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May 30, 2012

They're Melting!

I am on round two of taking this awful medication for killing parasites.  The name of the medication, Vermox, sounds like an evil character in a movie. I feel like it needs an evil laugh to go with it! I take it twice each day for three days and then give my body a break for 10 days.  I'm convinced this medication is playing the villain inside of me because it is really rough on my stomach. On the plus side, I feel like parasites that don't belong inside of me are dying! So that's exciting.  Here is a quick video clip what I imagine is happening to the parasites every time I take the Vermox. I keep thinking of all the parts in this clip that I can relate to my theory, but then I feel like when I was back in high school or college writing and assignment for English and drawing all of these conclusions that were completely far-fetched and basically BS.

So the Vermox is awful and leaves me with three miserable days of stomach cramping, extra nausea on-top of my regular nausea. This diagram made me laugh, please excuse the profanity, but seriously, just be glad I didn't get into all the symbolism crap that's been cycling around in my head!


May 27, 2012

My Biggest Fear and My Greatest Dream

Last week I went to the To Write Love On Her Arms event and I walked away with a very important message.  TWLOHA has spent this year encouraging people to address their biggest fear and greatest dream.  I'm asking you to do the same.  With my blog I am being 100% transparent and I want you to know this space is safe for you too.  You don't have to put your name....just put "anonymous" or make up a name....that's not really what this is about.  It's about recognizing that each of us are living a story and when we address our biggest fears and dreams it makes them not so scary or far off. 


Okay, me first, my biggest fear is that this treatment will be all for nothing.
My greatest dream is to travel the world with my husband.  I have told many people that I want to be a mom one day, and while that is a big dream of mine, it is not my greatest dream.

I asked my husband Justin and he shares my fear.  He is afraid that I will not get better. Funny enough, I asked him across the room what his greatest dream was and he said he wanted to travel the world with me when I am better.

I love that we are unified! God has blessed me with an amazing husband who has kept his vows.  He cares for "in sickness and in health". He makes it possible to continue living my story each and every day. Without Justin I'm pretty confident I would have given up a long time ago.  I would probably be one of the statistics about Lyme and suicide.  I'm glad to say I'm here. Living my story and I WILL NOT GIVE UP! 

So what about you?  What is your biggest fear? What is your greatest dream? You can see examples at http://fearsvsdreams.com/ 

May 25, 2012

She's Been Gone for Five Years

It's been exactly five years since my Grandma Patty passed away.  Growing up I don't have memories of my mom's mom because she died when I was young.  My Grandma Patty was different.  She played a much more active role in my life, especially as I was older.  Around 9th grade (still in the middle school for my school district) she bought a house close to my school and her and her husband Bill would pick me up often, feed me and then drive me to gymnastics multiple times each week.  Grilled muenster cheese sandwiches were our favorite.  We would laugh and talk about anything and everything.  I always felt like I was a different person around my grandma, in a good way, like she brought out the best in me.  She was a very generous woman supporting whatever cause I was into that week.  She drove me nuts because she always patted me on the butt...I would be annoyed, but it was just what she did.  Also, when I did something she didn't approve of she had a specific way of saying my name extra nasally, now even thinking about it makes me feel like I'm in trouble "ELizAbeth".  It's funny the things I remember about her.  

She had known me when I was going doctor to doctor to figure out what was going on with my body.  She would see my pain, sadness and depression that came along with not knowing.  

I remember the last day of my Grandma's life in a few clear memories.  She had just returned from a cruise around the world.  It was like 150 days or something amazing like that, so I hadn't seen her in a while and when she got back to Nevada she was very sick. I remember I was at work (for a hospice agency, nonetheless) and told my boss I really needed to leave because I thought she was going to die.  My boss totally understood and let me off early to go be there.  Unfortuneately, I was right, that she was going to die that day.  When I walked into her hospital room there was some other family in the room and a balloon that said "Happy Birthday".  You see my Grandma was somewhat of a queen and loved having people cater to her every need.  I think in a small way she choose to hang on until her birthday to also let it be her death day - I can see it in her mind as the day being extra special.  When I walked in the room I noticed her doing a strange thing with her hands as she laid with her eyes closed in the hospital bed.  I asked her gently, "Grandma, what are you doing?" She answered something like, "I'm cutting watermelon for the fruit salad...for the party....it's time to go."  Like, I said, I worked for hospice and had heard time after time of people who were about to die say things like, "It's so beautiful there.....I can't wait.....I'm going to see (another friend or family member who had been gone for a long time, we have to pack the car, etc."

When I heard my grandma preparing for her party I was amazed she didn't have us helping her, but also that she was making the final preparations here on earth to die.  So many people find death gross, but to me death is a beautiful thing.  I am completely comfortable around people who are going to die soon or have recently passed.  

