Musings

I heard the song "Isn't Ironic" today. First, let me say while I hate the song I have to admit I owned the CD back in the day. But it made me think about all the people who get bent out of shape that not every scenario being sung about is in fact Ironic.

Irony is not lost on me. I'm living and breathing irony and I think if tomorrow I sat down to write my book the first sentence would begin "The irony is not lost on me. The very thing that diagnosed me was also my cure."

When I got sick the first thing Dr. G did was schedule a lumbar puncture or spinal tap. When I saw Dr. S in Maryland he whipped out a safety pin and began poking me every which way. And when everyone put those results together I was given my diagnosis of a fairly rare and painful condition. Fast forward six months and in the office next to mine driving the car parked next to or one space over from me or my Mom was Dr. A with his needles ready to give my life back. The answer was there the whole time. I've learned through this process though that I needed to walk through it to appreciate and understand and to get to a point where I could accept that the answer was there. That common practices for me just weren't going to work. That I needed to be OPEN to new and different and that I actually prefer living this way. Life is a lot easier when you let go of some of those judgements about everything. Its also helpful to learn to tell people how you feel, set boundaries, and redefine your expectations of others as well as of yourself.

Being in acupuncture 2-3 times a week I have some quality time alone with my thoughts. I often think of writing my book and what a dedication page might look like. I imagine it would go something like this:

During this journey I have met such wonderful people and feel blessed to know that they are on my side. First to the people and teens of St. Matthew who prayed for me thank you for all the hard work! Daily I return the favor. Secondly, to the friends and family who stuck with me during my successes and my pitfalls. I know I was not always easy to love but thank you just the same. I love you back.

To Team Torres: The doctors and professionals that gave me information, hope, treatment, and health I am forever in your debt. To Dr. K for planting the idea in my head that I might have something more serious going on. Dr. G for being my all around champion, sticking to your guns and making sure the follow through happened. To Dr. BS for poking me with a pin and allowing me to cry in your office so that I could get the right diagnosis and to Dr. S for being the quarterback of it all. You were open to all ideas and provided me the right balance of comfort and doctoring. To Meg for teaching me how to dust myself off and to Jolene for teaching me how to call the plays correctly. Last but not least Dr. A who gave me my second wind thank you for putting me back in the game.

And the biggest Thank you to my husband who witnessed the entire journey and had to live it with me. Sometimes the best thing to say is the simplest. I love you. Always have. Always will.

Another Picture

My special vocabulary expands. This time into the world of diagnostic imaging which is actually somewhat helpful for my job. I obtain insurance authorizations for diagnostic imaging and sometimes that means finding certain equipment for patients. How many of you knew there are different types of MRI machines?? Beyond Open and standard?

I have to have a 3T MRI (3 Tessla the measurement of the magnet strength) and found out that a hospital much closer to our office has one such piece of equipment. I also found out that they do not have certain types of coils that might be needed for other patient's but thats totally unrelated to my journey. What's a coil? I think of it as a magnafying glass for the picture. generally its a tubular device they put around the body part being imaged. In my case I get to wear a head coil which involves first covering my ears with ear plugs, then headphones, then the coil, then adjusting it so my head can't move. Sometimes there is a mirror on the coil so that I can trick my brain into thinking I'm not being shoved into a tiny tube and am really looking "out". (This only goes so far and then comes my anti-anxiety medication. Too little I freak out, too much I fall asleep and screw up the test because I'm moving.)

I've had 6 MRI's in the last 12 months. 4 of which were for my brain. This test no longer freaks me out and there is something to be said for conditioning. However, it is now the results that make me anxious.

I saw Dr. G my neurologist on July 1st. The report seemed to describe more uptake (the disease) in new places but overall my disease seemed stable. Which is good and bad news. Good that I haven't gotten worse. Bad because I'm taking steroids and they aren't helping. And suffice it to say I gave up on the Gluten Free living. I still think it is beneficial but I'm having a hard time staying committed. And so my husband and I decided it might be time for some more drastic treatment options. (I'm going to lobby for whichever causes the most weight loss!) While my pain is under control the reality is that I'm still ill. Dr. G believes that the pain will stop being initiated when we get the diease in remission and that my dry eye will go away as well.

