Family Politics

On top of dealing with the vagrancies of Lupus, I also have to deal with all the issues of an older parent who is dealing with their own health issues.

Stress is on of the factors that contribute to Lupus flares and I live in a pressure cooker of stress with very little respite.  I go to work so that I can have a break. Yes, that's right. Work is less stressful than my home life.  How sad is that?

Here's an example of what I have to deal with.  Today was a general broadcast for my church. We could stay at home and listen.  Normally this is a nice break from the normal worship service.  Mom, who is hard of hearing, was having trouble with her hearing aids. This frustrates her to no end.  I can understand this.  I respect this.

She has headphones that she can use to focus the audio from the television into her hearing aids.  Of course she looks like she rocking out to something. Not enjoying a worship service.  As I try to convey they make her look cute, she takes complete offense and tells me I'm attacking her.

I don't make a big deal over the Lupus at home.  I just don't.  Mainly, because, I have to justify everything to my mother.  She wants detailed descriptions of everything, then she second guesses everything.

No, she does NOT have a medical degree.

I stand my ground and tell her that I'm not attacking her she is having none of this.  Apparently, her deafness is all about me.  That's right folks.  I have figured out a way to capitalize on the hearing impairment of my mother and make it all about me.

The moment those words crossed her lips I was flabbergasted.  FLABBERGASTED!!!!!!!!!!!!!!!

It's bad enough I have to deal with Lupus, but the insane imaginings of an aging parent is getting more than I can handle.  I'm going to have to fly the surrender flag soon and give the responsibility to the other siblings.  They will have to make up their minds on how to divide up care.  I just can't do this anymore.

Christmas Celebration

This Christmas has been a weird mixture of celebration and reticence.

Christmas is the time where people have been know to test the limits of my patience and endurance.  For the longest time I had no idea why.  Maybe, I was going crazy. Maybe, I was just plain cranky. Maybe, I was just a witch.

The relief I felt when I had an explanation given to me in September was a pure relief. I was none of the above.  Simply put - I was sick.

Having a parameter to work within suddenly made my ability to enjoy the holidays much more attainable.

This brings me to this merriest of days.  Instead of reading my mother's mind, holiday preparation became more of a team effort.  I could say 'no' and not feel guilty, picking and choosing what was important to me.  Making the interactions I chose that more valuable and remarkable to me.

Today, we had a ton of people over.  Kids running amok. A small dog like creature who was finally put into place by my very cranky cat. And my very happy pit bull who was the happiest of social butterflies.  Giving as much love as he received.  When the noise levels reached super sonic levels, I just found a quiet corner for a little bit.  Others gravitated with me seeking the same quiet.

Not that I don't have special memories of past Christmas's, but today is special to me because I could understand what my needs were and address them.

When the hoards left happy and full, the silence that filled the house was deafening yet comforting. The cessation of noise flung my already simmering head into a full blown migraine.

So, with the help of modern medicine, I settled in for a long winter nap.

Yes, the holidays are manageable.  With planning, perseverance and chutzpah.

Merry Christmas everyone!

A Time of Cheer

I've always had a love/hate relationship with this holiday season.

I love the fundamental spirit of Christmas.  The kindness, the generosity, the spiritual fulfillment that comes from the welcoming of our Savior. If you aren't Christian, many cultures have adopted the traditions of acts of kindness and charity during this season.  Overall there is a general out pouring of positive energy that can truly bring you closer to God and make you a happier person.  I try to keep that feeling with me all year round.

What drives me insane is that I get overwhelmed by the traditions of others.  You see, I'm single in a large family with tons of fabulous nieces and nephews.  Due to circumstances, I share a house with an aging parent who doesn't acknowledge that I don't need the family chaos.  Don't get me wrong. I love my family. I love to see them over the holidays. But I don't need to spend every moment making memories with them. My personal traditions are much simpler.  Very minimalist if you will.

I treasure my quiet time.  I work full time.  I'm surrounded by people all day.  One of the greatest gifts I can receive is the gift of alone time.  To certain family members, I appear Scroogish in my needs.

As I navigate the turbulent waters of this cheerful season, I will stay true to my course.  I will honor my faith, my family and myself.

And There's Progress

Tonight I had an interesting conversation with a family member who has been very resistant to my Lupus condition.  Denial would be an accurate description.  I've not made a huge issue with her, mainly because I've recognized that I can't change a person's mind. I can only make changes in my life, my perception, my reactions.

