December 22, 2016
Walking with an unstable gait, tripping, bumping into things, stumbling down the stairs, not being able to see clearly at times, fatigue, not being able to remember a specific word, name or phrase, not remembering what I’m doing, and so on are just some of the daily challenges I try to put in the back of my mind until it takes front and center stage as it did last night. As I was getting ready for bed in our bedroom, my legs decided to “give out” on me, but fortunately, I fell on the bed and not the floor. I decided to go to sleep right then and there. After chatting with a few people online who also have multiple sclerosis from the confinements of my bed via the Blackberry, I learned this is common with some people. This morning my doctor gave me a few suggestions including using a cane (!). I guess I wont be running anytime soon.
As I write this, it actually sounds worse than it really is but restrictions such as not being able to walk straight or worse, having increasingly poor cognitive skills are constant reminders of my limitations. Fear of falling down the stairs or worse are thoughts I try not to dwell on. Putting my pumps away in storage and searching for more ballerina flats online to replace my “cute and sexy” footwear is a minor lifestyle change that I do welcome in a way. Hey, its shopping!
Working at home on my website, blogging, conducting personal relationships, running errands, household chores, etc is difficult at times but manageable. The real challenge and sometimes shame and embarrassment happens at work. Awkward, clumsy, forgetful, distracted are just some of feelings I try to dismiss. The fear of someone noticing some of my challenges sometimes flash across my mind.
I’m sure I’m making too much of what others think but I did feel the need to tell my human resource manager last week about what I’m dealing with. I don’t remember my motive for telling him at the time, (it may have been fear) but I’m glad I did. Time off for doctors appointments and possible rest days were some of the things we discussed. When he gets back from his vacation next week, we will go over ADA policies, and my short and long-term disability benefits – if it comes to that. Hopefully, it wont.
It’s now the end of the work week and I’m glad it went by relatively fast for me. The next two weeks will be pretty busy with a spinal MRI scheduled for Tuesday morning and leaving for Portland Wednesday evening for several days. My mother is having surgery the day I get back so I will need to be there for her. I also need to decide if I should attend an expo for Green and Chic in early March in southern California, though my Neurologist did tell me I should take a few days off from work. I guess a part of me is still in denial of my need to take it easy. This will be something for me to ponder this weekend.
December 16, 2016
One of my favorite bloggers, Vered with Mom Grind recently published Sleepless. Upon opening this post, you will see a beautiful photo of her daughter happily doing what kids do best. Vered then goes into her feelings of uncertainty and anxiety about the future. The post is real, heartfelt and familar in so many ways.
I had similar feelings about my own future just last night. When I turned 30 on December 1st, I was more hopeful than I ever have been in my life. I have a wonderful fiancé, stable job, growing business, and a lot to look forward to in general. This was after a life threatening marriage, divorce, financial difficulties, health problems, loss of a baby and so on over the past ten years. Things were now looking up.
My recent diagnosis changed those feelings a bit. Just a bit.
Though my life is not in danger literally and figurtively, I still wonder about the “what ifs” , “whats going to happen when…?” and “what will my life look like in 1…5…10+ years from now?”
Those fears were more alive last night as I was searching the bedroom for a quart size zip lock bag to pack away the sundries I want to carry on the plane with me later today. While patting my hand on a high shelf in one of my closets feeling for the plastic bags, I felt my legs “give out” again. (I still haven’t figured out what they call this phonomenom yet). I had enough time to carefully sit on the floor before my body totally gave out. This time the feeling extended to my arms. It only lasts for about ten seconds and I was able to slowly get up (with my new stylish cane) and keep packing.
While sitting on the chaise lounge in the living room later, I thought about if I would be able to have children. Technically, Multiple Sclerosis does not affect fertility or the ability to carry a healthy baby to term, but my concerns are more for the caring and raising of a child. Would I be able to come to the aid of a crying baby? Would I be able to run after a toddler? Play in the park? Would I have the energy to do any of these things let alone go through pregnancy in one piece? I thought about the later years in childhood: parent/teacher conferences, family vacations, birthday parties, first dates, any illness, crises, and major events that happens in the coure of a life. Would I still be walking? Will my kids have to care for me while they are still young? Steve is healthy and vibrant but still 21 years older. Will he have the energy later?
I stapped back into where I was right now: Tuesday night gazing out the window watching the half moon in the sky. I wondered how healthy is it to think about these things. Where should I draw the line? I know we have to plan for our future and give careful consideration to major decisions like having a child, but maybe its better for me to live right now. Silly as it may sound, I thought about the moon and how it doesnt have to worry about survival, it just does. I then got up and finished packing for the trip.
October 12, 2016
For the first time in years, I was able to enjoy time off work during the holiday season which allowed me to think about what I want out of life over the next few years. Turning thirty on December 1st was the perfect opportunity for me mull over the choices I made over the past ten years. I have learned so much from some of the mistakes I have made in the past and I had high hopes that the next ten will not be the same in so many ways. Not only did I learn from a lot of the mistakes I made, but I made major accomplishments in my health, relationships and living situation.
