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 🙂

Advertisements

O: Optimism

 

I do believe that having a positive outlook can make a difference.  Despite all my bitching on here and occasionally on FB, I do try to see the bright side.

What I have taken away from this most recent bout with illness is that I was there for my husband when his mother passed away suddenly in 2012.

If I were working full time, I wouldn’t have been able to be there for him all those weeks when he was stuck in his home state and I was in Texas.  I would have been working extra hard, wouldn’t have been able to answer his calls 24/7.

At the same time, my daughter was going through a crisis with her birth father.  I was home for her.  I was here and although I was sick, we had tons of “Mama-Baby” time watching movies, playing at home, occasionally going to the pool.  I feel that if I wasn’t sick, I may not have been able to give her the attention she needed at that time and throughout her first year of school.

Being sick has made me slow down.  Right before I got sick I was working at least 60hrs per week.  I was making money to pay for my wedding.  It was unfathomable to not have internet, not have cable, not have two cars, not go out to eat at least twice a week.

But slowly as my financial fortunes changed, my outlook on life has changed.  I really don’t NEED all of that.  I was never someone to be very materialistic, but having things stripped down to the bare minimum, and beyond, really helps you realize what is important.

So one thing that chronic illness has definitely given me is the ability to be more of an optimist.

M: Medication

 

I hate the fact that I require chemicals ingested into my body on a daily basis to live a pain-free, comfortable life.  I have this fantasy (a goal, actually) that I can get off of the meds in 10 years.  That may or may not happen, but it is nice to think about.

I have been on some sort of medication every day to control either migraines, depression, fibro or autoimmune disease for nearly 20 years.  That’s a lot of medication.

My record for consecutive days without medication was 10 weeks when I was pregnant.  By the end I was so anxious, so wound up, couldn’t sleep, etc that they wanted me on something.

I hate being beholden to something like this.  The thought that my body would go completely haywire if I didn’t take my meds.  I have tried, unsuccessfully, plenty of times to wean off, but it is usually ends in disaster.

I’m not going to go into details on what I currently take or what I have taken, but I will say that Lyrica does work for me.  I have been on it for 6 years and after I got over the initial 6 weeks of adjustment hell, it is well worth it.  It was like I woke up one morning and the pain was turned down.  It is not like I don’t have fibro pain, I do, but I am able to function better with it.

I was on methotrexate for almost a year.  That was a horrific year.  I blogged about it plenty in this forum.  Yes, it was a low dose chemo.  But I am so damn drug sensitive that it completely depleted me.  I felt like the tin man.  I could feel it seeping into my cells.  It was awful, and I will do anything to stay off of that med and off of steroids.

I absolutely refuse to take the heavy hitting narcotics for my pain.  When I was first diagnosed with fibro in 2005, all I knew about it was the few patients I had in the ICU with it and their uncontrollable pain.  These poor ladies would come in and have med lists as long as my arm.  They would be in a flare and they were so drug tolerant that nothing would touch them.  I was terrified when I was diagnosed, and I decided that I would never look to opioid narcotics for daily pain relief.

I do have a script for tramadol that I use very, very sparingly.  Probably less than twice a week.  But I refuse to ask for a script for hydrocodone, percocet, etc.  I feel that those sorts of meds are best for acute pain, not chronic pain.

I have nothing against people who do use those meds, but I do feel that there are better ways to manage chronic pain, and that chronic pain is woefully treated in this country.  I do feel that chronic pain can be treated better if certain substances were taken off of the schedule I list.  I also feel that other non-pharmaceutical treatments can be used for pain, and I do use them myself.

Just because there is a pill for that, doesn’t mean we have to take it….

L: Love

 

I have other plans for “M” so this post goes here.  And since marriage isn’t an equal right *yet*, it is unfair to put this post in that category.

Chronic illness wreaks havoc on one’s love life.  It played a pretty major role in the devastation of my first marriage.  I think I would have eventually figured things out, but my diagnosis definitely helped me see his true colors a lot sooner.  So in that case it was sort of a mixed blessing.

