No Answers in the Land of the Not Quite Right Today!


I’ve been thinking a lot about happiness lately. I agree with Penelope Trunk that happiness is more about satisfaction than any measure of happiness per se. Here is a link to her blog and she posts about this question fairly often, so you’re sure to happen on one without reading too far in. http://blog.penelopetrunk.com/

After my doctor’s appointment yesterday, I’m still feeling someone frustrated in general because we still have very few answers outside of what’s NOT wrong with me. The lupus panel came back negative, so we are back to square one. Which is we have no idea what’s going on with me. The FNP did have input on it maybe being a severe food or environmental allergy. “All aboard the Here We Go Rollercoaster, first stop Complete Uncertainty followed by Complete Non-Direction and quickly followed by What’s the Next Step? stations. Please keep your hands and head in the car at all times and please do not pull the emergency stop cord as this will completely derail your car and force a do over.”

After having a nice “reflective” chat with my supervisor, I am thinking in all sorts of directions. I’m feeling pretty consistently burnt out lately and I know that it’s because of all of these unknowns in our lives right now. I’m not feeling positive about anything in my life right now and I don’t like being in that place. I think that I need to clear my head out, so I’m thinking of a vacation. Sigh. Maybe the week of the Midwest Writer’s Conference (http://www.midwestwriters.org/) will revitalize me in soul and brain.

I feel like I’m surrounded by snipes right now, too. I sometimes hate cube farms. For someone on the spectrum this situation is a giant morass of OMG! and trying to interpret every word/thought/action/etc and how it relates back. I’ve become very withdrawn on a lot of faces, but still trying to stay afloat. I think so much about the possibilities of things lately and where opportunities are leading or not leading. As you can probably tell, dear reader, I’m not feeling like I have many opportunities that are actually leading anywhere.

I haven’t been able to get my brain in gear to write lately, either. Not being creative frustrates me. It always has. So maybe taking a week off to just be creative will help. The Best Buy guy continues to stack things up in my creative rooms, so I can’t even get in there to be creative. I am definitely feeling as if I have no control over anything in my life right now and the things that I do have control over are hit and miss because I have to ration my energy to deal with all the stuff that is out of my control.

Serenity is extremely far away today…..

Hurry Up and Wait and Other Methods For Putting Off the Future


We’ve had lots of waiting in our lives lately. It has been a very challenging time in our lives. First and foremost we are on the edge of possibly finding out what’s going on with my health. Around Memorial Day, I woke up one morning with no peripheral vision on my right side. $500 and 3 trips to the eye doctor, one of which was in Lafayette, and a random blood test, there are still no answers and varying degrees of loss of vision depending on the day. It mostly seems to depend on how I feel that day. Kind of a sucky trade off, I know. The eye doctor in Lafayette, who charged me $250 up front before he would even look at me and then did a half assed examination of my eye that was not anywhere close to what my eye doctor here in Marion had done, had no better answers for me except that it was “expanded blind spot syndrome and lots of people with this have lupus”.

We scheduled something called an ERG with a doctor in Carmel and waited some more. This is exactly why you should ask lots of questions about tests and why tests are necessary. The random blood test that they did here in Marion that actually precipitated this trip to Lafayette turned out to be our first clue. It was called a sed rate test. This basically measures how quickly your red blood cells fall in a test tube in a specific amount of time. This shows inflammatory activity in your body. Apparently mine was sky rocket high. I finally went to my regular doctor in the middle of all this, basically to see if I actually needed to have this ERG done, which I found out was a MRI of my eye. After 3 doctors had told me that there was nothing wrong with my eye, they wanted me to go and get an MRI? No, thank you. The nurse practitioner that I finally ended up with took about 3 gallons of blood and ran about every test imanginable. She is thinking lupus as well.

After last week’s round of blood test, I have good kidney and liver function. My ANA which is another test that they wanted done that basically is a snapshot in a moment of time of antibody activity was normal. This is not necessarily indicative of anything, though. It basically tells us if there’s a reason to run the lupus screen, but my smart cookie of a FNP decided to just run that regardless. Rheumatoid was high but normal. Vitamin D was low and calcium was low. Yay for menopause! So now I have a prescription for the ever present nauseau and a Vitamin D supplement. Then there was another antibody test that high normal was a 4 and mine is like 16.

There are no answers here. Sigh. So now we are waiting for all of the other various screening panels to come back. I hope that there will be some answers at my appointment today. Waiting and waiting. Best Buy guy is trying to be patient. We feel like we are on the cusp of so many things that are going to change our lives completely that we don’t know what to do. We are definitely feeling caught in a tailspin.

Wee Geek moved into his own apartment last week. I have so many reservations/feelings about this that I just try to keep them to myself and hope that fate works out a little better for him. Of course, I am still livid that the system that supposedly was protecting my son did little but screw us both royally.  He is angry and defiant and having a pretty shitty attitude about the whole thing, but coping and moving forward. Why I was ever silly enough to think that the system would actually work for us in the end, is completely beyond me. I hope that the voter’s of Delaware County are very aware of Kim Dowling’s record of protecting child abusers and assholes before they make her a judge. She has a very long record of working for what essentially looks like the common evil. I’ve seen her in action personally and I’ve watched her work on others. It’s truly a wonder, but not a good one. She is as crooked as they come. It helps that she’s managed to get lots of judges snowballed into believing that she is actually spouting the truth when in reality, it is only the truth as she sees it. This does not necessarily reflect even the slightest hint of reality. She truly has the gift of dressing a pig up in fine clothing.

