I am having a normal day, playing with my children, talking with my husband, sitting at my table eating dinner; when without warning my body gives out on me.  I feel my hands begin to tingle.  Then my arms and legs go numb.  I stop speaking in mid-sentence and, for a moment, feel merely bewildered, rather than frightened.  I feel my body ooze to the floor as if I had suddenly begun to transform from a solid to a liquid.  I am not injured by the slow-motion fall.  I lie on the floor paralyzed, completely unable to move.   I cannot even open my lips in a silent scream.  I can scream only in my mind and I feel fear begin to build.  I mentally call out for help; focusing all my effort on somehow telepathically communicating my distress.  Sometimes I am alone in my dream.  At other times I am not and I watch as my husband or my family hover over me, concerned, but seemingly at a loss as to what to do.  They debate whether or not I should be taken to the emergency room and I mentally bellow, “YES!” but no one hears me, no one understands the horror of my situation.  Occasionally I am able to move a hand in my dream and I recall the sign language we are teaching to our children and sign “telephone” and then hold up five, four, one, and one finger in a row trying to entreat those around me to “call 911″, but no ambulance is ever summoned.  At this point in the dream I descend into utter terror, wondering if I will ever move again or if I will spend the rest of my days hovering alive, but still, on the cold, dusty wood floor.  It is usually at this point that I jerk awake, released from the paralysis of sleep, and lie in the dark.  I get up and use the bathroom whether I really need to or not – just to feel my legs moving underneath me confirming that the nightmare is just that.  I used to dream of monsters as a girl, specifically a man made out of yellow insulation that lived in the closet which housed our furnace.  He was terrifying, and yet, I could walk by that closet because I knew logically that he wasn’t real.  I am not nearly as certain that my current nightmare is entirely impossible.

I’ve known for a long time that something was “wrong” with me.  I had inexplicable pain that would come and go; at times crushing fatigue, and most memorably broke out in painful bumps on my hands two days before my wedding.  The symptoms never painted a complete picture, however.  It was only in 2004 that an answer started to emerge.  I was making an apple pie – rolling out the crust between two pieces of parchment paper and I gasped in pain.  The force of pushing down on the rolling pin had created a pain so sharp in my wrist that I dropped the rolling pin as if it was hot.  I examined my wrist closely looking for signs for bruising.  I mused as to how I could have broken my wrist without having known it – the pain was so severe.  My wrist looked perfectly healthy, but I was unable to finish rolling out the dough.  I consulted my primary care physician, I went to urgent care one night when the pain was excruciating.  I was diagnosed with carpal tunnel syndrome, tendinitis, and stress.  I knew that none of those were the answer.  It was my eye doctor who made the connection – she noticed my wrist in a splint and added in my complaints of dry eyes.  She asked me about fatigue, transient fevers, and other joint pain to which I replied yes.  She sat back and pronounced quietly, “You have rheumatoid arthritis”.  She then clarified that she couldn’t be sure; that I should consult a rheumatologist.  There were blood tests, bone density scans, X-rays, and MRIs, and finally after three years a definitive diagnosis of rheumatoid arthritis or RA for short.

RA is an auto-immune disease, meaning in simplistic terms, that a portion of the body’s immune system attacks healthy tissue somewhere in the body.  In the case of RA, the immune system primarily targets the synovium, the lining of the joints.  RA is a systemic disease, however, and is not limited to the joints. Typical symptoms include:  fatigue, stiffness, flu-like symptoms, low-grade fever, rheumatoid nodules (lumps of tissue under the skin), muscle pain, involvement of the glands around the eyes and mouth (causing decreased production of tears and saliva), anemia, and abnormally cold extremities.  In women some of the same antibodies present in those with RA can lead to miscarriage.  The drugs used to treat RA have common side effects of weight-gain, depression, loss of bone density, and increased infection.  Less common side effects include life-threatening infections and lymphoma.  Many of the drugs are not safe for pregnant or nursing women.  RA is a chronic disease, meaning there is no cure.  Without treatment RA leads to severe joint problems resulting in the loss of mobility and often organ involvement leading to an early death.  With treatment some of those with RA will lead an essentially normal life, others will not respond to treatment at all, while most will fall somewhere in-between.  I am one of those in-between.