With my second marriage, my husband knew me in all stages.  Pre-illness #1, pre-illness #2 and he has loved me and stood by my side as a friend or lover through all of them.  I remember talking to him on the phone while hospitalized during illness #1 (while married to husband #1).  He was puzzled why my husband at the time wasn’t there talking to me. That should have given me all the answers I needed right then.  Not once during that hospitalization or subsequent ones did he EVER stay more than an hour or two in the hospital.  Including the birth of Sunshine and HER brush with illness when she was three months old.  Some people just don’t do well with those types of situations.  You find out who they are after a life altering diagnosis.

But this isn’t a “bash my ex” session, I have another blog for that.

Relationships are difficult by nature.  Just look at the divorce rate.  Add in the stress when one (or both) parties are sick and that divorce rate can skyrocket.  It happened to me.  I was told after we split “I fell out of love with you when you got sick”.  And that is a direct quote.

I am lucky that a friend who has been by my side FOREVER wanted to be more than a friend.  I was lucky that he accepted my illness that I had at the time and still wanted to marry me even AFTER I got yet another diagnosis.  I was diagnosed with the autoimmune in my eyes literally days before our wedding.

It isn’t always hearts and flowers.  Right now we live with my parents because I couldn’t work for 18 months.  My meds are expensive.  When I was on steroids my mood swings were legendary.  My migraines are horrific.  I gained a tremendous amount of weight on the steroids that I’m still trying to work off and for awhile I resembled Shrek.  Our first year of marriage mainly consisted of doctors visits, eye injections, chemo injections every weekend, nausea and weeping thanks to the dreaded steroids.  We didn’t even go out to dinner for our first anniversary because we couldn’t afford it.

So many times I was terrified he would say “I can’t deal with this bullshit.  I’m gone”.  I even told him right before our wedding that he didn’t have to go through with it. That he deserved to be with someone healthy, that he had a free pass and we could still be friends.  He still married me and he has stayed.  He has been everything I ever wanted in a partner.  He is (mostly) calm, very compassionate, very intelligent and inquisitive about what is going on, willing to help out with everything that I can’t do.  He understands my limitations.  He doesn’t expect too much from me.  He actually asks how I’m feeling, he knows what exhausts me.  He encourages me to rest ahead of activities that he knows drain me. I’m very lucky.

Is it perfect?  No.  Do we argue?  Yes.  Do we get sick of each other, of the situation, of everything? Yes.

What helps that he is a scientist.  He has a degree in chemistry.  It is in his nature to understand my conditions and to understand why I am taking what medication and when and what it is supposed to do, what its side effects are.  He even read up on my conditions when we were friends and when he had absolutely no intention of spending eternity with me. That was just because he wanted to understand me better as a friend!  He gently reminds me to take care of myself.  He knows I forget to do that because I’m a nurse, it is in my nature to take care of everyone else first.  I will forget my meds, forget to call in refills, forget doctor’s appointments.  So he makes sure I take care of myself.

He goes to most of my appointments with me.  He is my advocate.  I forget things that he might mention and he sees things that I may miss.  I may be an awesome nurse, but I am an awful patient.  My husband will likely mention something to the doc that I have forgotten and it usually makes a difference.  And it is so wonderful to have him there as a support.

And when we do get fed up (especially now living in such close quarters), we talk about it.  Usually over text.  Communication seriously is the key. I know it sounds cliche but if he knows I’m acting a certain way because I’m late on meds (again) or because I’m having more pain because I’m not sleeping, that helps him more than him thinking I’m mad at him for no reason.

And I know that for me personally, having someone that dedicated and committed to me and my well being is paramount to my health, emotionally and mentally.  And that in turn helps me physically.

Maybe all you need is love after all.

 

 

K: Kickboxing and krav maga

 

Despite my aversion to exercise, see post here, I do love kickboxing.  I have done it twice.  Each time I loved it.  And each time I couldn’t walk for days.  Or I could walk, but very painfully.

