Saturday, January 29, 2011

What Having IH means to me

I wrote this in 2007 to help friends understand why I couldn't be on every committee and Board I used to be on.


The hardest part about IH for me is that I can't do everything I used to be able to do. I used to be a fireball. I used to run non-stop from morning to night. I worked full time as an architect and still do. I used to be on many committees at church and in professional organizations. I was president of a state women's organization. I never forgot anyone's birthday. Now, a day at work exhausts me - physically and mentally. It is all I can do to handle one outside thing and I don't always handle it very well. I have had to give up most everything else. I just don't have the energy anymore.

My brain thinks differently, too. Between the pressure and the headaches and the head-drug, I just think a few beats slower. It is frustrating and I struggle to keep it from being demoralizing.

I have a headache most every day. On a pain scale of 1 to 10, 0 being no pain and 10 being the end or my rope, most days, I'm at a 2 - 4. I can handle that. I can have short spikes up to 5 -6 most weeks that last several hours. Once a month or so, I'll have a day at about a 7. During a day I can have what I call lightening strikes that are 7 - 9's that last about 3 -4 seconds.

I've learned to just forge ahead and ignore them as best I can.

I work hard to deal with the mental and emotional issues of having a chronic illness. It is a daily struggle to handle the internal self talk about all I've lost to IH, to not smack the people who think because I don't complain I must be better (or cured...), to keep my dreams about my future alive, to keep hope for joy and love alive, and just to make sure I am working hard to be ME and use the energy I do have on things that bring me joy. I want to be sure I use my talents to make my life good and happy and useful.

I happen to have IH. I don’t want it to become who I AM.

I am very lucky that the drugs control it and I don't need brain surgery in form of a shunt. It is scary waiting for the day that ends, though. It may not ever come. It may be next month. The brain is a smart bugger and for a lot of people, it learns to adapt around the drugs. I hope it learns how to STOP doing this. :)

It is hard for people to understand. I look fine. I seem fine. I still work. I’m not doubled over in pain. I must be doing better. A number of very sweet and well meaning people don’t seem to understand why I’m not doing 5k’s anymore or why I’m not as completely organized as I used to be. People don’t understand why I won’t lead groups or organizations anymore. They are flabbergasted that I say "no" now. They seem to think I’m being lazy. It is hard to explain that my brain is just different now. I just don’t have the mental or physical stamina I used to have.

Even exercise makes me ill. Very. I swim a few days a week, as long as the head doesn’t talk back too loudly. I walk on the treadmill when I can. Exercise intolerance is pretty common.

But it is scary. What will I do that will make the head mad? It is hard sometimes to want to do anything because I am afraid it will make my head hurt or it will exhaust me. I have to watch that or I'll spend my life watching the world turn without me.

But the truth is, I can’t go all day like I used to be able to. The heat of summer is dangerous for me. Getting overly tired is dangerous for me. It isn’t merely an inconvenience. My brain is put under tremendous physical pressure and that is dangerous. Brain damage can occur. The spinal fluid bathes the optic nerves so a spike in pressure could crush an optic nerve and render me blind. It is hard to live with that fear.

People understand cancer. People don’t understand this. They can’t see this. If I haven’t mentioned it in a while, they think I’m cured. But, it may not ever go away. This is something I will probably live with for the rest of my life. My life is different now. But it is good. I still have so much. I am very lucky. And I am grateful.

Friday, January 28, 2011

A Jar of Memories

As the parent of a sick child, you've probably developed a thick skin.  I know that I have.  A normal life for us is not so normal for other people.  We have no problem canceling plans at the last second because the IH'er in our family has taken a turn for the worse.  We might feel mild disappointment at the canceled plans, but hey, we know how much worse things can be!  Friends, and even family, exclaim how disappointed they are that we have to cancel.  They sympathize and tell us that they understand how disappointed we must be.  The truth -- we're not that disappointed in canceled plans very often.  We're used to it.  In our family, we save the sad emotions for the times when we're holding a sick kid suffering unbearable headaches or severe nausea or a dizzy spell or random pains or . . .  I think that you get it.

I don't even cry anymore.  My tears have dried up after years of helping our daughter deal with IH.  I feel fortunate.  She has avoided surgery -- how lucky is that?!  I know far too many IH patients that have had to undergo multiple surgeries for shunts, shunt failures, infections, and revisions.  I am truly grateful that the medicines have helped her avoid surgery.  The medicines barely manage the high pressure and she's come dangerously close to needing a shunt a few times.

So why do I bring all this up?  Because I cried like a baby the other day.  I was searching through my jewelry drawer and came out with a baby food jar!  It was decorated with cute little Mother's Day stickers and ribbon.  Nine years ago, my daughter's teacher had the kids make a jar of favorite memories for their mothers.  What a sweet gift!  Unfortunately, I knew what that jar held.  Did I dare to open it and read all the memories again?  Oh, why not?  After all, my tears dried up years ago.  Big mistake!

In the jar were many pieces of brightly colored paper with one memory on each piece.  In her childish handwriting, she had printed:

  1. I remember when you were with me at the MRI.
  2. I remember when you were with me when I had to get my 1st spinal tap
  3. I remember when I threw up and you got me an ice pack
  4. I remember when I had a stomach migraine at the cabin and you helped me
  5. I remember when you were with me when I had to get blood drawn
  6. I remember when you held my hand when I got stitches
  7. I remember when you helped me get over my broken arm
There it is.  Everything that's not normal about chronic illness.  Even the stitches and broken arm can be blamed on IH because the doctor tried Topomax which severely affected her reflexes and she kept getting injured.   Just last week, I had been patting myself on the back for raising a chronically ill kid with a healthy attitude.  She has learned to persevere through very bad days.  She seldom asks to stay home on a bad day.  She's learned to live in the moment and let friends distract her with laughter, even when in pain.  She's learned to manage a full workload even when sick.  She's learned not to dwell on how things could have been.  She's learned how to be happy in spite of all the obstacles placed in front of her.  Perhaps it has nothing to do with me.  After all, she doesn't know what it's like to feel healthy for longer than a week.  But that memory jar reminded me that all is not well in our family.

The jar is safely back in the drawer for now.  I don't keep it to remind me of sad times.  I keep it to remind me that I've done a good job as a mother!  We parents cannot stop the world from hurting our children.  When they are sick, they have to suffer through many invasive procedures.  We can't make it hurt less, but we can be there with them to help get through it all.  In the end, that's what they remember  -- how you helped them by being there.