I have a lot to say

But all of my energy went into writing a Eulogy last week and quite honestly I'm spent.

My lovely Grandmother Carolyn passed away the day before Thanksgiving. I knew I loved her when she was alive I guess I didn't realize exactly how much until she was gone.

The doctor probably never had a patient so relieved to be told they had ringworm. And the irony is that I probably got it at the gym. Most people would probably not have picked it up but since I have no immune system I did. He gave me some creams and already its going away. My follow up visit is the same week the other guy got me in for my 1st appointment. Confirmation that I made the right decision.

A large portion of my weekend is going to be devouted to Sarcoidosis. I am attending a Patient Conference tomorrow which I'm really looking forward to. To hear physicians (including my own) discuss the cutting edge information of the field will be great. And on Sunday then we will be going through insurance stuff which is causing a big headache. For whatever reason my insurance has decided to be unhelpful with the doctors who were trying to alieviate my pain.

We also have some fun things going on. Tonight I am going to see Cake Boss - Buddy Valastro from TLC demonstrate baking and cake decorating. YEAH!!! This is a show my husband and I watch religiously and his family and traditions remind me a lot of my own family.

Saturday we have an Italian Dinner at my Grandparent's church and I'll get to see my Grandpa Auctioneer which is always a ton of fun. (We used to run an auction house as a family and I have a lot of fun memories of those times.) My Grandma's Siblings are coming to see her for the first time since her diagnosis so I probably won't get to see her.

And Sunday I have a baby shower for a friend of mine. I'm so excited for her and her husband and the shower will be a lot of fun.

"I'll take Other Specialists for $300 please Alex"

So we had an amazing vacation. When I have a moment I'll upload some very inticing pictures. And while the beginning of the week started off pretty well I gained back some of the weight I had lost. (At someone point I was tired of giving my husband more than 1/2 of the yumminess.)

The day or two before we left I noticed this little bump on the inside of my right thigh. I thought maybe it was just irritation from the gym shorts I had on. Until it started to spread. And itch like crazy. And on vacation it got worse. So I came home and had to make an appointment with a dermatologist.

I have seen two dermatologists in the past. The one office is now gone and the other guy I didn't care for. I saw them for an allergic reaction to fake nails and can no longer wear nail polish on my hands. So imagine my dissapointment when the highly recommended dermatologist didn't take my insurance plan...So I had to go searching for someone in network.

Now some might say I'm jumping the gun that my primary doctor could treat me. Yes she could treat me but I want this biopsied. If it is the Cutaneous Sarcoidosis that I suspect it is I want to know for sure. Additionally, we have a family history of skin cancer and I want to make sure that I'm watching that carefully.

I put in my search parameters - 5 miles Nada. 10 miles - 4 doctors. The guy I didn't like the guy who has no degree information listed and 2 other doctors. I call the first one because their office is listed around the corner from where I work and he's on staff at the hospital I go to. Girl #1 answers - Oh I don't know if he treats that let me transfer you. Girl#2 - yes he treats that but I don't know when he'll be in that office. Girl#3 - Umm we can see you Dec 1st but why didn't Girl#1 make the appointment?? He's there every other week otherwise you can drive an hour to come see us. Ok fine. He is a specialist I expect a wait. You know because the Botox is really important to some people and a potential autoimmune lesion should go 3 weeks without treatment.
I'm sorry thats not the response we were looking for.

So I googled the other doctor. Umm HELLOOO Gorgeous People. It appears to be a husband and wife practice and they could be in an Italian Fashion house Ad. I admit I rolled my eyes. So I call not expecting anything better. Girl#1 answers. Answers all my questions. Yes he sees these symptoms frequently. Yes we take your insurance. (Wait you aren't going to transfer me???)

How soon could I be seen?

DAILY DOUBLE!!! Doo do doo do do doo do (You know the theme song)

How is this Thursday 3:30PM?


Who is my new Dermatologist!!

No Pain No Gain (Or Loss)

7.5 lbs lost so far. And let me tell you I'm feeling every fiber in my arm muscles today. Literally, I can't lift my elbows higher than my chest. And we won't even begin to discuss how much my ass hurts. The incline on the tredmill was 10.0. And I must make funny faces because my trainer kept laughing at me. My muscles were so tired last night it was impossible to wash my hair. Or style it this AM so its up in a clip and I don't care how I look. Well I do... but not about my hair. I'm leaving on vacation tomorrow and I don't want to be at work. Plus I'm a little queesy due to my headache despite my hour of acupuncture this am so maybe I'm also a little crabby.

