The Last Few Months

Seems I'm back after a long few months.  Life just didn't allow me the time or clarity to post anything recently.  I have to be honest I'm still not experiencing the clarity of mind that I would want, but such as life with Mutliple Sclerosis.

Here are a few updates:
  I moved my daughter down to college in August. She is 4 hours away and it feels like she is a whole continent away.  She is my hero.  She has taken this new challenge on and is thriving through all the stressful, sleepless nights of studying.  She has her eyes on Johns Hopkins for med school.  Did I ever mention she is a Neuroscience major?  Most people think she chose that line of study because she grew up with me and M.S., that may be partially true, but she also has an insatiable need to know how our bodies work.

The fifteen year old has switched her focus from all dance to theater. She is determined to be on stage in New York someday,  This girl has a talent for everything creative.  Writing is becoming a passion for her and let me tell you she is good.  She wrote a fictional story about an abusive mother who turns out to be a serial killer.  At one point the teacher actually wrote on her paper "oh dear, I hope this is fiction?"  Well duh.  I told her if your creative writing teacher doesn't question your home life then your not doing it right.

My parents are in the middle of a move to a new home that has been a total cluster fuck from the get go. They decided to downsize due to my Dad's health. They had quite a bit of land and a larger house. It breaks my heart because this was my Dad's dream home when they moved in 15 years ago. He worked so hard his whole life and accomplished things most of his family couldn't.  He never graduated high school, but worked his ass off, holding sometimes two and three jobs.  When he had to stop working due to Rheumatoid Arthritis and IPF (hardening of the lungs) he was lost.  This house became his sanctuary. Thanks to my Ma and her skill with plantings the property looked like a park. I took him aside and said, "I know this is not ideal or where you thought you would be at this stage of your life, but I'm here and will help make the new house a home for you".  I have only seen my dad cry a few times. He didn't cry then, but his eyes teared up and that kind of broke something in me.

I'm still taking my Tecfidera twice a day. I'm still itching like a dog with fleas from it, but at least I don't to poke myself with needles anymore.   I feel like my eyes are a bit jacked up from from this stuff, but I haven't made a doctors appointment. I will soon.

So there you have it. My recent life in a blog post. So exciting right?

I run....

I haven't written about running lately.  I've been doing it, but just not very good in my opinion.  I get so frustrated with myself.  I feel like I'm going backwards instead of progressing. My pace is a slow 12-12:30/mile lately. It used to be in the 10s and 11s.   I work so hard for every stinking mile I do.  My energy levels have plummeted to a new low lately and just keeping up with my daily life is hard, let alone trying to run.

I keep telling myself not to complain, that I'm lucky to be able to run. 
Then I get pissed! Why should I feel lucky I can run?  Why should I feel grateful to do something others can do without even thinking about it. 
Then I feel guilty because I know that not everyone who is afflicted with Multiple Sclerosis can walk let a lone run. 


Yikes! Who knew a three mile run could involve so much drama?  In the end I am grateful I can still get about on my own for now.  When I run my slow three miles I'm doing it for all the times I wasn't able to run.
I run for the days when I won't be able to in the future.
I run for therapy.
I run for focus.
I run to hide from M.S. even for a little while.
I run to feel strong even though I'm not.
I run for everyone who can't walk let along run.

I run because I love being in park navigating the trails. I hear the birds in the summer and feel the snowflakes on my eyelashes in the winter. It is my heaven and haven. 
In the end I am grateful I can still run.

Parenting

I am taking my 17 year old daughter and niece to a Lana del Rey concert on Sunday. I love live music and was so excited about this  six months ago when I bought the tickets.  Now? I have been obsessing over every aspect of going.

The drive is about 2 hrs.
It's outside and we have general admission lawn seating.
Is it going to rain?
Will the hill be muddy?
The concert is sold out.
What should I wear? I don't want to look like a mom trying not to look like a mom.
I don't know where the bathrooms are. 
Am I going to be able to stand for all those hours?
I have to drive home in the dark!
Blah blah blah and so on.......

I'm truly nearing panic critical mass here.  This all goes with my M.S. experience.  I tend to shy away from crowds and unfamiliar places. The concert venue is is not unfamiliar to me.  I have attended concerts there in the past.  It's actually one of my favorite venues.  I have always gone with my husband though.  Never by myself.

What was I thinking?  I was thinking this would be a great graduation present for my daughter.  I have never wanted my kids to see me shying away from things because of my M.S.  I want to be a strong role model.  I think I have.

