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Long Time Coming

January 24, 2016

It’s been ages since I last blogged! My webspace provider shuttered his business sometime in late 2014, so I lost my space. I toyed with finding new space, but I enjoyed being able to pay a few dollars a month, automatically debited and not many places provide that at a price I am willing to pay. It occurred to me recently though, that I could simply revert back to posting through WordPress, so here I am.

So much has changed in the last year, I’m not sure where to begin! I am still eating plant strong, but I have succumbed to my sweet tooth on too many occasions. It is definitely time to get that back in check as well as making the gym a habit again.

We have found a church, finally! I was invited to check out Victory Community Church a little over a year ago and within a couple of months Erin and I were not only being blessed by the messages and the genuine people there, but we were involved with the worship team.  Erin began singing and I joined the visual team. Sometime last summer Jeff also started attending regularly. We are so blessed and able to bless others. It’s been such a long time since I have felt at home in a church!

Yet another hockey season is winding down. This one was different though. Erin hung up the skates at the end of last season. Her primary reason was to get away from the all-consuming beast that travel hockey is. She told me that there is so much more to who she wants to be than a hockey goalie, but the sport consumes one’s time like quicksand. Politics played a lesser role in her decision as well.  So this hockey season has been about coaching for our family. Jeff is an assitant/goalie coach for the Edge non-tournament bound U12 team and Erin is a student goalie coach.  I’ve done stats for most of the games and have traveled with the team to most games. It is so different and so much more relaxed, and I am enjoying it. I am looking forward to having our weekends back though. 😊

It is my goal to bust out the camera and start taking pictures again, so stay tuned and keep checking back for new posts…with pictures!

 

 

 

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Plant Strong, Poison Free

October 11, 2014

Sometime in early August my parents started telling me about this crazy sounding diet they were following, which had them basically eating a vegan diet but with no oils or sugar. My initial reaction was that I could never do that!

After a particularly rough methotrexate week, I began researching medications other than MTX that could control the disease. My options seemed to range from bad to worse, so in desperation I simply began searching for anything and everyhing on relapsing polychondritis. There isn’t a lot out there because it is such a rare disease, but I happened across a post about a woman who, through diet, cured her Polychondritis. She was following Dr. McDougall’s program. I have always know that certain foods can trigger inflammation in the body and I have tried to eliminate many of them, but this program seemed extreme. As I read more about it, I realized it was the same diet my parents are following, just with a different name. In fact, they had heard of Dr. McDougall because he endorses Forks Over Knives, the diet they are using.

Since I go for blood work every 2 months, it didn’t seem like I had anything to lose by trying the diet and cutting back on the MTX slowly. I went plant strong on August 31st and had blood work done on October 3rd. After only 5 weeks of changed habits I was not expecting huge results, but what a surprise I got! My CRP, C-Reactive Protein, (an indicator of inflammation), had begun to slowly increase over the previous 2 blood tests, but now it is at 1. I am anticipating it will drop to 0 eventually! Unfortunately, my sedimentation rate, which has been elevated for at least a year, was not run in this round of blood work, an error on the lab’s part. However, I did notice that for the first time in nearly 30 years I am neither borderline, nor full-blown anemic. My hematocrit jumped from the low 30’s to 41. Did I mention that I eat no animal products!?! I am so excited about my numbers that I want to shout from the rooftops!

I don’t have cravings for the things I removed from my diet and I am eating all the time. As a nice side effect, I have lost 10 pounds in the last 5 weeks. I am excited to see where my new, better choices take me!

