A Bit of Reluctant Gratitude

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Now that I’m done with my tantrum, or at least for this minute because it seems to keep rearing it’s ugly head, I do have a few thinks I’m grateful for.  And these are the things that I really have to keep reminding myself of.  Not that my situation gives warrant to reminders of gratitude, we all have to stop to count our blessings at anytime or any life situation.  However, when facing a diagnosis that is permanent, as in, for the rest of your life, it makes your thoughts change and your perceptions change.  No matter how bad life is there is always something positive if you look hard enough and open your heart enough.

First, I am so so thankful for my supportive family, my husband who is still on this crazy new change of diet with me and my kids who are willing to try any meal I put on the table.  My extended family who has been sensitive and offers much needed words of comfort and kindness.  My mother who reminds me that I am strong and can do this, who has experience with a life changing diagnosis as well.

Living in southern California is a plus.  Lots of restaurants who have gluten free, dairy free, vegan options.  Great supermarkets that offer many choices to meet the needs of all dietary restrictions.  Love that I can go to a pastry counter at Jimbo’s or Wholefoods and find some sweet treat that I can have, makes me feel not so left out.  Lots of organic and non-GMO food choices as well.

Being able to plant and grow my own vegetables even though its October!  Just planted garlic, onions, shallots, beets, radishes and herbs.  Still working on filling the beds but it’s a great start.  Again, love living in So Cal! Losing weight!! Who doesn’t love that?  However, now that I’ve found so many great food options my weight loss has slowed down.

Not having headaches all the time.  So weird, I use to have headaches all the time, have my whole life.  Now I have them just about once a month and I think it has to do with that time of month.  So I am learning new things about my body that I just didn’t pay attention to before.

The internet!!  This is a plus and a negative thing.  I’ve been able to learn so much about MS through the internet.  So much information out there to help me get this thing figured  out.   But when I start to do to much research then I get sad because of all the stories of struggle from other MS sufferers.

Bloggers!  Bloggers who have opened up and shared there stories and there talents.  Meaning, cooking talents.  So many great recipes on line that gives someone like me hope.  Although, as I sit here with Ina Garten cooking up some seriously fabulous looking French food on the TV, I’m inspired to try those recipes only tweaking them for my needs.  And I’m only able to think this way because of the great trail blazers of gluten free cooking bloggers.

Twitters!  Strange, I know, but there have been some very supportive MSer’s  who have given me support through twitter. Social media, who knew!

 

D

 


My MS Rant

 

 

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Just a warning and an apology up front.  I HATE MS!!  HATE IT!!  It’s all I can think about.  It has consumed me.  It fills every thought every day and every night.  MS SUCKS!!  I have no hobbies anymore because this has become my hobby.  Every new muscle twitch or every new tingle makes me wonder if it’s going to be a flare up.  I feel like a walking time bomb waiting to go off in the form of an exacerbation or an episode.  I can’t stand it!!  I’m constantly wondering if I ate the wrong thing or if I got too stressed or am I taking the right supplements.  It’s making me crazy.  I can’t enjoy life because this is my life.  It pisses me off that this is my new life.  It pisses me off that I have to be my own doctor, that I have to do the research to find out what’s good for me and what’s bad.  Every ‘MS Diet’ claims to be the one that can put this in ‘remission’ to get rid of my lesions, and they are all different.  So WTF?  Which one??  Going out to eat is a joke.  Yea, there are things on the menu that I can have but still, really, grilled fish and veggies, always. BORING!  God this sucks.  I love food, I love to try new food.  I enjoy food,  and now??  Veggies all the time, UGH!  Yea, I like veggies but ALL THE TIME???

It’s a constant battle to be positive, to stay optimistic, to be open to this new way of being.  It in itself is stressful.  It’s stressful to constantly fight this battle.  What’s really stressful is reading what other people are going through and wondering how much longer before that happens to me.  What day will I wake up and not be able to walk or not be able see?   What will my future hold?  There’s no cause and no cure, so I don’t know if what I’m doing will even help.  I know that I have to try everything I can that might work.  And I will.  I will keep trying and I will stay positive and I will fight this stupid, ugly, mean, disease.  But that doesn’t mean I have to like it!!

 

D


My New Normal

 

 

 

It all started back in April.  I woke up with my feet tingling as though they had fallen asleep and were trying to get the feeling back.  This lasted for two weeks straight so I thought I should get it checked out.  It was so weird and I was embarrassed to go to the doctor for just this.  Well the doctor couldn’t find anything unusual so he referred me to a neurologist.  I booked my appointment but had to wait two months, and in this time my symptoms changed.  My feet were fine but now my legs were tingling after I’d exercise.  So weird, I would be fine but after I would exercise or walk fast across the parking lot my legs would tingle so bad, like all my nerves were freakin out!

