In in for the long haul…

Today is the last day that I have health insurance.  So I am stocking up on the medications I currently have refills on and I followed up with the doc for the second opinion.

My bloodwork held no surprises.  ANA is still negative, so is all bloodwork looking for lupus.  Only a little bit of abnormalities in my complete blood count (lymphocytes) and with my c-reactive protein and a normal high of my sed rate.

This doc talked to my eye doc and I think to my current rheumatologist.  And I trust this doc, he is probably the best in this field in the area.

The verdict?  I definitely have an autoimmune disease that is attacking my eyes and is acting systemically throughout my body.  The methotrexate is working, (the doc said it saved my sight) as evidenced by my eye doctors peek in my eye and by the lab values.  I still have active disease in my left eye, so the second opinion doc is recommending anti-TNF therapy (I’ll get to that in a minute).  Despite the extensive lab work, no one can say whether it is definitely sarcoid or something else.  There is just no evidence either to rule it out or to solidify the diagnosis.  No one knows why I have increasing joint pain throughout my body.  It could be the disease itself, or the steroids that I have been on for six months weakening my bones.  The second opinion doc also said that I may have this going on for a very long time.  I may be on treatment for many years.  I may never come off of treatment.

His suggestion was to add anti-TNF therapy: Humira.  It is usually a rheumatoid arthritis drug.  It is extremely expensive.  I no longer have insurance after midnight tonight.  Funny, huh? Like $1,900/month expensive.  He also said that the programs that exist for people without insurance will most likely not pay for an “off label” use such as my condition, uveitis/presumed occular sarcoidosis.  Now is the time when I start cussing.  Fan-fucking-tastic.  I can’t afford food, let alone this type of medication.  He is suggesting the Humira to completely stop the inflammation in my eyes and completely stabilize me.

As for returning to a job?  No suggestions there.  He agreed and acknowledged my concerns regarding not just functioning as a hospice nurse, but a nurse in general.  I can’t make judgement calls about my own health, let alone someone else’s.  I can’t guarantee an employer (my current one or a prospective one) that I can be healthy for a set amount of time during any given week.

Let’s take yesterday, for example.  Thursdays are usually good days for me.  The side effects of the methotrexate are usually flushing out of my body.  I can usually tolerate housework, maybe a short run to the grocery store.  Yesterday around 2:30 pm I was hit with a wave of severe pain to all the joints from my left shoulder to my left fingers as well as my left hip.  I’m talking teeth gritting pain.  Being that my husband works second shift, I could not take any medications that would make me drowsy because of my responsibility to take care of Sunshine.  However, she was going to a birthday party for a neighbor (in the middle of the week? yes, I know, thank God for small favors) and she wasn’t due to return til early evening.  So I took a dose of tramadol, I did take a 2 hour nap, and the pain was knocked down from a 9/10 to a 3/10.  I was awake by the time Sunshine came home, and we had “Mama/baby time” where we snuggle in “Mama’s bed” and watch movies.

I was not anticipating that kind of pain.  I do not know where it came from.  I did nothing that could have triggered it.  No excessive typing, I didn’t sleep on it the wrong way, but I usually sleep on my left side.  I didn’t bang it off the wall, which I am prone to do.  Nada.  Just intense pain from my fingers through my shoulders and in my  hip.  Throbbing pain.  For hours.

I can’t promise my time to anyone.  I had to cancel dinner this week with my mom.  I can’t do that with an employer.

I wish I could read books and blog for a living.  Or a health coach.  I could do that.  Set my own schedule. Help people that need direction with health and wellness. Because I have been through this maze, on both sides, it can be scary. 

Positive:  I don’t have anything worse than what I already knew.  And that is stabilizing with the treatment I am currently receiving.

I am going to a baby shower tomorrow.  Nothing like celebrating new life.  I’ll post pics of the decorations I made.  Yes, that could have triggered the pain, but I am right handed, and my right side is fine.  I think the left side of my body just hates me 🙂

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The other side

Dying at 30.  That shakes me to the core.

Another one of my high school classmates is slipping away as I type this.

For Qui

She has battled leukemia for over three years.  But its not the leukemia taking her life, its an infection (e. coli) that gained entrance via a bedsore, and due to her compromised immune status and all the underlying issues, it spread rapidly and caused septic shock.  Now the infection is in her brain and will soon spread to her lungs and heart.  All aggressive treatment has been stopped and they are “making her comfortable”.

I know what all of that means.  I know what is going on right now.  I’m a hospice nurse.

Although I am 1500 miles away, I can feel the pain of the community.  My best friend from childhood, lets call her Pooh, went to see Qui in the hospital yesterday.  Again, I flipped into nurse mode as I prepped her before she went in, what she might see, what she might not see, why Qui may not be getting tube feedings or fluid, why she may be talking funny.

