Possibilities

How is it possible that years and years go by without a single post from me??!!

Well, possibly it's because life is rolling and blossoming and unfolding in front of me all the time. And of course there are huge challenges and terrifying emotional jumps-off-cliffs as well.

This is all certainly never been more true than the 4 years or so since the last time I posted on here. 14 months ago I birthed twin boys, at 39 years old. Now I'd like to say "Oh it was an easy journey, full of sunshine and magical experiences" and it was. It really was. But the rest of the story is that I spent the 2-3 years prior to this experience riddled with anxiety and stress about the decision to have children at all.

Could I have kids?
Would I be a good parent?
Do I have the support to get me through this?
Should I go off my medication, possibly risking a worsening of otherwise stable and minimal symptoms of MS?
Was it fair to bring children into a family where their mom might have medical issues that would affect their lives?

I was paralyzed with fear for at least a year. I worked and went through the motions of life. Crazy stuff continued to happen, like my far-flung mother moved basically to my doorstep from across the country. This brought up a whole new layer of worry over what kind of mother I was going to be, and whether I could really care for her and a family of my own.

I started seeing a therapist after I had a breakdown in my doctor's office just trying to explain that I questioned whether I wanted to have kids. At my age, every doctor started asking me if this was in my plan, presumably because I'd need to make changes (meds) to even think about it.

This therapist sat patiently through several emotional-crisis appointments. At one point I told her I know a few people who have a parent who has MS, and I know it was so hard for them growing up with that. She pointed out that in the last 5-10 years big gains have been made in managing MS and my experience is also totally unique. Then she asked me what these friends of mine are like, "Are they compassionate people?"

I had to answer that, yes, they were all very good people: close to their families, and happy and successful, and indeed, compassionate people. This really was a turning point in my worry, in that it took a slight step back in my decision-making process, although I still worry every day.

I quit MS medications after speaking with my neurologist, for 2 months, I got MRIs done and yada yada. I had previously quit birth control medications for other reasons. I charted my cycle. I got pregnant. At the first ultrasound the screen flashed across a large circle and then another circle. "It's twins," I thought, right as the tech said so.  My husband repeated, "Oh my god," about 40 times.

So here I was, a high risk pregnancy on a number of fronts. 39 years old, twins, MS patient, no previous pregnancies. They kept running tests. Some of them I refused, others I requested. Each decision was grueling and scary.

It was not really easy, I was nauseous forever and ever and ever, I gained weight. I was tired. I kept working. Thankfully I didn't have a lot of other pain really, like headaches or heartburn or other things some women deal with during pregnancy. I was lucky for that. At 30 weeks they put me in the high risk pregnancy ward and monitored me incessantly for a few days before rushing me into an unplanned c-section when my blood pressure sky rocketed in response to or conjunction with distress from the smaller twin. I never went into labor.

The twin boys (2 lbs and 3 lbs) went into the NICU for 8 weeks and then one came home, on a heart monitor, tiny as could be at 4 lbs. For a whole week one baby was at home and one was in NICU, and it was against the rules to bring the discharged baby back to NICU. So my husband and I were split in two and worried over weird test results from the twin left in NICU. Day in and day out, each night bleeding into the next sleepless night. We called the sun "The Scareball."

But both babies came home and got bigger and stronger. They ate more and more, and they started to smile, and they grew stronger and stronger. I pumped milk but had great difficulty because I did not get the physiological connection/response due to the distance NICU caused, and because it was painful and slow for me to pump. Every 3 hours I pumped for an hour. It was extremely hard. It took me away from my babies for 1 out of every 3 hours which was torture enough.

I was able to find a friend of a friend as a milk donor to supplement my small output and we continued with about 50% formula as well. We did that for about 8 months until the donor's baby started using up her full supply, and we increased formula. I quit pumping a little after 10 months when my husband injured his back and I simply could not spare the time and baby-watching coverage to pump.

I worked full-time, we hired a nanny, and my husband and I took turns working from home and taking time off frequently. At 4 months they had to have a fairly minor surgery. It was a surreal year. I don't know who that mom was that managed all that and still had a smile for those babies 50 times a day.

The twins (boys) are 14 months old now. They're on their own preemie timeline of development, as typical. They are amazing and sweet and adorable and quite healthy. We have pieced life together. We have to re-evaluate every few weeks because so much changes so quickly, and because it is pain-staking to keep working under these circumstances. I feel guilty frequently. I feel disconnected. I feel lonely. I feel unsure. And terrified. And pressured.

