Archive for June, 2010

Abducted by Aliens (or, back to the gym)

Well I’ve been back on the juice (prednisone) for a week now.  I was adamant about not taking it anymore, but I have to admit, I am glad my doctor talked me into it.  I’m only on 2.5mg, but I feel so much better today than I have in months.  I don’t know that I am in any less pain, but I have a ton more energy, so facing the pain is easier.

But….there is always a but….I haven’t slept very much in about a week.  Last night I layed down at about 1:30am (my hubby and I keep late hours), and I don’t think I fell asleep until about 6am.  Then I got up with the dog at 8:30.  I should be exhausted.

I layed in bed, physically drained.  I was too tired to even roll over, but I could not shut my mind off.  I turned on an insomnia meditation podcast – and I listened to the whole thing!  It was really boring – but no sleep.  I listened to something called binaural beats – these weird alien sounds that are supposed to induce your brainwaves into a sleep state – I just kept thinking that aliens were coming to get me.  I tried just laying in the quiet darkness and that didn’t work either.

So, around 10am I was feeling really tired, so I layed down, and wouldn’t you know it – I was out like a light.  I swear I am just programmed to sleep during the day!  Hubby came home and woke me up at noon and asked me if I wanted to go to the mall.  I have really been wanting to go the bookstore, so I should have been excited, but considering my lack of sleep I said no – I wanted to go back to sleep.

Thirty seconds later, guilt was picking at my brain.  I needed to get moving.  “Okay.  I’ll go.”  I dragged myself to a hot shower, fought back a few tears and got dressed.  By the time we were on our way, I felt pretty good.

We had a great day shopping.  Hubby even gave me a small shopping spree at the book store and I bought some history books I been wanting.  I bought two novels by Philippa Gregory, the author of “The Other Boleyn Girl,” and I can’t wait to get started on them.  (I’m a history buff).  I walked nearly the distance of the whole mall – which isn’t too big – maybe 1/2 mile?  I felt a little physically tired, but not in pain.  I felt motivated!  I haven’t felt that in ages!

So, believe it or not, when we got home and my husband was getting dressed to go the gym for his nightly workout, I said “I wanna go with you.”  What?  Did those aliens from last night take over my voice box?  Or my brain?  I haven’t been to the gym since maybe August of last year!  I figured I could try to ride on the stationary bike a little while he worked out.  I could try at least.

So, off to the gym we went.  I honestly had to wipe a few tears away as I entered the building.  I had so many fond memories of this place.  I was once so strong and fit.  And now….well…  I tried to let the sadness and frustration motivate me.  I managed to do ten minutes on the stationary bike.  Every few seconds the computer screen would flash “pedal faster”, and I would get ticked off.  But, I pedaled faster.

Almost immediately, my knees were screaming.  I’ve never really noticed too much trouble with my knees, but it was apparent now!  It felt like there were tiny pebbles inside my knees that were just grinding with every rotation.  But I gutted it out.  I thought it might get better – but it didn’t.  After ten minutes on the bike, I moved to the elliptical machine.

I’d never really used this machine, even when I was a workout queen.  Surprisingly, it felt pretty good.  My knees were still on fire, but I think if I had started on the elliptical, I would have done okay.  There was nearly no impact at all.  My muscles burned, but in a good way, and I almost broke a sweat.  I couldn’t go fast enough to really start breathing hard or anything, but I’m sure my heart rate was elevated well enough.  Ten more minutes on the elliptical, then a few ab exercises and I was struggling to walk out on my shaking limbs.

I feel great.  I’m happy.  I feel like I accomplished something.  I’m going to curl up in bed with my new books, and pray to God that I don’t regret this tomorrow!  Or….maybe I’ll feel even better tomorrow if I can get some sleep.  Aliens:  “Stay away tonight!”


What the Heck is Sjogren’s Syndrome?

So, today I got a new title.  Another diagnosis.  And this is one I don’t remember learning about in nursing school.  I’ve honestly never heard of it before – Sjogren’s Syndrome.  I’m not even sure how to pronounce it!

According to the Mayo Clinic,

Sjogren’s (SHOW-grins) syndrome is a disorder of your immune system often defined by its two most common symptoms — dry eyes and a dry mouth.