A year ago, I was doing the same thing, only it was my family doing the hospice dance.

My paternal grandfather had a series of unfortunate health events last year.  It was one catastrophe after another.  At 80 years old, he insisted on living alone and living 5 hours away from his kids.  Yes, he had some family nearby, but not the sort that would religiously check on him.

A fall caused a brain bleed and required brain surgery early in the spring.  He came up here for rehab and stayed until late summer.  Then he insisted on returning to his home, and living alone.

He had a massive stroke in October.  Brought on by a completely unnecessary medical procedure.  Luckily, my aunt was staying with him at the time, or who knows when someone would have found him.

They attempted to rehab him from the stroke, but it was futile.

I was the one visiting the day the doc came and suggested hospice.  I called my dad, he called his siblings.  I was there for that meeting.

It is no fun being on the flip side of the hospice coin.  Suddenly, the doctor is giving you the speech that you have given to so many others.  Words like “comfort” and “end of life”.  Suddenly, its real.  You will lose a family member.

I have always thought that hospice was a gift.  You get a chance to say your goodbyes.  You can have “closure” and say all the things you wanted to say before someone passes.  Whereas in sudden death, all of that is left unsaid.  Its not always like that.  In my grandfather’s case, he wasn’t exactly coherent most of the time.  He couldn’t reply to questions, he couldn’t carry on a conversation, and he was extremely confused.

He made it difficult.  He lingered for six weeks.  And in those six weeks I think I aged about five years.  As the family hospice nurse, I was expected to know everything: “can we feed him?”, “can we give him this medication instead?”, “why is he making that face?”, and the worst one “why hasn’t he passed yet?”

He couldn’t eat because the stroke affected his swallowing ability.  Everything he ate dumped directly into his lungs.  But he was confused and thought we were torturing him.  He told family from out of town that we were starving him.  Then we figured out that he didn’t want to “eat”, but just wanted a “taste”.

He pushed my dad and uncle away and doted on my aunt.  That was much like his entire life with his children, but seeing it at end of life was difficult.  I have seen it plenty of times in my patients, but in your own family, broke my heart.

Family I had never met before came in from all over Texas.  I heard stories about my grandfather and grandma, saw pictures.  One second cousin told me that my grandpa was her inspiration to go to college and make a better life for herself.  So many mixed emotions for me.

Working all day with my own patients, trying to juggle texts and phone calls from my family during the day regarding my grandfather, and visiting him at night just took its toll.  I stopped visiting my grandfather so much.

I had said what I needed to say to him prior to a trip I took with Sunshine for her birthday to Disney.  I was at peace.  I figured if he passed while I was away, I would be ok with it.  He didn’t, but after I had made my peace, I visited less frequently.

I saw him the day before he passed away.  By this point, he was sleeping 20 hours per day, essentially a light coma.  He would talk about my grandma being present (she passed in 2004) and smelling her perfume.  At times he thought that I was her and talked about her beauty.  Again, I have seen this many times in patients, but experiencing it from your family is amazing.

When it was time, he declined rapidly.  We received a call from the nursing home that he had an “event”, and he was found with labored breathing during morning rounds.  They felt like this was it.  Using my experience, I did a quick assessment and confirmed their suspicions.  We called his hospice nurse (of course I wasn’t assigned to him).  And everyone who could, made it to his room.  We shared stories about his life.

My head was on his chest when he passed away.

I gave the eulogy at the funeral.

I know what Qui’s family is going through.  I know it too well.  Just sitting there by her bedside, watching each breath, counting respirations.  Looking for any sign that she is slipping away.  The odd sense of anxiety, wishing that it would be over, but not wanting her to go.  I call it the “death watch”.

Qui kept a CaringBridge website to update her MANY friends and family during her battle.  Her last personal entry brought me to tears when she wrote that she knows that she is dying.  I have always wondered how a person can deal with that kind of news.  I worked with terminally ill patients for years, yet I have never asked that kind of question directly.  How can someone process that they will no longer be living?

Facebook is humming, Qui took full advantage of technology to talk about leukemia and bone marrow donation.  She will leave a legacy behind.  So many people learned about cancer, leukemia, bone marrow transplantation because of her.  She will live on.

A new member of the 47%?

I have always prided myself on graduating with a profitable degree at age 21.  I am a registered nurse.  While my peers were still in college, most attempting to get now worthless degrees in areas like “communications”, I graduated with a job and have worked steadily ever since, with the exceptions for the time I was ill and had my daughter.

I have worked since I was 16 actually.  I worked each summer as a lifeguard.  I worked 16 hours a week throughout nursing school.

