Some Days…..

Some days are just sad.  They just are.  Nothing can make the grief stop.  Medication can mask it.  Prayer can give me enough hope to keep going.  But nothing can stop the sadness.

Why does everyone have a family but me?  Why can’t we reproduce?  Why do the semi-grown kids from other people that we have want nothing to do with our lifestyle and home?  Why do they opt for the party, everything goes lifestyle instead?

Why do I see others in similar circumstances, or even worse…continuing in their life and able to have children together?  Why am I so cursed in something that is my biggest dream?  Why can’t I just have a family.

Why, why, why.

How do I plan for a life that will not include children…what else does one dream of?  All that there is left to dream is material. I don’t want material.

It is what it is.

I don’t have the answers, but I have to live the pain.

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#2 Spouse/Significant Other

So the next topic in the gratitude challenge is Spouse or significant other.

Where to begin, lol.

It all started back in 2001, I was separated and little did I know, my husband of today was going through similar trials. His first “official” (or on paper legal) separation happened in 2001. We didn’t know each other, but the next few years shaped what would become our future together.

Fast forward to 2004, I had been through another abusive relationship, this one damaging my child as well as myself. It had taken me a few years to want to try and even think about dating. And he was yet again finding himself used and kicked out on the street while paying all the bills for his ex and kids.

What a damaged pair we made.

2004, the year of starting over. Together.

Fast forward again to 2007, we had made it through so much. Just those few prior years could be several blog posts all on their own. Still sticking together. I am not sure if we were crazy, or just crazy. Yes we were crazy.  We got married.

The ex’s and kids (and satan working through them) did everything possible to see us fail. We did not. We found God, or rather my husband did. That changed everything. For awhile.

Then we walked away from God….again. Both of us. More drama, more stress and more mistakes.

But God did not walk away from us. Now years later, we are stronger, more focused on what is important. Things are not perfect, there will always be crazy ex’s in the background waiting to bite, and kids who prefer they not have a step mom or step dad. Faith got us through, and faith will keep us together.

John 10:10 The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.

I am so thankful for the blessing of a committed husband, who carries me when I can’t go on, who pushes me when I need a kick in the butt, and who challenges me when I need to think differently.

I am grateful for my husband.

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52 Somethings of Gratitude Challenge

So as I was pinteresting (made up word) last night, I came across a pin entitled 52 weeks of gratitude challenge.  I have heard of these before, and one of my facebook friends is doing a 365 photo challenge, but I have never attempted to complete one of these challenges.  Bucket List!

If you have been reading my posts this far, you will notice one trend…..As much as I am trying not to be bitter about things that are not in my control…but affect me directly, I am SUPER discouraged and bitter and trying hard to get out from under it.  Partly depression, partly me being one of those people that always cheers for the underdog-I HATE Un-fairness.  In any shape or form.  When things are not right, I have issues.

So…enter the challenge.  I thought to myself, what better way to help me focus on the positive instead of the negative (or at least the crap that I can’t and never will change).

52 weeks to me sounds way too long, but if I try and do this in 52 days it will also fail given my schedule.  How about we say 52 somethings…I will do a challenge # when I need to.  That may mean writing on a challenge a few times a week or only once.  But I will get ‘er done! (yes I am country…can’t take that out of me).

This completes my first post, which is 1. Why start this challenge.

Check!

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Discombobulated

dis·com·bob·u·late
ˌdiskəmˈbäbyəlāt/

verb

North Americanhumorous
past tense: discombobulated; past participle: discombobulated
  1. disconcert or confuse (someone).
    “this attitude totally discombobulated Bruce”
 Ya…..that’s me.  So awhile back my Dr. informed me that I was having a “nervous breakdown”.  This being that I had gone through some extremely difficult circumstances…and still was.  Not one, but about five or six things that most people go through only one at a time.  I had multiple issues to deal with.  I told her I could not stop crying all the time and was fed up but could not change anything and felt overwhelmed and helpless.