I rarely ever even try to explain what it is like living with RA.  How walking can be so painful one day that I have to use a handicapped placard so that I can park as close as possible to my building and then go for a workout and can applesauce the next.  I know it doesn’t make sense to those around me.  I doesn’t make sense to me either.  Most people have no idea that I am sick at all.  They might notice me in a wrist brace from time to time, might notice that I seem to have a rather large number of doctor’s appointments for a thirty-two year old, and might notice that I seem to pop Tylenol and ibuprofen like breath mints.  If they know about the RA they comment on how good I look for someone who is “sick”, squinting at my high heels skeptically.  The thing is; unless you live with me, you’ll probably never see me looking “bad” – on my worst days I just don’t leave the house.  No one realizes that when the pain is bad it doesn’t matter whether I wear my two inch red patent leather heels or slippers; it hurts just the same so I figure I might as well look good.   I don’t wear a badge on my chest that says, “I took 17 pills today, how about you?” Living with a chronic disease is a strange thing.  I honestly don’t remember what it was like to feel “normal”.  A new normal is formed and oddly enough I can often even find myself thinking “I’m not really that sick” because they way I feel seems so typical at this point.

I had the nightmare several times in the past few weeks.  It is interesting to me that I should have it now.  I am on the lowest dose of prednisone I have been on in four years.  I am am able to exercise fairly regularly.  And more often than not, that handicapped placard stays tucked away in the center console of my car.  My RA is not “that bad”.  Then I woke up on Sunday around 9:00 am and was back asleep at 11:15.  I simply couldn’t stay awake.  Yesterday I was so dizzy I had trouble standing.  Today my right knee isn’t a joint; but an epicenter of pain.  How long will these renewed symptoms last? I have no idea.  They might disappear tomorrow or this might be the beginning of the next six months.  And to me that is the hardest part of living with a chronic disease.  I can handle the pain, but I still don’t know how to deal with the uncertainly.  What does RA mean for the rest of my life? Will I slowly morph from a young, capable, woman, into a shell and how can others help me if I do?  That is my nightmare.  Sometimes I just wish I dreamed of big hairy monsters.

Do you have any dreams that are too close for comfort?

]]> http://www.mendolo.com/2010/10/12/monsters/feed/ 4 http://www.mendolo.com/2009/12/12/who-needs-sleep/ http://www.mendolo.com/2009/12/12/who-needs-sleep/#comments Sat, 12 Dec 2009 08:47:30 +0000 Gina http://www.mendolo.com/?p=808 When I asked for topics to blog about Hannah suggested “mustering the will to expend great energy on projects”.  Just this week I looked around our backyard and I saw peas to trellis, invading morning glory to fight off, and bare patches that needed re-seeding and I though “Eh, I’m cold and promptly went inside and ate a brownie sundae.”  Yesterday I had a flat of late season strawberries sitting on my kitchen counter and after I got both kids down for a simulnap* I thought about crushing them and starting the jam making process but instead grabbed a down comforter and curled up on my sunny couch to take a nap. And you may recall that I made some grand proclamation about blogging every day during the month of December but it’s looking like every other day.

