Interim

Where have I been? I've been burying myself in the illusion that things are more normal now that I do not have doctors appointments and an unknown diagnosis to deal with. Just work, chores, and training as usual. Yesterday was a bit hard because I called the clinic and found out that they needed my MRI images and the assistant to my neurologist stated that I should wait. So I could have delivered it right away, which was my initial thought, but was told to wait. So I left work like a bat out of hell to deliver the damned disc. The clock started all over again because of the three day weekend so in seven to ten days, I'll hear from the clinic about my appointment.

Work was overwhelming all week, due to regular work stuff. I was frustrated because I'd been working from home and staying on top of things but was still slammed all week, racking up three hours of overtime thus far. But that is really a bonus, as I'll need the money.

Last night, when going to bed, I got upset and shook J and told him, crying, that I needed him to deal with this, to be OK with it and face it. He'd been keeping his head in the sand and not wanting to talk about it. He evidently spent today reading from my MS for Dummies book and told me he plans on reading it to the end. I explained that I didn't necessarily need him to research but just be willing to deal with it. I apologized, again, for freaking out on him last night because I shouldn't have done that. But he said that was the right thing because he didn't realize how much I needed him to deal with it and face it head on. So now he is here with me, facing it, willing to talk about it, willing to let me bring it up whenever I need to.

But my life is not all about MS and I'm back on the treadmill. I ran my three miles today and plan on going to Dance! Dance! tomorrow, followed by, hopefully, four miles on Saturday. I'm getting back to where I was before this all started. I know it will never be 100% what it was but at least I can do small things, like run, go to work like a normal person, and bitch about the after work chores like cleaning up after the guinea pig, vacuuming, trying to get a brake light because your right brake light is out. Sure, it is frustrating to work all day and have to do chores after work but at least it is normal.

So that is where I've been. Today, I almost drew a comic to show what my "this can wait" in bin looked like because it had gotten out of control. But I didn't have time and I felt it would have been a bit abrupt to just jump to that without anything in between.

What a week. I lulled myself into the happy bliss of zero medical appointments and no longer having to wonder what my diagnosis might be only unleash a maelstrom at work. I work all day, through lunch, only to have to do chores after hours. And the EA goes on vacation tomorrow so I know that it will be a nine hour day, at least, before my prescribed three-mile run.

And today, unfortunately, I found out that I am an idiot (no, more so this time, really) for trusting the incompetency of the assistant to my neur

Here we are at a week since diagnosis. It seems less and less real as the days go by and I don't have a doctor's appointment. The referral form states that the patient will be contacted in seven to ten business days so I carry my cell phone everywhere so that I won't miss the call. I grow more and more impatient every day, especially as I continue to read a book I borrowed from the library, all about MS. Knowing that it is important to start treatment as soon as possible makes me feel a little crazy inside because I can't do anything until I receive a call. I don't even know if I should start the steroid therapy now or if I should wait until I have a clinic appointment because I don't know how it works and am afraid I'll take the steroids too early and have to take them all over again.

Delayed Shock

The full weight and shock of my diagnosis hit me at about midnight last night and I broke down into tears and sobbed. I don't think I'm actually sad about this - is that strange? Sadness just strikes me as an odd emotion to feel for myself about something like having a disease. But I'm scared and I'm confused and I don't know what to do. Nothing has been very easy during this process, easy or straight forward. I had to see multiple specialists and undergo all sorts of tests, all spread out over the course of this month. I was so relieved to have my diagnosis that I didn't take into consideration what that diagnosis really is.

And I still don't know. I don't know how I'll be treated other than the probable drugs and monitoring. I don't know how far advanced my particular disease is. I don't know what I should expect, be aware of, or be on the look out for. I just plain don't know.

All I've been doing is assuring others that I am fine, that I am OK with this, and making jokes or being silly. Yesterday I made stationary using the image of my MRI, which was given to me by my neuro ophthalmologist. I worked like a tyrant trying to play catch up and continued to speak with interested parties about my adventures towards the diagnosis and yes, yes, please calm down, no I'm fine.

Oh, and god damn it, I don't want to hear about your friend, your ex-girlfriend, your mother's friend's kid, or that kid who you grew up with whose father had MS and was just fine. I know you are telling me this because you want to reassure me that this doesn't mean I'm going to suddenly become infirm but right now I don't care about anyone's experience but my own. Perhaps that is selfish but I have a feeling that it is to be expected and normal. I don't care that everyone is fine because what if I don't get to be one of them? And why can't I just think about me and about the other possibilities?

Again, I know these people are well intentioned and so I don't blame them and I just continue the conversation as normal when the subject of who they know with MS comes up. But inside I just seethe and rage because I'm tired of hearing about it.

I texted my boss last night and told him I wouldn't be in the office because I'd just felt the real shock and needed a day. He's perfectly fine with that, of course, fine and supportive. When J suggested that it would be better for me to go to work rather than sit at home and just be upset, I was angry and hurt. I explained that I couldn't go in and have to be jokey about it and I couldn't go in and act like the deadlines and work I had left over was important but I'm not. I think that's part of the reason it hit so hard last night. I've been so busy trying to get people to not worry about me that I haven't worried about myself. Not properly. And I haven't allowed myself to be important enough and worthy enough for the attention and the worry.

So I'm taking today to process it all and to cry when I need to and think about the worst when I need to. I'm taking today to shut myself off from the office and the distractions. Now I know why people were surprised that I went in on Tuesday after receiving the diagnosis. I ought to have been devastated and at home with Jeff being comforted. The shock was just delayed but I have felt it now and I'm not going to run from it.