So I did what I had to do and just kept trudging along….day after day…..looking after everyone else.  When no one was looking after me.  I kept working.  I kept advocating.  I kept breathing.

Fast forward to a discussion I had with a teen in my life.  Telling me this and I quote “well if you are having a nervous breakdown you should just stop working like my mom”.  Really?!  Like who will pay my bills?  Um, ya that’s not an option.  I don’t have an ex husband AND a boyfriend helping pay my bills.  I am not able to “just stop working”.

I don’t have options.  Well I guess I have one, I could just give up, not care about my bills and stop working.  No, that is not me.  I was not raised to be lazy, but to deal with things head on.  Not to give up.  To lean on God for my strength.  I was blessed to have an amazing family who instilled a good work ethic but also given determination through my genes and a crazy strength.

I can do all things through Christ who strengthens me-Philippians 4:13

So, I can do all things….but sometimes it would be nice to have a little support.  My husband is supportive but working a 60+ hour workweek does not leave much time to help.  Weekends I am in my glory, he cooks for me and helps with the dishes and laundry.  Taking Sunday to rest with me and trying to incorporate at least one or two date nights in there a month.  I know I am blessed to have a husband who cares and works so hard at a job that is a dead end job with no benefits or sick days and few possibilities for other employment.  He does his best.

Everyone who knows me well asks me, how do you do it? How do you keep going?  Honestly, the only reason I have gotten through all the things I have is God.  I know He is real, He is there for me and He will sustain. But to live that out each and every day is hard.

I have bad days.

My life feels well discombobulated.  It’s a crazy mess of trials and trouble.  But at the same time, .I am SO blessed beyond belief.  THAT is what gets me through.  To know that in the midst of any trial or trouble, I am BLESSED.

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So it’s Friday…..

I made it through the week.  Mostly.

Living with a chronic illness is exhausting.  When I am in a dizzy spell, for lack of better term that people can understand.  When my eyes are having a soccer match and I can’t focus properly, (between 30-80% of my waking hours…varies by day) then my world is filled with exhaustion.

Ataxia in many people can be an invisible illness.  No one would know I can’t see or focus unless they paid close attention.  I push through it most of the time.  I make more spelling mistakes and I can’t read as often as I would like, but I can still function.  Because I persist through it.

All that persisting takes energy.  A lot of energy.  Keeping my balance during spells also takes alot of energy.  Most of the time I avoid walking or going anywhere when this happens.  That means alot of sitting.  Alot of gained weight (30 pounds since last year).  The best thing ironically for this disorder is…..wait for it…….exercise.

So it’s a catch 22, can’t prolong or better my quality of life unless I exercise, but exercise triggers my symptoms.

And so it is.

Working full time is a challenge, a challenge because I spend most of my day on a computer screen that I struggle to see.  Everything just takes more effort.  Working a 5 day work week is horrible.  If I make it through 5 days I am so tired I just want to sleep.  I want to have a nap.  I try to nap but in a semi-open work environment that is hard.

I am hoping one day I will be able to cut my hours to part time.  But given my husbands obligations, that does not look possible, I am the main breadwinner….at least until child support ends.

Sigh.

But at least I am still alive. Some days that is all I can cling to.Technology-Fatigue

I really wanted this blog to be a positive space, but it feels like all I am doing is venting. Maybe I need that.  I do not have a friend to vent to, one that can understand.  So here I am.

Trying to look forward to the positive, we are making progress in our long term goals.  One day I hope to be on the mission field in a volunteer capacity overseas part time. I also dream to drive our RV all across North America.  One day.

Send me a friend…..who understands

So lately my prayer life has been a bit stagnant.  Or pretty much only a grab n go mish-mash of prayer requests, during the only quiet time I have about fifteen minutes.  It’s a “please God, can you, help so and so, be with so and so”…..and once in awhile I add in a “thank you for”….

I decided to take a little break from a ladies group I had been attending.  Well only like a week or two break but still.  Because all they seem to want to talk about is babies, kids, and their families or others kids and babies.  I have a struggle with this as someone with secondary infertility, and a teen who has left home early due to out of control behavior and mental health issues.  I really DON’T want to hear about your babies, other people babies or how successful your darling children are.  I really don’t.