Around 6pm nothing had really changed for Grandma and my sister's birthday was just the day before...with all the stress over Grandma we kinda skimmed over Amy's birthday. We thought it would be fitting to go out to eat as a family and celebrate Amy for a little while, afterall, Grandma wasn't too exciting in the hospital because she was just resting and had been for most of the afternoon.  After about 45 minutes of being gone, Bill, my grandma's husband got a call saying to come back to the hospital immediately.  My grandma had declined rapidly.  She woke up and was yelling into the phone (held by the doctor, talking to Bill, her husband) "you can put me on the ventilator, but not for long."  Bill could hear this clear as day and understood and respected my Grandma's wishes.  It is very common before someone dies to have a "last hurrah" and this was hers. We were all gone for hers. I'm pretty sure that's the way she wanted it. We raced out of the restaurant and back to the hospital and by the time we got there she was gone.  She was put on the machine to help her breathe to see if it would help kick her body back into gear, but it didn't and she was gone.  We stood around her, held hands and sang songs (my family is extremely musically talented, except me, but that's another story).  We stood around her and slowly said goodbye one by one.  I held her hand until most of the heat was gone and just the shell of her body remained.  It was a beautiful moment.  She was not in pain, she was ready to go, she had the love of her family around her and (in hospice terms) she 'sprouted her wings' on her 82nd birthday.

Thinking back the last thing my Grandma asked me, was are you happy?  She knew all the pain and struggling I had been going through but didn't know how to help me.  This was in my freshman year in college and I was struggling really bad with depression and not having enough energy to keep up with my new friends. I felt left out and was often very sad. My grandma adored me and I adored her.  To see me sad and hurting with no known reason was really hard for her. She was so worried. I lied to her in my last conversation with her and told her I was happy.  I can say I am happy now.  I have a reason and a name for all the pain and sadness. Lyme disease. 

Estee Lauder Intuition is my Grandma's signature scent.
A few months ago, when I was packing up my room at my dad's house to move back to Reno I stumbled upon the most wonderful thing.  At first I got a whiff of something and couldn't figure out what I was smelling.  It instantly took me back to happy thoughts of my Grandma.  Hidden under the guest bathroom sink was an almost full bottle of the lotion my Grandma wore everyday.  What a special treat.  I can now smell that lotion and remember her. If I remember correctly, this smell has been discontinued so my bottle is very very special (PS if any of my family would like me to scoop some into a smaller container so you can have her scent, I'd be happy to share).


If Grandma Patty was still alive today we would celebrate her 87th birthday and we would rejoice over the progress of my treatment.  We would be so excited for Molly to be getting married soon and for her recently graduating along with Amy graduating high school.  I'm confident she would pat me on the butt and make me roll my eyes, followed by her disapproving tone to say my name that only she can do. I would buy her an orchid to add to her collection because she loved to have her house filled with them.

I miss you Grandma. I love you. I wish you could see how strong I am fighting to get better. I wish we could have a muenster-grilled-cheese sandwich together today, but mine would have to be without the butter, sourdough bread, and cheese because I am off all of those for my treatment....so I guess I'll wish you happy birthday and watch you eat your delicious muenster-grilled-cheese sandwich. ;)

May 24, 2012

New Way to Lose Weight and an Update On Our Cleansing

This morning I got a call from my home care nurse (seriously she and her entire team are amazing...I know because I used to work for them!) and I was right, I have a UTI.  Three-cheers for knowing my body!  Lol!  So my primary care doctor ordered me some antibiotics to hopefully help that infection go away.  I am not a stranger to the UTI because it makes me anxious and uncomfortable all the time so when that feeling returned, I had a sneaking suspicion.

With all this stool talk I thought I'd lighted the load.  Ha ha what am I, a 7 year old boy!?!
Then I had to boogy my way down to a place in West Reno to get my every two week colonic.  I really liked the set-up and the woman, Nadine was super kind.  It's an open-gravity colonic so it's kinda personal, like getting a PAP and the obgyn, but slightly more dignity than that.  The way she works, is she has you drink two different nasty drinks 5+ each in the 24 hours before you come.  I have already had a hard time eating enough meals each day and getting in my proper nutrients, so I really struggled with this.  I sorta paused my 30 day cleanse to do this 1.5 day cleanse for my colonic, just so I could feel someone normal. (Oh, if you decide you want to see her you should call her and get all the components of the drink she will have to do 24 hours before your colonic and it all costs about $70)

The colonic was great.  I have had multiple colonics in the past and this was by far the most comfortable. I was super relaxed and I know I had stuff come out of me that had been in there a long time.  I have no doubt that if you are looking for a "real cleanse" and have a little money to spare you could absolutely lose weight by letting your body detox and doing multiple sessions in a row.  If you are interested in seeing Nadine at her office and make sure you tell her I sent you.  You could be a brand new person for ($70 for the drink mixes, $75 for each colonic--you will likely need 5 or so) So I guess under $500 and you could be a skinnier, detoxified more healthy you!