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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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Recent Random Ramblings

June 24, 2013

Late in April, the 30th to be exact, I was following my then manager down the stairs at work. I was walking, something I rarely do on stairs, because my manager was wearing heels and walking in front of me. As she turned the corner on a landing, I missed the bottom step before the landing and went sailing across it, into a wall. Somehow I managed to fracture my right fibula and sprain my left ankle. The sprain was much worse so for about a week I walked around on the fracture while using a crutch for the sprained ankle. Upon visiting an Orthopaedic Surgeon, I was fitted with a right walking boot and told to ditch the crutches and air cast for the left ankle. His instructions were that I could take off the boot to drive, but the more I wore it, the sooner the ankle would heal. I took that to heart and got Sarah to drive me everywhere except work. The Ortho Doc told me I could use the other ankle as much as was comfortable. Somehow I decided that going to the Lilac Festival was a good idea. We walked very slowly and took many pictures! I am terrible with flower names, so please feel free to correct me on any I may have mislabeled.

pink peony

Peonies

 

Bluebells?

Bluebells?

More Bluebells?

More Bluebells?

Magnolia

Magnolia

 

White Redbud
White Redbud
Sarah imitating a squirrel?

Sarah imitating a squirrel?

Erin imitating a squirrel?

Erin imitating a squirrel?

In the Poet's Garden with my fashionable boot

In the Poet’s Garden with my fashionable boot

Erin showing off her "hardwear"

Erin showing off her “hardwear”

 

No clue...laughing too hard to take a decent photo...they are weird!

No clue…laughing too hard to take a decent photo…they are weird!

We had fun, but I was ready to be done after about 30 minutes of wandering. I do not recommend damaging both ankles at the same time…

 

 

 

 

 

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Shakespeare in the Park

June 24, 2013

This past weekend we decided to go see a production of Hamlet in Delaware Park in Buffalo. Since I am still sporting a walking boot for my sprained left ankle, we got there plenty early so we could park close and not have to walk far. As we were waiting for things to get started, I got this very serious candid of Erin.

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She is decidedly not my “little” girl anymore. She is now taller than both Sarah and I by more than an inch and she’s still growing.

It’s really quite remarkable that there is a crew that erects a stage complete with lighting and a sound system in the middle of a park. Here is the stage before the show got started.

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We initially were going to sit so center stage was directly in front of us, but we wound up moving to be able to see better, so this was then our view of the stage…

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I didn’t get pictures of all of the actors, but here are my favorites.

Rosencrantz and Guildenstern

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Ophelia and Laertes

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Polonius (who was my absolute favorite)

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The man who played Polonius seemed to put his everything into the playing of the character. Then, upon Polonius’ death, he played one of the grave diggers. In both roles, he was absolutely wonderful.

Even though Jeff and I lived in Buffalo for about 3 1/2 years, we never went to see Shakespeare in the Park. Since the girls are currently very into Hamlet (David Tenant’s role as Hamlet to be specific), we decided that during the “off-season” (hockey, that is) we should go see a show. We all had a great deal of fun and the girls spent quite some time critiquing the performance afterward. As we were leaving, Erin asked if we could see it again before Hamlet is done…in 3 weeks. Hmmm…

I definitely would recommend a jaunt to Buffalo to catch a show.

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Oops!

February 15, 2013

Last weekend, we lost a fairly large tree in our back yard and took out the power.

tree_fall

Erin and I took a hand saw to the mess and here is what is left.

almsot_done

Here is the pile of debris from cleaning up…we still have a ways to go.

brush

Erin was quite pleased that the tree had enough manners to not destroy her garden fence, but instead fall nicely in the opening of it.

garden

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Sledding

December 31, 2012

I took the girls sledding yesterday, and what fun they had!

First, they went down on their own sleds, but Sarah couldn’t seem to figure out which way was down…

 

backwards

Then they went down together on one sled. Time Lords? I wonder if their hats are bigger on the inside?

timelords

 

I guess Sarah was tired, so she decided to lay down… hahaha! (I think there might have been some snowballs flying)

close

Sarah determined that this is NOT the best way to sled down the hill.

 

ineffective

As I was watching the girls go down and back up the hill, I caught sight of this. About midway down the hill, the sled tipped, the pooch jumped out and ran full tilt UP the hill, while the woman righted the sled and continued down. The dog seemed to love the sledding adventures. I watched it go down with a couple different people a half-dozen times or so. It was QUITE amusing!

silly dog

I just thought this was a cool action shot with the snowball midair.

action

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