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It's been a while...

Sep 04, 2009 - 3 comments

So I haven't had occasion to visit the site in some time. I've got so much going on and I've been so busy with work that it never crosses my mind to come and see what's going on with everybody else. I got an email today about updating my MS tracker, so I came over to the site and figured "what the heck, I'm here, I might as well log a journal entry" and here I am.

So I started having new symptoms about 2 and a half weeks ago and decided to go in to see my neurologist's PA just to be on the safe side. Well, we have the appointment, we do a couple of simple neuro exam things and she says "lets get you an MRI of your brain and c-spine" and I said OK. I go in for the MRI and the order is written for the T and C spine, not the C spine and the brain. I'm pissed because of the huge deal it is for me to get in to do an MRI and so I do the C spine and then leave, telling them that "I'll be back". So the neurologist calls me on 9/3 at 6:05 PM and tells me that there are new lesions in the c-spine mri and an old lesion is enhancing with the gadolinium and so it's doing bad things to me at the same time. He says to continue with the brain MRI and then we'll get together and have a conversation about treatment. He wants me to get off Avonex, which I've been on for just about 5 months, and switch to Tysabri and I said "I'm not comfortable with that" and he said, well, let's talk about it.

So, here we go again... more inconsistency, more unnerving lack of clarity of my disease progression, more pain, more treatments, more more more. I've been quietly fighting depression for a few months now and I'm putting off talking about it to anyone because of a variety of reasons, cost and time being the two primary ones. I just don't know what to do anymore and I'm just fed up. I'm afraid I'm going to just stop caring soon (not that I would ever do anything to hurt myself, but just stop fighting, you know?) and I 'm just tired.

Maybe I'll get all my ducks in a row and finally break down and get help, but I really don't want any more on my plate right now...

Other than that, everything is peachy. We're expecting another baby in April of 2010, which I'm excited about. I love my kids and couldn't see living life without every one of them. They all show me how precious life is in different ways every day and I thank God for that. Sometimes, it's just nice to get an excited hug from someone who loves you and missed you so much that they just jump at you the second they see you. That's fun.

I'm going in for a brain MRI, and then a run of SoluMedrol again and then a follow up appointment with the neurologist to put all the puzzle pieces together and figure out what to do. Wish me luck :)

Comments
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648910 tn?1290663083
by saveone, Sep 04, 2009
It is good to hear from you.  It does indeed sound as though your plate is full.  However, having a counselor means not having to carry the plate alone or to figure out alone what on the plate is the first thing you need to deal with.  I highly recommend it....can you tell...lol

I am sorry your disease is progressing with new lesions.  I hope the MRI comes back clean and stable.

Please don't stay away so long.  But most of all CONGRATS on the new baby!  Do you know what you are having yet or do you guys like the surprise?

be well,  terry

572651 tn?1530999357
by Lulu54, Sep 04, 2009
Hi Jason, it is good to see you back even though your news really stinks. I'm so sorry to hear that your disease is progressing and has changed again.  

Please keep an open mind about Tysabri and listen to what the neuro has to say.  

In the meantime, reconsider talking to someone about your depression.  I started on wellbutrin about two weeks ago myself.  My neuro spotted that I wasn't doing so well and suggested I give it atry.  I'm not sure if it is helping, but it definitely isn't hurting anyting right now.

Stopping caring is not an option - understand?  You have too many good things in your life to not give up on them.


I know what you mean about those spontaneous hugs and kisses - my granddaughters do that when I come in the room and it makes me feel like the most important person in the world for about 3 seconds!   It always makes my day. A new baby on the way too - lucky you and your wife.  

Please keep in touch with us - you know where to find us.

my best, Lulu

751951 tn?1406632863
by PastorDan, Sep 05, 2009
Jason, I'm not sure our paths have ever crossed here, but I am pleased to meet you.

The thought of a new baby always reminds me of Robert Frost's observation that the birth of a new baby is God's way of telling us that life should go on.  I could elaborate on this and a dozen thoughts this afternoon, but it would be hard to say more than the poet said in just that simple statement.

May God bless you and yours more in days ahead than ever before.

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