X: X factor

 

So what is it about some of us that makes us susceptible to these lovely and mostly rare diseases?  Is it genetics?  Is it environment?  Is it the right combo of the above?

I know for me that the fibro comes from one side, my mother’s, and the autoimmune can come from both.  My mother’s cousin has autoimmune in her eyes.  But four members of my dad’s family have autoimmune.  Oh and the migraines plague both sides. I know genetics plays a role.

I had mono when I was 14, I do know that the Epstein-Barr virus stays forever and has been linked to chronic fatigue.

I grew up in Pittsburgh, the former steel capital of the world, and I have swam in its three rivers, which will probably never, ever be 100% safe for human swimming.  Did some of that seep into my skin and cause this?

What is it about me that makes me a lightening rod for all these things?  I have always wondered that.  Maybe with all of the genome mapping and leaps in medical science I will someday get an answer.  It is just a curiosity.

My biggest fear is that Sunshine will develop my issues.  I truly fear passing down these illnesses to her.  I am super vigilant for anything that even resembles what I have.

I think I had inklings of fibro as a child.  I had horrific growing pains.  My arms and legs would ache for hours.  Just awful, awful pain that would bring me to tears.  I remember this even going into my teenage years.  And the next day they would disappear.  I can remember the pain to this day.

Also as a teenager, I can remember having “knots” in my back.  Really awful tender spots that radiated pain.  I just thought it was stress.  My boyfriend at the time was pretty adept at massaging those tender spots out.  I just thought it was par for the course.

So I am aware.

I wish that along with the specialness of these diseases, we could get superpowers too….

 

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Q: Quiet

 

Quiet. Solitude.  I’m one of those that need it.  I grew up in suburbia, leaning more toward the urban part of that word, but since I have moved to Texas, I have been enjoying the quiet and I think it is very beneficial to reduce stress and to promote health.

I haven’t meditated in awhile.  My “S” will be on “stress”, so you will see more on that there, but my current situation doesn’t allow for much meditation.  There are just too many people living in this house.  There is too much going on.  Four adults, one child, two dogs, one cat.  Too many creatures breathing in too small a space.

I’m writing this a few days in advance.  I woke up (not on purpose, as Sunshine have a nightmare about American Girl dolls chasing her last night) to watch the eclipse last night.  It was cold, and probably didn’t help my pain.  But I wrapped a blanket around myself and went out to watch it.

No one was up (at least for a little while).  I could hear nothing but the wind.  Even the neighbors dogs were quiet for the time being.  It was so peaceful.  It was something I needed.  That solitude.  That time to just relax and be.

And then my mom woke up to see what I was doing.

But it was nice while it lasted 🙂

Day 21

Memories:  Where have you traveled?

disney

I haven’t traveled much in my years on this earth, I hope to one day be able to afford to leave this continent.

I have been to Niagara Falls several times, and even into the interior of Ontario before.  Also Toronto.  I absolutely love Toronto.

I have been to Zihuatanejo, Mexico.  If you have seen The Shawshank Redemption, you have seen Zihua.  It is the beach where Andy finds Red at the end of the movie.  Very beautiful.

I have been to the Caribbean…specifically Puerto Rico, St. Thomas, and Labadee Haiti.  On a cruise for my grandparent’s 50th anniversary.  It was amazing.

And in the U.S. I’ve been to Gettysburg, Philly (duh), NYC, Myrtle Beach, Disney, Washington D.C., Chicago and all of the states between PA and Florida and from Florida to Texas.

I want to explore the western part of this state, I have never seen a desert before.  I would love to go to New Mexico.  And Hawaii is definitely on that list.

florida

 

Day 4

Your Favorite:  5 blogs

This was tough.  I have so many varied interests and if I sit in front of my computer too long, I’ll go down the blog hole and then two hours are gone.

So here are my favorite blogs, in no particular order:

Lethargic Smiles – Jackie is a young lady with chronic illness.  Her blog serves to discuss her journey as well as to educate.  Very well written.

Life with Sarcoidosis – this blog was very informative when I was first diagnosed.  This gentleman has sarcoidosis, which the doctors think is a possibility in my case.  His posts help me understand that I’m not alone.

Stant Litore – This man is the author of some very amazing books, The Zombie Bible series.  Just the title alone intrigued me.  And then his lyrical prose, his vivid imagination reeled me in.  I like this blog because he writes about the process of writing these books.

Healing from Complex Trauma and PTSD – I originally found this page on FB.  I have PTSD as a result of abusive relationships and this page provided information that even as a nurse, I didn’t know.  The author also encouraged those of us with PTSD to take care of ourselves.  I absolutely love this page and how it has helped me.

