Monday, October 24, 2011

An Exciting Disappointment

I have a lot to update you on but I am going to do it a little backwards. Some amazing friends put together a fundraiser for me at the Belly Up Tavern in Solana Beach. It is a very cool place and I will give you the details in a minute. Let me start with what happened today. I was forwarded an email by one of the event organizers. The email was sent to the Belly Up from the tv show EXTRA and they wondering how to get a hold of Jessica. They used a different last name but the Belly Up assumed it must be me since we just did my fundraiser. Now I thought it was weird because the only show EXTRA I know of does celebrity gossip type stuff. Either way I kind of freaked out. I prayed that if this was meant to be that I do the right thing with it. I must admit though I am a big dreamer. I mean I don't sit and daydream my days away. But I guess I have a wild imagination and more than once I have spent time planning on how I would spend my lottery winnings, or what it would be like to live in the HGTV house that they give away. I have recently been planning on what I would do with my Publisher Clearing House winnings, however I have yet to enter. So you can see how easily I get myself wrapped up into these ideas and I can get really excited. My head was spinning with ideas on what I would say, what I would wear what this would mean for my family and the Lyme community. So I emailed the rep and gave him my info. Shortly after my email I got a phone call. I answered the phone and was talking to this person from EXTRA. It was obvious very quickly I was the wrong Jessica. They wanted a Jessica that had talked to Prince Harry. (He had been at the Belly Up the weekend before). Very quickly my excitement turned to disappointment. I knew it was a long shot but for about 30 minutes I was on cloud nine.

Onto the fundraiser. I have some amazing friends. I will say that the Fire Prevention Division of the Fire Department is kind of like the "red headed step child" of the family. It doesn't really matter though. My amazing Fire Prevention buddies of the last 11 years have been a big support to me and family. Yesterday was no exception. They put together a fundraiser with a couple hypnotists that work for some local Fire Departments at an amazing venue called the Belly Up Tavern. Although the crowd was small the love and support from my friends and families was amazing. Plus the show was really funny. I haven't laughed that much in a while. It was a great time and I could not be more grateful for the amazing people that God has placed in my life. I would say the fundraiser was a great success and we can certainly continue my treatment for at least another month.It's not enough for me to get to Kansas but I am still hopeful. I am blessed beyond measure. I have a lot of thank you cards to write.

Now for a treatment update. Well this wonderfully expensive IV antibiotic has been given me a little bit of a rough time. I have heard some good things though and been encouraged to keep it up as long as I can. I will start by saying my first month order from Target got screwed up and when I went to pick it up they told me that it was $4000. How can there be that much difference between brands and generics or whatever. So they had to reorder the right stuff which only took a day and I got 30 doses for the bargain price of $1427. My doctor is still searching for a cheaper place to get it. Totally praying we find that before this month runs out. I went in for my first day a few weeks ago and was in for a little bit of a surprise. First off this medication is bright orange/red. Perfect for Halloween I guess. I found it fairly quickly it changes most bodily fluids that color. (TMI I know) The funny thing is, it may change my tears colors as well. My husband has been trying his best to make me cry to test that out. Wonderful! No such luck yet. The other surprise is that is has been hard on my stomach. I assumed with it being an IV it would bypass my gut but no such luck. So extra probiotics have been in order and it seems to finally be settling down. I have felt fairly bad for the last few weeks and I think it is about time for my lyme flare so I think I have been feeling pretty rough for about 6 weeks straight now. Some old symptoms are back. I have continued with some bad twitching/seizure episodes, the creepy crawlies, constant nausea, needing to nap, insomnia and some other stuff. Plus I have had some new symptoms like daily headaches and my sound sensitivity is getting worse. Even white noise type sounds hurt my ears. So that has been a little aggravating. Plus for about the first 5 days, my IV's were taking about 2 hours. I discovered I can handle a higher drip so I now can get it done in about an hour. My skin is not happy about my bandage though. No blisters yet but I am worried that having it on there everyday with only about a 24 hour break is not going to work so well. Time will tell.

