Alone

Sometimes I feel so alone.

In my illness, my life and my family.

I could be surrounded by people (like I am now) and still feel completely and utterly alone.

Yes, I have friends.  I have support of my husband.  But when my husband is mad about something that is out of my control at the moment (but essentially my doing) I feel like I’m an island in the middle of the south Pacific.  And with him working nights and sleeping most of my waking hours, it is like an acute pain.

I’m with Sunshine a lot.  I love being a mom, I love reading to her, doing things with her.  But she is six and doesn’t understand why Mommy is sad.  And I can’t (and probably never will) confide in her what goes on in my head.  No child should have to bear the burdens of their parents.  I know this well in my own relationship with my mother.

My friends.  Well, most of them are completely healthy.  They have no clue what it is like in my body.  Why I have to do the things that I do.  Why I can’t eat, drink or do certain things.  And they constantly try to fix everything.  I understand the gesture.  I do it myself often enough when friends confide in me.  But sometimes I know what I’m going to do, how I’m going to remedy something.  I just need to confide in someone.  To get these feelings out before they consume me.

My parents?  Forget about it.  I’m lazy.  I fuck up constantly.  I’m a disappointment.  I’m a failure as a mother.  They sometimes directly say this, but most of the time it is subtle actions and snide remarks.  Or my favorite, the silent treatment.

So right now I feel completely, utterly useless.  Alone.  And the emotional pain is too hard to bear sometimes.

I am seeing my therapist for the first time in over a year in the coming week.  I now have health insurance.

I know its depression.  But I’m trying to fight it.  To rise above it.  To go on and do things when I would much rather stay in bed all day and disappear into a book.

I’ll cry about it in the bathroom soon.  Then I’ll suck it up and go swimming with Sunshine.  I have a child to raise.

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?

A fibro Thanksgiving

I think I overdid it.  Again.

Left knee is KILLING me.  It is a stabbing pain in the middle of my knee cap.  I don’t remember twisting it or jerking it.  So I’m taking it easy today (at least exercise wise) while I try to figure out what is going on.

I didn’t really contribute to last year’s Thanksgiving, because I was too sick.

This year, I’m doing the stuffing and the mashed potatoes.  Oh and I made Steeler cupcakes because they are playing tomorrow night.  And my family loves the Dallas Cowboys.  Just have to remind them who has the most Superbowl wins.

I make my stuffing and potatoes from scratch, so I’m trying to do as much as I can a head of time.

Also, my mom is determined to make this “the most perfect Thanksgiving in the universe” so she is running around here like a turkey with their head cut off.  I think she has rearranged the dining room three times now.

We are expecting around 20 people.

So I did the cupcakes this morning.  It was also a practice run for the cupcakes I’m making for Sunshine’s upcoming birthday.  I just wanted to make sure they turned out ok before the big day.

I chopped the celery, herbs, onions and garlic.  My eyes are still watering.

Sunshine is the “bread” girl, in charge of putting the bread out to stale and turning it over to make sure each side stales evenly.

My mom is doing the turkey, and the rest of our guests bring something.  It should be fun.  I just hope that people can behave for company.

Good Lord.  The several hours I spent on my feet already have NOT helped the knee situation.  No swelling.  Just pain.  I hope it isn’t indicative of something more seriously wrong.  Like RA.  Hopefully it is just overuse.

I’m learning to shake off the constant criticism.  I was asked to clean the bathroom, and again, I explained that I already agreed with my husband that he would take that duty, since the chemicals give me a migraine.  Again, she pretended not to remember that very specific issue I have with strong smells, especially chemical ones.  So I continued with the prep that I CAN do.

If I hear “it is my house, I’ll yell when I want to” one more time, I think I may start yelling.  She yells at inanimate objects, the animals, us, Sunshine.  I don’t want Sunshine subjected to the constant yelling.  Its not good for her.  She is beginning to have issues in school, and recently confided to her teacher about all the stuff going on in the house.  I have a meeting scheduled next week with both her teacher and therapist.

