Neuro or GP who do you call first?

I have a doctor appointment in a couple of hours with my GP, general practioner.  He won't refill my Cymbalta script unless I see him.  I really don't like going to the doctor for this kind of thing.  I have nothing personal against my GP, he's great and all, but sometimes I feel like I'm wasting my time.  After 24 years I still never know if I should run everything through Rock Star-my Neuro- or call the GP first.  For instance, I know that UTI or bladder infection is very common in many of us with Multiple Sclerosis.  Sometimes the symptoms are not as easy for us to recognize due to loss or diminished sensations  in the area.  If I do suspect something because of say, frequent urination, do I call GP or Neurologist?  I hate to admit it, but I usually just buy a gallon of cranberry juice and hope for the best instead of calling either.

I honestly can't even remember why I talked to the GP about ant-depressents.  I had been on Zoloft and didn't feel like it was helping any longer and he suggested I try Cymbalta.  Side note here: I hate Cymbalta! If I miss one dose I experience bone-shaking withdrawals within hours.  I also don't think it keeps me as steady as it should.  I will speak with him about this today.

My question for you all is, who do you call first Neuro or GP?  How do you know?

Christmas fatigue

I know  I have written about Multiple Sclerosis fatigue in the past, but with the holiday season bearing down on us like a hungry bear in stream full of salmon, yeah that's how I think of the holidays sometimes, it might be good to revisit the subject.  The holidays can bring out the best and worst in all of us.  Add bone weary fatigue to the mix of gift shopping, feast making, and cookie baking, can make for a very stressful and disappointing time of the year.  I know for myself I never feel like I am doing enough to make magical memories for my family.  Every year I have visions of turning my home into a Christmas explosion of merriment and sparkle.  I imagine baking loads and loads of cookies to give to our neighbors and friends in sweetly decorated boxes.

When I do venture down to the basement,  just looking at the boxes of decorations makes me run/limp/crawl to the couch for a nap.  Then the thought of baking cookies rears its ugly head as a reality and no longer a confection fantasy.  I get overwhelmed with the amount of ingredients I need and don't have to make traditional Kolachke, Polish cookies, or Barazek, Lebanese Sesame cookies, and I have to have Anise cookies in the mix too.  I have a very culturally diverse family.  Speaking of overwhelmed, trying to find gifts for everyone is crazy hard for a person who hates to drive. I also have crowd anxiety. The whole shop til you drop experience is tiring and a little depressing.  The holidays become especially disheartening when visiting with relatives who like to use the get togethers as a drunkfest- free- for- all.

This year I plan to do things a little differently.   Well, actually a lot differently.  My girls love the holidays.  I plan to let them have free reign with the decorating this year.  I have faith that they will make the house look great. Why not let them show off what they think Christmas decorations should look like to them?  We will do it one room at a time so no one gets overwhelmed and cranky.  Do you know that teen girls can be a little (a lot) snarky when they are cranky? Surprising, I know.

Cookies will be  the pre-made sugar cookies I can get at our local GFC.  GFC is a wholesale food store that is open to the public.  The Husband uses them for work all the time.  The cookies are pre-cut into holiday shapes and taste great.  All we have to do is bake and decorate.  They even have pre-cut gingerbread men!

Gifts are always tough for me because I agonize over choosing the perfect one for everybody. I love to make things, but not everyone appreciates the homemade Christmas gifts.  There are certain family members who only see the dollar signs and have to compare what they spent to what you gave.   Those people will be cut off.  Husband and I decided we were going to limit spending to our daughters and our parents this years.  It was becoming too much to buy for all the nieces, nephews, and the their kids.  We have never received a thank you from any of them and honestly when we see them only a handful of times throughout the year It feels like we are only handing them money for reason.

We normally to go to my parents house to visit with my brother and his kids for a couple quiet hours on Christmas Eve and then we visit the entire day of Christmas at Husband's mom's house.   It's crowded, uncomfortable and don't even think of eating until the entire clan arrives, which is never even close to being at the same time.  So what do people do when they can't eat? They drink.  A lot.  Then when someone shows up with a pie and no whipped cream (us) well then those people (us) ruined the entire day and everyone (us) can just "Fuck off" according to the hostess (Husbands Mom).  Classy right?  Oh and did I mention the alcohol soaked political lectures from Step-dad #4?  He gets all his information from hours in front of the TV watching nothing but Fox News.  Are you jealous yet?  This year Mom-in-law gets 2 hrs max and we are out of there.


I'm also not going to make my self crazy about what I can't do and just do what I can.  Spending time with my girls and husband is what matters most to me.  All the other stuff is just noise.  Even though my daughters are 17 and 15 years old they can still find the magic in the simple Christmas lights we put on the house.  They can find the joy in reliving memories as they pull out our old Christmas tree decorations.  They feel excitement wrapping gifts for each other that they know will be loved.   Through them I can love this season and let myself appreciate the little things. 

Changes and Decisions

This month has just flown by in a flurry of college applications for my Swimmer Girl and loads of "sign this so I can do that" for my Dancing Queen. I have to believe that the amount of paper work involved in my childrens` basic high school  education is solely responsible for the deforestation of entire tracks of land.  Even though It's been a major feat of organizational skill that I simply do not naturally possess, I have been able to keep up with it all pretty well, I think.  It's a big help that Swimmer Girl can drive now.  Both girls have joined the high school drama club and are hanging around together like the did when they were little.  Kinda cool I think, but of course I don't tell them that.  I find it crazy that things are changing so fast in their lives, but they are finding their way back to one another just the same.  When they were little they were inseperable and always called each other their best friends.  That started to change when Swimmer Girl turned ten.  The age when the "I hate you" hormones wake up and begin screaming through a girl's body.  Now at 17 and 15 they are actually civil and even nice to each other.

The husband and I have been having some issues lately, but we are working on them.  Mostly I think he's frustrated with work, and then dealing with my MS and anxiety is weighing on him.  I tried to find a therapist, but our insurance won't cover a therapist and Military One Source, who we used about four years ago, won't sign off on just me for free counseling because I am on Cymbalta and that is considered a medical session.  Seriously frustating.  I just wanted someone to talk to.  I have no friends I can talk things out with and I can't keep putting this stuff on my husband.  We celebrated 27 yrs together back in October and although he has been with me from the beginning with the MS, there is a little part of me that suspects he really doesn't get it.  I guess no one can unless they live it.

One big issue is that I have stopped taking my Rebif injections.  I simply cannot bring myself to poke myself with another effing syringe.  Husband thinks I am being very cavalier with my health and it makes him angry.  He believes strongly that if I don't take my injections and suffer a relapse it is my fault and inconveniences everyone.  I'm lost between "fuck you this is my life" and "you're right".  It's not like I am refusing medication all together.  I have been exploring and researching the oral meds available.  I have an appointment with my super star Neurologist, he rocks, at the the end of December.  I have told the husband I expect him to go with me and help me make this decision.  He's completely on board with going to my appointment.  Yay! I am concerned with the possible side effects and the fact that the orals really compromise my immune system.

Let's see anything else.  Oh yeah, I developed this crazy ass rash on my left arm and my checking account was hacked into for about $1000.00 of online purchases one of which was $125.00 for Birkenstock sandels. Really Birkenstocks?  More info on those exciting new developments to come.

me

This is me.  I am so lost in my own bubble I can hardly breath. It warps my vision of my self and my life. I cry and rail against it.  I beat my fist against the walls in silent frustration. I want to burst this bubble, but I am so afraid of the fall.

My world is changing so fast.  I want my children to stay and never leave. I don't want to be their Pooh Bear.

  I want my husband to love me like he did when we were young.  With passion and pride.  I want to know we can continue to grow and make our dreams come true.

I want dreams.  I want to be more than this existence.  I want to write my words and make the world feel something.

I'm paralyzed, frozen.

This is me reaching out.

