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April 27, 2012

Wow, Was I Wrong! Some words of wisdom from me.

So today is my birthday, I am 24 years old.  I seriously cannot conceive where time has gone over the last couple of years (I think I struggle with the last 2 years because I was heavily medicated and asleep for the majority of this time.

Ok, so I am a typical oldest child, A-type personality, perfectionist.  I had my life planned out...well sorta. It was really important to me to be a young mom.  I found the love of my life in middle school and I knew I was going to be a young bride, as well.  I wanted to go to college and get my associates degree from a local community college followed by two-three years at the university, which was great.  I imagined I would be establishing connections for my career job. By 23 I would graduate with my Bachelors degree and hopefully have money remaining in my college fund so I could do some traveling or put a down payment on a house. By 24 I thought I would have my first kid or at least be pregnant.  My crystal ball of dreams and mile markers just didn't happen.

Instead my life has taken a very different approach.  I heard a long time ago, "we plan and God laughs" and I feel like that phrase is so true with where I saw my life!  I did have a great path into my career without a degree to support it. I do have two associates degrees and zero bachelors degrees. I also have no baby (yet), I but I have a ton of experience of fighting a chronic disease.

Oh, here are some things I learned in my 24 years.

1. When you fill out your insurance elections ALWAYS pay into short term and disability. My payment was cheaper than a cup of coffee taken out of my pay each paycheck.  Now I can collect some money from a private insurance agency because I am on disability. It is WAY worth it. I hope you never have to actually collect on it, but in the rare case that you find out you have a chronic illness...I hope you have some financial backing from life insurance.

2. I still am not entirely sure what I want to be when I grow up. I think people should stop asking everyone this question...especially high school seniors!

3. Food from Whole Foods or any other fancy store does not make the food healthy, learn how to read food labels and try to avoid foods or preservatives you cannot pronounce.

4. Love your parents and tell it to them often.  It is extremely challenging when they have to watch their children be so sick and miserable. They need to hear it just as much as you do.

5. Black Friday is the most fun day of the year

6. I married the best man in the whole wide world for me!  He is perfect and this disease has shown me his dedication and love even more.

April 23, 2012

A New Perspective

I had an appointment today with a new specialist.  This specialist works with my Lyme specialist to complement my Lyme treatment and look for how treatment is going on a homeopathic level, not a traditional medicine level.  Back after my diagnosis, November 2010, I choose my Lyme doctor by my family members reading biographies and treatment philosophies of Lyme Literate physicians all over the world.  I chose my doctor and his practice based on his beliefs and treatment protocol. I believe in him and his protocols 100% so this past January 2012 when he told me I wasn't responding like he wanted and he needed to bring in another doctor to help him I was totally okay with that.  I trusted him again and have been trying for many months to get in with his ideal practitioner to help him with my case/treatment.  So today was that appointment!  I have been super anxious, scared, excited....pretty much every emotion because I have so many eggs trusted in this basket.

Justin, my mom, and Janice all accompanied me to the appointment.  Everyone in her practice is super friendly and are so kind.  I was having an extra bad day so she saw me at my lowest low.  She was happy to see me at this low stage because then she would know how much of an improvement I am actually making.  I have four new priorities: fighting Lyme, Bartonella, parasites and a fungus in my gut.  I knew that my body was not getting the nutrients I was putting in it, but I didn't know exactly why.  The fungus is working with the parasites to starve my poor body!  I am so glad she had tests to run to figure that out! The doctor today was so great because when she looked at me she did not look at me with pity...she looked at me with hope.  She treats patients equally sick as me and even sicker.  I am not the sickest patient she's ever treated and lately I have been hearing that a lot from local practitioners (lymphatic massage therapist, colonic hydrotherapist, Ayurveda practitioner, etc)!  She has seen people worse off then me get better! She also told me that she has seen her best successes when I have her with my Lyme specialist working together to cure this disease (so I have the best two people, in her opinion, already taking care of me)!  That was seriously the best thing ever she could have said.

Then, to top it off I asked her my primary goal: "Do you think I will be able to get better enough to safely have a baby?" I winced as I waited for her to answer, anticipating her to say no.  Instead these refreshing words came out, "It will take a while, 1.5 to two years of a lot of hard work, but absolutely, you will be able to have a baby." So my timeline has been adjusted. My treatment continues.  My attitude is refreshed and renewed. I will come out the other side of this disease. There is hope!  A lot of it!

