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!!

Day 22

Tell me:  What do you want to do for a living?

My dream job is to review books for a living.  And to get PAID decently to do it.  I absolutely love reading.  And if I could ever find a way to get paid to do it….wow.  Right now I get paid in books, essentially, someone sends me their book for free in exchange for a review.  So that’s pretty good.

As a nurse, I would love to be some type of a “healthcare navigator” to people who are chronically ill.  Yes, they do have these positions available, but many of them are through health insurance companies, and not located in this area.  The problem with working for corporate health companies is that they want ROI (return on investment), which I understand, but you can’t quantify what nurses do in terms of money.

One company I worked for in a position similar to what I would want had all of these algorithms to determine just how much my time and advice was worth to the customer, the insurance company.  I hated being told that I couldn’t talk for longer than 10-15 minutes, that I had to hit these specific talking points, that I was restricted as to the things I could talk about.

I envision something like what I would have needed when I first got sick.  What is this disease, what are the treatments, what is the research, who are the doctors in my area that can help me?  How can I use my insurance (if they have it) to treat this illness.  What are some other resources in my area, how can I afford this?

I envision it all in one location, one person that knows the story and can navigate the person through the maze that is healthcare.  It would have to be mostly independent in order to truly serve the client, and not the insurance company.

So if anyone has an MBA and is willing to help find funding for this venture, or knows of a company that does things like this, let me know.

 

Day 17

Where do you work?

Well, I’m currently looking for a job.  I had an interview today, but I’m not sure I’ll get it.

I am a nurse.  I have been a nurse for 10 years.  I have a wide variety of experience, from peds to ICU.

After my first brush with chronic illness in 2005, I was advised to stay the hell out of the hospital.  I contracted one of those lovely hospital associated infections and was sick for 9 months.  I have been told repeatedly that my immune system is not normal and I should minimize my exposure to horrific illness as much as possible.

So the hospital and hospital like care centers are out.  That is probably 80% of the field of nursing.

I have done “telephonic nursing”.  I absolutely loved it.  I was able to talk to people all over the country about being healthy, their chronic illnesses and medications.  It was very rewarding.  I left that job when I left my ex husband.  And it killed me to do so.

Since I’ve been here in Texas, I have done public health nursing, which I found boring, and then I went into hospice.

I love hospice care.  I can  handle it, which many nurses can’t.  After my years in the ICU, where I had to disconnect vents, see people perpetually kept in a state of limbo between life and death, providing a “good death” for my patients is key.  A “good death” is where the patient passes away at a location of their choosing, usually at home, and without pain or discomfort.  Patients get that with hospice.

Many times they are diagnosed with something like cancer or lung disease and they decide to forgo all treatment and focus on quality of life rather than quantity.  I have seen patients do some amazing things with the time they have left.  It is very rewarding, very spiritual, very emotional.

My problem with hospice right now is that I don’t think I’m well enough to carry a full caseload of 12-18 patients.  Each patient needs to be seen once a week at the minimum.  Sometimes more.  And the Austin area is pretty spread out.

When I got sick with the autoimmune disease, I was seeing 14 patients in a 50 mile radius.  I was doing 100+ miles per day on my car.  I was also working call on the weekend.  I see now that working so much probably triggered my disease.  So I’m trying to avoid that.

I’m looking for anything 16-20 hours per week that is office based, home based, in home health.  Currently my car is pitiful,  but hopefully we will be getting a new ride soon.

I am applying for telephonic nursing again, office jobs, hospice “as needed” nursing.  Hopefully I get something.

Anyone need a nurse?

 

Day 13

Something you’ve been putting off:

Getting my bachelor’s degree.  I started a year or two after I graduated, but then I was diagnosed with the fibro and soon after got pregnant.  I was unable to keep up with the demands of school, even online school, after I was initially diagnosed.

My bachelor’s degree is definitely needed if I want to get better jobs as a nurse.  There is an entire hospital system here in Texas that won’t even look at your resume unless you have your BSN.

I’d like to get my master’s as well, or a master’s in counseling.  I would love to help people with chronic illness understand the link between mind and body, and the things that they can do every day to decrease their symptoms.