In the course of this particular conversation, not only did this family member acknowledge my Lupus, but the limitations that came along with it.

Inside my head, I was doing cartwheels and shouting 'HUZZAH!'. To the exterior observer, I was calm and collected not letting on to my inner joy.

This is a huge turning point, in our relationship. We talked openly about how Lupus was affecting me.  How the medication I was currently on was helping me, but not necessarily taking care of everything.  This was the first real, productive conversation we'd had about Lupus since September.

Will there be set backs?  Oh, guaranteed.  That is the nature of relationships.

Does this give me hope? ABSOLUTELY.

Patience is the name of the game when dealing with a circumstance that affects your entire spectrum of life.

The Elephant in the Room

  This month on the Lupus Foundation of America site, they hosted 15 Questions with Ms. Cindy Coney: Dealing with Stress - Balancing Family, Friends, Activities and Lupus.  I have to say that I found it encouraging to find that I wasn't the only one dealing with issues of stress, work/life balance and communication when it came to Lupus.


  I'm having problems communicating to certain family members about my struggles with this disease.  Because I'm still functioning, not collapsing in a puddle of writhing agony, bleeding from orifices, or projectile vomiting I must be exaggerating.  The most difficult part of this is that, this isn't the first time my family has dealt with a serious illness. My father passed of a serious fatal illness.  Even then, he didn't want to talk about the details.        
It was more the elephant in the room that no one talked about.  


  Here is my truth.  I can't live that way. In my case, Lupus isn't going to be fatal, it will be very inconvenient. It will impact me when I'm not careful.  Or when my body has a flare that I can't control.  I have to say no to family members and they just get a look on their face that says 'she's just being a drama queen.'


  No, there is no drama.  It's just me taking care of the elephant in the room. Because if it's not cared for, things will get ugly really fast.  

Desserts

Today started with a stress inducing phone call of the personal nature at work.  Not a way to start a packed day.  The person who started my day, was angry.  So angry that they had to spread their virally infectious nastiness and crap all over my morning.

Enter, stage left, a stress headache.  It's been waiting in the wings to take center stage for a couple of days now. But I've been successfully avoiding it, until this morning.

Stress has never been my friend. I do my best to avoid it.  Often times it would seem to an outside pair of eyes that I am in an avoidance pattern.  The reality is I pick and chose my battles.  Really.  There are things worth fighting about and things not worth my times.

The thing this morning? Not worth my time. But it certainly had an impact on me.

So, I'll work on being destressed and concentrate on my desserts - Chocolate straight up!

"Looking Sick"

I'm finding it challenging to have to defend how I feel when I don't 'Look Sick'.

What does that mean, looking sick?  Do I need to be breaking out into pink polka dots and zebra stripes? Seriously?

The truth about this disease is that sometimes it simply does not manifest itself in physical signs that can be readily identified.  Sometimes it does.  Do I have the 'butterfly'? Yes, but I've had that for years.  I always chalked that up to a ruddy complexion, so it's considered a normal part of me.  I'm fortunate not to have the discoid blemishes.

I just feel fatigued. I wake up exhausted. I hurt.  My joints ache, I have weird pains in my muscles.  My head hurts.  None of this is particularly new, just worse than it has been in years past.  All of this is hard to quantify.  Without gushing blood, open wounds, projectile vomiting or spiking fevers, there is nothing for someone outside my body to see.

When I'm trying to convey to my aged mother how I'm feeling, it becomes a oneupmanship - who's feeling crappier.  Apparently, I'm taking attention away from her.  She won't acknowledge that I could be having a bad day.  After all I'm functioning.

Well I've been 'functioning' for a long time.  I have to.  Who else is going to pay my bills, take care of my dog and do the things that are necessary.

I have a high tolerance for pain and discomfort.  Because, I've never put myself first. Well all of this changes.  I'm starting to get really angry.  My health, how I'm feeling, this disease is not a competition.  IT'S MY FREAKING REALITY!!!!!!

How dare it be minimize it because of fear.  I respect her fear, but I can't condone her diminishment of what I'm going through because she can't deal with is.  I am not looking for sympathy.  Frankly, I'm not looking for special circumstances.  I just want to be able to refuse an invitation or say 'I'm not up to going out today.' without getting a guilt trip.  Or without the most condescending of phrases, 'You don't look sick.'