In 2008, one of my goals was to become a business owner and/or freelancer and eventually give up my 9-5 (more like 8:00 – 6:00) to work for myself or at least cut back my work hours. In October, I started Green + Chic (though the planning came long before that). I knew I would have to work hard at it, but it was one of those things you truly don’t know until you are actually doing it. I figured since we don’t have kids and my commute is about 15 minutes each way by car, I can do it. Why not? I’m still young!
Spending long days and nights adding products to my website, contacting potential vendors, fixing HTML issues on the site, marketing, social networking, learning WordPress, writing, blogging, attending local conferences and events and so much more was enough to have me totally fried by Tuesday. This doesn’t include managing personal relationships, keeping up with my health and fitness, housekeeping, and the 45+ hour a week job. Eventually, “burnt” was a regular feeling for me. I figured this is what I need to do to succeed. Besides, Bill Gates didn’t get to where he is now by being “lazy” (not that I want to be a billionaire or anything like that, but you get my point). I thought about the people I know who go to school, work full-time, and have kids – so whats the deal? I just need to work my way through this phase and eventually I will reach my goal even if it takes years. Besides, I actually like what I’m doing sans the day-job. A little hard work has never killed anyone.
While leaving work early to rush to my doctor’s appointment, I thought about the workload I was leaving my co-works and felt a little guilty that I had to take more time off work this week while they picked up the slack. That feeling quickly passed as I was glad to be out of work – even if it was to take care of other business. As I climbed the stairs to reach the third floor of the small medical building, I figured my doctor wouldn’t have anything earth shattering to say to me. Maybe “rest”, “take XYZ” and “come back in a few months”.
My fiancee was just a few minutes behind me and my eyes lit up as he walked through the door to sit with me in the small lobby. We held hands and made small talk before the Neurologist greeted us and led us to his office. He had some good news and bad news for me. The good new is, I didn’t have Lyme’s Disease, heavy metal poisoning (led, mercury, arsenic, etc) and my B12 is in the normal range. “The bad news is you have multiple sclerosis”, he said to me almost in a whisper. I wish he gave me the bad news first.
That next hour spent in his office was almost a blur. Analyzing MRI slides of my brain taken the day before, having everything spelled out to me in plain English, reviewing my current symptoms, going over treatment options, lifestyle changes and so on. Some of the main points I do remember was him counting the number of lesions I have in my brain and his concern that I have so many in and near my brain stem. He also mentioned that my sometimes heavy fatigue is also a part of this disease. Somehow I though that he would tell me that “its normal and you will have to fight through it”. Instead he told me to rest as much as I need to. Even if it was in the middle of my work day, I need, to not resist my urge to sleep or rest. He also suggested the unthinkable: reducing my hours or maybe taking a few days off a month.
Wow, not only was I just diagnosed with an incurable disease, but I was told that everything much change starting now. No more staying up past 10:00PM (or past 1:00AM) to work on my site. No more toughing it out though my days and weeks, and a lot of other things.
Instead of working on my website and blogging, I spend the weekend telling my mother and my brother, researching treatment options, medication side-effects, browsing a local bookstore, looking for a support group in the area, contemplating telling my employer if I decide take time off every now and then, going over my benefit information and so on.
At the end of the long Martin Luther King Jr. holiday weekend, I cried myself to sleep with Steve. Will I continue to do Green + Chic and other projects I’m currently pursuing? Though its enjoyable, it does take a lot of time and energy out of me. It seems like a catch-22 that now more than ever I don’t want to rely on an employer to be stable, but I don’t know how to get to the point that I wont need to work for “The Man” without killing myself. Health insurance is another huge problem. I had pre-existing conditions in the past that kept me from getting private insurance, but I had hope that it would eventually pass or that I could prove that I’m insurable, but the MS diagnosis was the final nail in the coffin.
August 15, 2016
I mentioned on my Green+ Chic blog that we will be relocating sometime this year. Because of recent developments in my health situation, we are taking a closer look at our plans. One thing is for sure, we are cleaning house.
I have been on a decluttering mission for a few months now. The “declutering” category on the On Simplicity blog has been a great motivator for me. Since I started, I have given away about 50 books ( have several hundred left we will keep), several articles of clothing that were either raggedy or too big and taking up space and a few odds and ends.
Other items include:
-A few pieces of furniture we dont want to take with us due to weight or pieces we no longer need.
–Records we are currently selling. We have about 1,000 and many of them are worth quite a bit. It may take us several months to sell them all, but it will be worth the time and energy.
-More books. Most of the books are either totally useless for us at this point.
-Two sewing machines. I will still have one for myself.
-One car that we dont want to take with us.
Teak Armoire (too heavy to move with us)
Singer Sewing Machine – SOLD
One of five bookcases – SOLD
There are serveral other items that we need to photograph and list. Hopefully we will get it done this week.
June 12, 2015
Besides the obvious potentially life changing fears that come with having multiple sclerosis, some of my fears are much less significant. Fears that started out as being mohills somehow turned into mountains.
