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!!!

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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….

 

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…

T: Time

They say time heals all wounds.  Well, maybe.  I do have to say from the onset of the fibro in 2005, my symptoms are much better. Under control.  But I did develop a new disease in the meantime.  Is that related?  I don’t know.  But I do know through my communications in the fibro community that it is not uncommon for those with fibro to develop autoimmune later in life.

Over time I have learned a lot.  As a nurse, I already had the database.  But you never truly UNDERSTAND an illness unless you have experienced it firsthand.  I firmly believe that.  A doc/nurse/PT etc can be the best in their field at what they do, but unless they have had the disease themselves, I truly feel they cannot understand it.

One of my best docs, a migraine doc in Pittsburgh, actually gets migraines.  And he tells his patients that he gets them too.  He tells them what it is like for him, what works for him, etc.  His research is driven by wanting to heal himself.

I have learned that chronic illness sucks.  It really does.  Being sick EVERY FUCKING DAY is really awful.  I have good days and bad, but the last time I felt completely “well” was in July of 2005.  Nearly a decade ago.  That’s a long time to be sick.

I have learned that not everybody understands.  That is a hard lesson to learn.  But you find out pretty quickly who your real friends are.  And you can even keep some of the ones that don’t understand, just don’t talk to them about your illness.

I have learned to keep my mouth shut.  There is a stigma about chronic illness.  Invisible illness.  Most people who aren’t experienced with it think we are fakers.  That we act a certain way to gain sympathy.  To get on disability.  I have leaned to be cautious with who I share my health history with.

So time has brought me some understanding, another illness, and caution.  In the future I hope it brings more research, better meds, and no more surprises.  Unless the surprise is a baby.  That would be a welcome surprise.

 

Q: Quiet

 

Quiet. Solitude.  I’m one of those that need it.  I grew up in suburbia, leaning more toward the urban part of that word, but since I have moved to Texas, I have been enjoying the quiet and I think it is very beneficial to reduce stress and to promote health.

I haven’t meditated in awhile.  My “S” will be on “stress”, so you will see more on that there, but my current situation doesn’t allow for much meditation.  There are just too many people living in this house.  There is too much going on.  Four adults, one child, two dogs, one cat.  Too many creatures breathing in too small a space.

I’m writing this a few days in advance.  I woke up (not on purpose, as Sunshine have a nightmare about American Girl dolls chasing her last night) to watch the eclipse last night.  It was cold, and probably didn’t help my pain.  But I wrapped a blanket around myself and went out to watch it.

No one was up (at least for a little while).  I could hear nothing but the wind.  Even the neighbors dogs were quiet for the time being.  It was so peaceful.  It was something I needed.  That solitude.  That time to just relax and be.

And then my mom woke up to see what I was doing.

But it was nice while it lasted 🙂

P: Pars planitis

 

Pars planitis is the term my eye doc uses to generally describe my eye condition because he really has no clue if its sarcoidosis or something else.  Here is an overview from parsplanitis.org:

Pars planitis is a form of uveitis, one of a diverse group of potentially blinding but treatable inflammatory eye disorders affecting the middle layer of the eye know as the uvea or uveal tract.  Pars planitis can occur in one or both eyes. It can affect children as well as adults.  In some instances, the disorder occurs as a complication of systemic illness. In other cases, the cause cannot be determined.  In either instance, pars planitis is a treatable condition and may require the use of systemicimmunosuppression medication and/or surgery to halt its progression. Untreated, 20% of patients with pars planitis will have significant vision loss, and some will become blind.

Yeah.  That shit is scary.

Even as a nurse, I never knew that autoimmune diseases could affect the eye.  Until I found out the hard way.

So it’s rare.  It’s difficult to treat, it most likely involves needles or surgery IN THE EYE and it might never be gone.

Great.

As of today, I have been off of steroids for 8 months.  I have been off of methotrexate for almost a year.  I haven’t had a MAJOR recurrence, but the floaters are still there.  It looks like an old movie reel.

My night vision has improved greatly to where I feel comfortable driving at night.

I still have difficult adjusting from bright light to low light and visa versa.  Small print gives me difficulty.  I very rarely wear contacts because the irritation they cause isn’t really worth the effort.

I found out later from my doc that he thought I was going to go completely blind.  He didn’t want to tell me at the time, but at my last few visits he shared that with me.  Mainly to highlight that I’m 90% better than when he first saw me.  I still don’t like hearing that he thought I would go blind.

I see him in a few weeks, and hopefully I get another good report.  I don’t know if I will ever be completely “out of the woods” but its nice not to expect a needle in the eye at every doctor’s appointment.

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.

H: Help (!)

H

 

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

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

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

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