I have nursing experience in pediatrics, critical care, hospice, telenursing, and pain management.  I have worked in doctor’s offices, pediatric mental facilities,public health, huge hospital systems, and non-profit entities.  I have never had the luxury of “choosing” not to work.

I have always been the breadwinner in each of my marriages.  In my first marriage, my ex husband resented that fact.  At one point, he was able to pick up benefits and I was able to switch to more lucrative agency nursing.  In this marriage, my husband’s job does not offer benefits.  The economy is not what it was in 2005.

I state all this because I am not a “welfare queen”.  In fact, my politics were more toward the red side until I started working with illegal immigrants and the profoundly destitute during my last employment as a hospice nurse.

Why do I say “last employment”?  Well, my health condition is such that I can no longer serve in that capacity.  My main doc has determined that I can work 20 hours per week in a limited capacity.  I’m not sure I could even do that.  She has also determined that I have mental limitations, i.e. difficulty concentrating, “mental fog”.  I cannot sit or stand > 30 min.  That’s true.  I seem to express myself better in writing.  Granted, I usually write these posts over a few hours.

So currently I’m on a “medical leave”, which means I can keep my current insurance (while paying for it out of pocket), until the end of the year.  I’m still waiting on the official paperwork.

The voluntary short-term disability policy through work that I was paying in to has decided that they think my sarcoid condition might be “pre-existing” so I spent hours today rounding up information on all the doctors I’ve seen in 2011 (none were rheumatologists, none were retina specialists).

I just don’t like that feeling that someone feels that I’m being deceptive.  Look at the name of this blog.  “True life is stranger than fiction”…I would have never thought in a million years that I would have developed something like this.  That I would be on frickin CHEMO.  To think that I would make it up to try and get out of work and to get my policy to pay for it is insanity.

I haven’t had any kind of income under my name since August.  To say it has been a blow to our family would be understating it just a bit.  We are looking at not making rent.  My parents have  been more than helpful financially.  But they cannot support my household and their own.

That’s where the 47% thing comes in.  I am seriously considering applying for social security disability at this point.  Also applying for any other benefits that I can apply for.  We literally have negative money in the bank at this point.  We have wiped out all meager savings that we did have.  My parents can no longer help out.  My husband has been applying for other jobs, but he is not getting any feedback.  Hell, I’m just happy he HAS a job.

*I am using a borrowed laptop (from my parents who have an ungodly amount of technological devices at their house) and the internet is <$40 and was paid last month.

Point is, I am not what the right is rallying against.  My mother, a staunch republican and tea-partier, is actually encouraging me to “apply for everything you can get”.  I’m sure if her fellow tea partiers knew what she was saying, she would be kicked out.  Ha!

I have been working hard since I could start working.  I have seen children come into this world and others leave it.  I have been puked on, bled on, peed on, pooped on, spit on.  I have compassion.  I have been with families as they have made the decision to terminate life support.  I have literally pulled the plug on those patients.  I have witnessed the most beautiful final moments of life.  I have helped ease pain of the sick and dying, regardless of income, ethnicity, age, religion.  I have educated teenagers, adults, families, the elderly about everything from sexually transmitted diseases to the dying process.

And now I’m sick.  There was nothing I did to get sick, and if you look at it, I originally got sick on the job, seven years ago.  I have followed the treatment recommendations of all of my physicians.  I am not “looking for a handout”.  I have paid into a system since I became eligible to work, and now I need help.

I despise the fact that I have a million and one hoops to jump through to access benefits that I have been paying into for just this exact situation.  That my husband has to sell his car so we can pay rent.  That I have to cancel doctor’s appointments because I can’t afford the $30 copay.  That I have to decide which of my medications are “more necessary” than others.

The medical bills keep piling up.  My insurance only paid “x” amount of this bill, I apparently owe the rest.  To get a needed operation for my daughter, it cost $1,500 up front.  You think I paid for it?  Child got her tonsils out for Christmas, thank you Mom and Dad.  And she really needed them out.  They were badly infected.  And don’t worry, she will have a good Christmas.  But I do see some black humor in her finding her tonsils in a jar under the tree.

I’m honestly just trying to keep my sight.  And to stay out of pain.  I would love to return to work.  I am bored.  But I can’t convey my ideas concretely enough through speech.  I stutter, I have brain fog, word finding issues.  Its severe.  And then the physical issues.  Pain.  Fatigue.  And then my eyes.  So frustrating.

I would like to keep my sight and not get evicted.  Is that too much to ask as a woman who has played by the rules all her life?

It has taken me two hours to write this post.

