Time For a Lyme Update

I thought it was time for a Lyme update. Partially for me to remember what it is I have been going through and part of it so I don't have to see the looks on all of your faces when I tell you my Lyme disease has relapsed.

But let's not start there, let's start at happier times since it's been a long time since I actually updated. In July 2016 my Dr. took me off all four of the antibiotics I was taking. I had been on a various cocktail of rotating antibiotics since November of 2014 and it felt amazing to finally get off all of them.

Not only was it amazing to not to have to take three to four antibiotics with all of my meals, but I felt amazing. I forgot what not feeling sick was like. It felt so good to have energy and motivation and to not feel limited by my health.

It made school so much easier to feel good and not have cloudy head or try to plan in sick days into my study time. I started working out again. I ran a spartan race with Hal's family as a symbol to myself of conquering Lyme.

It just felt good. My Dr said at my last appointment in March that I could continue to go off some of my supplements and that likely by the end of summer I'd be off all supplements. That was like music to my ears. The light at the end of the tunnel was finally visible.

After the Spartan Race, school ending and an awful red-eye where I didn't sleep my body got run down and I got a cold for the first time in like two years. My cold turned into bronchitis that took me a month to kick.

In January I got another cold which turned into a sinus infection that also took me a month to get rid of.

My immune system had just taken too many hits and even though I was feeling OK, I wasn't quite feeling 100%.

My chronic fatigue came back with a vengeance. I woke up one Monday morning, felt like I had been hit by a truck so I called in sick and slept until noon. I slept for almost 12 hours straight, got up, ate some food and went back to bed for a few more hours.

I've started noticing I'm having a hard time controlling my body temperature. I do the slightest exercise and I'm immediately pouring sweat. Literally the 3 minute flat walk to the bus stop leaves me sweaty, even when it's cold outside. I've also started getting some of the whole body aches I used to get a lot.

I was feeling concerned when my Dr. appointment rolled around on Monday, so I brought up how I was feeling and my Dr. said it sounds like my Babesia symptoms(a very common Lyme disease co-infection) are back. Thankfully I'm not back on antibiotics. Instead she's upping my supplements and putting me back on some she had weaned me off of as well as switching my diet.

But it means my Lyme has relapsed a bit. I'm a mixed ball of emotions. I'm so glad that my Dr. takes me seriously and addresses the problems so that I can actually get better, but at the same time I feel like I'm mourning where I thought I was, where I was hoping to be. I thought I was almost done, and now I've stepped back like a year. I know Lyme treatment and management will be something I deal with for the rest of my life, it's just disappointing to have such a large setback when I had been feeling so good.

So maybe for a bit, please don't ask me how I'm feeling. I may have some bad days and please forgive me in advance for canceling on you. Just know that most days I'm fine. That doesn't mean you can't say anything. I'll read your comments and feel happy and thankful to have you in my life and thinking of me, just don't be upset if I don't respond right now.

Here's a lit of my current supplements, mostly for myself but also in case anyone stumbles upon this who is also going through treatments.

Adrenevive                                                         Nattokinase
Artemisinin                                                         Omega 3
Astralagus Root                                                 Resveratrol
Boluke                                                                 Salt Stick Electrolyte
Chlorella                                                             Sasparilla root
Grapefruit extract                                             Soothe & Relax
Iron-C                                                                  SR-CoQ10 with PQQ
LB Core Protocol                                               Theralac probiotic
Methylated B-12                                                Vitamin D3
Microbinate

Tinctures:
Sida Acuta
Crypto-Plus Microbial Balancer
Cumanda

2016 year in review

I didn't blog once in 2016. Maybe after you read about all the things that happened in 2016, you'll understand a little more. I have loved having this blog to look back on, to remember things, or to look up information I posted about and I'm sad I've lost a whole year of that, but when you barely have time to sleep, something's gotta give, and for me it was the blog.

For my memory's sake here's a 12 picture review of the crazy, awful, and wonderful year we've had.