Parenting with M.S. has been full of challenges for sure! It has affected every aspect of our lives since the day the girls were born.  The thing is kids are resilient, and this has been their "normal" their whole lives.  The have seen me at my lowest, being hospitalized, with tubes in my arms, not being able to walk, and being completely broken down.  But they have also seen me over come all those things and keep going.

So I will suck it up, put on my flower headband, and hope a friendly cloud of smoke wafts my way to calm my nerves.

My Mom coffession

I have been a bit obbsessed with the fact that my oldest daughter is graduating high school soon.  Too soon.  I am astounded about how quickly these school years have flown by.  I worry that I may not have been involved enough in her schools.  I worry that I haven't told her enough about boys.  I worry that I haven't taught her how to make rice.  Yes rice.  It's cheap and you can do a ton of things to liven it up.  Anyhow I worry.

Here's the biggest thing I worry about though.  My dirty little secret.  My unspoken shame.  I worry that I am losing my best friend. "Whaaattt?!" you exclaim  "She is your daughter she can't be your best friend."  Not true.  She can be my best friend, but I just can't be hers.  And I'm not, I know that.

The reasons I consider her my best friend should be pretty obvious.  We spend loads of time together.  We critique each others outfits.  Share makeup tips.  We even go halfsies on shoes and makeup.  She does wear them more than I do though.  We have similar taste in music and are always like "have you heard the new Yelawolf?" " I can't wait for the Lana Del Rey concert".  I know all the school gossip. We talk about her future. We cry together and laugh together.   I have tons of fun with her.  I love spending time with her. So yeah she's my best friend.


Now I'm not naive enough to think she tells me everything.  I know she has things she shares with her friends that are all her own. I also know I get on her nerves. When I say "no staying all night at the cast party I want you home at 1:00"  or "I need an address of where you're gonna be tonight".  I always get a little attitude about that stuff.  That's fine by me because in the end she is always home at 1:00 and I always have an address.  That attitude also reminds me that while I may think of her as my best friend she will always see me as Mom first.

A special happy birthday

I need to say Happy Birthday to my friend Tracy.

She and I met in 7th grade in health class. We were taking a test and she whispered to me "hey can you move your arm I can't see your paper".  I was like "what?!"  Then she smiled and we got in trouble for laughing during the test.  We were attached at the hip from that point on.

I spent so much time at her house that her dad thought he had a new daughter. We went so much together at a very young age. We smoke, drank, cut school, and were just plain old hooligans with a fist fight or two tossed in the mix.  With arrogance that comes with youth we thought we were invincible. The situations we found ourselves in make me cringe now as a parent, but back then we thrived on the adrenalin that flowed through our veins with each experience.

We defended each other even when we knew we wrong.  We could call each other bitch, or whore, but if anyone else did, well, be prepared for a beat down.  We held each other up after the suicide of a good friend of ours.  We cried for each other when our hearts were broken by some douch-canoe of a stupid boy. We were sisters.

She was very sexually active early on. I was not.  She was the one who always told me to wait.  Her story is not mine to tell, but suffice to say she ended up pregnant at the age of 15.  I was there through it all even during the conversations her father had with her about putting the baby up for adoption.  Her mother left the scene when Tracy was only 2yrs old.  Heavy stuff for a young girl right?

Those early teen years with Tracy and her dad and brother helped shape me in ways that I'm forever grateful for.  I learned so much about friendship, and sisterhood.

As high school went on we started to lose touch since Tracy was staying home taking care of her baby and eventually got pregnant again at 17.  Our lives went separate ways for years until we met up again in the grocery store one day.  By that time I was pregnant with my second daughter and Tracy had just had her fourth.

We kept in touch, went to birhday parties for each others kids and just chatted a lot.

Tracy was diagnosed with Lupus some years back and things started to fall apart for her.  Her health steadily declined.

She would have been 44 today.  She passed away almost two years ago leaving behind one son, three daughters and several grandbabies with another due any day now.

Happy Heavenly birthday Tracy. You were my best friend, and sister during a very special time in my life.  I will always love you.

Words

Choices made, Hell to pay.  I'm not gonna apologize for making it.

I covered all my scars with layers of denial and tears a long time ago.  They're still there, but you'll never see them because you can't open your eyes wide enough to see beyond you.  Worked for what I have. I haven't lived the life I dreamt of.  Haven't come close.  But I do what I can.


 I'll never be the hero of a story. My stories are not for you.  Easily forgotten, easily lost.  One time I forgot myself, let someone get in my head. Poked around stirred up hope and dreams then they were gone.  I think it was a dream because it was dark outside.  Mourning came and it was all gone.

Choices made, Hell to pay.

Always afraid to try.  Always hurt.  Never trusting.  Those lyrics are tattooed in my mind,  if you look close enough you can see the echoes in my eyes.  But you'll never get close enough, I won't let you.

