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.

N: Nurse

 

I graduated nursing school in 2003.  Both of my parents are nurses, so it was kind of inevitable.  But it is hard being a nurse and being chronically ill.  You hear of chronically ill people becoming more health aware and more educated.  But what if you already KNOW?

In some ways, my education is a bonus.  I know what is dangerous, I know when I TRULY need to go to see the doctor, go to the ER, etc.  I can make more informed decisions regarding treatment and medications.  I know people “in the biz” that will give me completely unbiased opinions on doctors, hospitals etc.  I have a stethescope, bp cuff, and I know how to use them and what the numbers mean.  My docs tend to trust me more when titrating medications.  They tend to give me more leeway when starting a new medication or weaning off a med.  I know I have more cred when it comes to calling the doc, saying “hey, I need this, please call it in”, I usually get it without having to see the doc.  My PCP especially trusts my own assessment of myself.  And if not, she trusts my mom’s assessment.

But again, I know.  I tend to put myself LAST.  I know how long I can go without a certain med without DIRE effects.  I know what the “danger zone” is for vitals.  I never, ever want to ever go into the hospital, so I will rationalize every little symptom that in someone else, I would advise them to see the doc.

And again, I know.  Therefore, I will Dr. Google myself to oblivion.  I will wonder if the little twitching of my eyelid means a tumor.

One good aspect is that I am much more empathetic toward my patients.  I rarely let on that I have my own health issues unless I am directly asked.  But I tend to understand chronic pain a heck of a lot more than some of my colleagues, probably because I experience it.  I have been on some of the meds my patients are on, and I truly understand when they describe the “tingling” experienced with Topamax or the “zombie sleep” of Trazodone.

I understand the frustration when docs are patronizing, when they talk down, when they blow off patients.  And I’m in the same field as they are!!  I can’t imagine what patients feel!!

So there are some pros and cons from being a nurse and being chronically ill.  But I’m glad I have my experience to back me up.

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…

I: Insurance

I

 

With or without?

I have been on both sides of the coin (and I found out recently that I am abruptly without…but that is another story, fml).

And honestly, it is easier without.  I understand why people aren’t signing up for Obamacare.  Insurance is a pain in the ass.  Sometimes literally.  It can give you diarrhea.  See this post here.

My year without insurance…hmm..I probably didn’t get the BEST care possible.  But I received adequate treatment for my condition.  Steroids have been around forever.  They are cheap.  Methotrexate has been around forever.  It’s cheap.  At one point the doc wanted to try a RA med, but because I was uninsured, I couldn’t have access to it.  But it wasn’t life or death, and it didn’t make a difference in the outcome.

Now, I do owe something like $20,000 in medical bills.  I did have to come off some of my maintenance medication (such as Topamax for migraines) but there are ways to obtain expensive meds.  That paperwork sucks too, but again, it is possible.  I obtained my Lyrica and my migraine meds (Treximet) for free by sending in proof that had virtually no income and a script.

It helps that I’m a nurse.  I know what signs and symptoms are dangerous.  My docs trust me to monitor myself, my blood pressure, to titrate my meds on my own.  So that makes a difference.

Since I have had insurance (since Novemeber).  It has been a pain in the ass to get ANYTHING fucking covered.  Meds, doctors visits, procedures.  I have to prove everything. Prove that I have this.  Prove that I need that.  I have scanned countless receipts, doctors notes, etc into their “easy to use” data base to get shit paid for.  And now I don’t have insurance because the mother of my bonus son doesn’t have his birth certificate and we couldn’t get it from the state in time to make the deadline.

So instead of kicking him off the insurance (he has other coverage, we were just trying to get him BETTER coverage), they kicked us all off.  I went to get my meds the other day and was absolutely shocked at the cash price.  So now I’m paying by the pill until it gets straightened out.

So yes, insurance can be a lovely thing.  But it can also give as many migraines as it prevents.

H: Help (!)

H

 

It is very difficult to ask for help.  Especially in the beginning.  I was 23.  But my body was so weakened by my infection that I basically had no choice.  And over the years, it has become an act of survival.  I have to ask for help on occasion.

The summer of 2012, August in particular, was extremely rough.  My newlywed husband was on the east coast dealing with the aftermath of his mother’s unexpected death and trying to figure out how to care for his disabled father.  I had just returned to Texas after the funeral, expecting to return to work, only to be told that my autoimmune disease had progressed and I would have to increase my steroids to 60mg daily and start methotrexate.

I was sick.  Like really fucking sick.  Like in bed 24/7 sick and puking.  And I had a five year old.  And a husband 1500 miles away.  I needed help.  My babysitter and her family swooped in.   My babysitter even had her little brothers do some of the “man chores” like take out the trash.  My neighbors even brought over food and watched my daughter when my babysitter couldn’t.  My mom did my laundry and cleaned my bathroom.

That kind of help was tremendous.  Sometimes they just did it without asking.  Sometimes when someone says “is there anything I can do?” take them up on it.  Seriously.  When you are sick, you can’t be superman (or wonder woman).  You need help.  So take advantage of it.  And then think of little ways to show your gratitude.

G: Grateful

G

Grateful.  I am grateful for so many things.  Nothing like poor health to help a person focus on what they are grateful for.  So here are some pics of what I feel grateful for:

cheetahgrls

My Sunshine. She makes everyday brighter with her smile.

mandg

My love. My best friend. My partner. He makes everything all better. He loves me even though I’m sick.

mayv

This girl. She has been listening to all of my bitching and moaning through this most recent incarnation of bullshit in my life. She gets interesting texts at all hours and is always willing to listen.

weddingfam

Mi familia. Even my parents. I seriously would not have been able to survive an abusive marriage and chronic illness without them.

punk

Punk. She listens. Cuddles. Keeps me warm. Love her.

tomom

Sunshine. Again.

bookescape

My books. Keep me sane. Keep me from dwelling on my issues.

F: Fibromyalgia

F

 

From the mayoclinic.com:

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

AND IT SUCKS.

Here is a pic of “tender points”:

fibro

These are specific locations on the body of most fibro patients that, when pressed, can elicit excruciating pain.  If a patient has pain in a specific amount of these locations with a specific amount of pressure applied, it is indicative of fibro.  I didn’t know I had these tender points until a rheumatologist came to visit me while I was hospitalized with c.diff and they were trying to figure out my other mysterious symptoms…fatigue, muscle weakness, insomnia.

The doc walked up to my bedside followed by a few “fleas” (doctors in training), he asked a few questions and then pressed the inside of my elbow.  I jumped out of my skin.  The pain was excruciating.  Electric.  Stabbing.  Burning. And it lingered long after he stopped pressing on the spot.  And that was the last piece of how I was diagnosed with fibro.

Pain and fatigue are the big fibro symptoms.  And they are usually without merit…meaning that just everyday activities is enough to cause pain.  But fibro causes some weird things too.

Sometimes when I itch my skin, it causes severe, lingering pain.  Insomnia is a big deal as well.  You would think that someone with major fatigue problems would be able to sleep…but NOPE!! I also occasionally get IBS like symptoms and nausea.  I am also VERY chemically sensitive.  Especially to smells.  Febreeze is my enemy.

The good things about fibro? After half a decade with this illness, you can see some silver linings.  I have learned to slow down.  I appreciate the little things in life.  The basics.  If I have a roof over my head, food in my belly, a safe environment, and people that love me, I’m pretty good.  I don’t need a new purse, an expensive vacation, new clothes, the newest phone/gadget/etc.

I may complain a lot on this blog, but I do try to see the positive.