I'm not sure why we booked a 9:00AM flight but maybe that will mean we'll be able to hit a park or see friends for dinner tomorrow night. Or laze by the pool because its supposed to be 85 in Florida tomorrow and it was 32 this AM in Chicago. If we had rain we could have had snow. Or take a really nice nap - in fresh sheets on an enormous bed.

But here is my dilemna - what shoes to bring. I'm not a "shoe person" like my Mom and Sister in Law are. That being said though we are bringing just our carry ons and I'm concerned I'm not going to have enough room for my shoes. I want to bring my shape ups and gym shoes but then I need flip flops and flats to match my Snow White Costume. Thats 4 pairs! Craziness. The nice thing about staying at our timeshare is we have a washer and dryer in unit so we don't have to bring 7 outfits. But I do have to bring work out clothes. The entire trip is planned around eating so in order not to backslide I have to get out of bed and hit the gym before we go to the park.

We are very much looking forward to this trip. Aside from our honeymoon this is the first real vacation we have taken by ourselves. I don't count blizzards as vacation - unless they are the kind in a cup. We mapped out our days and even decided to thrown in a trip to Universal Studios and Medieval Times - all bought with timeshare points! I've lived within 20 minutes of a Medieval Times for 15+ years and have never been! So have a good week and I'll be back with lots of yummy looking pictures of food and wine (and tequila).

I did good!

So apparently 80 lbs might be too lofty of a goal! And that didn't come from me. It came from the trainer. And at my 1st personal training session last night my trainer Patrick told me I did good and I'm not as out of shape as I thought I was.

WOAH! Seriously?? Yeah me. So I just thought I'd share. That and I lost 5lbs in the last 3 weeks! And I'm actually looking forward to going to the gym tonight.

Biggest Loser

So I've decided to share my goals with my blogger friends. I talked about trying to look good when you don't FEEL good and I'm hoping this latest committment to myself will halp me look AND feel good. I am loosing (catch the positive affirmation there?) 80 pounds. By The end of May when we go to Walt Disney World with my husband's family. Short term is 20 pounds by our December trip to Las Vegas. I have some halter tops in my closet I'd like to wear when we go.

So how do I plan on getting there? Well I'm using weightwatchers.com to track my points and activity. I rejoined Lifetime Fitness. I'm in not 1 but 2 Biggest Loser Contests. One at work that goes until the week before Thanksgiving and another with My husband, and his Sister and her boyfriend. This one goes until the trip and the prize is $360. At the moment I'm not that excited about the money. My drive is coming from the ability to shop in stores I've never shopped in as an adult. To go into the Disney shops and pick out any sweatshirt I want and not worry if its going to fit.

I took a picture of me from my sophmore year soccer uniform and put it as my walpaper on my cell phone. The original went up on the refridgerator. Thats the other part - I'm only buying healthy nutritious food.

I've put in my planner the fitness classes I want to take - such as Latin Fusion (seriously this kicked my butt last week we crunk'd, can-can'd, jai ho'd, and macarena'd our way through 60 minutes. I take my gym bag with me and have an extra change of clotehs in it just in case. I also got up on Sunday BEFORE friends came over to work out.

And while I would love to hire a trainor my free sessions are just going to have to do for now.

My biggest challenge is going to be going to the Disney Food and Wine Festival in 11 days. But we are going to work out in the morning and wear our shape-up to the parks. Who knows maybe I'll find some healthy food that I love that I would not have tried.

So please cheer me on. As i'm taking this part of my health back. I may not be able to will the Sarcoid into remission but I can will myself back into a size 10 jean.

Cheerful Outfit

Yesterday I had this awesome encounter with a patient of ours. He needed help with some insurance claims which means I'm the person who would help him. I walked in the treatment room and he STOOD to great me. His wife said "Oh! You're the person I spoke with on the phone. So nice to meet you." This patient had a partial nephrectomy for kidney cancer. Turns out his son took out a cancer policy for this "just in case". Thats such a cheerful outfit! You've been so helpful. We appreciate all that you do! I was glowing by the time I was finished. I went off to lunch on a cloud! And it got me thinking - Am I that kind of patient. Am I complimentary enough to people who do their job correctly? Do I remember them and tell them so. Do they leave feeling euphoria after interacting with me? Or do I wallow in chronic illness and need to take a lesson from the cancer people who seem to always have the best outlook? I had a guy tell me "This should be fun.'" in a very sincere voice after I collected $2000 from him for Prostate Cancer surgery. I know this morning I had a nice chat about tequila with my acupuncture doctor. And his staff is always sweet and compliments my wardrobe. But I see them every week. When I was first diagnosed with Neurosarcoid I read the book "Model Patient" by Karen Duffy. It was a great point of view for me to read but certainly not everyone will get her humor. She talks about trying to look nice and be nice and really OWN your illness. Good advice.