But school is definitely on the back burner for at least another year.

I’m grateful that my husband encourages me returning to school and doesn’t demand that I work full time, due to my health.  He encourages me to better myself.  I love that.

31 Day Blog Challenge

31 days blog challenge!

I have wanted to do something like this for a long time.  My co-blogger over at The Eclectic Bookworm is featuring the blog challenge on her page.  The original post that inspired her is here.

Introduction and recent picture:

You can check the “about section”, but I’ll go into more depth here.

I’m 31, a mommy, a wife and a nurse.  I was born in Austin TX, was raised in Pittsburgh, PA for 25 years, and I moved back to Texas when my first marriage ended.

I have a wonderful, fantastic, fun, intelligent, funny little girl who I call “Sunshine“.  I prefer not to use her real name on my blog.  Being her mommy has made me a better person is so many ways.  She teaches me so much about life, love, patience and myself.

Our first "selfie" of 2014

Our first “selfie” of 2014

My (second) husband and I have been friends for 17 years.  We met on AOL when we were teenagers.  We lived about 300 miles away from each other, so our relationship prior to 2009 was mainly platonic.  We both married other people and had kids and then our marriages imploded.  He moved down to Texas nearly 5 years ago and we were married in the summer of 2012.

He is my rock.  My best friend.  We have so much fun together.  I am truly blessed to have him in my life.

I’ve been a nurse for 11 years.  I’ve done pediatrics, ICU, pain management, public health.  Most recently I was a hospice nurse for a number of years before my latest round of chronic illness exacerbation.

I haven’t worked steady in about 18 months because of my health.  Our financial situation became perilous about a year into my diagnosis, and we are now living with my parents.  It’s rough.

I am a huge sports fan.  I love hockey and football.  I’m a die-hard Penguins fan (even BEFORE the dawning of Sidney Crosby) and Steeler fan.  I was born into it.  It’s like a religion.

I do miss Pittsburgh sometimes, especially my friends.  But Texas has always pulled at my heart-strings.  I always wanted to live here and raise my daughter here.  Life isn’t what I expected.  I guess it never is.  But I keep on keeping on.  Hopefully this New Year will bring good health and a better living situation.

Oh and if you know anyone who needs a nurse, let me know…

Does it ever end?

Just got over the concussion, now I have a new crisis.

My initiation into chronic illness came 8 years ago.  I worked in the ICU as a registered nurse.  I’m not sure exactly how it happened, I was on antibiotics that have now been proven to cause these types of issues, but I contracted c.diff.

For those of you who don’t know (lucky you!) c.diff is a spore forming bacterium that is absolutely devastating to the GI tract.  Most people who contract it are ill, older or younger.  Around the time I got sick, they were finding that more and more “healthy” people were contracting it from seemingly innocuous means, i.e. after surgery or while taking routine antibiotics.  I was relatively healthy (no fibro yet) and 23.

They theorize that my strain was the more “virulent” type recently found in Canada and that was spreading its way across the U.S.

Symptoms are usually massive diarrhea, for me, over 24 times per day, along with horrific stomach pain.  They really don’t have effective treatments for it other than more antibiotics.  Some which are toxic.  They are still experimenting with a “stool transplant” (pleasant, I know) to infuse the infected gut with “healthy” bacteria.

I became violently ill and required hospitalization.  Twice.  I was losing massive amounts of fluid from the constant diarrhea, and the pain (the churning) in my gut was unbearable.  I came thisclose to requiring a colectomy and pooping into a bag for the rest of my life.

About four months into the c.diff infection, I was diagnosed with fibro.  The theory there being that the overwhelming infection triggered the fibro.

It was 9 months and down 40lbs (which I couldn’t afford to lose at the time) later when I was finally deemed infection free.

The day I received this news was the day I found out I was pregnant with Sunshine.

Unfortunately her biological father wasn’t as happy as I was at the news.  We were married for less than a year when I got sick.  And the toll of the medical costs, the loss of my income (since I couldn’t work) and the stress of my illness more than likely contributed to the demise of our marriage.

Given the overwhelming immune response that occurred, they (the docs) think my autoimmune issues might have been triggered at this time as well.  Which leads me to present day.