1. I started paralegal school at Georgetown University

The main reason why this blog died this year was because of school. I enrolled in Georgetown's paralegal studies program and was working full time and going to school full time for an entire year. It ate up all of my free time, but I learned a lot and made some friends, and came out with my paralegal certificate in the end. Which then led to a surprise promotion at work. You're looking at the legal department's newest and only paralegal.

2. Hal started a new job

Hal very suddenly received an amazing job offer at a really cool biotech he just couldn't turn down. He said Bye Felicia to EY and working a billion hours and hello to growth, new opportunities and a company that is actually working to cure diseases and save lives.

3. We bought a house

After searching for a house for almost a year, we found our perfect little first house. It's exactly what we were waiting for, in the exact neighborhood we wanted to live in, and for the price we were looking for. Seriously, the planets could not have aligned more perfectly. We wanted something that was a good price and wasn't already remodeled, so we could make it exactly how we wanted. We bought a house and left for Asia the next day.

4. We spent 3 weeks in Asia

In January while we were snowed in a friend notified us there was a mistake fair to Asia. $450 roundtrip tickets and a break in-between semesters led to perfect timing to spend 3 weeks backpacking across Vietnam, Myanmar, Thailand, and Cambodia. It was such an adventurous trip and we even came back with a huge dinner table from Cambodia. We had clothes made in Vietnam and ate all the pho, toured breathtaking ancient temples in Myanmar, got scuba certified in Thailand and went back to our village in Cambodia, saw our friends, family and students.

5. We gutted our first floor

We bought our house, left for Asia the next day and while we were gone, this is what our house looked like. The house was supposed to be almost done by the time we moved in, but we ran into some problems with permitting and plumbing, and it took a month and a half longer to finish than planned. Meanwhile everything we owned had to be in the three rooms upstairs, we had to live without a kitchen for two months and without running water for days at a time.

6. We remodeled it into a home we love

I literally just walked downstairs and took this photo since people had been asking for more photos of our house. While it was such a pain to live through the remodel, to say we're in love with how it turned out would be an understatement. We just ran with the ideas in our head, didn't listen to anyone else and are so happy with how it turned out. Now we get to slowly remodel the upstairs ourselves.

7. We expanded our animal farm

Little miss Maeby joined our family in July. We pulled the trigger right as our remodel was ending and rescued this snuggle bug. She was a breeder dog who was turned out and on death's door when the rescue found her. She loves people almost as much as she loves blankets and will snuggle all day long.

8. No more antibiotics

I took this picture the very first morning I didn't have to take antibiotics with my breakfast in almost 2 years. I still take quite a few supplements and tinctures, but my doctor has slowly been weaning me off of them, while ensuring my body will stay strong and healthy on its own. While my journey with Lyme isn't over, nor will it ever be, I'm finally on the up and up.

9. We went to Canada

Neither Hal or I had been to Canada before, so Hal planned a surprise anniversary trip to Niagara Falls and Toronto. Niagara Falls was breathtaking. And we stayed in Kensington Market area of Toronto, a wonderful hipster neighborhood which we loved. We also found Toronto was plentiful with mangosteen, our favorite fruit, which is hard to find in America.

10. Hal turned the big 3-0

Hal turned 30 the day after I finished school, and I was so glad we got to celebrate together. I threw him a surprise birthday party. We were so honored so many friends from all different parts of our life came together to celebrate Hal with us.

11. We ran a Spartan Sprint

Spartan Sprints are a 5 mile 25 obstacle race. I viewed this race as a sign of conquering Lyme Disease. For the first time in almost 3 years I had the energy to work out, so I set the goal to run the race with Hal's family. We had so much fun. We did it all together, helping each other and encouraging each other along the way. I never thought I'd say this, but I can't wait until we do it again.

12. We survived

Hal and I enjoyed staying home for Christmas last year so much, we decided to do it again. We hosted Christmas Eve for some friends, then headed down to Williamsburg and spent some time in Colonial Williamsburg and Jamestown. It was so nice to have some time to do nothing but hang out and reconnect after such a busy, stressful year.  When 2015 ended, it was such a hard year and I remember writing the year in review just feeling like the hard times weren't over. While this list focuses on the wonderful things that happened to us in 2016, it was a hard year on so many fronts for both of us. We made it through remodels, awful elections, sicknesses and school and have finally made it to the other side of 2016. Thankfully it feels like 2017 is also going to be on the up and up. 