So I always try to LOOK good when I don't feel good. Sometimes this is easier said than done. Especially, since I often can't wear make-up (which makes me feel pretty) due to my dry eye issue. (Which hopefully will be fixed tomorrow as we are trying new eye plugs.) But I try to look as put together as I can. How about you?

The Nerve!

I had a Neurologist appointment with Dr. G today to get the results of last week's MRI. (Which went pretty well - no tears and only a fleeting panic when the table moved back.) And she said I'm stable! Which in medical terminology means no change from last time. Which means I didn't get worse!! YEAH

But it also means I didn't get better...BOOO! There are two nerves actively inflammed my trigeminal nerve and an abduces nerve that I didn't catch the full name of (and since the receptionist lady wasn't going out of her way to help - BIG SURPRISE - I elected to have the MRI mailed to me.) but is next to the trigeminal nerve. And she seemed fairly surprised to learn I elected to start the Methotrexate since that "takes pregnancy off the table" (for now).

In that moment I wished we were friends. I wished she would tell me honestly what she was thinking. I wished I could say, Hey! Lets go grab a margarita and you tell me what you would tell your sister to do in my shoes." And to some that might be a strange thought but I took the time to do what a lot of people don't. Find doctors that I actually like. They are down to earth. Friendly. They don't rush me through their office. And I absolutely trust them - because after all it is my life we are dealing with.

She checked in on my pain and asked about the steroids. Checked my reflexes told me my boots were super cute and sent me on my way with a script for another MRI in 6 months.

Happy Birthday to ME!!

So today is my 29th Birthday. Holidays and Birthdays are now somewhat of a mile marker for me on this journey. I remember very clearly my 20th birthday as the next day I woke up to towers falling on TV. I had no idea how much change could go on in my life in 9 years. I didn't know that Septemeber 10th would be the last day BEFORE a day so horrific we just call call it by numbers. Or that my brother would end up going to war. Or that I would marry the man I was dating at the time.

I spent my 21st Birthday having a beer with my Grandpa and a shot with my Grandma. My 22nd Birthday my bestfriend put my house key in the ignition of my new car and 23 was just after I finished dealing with my first go round with Pulmonary Sarcoid. My 24th Birthday was shortly after I got back from Climbing a Mountain. My 25th Birthday was a surprise bridal shower thrown by my future in-laws so that day was spent with family. I have no recollection of my 26th birthday (and sadly not because we had a big party) - I just don't remember. My 27th Birthday we had dinner at Claim jumpers and I couldn't have my Giant Eclair because I had surgery the next day.

That leaves last year and 28 and I can say I really felt it sucked. Mainly because I felt everything sucked. So I'm really happy to report that today I had PERFECT weather - blue sky chilly but not cold and lots of really amazing wishes from friends and family. I feel very special today. So thank you to everyone who had a hand in that.

So here is my Birthday Wish and since no candle is involved I can share it with you - that I feel as blessed everyday. And that I continue to be prepared and capable of handling everything that comes my way this last year of my 20s.

KISS Committee

It's amazing how when God shuts one door He opens a window. As I mentioned in my previous post I used to be the Youth Ministry coordinator of my childhood Parish. I ended up leaving this job by choice but probably just before my position was "eliminated". A writing on the wall kind of thing. The problem is I LOVED this work. I loved working with the teenagers in my charge. They kept me young, made me laugh. Lifted my spirit when I was down. They renewed my faith in the coming generation and they reminded me that with Youth nothing seems impossible. I also was not asked to come back and teach confirmation which I expected and am fine with but still pissed me off. (That people can come in and uproot my entire Parish is something it took a long time to get over.) Soooo I have a little bit of extra time.



And of course today I received a phone call to give up some of that time - to The Foundation For Sarcoidosis Research . I was asked to be on their planning committe for their annual K.I.S.S. (Kick in to Stop Sarcoidosis) Event thats held in February. I was super honered and very excited - until I was told I'd be responsible for selling 10 tickets @ $150. But with the support of my husband and some amazing friends I think I can proably sell the tickets. We volunteer at this event almost every year and people always ask me how we came to volunteer and most are shocked to find out I have Sarcoidosis.