I'm hoping that also means the insomnia thats kicked in recently will as well. I see Dr. S in August and will repeat the MRI in September to see if the changes are noticible.

Pins and Needles

May 2010 - At my last Neurologist appointment the doctor gave me the option of receiving a prescription for pain killers. I declined the prescription for several reasons. The first of which is that I know how much pain I'm in and I could see myself becoming very dependant on the medication. Plus they held off on prescribing this kind of medication because headache sufferes tend to get rebound headaches and it makes the problem worse. The second is that our extended family has a history of addiction and I don't want to get near that. Perhaps I watch too much Intervention. So she suggested accupuncture as a hollistic way to ease the pain. My aunt has been treated with acupuncture for migraines and swears by it so I thought it was worth a shot if insurance could cover it.



Our insurance changed January 1st and I hadn't yet read the plan summary to see what kind of new coverage we had. Luckily our benefits for accupuncture changed and when another method of pain management has failed and performed by a chiropractor or certified accupuncturist in an office setting the treatment is covered. It took a couple of weeks for me to gather up the rates and to find someone who could help me but I landed on a doctor next to the office I work in.



The first day I had laser acupuncture based on the theory that energy can get your body back in tune. It was the strangest feeling. The neck pain I had after the Pain Management doctor did occipital nerve injections went away and I was back to localized pain in the temple area on the left side of my head. The he changed the laser position and frequency and the pain began to throb then slowly the throb slowed down and it became almost like a surge. I walked out of the office virtually pain free.



Today I had my second session. He used the laser as well as traditional acupuncture needles. He also did accupressure on my neck since those muscles are completely locked. Agian I walked out in no pain. I go back Friday and three times next week. We are hoping with aggresive treatment we can get the pain to go away. I feel hopeful agian and thats always a good thing.

Declined

I had a few interesting health related appointments in the past few weeks. The first was with my Primary Care Pysician who I haven't seen since all of my health issues began a year ago. This visit was kind of a bench mark for me. It gave me the opportunity to look back at where I was a year ago and take stock of where I've gone on this journey. I had hoped that this would be a positive kind of thing full of hope and answers but disease doesn't work that way. The second was giving my health information for life insurance purposes which highlighted my unique situation and left me wondering - what chances will the mathematicians and underwriters give me to survive.

Last April I was blissfully ignorant that there was a Sarcoidosis brain lesion pressing on my Trigeminal Nerve. I had yet to watch a monitor while a needle went into my spinal column or be told that I was a "slow drip". I hadn't had my first panic attack yet or any of the six MRI's that were to come. I had no idea that shortly medication would turn me into a basketcase and I would become uncognizable to myself and those around me. And perhaps the most sad: that a year later I would still struggle with those feelings and loose people I loved in the process.

Thats the part of the process I wasn't barganing for - time. That it might take time for me to get well or get to a place where I feel well because the two may not be the same. And so maybe this is an exercise in patience and stamina. To remind me that what doesn't kill you makes you stronger. Or maybe to teach me I do have some will power - A will to continue on and try and find any way to get better. If you had told me last April I would have seen a doctor in Baltimore or a chiropractor or a holistic practitioner I may have told you you were the basket case!

And the insurance people - they declined me. But not for sarcoidosis of the brain just for having sarcoidosis in general. I lost that application six years ago at my initial diagnosis. Its their loss. Because I've been assured by several specialists and physicians that this disease is not going to kill me...and that can only make me stronger.

Another week down and I did pretty good. I find myself eating Jimmy John's Unwiches and Chipotle Burrito Bowls (I like the fact that their produce is largely organic.). Herbie and I managed to polish off a bag or Tostitos and Jar of Salsa but I was excited to learn that on the Gluten/Dairy Free I can have corn. I'll be eating a lot of Mexican I think.