2015 year in review

Facebook just told me that it's been 8 years since Hal became my facebook friend. Since we were talking in the hallway at church and told him what facebook was, and that he had to add me, and that I was the most important person to add; so he put a star next to my name and history was set forever.

Well it's got me feeling nostalgic and it being the end of the year, so I thought I'd finally get around to posting a little year in review.

1 move & 1 offer on a house

We moved once this year which brings us up to something like 11 moves in the last 7 years. We moved in order to help the second number 1 on this list. We put 1 offer in on a house. While we got our hopes up with a verbal yes to our offer, we're both glad in the end it fell through. This was a big step for us, and the house hunt continues in 2016

2 best friends

2015 really was the year that these two became best friends. Their personalities compliment each other so well and they're hilarious together. I can't imagine not having both of them around.

3rd year in DC

We started our 3rd year in DC. We have really grown to love living in DC and love the neighborhood where we live. DC is so centrally located and is filled with endless things to do, most of them free. It's also nice living in a destination city because then we get to see friends and family as they travel through.

4 weddings

We were so lucky this year to celebrate the weddings of four couples that we love dearly. Each one was in a different state, spread out across the country and we are so thankful that we could spend their special days with them, and be a part of their celebrations.

5 beach trips

Hal and I were kind of beach obsessed this year. Every chance we got, even with Hal studying throughout the summer we went to soak up the sun. We've never lived this close to the beach, so we try to take advantage of it at every opportunity.

6 years out of school
                                         
This May was 6 years since I finished school. Well that's all about to change in 2016. I'm headed back to school. I got into Georgetown's paralegal program and will start there next month. I'm really nervous to go back to school since it's been so long, but hopefully it's like riding a bike.

7 years of marriage

Hal and I hit 7 years of marriage in September. There's no 7 year itching going on, so I guess we can count ourselves pretty darn lucky.

8 years together

Look at what youngins we were! We were pretty much inseparable from the night that we met 8 years ago,

9 hikes

This year we went on 9 fun hikes. We love being out in nature and taking in the beauty of the earth. It can be so hard to escape civilization out here, so going on hikes has become a respite from busy life. We were pretty lucky to have some windows of good health where we could go on such long and intense hikes. Hopefully next year we'll be able to go on even more hikes!

10 trips

This year really was the year of short spontaneous trips. We went to so much fun places, New York, Savannah, San Francisco, Charleston, The Grand Canyon...just to name a few. We love exploring new places and love trying wonderful restaurants in new cities.

1-1 Certifications

I couldn't think of an 11, so I split them into two ones, because we had some really big things happen this year. We had 1-Hal became a fully licensed CPA. WOOHOO! After a year of studying his butt off he passed all of his tests with flying colors and became licensed. and 1- I became a fully certified doula!

12 months of Lyme

This whole year has been filled with Lyme. I've officially been on antibiotics for year. Sometimes it's hard to believe it's been that long, and other times it's hard to remember what life was like before I was sick. It's been filled with so many sick days, so many pills, and so many disappointments. But I try really had not to let Lyme define who I am and what I can do. It's so endlessly frustrating to feel limited because of Lyme, but I know that it won't be that way forever, so I keep pushing myself not to give in to symptoms.

We had a pretty crazy 2015. We were able to fill it with fun adventurous things despite life getting in the way. I can't wait to see what adventures await 2016!

A little Lymey Lyme update

I haven't updated on my Lyme since July, so I thought it was due. Even if it's just for me to look back on years from now when it's in remission to remind myself of everything I went through to put it there.

October marks a year since I had the potential diagnosis of Lyme; since I started tests to confirm the diagnosis. I can't believe it's been that long. I'm coming up on my year mark since I began treatment. 1 year on antibiotics.

Since July I've had a lot of ups and downs with my treatment. My Dr. has taken me off of Malarone, which is used to fight babasia, a common Lyme co-infection and started me on a tincture instead called Sida Acuta. Unfortunately for the first time in my life I'm having an allergic reaction to something. I get large red bumps that randomly pop up and itch endlessly. I'll have 10 or so for a week, and they'll finally fade away to just make room for another set of itchy bumps to pop up.

