More questions than answers..

Saw the eye doc today.

Good news?  Inflammation is under control.

Bad news?  The other things he noticed (namely the inflammation of my lacrimnal duct in BOTH eyes) may strongly point to sarcoidosis as being the definitive diagnosis.  Or it could be a completely NEW diagnosis.  Oh and the cataract in my left eye (as a result of the steroid injections) is significant enough to warrant surgery.  Probably in the next year.  Oh and the meds he prescribed for the stabbing pain in my eyes caused by the lacrimnal duct inflammation is $150.

So, again, I am frustrated.  I still don’t have a definitive diagnosis.  He uses the terms “pars planitis” and “ocular sarcoidosis” interchangebly.  I have not had the definitive biopsy that would once and for all settle the sarcoid question.  I’m not keen on getting a biopsy of my eyeball, my doc isn’t keen on doing one either.

But if I can get better treatment by having an ironclad diagnosis, then I’m all for it.

I’m sick of “well, it could be this” or “it could be this other thing that we haven’t mentioned yet”.  I’m sick of the roller coaster.  I just want this to be over with, but I’m realistic that I will probably be dealing with this for the rest of my life.

I feel like hell.  Have been for the past three weeks.  It is hard to tease out what is fibro and what is worsening autoimmune.  I asked the doc and he said its probably fibro.

I just don’t want to go blind.  I know that is a possibility.  As a nurse, I am also aware that doc frequently miss things or think it is one thing and it turns out to be another.

So basically I’m confused.

I know that my vision is worse.  Especially in my left eye.  It is “foggy” on the inside.  I am constantly wiping off my glasses, thinking that they are smeared.  Most of the time the fog is IN my eye.  My night vision is worse that its been since this summer.  And the sun sensitivity is still problematic.  And I now have eye pain.  That is the lacrimnal duct inflammation. It feels like a knife through the top left part of my eye.  Pleasant.

My next appointment is after the holidays.  The doc is comfortable that nothing will need to be addressed before then.  He is also going to confer with my rheumatologist to see if she feels anything needs to be examined further at this time.

Sigh.

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Sunshine plays hookey

Sunshine is now in the 1st grade.  Ever since she had her tonsils out last year, she has been fairly healthy.  I honestly don’t think she has missed a day of school since last fall for illness.

This past weekend she was complaining of feeling “hot”, stuffy nose, sore throat.

I’m a nurse so I’m the kind of mom that says “unless you are bleeding out or continually vomiting, you are going to school”.  If she complains about being sick in the morning with essentially no symptoms, I still convince her to go by saying “just give it a try, if you are too sick to learn, go and see the nurse and she will call me.”

But my mom and my husband pointed out that sometimes kids just need a break.

So when Sunshine started complaining last night of the same symptoms, feeling hot, sore throat, etc.  I checked her out (no fever, no red throat).  I’m convinced its allergies.

So this morning she looked pitiful in bed and asked to stay home.  I made it clear to her that staying home would mean she is confined to her room for the day.  No outside, no park, no playing with friends.  She said she was feeling yucky, she did have a stuffy nose, so I let her stay home.

Now she is wide awake.  She says “I’m not sick anymore!” and wants to do things.

And to top it off, my mother says “where do you think she learns to play sick?” Inferring both that I’m a horrible mother, that I’m “playing sick” and that I’m teaching my bad habits to my child.

Grrr.

So I’m angry.  I’m not feeling so hot myself (I actually DO have a red throat) and now I have to entertain a hooky playing six year old and listen to my mother’s snarky comments all day.

Sleep attack!!

I don’t have narcolepsy, but I call the extreme fatigue spells I get “sleep attacks”.

I worked my last six day week this week.

After work yesterday, I made cookies for the local domestic violence shelter (who helped me when I left Sunshine’s sperm donor) and then we had friends over.  I was in bed by 11.

I didn’t sleep well…at all.  Despite the meds.  I’m having RLS symptoms all over, not just in my legs.  I’m going to try to get to bed earlier tonight and meditate to help myself relax.  Providing that I can after watching the premier of “The Walking Dead”.

This morning, I woke up, had breakfast with the family and iced those six dozen cookies.