I did have one major let down. I thought I was being all smart and we ordered KFC but GRILLED! The next day though I checked their website and almost every item listed Gluten. I'm not sure if its because of cross contamination or if its something they use to season the chicken but that was a major bummer. You win some and lose some I guess.

In the win column though was my discovery that I can eat Miss Meringue cookies which are also fat free! And a hold out in my cabinet from Weight Watchers.
http://www.worldpantry.com/cgi-bin/ncommerce3/ExecMacro/missmeringue/home.d2w/report They taste like Lucky Charm marshmallow. YUMMY!

My husband and I are going to try Texas de Brazil for dinner this weekend. Wonderful salad bar and great Brazilian BBQ so as long as I can stay away from the bread I should be good.

Rhi-Education

Like I said I figured I needed to learn some more about these dietary restrictions. How do I communicate to those around me what I can eat if I'm not really sure. And how to I eat in places like resturants and parties when I didn't make the food myself. So I bought Living Gluten Free for Dummies. Of course there is such a book!

How much Gluten does it take to set off a person who has an allergy to it? A teeny crumb - not even a whole crumb. And why does this help me? Because Celiac's disease (inability to process Gluten) is an autoimmune disorder.

I also bought Jenny McCarthy's book Louder than Words not only was it an amazing story but the Gluten Free Dairy Free diet helped her son with his Autism.

In the meantime I've seen a USANA Vitamin presentation on how to live healthier and also reduce inflammation.

Gluten for Punishment

So we headed off to Disney and the first three days I did really well. My family snacked on Ice Cream - I had a pickle. They ate popcorn I had peacans. We had packed snacks to bring in the park with us and I made a special trail mix of nuts and raisins without the peanuts.

Our first night there we went to The Garden Grill Resturant at Epcot to have dinner with Chip and Dale, Pluto and Mickey. Disney has accomodations for people with food allergies so they sent the chef out to talk with me about what I could and couldn't have. They had gluten free rice rolls - and made my plate seperate from the family style meal that was served. The Turkey and fresh veggies were amazing but I couldn't keep myself from trying the cranberry stuffing that the rest of my family was eating. Desert for them was a blueberry muffin with whipped cream and mine was a brownie. I have to say I didn't care for the brownie. I had also ordered a cake to celebrate the birthdays of my husband and my sister-in-law's boyfriend and since I watch a TON of Food Network I was dying to taste a famous Disney cake. And so the spiral began and I paid dearly for it.

Suffice it to say by the end of the week I had thrown my dietary restrictions to the wind and had sampled some of Disney World Resorts finest food: Fried Chicken from the 50's Prime Time Cafe, Prime Rib and Gniocchi Soup from Cinderella's Royal Table (In the Castle - IN THE CASTLE... Come on who isn't going to eat like royalty in the castle. Excuse me chef I'll just have the salad for the $50 I paid to get in here.)And the dessert..... Oh the dessert.

While I did try to keep the snacking to a minmum and opted for fruit pops for the Mickey shaped ice cream by Friday I started to have a sore throat. Did I mention Thursday and Friday it poured? We wore ponchos all day. By Saturday my ears were bothering me and by Sunday night I was coughing. Thankfully my Mother-in-Law had Sudafed but it wasn't helping. Monday morning I opted to sleep in instead of hit the park for our last day and by 8PM I was running a 101 fever. (I bring a thermometer with me everywhere since fevers are a big indication of sarcoid issues.)

Have you ever been on a plane with a fever? Let me tell you its miserable. I ended up calling in sick the next day and saw my doctor. She sent me for a chest X-ray to rule out Pnemonia. (It was normal).

Now lots of people go to Florida and get sick. There are a ton of germy kids and an airplane, and climate changes involved but I apsolutely feel that if I had kept up eating to boost my immune system what ever bug I caught would not have been able to do as much damage.

And since I was wondering about how much of these allergens can mess with your immune system I decided it was time to educate myself.