An unplanned trip down memory lane

I just got word tonight (via facebook, of course) that a friend of mine from high school passed away.  I haven’t actually shared spoken words with her since high school, or actually seen her since graduation, as she moved out of the area way before I did, but we caught up a few times via the internet.  She had chronic health problems since she was a child (juvenile diabetes) and was extremely brittle (that is a term that means uncontrolled with her blood sugars).  Even throughout high school she was in and out of the hospitals with blood sugar issues and complications.  I know in the past few years she had been found passed out in public and spent time in the ICU.  And I know as a nurse that diabetes, especially her type, is not kind to the body.  I’m not sure what happened this time, but I’m glad she is no longer suffering.

She used to pass out those glucose tabs (that they give to diabetics) out like candy during class.  She was the first diabetic I ever met, and through her I found out I wasn’t squeamish around needles (that helps when your future occupation requires poking people with needles).  I can still see her handwriting in my mind.  She had this really loopy handwriting,  mainly all curves.  She was smart as hell and wanted to be a biomedical engineer, but I’m guessing her health got in the way.  She went through a lot more in her life than just the diabetes, and I hope she has found peace.

She isn’t the first classmate of mine to pass away, but the first one whom I would actually go to the funeral, if I was living in pgh.  And the first that isn’t drug related or a suicide.  Or a shooting.  Or a drug related shooting.  Or an accidental drug related quasi suicide.  I graduated in 2000.

This makes me think about high school, as I’m sure everyone does from time to time.  Those four years for me, weren’t so great and lasted so long in my mind.  Now four years go by in a nanosecond.

Thanks to the wonder of the internet (and Mr. Zuckerberg) I am in nearly daily or at least weekly contact with a good portion of the majority of those that shared my high school.  I have found out that at least 2 boys silently pined away for me and found the courage to tell me 10+ years after the fact (I honestly thought one hated me because he actually used racial slurs to tease me.  Turns out he didn’t know it was a racial slur when he said it in the 6th grade).  And many people act like we were best friends in high school, even though, if this were 13 years ago, they wouldn’t even look at me let alone acknowledge my existence.

I dealt with a lot of negative attention in middle and high school due to my ethnicity and the lack of others like me in that area.  I would have people come up to me and ask me “well, what are you?” and I would reply “human, what are you?” And that continued into nursing school and into my career.  Grown adults would ask me if I was Hawaiian or Samoan, or biracial (technically, yes, but not what they were thinking).  They never thought to ask if I was Latina.

Maybe that’s why I haven’t been back in three years.  I did not make my 10 year reunion, no cash, and I’m not sure I wanted to go.  I would have seen the girl that passed away last night at the reunion.  Maybe I’ll feel better about it at the 20th.  I don’t think it is me not letting go of the past, its more about me not justifying the airfare to see people who treated me poorly.

Everyone gets made fun of as a kid.  Make fun of me because I said or did something embarassing in class.  Make fun of me because I’m a klutz.  Make fun of me because I’m a bookworm or because I can’t kick the kickball in gym class.  Don’t make fun of my ethnicity.  I can never, ever change it, its who I will always be, and it is something I will pass on to my children.

That’s a road down memory lane I was not planning on taking.  Cleansing breaths.

I hope one day I can think about that time in my life and not have painful memories.  Maybe one day.

I know my friend didn’t have such an easy time of it either.  Rest easy MB.

We Are Family

I didn’t always have it this good.

Both of my parents are highly educated nurses with over half a century of experience in the field between them.  They work in nursing education at the present moment.  You would expect empathy and understanding from parents that do it for a living, but growing up with nurses for parents usually yields the exact opposite.

As a child, unless I was turning blue or was bleeding profusely, it didn’t elicit any kind of alarm.  I had to have a fever greater than 101 or be projectile vomiting to stay home from school.  But on the other hand, I always had cool band-aids (they usually indulged me and used something from the hospital like butterfly sutures or tegaderm) and I practically grew up walking the halls at a major university medical center.  By the time I was a teenager, I had met extremely well known and well accomplished transplant surgeons, observed some procedures, visited research facilities, and knew I was destined to follow in my parent’s footsteps.

Back to my issues.  I have always had something medical going on with me.  I developed severe migraines at puberty (I think I had some as a child, I remember having really bad headaches).  I had a severe case of mono at 14.  And that is what seemed to me to kick off the immune issues.  While working in the ICU I contracted a hospital acquired infection.  I was so sick.  But it didn’t seem to faze my parents.  Not that they weren’t empathetic, its more like their attitude was nonchalant.

And then I was diagnosed with fibromyalgia while I was battling the infection.  I’m pretty sure my parents didn’t believe it was a real condition until recently.  I heard tirades about laziness, needing to “put my big girl panties on and deal with it”, “pulling [myself] up by the boot straps”.  I was so exhausted from the infection, my muscles ached, I was losing weight, my husband at the time was less than supportive. And my parents. who were nurses, thought I was faking.

