Long Overdue Post With Graphic "Sickness" Language :o)

I have not posted since January because Ira was basically sick since January. For those of you that do not know, Ira has Lupus. We do not really talk about it, he does not like to be characterized by Lupus at all. But, our world has changed. In the past, with his regular Lupus flare-ups, we are just sort of used to living our lives around it. Ira used to suffer intermittently with fever and flare-ups. Now it is pretty much every day. He was diagnosed in August, 1987 with Systemic Lupus Erythematosus (SLE or lupus). It is a chronic, potentially debilitating or fatal autoimmune disease where his immune system attacks his body’s good cells and tissue, which then results in inflammation and tissue damage. In a nutshell, he feels like he has the flu - all the time. It sucks. It really, really does. His autoimmune system is very poor, so being around someone sick is dangerous for him. To make things more interesting and fun, he was diagnosed with Discoid Lupus two years ago. He started developing these dark spots on his arms, legs, ears and head that turned into sores and sometimes got horribly infected. Huge, oozy, painful cysts.

He had his right shoulder replaced in April 2005 (side effect from his medicines) and developed a really nasty cellulitis in the same arm due to one of these ugly little sores. It took three rounds of a really strong, REALLY expensive antibiotic to finally knock it out. It was basically a cyst the size of MY fist. Painful and ugly. We hid it from everyone. We were able to and could because it could easily be covered by his shirt sleeve.

Did I mention Ira's job is golf? Unfortunately, now, he is completely allergic to the sun. That is why all the little sores kept popping up and would not go away. In March he lost his job. Talk about scared. I am glad to say that he was ultimately able to medically retire from his position and collect his pension. It is a lot less money than what we were getting, but at least it is something. But that did not take place until July. Oh, let me get back to the meningitis fun we had...

In March Ira's job was over. Stress makes Ira sick. Well, losing a job is stressful, needless to say. But especially when you have an illness that requires daily medication and insurance. Well, he got sick, sicker and then the sickest we have seen in years. He lost about 60 pounds and was extremely weak. He at this point was bedridden. This went on for about six weeks. Let me tell you, after being up all night with Ira (his fevers are worse at night) up all day with the kids... I was completely exhausted and scared. Then out of nowhere, one morning, he was completely disoriented. I only thought I was scared before. Getting him to the emergency room was an ordeal that you cannot even imagine, not to mention school for McLaine. Finally got to the emergency room around nine a.m. and they did all their tests, everything was normal as it had been at all of our doctor's appointments for the last month and a half. Ira was still disoriented and had fever. Finally at noon they did a spinal tap on him. The tech did not even know how to hold someone for a tap, so I did it. Because he was thrashing intermittently I was glad to be of help and Ira would respond to my voice. He wasn't mean, angry or anything like that but... when someone doesn't understand what is going on around them and they cannot communicate to you - you just NEVER know what could happen. As I was holding him for the tap and talking in his ear he told me he loved me. So sweet.
We had to keep him extremely still and it is a very painful procedure, I peeked over the doctor's hands and saw Ira's spinal fluid. It was thick and yellow, like puss. Spinal fluid is supposed to be clear like water. Well, now we knew what the dealio was. It was some sort of meningitis. Were we exposed to anything? How long was he like this? Who have you been around? The questions, the questions the quarantining, but I was so mystifyingly happy. I just felt an overwhelming relief. At least we had something to treat! Don't get me wrong for one millisecond. Ira being sick is not a good thing. By any means. But! It is a horrible, horrible place to be in when someone you love is sick and you are taking care of them, and nothing can be done. You're losing them and everyone is looking at you. That is what the last six weeks had been. People would ask, have you called the doctor, what do the doctors say? I can't believe there's nothing "wrong" with him, I can't believe they won't put him in the hospital... blah, blah, blah. And then there are the remarks of she is crazy and she overreacts blah, blah, blah. But when something is wrong and no one knows what it is and all the tests are negative, what do you do? Seriously, what do you do? They don't just put people in hospitals for nothing nowadays, you know what I mean? So, when I saw the spinal fluid I was strangely relieved. Something to treat! Something can be done! It isn't a mystery anymore! "now she's really crazy" right?

Well, it was determined within an hour that it was Group B Strep Meningitis. No quarantining, can be treated with medication, hospital stay. Woooo hooooooooo! I was looking forward to a full night's sleep. Oh crud, hearing loss? possible blindness? neurological impediments? WHAT DO YOU MEAN DO WE HAVE A WILL? Okay full night's rest for tonight wasn't happening.

He was in the hospital a total of eleven days. We did go home and have to go back once in between but we are here. He still has some "episodes" now and then. They have not determined whether or not they are seizures. More tests to be done. He is still having headaches and fever. We are not out of the woods yet. But, I'm happy to say that life if going on. Back to our "normal"? Not this time. We have a new normal. But it is what it is.

The Lord has carried us through, again.