So thank you God for giving me an opportunity to help myself and give back to this foundation that raises research money for this disease. When I was first diagnosed there was only one website that I found helpful - and when I was able to meet the founder and President just a short while later I was so grateful. Come to think of it that was a chance meeting too.

I Answered "Good"

I had a wonderful Labor Day weekend. We had beautiful weather. My idea of PERFECT infact. I had a slight set back on Sunday as I a) skipped the sunblock on my body prior to the baseball game b)forgot that the Methotrexate makes me even MORE sensative to the sun. I'm pretty pasty to begin with so my skin tone is currently "lobster".

I was able to spend Monday with my Mom which was really nice. (We work together so I see her everyday but Monday was all about hanging out and not work.) We hit the big craft fair which turned out to be a pretty emotional morning for me!?!?!

The first thing that had us crying was the generosity of a complete stranger. We had wondered over to this booth that had the "This Hat Looks Good On Everyone" Hat. Priced $40 they were really soft and several different styles and colors and versitile. The lady came over to help us and we had said - My Grandma is going through chemo. She's going to loose her hair. So after a few minutes we settled on one. When Mom went to pay she handed her the bag and said, "this is for Grandma...No charge." Instantly we started to cry. I couldn't believe this woman just handed over her handiwork to a complete stranger. She had no idea what an impact that gesture could have to a family so blindsided by illness.

A little later I heard my high school band marching down the parade route playing the song we played in Disney World at Epcot. "Late in the Evening" by Paul Simon. I got goose bumps. Then my Mother started crying. She has a great memory of us coming around the corner at Epcot playing this song and its so important that we played it at our reception to announce the wedding party. Seriously we have to be the only two people in history to cry at a craft fair.

As we were leaving a group of the Miss Septemberfest contestants walked by and one of them was a previous Youth Minister of mine. I started this blog after I had parted ways with my job as Youth Ministry Coordinator of my childhood Parish but these teens were a huge part of my life and I miss them a great deal. She looked lovely in her red gown and as I called out to her she came running back towards me. She gave me a big hug and said "I miss you". It warmed my heart. She then asked me how I was doing healthwise and I said "good.. everythings pretty good".

The answer suprised me. If you had been living inside my head you would understand how incredibly far I've come. No longer do I have the urge to educate EVERYONE on neurosarcoid or make them understand why I was feeling like a basketcase. I've accepted the fact that I have an illness but I've been able to stop thinking of my life in terms of before and after I became sick. And i've veen stopped labeling myself as sick. I was capable of a normal answer. And I didn't feel like I was lying. Its true I am good. I've got a way to control my pain. Doctors working on a solution and a sense of control about everything that a year ago I wasn't capable of. And the insight to recognize this truely makes me feel like I've won something. But even more I knew and believed that this young, beautiful spirit in front of me really meant that she missed me. The confidence I had lost has been restored and I was able to feel the concern in her voice. I promised her coffee and she said she'd like that. :) And then I felt old ....

Grandma Update

So its Ovarian Cancer which falls under the "Do not read the information on the internet and if you do take it with a grain of salt" category. The stuff on line is pretty grim mainly because Ovarian cancer is not one that is usually caught early. It usually is caught after it metasticizes and starts to cause symptoms that prompt doctors to do scans. Her Gynelogical Oncologist and Oncologist have told us that this is treatable and that they can keep the Cancer under control for some time time, years in fact. And her chemo is fairly forgiving on the body. She won't experience any other side effects other than loosing her hair. I'm sure this is going to be upsetting but its worth dealing with to get back to living.

Life's Short - Make it count

This was last week's lesson. My grandmother was admitted to the hospital for Pneumonia. Only it wasn't Pneumonia that was the main issue. It's the cancer they subsequently found. And as someone who works with cancer patients daily the diagnosis in and of itself is not necessarily the scary part. But the talk of treatable vs. curable, large masses, metastatic disease, and a jump straight to chemotherapy scare me to tears.



I'm nearly 29 so I know I'm fortunate to still have 3 of my 4 grandparents around. And I understand that people don't live forever and while no one has given us an arbitrary amount of time - no matter how long its not enough. And illness doesn't knock on your door and say "Is now good for you? I'd really like to shake your world upside down." You can't tell it "No. Sorry you'll have to come back another time because I just got my life back together and I'm on a treatment that might finally work and I haven't had kids yet and they need to meet her and I prefer it was with her hair all there."