RLS- Restless Leg Syndrom

RLS.  You know that feeling  at 2 a.m, when your legs decide "Hey let's get up right now and walk around the rest of the night!!!".  They are like that overly excited, annoying acquaintance who just loves to talk about everything. All. The.Time. So you do the equivalent of nodding and listening politely and get up pace to around for a few minutes maybe even a half an hour, get a drink of water go back to bed and BAM it starts again.  My legs are like " Oh, have I told you about my cat and all the tricks she can do?" I hate that! I know many of you do too.  It feels like a cross between a cramp and a twitch and can affect any of my muscles from the calves to upper thighs.

Over the years I have found a few things that have helped me.
Hydration:
I notice if I don't drink enough water throughout the day I have symptoms. *Pee alert* Do not however, try to get all your hydration in an hour before bed because then you will have a completely different reason for not sleeping.

Exercise:
When I haven't worked up a sweat during the day my legs are ready to run a marathon at night.  I know exercise may be hard for some folks, but try your best to do a little something everyday. 

Stretching:
I try to do some light leg stretches before bedtime. I have to shooo the dogs away from me during stretch time because I feel they are always criticizing my downward dog. 

Even if I have done all these things I sometimes get the twitchies and I have few tricks for those times too.

Long Socks:
For a long time I was wearing my husband's Air Force issued socks, but he got mad when I kept cutting the toes off. So. I bought a pair of compression socks that they sell at the pharmacy for diabetic patients.  They work wonders to calm my jumpy legs.  I cut the toes out because personally I don't like my toes being trapped and squished together.  The socks still work fine.

Warm Bath:
When I'm desperate to sleep the sound of running bath water at 2 a.m. is the best sound in the world to me.  I run a warm, not hot, bath and soak for at least 30 minutes.  I'll stretch and massage the calf muscles while I'm in there.  It feels glorious.

Heating Pad:
If I'm not able to get in the bath due to mobility I keep a heating pad near the bed. I put it on low heat and put it under my legs. I have a pad that will automatically shut off after 30 minutes.  That's a good idea for safety if I fall asleep.

When I have to have Solumedrol treatments, it's inevitable that RLS will be along for the joy ride the steroids are taking my body on.  I can do all these little tricks of mine and it just won't stop, so I'll have to go the dreaded medication route. I hate putting more crap in my stystem than I already do, but if I want to sleep and not become some crazed, roided up, MommyMonster, I go for the sleeping pills. I ask my Doc for a 5 day supply of Ambien.  I don't know why but I have found medications like Nyquil do not work and actually make the symptoms of my RLS worse.I have tried Baclofen, but again I don't like to take too many pills and it left me feeling a little hazy during the day.

There are many more "home remedies" on the web that I haven't tried, a bar of soap at the foot of your bed, Vicks on your feet, magnesium supplements, the list goes on and on really.  I just know the ones I wrote about work for me.  I hope you find something that works for you too.  If not we can always go for a 2 a.m. run together.

M.S. and Depression

In light of the tragic news of Robin Williams passing last week I wanted to write on depression and Multiple Sclerosis. Depression is a common symptom of M.S. I have been having a hard time though because I really didn't know how to write about the subject without coming off as some kind of expert, which I'm not.  I don't want to say here's what I have been through and I came through it swimmingly, because I didn't. I only know my experience.  So here goes.......

When people ask me how I'm doing, like many people, I always reply "fine", or "good days and bad days, but I'm doing good".  Those are my default answers, for my friends, family and doctor.  I don't think they want to know I really feel.  If  were to be  honest I'd say,

 "well, today I'm feeling an overwhelming sense of dread and self loathing, but It's better than the anxiety attack I had two days ago when I took the girls across town to the mall for school shopping"

 " I pretty much hurt everywhere and live on ibuprofen and coffee."

 "I have been crying since I dropped the girls at school today, and I don't really know why"

 "I'm lonely"

"I feel like a failure"

"No one really cares and I don't blame them I don't deserve it"

"I wish I could just live by myself so I don't infect my others with my mood"

"I'm live my life in a haze, never really seeing anything clearly"

"I'm a terrible Ma.  My girls deserve someone so much better"

"I'm a burden and it will just get worse"

"I'm stupid"

"I can't do anything right"

"I feel like someone dropped me in a pit and every time   I try to crawl out of it I lose my grip and bring more dirt down on myself"
 
There are so many more statements I could share, but just thinking about them puts tears in my eyes.  I'm angry.  I feel like my body has completely betrayed me.  I run, I eat fairly well, but I just cannot seem to get any control over my body and brain. Control.  So much stems from that one word.  I feel like I lost control he day I was diagnosed twenty three years ago,  and I have been scratching and clawing to get a little bit back everyday since then.   I want so badly to have control over myself that I end up having control over nothing. I go about my life everyday, all the while this dialogue of negativity and self hate runs in the back of mind.  Sometimes it's just a mosquito buzz,other times it's a raging screammo concert and my brain is the mosh pit.

While all this sounds very dire it's just a fact of my life and I have learned to live with it. I sometimes reach out when I feel like I'm slipping too far under, but I admit I don't that often because I know people have their own life dramas.  My husband doesn't really know what to do with me during these episodes.  He claims to never have had any of these thoughts or feelings.  I'm jealous.   Makes me feel like I'm less in his eyes because I can't snap out of it.   I take my Cymbalta religiously every day and wonder what I would be like if I were not taking an anti-depressant.   I have tried meditation, but my mind just spins too fast to really slow it down enough.  Running works like meditation for me. I look forward to my girls getting home from school and Keith coming home from work because then I can immerse myself in their days.  I don't have to think about me.  Writing this blog helps greatly.  It may not be written eloquently, but it's written from heart and and is a purge for my soul.

I know reading over this it doesn't sound like I have things under control, but I do to an extent.  In my darkest days I know in my heart what would happen to my family if I were to give in and hurt myself and I can not do that to them.  I won't do that to them.  I will keep going on and doing my best as a wife and mother.  I will give them all the love that I want to give myself.  There is always going to be colder weather for me, but sometimes the sun shines through just enough to warm me.

I have included a link to National M.S. society's page about depression if you want a more technical take on it.  I don't know if I have helped anyone, but at least you know you're not alone.  Maybe hearing my words echoing your own with prompt you to seek help and guidance.


http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Depression

I want to run!

I'm feeling pretty bummed today.  The one thing that makes me feel normal and good about myself has been causing  me a lot of pain lately.  I can't hardly walk in the mornings because my right foot is killing me.  My right ankle is swollen and my heel hurts to touch.  I know it's probably Plantar Faciitis, but I haven't been to the doctor because I really hate going to the doctor.  I have no patience for ailments other than the Monster in my life.  Stupid? Yeppers, and now I'm paying for it.  I don't know why this is happening now after all these years.  My only guess is because I already had issues with slight foot drop in my right leg I have just made it worse somehow.  Whatever the cause the result is an extremely unhappy me.  I just want to feel good about myself and running was one thing I did that helped.  I get frustrated because I'm not as fast as other women my age and I haven't really lost any weight, but still I love it.  Sure I can go to the park and walk now that I "came out" to my running buddies there, but that's not what I want to do. I want to feel strong.  I want to feel healthy.

My real issue is I liked the routine of running.  Getting my clothes together in the morning, lacing up my shoes, driving to the park and running. Then I would get home jump in the shower and try to figure out the rest of my day. Now I am just floundering.  I don't know what to do with myself.  I can't concentrate on a project long enough to complete one.  My house is a mess and I don't know where to start so I just don't.  I am completely frustrated and overwhelmed.  I don't know what to do.  I feel like I just sit here on hold until I have to pick someone up from band, or take another one to work and then pick her up.  It's only 11:30, but I have to think about what to make for dinner already because of all the running the girls have to do. I want to scream.  I want to cry.  I want to run away.  I want to run away for just an hour.  I want to run.

Needle Fatigue

With all the needle pokes I have endured in my life the last 20 plus years you'd think I'd have some bad ass, freaking epic tattoo to show for them.  Instead I look like I have been attacked by an octopus with all the round welts all over my stomach, legs, and hips. They really aren't that bad, and eventually fade, but there is always a round, red mark somewhere on my body at any given day. Such is life in the body of an M.Ser.

Some days those little red marks bother me more than others. It's not really the welts, but the shots that cause them.  There are days when I just can't even look at the syringe without wanting to cry.  In my mind the needle swells to gigantic proportions and the little pin prick hurts more than labor.  Dramatic much? You bet. 

