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…

Day 15

Tell me:  How are you like your ma/pa?

Despite our difficulties, I can readily identify the traits I share with my parents.

Apparently, I have my mom’s facial features.  People have seen us and said “I can tell you are related”.  Which is strange, to me at least, because when it comes to physical features, I am a copy of my dad.

My mom is Polish/Irish, with blond hair, green eyes.  Obviously she’s white.

My dad is Mexican.  Dark hair, eyes, skin.

I look just like my dad.

My dad is quiet.  He loves reading, especially history books and zombies.  I’m just like him in that regard.

My mom is very dramatic.  Very opinionated, and very free with her opinion about everything and everyone.  Although I can be dramatic, I rarely share my opinion unless directly asked.

Like both of them, I became a nurse.

Like both of them, I am a die hard Steelers fan.  And like my dad, I’m a fanatical Penguins fan.  My mom likes hockey, but she doesn’t watch nearly every game like I do.

I’m a good cook, like my mom.  My dad’s specialty is breakfast.

Sunshine looks like her grandma.  People seriously ask if she is adopted.  When I lived in Pgh, people looked at me like I was the nanny i.e. “where did you steal that white baby from?”

Sunshine will never be called “quiet” in her life.  In that regard, she takes after her grandma.  But she has an enduring love for animals, and one of her favorite things to do is to take the dogs for a walk with my dad.

It’s interesting to see the traits that Sunshine has inherited.

And I hope Sunshine doesn’t take after myself and her grandfather with the autoimmune disease.

Good news…and getting back on the horse..

Friday I saw my eye doc.  No inflammation for the first time in over a year.

Per that doc, I don’t have to get back on antiinflammatory meds unless I have other symptoms that need treated, like joint pain and fatigue.

So far, so good.

My vision still isn’t fantastic, and once I get health insurance again (if that miracle occurs), I need to see the kind of eye doctor that prescribes contacts and glasses.

But I did two things that I haven’t really done in almost a year. I drove a car and not just to the grocery store less than a mile away, and I worked.

I am not foolish enough to believe that I can jump right back in to full time work.  I signed up with an agency that does health screenings for corporations and I was able to do five hours of ht/wt/vitals etc without dying.

I had some iffy moment with dizziness, difficulty with memory, difficulty lifting things.  But I worked and didn’t require EMS response.

Today, I feel like ick.  I think its more of the fibro and a combo of emotional stress.

Yes, the money is still an issue.  Add in the fact that my family (read:  father) is still punishing me for looking for alternatives to asking him for money.  I think that emotional distress is causing more pain than my disease processes combined.

But, I’m happy I am able to do SOMETHING.  And if anyone is willing to pay for a private nurse to advise their health decisions, I’m always looking for that type of work.

Until then, I hope I get more work through this agency, and the goal is to be back to full time work in the next six months.  Providing that I don’t experience a relapse or any other fun health issues.  

Thank you for reading!!  



My replies:

1)   Thank you!  But I now look like a hippo.  I looked much better with color to my cheeks, no bags under my eyes, and no mysterious bruises or rashes.  (Or I should just hand them a pic of me at my wedding and say “this is what I REALLY look like”…oh and I got married 8 months ago).

2)  Does everyone have to do a countdown prior to heaving themselves out of bed every morning?  I think not.

3)  Yes.  And there are starving children in Africa.  Your point is?

4)  I wish.  Why don’t you snap out of being an a-hole.

5)  Maintaining my sight and staying out of the hospital  is a full-time job.  And since I no longer have health insurance, me staying out of the hospital is saving YOU money.

6)  No you don’t.  There isn’t anything to watch on TV (pretty much anytime of day), there are only so many websites you can visit, and there are only so many positions your body can tolerate for a given period of time.  Eating in  bed also has its drawbacks.

7)  I wish.  If I go out in public, I risk getting sick.  If I sit in the sun for longer than 5 minutes, I risk some serious sunburn.  If I do the wrong type of exercise, I run the risk of breaking a bone or snapping a tendon.  If I walk further than I anticipated, I risk not making it back.  Again, keeping me OUT of the hospital is saving YOU money.

