U: Update

 

I went to the eye doctor’s two days ago.  And finally.  Some sustained good news.

Despite some scarring, my eyes are the best that they have been since diagnosis.

It is hard for me to believe that.  For nearly two years it was one calamity after another.  So it is hard to let my guard down.

But I am off steroids.  I am off methotrexate (for nearly a year now).  I will always have lingering side effects from those two drugs.  I will always have scarring in my eyes, I will always have vision problems.

Mainly I see “floaters”.  I also have difficulty transitioning from darkness to bright light.  It seriously takes me awhile to adjust.

I have nausea and stomach issues from the steroid and methotrexate combo.

But I have my vision mainly intact.  For that I am thankful.

So just hoping to get back on my feet.

Still living with my parents, hoping to be out of here in a few months.

Work exhausts me, but I’m managing.

It has been two long years with this autoimmune shit.  I know it isn’t over.  But it is nice to be able to take a breather.

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P: Pars planitis

 

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

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

Yeah.  That shit is scary.

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

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

Great.

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

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

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

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

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

M: Medication

 

I hate the fact that I require chemicals ingested into my body on a daily basis to live a pain-free, comfortable life.  I have this fantasy (a goal, actually) that I can get off of the meds in 10 years.  That may or may not happen, but it is nice to think about.

I have been on some sort of medication every day to control either migraines, depression, fibro or autoimmune disease for nearly 20 years.  That’s a lot of medication.

My record for consecutive days without medication was 10 weeks when I was pregnant.  By the end I was so anxious, so wound up, couldn’t sleep, etc that they wanted me on something.

I hate being beholden to something like this.  The thought that my body would go completely haywire if I didn’t take my meds.  I have tried, unsuccessfully, plenty of times to wean off, but it is usually ends in disaster.

I’m not going to go into details on what I currently take or what I have taken, but I will say that Lyrica does work for me.  I have been on it for 6 years and after I got over the initial 6 weeks of adjustment hell, it is well worth it.  It was like I woke up one morning and the pain was turned down.  It is not like I don’t have fibro pain, I do, but I am able to function better with it.

I was on methotrexate for almost a year.  That was a horrific year.  I blogged about it plenty in this forum.  Yes, it was a low dose chemo.  But I am so damn drug sensitive that it completely depleted me.  I felt like the tin man.  I could feel it seeping into my cells.  It was awful, and I will do anything to stay off of that med and off of steroids.

I absolutely refuse to take the heavy hitting narcotics for my pain.  When I was first diagnosed with fibro in 2005, all I knew about it was the few patients I had in the ICU with it and their uncontrollable pain.  These poor ladies would come in and have med lists as long as my arm.  They would be in a flare and they were so drug tolerant that nothing would touch them.  I was terrified when I was diagnosed, and I decided that I would never look to opioid narcotics for daily pain relief.

I do have a script for tramadol that I use very, very sparingly.  Probably less than twice a week.  But I refuse to ask for a script for hydrocodone, percocet, etc.  I feel that those sorts of meds are best for acute pain, not chronic pain.

I have nothing against people who do use those meds, but I do feel that there are better ways to manage chronic pain, and that chronic pain is woefully treated in this country.  I do feel that chronic pain can be treated better if certain substances were taken off of the schedule I list.  I also feel that other non-pharmaceutical treatments can be used for pain, and I do use them myself.

Just because there is a pill for that, doesn’t mean we have to take it….

H: Help (!)

H

 

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

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

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

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

Welcome back to the land of the living

One thing I love about Austin is the plethora of street festivals.

Ever since I have lived here, I have tried to make it to at least one or two per year.

Last year, I made it to one, right before my diagnosis.  I was unable to do the things I wanted to do, i.e. the fall festivals and Halloween, because I was too sick.

So I was extremely excited to be well enough to go to the Pecan Street Festival this year.

I gathered Sunshine and some girlfriends (and one of their reluctant husbands) and we set out to have some fun.

Sunshine got to ride a pony and pet a baby zebra, Mama got some much needed girl time with her besties, and we all got to experience the wonderful eclectic mix of people that is Austin.

When I told my mom what my plans were, she was so excited.

She said “welcome back to the land of the living”.  And I am very happy to be here.

I have done more exercise, participated in more activities in the past two weeks than I have in the prior year.

Methotrexate, not working, and massive doses of steroids really do take their toll.

In addition to working, I have started hanging out with my girls again.  Which is much needed.  Before, I couldn’t tolerate getting out of bed, getting ready, and going somewhere.  Never mind that through the worst of the floaters and issues with cataracts, that I didn’t feel safe driving.  So that seriously curbed my social life.  But my friends were awesome, accommodating me when needed, one even cleaning my house when she came to babysit (she even cleaned my microwave!!).  So its wonderful to be able to return some of their hospitality.