My Doc calls it needle fatigue.  Sometimes a person encounters a mental block for whatever reason when it comes to self injections. I have been through this many times over the years. How did I get over it?  Mostly guilt.  I'll end up having a relapse and feel bad that I didn't do everything I could to control the Monster.  Sometimes my Doc will use my kids against me and say I'm not being the best mother I can be if I don't take care of myself.  There is a look that my husband gets when he finds out I have been shirking my shots that will do it for me too.

I have also found that if I make it part of my bedtime ritual I won't be able to relax until the deed it done.  I'll lay out my shot and sharps bin, take a warm shower and inject away.  Then I'll reward myself with a glass of red wine.  Sometimes I'll treat myself to a mud mask or a paint my toe nails.  I will tell myself I can't read one line in whatever fantasy/mystery/scifi book I'm currently living vicariously through until I inject.  If I feel really anti-shot I'll throw a tweet out there and I know I can count on at least one of my fellow M.S. warriors to give me some encouragement.  That really helps a lot, because I know they are going through the same thing.

While all these tricks keep me on track for the most part,  much of keeping to my injection schedule is self control. I know there is some wiggle room with the schedule, but I tend to take it to a full on booty shaking twerking room place, and then before you know it I haven't done a shot in a week or two.  I just have to do it every Monday, Weds, and Friday with no deviations.

I came out of the M.S. Closet

Beautiful day here in Ohio today.  The husband and I went to the park and ran our usual three mile trail.  It felt so great to get out and stretch my legs and fill my lungs with fresh air.  It was not my easiest run, I was struggling to stay steady.  It was better than last week though.

I was less than mobile last week and didn't get any runs in.  I did however walk one and half miles one day.  It took me 51 minutes.  It was still an accomplishment for me because I actually went to the park and used my cane.  I have always been very reluctant to "just walk" in front of the regulars I see at the park.  Silly pride.  I'll be sure to bring it up in confession next time I go.  Going out there and bringing my cane was a big deal. This was the day I would come out of the MS closet to my fellow regular park goers. Of course I had the questions "what happened?"  "what did you do?".   I just took a deep breath and said "well, I have M.S. and sometimes I have bad days when my legs won't work properly and this is one of those days".  After the initial shock and exclamations of "you run so much though", "you're so young" and the ever popular "you don't look sick", I answered many questions, and I had to explain that the times they don't see me at the park are not because I'm on vacation.  Those are usually my off days and I was uncomfortable coming out with my cane.  I received so much love and encouragement.  I had an older runner that I always try to pace with, but never can, tell me I was his hero.  It was a humbling experience.

Once I got on the trail I took  the slow pace to really take in my surroundings.  I forgot how beautiful the sun on the pond looks.  I haven't really looked at the wildflowers in the fields in a long time.  The squirrels and chipmunks play chicken with me on my runs, but just strolling along they don't even pay me any mind.  I was able to forget my cane and drunken stride and take it all in. I was pretty whipped for the rest of the day after that.

While 51 minutes to walk one and a half miles may seem somewhat excessive to one person, it was time well spent to me.

Enjoying the view of the pond.

*Side note here.  I had a ear and eye infection and was running a low grade fever.  That is what caused my symptoms. I had what my neuro calls a pseudo-relapse.  Once I got the infection cleared my symptoms went away fairly quickly.  Remember to pay attention to your body and if any feels off call your doctor.  Some people may be able to "gut it out", but not us.  

Do you know when a relapse is coming on?

I had quite a melt down two days ago.  It was doozy.

 My life sucks, I have no friends, nobody cares about me, if I disappear right now no one would even notice until they run out of towels. I'm a horrible Ma because I didn't make dinner.  Everyone deserves better that me. Running is stupid.  My blog is stupid.  I'm stupid.  I shouldn't try to give people hope or advice because I suck.

You know that kind of poor me drivel complete with the torrent of tears coursing down my face and me wiping my nose on the front of my shirt.   Yeah, gross, but you get the picture.  The problem is those kinds of melt downs are a foreshadowing of a imminent relapse.   My husband pointed it out years ago that although I am an emotional person by nature, when I go into full-on life is hopeless, ugly cry mode then something is coming.  It usually happens when I have overdone and pushed myself beyond my limits.  Everything starts to hurt more.  My left shoulder blade is the worst.  My family hate when I start to say my shoulder aches because they know they will all be hit up to rub it.  When I say rub it I mean stick your elbow on the spot until I bruise.  The everyday noises of TV and conversation make me feel edgy.  The fatigue becomes crippling.  My symptoms don't always end in relapse. If I slow down and keep myself cool and stress free I can sometimes head it off.  My issue is that  I don't always listen to my body or my husband.

I am hoping this coming week I can stave off a major relapse.  Swimmer Girl has a swim meet this weekend a few hours away and I am not going.  It makes me sad, but my husband is going.   Honestly I think they need to spend some time together anyhow.  She's sixteen and knows soooooooo much more than he does.  Oy, that is another blog. I'm just going to rest.  I also noticed my diet needs some tweeking.  Too much sugar and simple carbs tend to do an number on my system and exaggerate my symptoms.  I can't help it though, who can walk past a bag of peppermint patties and not want to "taste the sensation".  It will be back to swiss chard, and kale for me.  They have very strong anti-inflammatory properties. Combine with steamed or grilled fish and you have a filling and yummy meal.  I have been up to my ears in zucchini so I chop one up and toss in, super yums.


Are there symptoms that you have, that tell you to slow down or a relapse is coming?
Do you always listen to your body?
 Do you find that diet plays a part in managing your symptoms?

Because M.S. can't stop me

I finally put this on my car.  I had it made about six months ago after I ran my very half marathon.  I never put it on the car.  I put it in on hanging inbox, and looked at it everyday, but never put it on the car.  

I'm not shy about talking about my M.S., but putting this on my car is an advertisement in a way.  I wasn't ready to deal  with being that open about my diagnosis.  I also didn't want to come off as some uber motivational person who can "do anything she sets her mind to and you should to", because that is not me. I do want people to know M.S. doesn't have to stop you from doing things.  It may alter how you go about achieving them, but it shouldn't be the reason you don't even try.   I wanted to try and see if I could do it so I did.  Will I ever run another half marathon?  Probably not, but not because of M.S., because I just really didn't enjoy the training process.  The constant worry that I was going to have relapse was always in the back of my mind.  It was simply to much pressure for me.  I love to run shorter races, 5k, 10k, and I will stick with those.

Multiple Sclerosis can't stop me from living my life.  I hope it doesn't stop you either.

exhusted....

Fatigue is a big symptom for those of us with Multiple Sclerosis.  In my opinion it can be as debilitating as not being able to walk or see properly.  People don't always understand when you tell them "I'm tired".  They often reply, "Me too" or "yeah, I didn't sleep well last either last night"  I for one do not want to come off as a drama queen and say "no, I mean I know I just got up an hour ago, after a full 10hrs of sleep,  but I need to go back to bed before I fall on my face, but the thought of dragging my body the 20 feet to my bed makes me want to curl up into a ball and cry."

I only have so much energy and when I run in the morning I use up most of my allotment in those 3-5 miles. Then the rest of my day is shot for the most part. I have to really pick and choose my projects
I hate being tired. I have stuff to do you know.  I mean come on, I don't work so my house should be pristine.  It's not.  I should be sewing, or painting, or cleaning something, but I right now I can't even think about getting out of this chair to get a glass of water.  Seriously kicking myself right now for not teaching my dogs how to use the automatic water/ice dispenser on the fridge.

It's not just the physical aspect of fatigue that gets to me.  I am so fuzzy in the brain I have a hard time reading for any length of time because my comprehension skills are nil.  God forbid I have to pick someone up from somewhere at a certain time. Wow that was top notch writing right there. Brain fuzz.  Just listening to my daughters talk about their day wears me out, never mind actually participating in the conversation.  "Wait, you mean I have two kids? Oh right, right..." 