But I try to focus on the bliss that comes along several times a day. I focus on gratitude and the infinite possibilities ahead.

Summer in the City

Well, its damn hot. Real damn hot. They've had a water main problem in my county and they are threatening to shut off water for 150,000 residents for a "few" days. Although it won't affect my neighborhood, I feel for the disabled and impaired, or just car-less, residents that will be affected. Its not easy to cart several gallons of water home from the store on your scooter in the blazing heat.

At any rate, I'm still dragging around a wool blanket-like pile of hair that I'm growing and harvesting to donate in honor of my mother that just clawed her way through breast cancer treatment successfully. I've had to talk myself down from sawing the whole lot off with a box cutter when its getting in my way at work. Now I guess I have to think of what hair I want to be left with so I can get it gone.

My liver enzymes have been ever so slightly elevated recently, and recent discussions with the Neurologist yield the waiting game, and more blood tests, in order to determine if I will have to switch off my injections onto something else. So far, no emergency issues, just waiting.

The Hubby and I went to Montreal on vacation and jaunted around the city, eating lovely crepes, butchering the French language, and taking in the sights and smells of pseudo-Europe. It was great. Montrealians (?) are quite polite and kind. Not at all what I'm used to in any of the metro cities around here. I only garnered the evil eye when I tried to order an iced coffee in the midst of their heat wave. Apparently they don't do iced coffee.

I learned of recent research on anti-MS activity extracted from the mushroom Cordyceps, which is a well-known mushroom that's often taken for stamina and post-exercise tissue repair. I've considered taking the mushroom itself in pill form; will do more research to try to determine any risks regarding white blood cell counts or liver enzymes. We'll see.

Preparing for my grandpa's 90th birthday party later this summer. Should be a hoot, as long as we can keep from creating a Jerry Springer-style family feud over where the punch station should be set. Getting this family on the same page is like herding cats.

Speaking of the liver enzymes, while the possibility of going off injections looms, I've started to revisit the last-ditch idea of getting pregnant. I'm like 36 or 37 or something like that, and I'm pretty sure I'm not going to keep track from here on out, and it is really the last realistic time I'll put myself through the insane brain game of considering birthing anyone.

The plan for getting pregnant is about as complicated as doing federal taxes at this point, if you own 7 depressed properties and itemize about a hundred parking tickets, and if you prepare them in another language, like Japanese or something.. By the time I sit down to think of all the factors I'm tired and need a nap, or just want my blanky and a bottle. I feel both relieved not to have kids already, and desperate that I'm running out of time and don't have the money, health or resources to acquire children by any means. Not to mention the torture I get to inflict on my family each year by not providing grandchildren to carry on the family.

Not sure how this will pan out but if you've dealt with similar issues, give me a shout.

Must mention my old friend Emily, whose birthday just passed. She would have been 33 this year but passed away last summer. She would have been my peripheral support if I'd acquired children, and with her gone, the whole possibility seems, well, impossible. Besides my awesome husband, I don't know how much support I can tangibly count on from the rest of my gang, it seems like a lot of people need me more than they can give back. Anyway, I miss you terribly, Em.

Hope everyone is having a beautiful summer!

Spring 2013

Spring of 2013 has been smashing so far. My mom came for a visit. Her hair is super curly as it grows in post-chemo treatment. None of us know what to do with super-curly hair. She may as well have grown a third arm!

While its hard for me to see my mom, its always fun & exciting too. Since I didn't grow up with her around, I tend to get a little star struck. As a kid I always felt it took most of the summer for me to get comfortable being around her and then it would be time to leave.

We planted a flower garden that I'd been struggling with for the past couple years. I've finally learned that I need to do most of my rigorous garden work in April and May before it gets too hot to be out planting and digging for hours on end. So, this year I'll have a beautiful full grown garden for Spring and Summer! I'm trying a couple new plants like Portulaca and Straw Flower. Wish me luck.

Clementine Petunia, the puppy, is growing fast. She is a firecracker, full of energy and spunk, but she's also affectionate and snuggly. Harvey has grown into a good, adult Dobie. He's given up many of his annoying puppy behaviors (thank god!), and likes to show Clementine how to be a good dog.