Sjogren’s syndrome often accompanies other autoimmune disorders, such as rheumatoid arthritis and lupus. In Sjogren’s syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased production of tears and saliva.

Once I started reading about the disorder, I felt almost a sense of relief.  I have been dealing with these symptoms for so long – I just thought it was normal!  I’m so relieved to know that there is help out there!

My Rheumatologist had asked me a few times if I had problems with dry eyes, and I had actually said no.  My eyes water constantly to the point that I have trouble even wearing makeup because it ends up all over my face.  Definitely not dry eyes?  I assumed I had allergies.  Well, she sent me to see an eye doctor anyway.

What a fun appointment that was!  For nearly three hours he poked and prodded on my eyes.  At one point he stuck some kind of litmus paper on my eyeballs and I had to sit there for what seemed like the longest sixty seconds of my life.  Apparently I was supposed to score about a thirty, but I only scored a five.  I guess that wasn’t good.  Then he did a similar test, but with a string instead of paper.  I felt like I had dental floss sticking out of my eyeballs!

Next, he applied green eye drops to my eyes so he could examine the surface to look for abrasions.  Then, because of the Plaquenil that I take, he did a vision field test.  This consisted of me sticking my head into this box and pushing a button every time I saw a little flash of light somewhere in my periphery.  It seemed to take forever, and I think I did bad on the test just because my attention span was shot and I was exhausted.

Well, long story short, apparently I do have dry eyes.  And I have it bad!  The doc explained that my eyes are watering saline because the tear ducts aren’t producing the oilier lubrication that they are supposed to produce.  Its like rebound tearing that is actually making the dry eyes worse.  The same thing is happening in my mouth, I suppose, which is why I keep getting all the sores.

Treatment?  More prescriptions!!  He prescribed me Restasis (with insurance – $60/month!) – an eyedrop that I have to use twice a day.  They burn a bit when I put them in, but over time this is supposed to increase the production of lubrication.  He also gave me some other eyedrops that look kind of like Vaseline, but they feel so good to my burning scratchy eyes!  It’s funny how you don’t realize something is bothering you until it stops.  Then you are like, “Wow!”

If that doesn’t work, I can undergo a “minor procedure” where they stick a little plug in the tear duct to prevent the reabsorption of my tears.  Sounds awful!  I’ll stick to the drops!

I guess I should have seen this problem a long time ago.  Well, I did, really, I just didn’t know there was a name for it – much less a cure (well, not a cure, really).  I have had the sores in my mouth for years!  Certain foods definitely make it worse – acidic food, tomatoes, Red Bull.  The eye thing, I should have known wasn’t normal.  As I said, eye makeup and I don’t get along!  Even eye creams make my eyes cry like a baby.  I can’t stand sitting near a fan or an air conditioner.  And when I wake up in the morning I feel like my eyelids are sandpaper.  I really just ignored all this because it wasn’t really that bothersome.

While I was at the drug store, I also came across some special toothpaste, mouthwash, and gum just for this problem.  I’m really excited to see if things improve.  I feel like I might have actually found a “quick fix” for some of my issues.

Maybe….but there was this little part I read about cancer.  Cancer?

Lymph nodes. A small percentage of people with Sjogren’s syndrome develop cancer of the lymph nodes (lymphoma).

End of paragraph?  Can you elaborate a little?  What’s a small percentage?  Well, I found the most common statistic to be about 5% of people with Sjogren’s eventually develop lymphoma.  That’s something lovely to think about.

Here is a great article I found about Sjogren’s Syndrome:

I also found these recommendations, I’ll let you know if I try them:

  • Tear substitutes are efficient in mild to moderate cases of dry eye.