But for me, all of the above:  coming into the house and taking a break when I got cold, trying to take a nap, and going to bed rather than blogging,  are success rather than failures.  You see, I actually have the opposite problem that Hannah alluded to; I have an overabundance of will and expend far too much energy on projects with the inevitable result that I end up painfully achy and a tired that borders on utter exhaustion.  It sounds like a “good” problem to have, but it’s truly a struggle for me not to overdo life.  Until a couple of years ago I didn’t recognize it as a problem, but the demands of children and a progressive disease (rheumatoid arthritis) have made it impossible to ignore.  Now I am searching for the right balance in life between treating my body kindly in a physical sense and satisfying my, at times obsessive, need to be productive.  It’s often more a battle than a search.  Many people find TV, meditation, a hot bath relaxing but none of those traditional stress relievers work on me.  I find producing something to be one of the ultimate forms of relaxation.  I discovered in college that baking from scratch really soothed me and so to this day I will find my inner peace by baking bread, a cake, or cookies.  I also find being in the garden intensely soothing.  Further compounding the problem is that while I love to sleep and would probably function best with around nine hours a night I am naturally a night owl and find it impossible to go sleep before 11:00 pm.  Adding fuel to the fire is that I seem to have spawned another night owl clone of myself in Thomas.  He is often up until 10:00 or 11:00 with me, happily canning jam or grocery shopping late at night.  Earlier this week we were talking around 10:00 pm, winding Thomas down to go to bed, and got to the subject of Christmas presents.  He wants to make Christmas presents for his friends and brightly suggested that we “do some crafts”.  When I reminded him that it was bedtime he protested, “But I’m not tired.  I want to start a project!”  And for a split second I found myself thinking, “Yes…now is a great time for a project!  It’s quiet, Henry is sleeping…” and then I remembered:  it’s quiet and Henry is sleeping because it is late at night and time for bed!  I am, quite typically, awake until around 2:00 am when I seem to have a natural wave of sleepiness descend upon me.  This schedule worked adequately before I had children, but now I stay up until 2:00 am only to have Henry wake up shortly thereafter which means I don’t fall asleep soundly until around 3:00 am.  Then Henry wakes up once more before his ultimate wake-up time of around 8:00 am.  And of course, he could care less if it is a weekend or not.  The end result is that I am chronically sleep deprived.  And with rheumatoid arthritis, sleep deprivation is a double-edged sword resulting in not only exhaustion, but relentless joint pain – pain that is only improved with rest.

You might suggest that I hire a housekeeper or a gardener or that I could actually (gasp!) buy bread.  But quite frankly, that’s not going to happen.  Not just because such things are expensive or big uses of energy but because doing so will make me feel sick.  Wait, didn’t I just say that overdoing things makes my arthritis flare?  Well, yes it does, but even when I am in agonizing pain I don’t usually feel sick.  But when I have to give up something I love doing because of my arthritis I do feel sick – and weak and that is something I hate more than almost any amount of pain.  Rheumatoid arthritis has taken a lot of things from me and if takes my ability to be productive I feel like it will have taken me.

But I am trying so hard to step off this train of projects and slow down.  I don’t enjoy pain and I want to be able to be a good role model for my children in terms of taking care of myself.  I am doing that by prioritizing.  It’s important to me to make our own bread and jam, but as much as that book “Home Cheese Making” tempts me on my shelf I’m getting my mozzarella at the grocery store.  Our little farm/garden is picture perfect, but I didn’t prune my roses for four months.  And even though there are nearly always dishes to wash, one last email to send, or another sentence to write in a baby book, sometimes I just go to bed.  I am coming to terms that it is quite allight to accomplish n+1 every day rather than n+10.  I’ve accepted that forward progress does not mean that every one of life’s incremental steps is positive, instead sometimes I stand still or even take a step back.  It is the big picture over weeks and even years that is positive.  So, this year I am purchasing more Christmas presents than I am making (a step back from last year).  I make bake 90% of our bread (standing still).  And today I am not as tired as I was yesterday because I allowed myself to take a nap yesterday (forward progress).

* Simulnap = simultaneous nap = awesome.