My husband loves boxing.  He is the very athletic without trying type.  Grr.  He chooses to channel his emotions physically, through running, boxing, etc.  The story of how he roped me into it can be found here.

What I like is how it makes me feel that my body isn’t useless.  How I feel that I’m not defective.  That my  muscles and bones and joints and tendons can all work together like they are supposed to.  I don’t feel sick in the one hour that I am trying to keep up with the class, although I’m sure I look pretty sick.  In my head I look like one of those MMA chicks.

Also, what is important for me as a rape survivor, is that I feel like I could defend myself.  I feel like, if I were in a situation again where I was powerless, I could do something to protect myself.  That is so important to me.  I do still have a goal of actually attending krav maga classes one day, just right now financially and health wise it is not realistic.  Hopefully one day I can get to a place where I can make that happen physically/financially etc.

The exhaustion from that kind of exercise is different from the usual exhaustion.  It is a PRODUCTIVE exhaustion, if that makes any sense at all.  Normally, just walking around all day exhausts me.  But that kind of exhaustion makes me feel like I’ve earned it.  Like I’ve battled for it.

It’s on the goal list…

E: Exercise

E

 

Yes, exercise is good for me.  But I pretty much hate it.  I am not one of these fitness nuts.  I have never been athletic.  I have always been a klutz.  But I do know that it helps what is wrong with me, and that sitting on the couch isn’t good for anyone.

But through experience, I have learned that going hard is not good for my body.  I have to start low and go slow.  I have to do low impact.  Even when I’m feeling better I have to watch that I don’t overdo it because I will feel worse.  Because then I won’t walk for days.

Yoga is good for fibro and autoimmune.  Walking is good.  Swimming is good.  Boxing is not good.  Neither is running.  Even the elliptical at the gym is way too high impact for me.  I have learned this from experience.  Painful experience.

I do have a goal of learning krav maga one day, but that is far off.  I know that I have to build up my body before I can even entertain that idea.

But it is spring.  It is a time of renewal.  And hopefully after the winter that never ended I will be back to yoga.

Migraine city

Weather-Worst-Migraine-Trigger-300x199

 

Can you guess which is the worst for me right now?

I have had migraines since puberty, probably before.  I have taken almost every med under the sun.  Treximet works, usually within 30 minutes, to quell the war within my brain.  But Treximet is expensive.  My cost, even with insurance, is $64 for 9 pills.  I am currently having 4+ migraines a week, so that doesn’t exactly work out in my favor.

I’ve been supplementing with Excedrine migraine, but I’m EXTREMELY drug sensitive, and that small amount of caffeine (as low as the amount in a cup of coffee!) is enough to keep me up at night.  Which is why I don’t drink coffee.  That and the smell.

I have started back on Topamax, and as the nurse that I am, independently increased my dosage.  No horrible side effects yet.  I just want the pain in my head to end.

The nausea is enough to keep me from eating actual foods, which is slightly beneficial because it keeps me from seeing certain people at meal times.  Yes, that situation has not gotten any better, despite my best efforts to duck and cover.  I truly feel that my relationship with my mother is beyond repair.  Don’t think I can ever forget the evil she has spewed at me over the last few months.  It still hurts, but my shell is growing back.  Tougher and thicker than ever.

The one truly awful side effect of this migraine nonsense is that I haven’t been able to fully enjoy Valentine’s Day.  My husband bought me chocolates, and I can’t eat them.  Major, major trigger.  Boo.

Good news?  I should be hearing back from a prospective employer sometime soon.  I’m hearing from a friend that works there that it is a pretty good bet that I’ll be hired.  The sooner I start, the sooner I can move out.

Maybe that will take care of my number one trigger:  stress.

A chronically ill Christmas

The holidays mean something completely different for those of us with chronic illness.