Never did I think that someday I'd be giving advice to my Grandma about how to handle a chronic illness. And maybe that's part of why I have to go through mine - to be able to understand and support and empathize with others. As she talked about the fear and the exhaustion I understood in a way I couldn't possible know 20 months ago. I agreed it was hard to get people to understand that what you could do a few weeks ago you are no longer capable of. And I was not embarrassed for her as she wavered between tears and resolve because that happens too and its OKAY.

My cousin called me and his first words were "Rhiannon, I don't know how to feel about this. I don't know how to go about the rest of my day." And my brilliant response? "We just have to do the best we can do and be the best people we can be and continue making Grandma proud." And after some of his resolve wavered so did mine, somehow we were able to get off the phone both of us feeling better. Even more though was my Grandma's response "I'm so happy he called you it makes me proud to know you have each other." We've been doing a pretty good job of making Life count. And that gives me some strength as we gear up for this next battle.

The Brand is not Saltine

I've eaten a 1/2 box of Saltine crackers by myself this week. I don't even want to think about how much gluten that is but that seems to be the only thing helping my queasiness. When I went to the store to buy the crackers I discovered that they are actually called Premium. Saltine describes the type of cracker as it was emblazoned on the generic brand. I of course bought the generic think hey - its a cracker. I was later informed by my penny pinching husband that I should have splurged on the name brand as they are saltier.

Yes my friends I've entered into the world of chemotherapy. Dr. Sweiss prescribed Methotrexate. MTX for short. And side effects I'm experiencing so far are headache (keep the well duh's to a minimum this is a different type of headache) hot flashes and nausea. LOTS of Nausea. Oh and some vomiting.

My co-worker told me I looked like I should be on a boat today with my striped shirt and linen pants. I told her I felt like I was on a boat. Acupuncture helped some today but I tell you I had needles EVERYWHERE. My knee, my cheeks, my ears, collar bone, chest, feet, hand. We are going to switch my appointments to Fridays so that I have it the day after I take the MTX. The good news the folic acid the doc prescribed is doing wonders for my nails!

I Can See Clearly Now

Sandra Bullock said when she met her baby for the first time the song What a Wonderful World popped in her head. I had never experienced this until yesterday. Sure I've had the opposite happen. Heard a song and had a memory pop in my head. In fact Cannon in D does this to me with my husband. His face as I was walking down the aisle on our wedding day flashes and I instantly feel happy and safe. For the first time yesterday I had I had "I Can See Clearly Now" pop in my head as I was thinking about my medical appointments from yesterday in the shower this morning.

I can see clearly now, the rain is gone,

I can see all obstacles in my way

Gone are the dark clouds that had me blind

It's gonna be a bright (bright), bright (bright) Sun-Shiny day.

I think I can make it now, the pain is gone

All of the bad feelings have disappeared

Here is the rainbow I've been prayin for

It's gonna be a bright (bright), bright (bright)Sun-Shiny day.

Look all around, there's nothin but blue skies

Look straight ahead, nothin but blue skies

I can see clearly now, the rain is gone,

I can see all obstacles in my way

Gone are the dark clouds that had me blind

It's gonna be a bright (bright), bright (bright) Sun-Shiny day.

~ Johnny Nash

I "graduated" out of therapy yesterday. For 3 visits in a row I didn't cry. I felt happy. I could talk about my circumstance without grief and with a confidence I had forgotten I possess. In short, I felt like myself again. Sure a new version of myself one who will no longer be walked all over. One who no longer bottles it all in. One who learned to set boundaries and one who has an entirely new view of the world.



I had a roommate in college who hated this song. Mainly, because the Chicago radio stations always play it while it is raining. (As if the imagery could make us forget the torrential rains we get or the snarling of traffic.) But I've always had a soft spot for it. Why not look forward to the times when there are Sun-shiny Days? And Blue Skies? In my family this is actually an adjective. Blue Skying is dreaming of the impossible or improbable. And the lyrics describe my current - dark clouds no-longer obstructing - view. My pain is gone and my bad feelings have disappeared.



I also saw my specialist yesterday and she prescribed Methotrexate which is essentially "baby chemo". And I'm already experiencing the nausea. And while this might be an obstacle in my way I think I can make it now. At least long enough to get healthy.



Rainbows have always been a sign for me of good things to come. So when I got in my car this morning and the song came on I took it as a sign especially since I was looking straight ahead, nothin but blue skies. It was the rainbow I'd been prayin for.