She also started me on a new antibiotic called Refampin. It supposedly targets the body differently than other antibiotics and every time I pick it up the pharmacist stressses using a backup method of birth control. Thanks for the psa, I think I get it.

In September I started having a relapse of herxheimer reactions, where you have too much die off and your body is filled with toxins, and you feel like you're gonna die. It had been months since I had a full blown herx, so it was kind of a surprise to have some when my medication hadn't changed in a while.

Unfortunately they continued for a while. I had days where I woke up so exhausted I literally couldn't get out of bed. It's a level of exhaustion that I can't really explain, but it's not your average level of tired.

I saw my Dr. recently and my medicine regime is starting to change yet again. She wants to start phasing me off of antibiotics now that it's been almost a year, and replacing them with herbal tinctures instead. I've just started the tinctures and have to build up to something like 30 drops of each twice a day. I've also started weaning myself off antibiotics, I'll be doing three weeks on, one week off. I was kind of surprised when she suggested this because I've been so sick.

I bought this heat bed from my Dr. It's this little bed like thing I lay in that goes up to 108 degrees over 40 minutes while you just sweat your brains out. It's actually been the best thing for helping my treatment. Sweating out all the toxins has led to no sick days for the first time in over a week.

So my treatment is changing yet again and I don't really know what to think. I trust my Dr, but it's hard to feel like I'm ready to go off antibiotics when I've been so sick lately. I've been so lucky to have Hal spend all his spare time to take care of me, and friends be so kind and bring me a care package. Sometimes treatment and symptoms can be so overwhelming, but it's really comforting to know I'm surrounded by people who care about me. 

Having an Invisible Illness

Are you guys ready for pictures of cats? Because talking about Lyme disease means pictures of my cats cuddling me on my sick days. Today I found this article on buzzfeed about what it's like to live with an invisible illness. I clicked on it and was even more excited to read it, after finding out it's from the perspective of a woman with Lyme disease.

Her struggle to get diagnosed was much much worse than mine, but she brought up some interesting points on what it's like to live with an illness that people can't see and the struggle it is to have the medical community recognize Lyme as the persistent debilitating disease it is. I highly recommend reading it to understand more about Lyme disease.

When you have an invisible illness you have to choose to share your illness with people. You choose to share your journey with people; and sometimes I'm grateful for that. I don't want everyone I know treating me differently because they know I'm sick. I don't want everyone to give me that look when I say I can come to something depending on how I'm feeling that day. Mostly, I don't want them to see me as my disease, but just as me.

A whole new world has been opened to me since my diagnosis. A world of people that are struggling with illness just like I am. We follow each other on Instagram and give each other tips and leave encouraging comments on each other's pictures when someone is having a bad day.

Because having a bad day doesn't mean the same thing it used to mean. It could mean something as simple as riding the metro home made me feel so nauseous and sick that all I can do is lay on my bed in a dark room until Hal gets home from work. Or it can mean I feel like I'm in the middle of the worst flu I've ever had from a herxheimer reaction, and there's little I can do about it except try to sweat it out in steaming hot Epsom salt baths, and wait it out by watching inordinate amounts of Pretty Little Liars.

Having an invisible illness I don't think means having people not believe your sick. I think people believe me. But it means some people have a hard time understanding what you're actually going through, because they can't see how you feel. It means always having people ask you how you're feeling and what they can do; when the last thing you want to do is talk about feeling sick or direct someone in what they can do for you. But at the same time, I feel so so lucky to be surrounded by people that love me enough and care to ask.

I've been on antibiotics and in treatment for 8 months now. When I think about it sometimes, that feels like eternity. I've had a setback with my symptoms and a whole change in my medicine regime which I'm having a hard time adjusting to. It just felt like I was getting better. I went from feeling worse from starting treatment, to feeling so much better and realizing how crappy I did feel before treatment; to once again feeling crappy. It often leaves me feeling disheartened, wondering if I'll ever feel better.

But I will feel better eventually. I know I will. Because there's no other option.