I’m debating on if I should even broach the subject with my parents.  I don’t want Sunshine to continue to suffer, but I’m concerned that voicing my complaints will earn me a spot at the homeless shelter.  I have been threatened several times with expulsion for seemingly minor infractions.

So I hope tomorrow goes well.  I hope that the police don’t need to make an appearance.  I hope that my mother remembers she’s an adult, and that others are entitled to their opinion.  Judging by the screaming match that erupted at dinner the other night (about the news reports of the “knockout game”)  I am really concerned.

Hope you all have a pleasant, pain free, fatigue free holiday!!

PS:  I’ve dropped 20lbs since August!!

 

“Good” pain

Things in my house haven’t gotten any better.  If anything, they are worse.  Which is probably why I’ve been to the gym four times this week.

And it HURTS!!

I don’t think its pulled muscle pain, more like “I have fibro and I’ve been to the gym” pain.

With fibro, any kind of muscle exertion hurts more and way longer than it would to a “normal” person.  Which is probably why the past few days have been so much fun.

I’m taking a break tomorrow and probably on Sunday, I’ll get back to it on Monday.

Its nice to know that it is possible to have this level of physical activity with fibro and not keel over.  The pain isn’t fun, especially in my quads.  Getting up to standing from sitting is awful.  I’ve been popping Tylenol for the past few days.

But it feels really good about halfway through my workouts and for a few hours after.  I come home right away and take a hot shower.  And I hydrate.

I’m sleeping better too.

So I’ll probably continue this trend.  It gets me out of the house, it helps with the aggression I’m feeling toward people in my household, and its having good side effects for my health.

Boxing

If I didn’t have fibro, I think I would do the boxing thing for exercise.

My husband has been boxing at a local gym for the past two years.  His main goal was to help lower his blood pressure and to get in better shape.  He has succeeded.  And he looks AMAZING.

I have always been wary of going with him due to the fibro.  I KNOW any extreme exertion can put me in pain for a week.  But yesterday, I needed to do more than exercise.

I need to get out some aggression.

So I went with my husband.  The warm-up nearly killed me.  Jogging with medicine balls.  Over the head.  Wow.

When we started the actual sequences of boxing moves, it got better.  I threw my entire being into punching that bag.  I almost cried, I was so emotional.

It felt incredible.

By the end of the one hour, I was out of gas.  I still tried to keep up with the ab exercises, but I couldn’t do them with the medicine ball.

Wow.  That was one hell of a work out.  I honestly don’t think I have ever done something so exerting in my life, other than giving birth.

It did more for me than just exercise my muscles.  It helped exercise some of the pent up rage I didn’t know I had buried deep down.

I came home, took a hot shower, hydrated.  I took a short nap.  I spent the rest of the evening resting, hydrating, stretching.

Even then, I still had a migraine (a right sided one, which is rare and extremely painful).  I think it was from the dehydration.

Today…dear God.  Every single muscle in my body is screaming.  Especially my quads and hamstrings.  I’ve been popping ibuprofen since late last night.

The pain is incredible.  I’m about a 7-8.  All over.  But sometimes its a “good hurt”.

I’m planning on exercising later today.  I’m hoping to push through it and exercise the pain away.

But I did it.  I survived an entire hour of extreme exercise.  And I’m still alive.  I didn’t give up.  I didn’t puke.  I can’t tell you how good it feels to accomplish a goal like that.

I am probably not adding boxing to my limited exercise routine, but just knowing that I did it, and that I didn’t require a trip to the ER, it makes me feel like I can do anything.

It’s akin to how I felt after I gave birth to Sunshine.  I was diagnosed a year prior to her birth.  At 23, my body routinely failed me, and I was scared that I would never get pregnant, that I wouldn’t be able to carry a child to full term.

After a very uneventful labor, I had a healthy, pink bundle of happiness wriggling in my arms.  I couldn’t believe that I did it.

And that is similar to how I am feeling right now.

I did it.  And I’m going to continue to do it.

The literature on the benefits of exercise is staggering.  I hope to continue this path, that I can continue to heal.

I feel that exercising is helping me deal with my current living situation.  I’ll have more on that in another post.

Thank you all for your positive vibes.  It is greatly appreciated.