So, that being said, the women in the group do mean well, and they had asked if I had any prayer requests.  Besides the obvious, I said that I wished God would bring a friend into my life that understood.

Someone who understands not one thing I am going through but ALL the things.  Through personal experience.  This is a tall order.

Someone that has been adopted, divorced, abused, abused again, remarried, whose husband has a destructive ex, stepkids who are not interested in a relationship, financial difficulties due to blended family finance, extended infertility issues, works full time, has a life altering degenerative disease and someone whose own child is no longer living at home due to a smorgasboard of issues.

Who on earth could fill this role as friend who understands through personal experience.  All the experiences.

Is there such a person?

In the meantime, I am praying.talking-to-god-is-like-talking-to-a-friend-on-the-telephone-we-may-not-see-him-on-the-other-end-but-we-know-hes-listening-prayer-quote

Happy Happy Happy!

So I am not stealing a Duck Dynasty line there….I am really focusing on being HAPPY! Maybe content is more like it.

I had the opportunity to sit in on some of the anger management sessions that are being taught to my teen. I have two new ideas that are going to help me in my own frustration department.

You may have read my earlier post, letters we will never send, written after many years of dealing with my husband’s crazy ex. What I learned fits in so well with this….first off, think of ABC.

There will always be an (A) asshole (think crazy ex for example) two there is (B) my own behavior…I can choose to be angry and upset and let it ruin my day, but I have the control and can choose to not let it upset me. To realize that assholes will be assholes. The (C) is consequence, if my behavior is to look for ways to make her miserable too then there will most likely be a consequence (ways to sabotage her run through my mind….but don’t want to wind up in jail lol) so the A will always exist, I can control the B and then there will be no C.

Another strategy is to change my mind in the here and now, so I am not using self talk and obsessing over how angry I am. Having someone ask me questions, what are five things you see? feel? hear? This forces my brain to leave its anger and focus on something else.

A few little tips to help me in my quest to not let assholes affect my day to day life.

So on to the Happy Happy Happy. de531944023f8a42ffbe178bb7995ee8

If you let it happiness could be dependent on what you think life should be.  My life will never be what I think it should.  What I dreamed it should.  That being said, I can look at the positives that I have that others do not.

I have a super awesome hardworking husband, an awesome job, supportive friends, a great church community, and my son is a blessing even through his challenges, a car, a house, food to eat (although getting sick of hot dogs…budget cuts you know).

Most important and above all the rest, I have a loving God who has carried me through the most challenging and painful of times, and He gives me the Hope to carry on through my Faith.

My challenge to myself is to come up with some goals, first being that I am going to try and spend half an hour each day in prayer, not necessarily a consecutive thirty minutes.

Second is a challenge that I need to start focusing on all the hobbies I have neglected while looking after everyone else.  Scrap booking (let’s finish those albums) and photography.

My third challenge is that I will share my photography or my blessings on this blog.  To become a more consistent and positive blogger, even if no one reads my blog lol.

I have more goals and challenges….things on my bucket list too but I will save those for another post.

Signed,

Working on being Happy, Happy, Happy!

Letters we will never send…..

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Sitting here on a rainy day…woke up with a horrible headache that won’t go away.

Just pondering life and why I have the one that I do.  Does everything in life happen because of our own choices? Is it karma? Is it God’s plan?  I think it’s a little bit of a, b and c.

At birth, our lives start out as a clean slate.  We are born helpless.  Some of us are privileged, some are born into poor families, third world countries, developed nations, healthy, sick.  We all start out differently.  As we grow, our environments shape much of who we become.

Then our conscious will enters the picture.  We start growing older, realizing that we will not be with our parents for the rest of our lives if we are able, independent adults.

We start making choices.  Some of those choices have ripple effects, for days, weeks, months and even years to come.  Sometimes things happen along the way that have to do with the negative impact of others choices, or even things that are no fault of our own….natural disasters, disease, crime, famine, war.

