I survived…barely.

My husband had surgery July 25.  He is just now returning to his baseline.  It has been a rough month.

I’ve been a nurse for over a decade.  I grew up in a “nurse family”.  I am not a nurse for the money, trust me.  I truly feel a calling to help others.  Specifically those at the end of their life.  But you never forget basic nursing skills.  I think it is unfortunate that I had to use these skills while my husband was in the hospital.  I am appalled at the level of nursing care he received.  During and after.

I have to say that his surgeons were excellent.  And continue to be absolutely fantastic.  I have never had a surgeon hand out his cell phone number and say “call me with anything”.  He also took it upon himself to call my husband personally after the surgery to check on him.  The surgeon even did the post op tests himself as well.  I am truly amazed.

He had some set backs with infection, inadequate pain management, etc.  But now he’s on the mend and should be officially returning to work next week.

I, however, am exhausted.  I am working full time on the weekends, and that didn’t change while my husband was recovering.  Work was fantastic with understanding that my family comes first.  But going from taking care of my patients and then taking care of my husband at home has been particularly taxing.

Top it off, I am insane and agreed to watch some of Sunshine’s friends for the rest of the summer.  So I have had at various times up to three of her friends here.  Its about 100 degrees outside, so its not like I can just kick them out to run off their energy.  And with a gaggle of seven year old girls, there is always drama.  I am very much looking forward the first day of school on Tuesday.

So the fibro is flaring, but I am able to work.  I have been able to take care of my husband.  I just need a break….

X: X factor

 

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

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

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

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

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

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

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

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

So I am aware.

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

 

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….

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.

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.

B: Balance

B

 

Balance is something I struggle with…as a mom, as a nurse, as a wife.  I guess most people struggle with this, but it is harder when your body doesn’t listen very well.  I have had chronic illness for nearly 9 years, and I still struggle.

But I have learned some valuable lessons:

Take care of your body.  Learn what your limits are.  Right now, my tolerance for shopping is about an hour in the grocery store at ultimate health (think 100% life on video games), probably 30 minutes when I’m flaring or stressed.  I’m at about two to three stores (for about 20-30 minutes) if clothes or Christmas shopping.  I have to adhere to these rules or I run the risk of outpacing my energy sources and crashing.

Rest means REST!!!  I don’t have to sleep, although sometimes that is helpful, but keeping my body quiet, in a peaceful and quiet location for at least an hour is optimal.  That means no interruptions, no getting up constantly to serve a certain seven year old, no putting out petty fires that other adults can’t seem to solve on their own.

Understand that your body is different.  Your body doesn’t function the way it once did before.  It no longer has the endurance, the ability, the properties to hike all day, to go on a 12 hour shopping spree, to do the things it once did.  You may be physically able to withstand these activities, but the payment in terms of recovery is often more than the enjoyable activity in the first place.

Learn your body, learn your limits.  Strive for balance so you don’t spend your new life miserable, in pain and in bed.

My grrrrrr face

20140228_113003

Yes, this is my grr face.  Today is a BAD pain day.  In hindsight, I can see how this all transpired.  The “four seasons in one week” weather is contributing.  I have been running around trying to get a job, which I may have succeeded in doing.  I am emotionally spent.  I went on a date TWICE this week.  The second one probably did me in.

It was 34 degrees on the night of date number two.  And we went to an outdoor concert.  They have outdoor events nearly year round in Austin  because it rarely dips below freezing.  But we pick the one night in the past two weeks where it WAS near freezing to go to an outdoor show.  Figures.

Oh and we sat in metal chairs.  That did wonders for my fibro.

But we had fun.  We saw the Spazmatics at Cedar Street and they were fantastic.  Although I was born in the early 80s and wasn’t really old enough to get into the music scene, I knew all the songs and loved the energy.  Definitely what I needed.  A night of fun.  A true date night.  Absolutely loved it.

20140226_215644

So it is all catching up to me.  And since I’ve been rapidly titrating Topamax, I’m dizzy as well.  And I spent most of yesterday in the car running from my potential new employer to a drug screening, to the car dealership, to the store, to the mailbox place, to a friend’s house to scouts.  People who don’t experience what we experience don’t understand how awfully draining just driving can be.

This morning I woke up and literally couldn’t move.  My hips and low back were frozen.  Every time I tried to move, even a little, I gasped.  It was like my body was cut in half.  My husband, who just returned from his night shift, got Sunshine ready and off to school.

There are things that I HAVE to do today.  Like laundry.  I have no clue what Sunshine wore to school today.  If it matches, if it’s clean.  We are to that point in the laundry cycle where I MUST do laundry or we will be wearing bathing suits.  So that is adding to the misery.

My parent’s dogs are collaborating to make me insane by whining to go outside every two minutes.  They can’t coordinate their peeing/pooping/barking and the wind schedule.  So I’m getting up and down constantly.  Again, this is something that someone who doesn’t have these issues will never understand.  The whole act of hoisting my screaming body up from a seated or lying down position is extremely excruciating.  The same with getting back into said position.  So much so that I spent at least a half an hour pacing just to avoid the frequent up and down.

