Saturday, January 24, 2009

Med Trial, Part One

I'm in the process of trying out a new medication. So far it isn't working out very well. I've been getting all of the side effects and none of the benefits. I'm extra dizzy and fatigued. I'm even sleepier than before. I'm having more headaches, nausea, and burning in my hands and feet. The past two weeks have been pretty rough. Will has been here to help me each day. He starts school on Monday, though, which would leave alone with a three year old during most of the daytime hours. Thankfully, my mom is coming to my rescue! She'll get here tomorrow and help me through the week as I adjust to the new medication. Praise the Lord for my mom.

Me and My New Blog

As time goes on, it becomes harder and harder for me to keep in touch with friends and family. Can I declare correspondence bankruptcy? (I'm borrowing that idea from my friend, Emily who declared email bankruptcy a year ago.)

I tried to publish updates on my website every month, but that never happened. By the time a month went by there was too much to write. I couldn't keep up. I'd have to push off the task, and then it only became bigger. I have a huge update to write for my website now. Will it ever happen? I'm not sure. I want to write it. I just haven't been able to do so up until this point.

I tried to send out Christmas cards this year, but was quite unsuccessful. Only three were ever delivered. Half of the envelopes are addressed and sitting in a box (for next year? or just to taunt me?). The Christmas cards were never written. I tried. I tried very hard. One night I ended up in a heap of tears because I was so overwhelmed with everything I thought I had to do and just simply couldn't do.

Thus, the idea for this blog was born. Maybe I can keep up with little tiny updates on a regular basis. I can just post a few sentences, or a picture and a caption.

I'll still write and email my friends and family as I'm able, but there are no grand promises. Many days it is more of a physical task than I can handle. Some days it is all I can do to eat, nap, talk to my family, shower, and go back to bed. Other days I'm able to think clearly enough to pay the bills, read to William, and make a shopping list. On a rare good day, I need to use that precious energy to play with William, enjoy time with my husband, and maybe even go outside.

The goal with all of this is to have fun and be effcient. I'm not going to pour over my posts and check for grammar and spelling errors. I'll type quickly, and just hit publish. This is me and my new blog. I hope it's fun for writer and reader alike.

Friday, January 23, 2009

Mito and Moving

Health update:

An update is long overdue!  It is hard for me to keep up with the big updates I have been doing on my website, and so they keep getting pushed off.  The longer I have to push it off, the bigger the update gets.  Then it gets harder and more impossible to do.  It's a vicious cycle!  As a way to make things easier, I have started a blog.  I hope to be able to do small updates frequently.  The blog also has a much easier editing program, making updates simpler and more time efficient.

Now, onto my actual health update.  The tests from Dr. Cohen so far have not shown anything
diagnostic.  This is neither good news or bad news.  It is just no news.  The problem with mitochondrial disease is that there aren't any tests to rule them out.  It is very possible that I have one, but the tests have been inconclusive.  There are still more DNA tests to be done, but the preliminary test results don't give clear enough direction for where to procede next.  Dr. Cohen said that he would be happy to evaluate me again in the future, but for now we've hit a road block.  If/as my symptoms continue to get worse, I will go see Dr. Cohen again.  Perhaps new symptoms or new severity in my symptoms will give him a better idea of which DNA tests to run next.

I have had a lot of troble in the past few months with brain fog.  I am usually a little "foggy," but lately it has been worse (adding to the difficulty of website updates!).  On some days the brain fog has been very bad.  It has gone beyond just brain fog into more severe cognitive difficulties.  On one weekend in particular I was very confused.  Our apartment no longer looked familiar to me.  I forgot to eat and drink, and Will had to remind me regularly to do so.  I could not carry on a conversation.  At one point I forgot who my son was when I saw him.  That was very scary.  Thankfully, Will was here to help me through the difficult weekend.  We also have wonderful neighbors who have volunteered to be on call whenever I need help.  I have had difficult days since then, but I am now able to recognize the warning signs and rest before the cognitive difficulties become too severe.  My doctors have wondered if I'm having some seizure activity in my brain during these times.  The general consensus, though, is that my brain just isn't getting enough blood flow despite medication and compression hose.  The best treatment is just to go to bed and keep my feet elevated. 

I'm in the process of doing a new med trial, which has been difficult.  I often get the side effects without the benefits.  The jury is still out on whether or not the med is helping.  Meanwhile, I'm just hangning in there as best I can.  My mom is here to help out while I work through problems with my meds. 
Regular Life Update:

We have moved!  We are now living in Kentucky so that my husband can attend Seminary.  Moving was very hard on me physically, but with a lot of help from my family I am managing.  We have been in Kentucky for almost 6 months now.  There is still some unpacking to do, but we are mostly settled in to our new apartment. 

William really likes his new big bedroom with his little bed and all of his toys.  Will is doing very well in seminary and is enjoying his classes.  I like living in a small apartment.  It is much easier for me to get around.  We have some wonderful neighbors and have quickly made friends with them.  We are so thankful for the opportunity to be here.  God has been providing for our needs, and it has been amazing to watch Him open all of the right doors, and provide a way for Will to go to seminary.
I'm tired and won't be checking this for grammar and punctuation mistakes.  I've been working lately on simplifying and being efficient.  I can't be a perfectionist like I used to be.  It's just not physically possible anymore.  So this might not be the perfect update, but at least it is complete!  There is now one more thing I can check off my to do list.  Ahhh....

Edited to add:
This post and all posts from 2007 and 2008 are from update pages on my old Cranberry Tea Time website. Now that I have merged my blog and website into one, I am am moving the old updates over here.
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