My life has been a series of errors, frustration and pain.  I have also been blessed beyond belief compared to those in other places.  I have a roof over my head, a car to drive, on weeks when I am really broke I can always afford bread, peanut butter, hot dogs and some sort of fruit.  My husbands job allows us to have a freezer full of red meat.  I have been blessed with a good job that supplies my needs, I am able to sponsor four children, supply my own child his needs, and send what is equal to a mortgage payment to my stepchildren each month so that they can have a roof and food.  And I can do this with a supportive husband, who works harder than anyone I know for little wages to contribute to these things as well.

Why should I not be happy then?  I feel like I am stuck in a life I did not ask for.  Through my own foolish choices, I became my own worst enemy.  The dreams and wishes I had for my life all went astray, and they have not returned yet.  I am working on it.

I chose an alcoholic for a first husband, one with mental health issues which have been passed along to my son.  I have been a great mom (not perfect by any means but one who tries more than most to do her best) to my son, who has severe learning issues, and mental health issues as well as drug addiction.  I have been a stepmother to two children who did not want a stepmom.  I have spent years driving them to and from school, one hour each way, leaving work early to accommodate their schedules, driving them to hockey practice, soccer, appointments. Racking up 600,000 km on my old car.  All while rarely seeing their dad as he was working so hard to contribute to our household and to send money to their mother. I have had health issues, depression, thoughts of suicide, bitterness, sadness, jealousy….the list goes on and on.

My biggest dream was to have a child with my husband, years and many tears later that has not happened.  At our ages it never will.  I am watching him still working himself to exhaustion to send money to an ex for his children that are now 21 and 17.  One out of school for three years and working but still living at home.

If I had to do it all over would I ?  I honestly can’t say that I would.  We are married, a couple in the eyes of the Lord, but what I am left with, is the remains and junk from someone else’s prior relationship, along with my own junk from mine.  We have three kids that want to go their own ways, be like their other parents, and resenting us because of how we try and guide them.  They want nothing of it or us.

My biggest annoyance, is and always has been his ex.  If I were able to send her a letter, this is what it would say.

Dear Devil.

From day one, I heard from everyone how horrible you are.  His family, friends,  I did not believe it.  No one can be that bad. Everyone has some good in them, I am sure you do. I am sure your life has not been easy.  But someone who is good, does not try to find ways to sabotage and destroy others.  They do not poison their children against others, they do not take advantage of others financially or otherwise.  They do not use systems in place to help people to their advantage and become lazy and not have to work an honest job.

When I chose your ex to marry, I did so with the understanding that I would do my best to be the absolute best stepmother I could be.  I would love your children like my own.  I found out that you cared little for them when they were young, preferring partying and sleeping around to being with your family.  I found out that you were negligent and saw first hand how you put yourself first.  I vowed to do my best to teach your children about God and his love.

I kept all the promises.

Before meeting my husband, you saw to it that he had two children “by accident”, unplanned, while supposedly on birth control.  I have had one pregnancy…planned while off birth control.  Your pattern of (now) three accidental pregnancies speaks for itself.  So taking care of two little ones while you were out and partying and finding attention from other guys, my husband took it upon himself to get himself fixed and make sure he did not have to look after a third child.  He was not planning on leaving his children, or you in his eyes marriage was no matter what.

Fast forward a few years, things in your woods were not changing, and adultery soon became your lifestyle. He married you because of the children and one year later you left…..again.  He was broken.  A few more times kicked out and he had finally had enough.  So he started a new life.  Soon I came into the picture (woohoo for me!) and I showed him what a relationship should look like, a caring loving one.

But the damage was done.  For many years, he was unable to fully open up emotionally, he was not able to work on our relationship as he was so damaged from yours.  He was at times mean, and bitter.

When it was time to try and keep his end of the bargain, try for a child of our own, I had to open up my bank account and wipe it clean to finance the operation needed for us to have a child biologically.  That was hard.  Knowing I had to pay for a situation that only existed because of you.  Life is not fair.  I found this out the hard way. The dreams we had for years then went on for many more years, medical procedures, counseling, failed adoptions.  A child of our own was not meant to be.

