pray for her too, but she is making great progress after a year of treatment. I see that as a HUGE HOPE! This road doesn't end when I reach KC, it will actually just be the beginning. But, without hope of finding a healthier me at the end of all this, I know that I would be incapable of the positive feelings that do surface every now and again!

I never want to post "downer messages" but at the same time, I want and desperately NEED to be honest. This woman and I both related to each other about how we've "lost friends" through our illnesses. I've heard many stories of people who are "chronically ill" saying things like, "It shows you who your true friends are". Many people have written to me in emails or messages saying how "strong" or "positive" I am. I do appreciate that, but I also have to explain that it takes a lot of WORK! I have to work and let God work through me to keep my spirits uplifted and sometimes no matter how hard I try it seems to not be enough. The down feelings surface anyway. That's when it takes the work of OTHER PEOPLE because I'm not strong enough to keep on smiling through everything. I wish I could be that person, but I am not.

Even if I was at some time in my past, this disease I'm fighting has taken a toll on my central nervous system and on my entire brain for that matter. So, I doubt any prior strength or upbeat moods would have survived through all this. I have been disappointed by some people who seem to have disappeared from my life, but I do understand it too. WHY? Because it isn't easy to be friends with someone going through something like this. It's hard for me to understand feeling this bad & I'm the one experiencing it! So, I know it has to be hard for someone else to understand. Much less to know what to say or do for someone like me. Not to mention, when someone is cooped up in bed all the time you don't see them anymore and it becomes easier to forget them. I really think "out of sight, out of mind" is much more common than "absence makes the heart grow fonder". So, I just want to say that whether it's me or someone else who is going through an illness, or just a really rough time in their lives like a divorce, losing a job, a sick child...whatever IT is there's only one thing they want or need & that's SUPPORT. Whether it comes in the form of an easy little "How are you today?" email, or an actual card in the mail, or just a text message that says, "Thinking about you"....it really is the little things that matter the most! It matters to feel like people DO CARE! You just want to know that you're not forgotten. You want to know you're still important to someone out there in that world that keeps on going on without you.

I'm not saying this to ask that everyone stop what they're doing and do something for me, so please don't take it that way. It just hit me when I was discussing with a total stranger the isolation that comes from a prolonged illness that maybe people needed to know what it is that they CAN do. So, I guess I'm saying it for all the people who are going through really difficult things who WON'T SAY IT! Because I don't know many people whose lives are always sunshine & roses, do you??? And because without emphasizing ALL of that, I couldn't make an even bigger point. The bigger point is when a complete stranger reaches out to comfort me and to provide me with that ever elusive hope...well, I KNOW and I SEE that is nothing short of God working through them. And I am eternally grateful for their show of support. So, maybe when you read this you will let God work through YOU to reach out to someone you know, or maybe even a total stranger who just might need an encouraging word. It's amazing what can happen when we let God steer our lives! We can be walking, talking miracles to other people here on earth and I honestly don't think there's a better feeling than that!