Starting around the age of eight or nine, I have developed an awareness of weight and size. I had two slightly older cousins who were naturally thin. They were the type that can eat anything they want and not gain an ounce. Though I was still a typical skinny kid, I naturally have a larger bone structure that overshadowed their more frail builds and I felt self-conscious of that. Several times I was called “fat” by them though I was still fairly thin. It was something that I was able to “ignore” by not saying anything back, but it still stung.
Having a mother that constantly obsessed with dieting and loathe at the weight she gained from the stress of working nights as an ICU nurse in a pediatric hospital, going to school during the day to become an RN, raising two young kids and dealing with a severely alcoholic husband didn’t help my perception of size and weight. I saw her go on those ‘80s low-fat diets, Weight Watchers, liquid diets and even diet pills. She would look in the mirror with horror, hated dressing up, constantly dig through her closet in search of the the perfect outfit that “camouflaged” as much as possible and so on.
Sometime in my early teens, I discovered something called purging. It wasn’t something I practiced daily or even weekly, but I saw it as an “out” in case I overate too much of the “wrong” foods. Going through puberty at a relatively young age and sporting a nice C cup at 14, I saw my body developed in ways that pleased me during this time in my life, but I still feared the “F” word. Dieting wasn’t in my vocabulary at this time in my life, but I remained aware of the possibility of needing to cut back on french fries and doughnuts. Having five impacted wisdom teeth removed right after I turned 15 helped me lose about 15 lbs on a two week juice and smoothie diet which I couldn’t be happier to let go of even though I didn’t need to.
Fast forward five years PCOS (Polycystic Ovarian Syndrome) decided to set up shop in my body causing me to gain at least 40 lbs in a short period of time – not to mention several other unpleasant symptoms. Though it was something I wasn’t happy with, surprisingly, I didn’t obsess. I guess at the time, I thought this was par of the course when it comes to becoming an adult. I knew very little about PCOS and didn’t realize that for me, diet and lifestyle can play a huge role in my recovery and managing this syndrome. Most of the women in my family are overweight if not obese. My late paternal grandmother was close to 400 lbs at her death (though she was 6’5”) and most were getting close to that point, except the two non-blood related cousins. I thought this was my destiny.
Time goes on and so does life. Marriage, divorce, job loss (several times), loss of a baby, health issues associated with PCOS and I become more and more unhappy with my body. The purging still goes on, though it’s not chronic so no one not even anyone I have a romantic relationship with notices.
Dating and general socializing again after the divorce made me aware of my size. I became unhappy by not only how I look, but how I felt. I was tired, lethargic, in physical pain from complications from PCOS and the weight didn’t help. Long story short, in an effort to improve my health and looks I dropped from a size 14 to a 6.
Since the weight loss, my life has changed. Men are nicer, more helpful, gracious and generous with me as shallow as that may be. I can go shopping for clothes in the “regular” size section, I dont feel like I have to cover any part of my body, going swimming is less traumatizing, I even look dramatically different. My own brother didn’t recognize me when he saw me in a store once. He looked right through me and stared at me for 10 seconds before he knew it was me. Looking at my “before” pictures, I can see why. It doesn’t look like me since most of my weight was upper body, stomach, face, chest, etc.
Though I feel and look better than I did before, my awareness of my size has increased. I thought confidence was supposed to come with age, but it seems the older I get, the more I fear my body expanding.
With my current symptoms, running is out of the question (at this time). I exercise using a spinning bike (no risk of falling or running into something) and hand weights though my strength has diminished but until I get a rowing machine, that is it for now. My diet is still in check. What if I can’t exercise and stay toned and in shape? How can I be happy with my body at any size? I know I can recover and do some of the things I enjoy but it’s still uncertain and there are no guarantees with MS.
“The best thing you can do…”
…is to rest! You need to take as much time off work as you can at this point.” Dr. Friedberg
I guess that was the last thing I wanted to hear, yet at the same time, it was a relief. He just happened to see me on my worst day last Thursday and it was almost like he felt my fatigue. I still don’t know how good of a Neurologist he is, but he is one of the most compassionate doctors I have ever had of any specialty. That is saying a lot when it comes to the typical Neurologist.
Friday, I saw my Naturopathic Doctor who gave me a list of supplements to take and the reasons for it some nutritional guidelines – Ill give more details later. Thankfully, I was already on the right track, but she gave me some additional suggestions.
Saturday was spent doing some light house cleaning, working on budgets and hanging out on College Avenue shopping, sitting at a cafe outdoors (despite the weather, we were in good company), buying salmon and other goodies for V-Day dinner.
Sunday and Monday was spent at home hiding from all of the (very much needed) rain we are having in the Bay Area. There is a water pump in the basement of our home and every 15 minutes, I heard it churning out all of the water that kept passing through at night. I silently prayed that it doesn’t stop working! The house is on an in-climb and I worried about flooding, falling trees and mudslides as what was going on in other parts of the Bay, but everything held together. Everything was fine.