I know people say "take a nap".  I hate naps. "WHAT?" you say. "Who hates naps?",you ask incredulously.  Me. I'll say it again. I. Hate. Naps.  I always feel like a schlub  napping when I know my husband is at work busting his cute little tush.  I have one job, take care of the house. When I'm napping I'm not doing dishes, laundry, and that sweeper doesn't run itself.  Damn, now I'm kicking myself for not getting a Roomba.   

I tend to have varying degrees of fatigue.  I'm not always completely useless for days on end, but I always have to plan my energy expenditure very carefully.  It's very frustrating to me because I would love to be a little more spontaneous, but spontaneity takes energy.  Maybe I should just give myself a break, teach the dogs how to use the water dispenser, buy a Roomba and take a nap.

23 years ago this week

This week marks a turning point in my life.  It is not a birthday to be celebrated,  although one could argue it helped usher in the birth of the adult I was to become.  It is not an anniversary to be congratulated for.  This week is more like the remembrance of a loved one passed on.
Twenty three years ago this week I was diagnosed with Multiple Sclerosis.

I was twenty years old and living with my boyfriend, now husband, and completely overwhelmed with a diagnosis for a disease that I had no idea what it even was. One day I was having a great time partying with friends, swimming and boating on the lake and the next day I was completely blind in my right eye.  What the Hell?  After what felt like a million tests, MRIs, spinal tap, weird electrode thingy-ma-jobbies taped to my head, and blood tests, I sat  in my doctors office and he said "You have Multiple Sclerosis"  He might as well have said "you have yadayadayada" because that is what my twenty year old brain heard.

Needless to say twenty three years later, I now know all to well what Multiple Sclerosis is what it has meant to live with this diagnosis.  Live is just what I did and continue to do.  Sure I had some bumps in the road during this journey, but who hasn't. I have had to learn how to deal with doctors and other professionals to become my own best advocate and fight for the care I deserve. I became stronger than I could ever imagine. I had epic meltdowns. I remember one very specific hospital stay early in my diagnosis. Around 3a.m I was on the "steroid march of anger" (more like limp of the gimp to be honest) to the nurses station with my hospital gown all flapping in the wind because they were going to take "THIS FUCKING IV OUT OF MY ARM RIGHT NOW!!!!!!"  "I am NOT doing this push ever again". Of course I would find myself back in the hospital many times after that. I fired my first Neurologist because every time I walked into his office he acted like I was new patient and had no idea who I was after 8 years. On the day of his dismissal he left me sitting in his office and refused to see me, unable to walk, pee, or see out of my right eye because there was an insurance change that his office personnel did not know how to handle. I have gone through many types of medications and endured countless side effects.  I have been depressed, angry, hateful, and wildly jealous of "healthy" people.

 On the flip side I have been able to have some pretty great things happen in my life, like marrying my high school sweet heart and having two wonderful daughters. I run! Not fast or pretty or everyday, sometimes not even every week, but I can still do it and I am proud that I can. I may not have been able to finish my Horticulture degree due to M.S. years ago, but the knowledge I aquired is with me forever. I have a beautiful yard with gardens and loads of wildlife. It gets weedy sometimes because I don't have to energy to clean it up, but I planted everything myself and it flourishes.  I wish I had planned for the time that I had to stop working.  Being "retired" at only forty three years old has not been easy on my ego or pocket book. That part is a work in progress for sure.

 This journey has not been easy, and I am not going to sugar coat my life because it is still very hard sometimes,  but I found a way to make it my own and live my life the way I wanted.  My hope for anyone reading this is that you will see M.S. is a diagnosis that can change your life, but in the end you are still the one in charge. Please don't give into the despair you will inevitably feel some days.  It can get better.

Did not lose my runnners card

I ran my personal best 32.23 this morning and it felt fan-freaking-tastic! Here are a few things I learned about myself today at the Starr Spangled 5k race this morning.

 There is a group of ladies that run all the local races and we call them the "skirt girls". They wear these tiny little matching skirt outfits coordinated with the event. Full  makeup that never melts.  They never seem to sweat.  They "glow".  All the guys go completely gaga over them. They are gorgeous, and they are fast.  I hate them.  No, not really.  I say I hate them, but secretly I want to be a "skirt girl".

 I am much more competitive than I ever realized. I also hold on to stuff for waaaaayyyyy to long.  I saw my grade school nemesis, arch enemy, frenemy whatever you call her I wanted to beat her.  She was the girl who was always one step ahead of me in school.  In grade school everything we did was in alphabetical order.  Lines to go to the bathroom, lunch lines, who got to read first in class were always  done in alphabetical order. Our last names were similar hers started with BR and mine was BU so even when we were in line she was ahead of me. Her mom was the Room Mom every year.  Her older sister was the lunch monitor. My cousins/brothers were trouble makers and the only times my parents were at school were to meet with the principle. High school was much the same and now our kids go to school together.  I wanted to beat her bad.  I did not care about personal best or having a good time I wanted to beat this chick.  I kept scanning the crowd to make sure she didn't pass me.  I felt awesome because I never saw her pass me and I was pretty sure she didn't queue in the front.  I crossed the finish line feeling awesome.  Then I found out she didn't even run! Haha. Motivation, insanity, whatever you call it I got across the finish line happy.

I don't mind coming in after my husband because I always have a cheering section waiting for me at the finish line.

I love it when my husband passes by me during an out and back race and we high five. It's romantic.  I know, barf, right?

I always pick one person/victim ahead of me that I plan to pass, but never do. So frustrating because for whatever reason I can never seem to turn it on enough to actually pass the person/victim.  I guess it's enough to keep me going and pushing through, I learned to accept it.

I am the lone person you see that never seems to be in a pack of runners.  It's just me myself and I out there in the dead zone between the runner pack and walker pack.

The most bizarre things pop in my head when I'm really in the zone.  "Can I get swimmer's ear from sweat?".

I really love to run.  I did not lose my runners card after all.

Disney World Adventure

First off I want to say sorry for being MIA for the last month or so.  Loads of stuff going on. My oldest if officially a senior in high school.  Yikes! The fourteen year old is now a freshman in high school.  Both of my girls in the same school. That is a whole blog in itself.  The fourteen year old had an opportunity to dance in Downtown Disney at Disney World in Florida this month.

WARNING: Proud dance mom major brag moment coming up. You may skip this and move on to the next section if you have an aversion to a loving mother who is super proud of her daughter. She was FAN-FREAKING-TASTIC!!!! She hit all her leaps including a tricky axle and just glowed on stage.

This pic of her is courtesy of an awesome dance mom named Jen,  without whom I would have nothing but crappy cell phone pics of all my daughter's major dance events.

Ok enough of that and on to the meat of this new post.  Actually I wanted to talk about my vacation to Disney World.  I'm sure many of you think "what kind of nut job with M.S. goes to Disney World in Florida in JUNE?". Well, I think I made that pretty clear.  Trust me I was plenty worried about the trip to Florida in June.  It was going to be hot.  I do not do well in the heat.  Add the fact that this is also a big event for my daughter, we had to make sure all her costumes were in order, and be where she had to be on time, it was stressful.  I do not do well with stress. Those two factors were enough for me to have anxiety about this trip.  In the end we had a fabulous 7 day vacation with some planning.

My daughter was also scheduled to dance in some workshops with a choreographer at Epcot Center one day and the show was the next day, so the planning for that was pretty tight.  We made sure she had everything packed in large baggies marked with each dance and day.  Done.

Because is was so hot down there we had to make sure the dancers didnt get too overheated.  I packed some instant cold packs for her, and thought they would work for me too.  They did.   I activated two packs and put them in a cinch pack that I carried on my back with bottles of frozen water.  It worked great, and bonus the sunscreen I put in the backpack was also cool whenever I had to reapply.  I drank loads of water though out the day when I was at the parks, and could even score ice in a cup if I needed it from the vendors.  Disney is so cool like that.

 The big thing we did during this trip was not to try to do everything.  There is always the temptation to try and experience every square inch of the park no matter what. That just leaves me exhausted and ripe for a relapse.  We all chose one or two things we really wanted to do and then took it from there.  We stayed at The Shades of Green Military Resort and let me tell you it was the best decision we made.  There was bus transportation to every place we needed or wanted to be.  Big stress reliever right there.  We also bought the meal plan so we had breakfast and dinner everyday.  It kept us from overextending ourselves.  We were able to go back to the room and relax.  I also made sure I could stay in the shade or air conditioning as much as possible.