I've got some unknowns coming ahead: my liver enzymes have started to creep up, and this will probably mean I'll have to stop my interferon treatments, at least the injections I've been taking. We'll see what the plan is in June and come up with a game plan then. I haven't had much in the way of accumulating symptoms, but certainly my weight gain has made me wonder if metabolism isn't on the decline.

My husband and I have a trip planned to Montreal early in the summer, and we're excited to get out and have some fun in a new and exciting city.

Hope you're having a great Spring too!

New Year's Corner

2012 was not an easy year for me. I lost one of my very best friends last summer. It was just a week after her 32nd birthday, and she was sick for only a few weeks before passing away. I really counted on her a lot, and I always imagined she would be around when we were little old ladies. We’d laugh and sip champagne, and rock in rocking chairs, and she’d sing tunes and play the ukulele, as she was prone. 

Having lost my grandmother the previous year, going through all of 2012 without her made it doubly hard. Holidays seemed rote and birthdays seemed a bit dull. My grandfather struggled with how to live life on his own, and we all hurt for him.

In the Fall, my mother was diagnosed with a pretty serious case of breast cancer, and since she's always lived what seems like light-years away from me, it was very worrisome to not be able to check in on her. The whole process of getting a major diagnosis is so disorienting, so utterly devastating, that it’s very challenging to know what that’s like and see someone I care about going through it. Its a very helpless feeling.

Sometimes when someone I care about says something accidentally rude or ignorant, or careless, that relates to my condition, I remind myself that I’m actually thankful that they don’t understand what its like to be living this stuff. The only way to understand is to have been there. Well, my mom has now been down a similar road. As always, it's a very isolating and unique journey for everyone, but so many of the twists and turns are familiar to those of us that have been down our own road.

I remember during my own diagnosis that I was so thankful, when all the options fell away and MS was staring me in the face, that it wasn’t a condition that required major surgery.  Granted, if the MS would be halted by something like that, I’d probably do it. My mom didn’t have the luxury of avoiding a grueling and exhausting treatment (or two). I’m not sure how she did it, but she’s come out the dark tunnel and is in the initial stage of remission, where they’re still watching her very carefully. And she’s still squinting from the light out here, but she’s out of that dark tunnel.

So, despite some major losses and pains, I made it through. And I’m fortunate to have a job, and a home, and a husband, and my pets. I’m acutely aware, actually, after a year like this, of these gifts in my life.

So 2012 crept into history finally, and shortly thereafter my husband and I adopted a new puppy, named Clemmy. She’s a lot of work, as puppies are bound to be. But she brings smiles and cuddles every day, which almost evens it out (ha!). 

More importantly, seeing Clemmy discover new things every day, learning how to navigate this big scary, fun world with new and innocent eyes, reminds me that there are more good things ahead in life. Even if I feel at times that I’ve lost so much, there could be a new and wonderful experience right around the corner.

Cheers to 2013!

Playing to My Strengths

Its harder for me to give up a behavior, pattern or coping mechanism than to start a new one.  I find myself fighting with myself, trying to change me, trying to stop doing this or that.

I had had a string of migraines starting. It had gone on for a few months, speckling my landscape with miserable moods, fatigue and pain. Although I have a pretty good attitude about things like this, it creeps up on me: I started to feel like I was having a hard time making plans to do things socially and that made me feel defeated, and afraid of how unpredictable it was all becoming. 

When I tried a medication that helped, I realized what a relief I felt by having an "out" and that made me realize how trapped I really had been feeling.  The medications are not something I want to pile on, since my liver needs to be able to process my interferon meds for MS and therefor doesn't need a bunch of other crap with which to deal.  So if I can find another way, I'll try it.

I live a pretty healthy life, with a few bad habits sprinkled in there, but I started thinking I might need to lock down all my fun in order to get this under control.  Then, my husband made me watch a documentary he really enjoyed called Fat, Sick and Nearly Dead (lovely, right?).  It was really a great film, not the dark and dismal piece I thought it would be. It was then that I decided to play to my strengths.

Instead of trying to overhaul all my bad habits and patterns, I added something: juicing.  I bought a juicer, and after a few combinations I found some that I really liked pretty well.  I found out from my local produce department how to get the least expensive, juice-rich organic veggies and fruits for juicing.