I’m not sure if it is because there is literally no proof of illness, and the diagnosis is made by exclusion, but their attitude was less than comforting.

Fast forward to this illness.

I’m not sure if it is because it is something that is provable with pictures and blood results, but my parents are much more empathetic this time around.

Because I need to go to the eye doctor so much and require a driver, both of my parents (and my husband) have been to the doctor’s appointments with me.  They hear the prognosis, see the imaging and can ask their questions about my treatment.  I even make sure they come to the appointments that I could drive myself to, mainly so I don’t forget anything.

My parents call and check on me every day, they have been helpful financially and in caring for my daughter.  Occasionally I’ll hear a comment about “pushing through the fatigue/pain”.  They joke about my husband leaving me (which I hate).  But overall I feel like I have the support of my parents, which I feel I did not get during my first battle with severe illness.

I feel like I have the support of my aunts, uncles and cousins, which I most definitely did not have in pgh.  That is a story for another day.

And my husband.  We have some issues, but I let him read this blog yesterday, and he seems to understand more.  I write about this better than I can express it verbally.  He thanked me for letting him in to what it is like.

Unless someone goes through something like a chronic illness, in which they are experiencing symptoms every single day for a prolonged period of time, they honestly can’t understand it.  It is truly mindboggling.  The planning, the explaining, the fear (of the unexpected), the doctor’s appointments, the medications, and around and around it goes.

I am truly grateful to have the support and love of my family this time around.  It may have taken awhile, but I would rather have it now then not at all.

Nurses make horrible patients

I should know.  I’ve been a nurse for nine years. I come from a “nursing family”.  Both parents.  An aunt and a cousin.  I’m surrounded.

Nurses think they know better than the doctors.  In some cases that is true.  But nurses often don’t follow their doctors orders when it comes to resting, taking their medication as ordered, and getting consults and other treatments like PT and OT.  We love to self diagnose and we don’t know how to stop being a nurse and start being a patient.

  • Medication.  Nurses are notorious for not taking their medication or taking it differently as ordered.  For me personally, I constantly forget to refill my meds, or I “wing it” and take half or skip a dose or tinker with my dosages.  Why?  Because I have the knowledge of what will and will not kill me.
  • Rest.  What is that?  Nurses are used to “pushing through” pain, illness, fatigue.  Despite the risk, nurses will push through colds, viruses etc because they don’t want to leave their friends short shifted.  You have to be literally bed ridden to miss work.  Earlier this year I worked through severe eye issues because I knew that covering my rural territory (about 50 mile radius) would suck for anyone filling in for me.  I went to work the next day after having steroid injections TO MY EYEBALL.  A needle was inserted into my eye and it hurt like hell but I went to work the next day.
  • Ignoring treatment recommendations.  PT or OT?  Hell, I’ll exercise my knee at home.  I’ve seen so-and-so from PT do Mrs. Johnson’s PT a dozen times by now, I could do it in my sleep.  Hey, that’s not a bad idea.  Consult?  I’ll just ask Dr. Smith the pulmonologist what he thinks of my situation the next time I see him in the cafeteria.  Sound familiar? I rest my case.
  • Self diagnosis.  We know how to assess, that can work for or against us.  I personally admit to using my own stethoscope to assess my lungs.  They are clear, by the way.  My heart rate is tachy and irregular, however.  And has been for weeks.  No bueno.  So as a nurse I automatically run down the list of things it can possibly be.  As a nurse I automatically think the worst thing possible…the sarcoid is in my heart…I’ll need a defibrillator.  Or worse, I’ll need a heart transplant.  When in reality it might just be medication related.
  • When self diagnosis works — last year my daughter lovingly gave me a concussion.  She bonked her hard head into my chin and I saw stars.  I didn’t black out and hit the deck, but I did sleep for 18 hours straight.  When I woke up the next day, I knew enough to get to the ER and the concussion was confirmed.
  • Take off the nursing cap!!  This happens at doctor’s appointments. They all know I’m a nurse.  Which can make doctors lazy.  They figure “I don’t have to go over this piece of education with her because she’s a nurse, she should know this”.  Well, I’m not a nurse that works in rheumatology or neurology, or psychology.  Please give me the same education you would give to any other patient.  I will not consider it condescending, I have a lot floating in my brain with this condition and reinforcing the education will go a LONG way in making sure I’m doing the right thing.
  • Nurse + Internet = paranoia. Nurses also know how to find more specific information.  I know how to search the web for studies and professional articles for my condition.  BAD IDEA.  It only depresses me.  I know how to read medical jargon, research articles, anecdotal evidence. It scares the hell out of me.