Verdict

So. I have multiple sclerosis, the big MS. Honestly, I was relieved by the diagnosis since it makes sense of so many things as previously mentioned and isn't as bad as inoperable cancer or embarrassing like syphilis. But I do feel as though I could make one of those overly dramatic pharmaceutical commercials.

"It all began when I was jogging and I suddenly felt a pain in my neck and head. Days later, the vision in one of my eyes began to blur. The pain went away but the vision got worse...could I have MS?"

Of course, they'd show me wearing  a sweater with sleeves long enough to stretch over my wrists, gazing out of a window on a rainy day, mug of tea in my hands. The voice over telling you to talk to your doctor if you've experienced these problems and to ask about whatever drug is being shilled would begin. I will be shown outside raking leaves or gardening, laughing with friends, and maybe cuddling on the couch with my husband, a book open in my hands.

Tomorrow I go back to the neuro-ophth and I hope to never have to see him again as his abrupt manner doesn't suit me. My neurologist referred me to the OSU MS Clinic so I'll hear from them and be set up with a visit. My mother is going to fly in so that she can go with me and I think I'll ask J if he can go as well. It isn't that I'm scared; I just think it would be very good for both of them to know about the clinic and my treatment, for them to be educated so that they can both feel better about this. My mother was, initially, angry. I think she found it incomprehensible that her baby girl should be diagnosed with something she finds to be odious. J, I believe, was scared, worried that I was more scared or upset than I was letting on. But I think he understands now that I'm truly OK with the diagnosis so he is getting over it as well. Right now he is on the phone giving his mother the news.

Frankly, I'm tired of relaying the news! I went into the office and made my rounds, going from office to office, cube to cube, thanking people for their support and filling them in. I work in the best office ever. So much compassion, love, support, and kindness, just flowing out and embracing me. And they are so genuine and sincere! If I have to have MS, I must say that I consider myself lucky to have found this out whilst surrounded by all of these wonderful people.

And now I can relax. I can exhale and lean back and just relax. Because I have my answer and no longer have to wonder and fret and consider worst case scenarios. The relief is amazing.

Just Acknowledge that it Might Not Be OK

Why is it that people just want to say you'll be OK? I suppose they think that I

Breaking the self-imposted rule

I'm not supposed to be doing this. Yesterday, after a failed run on the treadmill, I gave myself that night to wallow and fret with the understanding that I would take the next four days off from worrying, wondering, thinking, and talking about this mysterious ailment. Why? Well, because my run was a fail. I had run a scheduled 2 miles on Tuesday but on Thursday I only managed 2.25 before having to break for a walk. I walked .25 miles and then tried more but stopped after .1 because I felt tired and weak. My boss and others have said it was the Valium and I'll try again tomorrow but no matter what the cause, I was upset. I felt this was really intruding on my life. OK, so it intruded when I had to go to the ER and visit specialists I never thought I'd have to see, but I'd been given clearance and had all the tests and I, a non-clinician, had decided that it was OK to just go back to normal life. So I gave myself the evening and the next four days were to be silence.

Did you know that ignoring the elephant in the room didn't work? Wow, shocker. Because I'm an idiot. I did pretty well during the work day because I was super busy but now it won't leave my mind. I've found reason why MS would be a good cause because it would make sense based on thing I've dredged up from the past. I looked up the symptoms, yet again, and for the first time, I started thinking about whether or not I had anything to match them (previously I'd looked them up to make sure I didn't have them).

1. When I first moved to Columbus and was going numb on one side. I always chalked this up to stress.
2. The fact that I choke easily on saliva and beverages. 
3. Those occasions when I look down and feel a tingling sensation in my spine.

Again, these could just be nothing, simple facts of life that creep up. But when there is a possible, life-long, chronic illness that may be to blame, it almost becomes a hope. It would be comforting to have MS as a diagnosis just to make sense of this. Also, MS is not what it was when I was little.

I have always had an irrational fear of getting multiple sclerosis. I have no idea why. I know nobody who suffers from it and the only thing I know about it is probably false. I think I saw something at least 8 years ago about bee venom being used to treat it. Yet I've always been really scared of it. Nobody in my family has it that I know of. Granted, my family history extends to my mother's side, my father, and his parents. But still, I cannot name a single relative who has it. My initial thought to the idea that I might have it is "well, it has to start somewhere in the family tree, right?" But, given the history I am aware of, you'd think I'd be terrified of cancer. Nope. I just always assumed I'd die of cancer and was scared of MS instead.

If it is MS? Well, by this point, I think I have myself set to accept it. Like I said, it would answer a number of mystery ailments I've suffered and it isn't what it used to be. According to the scary neuro-ophth that I saw, if I have it and am diagnosed now, my chances are good.

But that isn't really the point is it? The point is that I should be hoping and researching lesser causes like virus infections and sarcoidosis. So why aren't I? Why am I so stuck on this worst of the worst? Is it because, as I suspect, that I'd rather prepare myself for the worst known cause rather than fear some complicated and terrifying untreatable cause? Or am I one of those weird people who masochistically wish for problems for the attention? Considering how tired I am of talking about the issue with people at work, I do hope it is not the latter.

I told J that I will probably cry harder at the diagnosis of a virus than at a diagnosis of MS out of sheer relief. I have been and probably will continue to prep myself for the worse so as not to have a total break down that the idea of a get out of jail free card will most likely make me break down into a puddle of tears. Here's hoping that is the case.

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