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.


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.

So I was right..

Yes, my eyes are a little bit worse.  I was right with my earlier instincts.

Saw the eye doctor, he did another steroid injection directly into my left eye.  This one was different ..he put it in a different location than the two injections prior.

This one required him to use that dreaded clamp to keep my eye open, wipe down the surface of my eye with betadine, and inject twice as much steroid as he did last time.

My right eye, which was previously clear of inflammation in January, is now inflamed.  It may need an injection to that eye in two weeks.

No matter how much numbing drops he put in, it HURT.  I mean, took my breath away hurt.  And since he put it in another location, not the back of my eye, I was looking directly at the needle as it was coming toward my eye.

So now my eyeball is bleeding.  Which is expected (I freaked out the first time it happened).  The blood is surrounding my iris, and I can see a shadow at the top of my vision.Image

To add to the fun, I did my weekly methotrexate dose on Friday.  I felt like hell all day Friday and Saturday.

My husband even took Sunshine with him to his boxing class this past weekend.

Yesterday I felt ok.  I HAD to get up and help my husband with the laundry and the house.  I made cookies, I made dinner.

And now, I am completely wiped out.  I slept 16 hours so far.  I woke up, got Sunshine on the bus, then back to bed.

I am up now because Sunshine is getting off the bus in 20 minutes.  And my husband will be at work until 8:30 tonight.

I am incredibly thankful that it is beautiful outside today.  Sunshine should be out with her friends most of the evening.  And one of my friends is coming over for “Mommy-baby dinner” tonight.

She can help with dinner and keep an eye on Sunshine until my husband gets home.

I really can’t tolerate reading or typing too much.  So I’m going to end this here.  I’m just concerned. My bp is still going haywire, this eye is effed up, and I can barely move.

My goal this week is to get to yoga at least once.


This is the flu that doesn’t end..



This is the flu that doesn’t end,
Yes it goes on and on my friend!
Somebody infected me, not knowing what it was,
And it is lingering forever just because,
This is the flu that doesn’t end…

Sorry for putting that song in your head (for those of you who know what its from). This is the longest I’ve felt ill with a cold/flu in a number of years (well, since the H1N1 debacle of 2009).

I felt better yesterday, and possibly did too much, so maybe that is why I feel like hell today.

I can breathe, which is always a plus, but I feel so sluggish and sleepy. And I stopped the NyQuil two days ago.

I took a three hour nap in the middle of the day. I haven’t done that in least a month or so.

And there is still a lot of pressure in my head, judging from the constant ear popping.

I am also experiencing a sore throat today, which is rare for me since I had my tonsils ripped from my skull 10 years ago.

I already feel sick 24/7 as it is.  I despise feeling “extra sick”.

I’m also pissed that I was doing so well with the exercise almost everyday for two weeks.  This illness has stopped that momentum dead it its tracks.

I have the desire to do yoga.  I have done some stretching in the last week, but I haven’t gone to yoga class or done a structured yoga video since Feb. 15.

The good thing is that I got to skip my weekly dose of poison due to the immune system implications.  WOO HOO!!

So, hopefully I feel better for the rest of the week and I can get back on that exercise plan.

Oh and my “healthy” eating took a break too.  I wasn’t actually eating ANYTHING so I put the diet on hold.  I have been eating oranges everyday (some times more than once a day) because I know the vitamin C helps.  The added folic acid can also help as well.

I am still drinking mostly water, but I have slipped in terms of sweets (I felt well enough to make my famous peanut butter chocolate chip cookies yesterday).

I hate these carb cravings and I’m actually counting down the days to my next eye appointment.  With the increased dosage of methotrexate (15 mg given SC q week), the docs are hoping that the inflammation in my eyes (and hopefully the increased pressure) will decrease.  If that happens, I might be able to taper off of the steroids completely.

Even though I’m putting in the effort, I feel that I may not see any kind of results with the weight until I am completely off that medication.  My fingers are so puffy I can no longer wear my wedding rings 😦

I’ll continue trying.  That’s about all I can do…right?