So I vow to be a better patient.  I will call my meds in on time, I will keep my head on straight, follow doctor’s orders and stay off pubmed.  I will walk the fine line of being a patient and being a nurse.  Not too paranoid, not to lax.

Help?

Return to work?

Doc cleared me to return to work.

But at a much reduced level.  20 hours per week.  Limited driving.  Limited lifting.  Limited standing.

I informed HR of the preliminary findings of the doc, mainly because HR was breathing down my neck about it.  I understand they have a nonprofit organization to run, and that my territory isn’t easy to cover, but don’t get on me about making demands of my physician.  Don’t say “find a way to get your doctor to finish your paperwork and fax it to us as soon as possible”.

I did ask my doc, she looked at me and said “I do have other patients to see today”.  I felt so stupid.  Of course she has other patients.  She isn’t my personal one-on-one physician.  Then I felt like HR was interfering with my relationship with my doc. And I have a really nice, really understanding but encouraging doc.  She takes the time to listen, to assess, to really do a thorough job.  And because of the pressure exerted on me to “find a way to get the paperwork” I run the risk of damaging that relationship.

So yesterday afternoon at the prompting of HR I called the doc’s office and asked about the status of my paperwork.  The receptionist was nice enough to go back and ask for me.  He said that the doctor had dictated the information on the restrictions, but it has not been transcribed on to the report yet.  Being that it was 4:50 pm. he did not think it would get completed that day.  He did say that it should be completed the next day.

I emailed HR with the new information and did not receive a reply.

So here I sit at 8:15 am.  Waiting.  I was told a few weeks ago that my employer would not create a new position for me.  And I’m not sure where I stand legally.  I am out of FMLA.  If I need more time off I’m basically fucked.  I have an appointment with the cardiologist next week.  Who ever I talk to today, I have to make that clear, that my health comes first.  That was not my  motto earlier this year and I paid for it dearly.

I ignored signs and symptoms that my health was failing since about a year ago.  I thought that it was just my fibromyalgia flaring and I treated it as such.  My grandfather’s health started failing dramatically around a year ago and I thought it was stress from that situation combined with more stress at work taking a toll on MY health.  My grandfather passed away right after Christmas.

I continued to ignore the signs and symptoms throughout the spring.  I was extremely fatigued, I was running low grade fevers.  My joints started to ache.  I brushed it off because I was working massive amounts of overtime to pay for my dream wedding.

Getting closer to the summer, I would just collapse on the weekends.  I would sleep all day.  My migranes increased in frequency.  I was just barely surviving day to day.  My work suffered, my relationships suffered.  Until my eyes exploded (see the post about that here).

And now here I am.

I love my job, when I’m healthy and can physically do it.  I’m a hospice nurse.  Hospice means that people have been diagnosed with a condition that if left to run its course, will likely cause their death in six months or less.

I have been a nurse for 9 years.  I love teaching people about their bodies, I love teaching families how to care for their loved ones.  I know I can use my talents somewhere.  And that is what I think it is, a talent, a calling.  I have no qualms about people, their bodies, bodily functions.  I can talk to anyone at anytime about anything.

I think my dream job in nursing right now would be to stay at home and to health education and advocacy/coaching via the phone.  With a set caseload that doesn’t rotate so I could build a relationship with patients.

I had a telenurse job before, but the calls were random and I couldn’t build a relationship with the patients.  I know I can make an impact, I just might not be able to physically do what I used to do.

This is funny, I described my former workload to my doc and she said “well, I don’t think anyone healthy can do that”  Thanks Doc!!

I think I got off on a tanget there.

Its 8:40 am.  No call yet.

Anxiety building…

 

**Update 10/13/12**

I’m still in limbo.  My doctor’s office was kind enough to send a letter to HR stating my restrictions and that FMLA paperwork was pending.

Not good enough for HR.  On 10/11/12 at 3p I received an email again telling me to call my doctors office and find out exactly when the FMLA paperwork will be completed.

On 10/12/12 I sent an email to HR lady and I received an “out of office” reply.  I called the main office and spoke with someone else in the office and explained the situation.  She stated that anything relating to my situation would be handled on Monday anyway.  I did have to drive to the main office to drop off a check for my health insurance.  A near $500 dollar check that my parents were kind enough to furnish.

So I went in to work for the first time in nearly 3 months.  I was nervous because of my appearance.  My left eye is droopy for some unknown reason, my face is puffy due to the steroids, and again I look pregnant.  I did see some of my coworkers and one good friend in particular who offered some much needed support.  She seems to think that the powers that be will not accept my limitations and will just terminate me, which is within their rights.

I would just like to know either way.  Either I have a job or I do not.  Either I have to apply for government assistance or I do not.  The waiting sucks.  All of this just sucks.

