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!!

Some room to breathe…

Finally!!

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.

Euphoria

I don’t get to write many of these posts.

At this moment in time, I am pretty euphoric.

Had a fantastic day at the zoo with Sunshine, my husband and my mom.  It was a little chilly, but health wise I held up.  My plan of frequent breaks and rest stops seems to be working out.  Because of the weather, there was practically no one there.  I tend to get overwhelmed with crowds and lots of noise these days,  but we were able to stroll leisurely through the zoo with minimal difficulty.

On the way down (its about an hour and a half away), I did manage to give myself a migraine when I was trying to focus on the tiny screen of my camera to delete pictures to make room on my SD card.  But I took my medicine and the migraine (complete with nausea), subsided by the time we got there.  Score!

We had an early dinner that I actually had the appetite for (gotta love ihop) and on the way home all of the adults shared a “spirited political discussion” on the state of healthcare in America.  No one got upset, no one called names, voices weren’t raised.  Although I will continue to disagree with my mother’s position on access to healthcare, we were civil.

The main issue is that she feels the government has no business in healthcare.  I understand her point, but then consider my own situation:  I currently have no insurance, I have a chronic illness that could result in permanent blindness, and I have no access to a potential cure because I cannot afford it.  The medication I am currently taking to keep the inflammation in my eyes from progressing is not eliminating it completely.  It has been recommended for me to start on other medication to halt this disease, but I cannot afford it.  So I am running the risk of permanent eye damage because I cannot afford the optimal medication for my condition.  Because I can’t work to afford my health insurance.  I can’t work because of said health condition.  See the dilemma?

So we basically agree to disagree.

When I got home, my final Christmas gift was in my  mailbox.  The CD containing all of my professional wedding pictures from my wedding in June.

Just looking back on that day is enough to produce euphoria.  You can see the love we have for one another pouring off the screen.  I nearly cried.  We have been through so much in our young marriage, and just seeing that one perfect day (before I ballooned by 40lbs, thank you steroids) is such a strong reminder of our love and devotion.

Awesome day.  I shall savor it.

13 is my lucky number

2013..

Thirteen is my lucky number.  I hope this is my lucky year.

Nothing can top getting married last summer.  But finding a nursing job I can do from home on a part time basis would be pretty fantastic right now.  I’m hoping I just come across someone that will pay me for my 10 years of experience in a health coach or health adviser role that I can do from home.

Leaving the house is problematic for me.  Fatigue, fog, pain.  I try and try and always the same result.  I come home and crash for hours.  I am terrified of interviewing for a new job.  I can’t keep what I am going through under wraps.  I physically LOOK ill, my face is swollen, one eyelid is drooping (probably a product of eye injections).  Sometimes I can’t concentrate to save my life, and I end up asking people to repeat themselves.  Its very difficult at times.

I at least looked at job listings today.  Enough to rule out most of them.

I do plan on trying other things health wise to clear the brain fog and fatigue.  I took a “detox” bath today.  I made my husband try it first a few days ago when he was getting rid of a cold.  Its just everyday ingredients added to a bath to make you sweat more.  He survived so I gave it a whirl today.  It wasn’t as I expected, my husband sweated way more than I did.  But just being in warm water helps with the pain.  I feel a little more fatigued, but it said that could be expected.  We will see how I feel tomorrow.

Next step?  Try to get back on some herbals.  I know that inflammation is my enemy, and I plan on looking into things that are proven to decrease inflammation.

So two days into the New Year and I haven’t miserably failed with my “goals”.  Yay!

I’ll take the small victories.