I haven’t relapsed since 2006, but I have had GI issues since that time.  I have been extremely cautious about any antibiotic use.  I also found that I have to be VERY VERY careful with NSAIDS (think ibuprofen, naproxen, etc).

After concussion #4 I was prescribed some heavy duty NSAIDS.  I developed bleeding in my stomach after that.  It was treated easily with Nexium, but from then on I have had to stay away from any type of pain reliever other than Tylenol or Tramadol.  Fun for someone with a chronic pain condition.

The long term steroids further damaged my GI tract. And with this last concussion, and the subsequent migraines it spawned, and the fact that I twisted my knee exercising, I dipped back into the ibuprofen.  My migraine meds have naproxen in them.  And now I’m completely screwed.

I’m having bleeding again, horrific gastric reflux, and severe pain right under my sternum.  I wake up with a sore throat every morning.  I’m changing my diet as to not increase the pain, but it really isn’t helping.  I’m eating Zantac twice a day.

The pain is about 6-7 in my stomach for most of the day. And its getting worse.

I have an appointment with a GI doc in January.  I’m hoping that my PCP can call in something like Nexium to quell this volcano in my stomach.

And did I mention that I’ll be on the East Coast for the week between Christmas and New Years?

I’m stressed, the family issue is tense, and Christmas is a week away.

I’m just hoping that I get some relief soon.

Take your medication EXACTLY as directed

The lovely hematoma from all the blood work and IVs.  I've had it worse before, but this one is solid underneath and painful.

The lovely hematoma from all the blood work and IVs. I’ve had it worse before, but this one is solid underneath and painful.

Good Lord, this week has sucked.

As a nurse, I deemed it prudent to completely take myself off my steroids.  If you have ever taken steroids, you know this is a bad idea.

In all fairness, I was down to 2mg (from a start of 60mg) and I honestly forgot to take them while on vacation for a variety of reasons.

I was a week or two out and I figured “hey, I’m not dead yet, maybe I can white knuckle some of these withdrawal symptoms and completely be steroid free!!”

I ended up in the emergency room.  Twice.

I woke up Tuesday with muscle spasms/contraction in all my limbs, but especially in my legs.  I could not control the frequent shaking and flailing.

I couldn’t talk.  I could stutter, I could stammer.  No coherent language.

And I was out of it.  I didn’t black out, but I was pretty much unresponsive at times.

Oh and my bp was all over the map, from 150s/110s to 92/palp.

And the sever pain in my lower back was horrendous.  Apparently this was my adrenal glands SCREAMING at me.

So the EMTs were called in on Tuesday to stabilize me and haul me to the hospital.

At the hospital, one I didn’t usually frequent and who wasn’t up to date on my condition, they missed that I was probably going through steroid withdrawal.  They gave me fluid, ativan, and sent me on my way.

I saw the rheumatologist the next day who put two and two together.  Apparently I should have had a cortisol level drawn and probably should have been kept for observation.  Shit.

She put me back on my steroids, wrote out a lengthy taper schedule (down by 0.5mg every two weeks).

I woke up yesterday with similar symptoms.  They weren’t as bad as Tuesday’s nightmare, but I could feel myself slipping.

So Mommy hauled me to the hospital (the one I frequent, to which my medical records are in their computer system), and I got fluid, steroids, and compazine.

I feel like a new person.

The muscle aches are there this morning, but so far I’m able to eat, able to move, able to talk and type.

The lessons learned?

Keep an ACCURATE list of medications and conditions on the fridge for these situations.  In the beginning I had done this religiously, but since I’ve been sick for over a year, I have slacked.

Have someone who knows your situation, knows how you have been recently, and who can advocate for you.  In this case, it was my mom and my husband.  I don’t know what I would have done without them.

And go to the hospital system that is most closely up to date with your condition.  In my area, there are three hospital systems.  I have been to two.

Finally, LISTEN TO YOUR DOCTOR.  Yes, I was permitted to taper my own dose of steroids, but I didn’t realize how poorly my body would react to the withdrawal of a substance I took for over a year.

So after $3,000+ in medical bills this week alone, I’m feeling better, physically.