She really emphasized that our digestive tract is where all health lies. This is the same in Chinese medicine and various other schools of thought. Many people who have done proper colonics (the way she does them) can get rid of diseases entirely and loose excess weight that has stayed on for no reason.

I had a little bit of a disagreement with her, because I don't think she understands how fragile my body is. I'm being beat to a pulp (by choice and under the watchful eye of two excellent specialist) and my body is unable to handle what a "normal" person could handle.  I can't even do a raw diet or juicing because my belly is so fragile! She really wanted to see me multiple days in a row, but that just isn't feasible for me.  After my one colonic and only getting in 5 drinks total, instead of the 10 minimum (2 of each type) she was skeptical if I would produce any results.  Well, let me tell you, I surprised her! She was able to identify heavy metals that came out...I was really looking for a parasite or ten, but didn't see any. I even plugged her machine, which she was shocked about.  It was a simple fix and no big deal. I did have really good results considering I had so few drinks in me, but I felt overly detoxed.  Typically she likes to do multiple sessions back to back and keep the body fasting or eating soft this entire time.  I am already struggling to get the nutrients I need to get all my pills in...so for this big commitment I think it will have to be when my medication regiment load lightens and I get a little strong.
The comfortable colonic machine I used

Her belief is that you can not overly detox yourself, but I have learned over the past year and a half that, yes, I can over detox myself and it costs me a lot of time and energy to return to a more normal state.  All, in all, I will absolutely go back to Nadine, but it will only be for my prescribed one time every two weeks.  For those of you that are relatively healthy, and want to find a great way to feel better, check out Nadine and what she offers.  She is so kind and caring and wants to see everyone get better.  I think my interactions with her will be slower and much drawn out even though I understand her thinking with clearing out the digestive tract completely before any health can occur.

I understand that cleansing the colon fully is essential for optimal health, but I also know that my poor body is really fragile and can only handle so much at a time!  So I am trusting my body, I know it better than anyone.  Here is a picture of the "Cadillac" of all colonic machines.  I promised you no nasty pictures during my cleanse, but her website does feature some of "what came out" from various clients.

So my husband is still on his cleanse and going strong...I don't think he has missed a dose yet. I think his cleanse is relatively mild because he hasn't mentioned much.

As far as our anonymous cleanser, she said "I can't believe I still have stuff coming out of me!"  Poor anonymous cleanser, sounds like her body really needed to get rid of a lot of junk.

Oh, and I forgot to mention this was our one and only big outing on his birthday! I cried an hugged him and said I am so sorry this illness has turned me into doing disgusting things...I want to be a good wife for you, especially on your birthday!  He grinned and said, "It's okay, my birthday's not a big deal and we are in this for the long haul". I really did marry an amazing man.

Once again, I have received no benefits by writing about my experiences from today. I am not a doctor and I highly recommend you consult with your physician before starting anything new.  


May 22, 2012

I'm supposed to take what? When? Shoot I'm late.

My Lyme diagnosis and treatment has left me with a lot of mental fogginess and forgetfulness.  With new medication changes almost every week I have a lot of room for mistakes which is bad because it will only prolong my treatment.  I had one goal in mind - get in all my medication and do it at the same time everyday.  This has been a goal from day 1, but now being in Reno with less people around all day I needed some additional help because my check-off list wasn't working any longer.  It seemed like everyday I was so frustrated because I couldn't get my medications in at the right time or I would forget them completely.


I searched the internet and found all sorts of medication reminders, like fancy pill dispensers with alarms on them, adult caregivers that are hired to come and take care of you in your home (like preparing meals and reminded you to take your meds and such), but nothing was really offered to help me remember when to take my pills or infusions. Once I remember, I can administer all the different medications without any problems.


In addition to medication reminders I also needed reminders for when I needed to eat.  I found a subscription service called snoozeter.com.  I think it was created to help college students not miss class or business people who travel a lot. But nonetheless, I love this program! It is worth every sent of the subscription to help me take my medicine on time.  I am most excited about the customization I can setup on their website.  The site gives me the option of a reminder call/text or a wake up call.  The reminder feature will either call your designated phone one time and leave a message saying what you need to do at the time.  The wake-up calls are great too because they will continue to call until the phone is answered.  This is great for me for my midnight medications or my 2pm meds because I am often asleep at that time.  I can go online and edit the times I want to receive a reminder or wake-up call.  Seriously, this is awesome.  I'm pretty sure Snoozester wasn't designed to help people with medication reminders, but it is working great and I highly recommend this service if you have a hard time remembering what you need to take or what you need to do at continuous intervals. Oh and my favorite feature of all is when you get a wake up call or a reminder phone call it's always from a different character!  They are funny and make waking up easier!



