All the while I had to hear from your own children, how happy they were that you got pregnant not once but twice with your new boyfriend.  That you gave birth to a sibling for them.  Oh yes, the joy.  All the while sinking deeper and deeper into an dark dark place I could not get out of.  Realizing my dreams of having another child, giving my son a sibling were dead.  They were never to be. Wanting. To. Die. Every day for years.

Finally your children decided they no longer wanted to see us, the rules we put in place, the lifestyle we lived as Christians, they did not want to hear about.  Your poisoning words to them about everything we do.  Because your way is the right way.  Of course.

I can no longer let the bitterness inside me be there.  You are taking up too much space and I don’t like it.  You are not paying rent in my head so out you must go!  I no longer need to be angry.

I just want me back.  I want to live MY life with MY husband.

To love and live our dreams, both together and individually.  To be a family no matter if we have any kids in it or none at all.  To believe that life can be fulfilling and wonderful.  To fully embrace all my blessings, even if I do not see them each day.  To find a place of contentment in the Lord and all the things he has given me.  To be able to love, laugh and live.

You no longer matter.

Sincerely,

Blessed

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Ataxia

  1. a·tax·i·a
    əˈtaksēə

    noun

    Medicine
    noun: ataxia; noun: ataxy
    1. the loss of full control of bodily movements.
    So I have Ataxia.  Specifically inherited Ataxia which can be referred to as Spinocerebellar Ataxia, Cerebellar Ataxia or SCA (number known or unknown).

    My symptoms started almost five years ago.  It started when I was talking walks, I would get a dizzy feeling, I tended to walk with my head looking down (typical of those with balance issues…..at the time I didn’t think I had any) and it progressed slowly.  I noticed that I could not get up from my desk without being dizzy, I was also dizzy and off balance when I tried to exercise or doing any sort of house work.  Anything that had me moving around quickly.

    My family Dr. had no idea what to tell me, she thought it could be blood pressure related, (my fingers swell up considerably when I am hot or it is hot outside….had to get my rings cut off once already, heat really drains my energy) or she thought it was maybe an allergy or inner ear thing.

    I spent the next three years going to specialists and ruling out one thing after another.  Finally she sent me to an older neurologist (and by old I mean he had medical devices in his office that looked like they walked out of the 1940’s….seriously I wondered if I was in an old mental hospital or museum).

     By that time, I was having some ongoing serious eye issues.  In addition to the dizziness, my eyes were doing strange things randomly.  I was seeing double….to the point I had to close one eye to see while working and driving.  I also had “moving” eyes, which seemed to move upwards on their own when I tried to focus on something.  Or they just plain moved….many times I could not focus.  This seemed to come and go but was worse during periods of stress (stress was a huge part of my life at that point and this didn’t help).

    Back then I just wanted answers. So as the neurologist was looking at my eyes…they started dancing.  He said yes…I see.  Something is not right.  REALLY??!!  I’ve been saying this for several years now.  He could not pin point what was causing this but he said he would send me to an ortho neurologist.  A neurologist that specializes in the eyes.  There are only like 2 of those in my general area.

    I went through my history of symptoms once again with the ortho neurologist and after disclosing to him that my biological mother also has had these symptoms for a few years…he said I am pretty sure I know what this is.  Ataxia.  Inherited Spinocerebellar Ataxia.

    FINALLY! I had a clinical diagnosis (there is not test apart from genetic testing for this, and at this present time there are only around 30 types of SCA whose genetic mutations have been identified. The regularly done genetic blood test can search for and identify 12 types.

    I went home and googled Spinocerebellar Ataxia right away!  This is what I found on Wikipedia.