I have to go back, I have no choice.  We really are doing fine financially, still living below our means, but as long as we live here and desire such niceties as prescription drugs and a roof over our heads I have to work.  I am beyond happy that I only have to go back three days a week rather than full-time.  I am in awe of the mothers I know who go back to work full-time with young children – it must be almost unbearably difficult.  Ever the planner, I’ve starded to gather the things I will need for work:  my laptop case, boxes of milk storage bags, updated pictures of the kids.  This has, of course, not escaped the notice of a persecptive prescholer and yesterday Thomas stopped suddenly in mid-play, turned to me and said “I’m sorry, Mama”.  “What for?”, I asked fearing something along the lines of a toileting accident.  “I have to go work” he replied with a heavy sigh and a look of dejection,  but he then added brightly “I will come back”.  Next Monday I have to go to work, but I will come back.  I will always come back.  And my heart, well, it never really leaves home at all.

]]> http://www.mendolo.com/2009/09/22/oh-i-feel-so-broke-up-i-wanna-go-home/feed/ 5 http://www.mendolo.com/2009/08/18/why-universal-healthcare-coverage-matters-to-me/ http://www.mendolo.com/2009/08/18/why-universal-healthcare-coverage-matters-to-me/#comments Tue, 18 Aug 2009 07:12:18 +0000 Gina http://www.mendolo.com/?p=736 I have employer provided health insurance.  It is, by American standards, “excellent” health insurance.  The plan covers me, my spouse, and my children.  I can choose any doctor I want.  I don’t need a referral to see a specialist.  My insurance carrier covered, a midwife, an OB, and on the order of a dozen ultrasounds during my last pregnancy.  My company pays approximately 80% of our premiums leaving us with a manageable premium to pay every month.  You might think that I would be opposed to a “government-run” health care system that “threatens to drive private insurers out of business”.  You would be wrong.

Why?  That excellent insurance is more than just a benefit, it’s a chain tethering me to a job that is sucking the soul out of me.  I’ve considered taking some drastic action for a career change, including quitting work and going back to school.  While we might be able to concoct a scenario in which we can still pay the mortgage and put food on the table there is no way we could afford, nor qualify for private health insurance on our own.  Going without insurance is an even more implausible option:  one of my medications alone runs over $17,000 a year.  Add in the other medications, the doctor’s visits, the MRIs, and the labs and my regular health care bill amounts to around $25,000 a year without insurance.  The only way I will be pursuing my dreams is if those dreams come with health insurance.  How many of you have taken or stayed at a job “for the benefits”?  A job that might take you away from your family or squash your spirit, but a job with health insurance?  How many of you have wondered about your job security in the current economy and thought anxiously of what might happen if your income and benefits vanish?

Someday I do hope to have a satisfying career but even then I won’t be happy with our current health care system.  It is absurdly expensive for both the insured and uninsured.  Even with insurance I expect our medical bills to top $10,000 this year.  When Thomas or Henry is sick or injured I can’t help but think, “”How much is this going to cost us?” as I soothe my baby.  And for the price, we Americans have the privilege of higher infant mortality and lower life expectancy than almost any other developed nation.

Health care reform is the critical issue on the national agenda.  There can be no economic stability for “main street” under the current paradigm.  There can be no equality when those of lower socioeconomic status have vastly more dire health outcomes than those with private insurance.  We must give all Americans access to affordable, high quality health care.  Just as in education there can be no “separate but equal”.  The health care industry cannot be expected to ofter what we need.  It is absurd as expecting people to drive 55 miles per hour because it is the most efficient speed to travel.  The fundamental purpose of government is to serve the interests of the people.  Large government programs are viewed with suspicion, and rightly so.  Yet, I would laugh at the hypocritical nature of America if it wasn’t so important:  the response to the big government “Cash for Clunkers” programs has been nothing short of euphoria, yet the response to health care reform proposals has been shaped by fear mongers into a state of hysteria.  Every person that I know would benefit under the current legislative proposals…every single person.  A government run health care program will not be perfect, but it can strive to achieve affordability and good health of for all Americans; a goal which the current system neither attempts to achieve or is even possible.