You know you're from Pittsburgh when Troy Polomalu is enshrined on your tree

You know you’re from Pittsburgh when Troy Polomalu is enshrined on your tree

Someone who isn’t blessed (cursed?) with one of these lovely diseases often finds themselves stressed after the holidays.  All the hustle and bustle, the shopping, the cooking, the traveling the entertaining usually takes a toll on the healthiest of our society.

Imagine what this time of year does to someone with an illness that is negatively affected by stress.

Merry Christmas!!

This is my 8th year celebrating while sick.  The first one was absolutely awful.  I could barely drag myself out of bed.  And when I did make it to my family’s annual holiday party, I was ridiculed, put down, cruelly made fun of because I couldn’t help with the clean up.  That is why I live 1500 miles from said family.

I have learned over the years to pace myself.  To not get so damn ambitious and try to do EVERYTHING that is associated with this time of year.

As most people with chronic illness know, just leaving the house can be an ordeal.  The crowds at the mall or a store can just suck the energy out of you.  For me, it seems the larger the crowd, the more my energy is drained.

I have learned to do as much shopping as I can online.  I have had an Amazon Prime account for years, and that helps tremendously.  Its $80 per year, but it pays for itself.  Being that I have many relatives far away, including my bonus son, just eliminating the chore of going to a store, fighting with the crowds, then going somewhere else and shipping said gift is lifesaving.

My bonbon tree.  The colored ones are oreo and the brown ones are peanut butter.

My bonbon tree. The colored ones are oreo and the brown ones are peanut butter.

I also plan my baking and cooking carefully.  I do a little bit at a time.  For instance, I baked a bunch of sugar cookies for Sunshine’s class party.  I doubled the recipe so we’ll have cookies here for Santa.  I cut out and baked the ones for Sunshine one day, then decorated them the next.  I froze the dough that I’m going to use on Christmas Eve.  I’ll cut out, bake and decorate those in phases too.  It all doesn’t have to be done at one time.

And no matter how much I wanted to make a gingerbread house from scratch this year, I conceded that it probably isn’t going to happen.  So I bought a pre-made gingerbread house that me and Sunshine can put together.

I also made my dessert for Christmas dinner WAY in advance.  Bon bons.  Fairly easy to do, just a lot of mixing.  I really need a good hand mixer.  So those are chilling in my freezer until Christmas.

I’m trying to pace myself.  My parents had a party yesterday, and I did more than my part.  I cleaned, cooked, mixed, entertained.  But I did it all on my terms.  I rested very frequently.  I would do something for 10 minutes straight, and then rest for 20.

My FAVORITE light display

My FAVORITE light display

I divided the wrapping over a series of weeks.  I started shopping in November, and as of right now, everything is wrapped and hidden.  I did a few things one day, a few things the next.

I have gone out with Sunshine on three separate occasions to look at Christmas lights.  I picked the warmest nights and we spent some much needed “Mama-Baby” time just driving around and admiring the displays.  Its the little things that make this time of year so special for me.

I am nervous about traveling to a colder climate this week after all the excitement.  After 20 minutes of sitting in one position, I freeze up and it’s hard to move.  I’m not looking forward to a three hour flight.  But I get to see my bonus child and my husband’s family and friends, so it’s worth it.

So I’m learning.  Its been difficult over the years, but pacing myself seems to work.  And it  is a hard lesson to learn.  But each year it gets easier.  I don’t have to do EVERYTHING that is associated with this time of year.  I don’t have to do the parades, the insanity, the mad rush.  It’s my own.  I do it to the best of my ability.

Merry Christmas, Happy Holidays, Happy Saturnalia or whatever you celebrate this time of year.  Enjoy the season.  Enjoy your loved ones.  Don’t kill yourself trying to make the “perfect” holiday.  Your health is more important, and you will enjoy it more if you aren’t completely sick for the holiday.

Thank you all for the kind words you have shared with me.  I really appreciate it.  Those of us blessed (cursed?) with these types of illnesses need to band together because no one else understands.  Take care of yourself.

postcard

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.