I'm even angry at myself for allowing myself to play second fiddle.  I'm important.  My needs have to come first.  This is not being 'selfish', this is about me being healthy.

Family

I did the auntie thing this weekend and watched my brother's kids with my mom, so he and his wife could get away for a well deserved break.  This was definitely a tag team effort as a lively group that ranged from 10 (almost 11) to 18 months.  They were all great.  Really.

The 18 month old was a trooper with his little cute put-put-put and sheer charisma, his sisters all helped wrangle him.  Even the dog helped keep him entertained.

I quickly realized how tired I was by the time Sunday arrived.  I can't imagine how parents with Lupus handle their family lives.  I'm single, no children, just my fur-child. And I'm wiped out.

Would I trade the experience?  Absolutely not. Am I going to be paying for it. Absolutely.

I pushed myself to hard. My mom fell victim to a 24 hour bug, so I was the responsible adult.

I DO know that sometimes you just have to get things done.  This was one of those cases.  Will I have to do it again?  Maybe.  I'll be better prepared next time.

Defined by my Substance

'Death is at your door step and it will steal your innocence, but it will not steal your substance.'

 Mumford & Sons - Timshel

As I work through everything in my head (there is a lot of stuff in my head), I can't help but think about the frailties and limits of this life.  But at the same time, I'm in complete awe of the human will to move forward and survive.

All this sounds really contemplative.  What I'm really saying is that I want to be defined by my choices and the people who I know and who know me along my journey.  Whether I'm feeling good or bad, I really believe it will be how I handle my now that will ultimately define me.  

I don't want my substance to be stolen.  I want to be strengthened as I move forward in my moments of adversity.

Burying my Head in the Sand

Telling people outside my family about my Lupus has been a lot easier than figuring out how to tell the siblings about it.  I know that my friends will support me 100%.  I can trust them to be their for me through thick and thin.

They've never looked at me and said, "I just don't understand why you don't take better care of yourself."  Like Lupus gives you a choice.  You can be doing everything right.  Eating right, exercising, but this is a disease where the immune system futzes out and rebels.  In the computer world, we'd say a gremlin was in the hardware.

I love my family. I've discussed this with my mother.  She's processing this.  My father passed away from an unrelated terminal illness.  This is not something she wants to deal with.  I can't blame her. But part of me does.  She's my mother and I want her to listen.  So, if she's not listening, I'm pretty sure that the sibs won't react well either.

I'll tell them eventually, but the approach will be tough.  There is no easy way to do it.  I'm laying to the ground work.  Putting Lupus support information on the blogs I write that I know they read, on my Facebook page.

I know that in their own way they love me and don't want anything to be wrong with me.  I've seen them drowning in the depths of their denial.  Frankly, I'm not sure that I have the energy to deal with their fear.

Yes, I'm being passive aggressive about this.  I haven't fully processed this myself.

I'm going to go back to being an ostrich.

Information Overload

Having a label to all the oddball symptoms I've been having helps.  Having a mother who has now made it her project to find out all the ins and out of Lupus and all the medical ramifications of all the treatments, is going to send me over the edge.

Seriously.

I know that she loves me and wants me to be 'fixed' and healthy.  That is the role of a mother.  But 'fixing me' is something she can't do.

This is where I seriously have a hate/hate relationship with the internet.

Let the Adventure Begin

August 31, 2010, I finally got in to see the rheumatologist for symptoms I'd been feeling for a long time.  My GP had been at a loss to explain the exhaustion, over all body soreness particularly in the joints, persistent headaches and the over all decline in my general health.

A second bout of shingles in three years sent me over the edge. I never got over the general feeling of crapiness. After running a full panel of blood work, where my SED's were high and my A&A's were elevated, my doctor referred my to a rheumatologist.

I have to say that Dr. S was great.  He looked at everything. My over all history, an indepth look at how I'm feeling right now and looked at my current blood work.  He didn't discount anything that I had to say to him.  How refreshing.

His educated look at my current status was that I was leaning toward lupus.

I have to tell you that while lupus is scary in its own right, I feel relieved to have a direction to find relief and way to treat my issues.

Dr. S wanted to do more blood work and have his own lab run the tests so he could make a more in depth diagnosis.  We took baseline x-rays of my hands for the arthritic factors.

Mom is in denial.  She doesn't want me to have anything to be wrong with me. I understand that.  But the reality is, have a diagnosis means I can improve the quality of my life.  That is a HUGE bonus.  I can start getting my life back.