I just feel badly that Wee Geek is the one that has paid for it. It’s a very hard lesson in what is right. His dad once again was patted on the back for stealing from him and making everyone miserable to match his own miserable self. It’s sad that the system felt that money and an expensive and crooked lawyer equalled justice. Sigh.

I’m glad that Wee Geek is moving forward. He’s had a rough go of it this last year and I am planning something in the back of my brain for the one year anniversary of returning to my life. I have been thinking about this quite a lot lately. His dad worked really hard to ruin the relationship that we had, and he didn’t manage to do anything of the sort. I knew in my heart that his godmother was right. I had him for 15 years, I put a lot of good things into that child in that time. I see it every day. He never resorts to the lessons that his dad tried to teach him because they were not good lessons. They were just little circles of hatred and malice that should never be repeated. Wee Geek knows what makes a good person a good person and he really strives to do the right thing most of the time. Of course, he’s 20 and he often thinks with his male appendage, but overall, I think he is successful in doing what is fair. I’m glad that I managed to teach him these things.

There are big changes on the horizon and I will continue to move forward. I do not know today what it all looks like or even what it might look like in the future. It’s a little scary. Sometimes though, this is the route to take. The path of the unknown. The path of moving forward no matter what it might actually mean. Sigh. One thing is for certain, though. Updates are imminent.

Post Wedding Apocalypse and Other Fallout


The heat hangs heavy in our house like velvet drapes around our bed and sleep eludes me. So it must be time for another blog. Finally! The first of the kids is out the door and off into whatever passes for wedded bliss these days. Although I have worried obsessively that Wee Geek would be the first, this has not been the case.

I have felt like the outsider perpetually looking in at an extremely bizarre passion play. This process has made an indelible impression on the Best Buy guy and I. He has struggled with lots if things and it has been painful and joyful all at the same time.

I have never seen the BB guy in a tux. He completely left me out of it all. He did it all himself and I did not see him in it until the day. He cleans up nicely and I don’t think I have ever seen him so puzzled nor so handsome. The man was at a loss and I had to dress him. Just like always we got through the hardest parts together.

The BB guy’s ex-wife has did a lot to make me feel included. It has brought up so many emotions for me that I feel overwhelmed with trying to pinpoint one. It was still a moment of disconnectedness and watchfulness. It was interesting to watch at any rate.

The BB guy has roller coasted from proud to feeling like a walking wallet. The skirmishes here have all involved money and he has become very sad over the reality of that. He has been left with a sour taste that nothing he has done has been good enough for his children in their own eyes. This especially resonates with us in reflection of Wee Geek who is acutely aware of the things that are done for him. What a difference having that chunk of time forcefully removed from us has made. Things have not been easy for him, this is assured. No one is paying his way through life and his father does not feel obligated toward anyone but himself.

I watched this wedding with amusement and sadness. It is exciting to watch two young people standing on the edge of life and priming themselves for the jump that will be the icy and cold water of reality. It is sad to watch my husband let go of something that was only fleetingly his.

This last year has reminded us of the promises we have made to each other and has tested them more than ever. We have been through the reappearance of Wee Geek in our life (which is nearing it’s year anniversary), double cataracts surgery for BB guy, the removing of a daughter from the payroll ( so to speak), and now the strangest thing, the partial loss of some of my vision.

This has been the oddest chapter so far. Although in looking back, I realise that this has probably been happening for some time. I woke up one Thursday morning to having no peripheral vision on my right side. A visit to the eye surgeon has left us puzzled. There seems to be no cause and the tests are not good. My eyes are healthy. I have had nothing like a fall or a head bump to precipitate a problem. I am having horrible headaches from the struggle of my eyes to focus together. This has also made a significant decrease in my abilities of depth perception. Which makes steps look like sloping insurmountable hills and all surfaces are suddenly suspect because I’m unable to perceive their subtle changes. I feel helpless and afraid. I do not know what this holds for our future, but fear a further stressful test. A visit to the neuro-opthalmologist has not really yielded many more answers. All signs seem to be pointing to lupus and so the next step in an anabolic nucleur blood test that may or may not give us any anwers.

In the meantime, I’m feeling the full weight of every ache and every pain and I’m trying to not let it send me through the roof with worry. I know that this is something that’s been happening for a long time. It’s one of those things that is conclusive after they’ve ruled everything else out. Wee Geek worries that both of his parents are ill and what this means for him. I’m worried about being able to function and BB guy seems content to sit and wait. I know it’s not really doing any good to worry while we wait, but still. In the big picture, everything else seems stupid.

I think a lot about the potential effect of all of this and it’s daunting. I’m trying very hard to stay off the websites because this seems to only add to the mounting panic that I’m barely keeping at bay. This is where the Asperger’s adage of prepare for the worst really comes in handy. In the meantime, I feel like crap all the time. My head hasn’t stopped hurting in weeks and as an added bonus plan, I feel nauseous all of the time. I’m not really too impressed with this feeling, and today, I feel like I just need to go home and lie down.

That sounds so good that I think I will do it.