And I have definitely learned my lesson.

 

You know its progress when you can finally sit upright..

Image

© Silverlily | Dreamstime Stock Photos & Stock Free Images

Thank you for the well wishes.  This truly sucks.

But, in trying to remain positive, I will dwell on the fact that I can now sit upright for periods at a time without getting too dizzy and nauseous.

That, my friends, is progress.

The bp meds are completely draining me.  As if I’m not drained enough.  But today was less draining than yesterday.  If that makes sense at all.

I did spend most of the day sleeping, and i haven’t done that in awhile (two weeks? ha!)

I am still trying to hold up my share of the housework, and actually did the dishes last night without too much difficulty (if I lean against the counter, I can steady myself).

I have had a few near misses while furniture surfing.  But those incidents are diminishing.

And I stopped taking my blood pressure every five minutes.  Being a nurse can really cause some OCD when it comes to stuff like this.

And the headache from hell which first alerted me to this issue is slowly fading away.  I am still confused as to which is the best pain medication for this situation, because it does feel similar to a migraine, but not entirely migraine-ish.  And I can’t take both the tramadol and the Treximet at the same time (something to do with serotonin), so I end up just randomly picking and seeing if it works.  So far the Treximet is winning.

I try not to think of the internal damage caused by this lovely drug cocktail.  Again, the nursing thing.  I have said it numerous times on this blog.  Sometimes having an education in the health field is dangerous.

It is bad enough reading all the fantastic side effects associated with these medications, it is another to see them in living color throughout your career.

And sometimes my mind will enter the never ending loop of medicines.  Example:  ok, if I am taking the steroids for this long, my bones might be weaker, should I take a calcium supplement?  But with some of these autoimmune diseases, there is a risk of kidney stones, so I shouldn’t take the calcium.  The steroids can also cause diabetes, should I be taking my blood sugar?”

It truly can go on like this forever, given my rather large list of medications I now need to take.

Then there is the other way of thinking.  My husband’s friend works at a health store.  I have been in to see his boss several times over the past year as I was just feeling worse and worse but had nothing to actually “test” for yet.  She is a naturopath, and thinks I should be treating this completely through supplements and diet.

I can understand that approach.  Herbs and natural products were there centuries (more than a millennia?) before modern day pharmaceuticals.  But I’m actually scared to come off the medications that are keeping the inflammation to a lower level.

That’s enough for tonight.  Hoping I feel better tomorrow.

Sunshine Knievel

© Ragnarock | Stock Free Images & Dreamstime Stock Photos

© Ragnarock | Stock Free Images & Dreamstime Stock Photos

 

I think I have sprouted more grey hair.

Yesterday was another BEAUTIFUL day here in central Texas. Like most children, Sunshine loves to play outside. She is of the age where I do feel comfortable letting her go out and play throughout the apartment complex, with frequent check ins.

My apartment complex is like Munchkinland. The child:adult  ratio is probably like 3:1. We live smack in the middle of it, right next to the playground.

Sunshine is a social butterfly. She pretty much knows everyone. And I know most of the parents in the complex. I usually feel comfortable that she is safe. Until yesterday…

Sunshine came home close to her time to come in for the night. Again, she was not wearing her shoes (I have no idea why this child refuses to wear shoes). I instructed her to go back to her friend’s house and gather her belongings and return home.

So I wait on the porch…I wait some more…and then I had to go inside for a few minutes to do something pertaining to dinner.

I come back out to see Sunshine climbing up on one of the platforms of the playscape at the playground…WITH ROLLER SKATES ON HER FEET!!

I have no idea how I made it down to the playground that fast. I was in my “lounging clothes” (read a ratty tanktop and shorts, no bra and no shoes. That is probably where she gets the “no shoes” thing) and had to literally scream over the din of children playing to prevent her from going down the slide with roller skates on.

I made it just in time. She was about to put her roller skated foot on the sliding board when she turned and noticed me. Thank goodness.

Now, I am a nurse. I used to work in pediatrics a decade ago. I have seen kids with broken bones, long hospital stays because of injury, adults with traumatic brain injury. But even that knowledge isn’t needed to know that riding roller skates down a slide is a bad idea. Especially with no helmet or safety equipment.