Battered Wife Seeks Better Life – This is a very honest account of what it is like to still be in an abusive relationship.

Happy birthday Sunshine!!

barbie

These are the cupcakes I made for her “kid” party.

 

Sunshine turned 7 last week.

I am just now recovering.

I am thrilled that everything went well for her (and us).  People behaved for the most part.  Sunshine behaved and was a gracious guest.  Her friends were wonderful.  I’m so lucky to have wonderful friends who helped as well.

She had a spa party.  Four little girls here for five hours.  Wow.  That was fun.

She loved it.  The woman that did it was absolutely fantastic.  She was very friendly, very patient, even when the girls decided to have each hand/foot painted with different colors of nail polish.  Some wanted specific patterns.  And the lady was so fantastic.

sunshineShe brought EVERYTHING with her, including a table, all the craft supplies, and even chairs for the girls to sit in during their manicures.  That is what I wanted.  I wanted to do this for Sunshine, but with my health, I couldn’t commit to doing it all myself.

Sometimes with chronic illness, you have to sit down and decide what is more important:  saving money, or saving your health.

And I am incredibly happy that I hired someone to come in and do this.

I just watched her do her spa party thing.

I also had one of my friends come over to help referee the girls.  But it wasn’t needed, the girls were so well behaved.

And afterward, one of the moms stayed over for awhile and chatted.  That was so nice.  And I didn’t have to clean up a huge mess.  I am so happy I did this.

The next night, we had family over for cake and appetizers.  It was so nice.

I did text Sunshine’s birth father.  Not to have him contact her, but more to remind him that she exists.  For some reason, that is important to me.  I still haven’t had an actual phone conversation with him in 18 months.  He doesn’t respond to any of my texts.  I occasionally send him pics of her.

I just feel that he has a right to know how half of his DNA is doing.  I know I’m being way too nice.

Sunshine is doing better with that issue.  She is still seeing a counselor.  She asks occasionally if I have heard from him.  I always ask if she wants to talk to him, and she says no.  She is mainly concerned because she got to know her stepsisters and half sister, and that contact was abruptly cut off.

She wants a sibling so bad, so I understand her desire to have a connection to them.  She speaks with her stepbrother on the phone regularly.  And they spend every summer together.  But the idea of having “sisters” is so appealing to her.

It’s been seven years, and I am still in awe of her.  As she has grown, I am impressed more and more with the lovely little lady she is becoming.  She is smart, friendly, happy.  A bit sassy.  She understands things way beyond her years.  She is so kind.  I am so lucky to be her mama.

Sometimes I just look at her and it brings tears to my eyes.  I can’t imagine my life without her.  She has changed me in so many ways for the better.  By being her mom, I’m a better person.  I’m more patient, I’m less impulsive, I really don’t care what others think of me.  I’m fine being silly with her at the park or at the mall.

I love the conversations I have with her.  I love how she tries to figure things out.  I love being witness to how her brain works.  And she is hilarious.  She isn’t afraid to be herself.  She isn’t afraid to be silly, to pretend to be a cheetah (or hyena, or wolf, or lion) in public.  She isn’t afraid of being a “tomboy”.  She likes to make a mess, to laugh at fart jokes, to wrestle with her daddy and brother.

I hope she never loses that part of her that isn’t afraid of what others think.  I know the years ahead are fraught with image issues and friends and gossip.  I just hope she retains her sense of identity.  Stays grounded to the person she is at her core.

I hope that I continue to be an awesome mom.  That I say the right things at the right time.  That I make sure she feels loved and cherished every day of her life.

So happy birthday, Sunshine!!!

cake

 

 

 

Thankful

It’t that time again.

Honestly, I’m thankful everyday for what I have and who I have in my life, but sometimes it’s good to write it down.

This year, I am exceptionally thankful for my husband.  It has been a very dramatic, traumatic first 17 months of marriage.  We are just starting to crawl out from under the ruins of the last year.  He recently got a new job (with benefits!) and he is still working his second job.  I am truly thankful that he takes such good care of me and Sunshine.  I am thankful that he tries to understand my medical issues and also advocates for me.  He never hesitates to tell me to take it easy, to rest, to avoid a certain activity that he KNOWS will result in more pain or a migraine.  I am truly blessed to have such an amazing partner in life.

Of course I am thankful for Sunshine.  She is growing into the “sassy” stage, and even with her talking back, it is hard to keep a straight face sometimes because she is so darn cute!!  She is so loving, so warm.  I love watching her grow and learn.  She has such a good heart and loves everyone.  Today she said “Mama, you know what I’m thankful for?  You.  And that you are getting better”.  Melt my heart.