© Solitaire | Stock Free Images & Dreamstime Stock Photos

© Solitaire | Stock Free Images & Dreamstime Stock Photos

After the rounds of doctors appointments this month, the unanimous verdict is that I’m stalled, if not a little worse.

The inflammation in my left eye isn’t budging, and now the doc sees “old inflammation” in my right eye.  Oh, and the pressure within the left eye is rising.  Fantastic.

The rheumatologist appointment wasn’t much better.  My blood work was slightly raised for inflammation markers.  Only slightly, but they were perfect in November.

The docs are going to put their heads together and decide if I need to go up on the steroids or do something else.

I did talk with the eye doc about the information I have been finding online regarding pars planitis and uveitis.  He knew who the doc that heads the eye clinic in Boston was and seemed to be pretty pleased that I was looking into it.  I made need laser surgery in my eyes if the inflammation does not improve.  Maybe they can throw in LASIK since they are going to be pointing a laser beam into my eye anyway (that is a joke, I’m not a candidate for LASIK.  I asked about it previously and the doc gave me this funny look and said “don’t make this too complicated than it already is).

So I did get new meds this week, a superdose of folic acid to hopefully offset the side effects of the methotrexate, and eye drops to hopefully lower the pressure in the left eye.

I still have the lovely rash, and though it is not as itchy, it is still present.  Rheumatologist states that this is probably related to the steroids (yippee), but if it doesn’t go away after a week of using hydrocortisone cream (fight steroid with more steroid), then I’ll more than likely have to see the dermatologist.  Let’s just add another doc to the mix.

My husband discussed with my eye doc at length about the memory and brain fog issues I’ve been having.  This scares me to death.  I used to be so “on” and organized.  That is what made me such a good hospice nurse.  I could logically prioritize what needed done and when without much effort.  Now, it is a nightmare.  I can’t logically sequence anything anymore.  My husband said my brain used to be “automatic, like a computer”, now I’m not sure if I could win “Are you Smarter than a 5th grader?”  Several times a day I have to remind myself what needs done and in what order.  I practically have to write it down and follow a list.  I have no memory for numbers and names like I used to.  I actually have to make a concerted effort to remember anything.  Even my husband’s phone number.

The doc doesn’t think its related to the actual disease process, but more of a product of stress caused by the disease process.  His suggestion?  Yoga, exercise, relaxation.

I know I need to get moving.  I’m now 40lb overweight and what scared me even more is that I had a spot accucheck done yesterday, 4 hours after my last meal.  It was elevated.  Only slightly, but I usually run right on target (80s).  The glucometer test wasn’t enough to indicate diabetes, but it was enough to have it monitored.

I am terrified of diabetes.  My family has a horrible history with it.  My great-uncle lost both legs as well as a great-aunt (one leg).  My grandpa had diabetes.  So far my dad doesn’t have it, and no one in my generation of the family has it, but I think my shot at getting it (ha ha…shot) is something like 30%.  I need to watch it.  I need to watch my intake and I need to exercise.

But it is so hard.  Carb cravings kill me.  I’m worried that they will up my steroid dose and then the cravings will be more intense.  My husband says “well, just don’t eat it”.  Its not that simple.  I mean, these cravings are intense.  I want cookies, bread, juice.  And Sunshine is selling girl scout cookies, so now I have two cases of delicious cookies tempting me in my living room.

I have never, ever been like this.  No one would ever have mistaken me for a super model, but I was pretty much on par as far as BMI goes.  This “fat” thing horrifies me.  I know I look like a hippo.  Hell, I feel like a hippo.  And I hate the body changes internally, not just externally.  I have increased incidences of gastric reflux, and my systolic blood pressure was 20 points higher than normal yesterday.

It really does suck when you “know too much”.

But, looking at the bright side, I am drinking more water.  I only do the ginger ale thing when I’m nauseous (which is about three times a week right now).  But I am doing better in that department.

I am going to try again tomorrow to get some exercise.  I am completely exhausted from running around all day today.

Tomorrow is a new day with this reality.

Under the lead blanket

© Nashekrashe | Stock Free Images & Dreamstime Stock Photos

© Nashekrashe | Stock Free Images & Dreamstime Stock Photos

The meds are hitting hard today. I’m not sure if it is because I’m taking a detox bath every week to help me feel better, but it is really sucking today.