I started with a subtle modification of my diet for 4 weeks for cleansing:

1. 24oz* homemade fresh-pressed fruit & veg juice for breakfast
 *this is a lot of juice, don't expect to be able to afford to do this for very long!  But it helped fill me up while I was getting used to less fat and protein
*good combo: collard leaves, granny smith apples, lemons; or carrot, kale, lemon (organic only)

2. salad for lunch (lettuce, tomato, cucumber, fresh mozz, balsamic)

3. good well-rounded dinner like 2 small organic roast chicken thighs, fresh steamed veggies and brown rice.

4. 12oz  homemade fresh-pressed fruit & veg juice and about 10 dark chocolate-covered almonds for evening snack

5. I drank a lot of water

At times the juice was a bit difficult, but it was actually not that hard to stay on it. After about 3 weeks I craved juice daily.  It made me happy!

I had no more than one headache the whole 4 weeks, not even a full-fledged migraine. What a relief!

I kept up with a juice a day for several more weeks before tapering off due to travel and what-not.  I'm starting to feel some aches & pains reemerge.

I think I'll add back in some juice and see how it goes!

Whoa. 3 Years And Counting...!

I have to confess, I ran into log in problems on this site for a week or so, and exercising my temper, which could be attributed to my mother OR my father (and you can imagine what that means about me), I fled this blog for, well, 3 years actually.

I'm back, log in problem solved, for now, I guess.

So, what's been going on?  ... Everything! Life! Chaos! Turbulence! I'll try to summarize here:

Let's start with a good one: I bought a house. Key takeaways about that process: No one told me I needed to take off 2 weeks from work and sleep with my phone, with every piece of financial paperwork I've ever seen stacked around me in perfectly organized piles.  It was crazy.

I've lost some wonderful people who were essential to my happy life: my grandmother, and my very very good friend, one could easily say my best friend of the past 10 years, Emily White.  This one was recent, and unimaginable.  Both of these women were 2 of the best women I've ever known or could imagine.  And they were imperfect in just the right ways.  I miss them.

Almost forgot, I had another minor episode of MS soon after my last post, during that summer of 2009.  It lasted a few days and freaked me out a bunch, and I did a steroid drip treatment for it.  That was an intense couple weeks.  If you ever do that treatment, prepare your friends and family for your mood swings and zaniness.  Heck, prepare your mailman and your local gas station attendant while you're at it because it is going to be an interesting trip, at least it was for me.  It cannot be described.

I healed, and recovered. Since then I've regained a lot of my balance and a bit more stamina that I had lost since my first episode, but barely noticed (or chose to ignore, whatever) until it returned.  I had a phase of getting migraines and found a helpful medication to take as needed. When the migraines started becoming more and more frequent, running a couple days at a time for a while, I started juicing veggies and fruits daily.  It was remarkably effective for me (to the tune of taking only one migraine pill in the last 4 months).  I keep up with the juicing several times per week, and will probably do a cleanse with juicing (I never completely fast, mind you, that's a no-no) soon too.

What else? ... Oh, my husband and I adopted a dog.  He's huge and extremely time-consuming, and a great joy to us, literally complicating our lives right out from under us.  I've traveled to new states. I've survived an earthquake. My mom was diagnosed with breast cancer and took up arms against it.  She's finishing a long round of chemo now and will embark on a journey through radiation soon.  She's unbelievably strong, and we've found a new way to stay in touch like we never have before: texting.  My sister fell in love with a boy.  My sibling-in-laws adopted my magical little niece. 

Many triumphs, many failures. A lot of growing up, a lot of searching. 

I promise I'll keep up better, everyone.  I hoped this blog would be helpful to MS people, and others who were lost and needed hope, and just a bit of direction out of the darkness, a bit of empowerment.  It certainly can't do that if disappear!  So I won't.  But just in case I do, expect that its because I'm out living this crazy life with the rest of you.

;)

1 year and counting...

Well past a year since my first attack and I'm going strong. This past month was nearly pain-free and full of some awesome times, including my 1 year wedding anniversary. I'm planning to go out of the country in 6 months on a vacation somewhere but haven't decided exactly where yet.

My favorite supplements right now:
omega 3 fish oils, daily
vitamin D, daily
turmeric & bromelain, daily
methylcobalamin B12, daily
Phosphatidyl serine (PS100), daily
umcka, as needed
sovereign silver, as needed
immunity takecare, as needed