Dec 31, 2010

Back to Cancun

Here we are again...almost two years have passed since our last visit to Cancun. I'm excited to be here because truthfully, I don't remember much of our first visit.

In March of 2009 we vacationed here at one of the lower points of my illness trajectory. I saw much more of our hotel room than I did of the beach. A trip to the ruins just about did me in. I was cranky and tired and sick. Looking back, I wonder if I was an 'early adopter' of H1N1. Not long after we returned from our holiday, the whole flu thing came on the radar with Cancun as a sort of 'ground zero' for the virus.

In any case, the weather is warm, the pool is beautiful, the view is heaven. The buffet breakfast was too good to be true. Possibly the best french toast I've had since our Wedding Brunch of 2006. This resort is a true five star experience.

We were in Cuba earlier this week, but the weather, resort and service were all so awful we decided to "take a vacation from our vacation" and fly our at our first opportunity - fortunately, the first flight available was to Mexico.

I am so grateful to be here again. Grateful that my mother seems to be doing well, our fur-babies are in good care, my health appears to be stable (not counting my 3 hour naps for every four hours of wakefulness...). Grateful that my husband is almost finished his doctorate. We are so blessed.

Happy New Year, I hope the year ahead brings good health and happiness to us all!

Dec 23, 2010

How much of a perfectionist am I?

Yesterday I learned that my blood type is B positive...

I was annoyed that I didn't get an 'A'.

Dec 15, 2010

My Mom: Migraine or Stroke?

My mother is nothing like me - she's healthy and active, absolutely full of life (at age 70, she is averaging about 7,000 steps a day on her pedometer!), so it was unusual to get an emergency phone call regarding her health.

It started with her having a terrible headache behind her eye. Next came a feeling of extreme heat followed by difficulty speaking (she thought that she was making sense, but what came out of her mouth were just random words). Aphasia.

My first thought was stroke, so we rushed her to the hospital for evaluation. As I took her into the waiting room, I noticed that she was making sense...sort of...but using strange words and trailing off mid-sentence, forgetting what she had just been telling me.

Fortunately, a CT scan showed no signs of stroke. Unfortunately, there was no way to fully rule out a TIA (also known as mini-stroke).

Here's where it gets weird: my mother has a history of hemiplegic migraines that began about two years ago. These strange migraines look almost identical to a stroke. During the migraine, she loses feeling and control over half her body.

The first few times it happened, even the ER physicians thought she was having TIAs; but after a neurologist confirmed that it was an atypical presentation of migraine, we all got used to it and quit worrying when symptoms came over her.

This time was different, there was no aura, no numbness, no loss of control over one side of her body - only pain and aphasia.

We are waiting on another consult to re-evaluate, but at the moment, my money is on migraine.

Bizarre symptom of rare disorder? Maybe my mother and I are more alike than I thought.

Dec 11, 2010

Could it be MS?

I saw my third internal medicine specialist this week. My PCP, prompted by my recent high ANA level, decided my case was worthy of another look.

After taking a detailed history, the specialist told me that she didn't think my symptoms sounded like lupus, she said they made her consider MS.

Holy crap.

I have only known two people with MS, one spent two decades in a nursing home, the other spent most of her life in a wheelchair. That is scary, scary stuff.

Still, whatever is wrong with me is what it is. Discovering it -naming it - isn't going to make it worse.

Of course, she may come back with Chronic Fatigue Syndrome, which is just as good as Fibromyalgia for ensuring that you will be laughed out of most doctor's offices, and have eye rolls going behind your back.

The power of diagnosis. I wonder if physicians appreciate how much rests on having a name, a reason other than 'all in your head' to explain why you aren't fully participating in life?

Dec 7, 2010

Snow Day

This is my back deck. We are having a very big winter storm today. The city has been shut down and trust, our front driveway looks much like the back.

What a perfect time to decorate the Christmas tree and curl up by the fire with a warm mug of coffee...

Dec 6, 2010

pregnancy revisited

Since my last post on pregnancy, I have seen the "high risk obstetrician", my PCP, and the "paediatric pharmacologist" to get input on the advisability of pregnancy.

Interestingly, the biggest risk factor seems to be my blood clotting disorder, 'Factor V Leiden' (FVL). While it can be managed with daily injections of Low-Molecular-Weight Heparin (LMWH), there seems to be concern that FVL increases the overall risk of miscarriage and stillbirth.

The answer to whether or not I could stay on antidepressant drugs through a pregnancy is also unclear. The ideal would be to come off all medications, but that simply isn't an option.

Apparently, if my mystery illness does turn out to be lupus, that will also increase my risks.

So, do we want to chance it? I'm really not so sure right now.

Dec 2, 2010

a plea to my doctors

I am trying my best to get to the bottom of my symptoms, but I can't do it myself. I need you. I'm pleading with you:
  • Please help me find out what's wrong with me. I miss being able to work, study and rock climb. I miss going out with friends for dinner and drinks on Friday nights. I miss my old life. Something happened between then and now - help me find out what happened.
  • Please don't tell me that I need to learn to live with my symptoms. I am doing my best to cope, but until you can tell me what's wrong with me, I don't want to believe I will feel this way forever.
  • Please don't get annoyed that I ask for copies of my lab reports and ask you questions about flagged lab values. I am a curious person, desperate to find an answer. To you these questions are an annoyance, for me - this is my life slipping away.
  • Please don't patronize me. If you have something to say, please say it to me in person - not in your follow up report to my PCP.
I need you more than you can know. Please don't give up on me.