I'll admit

I'll admit it. Yesterday I was crabby. REALLY Crabby. There was no trigger that I could tell other than pain. Cramps and backache and headache. I was PMSing big time and I don't think I've been that crabby in a long time. I was hot and tired and achey and I just wanted to go to sleep but I couldn't. The heating pad was too hot, my fan was not cold enough and the dog decided that would be a good time to find his new squeeker toy. My husband had retreated to the basement around the time I told him not to hug me and asked me what my problem was.

He had a point. I didn't really have a problem except for the feeling of ALL of my nerve endings in every part of my body firing at once. But how do you explain that to someone who has never felt that? And then I feel guilty since my pain is better shouldn't I be grateful? Its not as bad as it was. And I felt bad for being so witchy to my husband. He was a really good guy yesterday and I gave him credit in the "for future use" memory bank. Next time he's crabby I'll try to be as understanding.

When he came to bed he did rub my shoulders and told me I looked restless and even offered to turn the air conditioning up higher since he could feel how hot I was. I thanked him apologized and then finally fell asleep.

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.

Progress Report

So I think week 1 went pretty good. For the most part temptation was overlooked and I felt full. I do feel more energized and midweek of week 2 I actually think my head pain has subsided. I don't know if I can attribute that to the diet alone but also the chiropractic adjustments I've been getting. The emotional boost has also been positive so I'm sure that is also at play.

I've lost 17lbs since 1/10/10 and I recently ran into a customer of mine who didn't recognize me. So the results of this have been apparent.

I was able to find something at a chinese restaurant this week that was on my allergen free plan and although I did cheat with some sweet and sour chicken I only ate 1/2 of the meal.

We are off to Disney world next week so I'm a little nervous about how to keep all this going but they have Gluten free menus too!

I've been eating trail mix of raisins and nuts (except peanuts) from Trader Joe's. Drinking Naked Juice with the added antioxidants and lots of salad and fruit.

Learning about Gluten Free Living

Last friday I was treated to a wonderful meal at Wildfire by my friend Jessica since they have a gluten free menu. This was particularly exciting to me as a different drug rep brought giant pans of Portillos Pasta for lunch along with ANOTHER chocolate cake.

So we met and I did have 2 glasses of wine - which technically are on the avoidance list but our Chiropractor says you should pick two things in this kind of restrictive diet you will allow yourself to have.

We had a fabulous baked goat cheese appetizer served with gluten free and no wheat foccacia bread. DELICIOUS.

The only problem was our waiter. I had asked a question and he never got back to me. In fact he deserted us. I ordered a Turkey Burger from the Gluten free menu that came with roasted veggies. It came with cheese on it and he was nowhere to be found to ask about what kind of cheese since that is one of my restrictions.

I'm not proud of how I acted and luckily I have an incredibly supportive and honest friend who pointed out to me that perhaps I had reacted too harshly or strongly but basically I was really angry at the waiter.

The menu said nothing about it being a cheese-turkey burger. And I assumed that a restaurant that had a dietary restriction menu would list specific things on it as what I've read people don't only have one restriction. But that was a wrong assumption on my part and I should have asked. I was frustrated and while that's not an excuse perhaps all of this change and how I've been feeling caught up with me.

The gluten free bun was really good and the turkey burger was awesome as was the flour less chocolate cake that I ate despite the butter in it....

Rhi-energized

I have a lot to update everyone about as I've attempted a Gluten free menu and even Chinese food. I have come to realize that there are people actually reading this blog so I'd love some feed back about what you want to know about.

In the past 5 days I've spoken with some really amazing friends so while it was on my mind I wanted to thank you for your support. Jessica took me out for an amazingly yummy dinner by finding some gluten free places. Karen checked in via e-mail wanting to know how week 1 went and Joe told me this blog was inspirational which blew me away. And my husband didn't complain when I made his favorite meal without bread. (If you've had my pepper stuff you'd understand.) My parents have also been great and Mom is already starting to try and figure out alternates for Holidays for me.

I guess I never put it out there before but when you are trying to make a change like I am its important for me to feel like those around me get it. Right or wrong its my process and I feel blessed to have people in my life who are going to cheer me on in this.

So from the bottom of my heart thank you for reading and sharing in my journey and giving me the courage to be open.