Positive vibes

I’m not a particularly religious person.

I grew up Catholic, but I no longer believe in the basic teachings of that brand of Christianity.  The new pope has made me hopeful that I can one day return.

I consider myself more of a spiritual person.  My work with the dying as a nurse has cemented a belief in some higher power, some sort of afterlife.  Things that we can’t see with our human eyes.

On FB, I don’t ask for “prayers” for a difficult situation.  I ask for positive vibes to be sent in my direction.

And I need them now.

The living situation is unbearable.  I can’t do anything right.  I’m  a horrible mother.  I have to take the verbal abuse without question (she actually said these words to me).

My parents are splitting up.  My dad is just content to wait out the end of the lease.  Which is in March.

My mother seems hellbent on forcing some sort of conclusion before that time.

The everyday pokes, jabs, verbal sparring is taking a toll on my health.

Which only fuels her fury more.  I’m lazy.  My daughter is being forever harmed because she is seeing the effects of chronic illness first hand.

Just the way she provokes me is starting to trigger some really really bad things from my past.

So I lock myself in my room and cry.

I’m still mourning the loss of my relationship with my mom.  That essentially came to an end the day my grandfather died at the end of December 2011.  Her callousness, her lack of compassion for my family and especially my father showed me that she is not the person I thought she was.

I have processed that event, that realization in therapy.  It is just hard.  She’s my mom.

So I’m asking for positive vibes,  a prayer if you are so inclined.  I really need it.

Note to self: you are 31, not 21

The Los Lonely Boys perform at Austin Fanfest in Austin, Texas 11/15/13

The Los Lonely Boys perform at Austin Fanfest in Austin, Texas 11/15/13

 

Ugh.

I’m recovering.  Again.

I went out Friday night to celebrate my friend’s recent liberation from an oppressive, douchy, Kentuckian regime.  It is also race weekend in Austin.  Perfect time to meet people from all over the world.

And one of my favorite bands on the planet was playing a free show.

So I ventured out, in my cowboy boots, into downtown Austin.  The boots were a mistake.  I always say that, yet I always like wearing them.  Ugh.

The concert was amazing.  Music is a very potent part of my life, and the Los Lonely Boys (especially their debut album) have played a significant role.  I have seen them five or six times in concert, and I love it every time.

After the show, my friend and I hightailed it up to 6th street to party with the thousands of people in town for the race.  Apparently Austin has the only Formula 1 raceway in the United States, one of three in this hemisphere from what I understand, so race weekend is a big deal.

We met Brits, Aussies, Ruskies, Frenchies and Mexicans from Mexico.  Not to mention the domestic partiers who were just in town to party and had no clue it was race weekend (California and New York).

It was a blast.  I love talking to people from other parts of the world. I have no idea how many times I said “I would love to go there” about someone’s hometown.

I learned that French women aren’t all thin, Brits hate being called “Harry Potter”, and the Mexicans from Mexico are completely different from the “Texicans” here.

And we were treated to several different impression as to what they thought all Texans were like.  Think “yee haw” and guns.

I also learned that I shouldn’t do jagerbombs.

Or shots of tequila.

What is very interesting to me is that 10 years ago when I was supposed to be doing this stuff, I was under my own oppressive, abusive regime (but one from Fayettenam, Pennsylvania).  He was nearly a decade older and had already “been there, done that” so therefor I was not permitted.

It is wonderful to have the freedom, support, and love of my husband that I can go out with my friends, make some poor health decisions, and not be guilted into oblivion because of someone’s jealousy and insecurities.  My husband texted me “have fun honey, be safe”, whereas my recently liberated friend was STILL harassed via text by her ex.

And I reciprocate as well.  Everyone needs time out to relax and have fun.  And alcohol isn’t evil in a safe environment.

We were completely safe, took the train down and a cab home.  And due to the jagerbombs (Jagermeister and Red Bull) I twilight slept for maybe three hours.  Total.  My heart didn’t stop pounding until last night.

And I was unable to get my tattoo.  I was honestly concerned about the blood thinning properties with the alcohol.  So it has been rescheduled.  And I will definitely post pics of the artwork.

