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….

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Two months…yeah…that’s about right…

Yes, I moved.  It was as horrible/wonderful as I anticipated.

The past few months have been a whirlwind.  And in the whole moving process, I got locked out of my WP account.  And in the few minutes each day I had to sit down at a real computer to try and rectify it, I kept getting the runaround with WP.  I finally was able to get back into it today.

In addition to moving I was offered and accepted a full time position.  

I guess that is the true mark of recovery.  Returning to full capacity as a productive citizen.

This one comes with a caveat though.  I’m not working a true 9-5, M-F.  I’m doing weekends on-call at my hospice.  Meaning I go “on” at 5pm on Friday, and I am “on” until Monday at 8am.  I receive all calls that come in to the two offices in the area, and I am responsible for the visits, emergency visits, deaths, admissions that come my way.  I do have back up, and a fantastic support team.  Its like a condensed version of a work week packed into the weekend.

After a full month of working this way, it is kind of better for me.  Instead of my workdays spread out over five days, I get it all done in two.  I usually recover on Monday and then I have Tuesday through Thursday to spend with Sunshine and my husband.  I spend Friday gearing up for the weekend to come.  

Health wise I’m doing ok.  I started increasing my Lyrica by 25 mg in June, but the side effects weren’t cooperating with my schedule, so I abandoned it and I’ll restart it soon.  

We also found out that my husband needs a pretty extensive surgery, so he will be taking front and center in our health dramas starting next week.  It sucks.  I’m not happy that this is happening, but I do appreciate the opportunity to be giving back to him and to be caring for him as much as he cared for me over these past years.

So I didn’t drop off the earth, just been busy, and locked out.  Hope everyone is well!!!

W: Work

 

I am back to work.  In my numerous years of chronic illness, I have only worked full time for less than half of them.  I’m not sure if I will ever be able to work full time hours again.  Although I try.

I am a nurse, as I have stated numerous times on this blog.  That makes it kind of difficult to work with a chronic illness.  At the time of my diagnosis with fibro, I was working night shift in the ICU.  Yeah, that wasn’t going to happen ever again.

I’m sure it’s possible, but for me it is not.  Not too many people can withstand more than a few years “running the floor” without some sort of health issues.  Most nurses eventually burn out and move on to some other type of nursing.  For me it was telephonic nursing, then hospice.

The reason hospice works for me, and home health probably would too, is that I set my own pace.  I’m not in a busy clinic, floor, ER, OR, etc.  I see a few patients per day.  I stay “PRN” meaning I work when I want.  “PRN” mean “as needed” by the way.  I don’t get benefits, but I’m not obligated to work a forty hour work week within set hours either.  I can refuse assignments.

The problems for me right now mainly deal with the fact that I am so eager to move out that I’m working A LOT.  Currently I’m pulling on call shift 2-3 nights per week.  I’ll be doing my second weekend in a row as well.  In addition to the 3-4 daylight shifts I’ve been picking up.

When I’m on call, most of the time we don’t have any issues, but I can’t take my sleeping meds.  So I don’t sleep very well.  So by the end of the week I’m in pretty bad shape.

But I am happy to once again feel productive.  I’m so happy to be back in my element as a hospice nurse.  I truly feel “at home” in this type of nursing.  I know what I’m doing, I’m confident in what I’m doing, I work well in the team atmosphere.  I have years of experience and I’m not afraid of death.  And I have a wicked gallows sense of humor.

So right now, work is great.  I hope it stays that way…

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….

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.

Making paper

It feels so good to get paid.

We are by no means out of our situation.  But seeing that check with my name on it with a decent amount attached to it is so fulfilling right now.  That entire check is going into savings.

Right now we are looking at the end of April for the move.  We want to be sure to have all of our bases covered.  I’m not even looking at places until we have a decent amount in savings to put down on a place.

The real estate market here in the Austin area is phenomenal.  Buy or rent, places are only on the market for less than a week before they are snatched up.  So I want to make sure I have all the little duckies in a row before I look and find something I like.  I don’t want to be disappointed.

Work isn’t horrific.  I’m tired.  I’m trying to rest.  But I’m so anxious that I’m offering to do ANYTHING to make myself valuable.  I’ve been on call this week, I’m doing call for a few weekends in April.  I’m volunteering to do marketing, chart review, clean the stock room, anything to get hours.

It just feels good to be productive again.  To contribute.  I have never been one to want to rely on someone else for my well being.  Ever.  One thing my parents (especially my mom) drilled into my head as a teenager was that I needed to get an education to get a good job so that I could support myself.  To never rely on someone else.  I never knew how much that advice would come in handy at the end of my first marriage.

So these past few years of relying on others have really torn me down emotionally.  For someone that makes a living…for someone who’s calling is taking care of others, being the one who needs to be taken care of is a real mindfuck.  It is guilttrippy.  I know those aren’t words but that is how I feel.

I like money…

Gainfully employed

I started back to work today.  A permanent job with permanent hours.  Its pretty much everything I was holding out for…hospice…part-time…flexible hours..in a territory close to my house.  I’m anticipating it going well.

The next week or so will be orientation.  I sat in front of a computer screen today and did policy and procedure modules. I’ll get more of that the rest of this week interspersed with meetings.  Next week I’ll be out in the field with one of my nurse friends that I used to work with at another hospice.  She put in a good word for me at this job.

I’m just anxious to be helping people again.  I know it is hard to explain to people who aren’t in this profession, but I miss it.  I miss the human interaction.  I miss listening to people, helping them solve problems, educating them.  I truly love being a nurse.

I didn’t sleep well last night, I’m chalking it up to nerves.  So some of the modules were somnolence inducing.  Tomorrow I get to meet more of the team.  I’m anxious to see how things work with this company.

I’ve mapped out the paydays and we are looking at moving mid-April.  It can’t come soon enough.

The pain has subsided with the rise in temperature.  Yesterday was BRUTAL.  Ice is not my friend.  I live here for a few reasons.  One of them being so I don’t have to deal with the total bullshit called winter.  This was my backyard yesterday morning:

grill

We used that grill a few days before…in 80 degree weather

 

I am soooooo looking forward to warm weather.  I don’t mind the heat.  I may occasionally complain when it gets into the triple digits, but I definitely prefer it to this crap.

SXSW starts this weekend.  I will be down there next Thursday night (my birthday) in hopes of feeling “cool” and “trendy”.  I didn’t get to go last year because of my health, so I’m looking forward to it.  I think its hilarious the things that I do now in my 30s that I didn’t get to do in my 20s.  Maybe its because my husband in my 30s is much more fun..

Very happy to be among the productive, contributing segment of society again.  Its hard to explain how this feels to someone who has never experienced it.  Even though I was (still am) sick, not being able to support myself, having to rely on others is a horrible feeling.  Although I have a wonderful husband who has never ever made me feel at fault or responsible for the situation we are in, it still sucks.  Seeing him work so hard at TWO jobs, one on night shift, just makes it worse.

So hopefully after a few weeks he can cut back, and we can get back on our feet and our situation can change.

Very optimistic right now.

 

 

 

 

 

 

 

 

Migraine city

Weather-Worst-Migraine-Trigger-300x199

 

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

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

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

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

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

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

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

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

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.