Days 3 & 4 - Portillos Brought in for Lunch

Wednesday wasn't that exciting. I stuck to it. I ate spinach salad with Vadalia Onion, Grape Tomatoes and a dressing that my Grandma has been mixing for every family meal I can remember. Conola Oil, Apple Cider Vinegar, and Garlic Salt. Interestingly enough, this dressing is like comfort food to me. It reminds me of my whole family gathered around a table laughing and joking at Christmas or Thanksgiving or my 10th Birthday and I'm pretty sure it would be on my "Last Meal" list. I've decided I'm not a big fan of carrots without Ranch Dressing and since I can't have that - I will no longer be packing carrots in my lunch. (Much to my dog's dismay) I actually skipped dinner Wednesday since I had such a bad headache and went to bed about 8PM.

Thursday on the other hand... The day started with the Chiropractor trying to help ease my headache and I think she did to some degree as the pain is back down around a 6/7. I had a V-8 Fusion for breakfast on the way to work. Have you ever read one of those bottles? The nutritional information is for 1 serving which surprisingly is 1 bottle but they print on there that its one whole fruit and one whole vegetable serving per 16 oz or something - and the bottle is only 12oz.

I work in physicians office and Thursday and Friday are a big day for Drug Reps to bring in lunches to talk to the doctors. Yesterday she brought in Portillos. Now in case you are reading this and you don't know what Portillos is - its only the BEST Chicago Hot Dog you can get and their catering of Hot Dogs comes with all the fixings and she also got their Cheeseburgers, Italian Beefs, and Chicken Sandwiches. Even better is their Chocolate Cake. Now I like chocolate but I'm not a big fan of chocolate flavored things like chocolate cake or chocolate ice cream but I would CRAWL to get some of this cake.

So I go back to the lunch room and sit down at the table and everyone has their plates with Hot Dogs (Did I mention I could probably live off Hot Dogs?) and Beefs, and Chopped Salad. And I think - I can't even have the salad because of the pasta in it. So I open my Red lunch bag and pull out my Spinach Salad and Grandma's dressing and Raspberries, and Almond Butter and Banana and everyone stares at me.

Wow Rhiannon you have some willpower.

I'm sorry that its going to smell like vinegar in here.

That's OK we're sorry that it smells like Beef while you are trying to eat so healthy.

So we kind of chit chat and I joke no worried you'll all probably end up in my blog :) about the meanies at work who continued to eat and talk about Portillos right in front of me while I ate my Spinach. Then out of no where my Mother - my own MOTHER says

Wow this bun is really soft...

It really is OK because that bread was probably 6 Weight Watcher points and my entire lunch was probably only 10. And truthfully I laughed. My co-workers have been really supportive sharing tips and telling me when they see Gluten free and Soy free stuff. Even encouraging this blog.

I was so full after lunch I took my grapes for a snack later and didn't even think twice about the Chocolate Cake. The fact that I'm trying to avoid substances way more harmful than fat and calories in the form of methotrexate and that the pounds on the scale just keep coming off are so much better of a reward.

Day 2 - Discovering Almond Butter

Yesterday was much easier as I was not at work. I take a day off here and there in order to rest and since I worked all last week I could feel my pain level creeping back up. In fact I'm still at a 7 and have been for 3 days.

Breakfast: Fresh Fruit Pinapple, Raspberries and Blueberries. YUMMY. I was full until lunchtime.

Lunch:Leftover chickenbreast and a sliced tomato.

The Doc mentioned Almond Butter a as a great food on this diet. I'm not particularly a fan of Almonds by themselves so I must admit I was skeptical. My husband tried it the other night and even the dog was hesitant to lick the spoon - never a good sign. But around 3:00PM I got a little hungry and decided that to try it out. So I sliced up a banana and took 2 tablespoons of the Almond Butter (With flaxseeds and Omega 3s) and DIED and went to Heaven. Dare I say - BETTER than Peanut butter. In fact I had some more about 10PM after my Spinach Salad and grapes weren't enough for dinner.

I also tried a Pure Bar with lunch. $1.50 for a 2" square of Raw, Vegan, Allergan free snacking. No Gluten, wheat, soy, or dairy. I tried the Chocolate Brownie and I have to admit it was pretty good.

Day 2 : Victorious on sticking to the plan!

Allergen Free Diet Day 1 - Mon 2/22/10

So I took a little shopping trip to Trader Joe's and Caputo's (Market). Ok so I admit I was hungry and reading labels for what you can't have doesn't help so I was a little crabby but what is with people on their phones in the grocery store? I swear this lady was following me. I thought for sure I'll have solice in the Oragnic/Gluten free aisle - but no she showed up there too. And really people - do you have to let your children roam free in a store like Trader Joe's? Do you really want to pay for the $9 jar of Almond Butter when they knock it off the shelf and break it? (Which is why I opted for the $6 plastic jar).