I can’t find my heating pad.  I can’t find my biofreeze.  I took an extra hot shower this morning…getting into the tub was fun.  I already took tramadol and I don’t want to take another because I do have to drive to pick up Sunshine this afternoon.  I have been stretching, but today, that is seeming to make it worse.  I have already warned my mother that I will need her assistance this afternoon.

And I’m not eating.  It is doing wonders for shedding of the steroid weight, but it might be contributing to this entire feeling like shit mess.  I think its the Topamax and the emotional upheaval.  I’ve been living on Fruity Pebbles and cottage cheese for the past few days.  And I pretty much have no desire to eat anything else.  Not even the Girl Scout cookies I have stashed away.

I keep telling myself that I can hold out another month or two.  The weather will improve.  Usually when it gets into March, we won’t see these roller coaster “four seasons in a week” periods.  I will hopefully get hired in the next week and can get back to work.  We can move out.  That will do wonders for my health.

As Sunshine grows, she is amazingly more supportive.  She hasn’t known anything else than a chronically ill mom.  She knows that I don’t prefer this.  She knows that when I feel well enough, we do the park, we do the mall, we play, we giggle, we have fun.  But on days like today, sometimes we just snuggle under the covers.  She gives me extra hugs.  She brings her stuffed animals to snuggle me as well.

I am eternally grateful to her Girl Scout troop.  Her leader and several of the moms know my issues.  They are great about helping out with transportation and play dates and getting her to and from events when I can’t.

So today sucks.  It will be 80 degrees tomorrow, so it will be better.  But then it is supposed to get cold and rainy again next week.  I honestly prefer the searing heat.  At least it is consistent.

It’s a full time job…

work

And no, not one that actually pays me.  I’m talking about trying to get my medical issues paid for even when I have insurance.

My husband has United Healthcare.  And I am thankful to finally have insurance, but the hoops I have to jump through to get anything paid for are absolute insanity.

He has an HRA, which I am slowly figuring out.  They basically put money aside from his company (not just the FSA, I’ll get to that in a second) to pay the deductible.  Half of the deductible.  No copays until the deductible is satisfied.  My deductible is $3,600.  But I’m halfway there on February 1st.

But trying to get the HRA to reimburse ME for out of pocket expenses is like pulling teeth.  I submitted one bill in the first week of January.  They said they lost it.  I submitted it again the following week, they said that they couldn’t read my name on it.  They actually told me to take a pen and go over the name and amount on the receipt so that they can see it better.  FML.

So I am trying to resubmit right now, have been for the past week, and it is either their site being down, or something wrong with the settings on my computer, because it won’t upload.  But I can upload things just fine to other sites, including ADP (that’s another headache).

I have even toyed around with the settings on both this computer and my own laptop.  Nothing will upload.  So I will go the fax route.  But they don’t understand that not everyone has a fax machine, and to get to one i.e. Kinkos or a mailbox place, entails a chronically ill person getting out of the house and physically making it to said fax machine. Fuck.

Now ADP.  I hate them.  With a passion.  I have used the brand new FSA card to try and pay for this shit.  And they promptly cut it off after the first transaction.  And they won’t just take a regular receipt.  It needs to be a “detailed” receipt.  But at least their site lets me upload.  It just takes forever to go through their system.  So maybe I’ll get access to the money my husband already has set aside for us to use in the near future.

And its not like I actually need this money or anything.  I just have thousands of dollars sitting around to pay these out of pocket expenses.

So I am patiently waiting for the mailman to get here with my husband’s paycheck so I don’t have to be relying on Sunshine’s cookie money to keep gas in the tank.

That’s another headache too.  My husband works for a multi-billion dollar international company.  He has been working his ass off since he got this job, on night shift no less.  He volunteers for overtime.  Yet he has had not one paycheck that wasn’t completely fucked up.  And it is not just him.  All of his friends have had issues with their pay for MONTHS.

He has been working there since the end of October.  He has submitted his forms for direct deposit FOUR TIMES.  FOUR FUCKING TIMES.  And yet it has not gone through.  He used his PTO to go to Delaware last month.  His first paycheck when he got back did not include his PTO.  That was fun.  Nothing like expecting a paycheck for a thousand dollars and getting one for $400.  There was also the time that they mailed him a paycheck, and then stopped payment on the check for no reason.  Right now, his company owes us like $300 in overdraft fees.

This last paycheck, they shorted not just his overtime, but his shift differential as well.  And the HR people at his company are complete assholes.  I mean the ones at his physical worksite, corporate is fantastic.  But these assholes act like they couldn’t be bothered to actually do their jobs.  They act like them not paying him is none of their concern.  And because they are only there from 8-5, and his shift is 6p-6a, he rarely has the opportunity to see them with his issues.  And no one will talk to me.

And I am still on the job hunt.  But I got some bad health news today, so that might be stalled.

