Wednesday, July 28, 2010

The Wait is Over.....

.....And apparently, so is the hope of ADEM. Dr. H. called me a little while ago. Looking at my scans, he told me that it didn't appear to be so good. One of my lesions in the T-Spine had started to diminish, which would be a really awesome sign.....but the fact that I have another new lesion, that is rather big, is not. He feels that after reviewing the written reports and studying the MRI scans, my results and symptoms are more consistent with MS now. When I asked if that meant we were ruling out ADEM completely, he said, "No, nothing can really be ruled out completely. However, you are clinically doing better, and haven't had any more bouts of sickness or any new vaccinations, but you do have a new lesion. ADEM can come and go as well, but usually is accompanied by sickness/vaccinations. Since neither of those have taken place, it leads me to a more clinical diagnosis of MS." He did mention that my Brain is still free and clear of any lesions, which is wonderful at this point. The MS is contained in my spinal chord for now. I am grateful for that, I really am. Dr. H. is highly recommending we start the shots, but is also very supportive of our opinions and decisions at this time as well. He knows our desire for another baby. He supports that too. He still feels it could be as good for me as the shots for now. He told me to talk things over with Trav and decide if we want to start medicating me while trying for a baby. I can stay on the shots (if I take Copaxone) while pregnant, if I choose. Or, I can just wait til after a baby and then start the shots. Dr. H. offered to meet with me sooner than Nov. if we wanted to discuss more in detail with him now. He told me he was sorry to have to deliver that news, and was hoping for a better outcome for me. Of course, the tears started coming and so, I ended the conversation rather quickly. So much to process. So much to think over. I feel like I'm hearing this diagnosis for the first time again. Why is this so hard for me to deal with? I wish I could say I was handling it with grace, and taking it like a champ. But all I want to do is hide in my own little corner and cry. Maybe scream. Maybe even hit something. After 7 months of the if's, and's, why's and all the testing.....I'm tired and overwhelmed by the responsibility of carrying around this disease. I just looked up information about Copaxone. The side effects go on for a couple of pages. That in and of itself scares me, not to mention it can cost up to $24-37,000/yr. I don't feel comfy taking Tylenol when trying for, or expecting a baby, let alone a daily interferon shot. Sometimes, I wonder if we ought to give up the hope of another baby and that maybe this whole MS thing is our answer that it's best not to keep trying, seeing as it's been a year and a half since the loss of our baby. But I can't get rid of this feeling that it will happen, and I definitely can't deny the feeling I had as my Bishop and husband gave me a blessing. So, for now I will pray for the peace and comfort needed to move forward, and wait for my sweet hubby to get home. If anything, talking to him always makes me feel better. Besides, my amazing neighbor just showed up with some Chocolate Covered Cinnamon bears. Thank Heavens for those that listen to inspiration. You know who you are, and I thank you so much for following a prompting to come and visit me.....regardless of what you witnessed when you walked through the door! And, a huge shout out to my buddy Paige. Again, she helped me in the process of getting my results today.....love having her as my Neurology Body Guard! Thank you to all of you who have called, texted, etc. to check up on me. I know you have a lot better things you could be doing with your time than worrying about me and my issues, so I thank you from the bottom of my heart for your kindness, love and support. It means the world to me to know you care. I know this too shall pass with time, but in the words of Ingrid Michaelson, "I just wanna be ok today!"

4 comments:

Anna said...

OH... Finally some news. :( I'm sorry it isn't the news we wanted. Only you can know what to do about the drugs and trying for a baby. You will know what to do. But its ok to take time to just settle in and think things over. Don't have to make decisions all at once. You have all the time in the world. I am so so sad you have to do this. I hate MS! I wish I could take yours away; I would if I could. I'm crying now, too! You aren't alone. Love you! I am here for anything you need. Life will go on and life IS still good. :) Hang in there.

Ed said...

Love you! Keep hanging on...

Lori said...

TOUSIN! I just want to wrap my arms around you and cry together. I'm so sorry! Would it help at all if I brought you the spoon out of our powdered sugar bowl? Or maybe we could just sit and scream "oh my Josh" together! I love you and want you to know you are in my thoughts and prayers. I hope you find something bright and happy to look forward to each day.

Jenny H said...

Hi,
You don't know me (I don't think)...someone annonymously left me a link to your blog through mine bc I had posted about my impending MS diagnosis. I am still not "definite" but yesterday was too given news that it is looking more certain. I haven't written much about it on my blog, nor have I shared much with others, which is actually quite unlike my typical nature.
I appreciate your openness in sharing your story, and have been thinking of you lots. I'm praying you'll feel comfort during this hard time.
Jenny