Wednesday, November 23, 2011


It's been a rough week. Very, very rough.

I woke up on Friday with a sore throat, feeling slightly congested. I was irritated. A cold? The flu? Why? And why now? My BFF, the Archaeogoddess, is here, in our tiny hometown. For the first time in four years, we are on the same continent, just minutes from each other, and I have big plans to spend a lot of time with her. As much as I can manage. I want to grasp every moment I possibly can. I want to chat with her husband. And I desperately want to meet her baby daughter. It is agony to have your best friend have her first baby when she is so far away. So, I resolved...I just would not get sick. That's all there was to it.

Bring on the tea, and the rest. Think positive.

Useless. Of course.

Saturday I felt worse and by Sunday, I knew it was Strep at best, though I began to suspect it might be worse. I knew I had a doctor's appointment on Tuesday, so I thought I'd suck it up and hold out until then. One of the big disadvantages of small town life is the lack of an Urgent Care facility. Basically, if you can't get an appointment with a doctor if you need one quickly, your only other choice is the Emergency Room. I've been told time and again not to wait too long before making this choice. Doing so puts me in a bad place. My pain levels grow, my exhaustion deepens, and my immune system, always wrong, always misfiring, will completely go haywire.

Monday was horrible. I had a fever. I also had an afternoon planned with the Archaeogoddess her husband and Spawn. But, besides the risk to the sixth month old baby, The Archaeogoddess' brother has just recently had chemo, and though he is now cancer free, his immune system isn't in great shape. I can't justify the risk of that exposure, so I cancelled. And then I hung up the phone and cried. I sobbed and hurt so much. I hadn't felt like that since...well....since the god awful break up with the EG. Maybe not even then. I just felt so angry and hopeless, and so completely and utterly sad.

Being chronically sick has robbed me of so much, and now it's stealing the few precious hours I have to be in the same room with the person I love most in the world, after the Midget. I got home that day from having to accompany my cousin and her daughter to the dentist (long, long story) and took a short rest and woke up and realized that waiting just the 18 short hours to the following morning's appointment was a bad idea. My chest started hurting and I was coughing up green mucus. I could not wait.

At the ER, I was lectured about waiting and diagnosed with bronchitis and a sinus infection. I was given high dose antibiotics, a pain shot and a higher script for prednisone for the week. I went home dejectedly, and a little giddy from the pain shot, and called the Archaeogoddess and told her I'd have to put off the visit, and what with Thanksgiving and all, I might not be able to see her until Saturday.

This morning's doctor's appointment was for my disability paperwork. My doctor wanted to see me before he filled it out, to really get a clear idea of my physical state as it applies to tasks... It was entertaining to hear him complain about the hoops that someone who is sick has to jump through to get the help they need. And then he said something to me that he'd never said before. He looked me in the face and said "In my opinion, you have a profound level of disability."

Profound: a : characterized by intensity of feeling or quality
b : all encompassing : complete <profound sleep> <profound deafness>

I know this. I know that I am unable to do more than the simplest tasks without exhaustion, pain and weakness. Grocery shopping requires two days of rest beforehand, and at least three days of recovery afterwards. Some days, simply showering takes all the energy I have. This has been my reality for quite some time now. And yet...hearing it from a doctor in that definite, declarative fashion was like a kick in the stomach. It literally took my breath away. This is real. I am disabled. A vindication of sorts after years of begging doctors to just figure out what's wrong. And a deep sense of loss.

When I remember the person I was before all this hurts. I miss my old life, my old self, in a physically painful manner. I miss my friends, I miss having a social life. I miss hiking and camping. I miss working, and feeling like I did something that mattered. I miss being able to clean my house from top to bottom in one day. This is what being sick has taken from me.

I know, though, that I am blessed in so many ways. I have so many amazing people in my life who love me. I have my beautiful, fantastic daughter. I am not homeless. I can see and hear, and walk (as long as it's not too far, doesn't have anything to do with stairs and hills and I can rest when I'm done) and talk. It could be worse. But, that knowledge doesn't really make it easier to be sick.

Thanksgiving is my favorite holiday. I love the food, the family. I love the sense of tradition in our family on that day, being together, laughing and enjoying each other's company without the stress of Christmas and all it's commercial burdens. I usually cook the vast majority of the meal. This year, however, I am making only stuffing and rolls. I won't be up early in the morning to get the turkey in the oven. I won't be cutting and peeling sweet potatoes or mashing regular spuds. And I'm pissed because I love doing those things, but I just can't. If I want to have a fighting chance at being able to have a party for the Archaeogoddess on Saturday, I have to rest and conserve energy. I have to accept the reality of sitting on the couch with my heating pad while others cook.

I am so sad. I feel hollowed out and bereft.

Tomorrow, I'll get up, get dressed and smile. I'll go to my sister's house and enjoy a Thanksgiving dinner with her and my niece and my daughter. I'll remind myself of all that I have to be thankful for, and look forward to seeing my BFF this weekend. I'll breathe in and out. But, tonight, I feel profoundly alone, profoundly sad, and profoundly bereft.


Archaeogoddess said...

I wants to give you a big 'ol hug! And I will when I see you because I will see you, even if it does mean exposing us to all kinds of nasty germies.

I know it sucks to get the "profound disabled" label, but dammit, I'm just glad they aren't still telling you that it's all in your head. Because I was just sick and tired of them telling you that you were crazy. I mean, you may be crazy, but not that kind of crazy!

So take your medicine and direct Thanksgiving from a comfy place and I will see you on Saturday if not before.

LouAnn said...

I wish I was thee with you , Dear One. Or at least able to help you or hug you or whatever it is you need. It must be very very hard for you to have finally been told you are "profoundly disabled" even tho you have "known" for years . now, finally, Finally, FINALLY you will be able to get the help you have needed for so very long! I know this may not seem significant to you at this very moment, but you can now get the help you need so you CAN be able to relax and store up your spoons as someone else can help with the laundry, cleaning, etc. Accept your new role with grace my love and know you are that very special person that can adapt and still be so very worthwhile to the rest oYou are an amazing mother, and you have the smarts and skills that you can pass on to the Midget - your legacy of being proud, and pushing thru all the adversity you have pushed thru in your lifetime. The Archaegogoddess will always be there for you, whether you are sick or not. I know the two of you cannot be in the same country and not spend time with each other. I hope your happiness only grows even tho you are wracked with pain. I hope this all makes sense to you Laura, I tend to go on and on when I am upset. I love you my daughter - I hope you know that