  • Moisture-chamber eyeglasses will help preserve tear volume by minimizing airflow over the surface of the eye.
  • Avoiding dust, fumes, and excessive makeup, especially around the margin of the eyelid.
  • Brush frequently, both before and after meals, using an electric toothbrush. Floss and irrigate the teeth (using a Waterpik ® or other tool) frequently. Among Sjögren’s patients, oral hygiene is crucial in combating tooth decay. See a dentist regularly to monitor tooth decay and loss of enamel.
  • Use a pH-balanced mouthwash to lower acidity. Try 1/4 teaspoon of baking soda dissolved in 1/4 cup of warm water. Alcohol-free goldenseal (H. canadensis) can be used as an antibacterial mouthwash. Dissolve 30 drops in 2 oz water and swish the solution about in the mouth.
  • Avoid sugary foods. Bacteria produce acid for 20 minutes whenever sugar is ingested. Avoid acidic foods, including citrus fruits.
  • Drink non-acidic bottled water.
  • Use a straw to protect the mouth when drinking soft drinks and other acidic beverages.
  • Avoid abrasive toothpastes that can harm already compromised tooth enamel. Certain toothpastes (e.g., Biotene) have been specially formulated for individuals with dry mouth.
  • Drink plenty of water to replace the lost moisture in the oral cavity. (Remember to avoid acidic beverages like tomato and orange juice.)
  • A sugarless candy or sugar-free chewing gum kept in the mouth can stimulate saliva flow. Xylitol, a sugar substitute used in candy and gum, is thought by some to inhibit dental caries. Never sleep with anything in the mouth. Many health food stores carry rice- or barley-sweetened candies.
  • Avoid caffeine, which is diuretic.
  • Use a humidifier to keep the air moist.
  • Breathe through the nose rather than the mouth
  • A mixture of saline and aloe can relieve dry nasal membranes and nosebleeds and is gentle enough for repeated use.
  • Avoid antibacterial and abrasive soaps; use soaps with added oils or moisturizers and moisturize the skin after bathing.

Supplement recommendations found on the internet (I have not tried these):

  • EPA and DHA: 700 mg EPA and 500 mg DHA twice daily with food.
  • GLA: 285 mg one or two times daily with food.
  • Life Flora: An intestinal bacteria to assist with digestion
  • Thymic Immune Factors. Follow directions on label.
  • L-glutamine: 500 mg daily.
  • DHEA: Blood testing is recommended before DHEA therapy begins to establish a baseline; then a starting dose of 15 mg to 75 mg may be recommended. Retesting is recommended three to six weeks afterward to ensure youthful levels.
  • Goldenseal (H. canadensis): Follow directions on label.

Do I want to be Happy?

“Are you happy?”

That’s the question my husband asked me tonight.  The problem is – I don’t have a clue.

I want to be happy.  And I want him and the others around me to be happy.  But that is so broad.  What does that even mean?

Do I really mope around all the time?  Am I really a miserable person?  Maybe.  I’m not unhappy.  At least I don’t think I am.  My life is pretty good, with the exception of my illness.  But, maybe that’s a big exception.

What makes me happy?  I am happy when things are settled.  When the house is clean, the cabinets are stocked, the yard is trimmed and the flowers are blooming.  I like beauty – so beautiful surroundings make me happy.

My children make me happy, but they also can make me unhappy.  They are chaos defined, and that naturally is unsettling.  I like knowing that the kids are happy and well cared for and doing what they should be doing – but actually being around them – honestly isn’t at the top of my happy list.  That sounds horrible!  Does that make me a bad mom?

Let me state it another way.  I mean, I love my children dearly – I think about them night and day.  I just feel more content when they are happily playing outside, or are studying hard at school, or having fun at soccer practice, than I do when they are underfoot and creating messes at home and yelling and screaming at each other.  So – my kids make me happy – but from a distance!

Food makes me happy – sometimes.  I’m not one to have a daily binge, but occasionally, a delicious home cooked meal or a decadent desert really makes me happy.  It doesn’t even have to be indulgent.  Filling my kitchen with organic fruits and veggies from Central Market is a dream for me.

Shopping – does NOT make me happy.  But, then again, it can.  I hate shopping in a way, because I have some twisted issues with money and shopping that stem from my childhood.  Shopping stresses me and makes me depressed.  But, if I have money and time and no pressure – and I find what I’m looking for – it’s blissful.  It’s a fine line.

Planning makes me happy.  Probably more than anything.  Planning?  Yeah.  I don’t know why, but if I get inspired to do something, the process of planning and research is like a drug to me.  I spend days, even weeks planning a vacation.  I’ll research every restaurant and tourist stop.  I’ll read the reviews on every hotel and find the best deals.  The anticipation is so much more fun to me than the actual trip could ever be.  I do the same for home decorating, buying a car – you name it.  I obsess!  I have no idea why I’m like this.