I had a colonoscopy/endoscopy done on Monday. There is “inflammation” in my stomach and intestine, but they don’t know what is causing it.  I have to wait for the pathology report.

My pain has been just awful.  My joints are starting to swell and I can feel the warmth and see some of the redness.  So I saw the rheumatologist yesterday.  She is VERY concerned about the GI stuff.  She told me that just based on feeling my joints, they are inflamed and swollen.  So she got xrays of my hands again and drew 6 tubes of blood to see what is going on.

On the positive side, maybe this will clear up what is actually going on with me.  Maybe the biopsy from my gut can finally tell them if it is sarcoid or not.  Maybe my blood will come back positive for something else other than just an elevated lysozyme level.  Not that I’m hoping for another diagnosis, I just want a CLEAR diagnosis.  Something that says “yes, you have this disease, and this is how to treat it”.

Ugh.  Off to apply for more jobs.  That alone is another full time job.  “No, we won’t accept your resume, you have to list every single employer you have had for the past 10 years, their address, their phone numbers and your supervisors that probably aren’t there anymore”.  And given that people with chronic illness tend to change jobs or have holes in their employment history, this is a fun task.

I’m pretty sure I have lost out on three jobs right now because I answered truthfully when they asked “and why did you leave your last job?”  I said “because of acute illness”.  I specified “acute” because that is different from “chronic” and I already learned a long time ago to keep the fibro under wraps.  So now I’m going to start lying.  “Oh, I didn’t feel like working anymore” and keep this entire fiasco under wraps.  I just feel so wrong about it.  I don’t like concealing the truth, and if someone is going to invest time and money to train me, I don’t want to come to them a month later and say “I need to take some time off because I’m sick again”.

And these aren’t even full time jobs.  I’m specifically looking into PRN jobs.  In the  nursing world, that means “as needed”.  Most of these jobs ask for a set schedule, but you aren’t “forced” to work 12 hour shifts or weekends.  They usually don’t come with  benefits, but I don’t need them.  This was my plan BEFORE the autoimmune diagnosis.  To go PRN once my husband found a job with benefits.  Something flexible so that I can work more when I’m healthy and bow out when I’m not.  It’s not an issue of not wanting to work.  I have been sick long enough to know that I CANNOT work full time, unless it is something so benign and easy that I don’t move much.  Good luck finding that as a nurse.

So if anyone has any ideas on any of this, how to navigate this insurance nightmare, where I can work, give me a clue.  I’m very frustrated right now with this state of affairs, not to mention my living situation.  Sorry for the rant.  Thank you for reading.

Day 26

Share:  A difficult time in your life

I read this title and started laughing to myself.  This entire blog was created because of a difficult time in my life.  It’s getting better, slowly, but this is probably the most stressful it has been.

I’ll update instead:

I survived my trip to the east coast.  Yes, it was cold, but apparently we got out just in time to avoid the polar vortex (of doom). I got to see my bonus son and spent some time with him.  That was awesome.  His mom behaved, mostly.  I spent some lovely time with my husband’s family.  They are so warm and welcoming.  A bit different from my current situation with MY family.

But the traveling and the weather got to me. And I needed two days to recover when I got back to Texas.

Things with my mom were worse when we got back, however.  I won’t go into details.  Apparently I’m a horrible mother.

Health wise, my eyes have inflammation in them, but not to the level he wants to treat right now.  My cataract isn’t getting worse.  So good news.

But the reflux and bleeding in my stomach is pretty bad.  I am scheduled for a scope (both ends) next week.  Fun times.

My pain from fibro has increased.  I think its the stress.  My joints in my elbows, hands, hips and ankles are killing me. I am supposed to see the rheumatologist sometime this spring, if I can wait that long.  I’m going to have her run my ANA again.

And the job search has begun in earnest.  I’ve had two interviews so far.  I’m hoping to hear back from them soon.  It is difficult trying to find a job in my industry that can go along with my illness.  I’m honest about what I went through.  I don’t want there to be any surprises if I take a job and my eyes get worse.  I’m mainly looking for part-time, something that isn’t intense or requires a lot of travel or being on my feet.  Good luck finding that nursing position.  If we get a new car, which might be happening fairly soon, I can return to hospice part time.  Fingers crossed.

Sunshine is amazing.  She just got an awesome report card.  She’s selling Girl Scout cookies (anyone want some?) and she is such a good little businesswoman.  She was taking orders from her classmates.  I had to explain to her that their parents probably need to order the cookies, since the kids aren’t carrying cash around with them.

My husband is also amazing.  He’s working so much, but this is a team effort.  I’m essentially his secretary, I get things done while he’s in his work cycle.  Because he works 12 hour night shifts, I don’t see him that much for four days out of the week.  But its worth it.  He’s already gotten promoted twice.

And my mom is working a lot more.  Which means we are getting along.

Today, things are looking up.  I hope by the end of the weekend I’ll have even more good news.

Thank you for reading!!