You may now commence with the fat jokes

WAHHHH!!

I have apparently gained 20 lbs in the past four months.

And 90% of it is in my midsection.

I was not one in the position to be gaining 1 lb, let alone 20.

I look pregnant.

I have friends who ARE pregnant and don’t look it.

I do.

Did I mention that I HATE steroids?

I was started on 60 mg/day in June. I stayed at that level for almost a month. I was down to 20mg/day and then my eyes started acting up again so I was bumped back up to 40mg/day for another month. I was at 20mg/day again and now I’m at 10mg/day.

If anyone has been on steroids they can tell you what it usually does: ravenous appetite, usually for bad things like bread, or in my case cookies. At 60 mg/day I was so hungry all the time. I felt like an adolescent male. Usually not one serving, try two. Or three.

And the irritability. I’ll make that a separate post. And insomnia. Yuck. But let’s get back to the issue at hand. My fatness.

Even when I had no appetite, I still ate to stave off the nausea caused by the methotrexate. Usually small snacks every few hours as needed, but they were usually peanut butter crackers or PB&J. And I drink ginger ale on methotrexate nights because I believe it helps with the nausea as well.

I do recall an entire week where I ate frozen waffles every day. Sometimes twice a day.

Oh and the ice cream! I won’t even go there.

And the cookies. My daughter is fascinated with baking. She has a baking app on the iPad she “shares” with my dad. She wants an easy bake oven. I have made cookies with her each week for the past three weeks. And I have probably inhaled most of them myself.

Why can’t they make steroids that make you crave things that are good for you? Like vegetables?

As a nurse I know the reason. My body is chronically in a state of alertness by the artificial corticosteroids coursing through my body. They artificially raise my blood sugar as well, and probably my heart rate (I’ve been running in the 120s). And probably send a signal to my brain to eat food that can be easily broken down to sugars that can be rapidly accessed in case my muscles need them for the old “fight or flight” response. It sucks when you trick the body.

And since I am no where near actually doing any fighting or flighting (thank you overwhelming fatigue), my body is converting all of this excess sugar that is hanging around to fat. That is sitting right out in front. Like I swallowed a basketball.

I’m not going to do anything silly at this point, like falsely promise that tomorrow I’ll start a new exercise regime (because I can’t). I will say that I have been more active in the past few weeks. I am no longer relegated to my bed-to-couch existence. I will chalk that up to my body getting used to the poison. Or as used to is as it can get.

I will  say that I will be more aware of what I put in my body. But it is damn hard when you feel awful and are craving something. Sometimes its a taste thing, for me I crave sweet. I find that I usually have to chase something salty with something sweet or I feel uncomfortable. The back of my mouth feels yucky and nasty. I don’t know how to explain it any other way. I have already been through one battle with thrush. I know the methotrexate (and most types of chemo) kill rapidly dividing cells. Your mouth has rapidly dividing epithelial cells. Fantastic.

I have been limiting calorie containing drinks other than on methotrexate night when I do the ginger ale thing. But most of the time its water. Lots and lots of water. If I start to get increased urination, I will ask for another diabetes screening.

That gives me another idea for a post….

Chronic Illness in America

So I’m not sure what its like in other countries.  Or what it has been like here in the past.  But this is a theme I might visit on as this continues with me.

Yes, I am fortunate to have family that helps me.  Way more than they should.  But the fact is that if I didn’t have them I would be screwed.  Seriously screwed.  My parents covered our rent for the past two months.  They have been covering groceries now and then.  They paid for my daughter’s school needs (clothes, supplies etc).  My dad paid two months of my car payments.  And they have paid for one month of my medication.

Prior to this illness, I was the “breadwinner”.  I am a nurse with close to ten years experience.  When healthy, I make decent money.  Enough money to support us in a three bedroom apartment in a nice suburb in Texas, to have one car payment, to put food on the table, to have internet access and satellite.

We got married in June.  We paid for the entire wedding ourselves.  It was not a lavish affair, and when it was planned, I wasn’t sick.

I required two weeks off leading up to the wedding for more tests to determine exactly what I had going on with me.  I returned to work for three weeks and my condition worsened.  I would like to say my workplace was supportive of me pursuing the best care by giving me time off and being sympathetic.  But that wasn’t the case.  My mother in law passed away mid-July and the day before I was to start my bereavement leave, my former supervisor sat me down and told me that I was too sick too much of the time and that she fully intended to make me account for my frequent absences when I returned.  I pointed out the dates she was concerned about and how the correlated to a specific medical event and how it now related with my current diagnosis.  She said she didn’t care.  And this is supposedly an educated nurse in the field of compassion.