8)  That’s great.  And do they walk on water?

9)  Right.  If you had pain like this, you would be in the ER.

10)  I’m a nurse.  Your point is invalid.

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.

Good news!

© Dawnbal1 | Stock Free Images & Dreamstime Stock Photos

© Dawnbal1 | Stock Free Images & Dreamstime Stock Photos

Wow.  This week has been pretty awesome.  Taking the new med before I take  methotrexate is definitely helping things.  Leucovorin is a type of folic acid that counteracts the damage caused by the chemo.  I am thrilled that the doc put me on this one.  If I have to take cell destroying chemo to save my sight, at least the side effects can be minimized.

I worked out three times this week.  30 minutes of cardio, 20 minutes of stretching (sometimes twice a day), and some strength training for my arms.  Although I really pushed it yesterday and my arms are sore, its a “good” sore.

I have been logging my food via a health tracking app all week.  I’m doing reasonably well.  I have been eating more fruits and vegetables (even though I HATE vegetables), and I haven’t been snacking too much.  And I’m basically only drinking water at this point.

Yes, I am still having methotrexate side effects, mainly the “leaded limbs” and fatigue.  It is still difficult for me to change position, and the muscle soreness doesn’t help.  But overall I feel about 50% better than last week.  And about 100% better than the week before.

I will call that progress.

I’m actually looking at going back to work.  Not my former position, that job was hard enough when I was healthy.  It also has a high rate of burnout.  But I found a company that does biometric screenings for corporations.  I can pick and choose how and when I work.  I am not obligated to fill a certain number of hours.  This seems like an ideal place to start my reemergence into the health care field.

And Sunshine is doing better.  Right now, she is entertaining one of her friends by telling her jokes.  I love the sound of Sunshine’s laughter.  She has befriended a painfully shy little girl in our apartment complex.  I didn’t know until today that this child could speak, and she has been over to my house a number of times.  It makes me so happy to see Sunshine being a good friend.

The situation with her sperm donor hasn’t improved, and I have talked to her school counselor.  They actually have a “support group” in her school for children of divorce.  It is sad that it is even needed for children so young.

I also made an appointment for Sunshine to see a child psychologist.  I have no idea what she is going through, and even though I have my own issues with her “father”, I have can’t imagine her feelings about this situation.  I just do the best I can.  I tell her that she is loved and that it is not her fault.  She seems to understand that.

Overall, I’m doing well at this point in time.  Finally.


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.


Some room to breathe…


Good news!! The short term disability claim through my former employer was finally approved.  It only took nearly six months, but after faxing pages and pages of my medical records, they finally approved it.

So we can breathe a little bit easier with regards to finances.  Not that I’ll be able to go and buy a new car or something, but rent is at least covered for the next few months.

And I spent the day applying for jobs.  It is so hard to read job descriptions and try to imagine myself doing that job with my reduced functioning.  I don’t know when I’ll have a “good day” or a “bad day”.  I know that I can only work the last few days before my methotrexate dosage.  Wednesdays, Thursdays and Fridays mostly.  And I have no clue how certain jobs would affect my fatigue.

I haven’t been able to work as a bedside nurse since my brush (read nine months of hell) with c.diff seven years ago.  Two different infectious disease docs told me to stay the hell out of the hospital due to increased chances of me contracting another lovely hospital acquired infection while working.

Although nursing is a very dynamic field, I am having difficulty finding the ideal position to fit my current health needs.  I have difficulty articulating the ideas I am trying to get across at times.  I forget medical terms, I stutter occasionally while my brain is sifting through the info.  I don’t want to present as unintelligent or lazy.  I just have a longer time synthesizing info, no matter what it is.  Sometimes I have to ask people to repeat themselves.  Slowly.  I have to write down everything.  And forget about spelling.

But overall, today was a good day.

Anyone need a nurse?

Let the job hunt begin.

