Who are you talking to???

Ok, I’ll admit it.  I talk to myself.  I talk to myself ALOT.  I don’t see anything wrong with it.  I find it rather cathartic.  I talk out the steps to things I’m doing or planning on doing.  I talk to myself while I’m doing things, kind of like I’m my own motivational speaker.  This works especially well when I’m working out. 

I talk to myself when I have to have an uncomfortable conversation with someone.  I found this particularly helpful when I was a teenager and I was preparing my ‘defense’ or my version of the story for my parents.  Wait… What??  Scratch that, I was a perfect child.  I never had to bend the truth to get out of trouble.

I find where I truly excel at talking to myself is in the area of “I am so freakin’ teed off and I wish I’d have thought of this to say to you when I was talking to you!”  I’m really, really good at this one.  I can hash and re-hash a conversation or situation.  After the fact, I always come up with EXTREMELY witty things I could have said or more cleaver ways to say the things I did manage to get out of my mouth. 

In my head, I’m a conversational genius!  Unfortunately, I have to keep interacting with actual people…..

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Sure, you’re always right, absolutely

We all know someone like this.  Someone who barrels into a room.  Blankets the area with their opinion.  Blatantly disregards anyone who says anything slightly different from their opinion.  Then turns tail and stomps out mid sentence when they don’t get their way.  I have to admit.  I’m as stubborn as the day is long.  I want my way.  If I’m invested in something or knowledgeable about a subject, I will voice my opinion and let myself be heard.  I will fight for my side, but I’m not ignorant enough to think I am always right about everything, all the time.  I fact, the older I get, the more I learn that I can not only be wrong (ssshhh, don’t tell anyone), but also that other people’s viewpoints or ways of doing things might be as equally right or efficient.  I’ve also learned along the way, that even when someone makes a choice or starts a process that is not right, it is best for them to learn, trip up, fail, and succeed on their own.  Sometimes the best lesson someone can learn is by learning it the hard way.  Whatever the case, when I’m in a situation with other people, if I voice my concerns and air it out, that’s the best I can do sometimes.  I know I will not always get my way, and I’ve learned to accept that.  The older I get, the easier it becomes to spot those ‘adults’ out there who still have to learn this lesson.

Now for the part of maturing that I have to work on…  The letting it go part.  See, I may have learned I don’t always have to fight to be right, but I don’t quite have a firm grasp on letting go of the emotion, anger, feelings involved and moving forward.  I, like a child, want to hold on to the grudge.  I want to gossip. (I know, you’re not supposed to admit to that, but I LOVE to gossip.)  I want to call multiple people and relay the story, juice it up a little, get them to commiserate with me, but I know I can’t.  Ok, technically, I can, but I  shouldn’t, so I won’t.  I’ll just let it all out in words, release it from my body and mind and move forward.  Let go and let God, (or Buddha, or Darwin, or whatever your flavor is…it makes no difference to me).

Ok, I think that’s enough maturing for today… Now where did I put my phone?

 

No one to be mad at

Usually when you are angry, you have a target, someone to complain about, focus your anger on, throw darts at their picture.  I’m not so lucky.  There’s no target when your angry at an illness.  My husband has a chronic health condition.  He’s had it for 10 years.  For the longest time, we didn’t have a name for it.  We went from doctor to doctor, specialist to specialist. Some just threw their hands up and never asked to see him again.  So thought he was crazy or making it up.  Others at least gave it a shot.   What we repeatedly heard was, “Yes, we know you have something.  These labs and tests results tell us there is something wrong.  We just don’t have enough of the puzzle to figure it out.”  “So I have to get sicker?” “Basically, yes.  When there are more pieces, we will be able to figure it out.”  Me – “So as he gets sicker while you figure it out, will you be able to reverse all of the things that happen to him?”  ” We don’t know.”  Let me tell you, that is not what you want to hear from a doctor.

So the hunt continued.  We found a rheumatologist who dedicated herself to him and has gotten us to where we are today.  She finally figured out that he has Sjogren’s syndrome.  Sjogren’s syndrome is an auto immune condition that involves inflammation in the body.  Now Sjogren’s isn’t that uncommon, but it is in men.  It usually occurs in women in their 40s.  He was in his 20s when the symptoms started.  He didn’t have the traditions symptoms.  Normal symptoms are dry eyes, dry mouth, inflammation in the tear ducts and saliva glands.  His symptoms were muscle weakness, fatigue, pain.  Along with those, he started having head pain, memory fog, dizziness.  This led him to a neurologist which found spots on his brain on an MRI.  More questions, less answers.  Ok, it’s Sjogren’s but there is something else going on.  We ended up at a specialist at Johns Hopkins.  He is a genius, no really.  He specializes in neurological rheumatology.  More tests later, the good doctor found out my husband has Sjogren’s with Neurological and Central Nervous System complications.  (That’s not the medical name, but it’s the name that you can understand.)  Basically, when Sjogren’s attacks men, it gets all jiggy in there and has a party.  The inflammation decided to enter his central nervous system and send the inflammation out to his body in nerve signals.  It went to his brain.  It went to his extremities.  It set up shop and is having a party.

Since then, we’ve been on numerous meds, none slowed it.  We have been put on IVIG and Cytoxan, no help.  In fact, his body seems superhuman and his condition seems to get worse with each med.  It’s like the cells said, “You thought that would work???  Now deal with this!”  We currently just finished plasmapheresis and a 3rd round of Rituxan.  He feels worse than ever.

With inflammation in the CNS, he has been having nerve damage for years.  He has constant numbness, burning, and pain.  He is much weaker and easily fatigued.  This is a man who used to run marathons, who now gets winded walking up stairs.  His skin is so sensitive to the touch, that clothes bother him.  He just grumpy, who wouldn’t.  He wants to play with the kids, doesn’t feel like it, but does it anyway because its important to make those memories with the kids.  And he works.  He’s old Polish stock; ‘if you’re still breathing, you’re still working.’  I think most people would have given up, but he just keeps going.  I marvel everyday at what he does, how he pushes though the pain and the fatigue to get through his day.

Chronic Autoimmune conditions are hell for the patient, but the loved ones struggle too.  I feel in an awkward situation most days. I can’t be mad at the drs.  They are trying everything they’ve got.   I can’t be mad at him.  Look how much he does do.  I’ve got no target, and I’ve got no reason to complain.  I’m not the one dealing with this conditions day in and day out….

I’m still mad.