I am thankful for my friends.  I have some amazing friends that have  been tremendous over the past year.  I have had people that helped me with Sunshine in the morning, friends that make sure I’m getting out of the house, friends far away who just call to see if I’m ok.

I am thankful for my parents.  Even with all that is going on, the daily chaos, we would seriously be without a roof over our heads if they decided not to let us come and live with them.  They do try to help me with Sunshine and are wonderful grandparents.

I’m thankful for the internet.  Through blogging and FB, I know that I’m not alone in this.  That there are other people out there who have what I have and graciously share their knowledge and experiences.  They listen when other people have stopped.

And I’m thankful to still be off of chemo and steroids.  Its been six months for the methotrexate, three months for the steroids.  And despite the fibro symptoms, I feel pretty good day to day.  A year ago I could barely get out of bed.  Now I’m exercising, cooking, taking Sunshine places.  I hope to be able to stay off of those horrific meds and to continue to improve.

What are you thankful for?

The truth hurts..

So Sunshine’s absentee father found my blog.  And he is not at all happy with his portrayal.  

I would like to point out that the child has not had ANY communication with this man since July 21 of last year.  He also blew off a scheduled visitation with her two weeks later.

Imagine what it was like for me…just started on chemo…just came home from supporting my husband as he buried his mother…and having to try to come up with an explanation to my five year old as to why her Daddy didn’t show up to visit with her.  Fun times.

The last 15 months have been difficult.  If you are reading this blog, you already know that.  

Sunshine still occasionally asks about him and her stepsisters and half sister.  I have no answer for her.  All I say is “he is making different choices right now”.

I’m still not clear what prompted his sudden interest in our child.  I did briefly have a text conversation with him that basically solved nothing.  

No reason for the disappearing act.  No apology.

And no inquiries to Sunshine’s well being.  None.  Not a request for a picture (I did send one) no musings on how she is doing in school…no questions about her as a person and how she is growing up.

Apparently he has found God and is praying for me.  He informed me that God will deal with me.  Nice.

This little conversation completely reinforces my decision to leave.  

One day she will have more pointed questions.  And I will show her the reams of email messages, transcripts of text wars.  

I still have my wedding album from my first wedding, along with some of his old pictures.  I still want her to know where she came from.  He is half of her.  And she will be curious one day.

I am eternally grateful for my dad and my husband.  They both have amazing relationships with her.  She also had a great relationship with my grandfathers.  

Positive thinking:  I worked all this week.  I have new floaters in my eyes, but I don’t know if they are old floaters or new ones.  I’m trying to hold out until my appointment with the eye doc at the end of October.  

Things are going smoothly at la casa de mi familia.  No one is dead yet, the cops haven’t been called, and the cat and the dogs are getting along…but keeping their distance.

Sunshine loves her new school.  She seriously just asked me to make up more math problems for her to put in her homework journal.

Despite the circumstances, things are going pretty well.

 

Addictions

One thing that those who have never been “sick” can’t understand is the dependence on medications.

I have been on antidepressants since I was 16.  I have been on them all at one point or another.  Right now, its Zoloft.  It has been working, keeping me on even keel for the past two years.

With all that has been happening, my lack of health insurance, and lack of funds, I have been without it for the last week.

Part of me wants to be that “strong” person that my family wants me to me.  I hate being beholden to medications.  I hate the fact that I’m not “STRONG ENOUGH” to overcome my depression issues and be med free.  Every, single time I have tried to come off antidepressants, it has ended badly.  Why did I think I could succeed this time?

With my grandfather’s death and subsequent fallout over this site and my gofundme site (oh yes, Mommy and Daddy started reading this blog.  They are not pleased) I again tried to be “STRONG” and “PULL MYSELF UP BY THE BOOTSTRAPS” and white knuckle it off of Zoloft.

Yes, I know better.  But part of me wants to just try.  And it always ends badly.

So, I’m still dealing with my grief (which I haven’t really had a good cry about).  I have had stomach issues since Monday.  Muscle issues since yesterday.  Sleep is elusive, regardless of how much Benedryl I ingest. I am an irritable, irritable monster right now.  And I hate it.  It’s clear that I NEED to get back on this medication.

My concerns:  1) I haven’t seen the prescribing doctor in nearly a year.  They might not refill. 2) My PCP is also owed money.  She might not refill this med at all because she isn’t the original prescriber and because I owe her money 3) There is a waiting list to get into the local health clinic.  I  do not qualify for free care from this county (but if I moved 10 miles away, to Travis county, it would be no problem).

So, I just put the call in.  Waiting for a response.