I made the beds (including clean duvet covers) and just lay down “for a minute”.

Despite the yelling, screaming, cursing that usually accompanies Steelers and Eagles games in this house, I was out like a light for more than four hours.

I wondered why I was left alone to sleep that long, but then my dad clued me in.  “The Steelers were winning.  You are obviously bad luck”.

So, thank you, Steelers, and Eagles, I will now be allowed to nap during the games for the rest of the season.

Flaring and a quick update

First order of business….the inflammation in my eyes is back.  Not horrible, not enough to require treatment.  But its back.

That was a little disheartening.  But we did have a conversation about future treatment, should I need it.

I have been off of steroids for nearly two months.  Off of chemo for almost five.  I do not plan on EVER going back on those meds.

Doc said if he needs to treat the new inflammation, he will do steroid injections into the eye.  Which is what I wanted to hear.

So that’s good news.

Fibromyalgia has been rearing its ugly head again.  I’m pretty sure it is weather related, as the temperature actually dipped into the 40s here.  That morning I woke up and couldn’t move.  At all.  Fuck.

It took me about 45 minutes to actually get out of bed and get moving.  I went to work.

But each day since it has been better.  Still needing some help in the morning with Sunshine, but overall much better.

I plan on resuming my workout tonight.  Hopefully I can move tomorrow.

Thank you for all the likes and follows and support.  I really appreciate it.  I know this journey isn’t over yet, but at least I’m in a better place than I was a year or even six months ago.

365 days

I started blogging a year ago today.

Wow.

Interesting year.

I’m thrilled that I have recovered to the point where I can work, even on a very part time basis.  I’m off of steroids, I’m driving.

But there is a price.  And that was my financial solvency.

We finished cleaning out our apartment yesterday.  I really liked living there.  Very bittersweet.

But, we have a room over our heads, food in our bellies.

My parents house is very quiet.  They live in the very back of an upscale housing development.  Its about a mile from any busy road.

With our apartment, it was right ON a very busy road.  So the quiet is a nice change.

My parents also have a house.  Much, much bigger than our apartment, even with 5 people, two dogs and one disgruntled cat under the roof.

And there is a backyard, and walking trails.  So in a sense it’s an upgrade, but with the trade off of living with the parents.

Healthwise, I am much better than a year ago.  My only major issue right now is pain and fatigue, mainly from fibro.

I’ve been overextending myself (again).  Yesterday after dropping off my husband at work, I came home and took a 1.5 mile walk before the sun came up.  That was really nice.  But I’m paying for it now.

My left shoulder has been KILLING me.  I woke up in the middle of the night on Thursday with searing pain stabbing into the top of my shoulder.  I broke down and took ibuprofen (which I really shouldn’t take) because I couldn’t find the Tylenol.  I iced it and had to resort to meditation to get me through it.  It was intense, probably an 8 or 9/10.  I couldn’t move my left arm.  But I finally got back to sleep, and when I woke up, it was gone.  I’m chalking it up to the mysteries of fibro.

Yesterday during my predawn walking fest, my left shin hurt on the front where the muscles attach, right below the patella and above my ankle.  I breathed through it, and was able to complete my walk.  But it was hurting so bad last night that I had to take tramadol.  Again, when I woke up, it was gone.

I tried to explain this to my husband.  He says that I will know when I go too far in my workouts because the pain of actual structural damage is pretty distinct.  But I disagree.  This mystery pain that comes and goes leads me to outright ignore it.

I generally have  a rule that if something hurts more than five days, it probably isn’t fibro.

Money wise, we are much better.  We actually went for dinner at a restaurant that doesn’t feature golden arches on Friday night with Sunshine.  She was so excited to go on a “date” with her parents.  We are contributing to the household finances, but we also get a chance to save a ton of money.

Relationship wise, it couldn’t be better.  My husband has lived up to his marriage vows and has stayed by my side through this entire ordeal.  He has stepped up and taken over the breadwinner role with working 2 jobs. I am amazed at his strength and devotion to making this work, because it isn’t easy.  It can never be easy when someone feels like hell 99% of the time.  Or when there is so much uncertainty in the future.  Or when the doctors really don’t know what to do.  He has always been my advocate, making sure I’m getting good care, making sure I’m taking care of myself, and I am eternally grateful.