Lessons learned:  Red Bull is the devil.  Cowboy boots should not be worn down town.  Race week is fun and I have an amazing friend.  And I’m getting OLD!!

I survived the gym!!

I am so happy with myself right now.

I felt like hell this morning.  It was frosty outside, and my muscles and joints DID NOT want to cooperate.  But I forced myself to go to the gym.  And I didn’t die.

I did 25 min on the treadmill (walking) and 10 minutes on the bike.

And now I feel a ton better.

Now to take a HOT HOT shower to make sure my body doesn’t stiffen up again.

Body art

I got a tattoo when I was 17.  Its a tramp stamp (just like everyone else of that era).  It hurt, but it didn’t scar, didn’t get infected.  I probably had some hints that my body wasn’t normal at that time, namely the intense shaking that wracked my body during the application of the tattoo, but I was blissfully unaware of my eventual chronic illness(es).

I have always wanted another one (or more). Not  because I like marking up my body, but I feel that it is a form of self expression.  I vowed never to get cartoon characters, questionable quotes or anything I wouldn’t want on my body for infinity.

My brother’s friend has a tattoo of a condom wrapper on his hip.  Classy.  That is not me.

One of my friends is an artist.  She is having a “tattoo party” this weekend, and I’m scheduled to get one.  She drew me the tattoo that I want.  Sunshine.  I think it is very fitting.

I’m planning to get it on my upper back, between my shoulder blades.

I have been reading up on tattoos again, and the issue of autoimmune disease came up.  I’m asking the tattoo artist if he is comfortable doing work on someone with my health history.  I haven’t heard back yet.

I guess the main issue is scarring.  Again, it is not know exactly what I have.  I have an autoimmune disease that is primarily affecting my eyes, but they are unsure if it is localized to just my eyes.  I do scar and keloid, but I did that prior to diagnosis.  I had no problems getting my initial tattoo.

I am not currently on steroids or any other immunosuppresants.

Any stories y’all want to share?  Anyone get body ink after diagnosis?  Thank you!!

More questions than answers..

Saw the eye doc today.

Good news?  Inflammation is under control.

Bad news?  The other things he noticed (namely the inflammation of my lacrimnal duct in BOTH eyes) may strongly point to sarcoidosis as being the definitive diagnosis.  Or it could be a completely NEW diagnosis.  Oh and the cataract in my left eye (as a result of the steroid injections) is significant enough to warrant surgery.  Probably in the next year.  Oh and the meds he prescribed for the stabbing pain in my eyes caused by the lacrimnal duct inflammation is $150.

So, again, I am frustrated.  I still don’t have a definitive diagnosis.  He uses the terms “pars planitis” and “ocular sarcoidosis” interchangebly.  I have not had the definitive biopsy that would once and for all settle the sarcoid question.  I’m not keen on getting a biopsy of my eyeball, my doc isn’t keen on doing one either.

But if I can get better treatment by having an ironclad diagnosis, then I’m all for it.

I’m sick of “well, it could be this” or “it could be this other thing that we haven’t mentioned yet”.  I’m sick of the roller coaster.  I just want this to be over with, but I’m realistic that I will probably be dealing with this for the rest of my life.

I feel like hell.  Have been for the past three weeks.  It is hard to tease out what is fibro and what is worsening autoimmune.  I asked the doc and he said its probably fibro.

I just don’t want to go blind.  I know that is a possibility.  As a nurse, I am also aware that doc frequently miss things or think it is one thing and it turns out to be another.

So basically I’m confused.

I know that my vision is worse.  Especially in my left eye.  It is “foggy” on the inside.  I am constantly wiping off my glasses, thinking that they are smeared.  Most of the time the fog is IN my eye.  My night vision is worse that its been since this summer.  And the sun sensitivity is still problematic.  And I now have eye pain.  That is the lacrimnal duct inflammation. It feels like a knife through the top left part of my eye.  Pleasant.

My next appointment is after the holidays.  The doc is comfortable that nothing will need to be addressed before then.  He is also going to confer with my rheumatologist to see if she feels anything needs to be examined further at this time.

Sigh.