Afraid to live. Afraid to die. Afraid to be dismissed and pushed aside.  That's only part of me.
Longing to belong and know my worth is all of me.

Where did the time go?

I'm sitting here looking at graduation party ideas for the Swimmer Girl. My oldest. I just can not believe she will be done with high school in a little over a month.  Where did the time go? I know every parent asks that question, but until now I never understood the significance of those simple words.

I still remember dropping her off at preschool like it was yesterday.  I was a mess,  and if I'm going to be completely honest I kind of wanted her to more of a mess.  She took her teacher's hand and never looked back.  I on the other hand crept all stalker-like around the building to the window and just watched her with tears forming in my eyes.  She was fine.  I was not.  I bawled into the steering wheel once I got to my van. It took all my willpower  to not rush back into the school grab her up into my arms and run for the hills.

I know I asked "where did the time go?" that day.  The thing is I brought her home 4 hrs later.  When she leaves home for college this August she won't be back home any time soon.  I won't be seeing her everyday after school like I do now.

I know parents always say things like "I can't wait for her to be out my house".  I don't.  I caution  parents with young kids to be careful what you wish for because some day sooner that you'll believe you'll be asking "where did the time go?", with tears in your eyes just like me.

SSDI Regrets part 2

I want to clarify a few things from my previous post.  First things first

I'm the realist,( realist)

sorry for the Iggy Azalea line, but it always pops out when I say that.  Anyhow first off I want to say my husband is really not as jerky as I make him sound sometimes.  He just asks the hard questions that I don't like to ask myself.  He really does have my best interest in mind. Secondly,  no I am not writing this because he was angry about my last post.  He doesn't even read my blog even though I try to get him to but end up sounding like Barney Stinson from How I Met Your Mother.

"you should read my blog it's getting better"

The truth is he's right to an extent. Before I was receiving benefits, if I had to push through days at work I did.  I was more open to new experiences.  To be fair,  those usually came as a result of my work. I attended wine tastings with sales reps, I would have to make trips, host weekly wine and beer tastings for my customers.  I was always meeting new people.  Did you know winemakers are complete lunatics and a total blast?  Well they are and I had a lot of fun learning that little gem in my old job. 

Now that I am not working and have a steady if small, income  from social security, I  am much more sheltered.  I rarely go out.  I don't really meet new people.  Due to the progression of my M.S. I don't have the energy to do those things anymore.  In reality I didn't have the energy to do those things then, but that was part of my job and my income. That is the pisser for me! I miss my old life terribley, but I can recognize now that maybe I am looking back on it with more romaticcaly than it was.

Social security has made it easier for me to rest when I need to without worrying about calling of work. I don't feel like I am putting a strain on not only my family, but also my co-workers when I have a long relapse. Towards the end of my career I was starting to feel very undependable.

 There are times when I feel undependable.  I don't make commitments to people too far in advance because I don't want to cancel.  I haven't taken up volunteering for things at school for the same reason.  You know the parent booster mafia, I mean moms, don't play that shit.
In Michael Corleone voice

 "Mrs. Smith made cookies.   So did Mrs. Sobecki. Mrs. Jurski. Mrs. Mosiniak. Mrs.James.  All made cookies.  Today I took care of all booster business so don't insult my intelligence and tell me you were too exhausted to make cookies.  This is what I'm gonna do since we're all family here I'm gonna put you in the visitors side concessions booth. 

Get there and never heard from again. Just sayin'

 I just want to stay under their radar.  I still feel bad sometimes that I am not working outside the home and bringing in a bigger wage. However,  as I pointed out to Keith, if I called off work I was not getting paid for it. When I lost a job because I wasn't "performing to the acceptable level" due to relapses I wasn't getting paid either.

It is a trade off.  Do I think it's worth it? Sometimes.  When I'm not looking through my Rose` colored glasses, and beer goggles.  Honestly I know it was the right thing to do for my health.

SSDI regrets?

While driving in the car yesterday, Keith and I were discussing why I don't do some things anymore. I really thought we were past this.  I asked him to go to the store with me, and he got really angry.  I was nervous because I wasn't feeling well.  He snapped. and this is when all this started.

Keith asked me if I think I gave in too early when I decided to take Social Security Disability four years ago. I was taken aback as he tried to explain his comment.  He asked if I thought maybe I would try harder to do things and be happier if I hadn't filed for SSDI   That I always have an excuse now not to try new things like a part time job that would make more money than I get now.  He thinks I would take more chances and "push through" the times I don't feel well.