I like to think of this as a @Chronicles of Riddick moment, stay close to the wall, out of the sun. "Kira get your ass in gear!" Sorry, I love that movie.

We have been home for a few days now and so far so good.  I feel a little weepy, but that could just be from the fact that is so much change going on right now.  I don't do well with change.  That will be a new post.

I guess the point of this is not to be afraid to do something fun and memorable just because it might cause a relapse.  If you plan well and do all the right things, you may still end up with an exacerbation anyhow.  But really, would you rather have a fun idea or relapse with a great memory?  I know what I chose.

Losing my "runner card"

I think I may be losing my "runner card" soon. I haven't run in a week and a half and just don't have the motivation to. I have  been trying to plug along for the last few years, even running a half in Nov., but I just don't have the energy anymore. It makes me really sad. My husband says I should just go out and walk, but- and this is really childish I know- I feel embarrassed that I had to stop running and don't want all my "regulars" on the trails to see me. Running always made me feel strong. Stronger than the M.S. and now I just feel defeated.

I know I should be thankful for the ability I had to run. I know that many can not even walk with out assistance or at all. I know when one door closes another opens.  I know I should be proud for trying all these years. I know all these things, but it doesn't stop me from feeling a great amount of loss.

I don't mean to sound dire, but right now I really don't know what to do with myself.

A self indulgent pity party

Things change so quickly.  That is what people say all the time. I'm starting to think things change very slowly, but we just don't notice until the last minute. Sometimes we just ignore things until we can't anymore.  That is how I have been feeling lately.
My oldest daughter will be a senio in high school and my youngest a freshman.  My life has revolved around their activities for so long it just became my reality. I liked it.  All the hours spent driving to swim meets and practices.  The many hours sitting in the dance studio, and  attending competitions. I grumbled sometimes, O.K. many times, but I wouldn't trade any of  those days for anything.

 Now we are looking at colleges for Swimmer Girl and the Dancing Queen will not be competing this coming year, as a matter of fact she will no longer be attending classes at her current studio.  Both girls will be in the school's drama club together and that is really cool to me, but also a little sad.  They don't need me as much anymore.  If I'm going to be completely honest, I'm going to miss my interactions with the dance moms at the studio.  Yes, I have complained and not always felt like I fit in with many, but I have made some connections I am going to miss.  Selfish, right?

Running has taken a turn for me too.  My foot drop issues have gotten worse and I experience a lot of pain after even a short run in my right foot.  I try to work it, but the stiffness and lack of flexibility is a problem.  My husband just ran the Glass City half marathon in April and did really well. I was very happy for him, but something I can't get out of my mind was that he ran with a co-worker and his wife, they all three stayed together and finished together.  I could have never done that.   When we ran the half marathon last November I ran by myself.  That was OK because I really didn't expect him to stay with me, but when I hear about him sticking with another woman for the whole race I get jealous, because I know I can't keep up.  Pathetic and childish I know, but that's me.

There are so many other things going on in my life that I can't go into here, but man I just need a break.  I just need to give myself a break. Instead I am literally sitting here typing with tears running down my face like some over-emotional nutball.  Maybe if I had some adult interactions once in a while instead of teen dramas I would feel better.  Who knows.

OK,  I'm done now.  Sorry for this pity party, but I think it is probably a precursor to something more.  I tend to become very emotional just before a MS relapse.  I don't know why, I just chalk it up to fatigue, but there could be a more scientific reason I'm sure.  I'll be fine I know just sometimes I need to vent. 

Running

Yesterday I told my husband I give up on running. I said I wasn't getting any better after all these years, I'm still fat, and I'm just too old to keep starting over after every M.S. relapse.  I said I was tired and just plain done. I claimed I found no joy in running anymore.  My tirade included the fact that I'm sick of being cold all the time and the entire state of Ohio.   I was on a roll.  I was going to pack up my running gear and chuck it all.  I even flipped over the medal I earned in November for finishing my first half marathon so I couldn't see it. Nope I wasn't going to run ever again. I know I look ridiculous when I run.  I slap my right foot down too hard and it turns in.  I'm sick of having to start all over again after a relapse keeps me off my feet for weeks at a time.  Chup listened to all of this and didn't say a word.  He just stood there and took it all in. I said this was really it this time.  He still stayed silent.  I said, "I mean it, I'm done."  No reply.   I let the matter drop and went on with the rest of my night.  We went to bed and out of nowhere he said "so you're going to the park tomorrow?" I said "no", much like a pouty five year old would.

I ran 3 miles today.

It was a hard three miles.  My legs felt heavy and of course my slappy-mcslapperson gait was very prominent.  My head was itchy and my bra felt too tight.  I felt sluggish. 

The thing is after the first mile none of that mattered.  I got into my groove and just let everything fall away.  My legs still felt heavy, but I just told myself it was because they were working so hard.  There were squirrels, bunnies and deer everywhere.  I started to feel like Snow White.  I didn't notice my slappy feet, and my bra was much more comfortable.  I finished my three miles in a respectable time, but most important is that I started the three miles.  Once I got home Chup called and said he knew I would do it and I should be proud because I'm not sitting on the couch feeling sorry for myself.  He has a point.

I hope everyone who reads this has something they can feel proud of doing.  It's important when you are in a situation like ours to have at least one thing we do for ourselves that has nothing to do with our illness.

Do you love comics?

Today I am not going to write about myself.  I want to help promote a great project from a fellow MSer.  Eric Cedric is a person who I connected with on Twitter.  He was recently diagnosed in December, yet continuing to carry on with life and the things he is passionate about.

The Dying Breed comic is one of those things.
"An old-school group of heroes diagnosed with terminal diseases fight a corporation poisoning the Earth with toxins."

The concept of the comic very relevant to the current political and social feelings of the world right now.  The diversity of the characters Eric Cedric has created, is both intriguing and forward thinking. 


 Please check out the Kickstarter page and if it touches you consider helping to get this published.


https://www.kickstarter.com/projects/fennec/the-dying-breed-old-school-heroes-running-out-of-t

Fatigue and M.S.

Fatigue is one of the most difficult aspects of multiple sclerosis to explain to someone.  When I say I am tired, I just leave it at that.  What I really mean is that I am bone weary drop any minute exhausted. I also mean "please don't expect me to make any decisions because I truly am not capable of deciding what to make for dinner tonight."

M.S. Fatigue creeps into all aspects of my life. The physical symptoms are obvious. I want to sleep more, my gait is a bit off,  my speech becomes stuttery, and I am just all together slower.  The mental part definitely affects my decision making capabilities, and my emotional control.

Being so tired also brings on the dreaded G word.  You know guilt.  When I can't keep up with the family and friends I feel bad.  Fatigue has affected my work life in the past. I could not always keep up with the tasks assigned to me.  I would make simple mistakes when placing orders with vendors or paying invoices.  The amount of work I actually missed was not excessive, but I always felt bad and unreliable when I did have to call off.  I would put a full day in at work and then come home and do nothing with my family.

Fatigue also affected my social life drastically.  I have mentioned in earlier posts that my daughters are very active.  I have a house to manage. I like to run when I can.  Something has to give and sadly it has been my social life. Even though I no longer work outside the home,  my life has to be regimented and scheduled or I lose track of things.  Trying to squeeze in coffee or lunch can screw that up for me.  I feel bad though because that makes me a terrible friend.  The sad thing is I love to connect with people. If you catch my interest and earn my respect I will be your friend for life.  I just can't always have lunch with you.

What I want people to understand the most about those of who are affected by M.S. fatigue is that we are not lazy.  We do not enjoy this lack of energy.  When we say we are too tired to do things it is not an excuse.  We are exhausted and if we could change it we would.

I connect

 

We all need to connect at sometime in our lives.

Get your connections established, and keep them strong. 