So I worked Monday and took my lunch to work. The doctor suggested I just keep a lunch bag full of the foods I can have and graze throughout the day. Problem with that is we aren't really allowed to "eat" at our desks so I kept just a handfull of blueberries and some cashews up with me.

I was always amazed at people who could just have a tiny bit of salad for lunch but I had spinach with tomatoes and raspberries and some leftover grilled chicken and I was pretty stuffed. In fact I didn't finish my pineapple or carrots I brought with.

I've found that dieting has always made me get creative. So I took some chicken and seasoned it with poultry seasoning and marinated it in balsamic vinegar. Grilled it on the George Forman and according to my Husband it was the best chicken I've ever made. We ate that and some salad and I was pretty full.

I got a little hungry later and pulled out my Rice/flaxseed crackers that are wheat and gluten free to eat with some Hummus. But there was some cake sitting on the table.....I had a little taste. :( Tuesday is a new day.

Mission: Wellness

Welcome! I'm starting this blog at the suggestion of my friend Karen - with the assumption that I'll have at least one reader! HA! I figure if I am journaling/blogging then I have to stay accountable to this path of wellness that I'm on.

I'm on a path of wellness because I have been very sick for the last year. I've been diagnosed with Neurosarcoidosis an autoimmune disorder for which there is no cure and no know cause. I have a lesion (growth) in my brain near my brain stem that is pressing on my Trigeminal Nerve which has caused an unbelievable headache/head pain for more than a year. Literally every day for the last year I have had some sort of headache on the pain scale between a 4 and a 9. Always in the same spot and no amount of pain medication does anything for it -in fact they won't prescribe it to me since that tends to re-bound the headaches.

Perhaps I'll write later on my journey over the past year with all of the testing and medications I've been on but at this point conventional treatment of Prednisone hasn't worked for me. In an effort to leave no stone unturned, I took the advice of my Mom and went to see a Holistic MD who helped a friend of ours. He suggested I might have Leaky Gut Syndrome (and at this point I'm no longer surprised that there is something called Leaky Gut as I was actually tested for Cat Scratch Fever) and explained that overtime eating these foods that are common allergens confuses the immune system and can lead to things like autoimmune disorders. I had already heard something similar from our Chiropractor who explained that on a cellular level our body doesn't need anything more than the nuts and berries we ate as cavemen (this is a very abbreviated version of her talk it was very informative and I learned quite a bit).

So what are common allergens? Gluten, Soy, Dairy (especially cows Milk), and Wheat. I also shouldn't have Corn, Potatoes, Lunch meat (due to the Gluten), Beef, Peanuts, and Oranges. Along with the usual listing of refined sugars and high fructose corn syrup on any diet plan.

To some this might have been really shocking but I felt I was already halfway there. I had started following Weight Watchers already and had lost 8 lbs so I was already eating lots of lettuce and vegetables and fruit. So I took what the Doc had to say along with the list of supplements I should be taking and brought them with me to see my Sarcoidosis specialist at the University of Chicago - We'll call her Dr. S.

Dr. S had put me on an immunosuppresant and a steroid and for the four days I was on it my headache went away - instead I had a 103.5 fever and a NASTY cold sore. She was so concerned she actually cultured it and took my blood levels in the office. She told me I had to come off the medication and started to discuss chemotherapy (which in my plan is our last resort). I mentioned to her this Immune boosting diet and the Holistic doctor and she immediately agreed this was a better way to go. Boost my immune system naturally and in 6 weeks try the drug again to see if I can handle it. She asked me what changed and I told her "I joined my own team."

I have a team of doctors and professionals (6) who I see on a regular basis to try and deal with this illness and its complications. And while I might have been coordinating the "Team" it took a while for me to get healthy enough to feel like I could choose to help them with my care. I was a compliant patient but now I'm an active participant. Wellness is a choice as our Chiropractor says and I'm choosing to help these doctors make me well again because quite frankly living this way isn't the life I imagined nor one I'm willing to settle for.

So I'm choosing to RESTORE my body to wellness and I'm going to share my STORY with you. I'm not promising that I won't fall off the allergen free wagon from time to time but perhaps if you've known someone like me (or know me) it will help you to understand what its like to be chronically ill.