When she (carefully) came down to semi solid ground, she got the full wrath of Mama.

“What were you thinking? Who’s skates are these? You were supposed to come right back! WHAT ON EARTH WERE YOU THINKING?”

Sunshine: “I don’t know, Mama, it looked like fun”.

Be still, my pounding heart. I then gave her the usual Mama response: “do you know what could have happened?”

Sunshine: “Yes, Mama, I could have cracked my head open”.

Me: “You knew this and you still wanted to do this?”

Sunshine: “Yes, Mama. Because Lucy cracked her head open and she’s fine”.

Apparently Lucy is the rightful owner of the roller skates. Perhaps that is why she was allowing other children to partake in her “roller skates of doom”.

Walking back up to the apartment (after finally locating her shoes) Sunshine looks up at me and says: “I’m probably grounded aren’t I Mama” Me: “Oh yes you most certainly are”.

She also was treated to an earful of stories from me and my husband. Apparently he was a daredevil too, and once snapped both of the bones in his left forearm while jumping from a swing into a pile of leaves when he was 10. His arm broke his fall.

Hopefully, she learns from this, and I don’t catch her trying to prematurely grey my hair again.

ICK!!

Have I mentioned recently how much I hate this disease??

There might be some ick factor here, but if anyone has suggestions on what it could be or what I could do, it would be helpful.

Apparently the methotrexate (at a less than optimal dosage), is lowering my immune system so much that I am breaking out with rashes.

I have tried baking soda (detox) baths, benadryl, using antifungal lotion, hydrocortisone cream.  And I’m on day 8 of this.

When I was pregnant, I had a horrible, horrible PUPP rash.  I still don’t understand the exact mechanisms, but it strikes later in pregnancy and it is maddening.

This rash is kind of similar.  I am running the risk of infecting my skin because I’m itching so bad.  I’m half tempted to do the “mitten” thing so that I can’t scratch it.

I finally broke down and called the doctor today.  Once I finally get disability money (from my employer), I can actually pay for a visit.  So I made one for next week when I hopefully will have said money.

I did ask the doc to call in fluconazole.  I needed three doses of that shit last fall to clear my skin.  Hopefully she will call it in and I don’t have to wait.

On one blog I read, the blogger broke out with a similar rash after eating increased amounts of sugar.  I hope that is not the case.  Because if it is, I will be itching for a long time.

The prednisone cravings kill me.  I just have this insatiable need to eat cookies, ice cream, cake.  I have been trying to curb it by not baking more cookies.  But then Sunshine had to become a Daisy scout, and now I have unlimited access to thousands of cookies.

Right now, the typing is keeping my hands busy and stopping me from scratching.

I also found out that I should no longer drive at night.  The hard way.  I spent some time at my parents’ house the other day.  I didn’t leave until 9 or so.  The ride home was quite interesting.

I can only see the middle of the road at night…the only parts where my headlights hit.  And I live in Texas, which apparently doesn’t like to make light poles.  I seriously thought about pulling over and calling someone.  And it was only a 10 minute drive, if that.

I don’t like driving in general anymore.  Muscle pain, fatigue, it constantly feels like I’m driving without power steering.  And the eye stuff just freaks me out even more.

I did find a facebook page for “pars planitis” which is now the official name of what I have.  It is a small group, because this shit is really rare.  I did get some feedback on the night driving thing in that others have this complaint, and it seems to be permanent.  Fantastic.

I see two docs next week.  I plan on researching this eye thing even more so I have educated questions to ask each of them when I go.

Even though I’m a nurse, I suffer from temporary amnesia when going to the doctors.  I have no clue why this happens.  I could advocate for a patient and correctly convey to the doc what was going on with them, but with myself, I just go blank.  I’ll blame the brain fog and chemo for this.  My husband has gone to appointments with me and pretty much has had to prompt me through the assessment.  I am so glad he has an impeccable memory.

So…back to the doctors next week (once money permits).  I am really starting to get nervous that my eyes haven’t cleared yet in the past seven months.  And that I am having such a hard time with methotrexate.

ICK!!