As a nice boost as I was paying and leaving her office another patient came in and someone in my family started up a conversation with her.  It is such a small world because when I was in Disneyland at Christmas time I spoke with her on the phone (Sadly, I do not remember this at all...but Justin does and so did she). She told me how I was so encouraging and gave her the contacts I had for my Lyme disease specialist.  She is doing WAY better and she told me "You saved my life."!  I don't think it counts because I don't remember the conversation, but I know God has me in this place for a reason and all these things are happening on His timeline.  I have done great things that bring glory to Him even if I don't remember them.  This woman was at rock bottom and I gave her education, resources and hope so she could get better.  Since then, her mom and daughter have also been diagnosed with Lyme disease and are doing great with their treatments too.  All in all, I praise Jesus for today. He is where my hope rests. Thank you God for a wonderful, exhausting and expensive day. I trust in you and give all glory to you.

April 22, 2012

Double-Edged Sword

Having a diagnoses of Lyme disease is seriously a double-edged sword.  One one hand, I can have days like today where I dress nice, smile, laugh and enjoy my sisters bridal shower.  I small talk with friends and acquaintances whom I haven't seen in many months or years. Some of the people I saw today didn't even know I had gotten a diagnosis and I didn't tell them.  I can "pass" as a normal, healthy human being. The double-edged sword is that I am extremely sick and suffering behind my "fake it 'til I make it" disguise.  People can't easily recognize that I don't feel well. I often envy cancer patients who can walk around with a shaved head.  It's obvious they are in treatment and society as a whole is extra gentle towards those people. It's just a common courtesy. Don't get me wrong, I don't wish I had cancer, I just sometimes wish my invisible illness wasn't so invisible.  It is so hard having someone who has heard I am sick look me in the eyes and say "but you look so good!" Seriously, those words hurt so bad because all my pain, is hidden beneath the skin and I have to verbally say, "no really, I'm super sick. I do five infusions a day and many days I don't even get out of bed. This disease is really rough, but I'm pushing through". It's like I have to convince people. It's so frickin' stupid! I'm sick with Lyme disease. That is punishment enough. I don't need to convince you to believe me too!  I'm glad sometimes that I can melt into society and look normal, but normally I just want people to look past my dirty yoga pants, day old makeup, my greasy hair and be happy that I made it to see my baby sister off to prom.

Just because someone doesn't look sick does not mean they are healthy.  There are many illnesses that are called "invisible illnesses" for a reason.  I have a big appointment tomorrow that has me freaked out a little. I am so nervous and anxious and I am over exhausted.  Please keep me in your prayers tomorrow morning as I meet with a new specialist. 

Good night.

April 16, 2012

Late Night Thoughts During My Last Infusion for the Day

I was just getting my last infusion for the night and noticed my adorable pup Diego passed out in his bed.  I tried to sneak up on him to get a picture because he looked so cute, but my IV pole on wheels was too noisy and woke him up.  It's not like I startled him, but instead he looked at me, if looks could kill, I might be dead! I love Diego so much and he has such a fun personality. I love that he greets everyone in his "inner circle" with an offering of his most prized possession.  He will run around the house searching for just the right gift to greet us with and he will continue running around in celebration wagging his curled tail in a little ball bobbing back-and-forth until we say thank you for his gift (a stuffed lime green toy or a slobbery bone).  It takes a while to make it into Diego's inner circle, currently his only members are: me, Justin and both my in-laws who spoil him with cheese every night when we go upstairs to their apartment for dinner.  I find it hilarious that if it is 7:04pm and we haven't headed upstairs yet he will come sit and stare at me with little whines telling me we are late and it's time to go upstairs and see Grandma and Grandpa.

One of my favorite things about Diego is he will only play with toys that are lime green.  Seriously, we have bought other colors and he doesn't care for them.  Not even the $20 Lightning McQueen that I got him for Christmas! He couldn't care less about my expensive toy for him!  He takes really good care of his stuffed green toys and treats them just like a toddler with a blanket or teddy bear...sometimes I swear this dog is part human...or part cat depending on the day.  But most of all, I love that he is my dog. If I am having a rough day and spend it in bed sleeping, Diego will do the same. If I'm energetic and want to go out he is just as excited.  On any given day you can tell what kind of a day I am having by looking at him!

