Monday, March 23, 2015

The nature of an invisible and chronic illness...

I make no secrets that I have chronic illnesses. I think it's important for me to be up front with all of you about that.
I have lived with Crohn's disease for 16 years. More recently I was also diagnosed with Lupus and Fibromyalgia. Most of the time I manage. I never feel "well". But I'm sort of used to that.
And that's kind of the problem. I'm used to it. How do you when you are developing potentially life threatening complications when you always feel like crap? In my case, because I have had SO many complications, it gets harder to tell. My body is wired for pain all wrong. Pain I should feel for serious issues... well, my body is used to that pain, and it never feels as bad as it did the time before. The first couple of times I had an obstruction (with the first time not even being a fully closed off obstruction, it was partial) I felt like I was dying. I KNEW. The 3rd time... I was sicker than normal, in more pain than normal. But it wasn't the white hot agonizing pain of a thousand white hot hands griping my intestines like the previous times. So I knew something was wrong, but I wasn't sure what. The fourth time, still less pain. Again, sicker than usual, more pain than usual, but I thought it might just be a flare. Flares are nothing. Flares I can deal with. But it wasn't a flare. More complications.
And this brings me to the reason I am writing this post. Recently, as some of you know, I was very, very sick. In and out of the hospital. Still sick. I was very sick for almost a month and half. I thought for the first couple of weeks, it was a flare. I can deal with those. Just give me a crap load of prednisone! But it wasn't. My bowel had perforated. I am sure most of you can guess this is dangerous and life threatening. In normal circumstances, emergency surgery is usually performed to lessen the risks of peritonitis and sepsis. But I'm not normal. I have already had quite a bit of my intestines removed. The human body, even in an over developed immune state such as mine is, is still quite a marvel. In order to protect itself, it had formed a wall of sorts around the perforation. This was a huge blessing in most respects. It allowed time for "medicate and wait". Which is pretty awesome when the last thing you or your doctors want is to cut into you to remove more of an organ that is starting to dwindle (and definitely showing signs of Malabsorbation and Short Bowel Syndrome). So the approach worked.. kind of. The hole closed up. Which is great. BUT.... I still had lots of inflammation and damage from the perforation that wasn't healing.
The last thing I wanted to do was to go back to the ER. I tried, guys. I really did. I would be so very sick and still trying to get orders done, or at least oversee my helpers so things could be sent out. I ignored the fact I still couldn't eat (it had been a month at that point, only eating some soup or a few bites of something here and there). I ignored the fact I was getting weaker. I ignored the pain. I tried to go to the grocery with my mother, and almost didn't make it out of there. After three more days of me being that sick, my mom insisted. I was resistant. I didn't want to. I had things to do. I had customers that already had orders that were getting ridiculously late. So I did the only thing I could think of to do... I made a gallon of Flax Gel and gave instructions to my son on how to finish it. I had to trust he could do it, because I couldn't.
Then things got scary. I arrived at the ER, barely able to even walk in the door and stand at the reception desk. They got me a wheelchair, and started the intake. But... then... they took me right back. No waiting. No hesitation. Right back into a room where I was immediately put on a heart monitor and oxygen. In no time at all, I had seen a Dr., was given fluids, had a C/T, more tests. Another Dr. Then another. I was freaking out. THREE Dr's. In all my time as a Crohn's patient... I've never had three Dr's consult on my case before I even left the ER. I knew I wasn't going home anytime too soon then. Things unfolded in bits and pieces, really. My potassium was critically low. Ok. I deal with that literally all the time. So I wasn't too worried about that. But, oh yeah, we've been pumping you full of it, and you're not showing much improvement. So we discovered your magnesium is low, too. Then, my first night there... my muscles locked up. My entire body felt on pins-and-needles asleep and I couldn't move most of me. The parts I could move were with great effort. Another blood test revealed my calcium was also critically low. Oh, yeah, and my protein and iron. Was there more? I can't even remember at this point.
So another week in the hospital went by. When I was released this last time, I did feel better than I had in a while. But I was very weak. And my house was a mess. We were out of almost every product. And I was too weak to even be sure I could get upstairs and get a shower by myself when all I really wanted was a long hot shower.
But enough about all that. I'm not telling you this for any other reason than to let you know this next part.
I cried a lot. Not about me. About my customers. I would lie awake worrying about all those orders that were so very late. They insisted on day 5 that I take a sleeping pill because I hadn't slept at all in those 5 days. I wanted so badly to get home and make things right. I was mad at myself for not being able to do more when I did get home. I would overdo it then spike a fever, then cry.
I seriously considered refunding everyone and shutting down. I was a failure.
But my niece, the wonderfully hard worker that she is, worked and worked to get me as caught up as she could. My kids helped out quite a bit, too. But she went above and beyond. And I love her. For so many reasons I love her, but her help with the shop will always be one of the most heart touching things she could have ever done for me.

She got me through until I was at a place where I felt like I could handle things again. Today is the first day in the week since I was released this last time that I woke up and felt.... good. (Well, ok, I didn't actually wake up feeling good, it took about 3 hours. But I'm not being nit picky).
Things are ALMOST all caught up. Just a few more that are pretty late to go before I get into the ones that are a few days over, and those are mostly the sample sets because they are so time consuming (my son cusses me every time he picks up an invoice for a sample order. LOL). I hope to get those last few out tomorrow (I was aiming for today, but the mail came before I could get them all done).
I want thank each and every one of you who have been so patient and understanding during this crazy unexpected mess. I strive for a day when things might stay under some kind of control for more than a year (it hasn't happened in the last 5 years... but I don't give up hope. My Crohn's HAS been under control before. I am determined it will be again.)
To any customers of Sweet Curls Elixir's to whom this information is new, I just ask that you keep in mind, that while I may have set backs, getting orders out is always in the front of my mind. I truly do love my customers. I love making products that you don't have to spend hours reading the labels on 20 different things just to choose one that has most of you want, and doesn't have most of what you don't want.
Ah, anyway, so that is the nature of my invisible illnesses. They do what they want, when they want, with or without warning. They beat me down for a while. They think they won. But then I remember I am more than my disease.

So let me leave you with memes.