Just hoping that this continues.  That I’m able to stay off the meds and continue getting healthy.

I am already thinking of fun costumes for Halloween…

Who needs a kidney? Or a liver?

The severe pain shuddering throughout my left back and abdomen might be a kidney stone.

My liver enzymes are highly elevated.

And I’m going out of town next week.

Shit.

Ok.  I finally made it to the primary care doctor’s office last Friday.  She thinks the pain in my left mid/lower back could be a kidney stone, based on the pain location and the fact that I have microscopic blood in my urine.  She wanted to do a sonogram right then and there, but since I have NO INSURANCE, there is no way I can afford it.  At all.

She gave me muscle relaxers to see if it was fibro pain.  

It helped, somewhat, but the pain is still present, just not as sharp.

I’m currently waiting on her call back with the next step.

I have my liver enzymes check every few months due to the methotrexate.  Last month they were slightly elevated.  This month they are VERY elevated.

I’m not turning yellow or anything, but it is concerning.  The doc told me to hold the methotrexate this week and try to get in to see her ASAP.

Well, the next available appointment is June 19.  

Waiting on that call back to find out what I should do and if I should even travel next week.

Good news?  The pressures are down in both eyes.  Being compliant with painful eye drops definitely improves the situation.

 

Pay the toll…you had fun…

Deep Eddy Pool in Austin, Texas

Deep Eddy Pool in Austin, Texas

I hate how both of these illnesses require payment when I do something other than sleep all day.

I am feeling pretty crappy today after actually getting out of the house and doing something other than going to a doctor’s appointment or to the grocery store.

I went with my family, my cousin, his girlfriend and their friends to a freshwater pool here in Texas.   I love going to these places around the city because they are so unique.

Deep Eddy pool used to be a swimming hole in the Colorado River.  After some storm damage, it was decided that they would make an actual pool.  They fill up the pool (in alternating sections) with fresh well water every other day.

The water is COLD!!  A bit warmer than Barton Springs (which is spring fed and always at 68 degrees, even in 100 degree weather).  But still freezing nonetheless.  Feels amazing on a day in the high 90s.

To get to the pool, there is a huge, steep set of concrete stairs.  That is probably what is contributing to my current situation.

And just being out in the sun and heat seems to sap my energy faster than anything.  We were there for a little over three hours.  And it was getting iffy for me as to whether or not I could make it up the stairs to head back to the car.

By the time I got home, I was feeling it.  I didn’t burn, thank you 70 SPF, but my back, legs and head were killing me.

And I had to do the methotrexate last night, because I’m volunteering for a little while at one of Sunshine’s school events tomorrow and I didn’t want to be a zombie.

So today sucked.  Horribly.  Sunshine woke up, true to her name, at 6 a.m.  I managed to get her to lay down with me while we listened to meditation music until 730.

I tried getting her fed and set up for the morning, but I was having difficulty walking and almost fell several times.  So my husband got up with her this morning and I went to bed.

But he had to go to work for a few hours around midday.  He came in and woke me up before he left.  I couldn’t give Sunshine the attention she wanted today, and she wanted to go to the pool again.  So my mom picked her up and took her to the pool in her neighborhood.

And I went back to bed.  Noticing a trend here?

I finally woke up at 530 pm to put dinner in the oven.  And I have been awake ever since.

My hockey team is on TV, they are in the Eastern Semifinals and I wanted to watch it on the big screen.  Or else I would be back in bed.

So as soon as this game is over, I am running a warm bath and then heading back to bed.

The pain hasn’t been managed too well with the tramodol today.  That is slightly scary for me.  I need to combine it with Tylenol more often to get the antiinflammatory benefits.  But with the elevated liver enzymes last month, I’m sparingly using all NSAIDS right now.  Not that I can take anything other than Tylenol anyway, thank you G.I. tract.

My hands and my left knee are throbbing, in addition to my left hip/lower back.  I’m not sure why I am having this pain, but I don’t like it.

I get blood drawn this week.  Hopefully the levels look better.  C-reactive protein was higher last month than the last test.

Positive thoughts?  I have been eating healthier.  We grow our own herbs, and with using oregano, basil and parsley I have been able to stop adding salt to my meat.  I really haven’t fried anything in over a week.  I’m eating more fruits and vegetables.  I made a huge pot of greens yesterday, but I’m a novice at the flavoring, so they were really, really bitter.  I was able to eat the carrots I put in the pot though.  Only slightly bitter.

It’s amazing that the human body craves what it needs.  For years I hated carrots, peppers, salads, etc.  My parents weren’t very forceful with the veggies when I was younger.  But I have noticed since I had the diagnosis of the autoimmune disease that my opposition to these foods is almost non-existent.