By the way, Lyme Disease awareness month is May (I can't believe it is already almost May)!  I think Diego's love for lime green toys is him showing support for all the Lymies out there! Okay, maybe that's far fetched, it's a cool color, not just the color designated for Lyme awareness. Bottom line, I'm in love with my pup and he brings me so much joy! Notice his dragon/alligator, the current favorite stuffed animal. He has arranged him perfectly in his bed to snuggle with him. Seriously, he did it, not me. This Kodak moment makes me giggle. 

**Correction, after many responses from friends and family I learned that Diego's exclusive club is not so exclusive. His foster parents, Chris and Courtney are in, my sister Molly is in and so is her fiancé Brandon. So now that that's clarified I hope you all feel better being part of his "inner cycle". lol

April 9, 2012

What Sent Me to the ER via Ambulance

About a month ago I finally decided I needed to be more proactive about my birth control methods.  My doctors had been very clear with me that the oral pill I was taking was likely ineffective because of all the antibiotics I was on.  I had so many fears of getting pregnant and passing on this disease to my baby or that the baby would be born with three arms because of the high doses of drugs I take.  All in all, it was a disaster waiting to happen.

I am covered under amazing insurance and they have paid for nearly everything...except, because they are Catholic, birth control is something that is not covered and therefore is paid for out of pocket by the patient.  After months and months of praying and research and talking it over with my doctors, friends and family I finally decided I would get the Mirena IUD.  I scheduled an appointment and my local Planned Parenthood and all was well.  The device was a little tricky to be inserted because I have never been pregnant before so my uterus is smaller than they prefer it to be.  It was painful, but it didn't last long. After the procedure, I was sitting up talking with the doctor about care and what to expect...when all of a sudden I started to feel really bad.  My vision was mostly black and the next few minutes I have no memory of.  The doctor who did the procedure was still in the room with me and she laid me back as I had, what she thought, was a seizure.  The entire staff of Planned Parenthood came into the room and were on the phone with 911.  I woke up with many people leaning over me with a lot of panic in their voices.  I wasn't sure what happened but the doctor reassured me I had just had a seizure and the ambulance was on the way. She kept asking, "has this happened to you before?" and my answer was of course "no". I was a little shaken up and pretty confused.  The paramedics arrived fairly quickly and got me out of the clinic and into the rig. As a side note, my friend Fania was with me to get my IUD but she had stepped out to feed her baby in the car.  She told me all the ambulances and firetrucks pulled up and she knew they were there for me! Of course! lol!  So I am being wheeled out by the paramedics who have no idea why I was at planned parenthood, I'm sure they thought I had just had an abortion or something.  That was not the case at all! But to top it off and make this situation even more embarrassing the doctor yelled as I am being wheeled out the door, "Nothing in your vagina for a week!" LOL Thank you for that! *Face turns bright red*

I got into the ambulance and took the 1/4 mile trip to the hospital.  The short ride gave me a medical bill for $944!  As I'm in the ambulance I was talking with all the men and trying to score Justin a job. Anything to distract from the awkward comment from the doctor only moments before.

When I got to the ER the staff was most concerned about my brain and my heart. They did some blood work, EKG, and brain scan with everything turning out normal except I was massively dehydrated!  I pumped in a few bags of fluids and they sent me home in only a couple of hours.  If I haven't told you, I love Saint Mary's Regional Medical Center.  They provide the best care for their patients.  I used to work for them and I just have so much respect for the care they provide to all patients. I don't love going to the hospital as a patient, but if I ever do go, Saint Mary's is the only place I will go.

Oh, as it turns out I did not have a seizure. Instead I had a syncopal episode, basically I passed out.  But, I learned that because the doctor called 911 my insurance should have to pay 100% of the ambulance bill. *Fingers crossed*

I hope I made you laugh. This was such a comedic/scary day. But for all my readers I don't hold anything back! I do have to admit, that I needed time to pass a little bit before I wrote about this instance though. I was so embarrassed, but now I just laugh!