Sunshine wise…she is doing fantastic, as always.  She loves her teacher, she was elected leader of her group in her classroom, she is growing a “grass head” for Girl Scouts.  Her tantrum issues have quieted down since the move, and I know she is feeling much better with the overall tension around her dissipating.  There aren’t as many younger kids around here as there were in the apartments, but the kids that are here are a much better influence on her.

Overall, I am in a much better place than one year ago.  I had just started methotrexate and was still on high dose steroids.  I didn’t know if or when my eyes would clear up.  I didn’t know if I would be able to return to work.

Now the future (the immediate future at least) is somewhat certain.  I’m going to complete this work assignment.  I’m going to see how my eyes are before I seek out more permanent employment.  I am seeing more floaters, but the doc said they might never go away.  So I’m determined to hold on until my next regularly schedule appointment at the end of October.

Nothing quite like a major health disaster to make you appreciate the little things.  I’m actually getting my hair cut this week.  That’s something I haven’t been able to afford since I turned 30 (in March of 2012).  I’m able to meet one my besties for lunch this week.  It isn’t at a steakhouse, but just seeing her..alone…without husband/kids/parents is great.

I’m glad to be in a better place.  Hopefully in another 365 days it will be even better.

 

Sunday Funday!!

My husband has been counting down to this day since the Superbowl.

Now living with my parents, it is even more fun.

We would come over here on Sundays anyway, but now I have my stuff here and the ability to crash if I need to.

I survived my first work week.  I’m only doing 5 hours per day, but that is enough to kick my ass.

Trying to figure out if the fatigue is fibro related or autoimmune related.

I can tell the difference between the types of pain…sharp pains in my joints is usually autoimmune related.  The all over body ache, primarily in my muscles, is fibro.

The fatigue I’m feeling right now is slightly overwhelming.  It is taking extreme effort to do anything today.  My arms feel weighted, I feel like I’m walking in jello.

Also, I had a migraine from hell last night.

I’ll just blame everything on coming off of steroids.

I do get labs done this week, and I see the docs next week.

I have noticed an increase in floaters, but I’m not panicking yet.  I’m determined to wait it out until my appointment in October.

Time to get dressed up in front of the TV.  GO STEELERS!!

I survived the great move of 2013

So far…so good..

I really surprised myself with what I was able to do.  There are some things that I knew I couldn’t do, so I didn’t even try…like moving furniture.

But I was able to pack and to move some boxes.  I wasn’t slowing things down.  And that is good enough for me.

The first night we moved in here, I took a LONG LONG bubble bath to help with the muscle soreness.  It helped because the next day I could actually move everything.

Day 2 went much better.  I’m still in pain, but it is not unbearable at this point.

I went to yoga today with Sunshine.  Probably the most stressful yoga class I have ever been to.  Sunshine was one of the oldest kids at the Yogatime! class for kids and mommies.  And she was one of the best behaved.  But I didn’t get the usual benefit that I get from a nice, peaceful class.  Oh well.  I’ll have to go again soon.

I am walking every night with my husband.  He’s Mr. Super Athlete, he boxes, runs and played rugby in high school.  He’s going to start training for a marathon.  I haven’t tried to run yet, just a brisk walk is enough to get my blood pumping.  But I’m doing more and more each time we go.

And I work all this month.  Only four to six hours a day, but its something.  And it will definitely help the financial issues.

We will see how this week goes.  Hopefully our cat Punkin survives meeting my parent’s dogs.  Punkin hasn’t really left our bedroom much, but the dogs know she is there, and she knows they are there.  Its just a matter of time before the fireworks start.

Thank you for reading and for all he supportive comments.  I really appreciate them.

No rest for the weary..

I hate moving.

I absolutely hate it.

No one absolutely loves it, but its harder with chronic illness.

Of course, I procrastinated, thinking I would feel better once I got my Lyrica (which I haven’t gotten yet, hopefully this week). So we essentially move this weekend and nothing was packed as of this morning.

Yesterday was my last dose of steroids.  I celebrated by walking about a mile or so at the park.