The neurologist put me through some tests in his office and everything seemed fine so he booked me for an MRI on my mid-spine to see if there was any inflammation and also ordered a bunch of blood tests.  Everything came back fine, he didn’t see any inflammation and the blood tests were normal, so the next step or ‘plan B’ was to look at my brain.  I went in for an MRI on my brain to see what’s going on there.  Well about two hours after my MRI I get a call from the neurologist to come in for a consult because they found some ‘abnormalities’ – duh,  I could have told him that!  Any way, at that point I already knew what it was.  I had been doing some research on my own about what might cause the tingling in my legs and I had found one person on a forum with the same exact symptoms I had and that’s when I knew.  So when I got the call I tried to remain calm but it’s a scary thing to think about and to wait for.

Thank god I have the best husband, he came with me for support and I was so glad he was there.  The doctor showed us the MRI, both of them, and said that the ‘expert’ did find inflammation on my spine and that was the cause of the tingling in my legs.  And then he showed us the ‘abnormalities’ on my brain, about 15 small white spots, or lesions, that is the indicator for MS.  So when he said the words, ‘you have MS’ it wasn’t that I was shocked it was just now I had a ‘label’ I had a disease, a condition, this is what I’m going to be known for, my life would never be the same, that is the part that is most disturbing.

I’ve always been healthy, I’m never sick, it just doesn’t make sense that I would get this.  But then again, this is a disease that makes no sense.  There is no known cause and no known cure.  I have to be my own doctor, plan my own course of treatment, because they just don’t know what to do for MS.  Sure there are drugs that I could take to help and there are diets that I can go on, but there is no definite in any of it.  All I can do is consult the internet and the specialists and come up with my own plan of treatment.

So for now I’m not taking any medication and I’m making some lifestyle changes.  I’ve given up coffee, dairy, gluten, red meat, sugar, alcohol, and legumes.  From everything I’ve read the dietary changes seem to offer the most positive results.  I’ve given up volunteering and trying to reduce stress as much as possible.  Trying to exercise more and getting more sleep.  The hardest thing of all is just trying to figure out what to eat and what to feed the family.  My sweet hubby is trying to eat the same diet as I am in support of my diagnosis.  I ask him ‘why, why would anyone volunteer to eat like this?’  It sucks!  Try going to Disneyland or eating at a restaurant when you can’t have anything on the menu.  But I’m committed to staying healthy and not letting this get the best of me.

I haven’t told too many people, it’s hard to call someone and say ‘guess what I have’ so I just don’t.  It’s not a secret but I don’t want people to feel sorry for me or assume that next year I’ll be in a wheelchair or that my future will be shortened or that I’ll end up disabled   No one knows what their future holds so I will just take this a day at a time and like I told the doctor, it is what it is.  So I’m not going to feel sorry for myself, although it’s hard not too, but being positive and being proactive, and having a great support team around me is what’s going to get me through this.  I just have to accept that I now have a new normal.

 

D

 


Sidney at Poway Park

 

Working on editing and posing with Sid.  She is so beautiful and fun to be around, it’s easy to get great photos.  I’m also working on updating my website and facebook page.  Baby steps for sure, but fun to keep learning and moving forward with photography.

 

 


Hiking the Pacific Crest Trail

The Pacific Crest Trail is a trail that runs from the US Mexican border to the Canadian border.  It takes four to five months to hike, hiking anywhere from 15-25 miles a day and you have to pack everything you need.   This is what my son is doing right now.  On the trail somewhere with sore, blistered feet and happier than he’s ever been.

He’s been planning this for months, done tons of research on the right gear to have.  Everything has to be the lightest, and most durable.  He hiked in the winter and in the summer.  Hiked alone, hiked at night, hiked at night alone.  Challenged himself and scared me to death.  But it is his thing!  He loves the outdoors.  Loves hiking, mountain climbing, skiing, mountain biking, all kinds of outdoor sports.  So this just made sense for him.

 

 

He is an amazing, inspiring, beautiful soul, and it makes my heart stop when I think of him out on that trail alone.  There are times when I wish it were me out there, to have the courage to walk away from all my comforts, I might be a bit envious of the freedom to follow a dream like this.  There are times when I want to find him and walk with him to make sure he is ok  – no matter how old they are you still want to take care of them.  But knowing he is prepared and knowing that he is living his dream makes me proud.  What a great feeling to be inspired by the courage and strength of your child!

Although he is not child, he is a grown man and he’s out there having the adventure of a lifetime.  I see great things for him in his future.  But for right now I imagine that the only thing he’s thinking of is his next step, his next meal,  if he has enough water and how far away the next stop will be.

 

 

But to watch him walk away and start this adventure was just – tough.

D