It has changed for my little family a lot lately.
We have moved from the home that we built with the intention of never leaving...and it has been a little tough for me to take. The people who are renting it from us are great, and I know will take care of it and love it, and that has made it somewhat easier, but man...the ego has been shattered a bit.
We are in transition, living with my parents, hoping to pay off a few bills and get some solid footing underneath us. I am hopeful we will find a place to rent for a while and then build again in the next year or so. Hopefully for real this time. I CANNOT take another packing/moving adventure every few years. It sucks.
I also had another doctor's appointment this past week. The neurologist I saw specializes in the optic nerve and ran another 500 tests on me. She was very kind, but also very matter of fact; which I appreciated. She is also Harvard/NYU/Boston Med/Uof U. educated, so her opinion was very valued in my mind.
I didn't realize until after the appointment how much I had hoped/assumed she would just down-play the major lesion on my brain. I don't even know why...I just thought she'd probably take a look at my four MRI's and say, "Ah...you know, I wouldn't really worry about it."
That's not what I got.
I received good news being as that my optic nerve looks normal and healthy now, which is a very big relief.
Almost within the same sigh of relief, came the "Oh man..I can deal with this" sigh (the one where you suck in order to encompass any strength left within your soul.)
This doctor let me know that my lesion is "big" and not good. She concurred with the belief that this lesion was the nasty bugger causing all my numbness and cramping on the right side of my body. She said it definitely looked like MS to her, and she completely understood why I was being sent for testing.
In fact...she ordered another test.
Yippee.
Although this next one is supposedly not uncomfortable and painful as some have been.
This doctor also said that she believed it was in the beginning stages, which is why the MS specific testing is not always coming up positive yet. She actually said, "Ah..if they re-did the lumbar in a year or two...it would be positive."
Nice.
I am not ashamed in the least to admit that I am still living in the lovely land of denial when it comes to the reality of my life with this disease. Even as I type this, it feels a little "out of body" because I really have not had time or energy to devote to dealing with this emotionally. Someday I will...and someday I may need to learn better coping skills.
But, for now...this way is working most of the time...and most of the time I am okay.
Okay is okay with me.
11 comments:
I'm glad you have a good doctor, though the news sucks, I'm really sorry!I've been thinking of you!
Ugg I want to cry with you about the move thing, but be positive because I know it will ALL work out. Health and all. One of my favorite quotes of ALL time is by Flavia Weeden, "We never know what small miracles may come". You know that, so just keep on believing.
p.s. I'm a fan of denial
ugh. i wish you had received better news. :( but just know that i love you. you are amazing. while you are living close we should get together...... :) im so sorry you had to say goodbye to your house. drink a large diet coke for me. loves...
Hey Jenny! Thank you for your sweet comment on my blog. I'm not sure who sent you there, but I'm glad they did! Sometimes it helps just to know you're not alone. Although the only thing that would truly help would be to not have this darn disease at all. I know the fear and denial you're living with and experiencing. I have been on this roller coaster for about 8 months now. I am so very sorry to hear you're on it too. Not a fair thing at all being young mom's with so much more on our plates. I'm sorry to hear that more than this is going on right now for you and your family. I hope peace and comfort will be with you at this time. You look so familiar to me, did we go to school together? If I can ever be of help to you, please don't hesitate to contact me. May the Lord bless you and your family. My thoughts are with you and my heart goes out to you. We can both beat this thing!
I have been thinking of you and praying for you. I think you are amazing. I am so sorry about your news.
Sarah, yes...I think we did although you may have graduated a year or two before me. I graduated in 97. Seems like ages ago...;)
interestingly enough, as I scrolled through your blog
I noticed a picture with some friends of ours from our old neighborhood, the Lindseys. We just love them, and usually play softball with them each Spring. We didn't this year, and I've missed seeing them. In fact, Tracy had left a message during the week I had my lumbar puncture and I didn't get it for a while (due to the fact that I was completely out of commision for a week). Let her know I'm thinking of her...
We will have to keep in touch; it is comforting to relate with someone.
I have been thinking about you tons. I am glad you have a good Dr. I know you have dealt with too many not so good ones. I understand denial, it is my best friend... but Please don't be in denial of how amazing you are.
Hang in there, and know that there are a lot out there that love you and are thinking of you! You are an inspiration to many, including me!
What a small world! The Lindsey's moved into our ward about 3 years ago. Tracy served as my 1st counselor in YW's and we got to know each other really well. We just love them. They moved to St. George a week or so ago, and we miss them like crazy! I just texted her earlier! I'll tell her you said hello. I thought maybe you and I had gone to school together. I graduated in '96. Hope you don't mind if I check in on you every so often.....now that we are in the same, crazy club! Take care, and I'm serious, if you need to vent ever.....I'm here for you! Anna Steiner that went to Davis has been that sounding board for me....she knows all about this. Her blog is on the side of my family blog as well. msedup.blogspot.com Take care. Hope you're doing ok on this roller coaster for now!
Sounds to me like you are handling everything with much grace. You have so much on your plate right now. I agree with you...we need a spa day!!
Hugs!
I can't remember how I know you! Syracuse or Davis? Anyways, my dear, we are in the same MS boat. I'm so sorry to hear! I happened upon your blog and I wanted to say that I am so sad that you have to go through this too. It is so hard to discover that you have a life changing disease like MS. But, hang in there. Life does go on, and life IS still GOOD! Hope you don't mind if I check up on you.
You can check my blog if you want.
msedup.blogspot.com
Take care and chin up!
Much love,
Anna
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