Friday night is when I give myself a shot of methotrexate. I’m only on 10mg, but for some reason I am very drug sensitive to it.

As soon as I inject it, usually into my thighs because of the lovely rash currently encircling my abdomen, I start to feel a heaviness travel down my leg. It’s quick and soon envelopes my entire body. And for the next 24-48 hours I am a walking zombie. I frequently need my husband’s assistance in getting to the bathroom, into bed, etc.

I also experience nausea and sometimes experience dry heaves. Lovely.

Usually the next morning I feel slightly better. But today, it took an effort to even breathe. I almost fell a few times attempting to do things for myself. I hate being helpless as this fog envelopes my mind and my body.

Major effort to even type.

But, this medication is the only one that has stopped the inflammation so far. And not completely, I might add. And I have taken it since August, so this is as good as its gonna get.

I guess I’m not completely to the “acceptance” phase. With the fibro diagnosis 7 years ago, it was more secondary because I was also fighting a deadly infection. I went right from recovering from that infection to being pregnant (which was wonderful for my fibro, and I’m not being sarcastic. I felt fantastic when I was pregnant). And then from being pregnant, to practically being a single mother (despite the fact that I was married to her father). It was easier to accept the fibro because I was so busy caring for another person.

I (obviously) still care for her, but she is potty trained, can feed herself, and sleeps through the night. And most of the week she’s at school. And I have tremendous help from her bonus daddy (real daddy decided to cut her out of his life six months ago).

So I guess that I haven’t fully accepted that, in order to retain my sight, I have to take these meds. I have more time to think about it.

With the fibro it was more of a fatigue/pain thing. I was constantly tired, but I had another little tiny person to take care of. Now I have more time to dwell on what is going on. I’m bored. I can’t work (in the traditional sense).

With this med…it changes so much. I have gained weight, I can rarely exercise (on very good days I can take a 10 minute walk to the mailbox and back).

I’ll feel better by Monday. Hopefully. I’ll be able to participate in the household. But right now, I really can’t do anything but lay down and read.


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.

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.

New Years Resolutions when your health is in the toilet

I don’t do New Year resolutions.  I have never done them, I think they only set people up for failure.  And when you have a lovely, uncertain, chronic health condition such as I, the typical resolutions of “lose 15 lbs by Valentine’s Day” are probably unrealistic.

So I’ll just write some broad, long-term goals.  I have actually been starting to do a few of these in the past few weeks, but an arbitrary date, such as the New Year, is a good time to write them down.  Here goes:

1)  Keep better track of my health.  Right now I’m sort of “winging it”.  I haven’t been keeping track of what meds I take when. I’ve actually weaned myself off of some of my meds in a haphazard fashion due to cost issues.  I should have kept better track of that.  And I need to organize my health information and records in a more coherent way (other than the messy pile they are currently in).

2)  I want to look into more holistic health options.  I was seeing a naturopath when I started getting sicker.  Since I have had lack of funds, I have stopped all my herbals and vitamins.  But I know there are cheaper and better ways to care for my body other than traditional western medicine.  I just need to find the right balance between western medicine and complementary medicine.

3) Eat healthier. I won’t put “lose weight” as a goal, because I know that taking long term steroids seriously puts that goal in jeopardy.  But “eating healthy” means getting more fruits and vegetables and drinking more water.  I can do that.

4) More movement.  Again, I won’t set out a goal to do a set number of exercise each day.  But with a goal of “more movement” I can feel satisfied if I stretch once a day, if I took a 10 minute walk.

5) Better sleep hygiene.  Since I stopped taking some of my meds due to cost, namely my Lyrica (which I had been on for years), I have been having more issues sleeping.  Some nights during the past few weeks I have had 2-3 hours of sleep at the most.  That is unacceptable and it has to get better.  I know what to do, I just have to do it.  Set bedtime, set a routine, take something if I need to BEFORE midnight.  I know that I can do this if I set my mind to it.

6) Look into every available option of insurance, funds, and help for my condition.  I know help is out there.  I have to find it.

