Long Time…No Post

For anyone who actually reads this (all 3 of you) it has been a long four months since I last posted. In an effort to only share good news I’ve waited to post until I had some, but good news has been in short supply these last four months. When last I posted I was off to get more tests with the idea that I could nail down this illness and start moving on. Well things didn’t work out exactly as I’d planned.

The good news is that all the blood tests and the spinal tap showed that I don’t cancer or a brain tumor. That was a huge relief. But further testing; including an EEG, showed that I have seizure activity in the left side of my brain. Another MRI showed that the lesions were active on the left side of my brain, a sure indication of MS. Not good news. In the meantime, my short-term leave expired on August 15th and after 11 1/2 years I am no longer employed at Ampere Media. It has been financially devastating for my family and assuming I ever get cleared to go back to work it will certainly be a challenge to find a job. Let’s just say that statistically the job prospects for an unemployed 52 year old woman with a BA in English are not good. Would you like fries with that?

In related news, during this whole thing my mother had to have emergency heart surgery to repair a valve in her heart and have double by-pass. Originally it looked like the surgery was successful, but two weeks after, the valve started leaking and she required a transfusion. In a very short time we had to move her out of her apartment into assisted living. She will never get better, but for now she is holding her own and her blood pressure and blood sugar are doing well.

So, what started out as a simple blog to chronicle my path to going gray has turned into something completely different. But I have learned some really great lessons these last few months. First, you never know how many people really care about you until you need them. In my family I have always been the go-to person for getting things done. This is probably due to being the oldest. But when my mother became ill, my sister-in-law Elyse took care of getting her moved and into independent living. We couldn’t have done it without her.

My older son, JJ and my middle son Will have been a constant source of emotional support and without my mother-in-law Virginia I would be living in the streets babbling to myself. But mostly I’ve learned that we are not born alone and sometimes we have to lean on others when things get tough. I’m seeing an MS specialist on October 3rd and continue to see a neurologist to fine-tune my meds to keep the migraines somewhat under control.  Most days I’m still to wacked-out to do much, but I am hopeful that at some point I will get this thing jigged.

And finally, on a lighter note. After almost and entire year of being gray, I’ve decided to have some fun and start experimenting with fun colors like purple, pink and red. And I don’t mean “Emma Stone” red. I mean Rihanna red. According to Ann; my stylist and friend, the gray parts will be bright colors and the rest will just remain dark. Ever since the early ’80’s I’ve wanted purple hair and now I’m going to get it. I’ll post a picture as soon as I get the color done in October.

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3 Comments (+add yours?)

  1. Rebeccca
    Sep 28, 2011 @ 20:40:29

    Hi Nancy

    So sorry to hear about the MS but I have a dear friend in LA who’s been living with it for years (18?) and is only now starting to walk with a cane. She has kept a great attitude about it and a sense of humor. (I tease her that I can’t tell if she’s wobbly from her glass of wine or the MS!) Life does throw us curve balls….my boyfriend is dealing with now having to take insulin for his Diabetes but he’s managing well. I just have the achy joints and a few cysts here and there. My dad has prostate cancer that has spread to his bones but he’s approaching 90 in Dec and it’s looking good. Sorry for all the health news…..look forward to seeing you at the 35th reunion…..if there is one! xoxo Rebecca aka Becca

    Reply

  2. Kathy (Adams) Edwards
    Sep 28, 2011 @ 21:38:07

    Hi Nancy-

    It’s Kathy Adams (I am now known as Kathy Edwards) and we hung out a lot during our River Trails days. I remember your Mom as a lot of fun, and I am the one that slipped while attempting to ice skate at your birthday sleepover–going to the hospital for stitches, and some guy who I didn’t know, had his mom drive to the hospital and he handed me the roll of life savers that slid out of my pocket when I landed on my chin at the ice arena. I was very moved by what you wrote and I want you to know that I am truly sorry to learn that you have been diagnosed with MS. I am sure that each and every test you had to go through to finally get the correct answer was very nerve wracking and I know the diagnosis you got in the end had to be a complete shock. I am so glad you have a wonderful family to stand by you and help you through this. I think you are handling this news with your excellent attitude and the sense of humor I remember you always had.