I have heard that your taste buds “mature” as you get older, but I think it is more of my body needing things and then craving that substance.  Interesting.

Cooking is what is keeping me feeling at least somewhat useful around here.  I have been making my husband wonderful dinners for the past few weeks.  I have been trying out new spices and cooking techniques.  Not bad for someone who was literally clueless at cooking a few years ago.

Can’t type much more, the fibro pain is also making itself known today as well.  Just lightly touching areas of my body is causing searing pain.  Example:  I went to scratch my arm a second ago.  I didn’t scratch hard, just enough to get rid of the itch.  The area where I scratched is now throbbing.  Fantastic.

I’m glad I got out yesterday.  Makes me feel like I am still a part of the human race.  I just hope next time the toll isn’t so high.

 

Chronic illness doesn’t go on vacation

I am 4 days from the beach…

Ahhhh….I can’t wait.

I’m am incredibly fortunate that my mom has invited me and Sunshine to a “Mother’s-Daughter’s Weekend” to the beach with her friend and friend’s daughter.

The beach has always been restorative for me. I don’t know what it is, I wasn’t born near the beach, but for as long as I can remember, that has been my preferred vacation spot.

Living in Pittsburgh, the city on the wrong side of the state for an ocean, my family would trek to the Jersey shore, Virginia Beach or Myrtle Beach (that’s in South Carolina). More of the latter rather than the former….and a full 12 hour car ride away.

Now living in Texas, the beach is 4-5 hours away. It is entirely possible to leave on a Friday night, find a hotel on the fly, and then drive back on Sunday. Not so when I was growing up.

But this time we are trying something new…Florida.

My only concern is of course, my health.

I have been able to stagger the methotrexate doses so that I won’t be injecting while on vacation, but in my poor planning (as in I just looked yesterday) I don’t have enough Lyrica. And due to the prohibitive cost, I am in the Pfizer patient assistance program. Not sure if it will be here by Wednesday. So I’m rationing the pills, going to reorder and have it delivered for while I’m gone.

I’m also concerned about medication side effects. Apparently, methotrexate increases sun sensitivity. I went to an event at Sunshine’s school two weeks ago and got burned. And I never burn. I’m Latina.

It didn’t look like a “real” burn either. More like scalded skin. It only hurt a little, and it faded in two days, but this was Texas sun in April, nor Florida sun in May.

I am bringing a TON of sunscreen, my mom is letting me borrow a hat, and I will be under an umbrella at the beach.

I’m also concerned about the drive. I’m not driving (my driving is now pretty much nonexistent these days) but I will be in the car for 8 hours. I also get horrible motion sickness, so I can’t read in the car and I’m hoping I can download some audiobooks in the next few days.

Traveling with chronic illness is like travelling with a baby.

I have to remember to pack every single medication I take daily, every medication for associated symptoms that I could possibly encounter, comfort items, etc. In addition to packing for Sunshine…

Other than that, I’m pretty excited. Looking forward to relaxation, the ocean, getting out of the house.

Next on the travel list? I will be going (going) back (back) to Pittsburgh (to Pittsburgh)…

Achoo!!

© Dinna79 | Dreamstime Stock Photos & Stock Free Images

© Dinna79 | Dreamstime Stock Photos & Stock Free Images

This really sucks. I still haven’t 100% recovered from the flu from hell, and now I have a cold that wants to live in my body forever.

Saturday morning when I had a sore throat I could feel it coming on.  But I still took Sunshine rock climbing (with her Girl Scout troop, I didn’t participate) and then went to a rally downtown that I was writing a story for.

Then I had dinner with my parents and their friends.  I came home that night feeling horrible but I had already taken my Leucovorin dosage and HAD to follow with the methotrexate later in the evening.

I haven’t been out of bed much since.  Yesterday I couldn’t even look at the computer.  Today I’m having limited success.

I still managed to finish my story and make dinner today, so the day isn’t a total loss.

Sunshine has been misbehaving lately, and her latest stunt earned her a weeks grounding to the house.  Having to explain to her time and time again that her behavior isn’t acceptable and her actions lead to consequences isn’t helping.

Any kind of viruses lately take a higher toll on my body.  They also last wretchedly longer than in the past.

A year ago I could take DayQuil and go about my day.  Now I have to stay in bed.  I know its the effects of the methotrexate.  But I don’t have to like it.

I have a wonderful husband, however.  He doesn’t hesitate to get me whatever I need to feel better.  I know how fortunate I am to have him.

I’m hoping for a run of more healthy days.  If I have a few in a row, I may venture back to yoga class…

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.

Ick.