I got to attend the San Diego Lyme Walk with my mom, two daughters, and my friend Dawn. That was nice because I got to meet some other Lymies in person that I have been chatting with on-line. I also got to meet some new Lyme patients in my doctors office. All I can say is there is way to many people with Lyme. At least 9 new patients getting IV's just since I took my little break. From a mom whose 14 yr old daughter is getting a PICC line and has had a really rough time since she was 10 to a mom who was just diagnosed, is in a wheel chair because of it, has had it about as long me, and found out she gave it to her 20 yr old son while she was pregnant. Then there was the family I met today. The sweet man must be at least in his 70's. He was diagnosed with Parkinsons after some health problems the last 5 years or so. The couple is from South Dakota and staying with one of their children while he gets treatment. They have been for here since May. It just breaks me heart but we a group that really supports each other. There was 5 other patients getting IV's during my first one with the new abx. They all wanted to know what I was on and some of them are headed this direction. The other day I got in and out early but there were 9 people with Lyme on the schedule for IV's. Very sad, but we keep each other entertained in the "IV lounge".

On a different note I got to help out a food packing event with an amazing group called Friends and Family Community Connections. My family has been involved with this local non-profit for a number of years. My dad has gone to Tanzania Africa two or three times and helped build schools for the children, bring them food (that is who the food packing us for), etc. I am so proud of him. So we got to help at another food packing event this weekend and I was reminded how much I like helping people in need. I have decided to try and spend some of my "free time" volunteering in ways I haven't really been able to before. I am really excited to see what opportunities I have to help others. It will certainly help me stay positive and not focus on my illness so much. I am looking forward to helping at Operation Christmas Child at our church next weekend. KLove radio will be there and it should be a great time.

I'm going to end with a plug for I saw their booth at the food packing and took the following pledge. I encourage you to check them out. I believe in the power of a positive attitude and possess the courage to cause positive change. I will exhibit humility when I triumph and strong character when I fail. I will begin every day with a sense of gratitude for my gifts and the desire to use them to their fullest. I will end every day with the satisfaction that I gave it my all. When I fall short, I will respond with integrity and determination to improve. I will strive to inspire others to adopt a positive attitude as I commit my talents and influence to have a positive impact on the world I touch. I Am Always Positive!

Friday, October 7, 2011

A New Normal

It has been a week and a half since my last day in the office and I am still trying to settle into my new life. What my new normal will be I am not totally sure. I guess it will take a little while for everything to fall into place. So much depends on how I feel and some of it depends on money. The good thing is I will have the time, when I feel good, to volunteer. I am so excited about the opportunity to help other people. I started today by volunteering in my daughters kindergarten class. That is always fun. I already have some other opportunities showing up. I guess I will see where things lead and just take it one day at a time.

The silver lining in my job ending was the timing. I am getting my butt kicked. New symptoms have shown up and old symptoms are back. I guess I didn't realize that my temperature issues had left for a while but with cooler weather settling in, I am once again finding I can't regulate my temperature very well. My hands and feet and cold most of the time. So cold in fact that I have to take a hot shower or bath to warm up. The problem becomes that I get so cold so I jump in a hot bath and an hour later I am sweating and can't cool off. Dealing with frozen food once again causes me excruciating pain. My joints are cracking and popping with increasing frequency. The muscle pain, weakness and creepy crawly feeling is back. The ringing in my ears is worse. I have muscle spasms everyday. I now have what seem to be tension headaches everyday. The list goes on and on. Very frustrating to say the least. Oh my insomnia is coming back and I am sleeping during the day, almost everyday. At least this past week I have felt almost as bad as I did during my worst time last year. I am not different than almost any other person with Lyme out there. We all seem to go through the same thing. You think you have turned a corner and then BAM you are knocked on your butt once again.

