Immunity

One of the hardest things for me to come to terms with in dealing with two separate autoimmune diseases is the fact that I now have a compromised immune system due to the medications that I am taking.  It is quite ironic in a way...the very medications that slow the progression of my diseases and keep my own body from attacking itself, my blood from clumping and killing me, my immune cells from making my salivary glands produce spit, my nasal cavities and my lungs from drying out, are the same medications that make my immune system not attack the very things it should attack.

Don't get me wrong...it is not like I have to go around wearing a mask or a full body suit or anything.  I am not on my way to be the next bubble boy (or girl, since I lack the requisite penis to be a boy...).  It just means that a simple cold can very quickly progress to a sinus infection, bronchitis, or even pneumonia.  Secondary infections are very quickly becoming a given with me versus an occasional occurrence. Flu shots are no longer optional as the flu could very well kill me.

This is hard for me to accept sometimes.  Just the other day, I had to leave work because I got violently ill. I puked twice there, then twice more at home.  I am still not sure what was going on there...I wonder if it was something that might have given someone else just a rumbly in their tummy.  I hate that I have to use sick time, to leave work, because of this.  I hate that a simple cold forces me to have to take cough medicine and decongestants in the hope that I can stave off a bacterial infection.  I hate that I feel so badly when I get sick.

I would estimate that about 95% of the time, I feel good.  My meds work.  But that other 5%...ugh.  It is the ultimate betrayal when your own body turns against itself.  Then when you fight back and cause other issues...it is hard.  Especially when you are one who is used to just working through illness.  Having to accept that I physically CAN'T anymore is hard.

It was a lesson I needed to learn though...how to care for myself.  Most women tend to need this lesson.  It is a shame that it took this to get me to learn it.  It is more a shame that society will look at me and tell me that I need to just buck up and deal with it.  If I could not feel this way, I wouldn't.  I would trade all of my sick days for never having to deal with these issues.  But the reality is there is not a cure.  So I trudge along and hope that one day there will be.

Dog

Spartacus was barking hysterically this evening.  Now, that dog does not bark usually.  It is actually a pretty attractive trait of his, unlike his tendency to lean into you while you are petting him to the point that he knocks you both over.  He then pouts and simpers when you stop petting him but for the love of GOD DOG I AM ALREADY BRUISED UP ENOUGH FROM CHARLIE!!!

Deogie is the one who barks because he has little dog Napoleon syndrome.  He also has a bit of an identify crisis, mostly due to him not being a Pitt Bull like he wants to be.  Maximus is just a moron and if you push him over, he just falls over and lies there.  Which is nice when you want him to stay, but kinda sad when he can't find his way out from under a blanket.

But Spartacus, unless you have a bowl of food or a bone, does not like to exert even a quarter of the energy that Deogie so effortlessly expends being a ball of anxiety or that Maximus spends being floppy.  So when he barks, I usually look immediately whereas with the other two, I take my time.

Looking outside tonight, across the empty field just beyond the walnut tree at the edge of my property, there was a man emptying his truck into the yard waste bins.  No immediate threat, except I guess Spartacus did not like the lights on the top of his truck.  I stepped outside to yell "Hush!" at him and no sooner than I did than that truck took off and left.

Spartacus turned to look at me with wide eyes.  His reverential stare said, "OMG!  You made it go away!  MY HERO!!!"  He then laid down contentedly with a happy grin on his face.

If only my kids stayed thinking I had magical powers like the dogs.  Instead, they grow up and realize that I am imperfect.  That I can't give them everything their heart desires.  That I am human. 

You can learn a lot about how a dog loves his or her human.  Sometimes, we need to be reminded of why we love the ones around us.  We need to return to that simple way of being.  Minus the leg humping, cause that might get you arrested.

Delusional

There needs to be a Diagnostic and Statistical Manual of Mental Disorders diagnostic code for the psychotic state that is toddlerhood, I think.

Seriously.  Toddlers are some of the most rapidly cycling, labile, and quite frankly DELUSIONAL individual people on the planet.  Teenagers run a close second.

I have both in my household.

I also consume alcohol.

There may be a correlation.  Or causation.  Just sayin'.

Back to toddlerhood...they have some of the most firmly held beliefs in recorded and non-recorded history.  Ever try changing a toddler's mind about wearing a coat?  Eating dinner?  Not playing in traffic?  They hold onto their delusional beliefs with a steadfastness that cult leaders should study and try to perfect.  So do teenagers, but the bad part is they can argue back and aren't easily manhandled into doing what you want.  I can't exactly hold Elizabeth down and shove her into a coat.  Though I imagine it would be entertaining to a lot of people should I try.  I might also make the news for my 15 minutes...

I have been trying to change Charlie's mind about calling me Mommy.  It is too goddamned big for her to do this.  I am Mama and she is my baby.  End of story.  I was trying to get her to call me Mama instead and she just looks at me like I am smoking crack and goes about her day.

I tried to push the issue with her.  I told her, "Mommy is not an option here.  I am Mama.  You call me Mama and you are my baby."

She looked me directly in the eye and goes, "OK, Dada."  Then giggled.

Pass the martinis....

Saved

One thing that I repeatedly hammer home to my chemical dependency group is the disease model of addiction.  Chemical dependency is a progressive, chronic, treatable, and fatal disease, just like diabetes, thyroid disease, or heart disease.

And Sjogren's.

I don't often think about Sjogren's in that light.  No one really wants to confront their own mortality, let alone the possibility that a condition you have could potentially hasten it.  My father died from complications stemming from it.  It is a treatable, but not curable, disease.

I don't often think about the fact that my dry eyes will get worse.  That I might lose my teeth due to the dry mouth.  That my sinus infections might get more frequent and severe.  That I am more susceptible to pneumonia.  Neuropathy. Lymphoma. 

I never know what kind of day I am going to wake up to.  Most mornings, I move like an old lady getting out of bed.  The early morning stiffness most days lessens and I can function.  Then there are days when my body just aches.  When walking hurts.  When sitting hurts.  When the fatigue is so mind numbing that even sleep is not a relief.  Getting a simple cold is not simple for me.  It always almost develops into a sinus infection or bronchitis that requires antibiotics.

That being said...I can treat all of this.  I take medications to slow the progression of the disease.  I can limit my intake of gluten to help with the inflammation of my joints.  I can use eye drops, drink plenty of water, and suck on sugar free hard candies.  I can take antibiotics when I get an illness that other's immune systems would be able to fight off.

I know that how I feel some days is not normal.  I know to do all of this to take care of myself because I have a diagnosis.  I have a diagnosis because of my son.

Had Gabe never died, I would never have stopped to take a look at my own health.  I would have continued to think that the mind numbing fatigue was a function of being a parent.  That the joint pain was just from over use.  My eyes and mouth have been dry for so long that I don't remember what they feel like normally.

Had Gabe never died, I may have had many complications.  Not only do I have Sjogren's, but I have a clotting disorder.  What would it have taken to get my attention?  A stroke?  Pulmonary embolism?  Permanent incapacitation?  

I now focus on the fun in my life, precisely because I don't know for how long I can fully enjoy it.  I try to laugh at myself and the absurd around me because there are days when I don't want to.  I try to be there for my children who are living to the fullest I can now, because I don't know for how long my health will stick around.

I don't want my kids to remember me as being sick.  I also don't want Gabe's death to have been in vain.  The greatest gift that my son gave to me and his sisters is the gift of that diagnosis and the treatment that accompanies it.  Because of Gabe, I can eliminate that fatal part of the disease definition.

Thank you, son.