So that’s it.  I hope to be working on this and blogging around these issues.  It is evident that I’m stuck with this crap for the long term.  I have to find a better way to live than popping my meds and laying on the couch.

In in for the long haul…

Today is the last day that I have health insurance.  So I am stocking up on the medications I currently have refills on and I followed up with the doc for the second opinion.

My bloodwork held no surprises.  ANA is still negative, so is all bloodwork looking for lupus.  Only a little bit of abnormalities in my complete blood count (lymphocytes) and with my c-reactive protein and a normal high of my sed rate.

This doc talked to my eye doc and I think to my current rheumatologist.  And I trust this doc, he is probably the best in this field in the area.

The verdict?  I definitely have an autoimmune disease that is attacking my eyes and is acting systemically throughout my body.  The methotrexate is working, (the doc said it saved my sight) as evidenced by my eye doctors peek in my eye and by the lab values.  I still have active disease in my left eye, so the second opinion doc is recommending anti-TNF therapy (I’ll get to that in a minute).  Despite the extensive lab work, no one can say whether it is definitely sarcoid or something else.  There is just no evidence either to rule it out or to solidify the diagnosis.  No one knows why I have increasing joint pain throughout my body.  It could be the disease itself, or the steroids that I have been on for six months weakening my bones.  The second opinion doc also said that I may have this going on for a very long time.  I may be on treatment for many years.  I may never come off of treatment.

His suggestion was to add anti-TNF therapy: Humira.  It is usually a rheumatoid arthritis drug.  It is extremely expensive.  I no longer have insurance after midnight tonight.  Funny, huh? Like $1,900/month expensive.  He also said that the programs that exist for people without insurance will most likely not pay for an “off label” use such as my condition, uveitis/presumed occular sarcoidosis.  Now is the time when I start cussing.  Fan-fucking-tastic.  I can’t afford food, let alone this type of medication.  He is suggesting the Humira to completely stop the inflammation in my eyes and completely stabilize me.

As for returning to a job?  No suggestions there.  He agreed and acknowledged my concerns regarding not just functioning as a hospice nurse, but a nurse in general.  I can’t make judgement calls about my own health, let alone someone else’s.  I can’t guarantee an employer (my current one or a prospective one) that I can be healthy for a set amount of time during any given week.

Let’s take yesterday, for example.  Thursdays are usually good days for me.  The side effects of the methotrexate are usually flushing out of my body.  I can usually tolerate housework, maybe a short run to the grocery store.  Yesterday around 2:30 pm I was hit with a wave of severe pain to all the joints from my left shoulder to my left fingers as well as my left hip.  I’m talking teeth gritting pain.  Being that my husband works second shift, I could not take any medications that would make me drowsy because of my responsibility to take care of Sunshine.  However, she was going to a birthday party for a neighbor (in the middle of the week? yes, I know, thank God for small favors) and she wasn’t due to return til early evening.  So I took a dose of tramadol, I did take a 2 hour nap, and the pain was knocked down from a 9/10 to a 3/10.  I was awake by the time Sunshine came home, and we had “Mama/baby time” where we snuggle in “Mama’s bed” and watch movies.

I was not anticipating that kind of pain.  I do not know where it came from.  I did nothing that could have triggered it.  No excessive typing, I didn’t sleep on it the wrong way, but I usually sleep on my left side.  I didn’t bang it off the wall, which I am prone to do.  Nada.  Just intense pain from my fingers through my shoulders and in my  hip.  Throbbing pain.  For hours.

I can’t promise my time to anyone.  I had to cancel dinner this week with my mom.  I can’t do that with an employer.

I wish I could read books and blog for a living.  Or a health coach.  I could do that.  Set my own schedule. Help people that need direction with health and wellness. Because I have been through this maze, on both sides, it can be scary. 

Positive:  I don’t have anything worse than what I already knew.  And that is stabilizing with the treatment I am currently receiving.

I am going to a baby shower tomorrow.  Nothing like celebrating new life.  I’ll post pics of the decorations I made.  Yes, that could have triggered the pain, but I am right handed, and my right side is fine.  I think the left side of my body just hates me 🙂