Archive for the 'Personal' Category

   READING THIS POST COULD CAUSE EXTREME DROWSINESS.

Cutting to the BASICS – I wonder if anyone has experience with Wegener’s Granulomatosis and also suggestions for tasty alternatives to wheat bread?  And there really IS a library connection.  I promise.

OK.  It has been a long time since my last post.  Retirement has been busy – and mostly fun – but too much of the “busyness” has revolved around doctor appointments.  It would seem that we are finally closing in on a diagnosis of Wegener’s Granulomatosis.  Say that three times fast…I dare you!  Yuk.  Nasty, rare, immune disease.  Leave it to me to be different.

In addition to my GP, I have been to 2 pulmonologists, 1 ENT, 1 Allergist, and 1 Rheumatologist, and it has taken 18 months so far to get a diagnosis that makes some sense.  Maybe I should ask my hairdresser.  He is a smart guy and has about the same chance of a correct diagnosis as some of my specialists.

I have had a constant cough, have felt mildly ill and have had hoarseness, loss of smell and sinus infections, and periods where I was short of breath.  Asthma/COPD meds gave only very limited relief.  I was in the hospital for a week in August.  Lots of antibiotics and prednisone, x-rays and CT scans throughout the past 18 months. All the health professionals I have seen are convinced that the asthma/copd drugs they give me are going to give me instant relief and I am going to shout “Hallelujah!” Then they watch me take the medicine and are surprised when, indeed, there is very little improvement.  Well, duh!  That’s what I have been telling you!  But I guess they just have to see for themselves.

The allergist said testing showed only mild allergies to grass and trees. But she became concerned about an elevated ANCA level in my blood work and sent me to the rheumy who has diagnosed “mild wegener’s”.

From all I read, I am very skeptical of the diagnosis, because, with the exception of the hospital visit, I don’t seem anywhere near sick enough to have Wegeners. Right now I have no symptoms other than a constant cough and a wheeze on expiration that won’t go away. Still…I have plenty of energy, and have felt good most of the time since December. From my research, I did discover the difference between limited and systemic Wegener’s. But both seemed pretty serious to me – and way beyond the degree of sick I am right now.

After all, I can walk three miles. Granted, the first mile I sound like Darth Vader, but I am getting plenty of oxygen. After a mile, I can finally clear my throat and do the last two miles comfortably.

I don’t want to take the Imuran the rheumy has prescribed. It seems a bit like swatting a fly with a baseball bat. On the other hand, the doctor tells me if I don’t take it, I might develop full-blown WG. The treatment for that is prednisone and a chemo drug called Cytoxan….which would be more like swatting a fly with an atom bomb!

Right now my plan is to insist on a biopsy, since that is the only way to know for sure.

My PCP, who is a wonderful doctor, feels that I should not take an imunosuppresant at this point. She is an integrated medicine doctor and likes to look for natural cures. She has prescribed me plenty of “traditional” meds – but wants me to try cutting out GM wheat, corn and soy from my diet before trying Imuran. I know the research connecting those foods with immune problems – but if it has lead to WG, it has taken about 63 years to do so. Dropping them now does not seem like a quick fix to me. I switched to about 80% organic two years ago, and now plan to purchase a heavy-duty mixer so I can make my own bread with organic flour. I think we would be healthier as a population if we eliminated GM products from our diet. However, as a cure of this ongoing illness I have? Not so much….

I have to wonder why it takes so long to get a diagnosis. When my sinus problems began to linger on for more than 2 month, I started doing research and Wegeners kept coming up as a possibility. I should have said something to my doctors – but reading the symptoms, especially from those who have the disease, I just decided I was not sick enough to have it. Oh well. Hindsight is 20/20 as they say….

I just do not feel entirely comfortable about this diagnosis. I guess no one can satisfy me. I have been complaining about how long it has taken to make a diagnosis, and then when a new doctor makes a diagnosis after two visits and a few lab tests during a period of time when I feel almost normal…I complain that the diagnosis is too fast!

TAKE-AWAYS FROM ALL THIS?

1. I need to know if cutting out wheat, corn and soy are worth the agony.
   
2. Will organic wheat be less inflamatory?  I REALLY do not want to give up bread.  I keep getting inconclusive answers – and I sure would love to kill all those “research articles” AKA ads for wheatgrass juice!!
   
3. It all makes me hope that I have taught my students well –  to research deeply and think with an OPEN MIND.  None of us fits into a formula.

NO ONE is more metabolically challenged than I am.

I’ve been walking steadily (on average 4 times per week) for 4 months.  With a week off for surgery.  I’ve walked through almost every kind of weather.  The first 2 months, only 2 miles per day – but  4 miles per day for the  last 2 months.  Yay for me!

The sum total of my weight loss?  ONE whole pound.

So – I must be filling up on brownies and potato chips, right?  Not with my gall bladder.  It would bark big time.  I’ve been keeping pretty close track, and I eat between 1500 & 1800 calories per day.  I know, I know.  I COULD go down to 1200 a day.  But I am not a martyr.  Weight loss is not worth that kind of sacrifice to me.  I’ll just be chubby.  And I will keep on walking.

HOW TO RESIST THE DEVIL WHEN HE WHISPERS IN YOUR EAR

IT’S TOO COLD OUT – Don’t be a whimp.  Walk fast.  Dress in layers.  Breathe in that fresh air.

IT’S TOO HOT OUT – The devil is whispering that in my ear these days.  So – get a hat, remember to drink more, wear lighter clothes, wrap a wet bandana around your neck.  Take shorter walks till you get used to it.

IT’S BORING – Get yourself an ipod and sing all the way through it.  No one can hear you and complain.  Or round up a walking companion.  That doesn’t work for me, because I am looking to get away from people.

I DON’T HAVE TIME TO WALK – Go right before or after work.  Everyone can grab at least a half hour.  And just think how much fun it will be to blow off that annoying voice whispering in your ear about all the stuff you need to do at home. You don’t have to walk every day.  Every other day is fine.

(MY FAVORITE) IT’S A PAIN TO CHANGE INTO WALKING CLOTHES – Channel June Cleaver like I do.  Wear what you usually wear to work, then just put on your jacket/hoodie/walking vest and sun visor, grab a water bottle and go.  Then laugh yourself silly when you’ve walked 2 miles and realize that you are probably the only person around wearing a hoodie and pearls.

I NEVER LOSE WEIGHT ANYWAY –   So what?  The walking has improved my energy and disposition, AND it has raised my good cholesterol & my bone density while lowering my blood pressure.  So – go out and get your vital statistics before you start, and repeat them after a few months so that you can measure improvement chemically, if not via the scale.

So – that is the Trudge Report for January through April.  Happy May!!

Still walking – and enjoying it. The weather has mostly been cooperating and I am now up to 50 minutes a day. Mostly 4 days a week. When not meetinged-to-death, it can be as many as 5 days.

Most weekends, I take a break. But if weather or meetings have prevented 2 days of walking – then I will take an hour out of the weekend to “trudge.”

No surprise weight loss of course. As per my usual pattern, I gain and lose the same 3 pounds. But the benefits in how I feel are worth the effort.