My husband?  Does he make me happy?  I’m not sure.  I think the idea of him makes me happy.  The security makes me happy.  I love knowing that he is there – that he will come running if I am hurt, that the bills are paid, that I have someone to go to the movies with, that I have someone with whom to share this adventure of life.

But does actually being with him make me happy?  Sometimes.  Honestly, sometimes I just want him to go away.  Some days, nothing he does is right.  His yelling at the television, the way he scolds the children, his hair in the bathroom, even the food he eats just pisses me off.  But, there are times when I want nothing more than to be near him.  Sitting with him in his chair, or listening to him talk about work, or just smelling him make me want to melt.  I just wish the good days were more frequent than the bad.

I don’t want to feel the negativity that I feel.  I don’t want to harbor any ill feelings toward him.  I want to WANT to grow old in wedded bliss.  I just feel angry so often, and I’m not sure if he is making me angry, or if my anger is misdirected at him.

I know that there are things I want from him that he doesn’t give – or he gives in a way that I don’t like.  Foremost is the fact that I wish he were more romantic.  My husband is very playful – some might find it endearing – but it really irritates the heck out of me.  He shows affection by tickling, or wrestling, or giving wet willies.  That just makes me angry.  I want him to caress me, whisper kind words in my ear, and give me light kisses on the neck.  We seem to have such a gulf between us in this area and I don’t know if it can be fixed.  I know that many nights consist of him coming up and licking my face like a dog, then I pull away, then he gets put off, then I withdraw emotionally and physically, and then we both spend the evening angry and alone.  I’m not blaming only him – my reaction is a major cause as well.

I also know that I can truly be a bitch.  I know that there are times when he does do the right thing and I ruin it.  When he bought me a new washer and dryer, I (jokingly) asked him if he bought it because he was cheating on me.  I was referring to all the famous men who buy their wives new diamonds when they cheat.  I meant it to be a joke, but I came across as ungrateful.  Sometimes when he compliments me, I pooh-pooh his remarks, or he tries hard to take us to dinner or spend time with the kids and it seems to go unnoticed by me.

And I know that I am a very withdrawn, quiet person.  I guess I sort of have a wall up a lot of the time.  Kind of like an invisible force field that you have to penetrate to get to me.  And that wall probably looks like anger.  I’m not sure if it actually is, though.  I don’t always smile and have a sunny attitude.  I don’t even know how to do that.  I don’t know why I have this.  Maybe it’s that I am in deep thought, or maybe I am withdrawing from the chaos around me that I can’t emotionally handle, maybe I am simply in pain. Maybe it’s a protective mechanism that I learned as a child.  I don’t know.  I could probably pay a psychologist a small fortune to find out.

Maybe it’s just part of my personality.  Don’t we all have different dispositions?  Does everyone always walk around all cheery?  Perhaps I am just a quiet person.  I am always analyzing everything, and I often think about what I want to say before I say it – which sometimes makes me a woman of few words.  Who says I have to be the bubbly type all the time.  Is there something wrong with being a bit of a loner?  Maybe there isn’t anything wrong with my personality – except for the fact that it clashes with that of my husband’s?

I am quite content sitting alone in my room with a candle lit and a hot cup of tea and a good book.  My husband on the other hand wants to be at a baseball game with a dozen friends and he is the loudest in the stadium.  I don’t think one is right and one is wrong – but they are not interchangeable, that’s obvious.  But, does that mean that we can’t be happily married?  I thought for a while that our differences were okay.  He could do his thing while I do mine – but where does “we” or “us” come into play?  Have we forgotten that element?

It’s so odd that I can find myself fiercely jealous of things that I don’t even want.  There have been times when I’ve gotten green over a woman whom my husband was playing poker with, or even his guy friends when he spends time playing pool or eating out with them.  I felt jealous, but in all honesty, I didn’t really want to be in their place.  I’m so confusing.  I guess I just wanted the attention.   I didn’t want to be the one playing poker, I just wanted to be the one sitting at a table with him.  I can’t explain it.

I think I even get jealous of him.  I don’t know if its jealousy or competition.  He is very competitive as well, and I think it breeds between the two of us.  Especially since I’ve gotten sick, I envy his every move.  He can do everything I can’t do.  And everything I can do – he does better.  And if there IS something I think I do better, I critique his every breath.  There is so much hostility between us.