Share why you connect at MSconnection.org

 

 

IV Steroids my tips

Isn't it amazing that we don't always know just how bad we have been feeling until we feel better?  It  seems to be my experience,that only until after a round of IV Steroids I can then realize the severity of my symptoms.  I continue to plug along with my life and make small adjustments as needed.  I don't always recognize right away that my short temper, or slower pace is more than anything that just normal daily fatigue.   I tell myself the brain fog I experience when trying to read simple emails, or trying to decide what to make for dinner is just me getting older.

When I finally break down and go for the infusions relief is not immediate.  I actually end up feeling worse for several days following my last infusion. Crying, swollen glands,and severe mood swings are inevitable after an infusion of steroids for me. When I finally start to come down from the steroids and my system evens out, I am always surprised how good I feel.

I am not suggesting IV steroids for everyone.  We all need to find what is right for us.  IV steroids work for me so I am willing to put up with side effects a couple times a year.

If you do go the infusion route keep these things in mind:
 You may not feel better right away, in fact you may feel a bit worse.

 Swollen glands are painful, but normal.  I take ibuprofen to help.

 You will not make good decisions, so don't try.  You may think completely reorganizing all the kitchen cabinets is a fantastic idea, but it is not.  You will just end up on the floor crying, surround by every dish and food product you own.  Really.

Water. Water. Water.  Drink it, bath in it, listen to it trickle to sooth you.
Drink enough water to keep you peeing and it will help alleviate some of the bloating you may experience
My skin tends to be very painful to the  touch and a nice cool bath is very soothing.
Just the sound of water soothes my mind.  Use the sound in conjunction with meditation.

I try to find a quiet place to just hole up in for a day or so.  Everything sounds louder to me.  I stay away from TV.

When you do start feeling better be careful not to overdo, but try to get back to enjoying your life.

This disease steals much from us, but we can take a little back every time we decide to live the best life we can. 

update to yesterday's post

I am going to have to clairify a few things from yesterday I think.  Maybe clarify is not the correct word in reality maybe accept would be a better word.  After quite a heated "debate" with the well meaning husband who doesn't really have blinders on like I thought, he pointed out all those thing I just wrote about are my issues.  No one else's.  All mine.  100 %.  Making myself bonkers is my special skill and and the sooner I accept this the better off I will be.

Needless to say I was not very pleased with this attack, as I saw it, on my character.  As it always does, it took me some time to really think over his words and realize he was not attacking me just telling me some truths that I didn't want to hear, but needed to hear anyhow.  The gist was all the pressure I feel is completely self imposed. 

He's right. Now what?

"You look better" compliment or pressure I don't need?

Today I'll be receiving day two of IV Steroids.  It's kind of funny how after one day people are telling me "oh you look better" or "you're already walkng better".  I know they really mean well, but sometimes I just wish they wouldn't say anything.  The issues they can't see are much harder on me than the mobility part sometimes.

 I realize we are a visual species.  If you can see it you can believe it.  When it comes to a disease such as MS, friends, family and even caregivers familiar with the disease seem to need that visual proof I'm getting "better".  It's tiring. The slurred, garbled speech is not enough for some people to believe I am really having issues.  When my hands are shaking while doing simple tasks it's still not enough to for many.  "You're just tired, why don't you take a nap" is often heard in my house from my well meaning, blinders wearing husband. But as soon as the cane comes out well then it's real.

I love my friends and family, but sometimes the comments about "looking" better make me feel worse.  It puts an added pressure on me to get moving and back to normal again that sometimes I just can't do as quickly as they or even me would like.  I want to drive my Dancing Queen to her lessons instead of having my husband who just worked a 10 hr day have to do it.  Swimmer Girl is getting on to her practices just fine, but I just don't like having to ask others do what I am here to do.  Ya feel me? I want to go to the grocery store and have food and toilet paper- oh don't even get me started on the toilet paper issue!- in the house.  I sometimes can't bounce back as quickly as I used to anymore and I don't know how to tell people this without sounding overly dramatic and "look at me I have MS dammit"

 How about the rest of you? Does the comment during a treatment "you look better" make you feel better or does it make have a little guilt for not really feeling better?

pissin` in my flowerbeds

Helplessness, guilt, sorrow, rage, despair.  Those are just some of the feelings an exacerbation bring out in me.  Whether they are a result of some wonky brain wiring or dormant feelings I have squashed down that have come to the surface due to lack of control, I don't know, but they are real and hurt.  Right now I am experiencing very noticable symptoms.  I can't really walk proper, I have slurred jumbled speech, but the stuff going on inside my head is far more hurtful than any outward displays of this monster.

I want to shut it off.  I really do, but once the thoughts creep in, it's like trying to get a stray cat that you fed once to push off.  I love cats, but I don't need 'em pissin` all over my flowerbeds and these feelings are definitely pissin` all over my flowerbed.

I try hard to cultivate positivenss in my world these days.  I want to look at the beauty in my days and see the magic in everyday life.  I'm usually pretty good at it, but sometimes the shit creeps in.  When it does I just till it under and let it feed the pretty.  When those piss thoughts slip in things it gets harder because they just lay a veil of malodor over everything that lingers.

When a cat pisses in my flowerbeds sometimes it takes a few good hard rains to clear the odor.  Maybe that's what tears are for.

i despise thieves

Ok friends I have decide if I'm going to make the call.  I hate the call.  The one to the neuro's office.  It always leads to iv steroid treatments and all the b.s. that goes along with them.

This is the part of dealing with m.s. that totally pisses me off.  Not only do I have to give up my life to sit in the infusion center for three days, I have to ask someone to drive me and sit with me.  My hubby has a busy week at work.  My parents shouldn't have to take care of me. Hell I should be taking care of them at this stage of our lives. Then there is the withdrawal week of Hell.  

 Dance classes, swim practice, grocery shopping, dance comp ( up in freakin Detroit), costume alterations, cooking,cleaning, life.........

M.s. steals my time

M.S. steals my words

M.S. steals my strength

M.S. steals my enthusiasm

I despise thieves.  This one is not going to get away with it.

exacerbation station

Well good morning M.S.! Where are going today? You want me to not use my legs today? You want me to drag my cane through the snow and ice?  You also want me to sit around the house staring at all the things that need to be done yet I can't do?  Looks like we're headed to exacerbation station! How can I refuse?

No, really how can I freakin' refuse?  Honestly I have been doing pretty OK physically lately so I guess the huge weather changes and the little germ Petri-dishes at the dance studio had to catch up with me eventually.

I try not to make a big deal of it anymore at home.  My husband is pretty good, but I can always see the walls start to go up when I say "I'm not feeling well"  He tries, but he feels like if he acknowledges my struggles he is "babying me".  He does not want me to "use M.S. as an excuse to not do things". He is still a very much mind over matter kinda guy and it really drives me nuts. If I could just think my way out of this doesn't he think I would?  Meh it's an old fight and I simply don't have the energy for it.

He invited people over for a game night tonight.  Now I wouldn't mind except the the house is a stye.  The bathrooms are gross, kitchen floor needs mopped, and the normal daily dusting, sweeping .....
Oh and did I mention I am exhuasted?  I really don't want to get all dressed and crap.  Today should just a be me and my kindle and my most awful pair of sweats day, but "we are not going to change our plans just because you're not feeling great".  He's not really as cold as he sounds just very rigid.  Must be all that military training.  Why he married a loosey goosey gimpy hippie like me I'll never know.

I remember one really bad day during an exaserbation a few years ago.  I wanted to get out of the house and we were planning on gutting our bathroom.  He suggested we go to Menards and just window shop a little.  When we got there he pulled up to the front entrance and told me to wait while he gets a wheelchair.  I was like " oh Hell no! I am not being  pushed around in that!"
"I am not going in there with you if you're going to try to walk around"
"I have a cane"
 "you just got out of the hospital and can barely STAND" 
"I'll push the cart"
"no"
" I AM NOT GOING TO BE IN A FUCKING WHEELCHAIR"
 "YOU'RE BEING STUPID"
 "FUCK YOU!"
 "FUCK YOU!" 
 this argument went on much longer and louder, but you get the gist, and so ended our outing to Menards. I like to think I have gotten a little more perspective since then.  Also our therapist made me realize he was only doing what he thought was right to help me.  I guess I can be just as stubborn as he is.  That is the Aquarius in me. 