    “Spinocerebellar ataxia (SCA) or also known as Spinocerebellar atrophy or Spinocerebellar degeneration, is a progressive, degenerative,[1]genetic disease with multiple types, each of which could be considered a disease in its own right. An estimated 150,000 people in the United States are diagnosed with Spinocerebellar Ataxia. SCA’s are the largest group of this hereditary, progressive, degenerative and often fatal neurodegenerative disorder. There is no known effective treatment or cure. Spinocerebellar Ataxia can affect anyone of any age. The disease is caused by either a recessive or dominant gene. In many cases people are not aware that they carry the ataxia gene until they have children who begin to show signs of having the disorder.[2]”

    Really?  This does not sounds good.

    Luckily in my case, the disease seems to be slow progression.  I have had a definite worsening in symptoms the past five years, and there is no guarantee as to what my prognosis long term is.  However given family history it seems that I may never need a wheelchair.  That being said, the disease is different in each case.  For example my bio mom has worse balance issues than I do, and my eyes are worse than hers in some ways.  Our symptoms are a bit different.

    So what do I do now?  Take one day at a time.  Take my time.  Slow down.  Try and stay away from stress (ya right) and try and educate others on this rare disorder.  My fatigue is getting worse, I have never felt such exhaustion from just trying to get through each day.

    As for symptoms here are the most usual ones (of which I have most)

    • impaired coordination in the trunk or arms and legs
    • frequent stumbling
    • unsteady gait
    • uncontrolled or repetitive eye movements
    • trouble eating and performing other fine-motor tasks
    • slurred speech
    • vocal changes in tone, volume, and pitch
    • headaches
    • behavioral or personality changes
    • dizziness
    • Fatigue is a common complaint, likely because the muscles of the body have to work harder to overcome the lack of coordination to perform their daily activities.

    So while that all seems overwhelming…I know that I can continue to have a productive life, no matter what happens.  I strive to be as independent for as long as possible.  Most likely moving towards a walker at some point and giving up my drivers license, but who knows….maybe the symptoms will start progressing slower once I really start doing more self care.  My job is a big part of the stress, usually while on vacation I have very few Ataxia symptoms, my eyes get better and my balance is not too bad.

    Today is a bad day.  My eyes have cooperated enough to finish this post…but my exhaustion is here and my balance is not.

    One day at a time.

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Adult Coloring ?!

Given my dirty mind….the words “adult coloring” take on a whole new meaning.  But what adult coloring in fact is, is just that…adults coloring in coloring books. Like when we were kids, except these books are a little more intricate than the crayola ones we remember.

Apparently adult coloring is a thing. Yes a thing.  It’s so popular that bookshops can’t keep them on the shelves.

I first heard about it from a friend who works in the therapy field.  She suggested for my anxiety and depression that I try coloring.  I was like ya right.  I felt super embarrassed going into the local chapters looking for an “adult coloring book”.  Was too shy to ask where they may be….but then I happened upon a display.  A HUGE display.  Who knew it really was such a big thing.  And they even had colored pencils (or pencil crayons as we used to say in school).

I purchased my first coloring book right then and there.  It became a huge ordeal, I mean how does one choose between The Secret Garden, or The Enchanted Forest? One containing many detailed floral pictures, and the other full of trees and animals.  I opted for the latter, thinking that I may get sick of coloring flowers……but now I am sick of trying to shade in leaves.

After a few weeks of working on my pages, (it really does take along time just to finish one, it becomes serious business…I mean which color palette to use, should I use pencil crayon or marker on this page….or try shading by using both?!)

Given my somewhat addictive personality, I soon started shopping for other books, getting tired of the forest motif’s and found a Hipster book, Skulls, Peacocks and Flowers. (Thank you Michael’s Craft Store) IMG_1605

Coloring really does bring you into another world, there are studies (do a quick google search) that show it reduces anxiety and can help you become mindful-into the present moment.

The next project in my coloring journey (ok let’s not call it a journey….that sounds too new-age-ee…we’ll go with hobby) is trying to decide if I should invest in Prismacolor Premier color pencils (super expensive) as well as checking out some Dover publishing coloring books….apparently they are great and a wide range of topics (those flowers are going to fade fast).

I am now a full fledged proud adult coloring addict.IMG_1604