A Little Lyme Update

I can't believe I haven't talked about Lyme since March, so I figured it was time for an update.

And because I'm a brat and stopped responding when people ask me how I'm feeling, I know people are wondering. It's just sometimes I don't want to think about let alone talk about how I'm feeling; so please don't get offended if you send me a message and I don't respond. I promise I saw it, and felt loved that you thought of me enough to ask, but you happened to catch me on a day I didn't feel like talking about it.

I've been in treatment for over 7 months now. When I first started this back in December I never thought I would be where I'm at right now.
Since February - the last time I actually updated a lot has changed. I have worked my way up to 4 antibiotics. For spoonie reference, I started with Doxycycline, and Biaxin. Doxy was fine, I was on it back in Cambodia, but the Biaxin made me so sick I couldn't function, so she switched it to Azithromycin, which I reacted to much better. No more constant nausea and sour stomach! I also discovered the best method to avoid nausea - I take the pills in the middle of a full meal. If I take them too early, too late, or don't eat enough I will get an instant stomach ache. But I finally found a sweet spot.

But of course you can't stay with the same anibiotics forever, so she switched me off doxy and onto Ceftin in April. This was perfect because doxy made me photosensitive and I would burn through sunscreen in less than an hour and come away with painful tingling skin. She also added another antibiotic called Tinidazole.

Tinidazole became the death of me. I take it 2 weeks on 2 weeks off. When I first started taking it, I slowly had to increase the dosage every few days. It made me herx SO badly. Basically herxing is when you're body is too filled with toxins. I felt like I had the flu constantly. But I knew that meant it was breaking up the bacteria, so that was a comforting thought.

I finally increased it up to 1 1/2 pills a day, and tried to do 2, but it just made me so sick I went back to 1 1/2 and was there for a while. It was kind of my sweet spot. Those 3 antibiotics and my bajillion supplements. Finally in April, for the first time in months and months on my 2 weeks off tinidazole, I didn't feel limited by my disease. I could go about my day, and do fun things on the weekend and not run out of energy.

Things can't stay the same though, and she added in a 4th antibiotic called Malarone. I reacted pretty well to the malarone. I had a tough time for a few days increasing the dosage from 1 to 2 a day; but after my body became used to it, I started feeling fine again.

I was so nervous for our trip home, and all the hiking we had planned, but it fell on my 2 weeks off tinidazole, and everything worked out perfectly. I had lots of energy and life was pretty good.

Until Tinidazole had to be increased to 2 a day again in June and then life became not so good. My 2 weeks off of it weren't the respite they used to be. For a solid month I have been back to having low energy and kind of the constant of feeling like I'm running a low grade fever.

We hiked Old Rag on the 4th, while I was off Tinidazole and my arthritis flared up so badly I could barely walk for 2 days. It was the first time I'd had arthritis since I started my treatment in Dec, and it was so discouraging to have it come back.

I had another Dr. appt this week and I think my Dr was more discouraged than I am, that I wasn't feeling as well as she would have hoped. And just as I feel like I've plateaued after coming back down hill, she's switching up my medicine again, and taking away and adding an antibiotic as well as another supplement, which will put me at 13 supplements, and a total of 32 pills a day. Malarone will go away, Tinidazole will be coming permanent and another antibiotic will be added.

I'm a little nervous at how I will react to the new changes, but excited as well. It feels like I've plateaued in not a great place, so I'm hoping things will go up from here.

Receiving Service

My sister in law sent me an article that kind of culminated something I've been thinking a lot about lately. I'm sorry for all the Lyme disease posts, but it's kind of taken over my life, and therefore my blog. And sorry for the cat pictures, but this post needed something.

Service, and learning to accept it is hard.

Generally I'm a really independent person. I like to not have to depend on anyone but Hal for what I need done. I don't like to feel like I'm making someone else's life harder by asking / letting them do something for me.