If I am going to be completely honest I would probably spend a lot more time wallowing in my M.S.edness and feeling sorry for myself if he wasn't there to snap me out of it.

As far as tonight goes I'll greet our guests and try not to obsess on the fact that I didn't get my lampshades vacuumed.

find things you love

I'm looking back at my previous posts and realizing I may have gotten off track here.  My main intent for writing this blog- ugggghhhh I really can't stand that word, "have you read my blog?", "you should read my blog", "I'm kind of a big deal, I write a blog" sounds so pretentious- was to help people. I really don't know if I am helping or just scaring the bejeezus out of folks.  I just hope anyone who reads the things I have posted find some sort of inspiration in the fact that no matter how many times I have been knocked down, I still have been able to brush it off and keep moving on.  I never intended to make myself look like some sort of hero who just keeps going with a smile on my face. What you get is the raw me.  The me who is so sick of this fucking disease and what it has done to my body, my mind and my family.

When I post about running it's because I want anyone reading to know they can still do things, a wheelchair is not inevitable.  Maybe you can't run today, but you might next week.  I wasn't even a runner until 4 yrs ago.  My family and friends worry about it constantly and tell me I push too hard, but it's what I can do.  I can't work anymore, but can run.  I am not saying everyone should be running or even athletic, but I think we all need to be able to do things we love an make us feel good about ourselves.  Please don't let anyone make you feel "disabled".  Once you go down that road it only leads to depressionville.  Not a place you want to live, trust me.

Be well friends.  You can follow me on "the"Twitter  @jeanninecz.

Breathe

My trail in the park, my "home"

I haven't run in weeks.  It's been cold, like dangerous bitter and tons of snow.  I refuse to run inside on a treadmill.  I actually have anxiety about going to the YMCA and running on the dreadmill.  I don't like people too close to me because I feel like I run weird because my gait is off and I tend to slap. I'm also a heavy sweater.  I'm a slappin' sweatin' hot mess.  I just can't bring myself to walk up those stairs and get on a treadmill in front of others.

Well, I got my butt in gear and went for a run today.  It was only 13 degrees outside, but not bad once I got started.  I really didn't know how much I needed it until I pulled into the park and and my eyes started to prickle with tears.  I was taken slightly aback by it really.  It was like coming home after a long trip.  Running for me has really been a life saver.  It keeps me steady and calm.  I can forget so many things while I run.  I feel normal.  I feel strong.  I don't have to think about anything.  I don't have to worry about my words coming out as nonsense.  I don't have to think about how to pay my electric bill this month. I don't have to analyze every numb or tingly spot on my body.  I don't have to think about where my next injection should be tonight.  I just have to breathe. 

I really hope that those of you out there reading this have something you can do to just let everything drift away for at least an hour of your day.  Meditate.  Read a book. Write a book.  Paint or draw.  Just find something where all you have to do is breathe.  Trust me it's worth it.

My Funeral

My Uncle passed away this week and I heard many times in the last few days that although the funeral was very nice and went smoothly it was not what he would have wanted.  He only wanted one day for a showing, and they had a two day showing.  It was very stressful for his three daughters.  At one point my cousin said they will have a memorial fish fry and have a fun time "like dad wanted" in the summer. Plans always get a little skewed when more than a few people are involved and even though my cousins are all grown women my other uncle sort of took the lead and ended up  vetoing some of the funeral plans because the way he thought to hold it was "the way it's supposed to be done".  Well, I decided to make my own plans today and told my girls this is the way I want things done.

First off I want a four day showing plus one day for the funeral.  I want a whole five days of me.


I will approve all pictures for my picture boards beforehand and if anyone puts one on that is not flattering to me I will haunt them and their descendants for all eternity.

I will give everyone scripts for when its time to stand and say a nice memory of me.  Everyone is required to speak on my behalf, if they don't they will be escorted from the premises immediately.

I want flowers.  Lots and lots of flowers. Everywhere. I even want them with me in the casket.

I want to be buried with my little pillow.  Everyone knows I can't sleep without it.

Although I am not a very good Catholic I have always found the catholic funeral mass to be very comforting and I want mine to be held at Good Shepard church where all my family has always belonged.  I do however want the mass to be punctuated by loud and random proclamations of "AMEN" and "TESTIFY".  If someone would be willing to pass out from grief that would be great.  Ooooooooo and all the women have to wear hats.  I do love a good hat.  I think I want one too.

At the gravesite I want a slow clap as my casket it lowered. 

 I may hire a mysterious man to stand at the back of the crowd and take notes.  Afterward he'll ask random questions about me and write down the answers.  Because I always tell my kids, "you don't know anything about my life between the hours of 7:30 am and 2:30pm (that's when they are at school), this should sufficiently freak them out.

Now since I don't plan on passing anytime soon, I may tweak and change some of this.  On second thought, no, don't plan on it.

Side note, here my 16 yr old swimmer girl just read this and said "No".  She will now be haunted forever.

Keep your business to yourself

I'm going to write a fantasy story about a 43 year old divorcee with four kids, that all call her Mum, who moves to california wine country from Ohio.  She works part time at a dance studio and attends school full-time for an arts degree. She gets by, by bartering and trading and working part time at a dance studio.  When her  fifteen year old daughter, who aspires to be a professional ballerina is accepted to very prestigious  dance school's summer intensive program all she has to do is ask for donations and voila everything is covered.  For a love interest I think I will give her a French wine maker.  He will be funny, and down to earth.  Oh and in her free time she will be an avid cross fitter. 

Oh wait, those are all posts from one of my FB "friends"! Holy Hell people can we please get real?  I don't mean to rant, but seriously?  I never take anything I read on FB at face value.  I can't afford to. If I did I would be crying in a corner everyday because of my failed, boring  life.  If I believed everything everyone wrote about their children, and husbands, I would be convinced that mine are basically untalented simple minded cave people.

I realize we all want to put things out in the world that make us look good. I have been known to take over thirty selfies just get that perfect casual profile pic. I don't post when my darling daughter has written on Tumblr that she thinks her dad is an asshole.  I don't screen shot texts from one spawn that say I just don't understand how she feels, and that I think the older spawn is perfect. However, when I do congratulate my kids' teams for a job well done at meets or competitions, but I don't try to make it sound like they're getting scholarships coming out their perfect little behinds for everything they do, but if that's what you want to think.........

If something really great does happen for someone I love to congratulate them and am happy for them.  The birth of a baby, being accepted into their first choice college, those things are brag worthy go for it.

One thing that really does bother me is the amount of people who complain about their problems on FB.  All of their problems.  Every. Single. One.  Maybe it's just my age or they way I was raised, but my problems stay in my house. "Hypocrite much?" you ask as I sit here post my blog every week.  In my defense, I post this stuff for people who may be feeling the same way and for them to know it's ok and they're not alone.  That and if I don't, someday I will explode and all these thoughts will just come pouring out of my mouth and in a never ending spew of hurtful and vile commentary on everyone I know.  So really this blog is a public service.  But back to the complaining.  I never talk about my illness with others.  I don't bring it up often and if I do it's brief.  I am happy to answer any questions people have.   I just don't advertise my daily challenges.  I am finding that more and more of the thirty and under set do just that.  I would almost think that their brains were directly wired to FB and every thought that pops in their head is automatically uploaded.
 "my husband is such a jerk he said I don't do anything around the house"
 to which the husband replies from another room in the same house I presume "I just wondered when you going to do the dishes?"
  "see what I mean? he doesn't do anything around here"
 "because I work 60 hours a week!"
 "while I'm stuck here all by myself all day with these kids!"

I have actually seen a post like this that just went on and on. 

Can we all please just try and remember what our grandparents already knew, keep your business to yourself.  Now excuse me while I attend the Super Bowl tonight. (in my living room)

to go back to work or not

What to do, what to do.  I am having a dilemma of the financial sort and I have absolutely no idea what to do.