I also haven’t heard back from my rheumatologist concerning Cellcept v. Plaquenil.

I called that office and was told that my rheumatologist wants to consult with my eye doc before making treatment decisions, which is understandable.  But he hasn’t called back yet.  It has been over a week.  I think he might actually be out of the country.

So I have that office calling the eye office back.  Jesus.  Its like a full time job where you pay someone else instead of getting paid.

It’s just a bad day today.  Rent is looming over my head.  My parents aren’t back yet from Pgh, but my mom is keeping me updated on how bad my grandma is taking it.

She has Alzheimer’s, and apparently she was sitting next to the casket at the funeral home, trying to wake up my grandpa.  She has a broken heart.

This news has done wonderful things for my mental state.

I’m sorry for another negative rant, but its really hard right now.  Its one thing to be just tired.  But to have diarrhea, nausea, muscle pain, irritability on top of the usual pain and tiredness, its unbearable.

Please, please consider donating to my gofundme site.  I never thought it would come to this, but I basically have no choice.

http://www.gofundme.com/3ciaqc

Thank you for reading.

Build-A-Bear and other devices of torture

Yesterday I went with Sunshine to her “Build-A-Bear” party for Girl Scouts.  I endured walking through the mall, going to Gattiland (its like Chuck E. Cheese without the annoying mouse) and attempting to socialize with the other moms.

I feel so out of place with this crowd.  Sunshine goes to Girl Scouts in the area where my parents live.  Its the same town, but my parent’s street has several million dollar homes on it (not theirs).  So the kids that are in Girl Scouts with Sunshine are wealthy.  And the moms rarely talk to me.

My mom is the one who usually does the Girl Scout stuff with Sunshine, but every once in awhile I have to take her to meetings or activities.

Most of these women have no clue what it is like to struggle.  The majority don’t work, they aren’t sick like me, their husbands make enough money so they don’t HAVE to work.  Must be nice.

But Sunshine had fun.  The party was funded with their cookie sales.  Sunshine sold over 100 boxes of cookies.

Sunshine made an all white kitty.  With pink high heels.  She named her “Sweet”.  Absolutely adorable.

I was horrified at the costs associated with making a teddy bear.  The girls earned enough that they could get a bear with one accessory or outfit.  But we had the option to buy more.  Which I couldn’t help with due to the whole “we might get evicted” thing.

There were girls that easily spent $100 dressing up their teddy bears.  I saw one “my little pony” stuffed animal that was decked out in rollerskates and a cape.  Seriously.

Although I feel bad that I can’t provide this for Sunshine, I’m glad that I am home with her everyday.  I couldn’t do that if I was working.

And she doesn’t notice the differences in finances.  She just knows that mommy is sick and because she is sick she can’t work and that when you work, you make money.

I hope when she grows up she remembers that you don’t have to have tons of money to be happy.  We do activities that are cheap or free.  We often take our own food because eating lunch or dinner out is very expensive.  We appreciate the times in which we are treated to activities we wouldn’t normally do or places we normally wouldn’t go because we know that without someone’s generosity (usually my mother’s) we probably wouldn’t be going anywhere.

Positive thinking:  Sunshine is learning that money isn’t the end all and be all.  She has a mom that is home with her instead of working her ass off trying to chase money.  She has a wonderful bonus daddy that is willing to put his dreams of becoming a nurse on hold so that he can get a full time job and take care of her mother.  She observes the way a healthy marriage operates every day of the week. I couldn’t buy this type of exposure for her.

Sunshine’s nose is growing

pinocchio

We have now reached the age where Sunshine is learning the difference between lying and telling the truth.

And true to form, the child is learning the hard way.

Recently she has been telling minor “fibs”. She outright lied to my mom a few weeks ago when she was told to put her clean clothes away. My mom found them on the floor in another room. When Sunshine was asked about this, she said that my Dad did it. Interesting..

Yesterday she was playing dress up with one of her friends. She has a nice collection of dress up clothes and those horrific plastic high heels. She asked if they can go out on the porch. Because I live on the second floor I told her she had to stay on the porch. I really didn’t want to take the child to the emergency room when she tripped down the stairs on those horrible shoes.

No later than five minutes passed before my neighbor downstairs (and a few apartments over) texted me a pic of Sunshine and her friend, in full princess costume complete with the dreaded shoes, smiling in her living room.

It gets better.

When she got back up here, I asked her if she left the porch. “No Mama, I listened, I didn’t leave the porch”. I asked her if she was telling me the truth. She stuck with her story three times. Then I called her over and showed her the pic.

Her face was priceless.

And she was grounded for the rest of the day.