I don’t know where this has come from.  I truly don’t think it’s just me.  He critiques me constantly, he flies off the handle over the smallest things, he is SOOO horribly mean to me sometimes that I have even been physically afraid of him a times.  He has said and done things that I just can’t get out of my mind – from making fun of my hips, to comparing me to my crazy mother, to taking pictures of the dirty dishes in the sink, to downright calling me a bad mom.  I know we all say things we don’t mean – especially in the heat of the moment, but I let those words just fester in my head and the anger and defensiveness builds and builds….

I feel like every second of the day he is analyzing me and judging my actions.  I feel guilty when I stay in bed because I don’t feel well.  I imagine that he is filing it away as another point against me.  I stress over every move I make because I think he is judging me, but at the same time I don’t want to be judged so I rebel and get angry.  The resentment makes me want to be even less productive than I already am.  All over something imagined – or is it?  More anger….

Sometimes I think that I am intentionally pushing him away.  Unconsciously, I suppose.  I know that I don’t always like myself.  I can be really critical and harsh on myself and maybe I think that I don’t deserve him.  Are those dishes in the sink really bothering him, or are they bothering me, and I’m taking my frustration of not being able to wash them out on him?  Has he really noticed those five extra prednisone pounds, or am I just defensive because I think he has?

Why would he want to be with me?  Why should he have to be?  I think I have myself so convinced that he is going to leave me anyway when things get worse, that I just want the pain to be over now.  I am so certain that I am going to be stuck in a wheelchair and fat and psychotic – and I don’t want him to see me that way.  Maybe I am alienating our relationship because I don’t believe I deserve to be happy?  I’ve been known to do that.  I know that is typical behavior for a child of an alcoholic.  Maybe I’m so afraid of him leaving me, or hurting me, that I am staging a preemptive attack?

Perhaps the question shouldn’t be “are you happy?” but rather “do you want to be happy?”

Losing my Hair

Yesterday I lost my hair.  Well, I didn’t really lose it.  I know where it is.  It’s in a trash can somewhere at my beauty salon.

My husband loves long blond hair.  If he had the choice, he would divorce me and marry Paris Hilton.  But, I don’t see that happening anytime soon, so, I’m still sleeping well (at least when RA lets me).  I’ve been letting my hair grow out for about six years now and its gotten pretty long – Mid back length.  And yeah, its blond, even though I’m partial to red hair.  I’ve always figured that my hair is more important to my hubby than to me, after all, he is the one who has to look at it.  It’s one small thing I can do to make him happy – and until lately it wasn’t a big deal to me.

That is…until I started losing it.  I’m sure it doesn’t help that we have black sheets on our bed, but I started noticing globs of long blond hair all over the bed.  And all over the bathroom, and all over the house!  I could run my hands through my hair and pull out a fistful of locks.  I was panic-stricken for a while.

Then I started having major issues with my hair’s upkeep.  With my wrists and hands being swollen, painful, and somewhat immobile, keeping up my long hair was really a chore.  Washing it was difficult, blow drying it was painful, and styling it was becoming impossible.  I would go days without washing it and I looked horrid, and a messy ponytail had become my mainstay.

I finally got fed up!  So, yesterday, I chopped it off!

I made the appointment a few weeks ago, and I thought I might chicken out.  I thought I would get upset.  But, as the appointment approached, I was giddy!  When I told my beautician my intentions I think she questioned me a dozen times before she started snipping.  I expected to be overcome by emotion, and I was – I was thrilled!

It felt like I had been wearing a heavy, itchy wool sweater and I finally got to take it off.  It was like pounds of weight had been lifted off my shoulders.  I slept so much more comfortably last night not fighting with a ponytail or sweaty hair sticking to my neck.

So far, my husband claims to like the new look.  I’ve had a few comments from unknowingly rude friends.  “Why?” they ask.  “Are you crazy?”  “It was so long and pretty!”  I blow it off because I realize they have no clue that I am sick.

So, I might not look like long hair Barbie anymore, but short hair Barbie is pretty sexy, too!  And, if I keep losing my hair – maybe Barbie can rock the wigs!  (Maybe even a red one!)