I was stunned to say the least.  I tried really hard not to cry (I failed), but I was hurt and super PISSED.  Was he serious?  Did I need to
get the therapist transcripts?  Of course I think I gave in too early even though I had been fighting this disease for 20+ years before filing.  He was on a 12 week deployment at the time, I had no support from family, friends had their own lives and I was alone with two daughters trying to make things as normal as I could when I couldn't walk.  My Neurologist was worried because I was relapsing, but not remitting.  My MRI was showing new lesions and active old ones.  I was a mess physically and mentally.  It was time to focus on my health, not my job.

In answer to my husbands question, yes I do feel like I gave in. I loved my job. I loved all the jobs I had to leave due to this disease.  I let Multiple Sclerosis win and take that from me.  There are still many days I feel like a huge failure because I can't control this. If I could keep a job and make more money I would be thrilled. 

The fact is that is not my reality anymore.  I try to be OK with that, but when someone I trust and respect starts to question my choice I become a lot less OK with it.  I have to remind myself these past four years I have been able to attend swim meets and dance competitions with my daughters because I didn't have to choose using all my energy at work over cheering my daughters on.  I have been able to take care of my physical health by exercising when I am able as opposed to flopping the couch zombified  after a stressful day at work.  I have to ability to just take it easy when I need to and be a better wife and mom.

I will always have regrets, but this is something I have to live with.  I just hope the man I choose 27 years ago to share my life with can too.

And the winner is.....

Finally got to my neurologist appointment.  Brought the hubby with me so he can listen to my options for new oral medications. I also wanted to discuss my current symptoms with the Dr. and have Keith hear the neurologist's assessments.  I think it's a good for him to hear from a "professional" every so often so he can be reminded this disease is always working on my body and changing whether  he can see the physical effects or not.  My fatigue is not something a good nights sleep or and hour nap can fix.

Once we were done with the regular assessment portion of the appointment the Dr./inquisitor peering over steepled fingers with a slight smirk(yeah I caught that)asked the million dollar question,
  "So, are you still taking the Rebif injections"

I looked him straight in the eye, plastered a huge smile on my face, slapped my hand on the desk and said,
"No. That's why I'm here"

I have never seen him laugh out loud in all the 10 years I have been seeing him, but he let loose at that.  I know he was testing me because I had  spoken with his nurse previously and confessed my injection indiscretions.  I told him I feel like a baby that I can't bring myself to inject Rebif anymore, but that is just how it is for me now.  He was very kind (like always really) and went right into explaining my options for oral medications.  I had already done some research on the subject and was prepared with and initial choice, but I wanted to hear from him as to what he would recommend. We discussed all three.


Gilenya  http://www.gilenya.com/index.jsp

Aubagio https://www.aubagio.com/

Tecfidera http://www.tecfidera.com/

We came to the conclusion that Tecfidera would be the best option for me.  Tecfidera was my initial choice and I was pretty thrilled that was the medication he was most leaning towards for me. I am not going to go into the specifics of each of the drugs.  You can look those up for yourself with the included links.  This a personal decision for everyone and one that should be made with your neurologist.

I had the initial blood work done and will be have an MRI in the next few days.  I am currently experiencing a flare- Boo Hiss- and will be having a round of IV steroids - double BOO HISS-so once I get over this bump in the road, I'll be able to get on with the new medication.

How are you feeling?

How do you respond when someone asks "how are you feeling?".  Are you honest if you're not feeling all that great? Do you fudge the truth to steer the conversation in another direction?  My answer depends on who's asking.  If it's family or a close friend I tend to be a little more honest.  If it is an aquaintence who knows I have multiple sclerosis, but I don't know very well I'll fudge it with "I'm good and you".

The sticky part comes when I am honest and the reply always seems to be "well, it's just the weather, everyone is feeling like that", or "well you seem like you're walking alright".  It is so frustrating because I know they are well meaning and trying to be supportive, but in the end I feel like my symptoms are being diminished. I mean jeesh you asked so please don't make excuses for me or try to reinterpret my symptoms.

Oh and if I get asked one more time when I start my new medication, I think I'll smack someone with my cane.  I understand sometimes people believe that medication is a magic pill that will never make me have another relapse again, but if that were true that would be a cure right?  Our multiple sclerosis medications control the disease to an extent.  If I stop taking my medication that does not mean I will have a relapse the next week.  The reverse is sometimes true. I can take my medication religiously as prescribed, but still have several relapses during the year. 

While we are on the subject of relapses,  a relapse for me is not just the inability to walk properly.  An exacerbation can affect my sight, my left arm, my speech, my cognitive thinking, or be extreme fatigue.  It is not cut and dry and even after 24 years this disease is always changing for me. 

