Archive for the ‘Random stuff’ Category

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Relapsing Polychondritis

October 5, 2014

About 12 years or so ago, I had this bizarre phenomenon begin. At random times one of my ears would turn beat red and begin hurting. It only lasted about 15 to 30 minutes at a time and I never really gave it too much thought, but I thought it curious that I couldn’t find anyone who knew what it was. I had asked my PCP, the kid’s pediatrician, an allergist, really any medical person that I came across. None of them had an answer for me, and some of them looked at me as if I was crazy. I was beginning to think it was something I was imagining. The only problem with that was that others had seen it happen.

Approximately 5 years ago, I had an injury that left me in a tremendous amount of pain and ultimately believing that a normal lifestyle was out of reach. Through the process of seeing doctors of various specialties, I happened into the office of a world-renowned rheumatologist. While there, I asked him the question… Without hesitation, he told me that what I have is relapsing polychondritis. In a nutshell, any of the cartilage in my body can suddenly become inflamed, including my nose, ears, joints, trachea, mitral valve, etc. For years I had thought the red ear thing was amusing. My doctor warned me that if my airway becomes involved, I shouldn’t hesitate to call 9-1-1. Shortly after my diagnosis, I had a new experience when my nose, only the right half, became inflamed and painful. This time, instead of lasting only a little while, it lasted 3 days before I sought medical attention. I was put on a ten day prednisone taper. After a day or two, the swelling began subsiding, then on day 5 or 6, the swelling increased again. Eventually it did clear up with prednisone.

Over the next year, I would have multiple flares, usually not requiring prednisone, until August of 2013. I had a flare with my nose, but I also felt as though I had an elephant sitting on my upper chest. Scared, I had Jeff take me to the emergency room. Unfortunately, the doc I saw there was not familiar with my disease. He looked it up and put me on 60 mg of predisone. I had never had more than 20 mgs and my body immediately went haywire. I could barely get out of bed, I had no interest in anything, I sat and cried for no reason, and I thought about the many ways that I could just simply end it all. Jeff, recognizing that something was very wrong wouldn’t leave me alone. If he couldn’t be there, he would make sure the girls were with me. That lasted about 2 weeks, but then as I began feeling somewhat more normal, I felt disconnected from everything going on around me. The only way I can describe it is that state just before you fall asleep or just as you wake up, when you can hear what is going on but you can’t really interact with other people or things around you. I saw 3 different doctors before it was recognized as a form of dissociative disorder brought on by the prednisone. Rest and a slower taper eventually put me right.

By the time I saw my rheumatologist again, he was rather concerned about the flare I had experienced, particularly since it involved my airway.  I had previously refused to go on an anti TNF drug, for another suspected rheumatological disease, but now it seemed wise to go on something to try to prevent further flares. So, I began taking methotrexate. From August through October of 2013 I was on both MTX and a very low dose of prednisone, while the MTX built up in my system. I also needed to come slowly off of the prednisone to prevent further dissociative symptoms.

I have been fully on MTX for about one year now, and the side effects suck! I am frequently exhausted, in a brain fog, and I struggle to feel normal. In addition to the MTX I have to take folate to minimize side effects (haha), vitamin B to keep me as even keeled as possible, and biotin to keep my hair from falling out (a nasty side effect of MTX). In addition, I have to go for blood work every 8 weeks to make sure my liver is okay.

At the end of August this year, I hit the proverbial wall and decided it was time for a change…

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Jeep Owie

August 9, 2010

This past Wednesday we went out to do a little running around, then headed to Starbucks for coffe and chai. As we pulled up to the light there was a little girl, about 10 or 11 years old, crossing the street. When she reached the corner, she pushed the button to cross the street where we needed to turn right. Jeff inched forward a touch and apparently the girl behind us thought we were going to just go, so she did. She ran into the back of the Jeep. All 3 kids were in the car, but for the most part everyone was okay. Sarah and I have sore necks, but the Dr. says they should be okay with a little time. There was a police officer in the line of traffic behind us, so he had witnessed the whole thing. The little girl made it safely across the street.

The damage to the Jeep isn’t too awful, but there is more damage than we first thought. An adjustor came out today and assessed the damages. Here’s what it looks like.

Just about 10 minutes before we were hit, I turned and Sarah was holding a free weight that Jeff had just bought. It was only 2.5 pounds, but I told her to put it down. I was thinking that it could be rather dangerous if she was holding it if we were in an accident.

The young lady that hit us was driving an Alero so her car didn’t fair so well, but she was not hurt either.

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Sad, but Hopeful

May 19, 2010

It’s been a sad few days. My zoom lens, which I use most often, has ceased working. It won’t autofocus and as it attempts to, it grinds horribly. This all began a few days ago, so last night I wrapped it snugly in a box with bubble wrap and then sent it off to Nikon this morning. I sure hope they can fix it. I really haven’t felt compelled to take many pictures since it died, but I do have a few that I should probably post, but not at midnight…perhaps after some sleep. Goodnight. I’ll be dreaming of functional lenses, hoping for the soon return of mine in working order!

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Glitch Fixed

December 16, 2008

When I posted about my birthday gifts, I was annoyed that the pictures didn’t resize when clicked on. It started after WordPress moved to version 2.7. I went into the forums to see if anyone else was having this problem, and sure enough, I was not alone. I have since fixed my last 3 posts, so now the picutres will again enlarge. YAY!

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Nikon D3

October 5, 2008

I got my hands on a Nikon D3 today!

Okay, before anyone faints…I only held it. I was standing above the tunnel where the players enter the ice from the lockerroom, when a woman toting 3 cameras came by. She was trying to squeeze between the barricade (steel bars) and the glass to get to the players bench. She was definitley thin enough, but she was holding one camera and had two around her neck. As she started through the opening, I told her I was going to hold the cannon she had around her neck, as the long lens on it was about to smack into the wall under the glass. She thanked me and handed me her Nikon D3, asking me to hold it instead. I did so, then grabbed the Cannon again, as she, again, nearly smacked it into the wall. As I handed her D3 back, I picked up my D40, which was around my own neck, and sighed, turned to Jeff and told him I was jealous. Oh, well! It is probably the only time I will ever hold a $5000 camera and it was cool! Yeah, I’m a geek!

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FOUR POSTS!

July 6, 2008

I must apologize to all 3 of my faithful readers…I have been slacking! BUT, not including this one, I have written four new posts today! I am in the process of gathering all of my Florida pictures into one place to put together a slide show for another post. I will try to do that while I have the next two days off, but no promises. Enjoy!

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I thought it was spring…

March 30, 2008

I tried to post this a couple days ago, lost it somehow, then found it in my drafts, so here it is. Since I started this, most of the snow is gone again.

Doesn’t this look like a beautiful spring day? Look at all those buds on the tree and that gorgeous blue sky!

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Can you believe I took both the photo above and the one below on the same day? The tree in the one below looks perfect for a Christmas card…

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All this snowing and thawing and raining, etc. has turned my back yard into a lovely swamp…swamp.jpg

I truly can’t wait for those lovely spring days when it gets warm during the day and cools off nicely at night! It is supposed to be in the 60’s on Tuesday, but with rain. I don’t really think my yard needs more rain!