Now my muscles are SCREAMING!!!

I feel completely drained of all energy.  Sleep was futile.  And Sunshine woke me up at 5 a.m. because she wanted to go to the first grade RIGHT NOW!!

I am also working a contract nursing job giving out the flu shots at local Wal Mart clinics for the next two months.  Part of this position requires me to bring all supplies to the locations. So now I have boxes of gloves, paper work, stacks of consent forms all over the apartment.

I am also trying to weed out “non-necessities” from three years of acquired crap.  Everything but our clothes, personal entertainment stuff and a few items of furniture are going into storage until we can get on sound financial footing again.

And Sunshine has grown at least three inches this past summer.  All of the pants that fit her in June now make her look like she’s ready for a flood.  And her feet grew too.

So I’m going through every item of her clothing, checking sizes and weeding out what still fits, what doesn’t, and what is too shabby to donate.

I am losing weight (finally) but I’m still 4 sizes too big for the majority of my wardrobe.  I’m still debating on what to do with that closet full of clothes.  I’m planning on losing the weight (and 10lbs since I’ve started the taper of the steroids is promising) but how much do I hold on to?

And then there is the box of Sunshine’s school projects.  I have nearly every drawing, project, scrap of paper since she was in preschool.  I know the majority of it has to go, but I hate throwing her art work away.

I have been practicing good fibro discipline in taking frequent breaks.  Having my husband do the heavy lifting and actually RESTING when I take a break.  There is a difference between “resting” while reading or typing and “resting” and just sitting still and letting your muscles relax.

I’m looking forward to the break from worrying about rent, food, utilities.  My parents are being so supportive and generous with their time and finances.  This will be the third time I have moved back in with them since I was officially “launched”.

So, back to the packing, the sorting.  Sometime between today and tomorrow I have to get a p.o. box, find a storage facility and set up my supplies for work.

Positive thinking:  I made a wonderful dinner for my parents, husband and daughter last night.  I think I may have finally proved to them that I can actually cook.

 

Trying…

I went overboard again…

I’m trying to jump start my health and I did way, way too much yesterday..

It is HOT in Texas.  It was 105 yesterday.  So we spent a few hours at the pool.

I did about 10 laps of the junior Olympic size pool.  I played with Sunshine, throwing her in the water, flipping her over.

And now I’m paying for it.  Dearly.

My muscles are very painful.  Its the fibro pain, not the autioimmune pain.  And it sucks.

It takes a tremendous amount of effort to do ANYTHING today.

I’m going to try to push through it.  We are planning to go back to the pool today (and probably every day this week, as the low temperature will be nearly 80).  I’m hoping to do some more laps and see if I can overcome this initial hurdle.

It is pretty apparent that we will eventually be moving.  So far, they can’t kick us out until February, so that’s a good thing.  I’m kind of hoping for a last minute miracle (child support, family support etc) to help us bridge the gap and allow us to pay on time.  As it stands, my husband doesn’t get paid again until the 7th, and that is four days  late on rent.

Sigh.

Positive thinking:

– school starts later this month.  As much as I love Sunshine…I am READY for school to start again.

– I will be working most of September and October in some capacity.  It doesn’t help the situation now, but at least I’ll be able to feed my kids…

– football and hockey seasons are on the horizion.  GO STEELERS!!  GO PENS!!

– my husband is amazing and I’m thankful every day that we found our way back to each other

Hoping this pain subsides…

 

And fibro rears it’s ugly head…

Today is the first day…probably in months…that I felt like I had fibromyalgia.

I guess with everything else I have going on, the fibro slips into the background.  But today I felt it.

How do I know the difference?  Well, with pain associated with my autoimmune disorder, I usually feel it in specific joints. Especially my hands, wrists, elbows and feet.

With the fibro, its more muscle pain.  And its ALL OVER.  Head to toe.

And the fatigue.  It hasn’t been easy getting out of bed for the past two weeks (since I started Plaquenil), but today it was worse.

Just my general movement throughout the house is hampered.  Ick.

But the kids got fed (three whole times!!), they were properly attired, and they didn’t burn the house down.  That is an accomplishment.

Hoping for a better tomorrow!!