  
Once again, I was not paid by anyone or compensated in anyway to tell you about the tool I use for my medication reminders.  I simply wanted to share my wonderful find and save you some time and effort. Give snoozester a try with their free trial. 

Update on the Cleanse

Well, it is 4:38am and I am wide awake feeling like I could 'toss my cookies' at any second.  I had this problem around 8pm last night but was able to take some meds to calm down and go to sleep.  I thought it would work the same when I woke up just a little bit ago. I was wrong. My belly is really upset and nothing I can do makes it better.  I even broke down and had pepto-bismol because it usually really helps me.  I try to stay away from that one usually because in makes one of my drugs not work as well.  I am miserable with stomach cramping, body aches and a horribly upset belly.  I have no idea if this is from something I ate or if it related to the cleanse.   It's a mystery and it's awful.

My husband is doing great on his cleanse.  He hasn't noticed very many changes except some mild stomach cramping. I'm so envious of him!

Oh, and our anonymous cleanser is doing pretty well also.  I believe she is on day 3 and she is already having to spend extra time in the bathroom to get all the crap out (pun intended...he he).  My instincts are that she will be one of the lucy ones to lose weight.

Since this blog is kinda boring, I thought I would spice it up a little bit with some crappy pictures inspired by one of my favorite blogs: http://crappypictures.com/


Something about crappy drawn pictures makes me smile.








May 20, 2012

TWLOHA Came to My Home Town!

I have been writing and talking for a while about how excited I am for the national organization, To Write Love On Her Arms, to come to Minden, NV!  Self-admittedly, the non-profit organization has a strange name and is kinda hard for people to understand.  With that aside, this is am AMAZING organization who bring hope to those of us who struggle with depression and even focus on suicide and self-harm, and always try to point people to resources that will help them.  I have struggled with depression for a long time...I think it goes back to not being diagnosed with Lyme for so long and having the feeling of not fitting in with my peers because I was so exhausted and so down.  Getting my Lyme diagnosis did not make my depression go away, but it helped me to understand the source of it.

My baby sister is a senior in high school and coordinated the event for TWLOHA to come to Minden.  Don't think of me as a bad sister but I did not know that SHE invited them! Oops! I knew she was part of a club rallying to get them here and I was fully supportive with my money and time to make her dream come true.

The day started off very rough for me with some bad news over the phone. My last blog post was in regards to this phone call.  Then I spent the rest of my day having an anxiety attack, crying, getting in a fender bender with one of my bestest friends and then we ended up at the TWLOHA event!

This event was amazing.  People I knew from elementary, middle and high school all saw my facebook post a few days ago and decided to spend their Friday evening with Jamie Tworkowski, Steven McMorran, the DHS Psychology club, almost my entire family, and 250+ other people who showed up because they care about the mission of TWLOHA.  It was an emotional day to begin with and I left the event feeling even more emotionally spent.  It was a beautiful thing to gather together to bring hope and love to people who struggle with depression, self-injury and suicide.

With the bad news first thing this morning, I was at a point I had been many times through my treatment...."no wonder people choose suicide after being diagnosed with Lyme disease. This process is so messy, complicated, expensive and leaves you feeling like there are no other options."  I again had to make the choice to not be a statistic and fight hard to live my battle.  I loved one of the phrases that have become synonymous with "To write love on her arms"...."I AM LIVING A STORY. I WILL NOT GIVE UP."  This is my new mantra and I hope what I've wrote about today will inspire you to find a mantra for your life. Say it often and say it proud <3


That one phrase reminded me that my story is not how I planned it out. I have so many people who are graduating, getting married, having babies, starting careers, buying houses, and traveling all around the world.  I feel like my friends and family are "beating" at life.  It sounds silly now that I put words to my feelings, but it is true.  Well, even though my story is not how I planned it, it is still my story and a beautiful one at that.  I have learned what a devoted and loyal husband I have, how to cherish the little things in life, I have some of the best friends in the world, and I am building lasting relationships with the women in my community group (Bible study).  God's plan for me is bigger than the plan I had for myself. I know that I am loved and forgiven by my creator and in the end this will all be ok. I also learned that all my parents and in-laws are behind me beating Lyme disease 100% no matter what it takes!  I come from a wonderful, large and exciting family who understands when I need to take a two hour nap in the middle of a party or to tell me to stay out of the house because onions are being cut so I don't barf my brains out! Now that is love!


Here are the tweets from Amy, Steven McMorran and Jamie Tworkowski regarding the TWLOHA event.  It simply was amazing and I am so proud of my baby sister. I can't wait to see what else she can accomplish in her life. There were so many other tweets and fb postings, but I picked just a few to share ;)

















Here is Jamie Tworkowski, who started TWLOHA, standing with my baby sister Amy being big goof-balls :D