    I will fill you in on my family and what has happened since you and I were friends, way back when. Our family had serious health problems, I lost a sister-in-law during childbirth in 1982 ( my oldest brother Mike’s wife) and it was all preventable, massive medical malpractice occurred at every step on the way to her awful outcome.

    Her child, our wonderful niece, Katie, will turn 30 next year, and is a huge light in our family’s lives.We had to watch her until she was 5 for any seizures, as they said she suffered fetal distress when her Mom fell into a coma, when her bp hit 280. Her Gyne decided to let her be in labor for 42 hours, even though she was not progressing with dilating, and he decided to go out to dinner with his wife while Linda lay in the hospital, and with such high b[, her brain stem blew. She was unconscious and on life support for 7 days as we all kept vigil for her at the hospital, to no avail.

    My Mom passed away in 1998 from the deadliest type of brain cancer, and from diagnosis to death, lived only 9 1/2 months. My Dad is going to be 86 on 10-21, and he had a tough past 6 months of health issues, but is the true comeback kid. He is doing much better now, and married a very close friend of my Mom’s (her husband passed away two years before my Mom) and I always loved her and her family growing up, and now her 8 kids are my step-siblings. What a strange world. All of us (combined 13 adult children of Dad and Rose Marie) often say in our wildest dreams, hanging out as kids, never would we have thought our parents would ever marry one another!

    When you mentioned seizures and lesions, I could not help but think of my oldest sister, Ann. She is 53, and in 1996 she was taking care of her dying boyfriend (he was in the final stages of lung cancer) and while she was sleeping, he was awake and he noticed that she had a seizure during her sleep. She went to the Neurologist and was sent for an MRI, which located a (eventually found to be benign) brain tumor, which they said had been growing for 10 years. She also was diagnosed with an AVM. (arterial Vascular malformation) which she had been born with, and it had never been found until the MRI she had for the seizure.

    She had two subsequent brain surgeries at the Mayo Clinic in Rochester, and still to this day has the occasional seizure. The Dr. told her at Mayo that once the brain has been invaded (via any surgery), it never forgets and it will react once in awhile forever, due to being bothered. I found that fascinating and annoying at the same time. She has something called “focal seizures” which are very short in duration, but she is able to feel when one is about to hit.

    I want you to know that i will follow your blog, and I will keep you in my prayers. I recall your great smile, fun sense of humor, and high intellect. You were a lot of fun to hang out with in junior high.

    I will fill you in about my life a bit. I married a great guy in 1993. His first wife passed away from breast cancer, so I have 4 wonderful step-kids. They were 7, 10, 13 and 17 when we married, and now the baby is 27, living and working in Japan, teaching Japanese high school students how to speak English. The oldest of the kids lives in NY and is a freelancer. Our oldest daughter is 33 and is the only one of our 4 that is married – she lives and works near Boston and we adore her husband.

    Our granddog, (their beloved dog, Booch) died on August 26h and it rocked them to their core as he was their family member, just like a child to them, as they have no kids. Our youngest daughter lives in Highland Park and is dating a great guy now. She just turned 30 on 9-11.

    You hang in there, Nancy. I know you are a strong woman and you will do all you can to stay on top of the latest news and best meds for your MS. I hope you can join a support group? If not in person, then one on-line? I think it really helps to reach out to others who have the same diagnosis. Only they know how you really feel. Keeping you in my prayers, Take it easy.
    Kathy

    Reply

  3. Kathryn
    Oct 03, 2011 @ 18:52:16

    Oh my gosh- how stressful 😦 Hang in there, Nancy. You’re such a strong woman and I know you’ll get through this- the job problems, the health problems, etc.- without any trouble. On a brighter note, I’m excited to see some fun hair color on you!

    Reply

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