While I was assisting my husband and his family up north, my condition further deteriorated.  I don’t know if it was the environment up there, the cigarette smoke (my father in law is a smoker) or the stress, but I returned early so that I could see my docs in hope of starting treatment (the dreaded methotrexate).

When I came back and they saw me, it was determined that I could not return to work until the methotrexate was started and the inflammation was halted.  So essentially I have not worked since mid-July.  I have not had a paycheck since the end of July.

I have paid into a short term disability account which I have not received one payment from to date.  My physician has kindly filled out all the forms required of them, including my FMLA forms (and the FMLA forms in a hurry because I have been threatened with termination if I don’t produce such and such forms by “x” date.  Termination means I no longer have insurance benefits for myself, my daughter and my husband.)  Today I called the short term disability company and was told that my case is “on hold” because my employer has not sent them the proper paperwork.  So I send an email to HR at my employer, sweetly asking them to send said paperwork, today if possible (I figure if they can do it so can I) and have yet to receive a reply.

This is my life.  We barely made rent this month.  I was able to cash in my FSA funds from my many many many co pays (that was another adventure all its own) and that was where I got the rent money.  My parents, again, have assisted us with some groceries.  They started shopping in bulk and are sharing whatever they get with us.

I may lose my job for good next week as my FMLA runs out.  I see the rheumatologist for a regular monthly check up next week.  If I am unable to return 100% to my previous duties, they can terminate my employment.  I have been told that they will not “create” a new position for me, one that could use my talents that I still retain.  I have to come back 100%.

I’m not sure if I ever will be 100% as long as I continue to take methotrexate.  I don’t think that anyone can be.  It is a poison.  It degrades cells, that is its job.  My cells are out of whack and are attacking its own tissue to such an extent that my body is requiring poison to whip it back into shape.

At this current time, my limits are 20 minutes.  I can do sustained activity for 20 minutes.  That usually breaks down to cleaning (dishes, laundry, a shower etc), driving, typing.  Walking, make that 5 min.  After said activity, I need to rest.  Sometimes I completely “conk out” and sleep for one or two hours.  My limit for doing activity in a day is usually 3-4 of these little segments of activity before I can’t do anymore.  And depending on the activity, I may feel worse the next day.

This in no way reflects my current job description.  Prior to becoming ill, I was responsible for 12-14 terminally ill patients in a rural part of Texas.  My radius spanned in some places to 50 miles between patients.  I was driving 100+ miles per day.  Because I was driving so much, I wasn’t able to get my charting in at the bedside, so as a consequence, I was finishing my charting at home.  I could be responsible for helping a patient reposition in bed, drawing blood, starting an IV.  I could also be exposed to a number of diseases, viruses and unsanitary or dangerous living conditions.

I am currently looking for any type of work I can do from home.  I used to do telephonic nursing from a call center when my daughter was an infant.  I did health coaching type work, calling patients who were just out of the hospital or patients that fit a specific criteria and discussed ways to remain healthy.  I can still use my brain, my knowledge and my experience to help people.

I still require many doctor appointments.  And I still have vertigo, nausea, pain and days where I just sleep.  And I look like hell.

I am improving.  I have done more this week than I have been able to since starting methotrexate.  But it is a slow improvement.  Too slow for my employer.  Too slow for these bills to get paid.

But it is improvement.  And that is positive.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

positive thinking = positive results

Good news from the docs this week.  The uveitis in my right eye is completely gone and is minimal in my left.  There are no signs of sarcoid in my brain.  No signs of sarcoid in my lungs.  They are still treating everything as though it is sarcoid, however.  I can decrease steroids by half again, but it was reiterated that it is the methotrexate that is keeping the inflammation and bleeding at bay and I may have to be on some sort of steroid/antimetabolite medication for years.

As much as this is good news, it also makes things complicated in that I don’t have the clear cut “this is what is wrong with you”.  I’m actually carrying the diagnosis “idiopathic uveitis, presumed occular sarcoidosis”.  Makes it complicated when trying to justify why I can’t work and when looking into other means of sustaining myself and my family.

I usually see life in shades of gray.  But this is one thing I wish was clear cut.  Either I have “xyz” disease or I don’t.  Either you have a cause for it or you don’t.  This is what is frustrating me.  And I have been the bearer of this news to patients before, the whole “the human body is a mystery, we don’t know why certain things happen, each person is an individual” speech.  I hate to be the recipient of such a speech.

So this week I felt better from the methotrexate by Wednesday.  Hopefully  next week it will be by Tuesday.  I will have some decisions to make regarding my occupation.  Although I no longer work in a hospital, my current job is still very demanding and stressful.  It requires a lot of long hours past 8-5 Monday through Friday.  I have some thinking to do.

Here is hoping that my weekly dose of poison is nice to me tonight!!