It all came to a head yesterday after my husband and I had a discussion about our daughter's activities. As I have mentioned in previous post the sixteen year old is a swimmer, and the fourteen year old is a competative dancer.  Both activities are expensive.  I mean really expensive.  I try to shuffle the funds and do the whole "rob Peter to pay Paul" thing, but as it turns out Peter is pretty freaking broke right now too.  My husband is terrified that we won't have anything when he retires from the Air Force in six years and is feeling like he has let our family down by not planning better.  I feel like this is all my fault because I have M.S. and had to quit working three and half years ago, and go on SSDI. 

I know that any financial planner worth his salt would tell us to take the girls out of their activities and start putting the money in the Husband's retirement.  I just can't pull the trigger on that one.  They both love what they do.  Their activities keep them busy and social in a productive way.
I could cut down the Dancing Queen's amount of dance classes, but then she would not be allowed to compete.   Ugggghhhh!  I want to support them and help them achieve everything they want, but I just can't do it and I am completely torn up.  I sat at the dance studio last night just ready to lose it because there are so many fees and payments due, then I read a Tumblr post my SwimmerGirl put out just slamming me for not helping her get a Fastskin knee suit (that's a swimsuit that reduces drag in the water and helps the swimmer cut time) for upcoming high school districts.  I had to go to my car and just cry.  How embarrassing.  Yesterday I posted about being "enough", but right now I really feel far less than "enough".

I feel like I need to get a job.   I'm just terrified that it won't work out and then I'll lose my SSDI and have no job and nothing to fall back on. My degree is in landscaping and design, trust me I know that was not the best career area for me to pursue having M.S. and no heat tolerance, but I was young and invincible.   I really have no office skills, I always worked in retail.  My last position was in a wine and beer shop for five years. The position was actually created for me to work part time with full time buyer responsibilities.  Loved every minute of that job.  I felt so relevant. Before the wine/beer position I worked in a retail plant nursery for almost ten years.  Again I loved that job, because my schooling and plant knowledge really was an asset and it was just fun.  I did all these things and more with M.S., but now I feel so betrayed by my body and mind.   I never ran a register and because I get so confused the thought of  counting and being responsible for money is almost at phobia proportions for me.  I'm trying to get my Etsy shop going, but $25.00 to $50.00  a month does not a living make.

 I can almost hear you all saying "what? tell that sixteen year old to get a job!"  I know, trust me its been discussed.  She doesn't drive yet and that limits her options, not saying it can't be done though.  I need to think this through, but right now I'm in panic mode and my already compromised cognitive abilities are basically non-existent.  The Hubby is in shut down mode right now.  I hate that he is so upset, but I hate more that he just turns off and shuts down.  I have no one to really talk this through with.  It should be him, we are partners, or so I thought.

Wow, sorry about another bummer post today, but if I don't get it out it'll just eat my brain.  I know we will be ok, but when I see my husband worry it makes me worry because he is always the voice of reason and keeps me grounded. 

Musings

I have the worst case of cabin fever right now.  The artic cold we are experiencing is really cutting into my me time.  My kids are finally back to school today and I can work on some sewing that needs to be finished.  Slipcovers, oi! That is another subject for another time.  Crazy time consuming, but worth it with my crazy dogs who think the furniture is here simply for their comfort.

Anyhow, as I was saying, I had some time to work on this project and I always put on music when I sew.  I sing along to all the songs like I wrote them and I know I sound pretty rough, but no one complains.Well, there was the one time the dogs started howling, but I like to think they were cheering me on.

Today my little concert time got me to thinking, would I rather be able to sing perfectly for one hour with no one else to hear me, or would I rather be famous for singing even though I would definitely need auto-tuning? A lot of auto-tuning.

I came to the conclusion I would rather be able to sing perfectly for one hour. Although there would be times I would try to chase the perfection and repeat it, I think I would also be proud of the fact that I was able to do it.   Then thought  occurred to me "whose definition of perfect would I be striving for?"  My dogs sure thought I was entertaining.  Isn't that enough? 

I think I have been almost obsessed with the idea of "perfection" for much of my life and instead of asking myself what do I think is perfect, I have spent too much time worrying about everyone else's views.  From body image to parenting.  I even worry myself about having M.S. the right way.   How crazy is that?! If I start substituting the word "enough" for perfect I would be much happier and content.

What about you all?  Are you striving for perfect when "enough" should be enough?

Cod loins

This post today is just for fun.  I have been stuck in the house for a week not due to my M.S., but because of the duhn duhn daaaaa......POLAR VORTEX.  We have gotten snow and more snow, our roads were impassable and our county made it illegal to drive unless you are emergency personnel.  I was losing it The Shining style!  I finally got to go to the grocery store-wow, who knew I'd be so excited about going to the grocery store?- yesterday and this is what I saw. 

 

 

Just a few Observations made grocery shopping today:
First I had no idea cod had loins and I burst out laughing like a weirdo when I saw the sign. I stood there tempted to ask random strangers "do cod really have loins? Don't they need legs?"  I just settled for taking a picture instead.

The baking aisle was a ghost town, but I couldn't even get close to the yogurt display. Those New Year's resolutions are in full force.

Apparently bananas are a hot commodity after people have been stuck inside for days. I expect to see lots of posts about banana bread very soon.

The elderly will steal markdowns products right out your cart when you're not looking. No proof on this one just a gut feeling, I know I put those mushrooms in my cart.

 

Everyone in the store had this dazed look about them as if they couldn't believe they were really out of their houses. No friend it's not a dream, we are in Kroger and your blocking the spaghetti sauce

 

All in all everyone was really pleasant and as a person who likes to strike up silly conversations with random people, I felt my silliness was appreciated and many times reciprocated today. 

 

Cod loins, who knew? 

2014 let's do this

Wow, 2014 huh? OK well let's get on with it then.

I don't make resolutions anymore.  I find them silly and too much pressure.  It's kind of gross what we do to ourselves when the "new year" comes around.  We convince ourselves  we haven't done anything with our lives for the previous twelve months and become determined to change everything.  Yuck.  Then we judge each others resolutions and make it a competition.  "oh you want to lose 40lbs? well I'm gonna lose 50lbs and become a certified trainer, so there (sticks out tongue like a five year old). " Double yuck.

This year I'm just going to keep doing what I have been doing for the previous year.  Living.  Let me clarify.  I'm going to live my life and not worry so much about what everyone else is doing.  For example, one of the swim moms who means well and is just trying to do the best for her kid by taking over the swim team's operational needs, would normally bother me, and by bother me I mean I would lose my shit and be all "I can't stand that bitch".  The reason? Because I want to be that mom, but I just do not have the tools in my brain tool box to do it.  Yesterday after an email about team pictures and other administrative issues she sent to the athletic director, and principle, then forwarded on to the rest of the parents,  I found myself saying "ok well at least she thought of that and is bringing it to the school's attention, and kept the rest of us in the loop.".  I used to get really frustrated with her daughter for not really supporting the team at meets because she is better friends with other girls that go to rival schools.  Then I had to step back and  put the relationship into perspective that not everyone clicks.  Just because they are on the same team does not automatically make all the kids BFFs. Then I really  had to step back and realize this is not my teammate.  She is my daughter's and if it doesn't bother Ab, then why should it bother me.  At this point I have stepped back into a- whole -nother county and realized I need find my own thing.

I'm learning everyone has different strengths, organization is not one of mine.  I  know this now.  I have missed too many appointments and scrambled through too many piles of paper looking for an important bill to fool myself anymore.
Thinking outside the box and creativity are my strengths.  I can look at an item and find ten different uses for it. I like that about me. I look at things differently.  My Ab, being sixteen and all, will either find it hilarious or dreadful, but at least I still get a reaction from her.  Many times it is the form of  a post on her Tumblr account. I'm OK with that.
 I don't interact well with people being such an introvert, but when I do connect with someone they will have a friend for life in me.  Unless of course they screw me over and then all that goes out the window, and they are my nemesis for life.  Still working on that. 

I realize its only the 10th of January and all my insights may go out the window tomorrow, but then I will just have to get back on track again on the 12th.

All these new attitudes about life will help me in dealing with the M.S. Monster too, I hope.  I can't do everything. No one can.  I can only do my best and my best only has to be good enough for me.

Happy, belated, New Year Friends.