I recently resigned my position as a RN case manager for a wonderful hospice company here in Austin.  It literally broke my heart to resign.  I truly loved my job, the people, the support offered.  I miss my patients.  But, physically, I cannot perform to their expectations.  I cannot drive 100+ miles per day and handle a caseload of 14+ patients in a rural/economically depressed area.

So I am now looking for the perfect job (if it exists) that has enough flexibility to allow me to continue my medical treatment (chemo).

I am being honest with employers.  I have some limitations, mostly physical.  It wouldn’t be fair to apply for a job that I know I can’t perform.

I’m concentrating on work-from-home jobs.  Nurse triage specifically.  I have no experience with insurance, although I’m willing to learn.

I have been a nurse for nearly 10 years, in many many many different areas of expertise.  If anyone has any ideas please let me know.  If anyone has experience executing a job search while chronically ill, I’m interested in your input as well.

I need to generate some sort of income or we will be evicted.  Its that bad.

Thank you!

So far, so good..

A week into the new year and I’m doing ok.

Methotrexate hit much harder than usual this past weekend.  Much more nausea and the sensation that my limbs are full of lead.  Basically spent the weekend in bed, which is what usually happens.

Today I drank more water and actually took a 10 minute walk.  I sat outside for awhile and watched Sunshine play with her friends.  She is growing up so fast.  Halfway through kindergarten.

Migraines– I voluntarily stopped some of my meds due to cost.  One of them was to help with my migraines (topamax).  I have been on that medication and Lyrica since 2007.  About two weeks now without them and I think I need to go back on the topamax.  I have had a migraine 4 out of the last 7 days.  But when I refilled the prescription, I found out the hard way that it wasn’t on the list of “approved generics” at the local store.  So instead of paying $5, like I thought I would, it came out to $220.  And now I don’t have it.  I know not to even try Lyrica.  Last time I tried paying cash it was something like $8 per pill.

So I am now going to start looking at those pharmaceutical prescription help sites.  Its clear that I do have a need to be on some of these meds.

I am also getting help from a family friend to organize my medical records.  She is a legal nurse and has volunteered to help me with disability, finding free meds, etc.  It is pretty clear right now that I cannot return to my former employment.  I’m looking at other ways to make myself marketable, but one of the big issues with me is the fog that the meds cause.  And its unpredictable.  Nurses need to be on task, be able to make judgement calls.  And sometimes I can’t.  Sometimes I’m functioning just fine, but if I get to overwhelmed or too tired, I just can’t think.  Even looking at job descriptions the other day completely threw me through a loop.  I just couldn’t concentrate.

So getting help in this maze of health issues is so wonderful.  And even though I am a nurse and the product of two nurses, I still don’t know what I’m doing in terms of applying for benefits and presenting a medical case to the government.

I have also found a website that is completely dedicated to the actual problem I have.  I still don’t have a definitive diagnosis of sarcoid.  But at the last eye appointment, the doc mentioned the words “pars planitis” in addition to the usual terms of “uveitis”.  So I plugged them into the old search engine and I find a website specifically for pars planitis (www.parsplanitis.org).

Its rare.  I found it through the “rare diseases” database.  So rare the the group on Facebook for this condition only has 38 members.

Finding the website made me feel so much better.  I even wrote to the expert doc on the site and he wrote back.  Although the information wasn’t hopeful at all, it was a step in the right direction.  That doc says that I should do anything I can to get health insurance and that my case sounds very aggressive and that I am running the risk of permanent vision loss.  Fantastic.

But it did help to read the tons of information.  It helped to understand the condition better.  I have been addressing this in the wrong manner.  I have been looking for systemic reasons for why this is happening.  Per the info I have, it  can be idiopathic.  So I am switching my thinking around to focus on just my eyes.

It was also helpful to read that my docs aren’t completely off their rocker in prescribing treatment.  What I am doing is inline with what this website says is the proper treatment.  Again, as  nurse, I don’t 100% believe in everything the docs say.  Even with my eye doc, who is fantastic, I still have the tendency to be less trusting because of my 10 years of working with doctors.

So this year is going ok so far.  I still take it one day at a time, one night at a time.  That’s all I can do.