I saw the doctor yesterday to get my port flushed and to check and see where we were on this IV antibiotic deal. He still really wants me to take it so we are continuing the search for an affordable source to get it from. He is currently trying to work with an Indian Reservation back in the Midwest to try and get it. In the meantime, my parents decided that they didn't want to wait for me to start this and that we would find a way to pay for at least one month of this med from the pharmacy. By God's grace some amazing friends were able to pull together some money and although it would have covered 2 to 3 months of meds from Mexico we have ordered it up here in the States. Some came in today and the rest should be in on Monday. It looks like the month will cost us $1430. That is about $600 less then the other pharmacies up here but still not cheap. Especially if he wants us to do 2 to 4 months. At the appointment we discussed doing this new IV med called Invanza. He really wants to finish with a few months of that. However that med is more expensive at about $70 bucks a dose. Again, 2 to 4 months, IV everyday. So once this process starts I could have daily IV's for 4 to 8 months. God help me. That also means 2x a week to the doctor. That adds to the gas bill for sure. Maybe I need to buy a scooter. Haha. That would so not be smart. Anyways, so the doctor says, if you guys can pull together about $10,000 that should be good. I almost laughed out loud. I just have to remember I serve a big God and things are going to work out the way they should. He has already done some amazing things and will continue to do more I am sure. It makes me want to set my goal at about $20,000 so I can also try to go to Kansas. Just giving to God. He knows what I need to do and how this will work out.  We did discuss a little more about all of those viruses I tested positive for. So basically I have all of those bugs in my system. There isn't a for sure way to test if they are active  or not but they can become active if my immune system goes in the gutter. So I am praying that I can hang on and not reactivate any of those. I also had another blood test come back since my last visit that showed my inflammation levels are high. It is the C4a. Even though it was like double the normal he has seen much higher. That level probably makes sense for how awful I have been feeling. I also finally got a prescription for some pain meds. I went very mild with 400mg ibuprofen. I can double up if I need to. Most days I take nothing but there are days I need something. I was so hoping to not add pain killers into the mix but some days I will have too. The plan now is to start the new IV med on Tuesday and go from there.

I once again am trying to work on my diet. I found a great book called "Recipes for Repair" which is a cook book based on the Lyme Inflammation Diet developed by a Lyme Doctor. To give you a quick over view, there are four phases of the diet. The first phase is the most restrictive but it is only a week long. The diet of course cuts out or reduces sugars, gluten, dairy etc. So I have managed 3 meals so far and I am still alive. The good news is my husband is trying to go along with it. I really appreciate his effort. In order to give my self the best chance of sticking with this for any amount of time. I did have to give myself one little break. I still get to have my non fat mocha everyday. For anyone that knows me, or even if you have read any other entries, you know I am a hard core junk food junkie. So if a nonfat mocha is the only thing not on the list I have then for me that is amazing. I will say, the book tells me the first couple of days I might not feel great and that it will take 30 days to stop my sugar cravings. So I am hoping I can stick with this. The hard thing is it does take aways dairy and gluten for almost a month or longer also. So everything I love to eat is being taken away but I am realizing I need to go above and beyond to help my recovery.

I guess this brings my story up to date for now. I will certainly let you know how the new abx works, etc...Please check out my photo website if you haven't or my fundraising page. For those of you in the San Diego area our annual Lyme Walk is next weekend at Sea Port Village. The Lyme community would love to have your support. Then the following weekend my amazing Fire Prevention friends have arranged a fundraiser for me at the Belly Up Tavern in Solana Beach. There will be a hypnotism show and some great fun. It is on Sunday, the 23 at 3:00. Check out the Belly Ups website for more info or you can e-mail me at for more info. Thanks for your support and keeping up on this crazy journey of mine. One last thing-Don't forget to watch "Under Our Skin" on Netflix, Hulu, some on demand cable services. It will really open your eyes to what is going on and awful reality of this disease. Love you all.