Do find these things true for your situation?  How do you handle them?  For me the best place to be completely honest is right here.  Lucky you!

Apppointment or Confessional

My upcoming Neurologist appointment has been really weighing on my mind.   First off, I have to go in and confess that I have stopped taking my Rebif injections.
That  makes me nervous, just like going to confession at church. If you're Catholic you can relate and remember sitting in the confessional pouring out the great sins of your week, "I called my little brother a jerk, I though my mom was the B word when she didn't let me go Leeca's house, I yelled at Leeca and threw my roller skates at her and walked home in my socks" You laugh, but that was big time sin back in the day. 

These days I sit nervously in the exam room, and when the doctor comes in I hem and haw about how I'm actually doing then all of a sudden just blurt out "I'm sorry I haven' been taking my shots".  I don't want to be judged or looked at as "bad", but aren't I if I don't take my medication properly, or call my little brother a jerk.  The priest, I mean doctor just sits there stone faced and when you're done doles out my penance and feeds my guilt.   I always feel like I have let my neurologist down somehow by misbehaving and not taking my injections as prescribed.

 Depression, as I have written about in the past,  is something I deal with everyday.  I believe the Rebif truly was making it worse.  I feel better mentally since I have stopped the injections. Physically, I would say I feel the same, but not being able to see my lesions I really don't know. 
 That's the kicker.  I can't really see it so it's hard to believe the shots are worth the aggravation.  I can believe and have faith in a higher power, creator if you will, even though I can't see her, but my M.S. meds, not so much.  Rationally I know I have been having less flares than in the past before Rebif. Sometimes I feel like my whole existence is just one big exacerbation, and I just deal with it until I fall because my gait is so unsteady, or I can't lift my arms, and call for IV steroid treatments.  There are times when I feel like I'm only on medication to make my family happy.  Mr. HubbyMan thinks I'm being selfish if I don't take the medications because inevitably he is the one who is inconvienced when I have a major flare and has to miss work.  He wouldn't say that exactly, but that is it in a nutshell.  Others feel I am not taking care of myself properly if I don't investigate every means and medication out there, and I'm just playing fast and loose with my health.  Arrrrggggghhhh! I know I know who gives a shit what others think.  Sadly this girl does.

I want to give the new oral medications a try and will hopefully be a candidate.  I have read some side effects such as nausea and possible heart/liver conditions.  Yikes!  I just want to feel good and not have to stick myself with a needle anymore.  

So I will go this appointment and make my confessions, "forgive me Doctor, its been 3 months since my last injection".  Do my penance, "three blood tests, eye exam, EKG, an MRI-with contrast, new oral meds with possible liver and heart damage".
I will try to be a good M.S. girl and stay on my meds, but you know what they say about M.S. girls.........

Good enough for today

I know I haven't posted in over a month, but now it's time to get back on track.  My last post was about how I planned to handle the holiday season this year.  I'm happy to say things went pretty well overall.  Of course there were a few bumps in the road.  I still let myself get a little crazed about decorations for about a minute then I let it go.  My daughters reminded me that they always love our house at Christmas time and that was enough for me.  Cookies got done in batches over the course of a week and that was so much more relaxing than trying to do it all in one day.  When the teens took a large batch to the elderly next door neighbor's house we recieve a phone call within minutes from son to say thanks and she was tickled to recieve the cookies.  That made all of us feel pretty good. The 15 year old  dancing queen/actor/playwrite/future Tony Award winner, designed this crazy ginger bread house, and printed up cards for all cousins.  They loved them.  The 17 year old swimmer/straight A student/lifeguard/swim instuctor/ future leading Neuroligist, reasearcher in the country, worked her booty off yet still made time to hang out with the family.  I am going to miss this girl when she heads off to college in August.  I will be getting over my driving induced anxiety to make the three hour drive to see her for sure.

I also touched on the fact that I plan on chaging M.S therapies this year.  I had to reschule my Neuro appointment for later this month but I'll be sure to write and update on what I choose.

Trying to make this the best year possible my family and myself. I always felt in the past that I'm just not enough.  Not a good enough wife, mom, housekeeper,friend,daughter,sister.  This year that has to change.  I'm starting to say "this is good enough for today, I'll see what happens tomorrow"  I've already had a run in with the Hubby about housework and the such. And I quote" you just haven't been pulling your weight around here.  I work my ass off and should be able to have a place to relax when I get home"  He later retracted the statement saying he was mostly upset with th girls not picking up after themselves, but it still stings.  Especially when he always makes suggestions for places I could work part time.  I'm on SSDI.  That's good enough for today.

Crazed Gingerbread House