But some days lately I literally can't take care of myself. The new medication I'm on hits hard and fast for two weeks, and my two weeks off of it I spend recuperating from it, right as I have to go back on it. I've never had to rely on the people around me more than I have in the last month. And I feel terrible. I hate every time I have to ask my managers if I can work from home because all the sudden out of no where I feel like I have the flu, or I'm so nauseous I can't sit at my desk, or any other all encompassing symptom. I hate having to message Hal and tell him I'm going home sick again because then he comes home to take care of me instead of staying at work to study. I hate having to ask co-workers to cover for me on things because I have to work from home because I can't get out of bed.

But lately I've been humbled. I realized something important. People want to serve each other.

We spent some time with someone recently who kept turning us down every time we asked if they wanted something, or if they'd like to do something. And it made me realize  I've always done the same thing. I turn people down all the time because I don't want to inconvenience them, but generally, it's not an inconvenience. People want to feel like they're helping.

The last birth I did, the mother of my client kept asking me if I wanted this or that and I kept saying no. I always come prepared with what I need. Well as the birth took much longer than expected, I accepted her offer for a sugar pick me up and she said "finally, something I can do for you." That experience coupled with watching someone blow us off, just like I often do, I realized people want to serve one another, because that's how humans connect with one another.

So maybe I just need to accept help graciously and be thankful that my life is full of people who are so willing to cover for me, to take care of me, and to be so accommodating with what I'm experiencing instead of worrying that I'm inconveniencing them. Maybe I don't always have to be the one doing service, maybe this is my time to accept service. I have so many kind, thoughtful people in my life that have been so helpful; if even just hanging out with me to take my mind off how I'm feeling. I really am so grateful for it all.

And I'm grateful to you all, for all of your kind comments on these posts that are more of me just chronicling my journey, they really do help buoy my spirits, so thank you. 

A Little Lyme Update

I've been in treatment for Lyme Disease for about two months now, so I figured it was time for an update on my experience.

I began with six different vitamins back at the beginning of December and slowly built up an antibiotic to taking three pills twice times a day. The antibiotic is called Doxycycline, and I actually took it in Cambodia to prevent getting malaria. Then Jan 1st I began taking a stronger second antibiotic called Biaxin.

When I was on the doxy, I felt fine. I just ate a few rice crackers before taking it and never had a problem. I wasn't so lucky with Biaxin. It makes me really sick. After much trial and error I realized I have to take it in the middle of my meal, and my meal must be a full meal. If it take it too early or too late, or don't eat enough I'll know pretty soon. In the beginning I had unbearable nausea as well as a sour stomach and it gave me a horrible metallic taste in my mouth. My work was so nice and let me work from home on the days it made me really sick. Once I figured out how to mitigate most of the side effects, it wasn't too bad.

I just had my follow up appointment with my Dr. It has hard to tell her how I was feeling as I feel worse on the medicine then I did before I started taking it. I was kind of hoping that after about two months I'd be done with treatment.

No such luck. She actually told me I have 2-3 more months of treatment. She told me that the lyme bacteria build barriers around themselves to prevent the antibiotics from killing them. She's changing my biaxin to another antibiotic that's similar, but supposedly has less side effects. And she's added in another prescription, and three other vitamins that together are supposed to break down the barriers around the bacteria and treat a possible coin infection.

Currently I take 15 pills a day, and it will be moving to over 20 days with the new vitamins and prescriptions.

I was really discouraged after my appointment and hearing that I have to continue treatment for what feels like forever. But as I thought about it, I realized a lot of my actual lyme symptoms have subsided. My infection on my hands is gone, I don't have arthritis anymore and my fatigue has lessened a lot.

Another silver lining is that I have to continue my yeast free, sugar free diet and I've dropped a pant/dress size since I started treatment. I thought cutting out carbs would be a lot harder than it turned about to be. I never thought I'd be able to do it, but I noticed I felt a lot better when I wasn't eating yeast.

I'm excited, but a little hesitant to start all of my new pills next week. Here's to hoping I can start feeling better while on the pills than I did before.

Lyme Disease

This post is an update to the last time I posted about maybe having Lyme disease. I feel like this blog has been a bit of a downer lately, and I promise I'm not posting about this to get sympathy comments. But I know I would have liked to find a blog about what someone went through when they were diagnosed. I still get comments about my posts I did on Dengue Fever; so hopefully this will help someone in the future feel a little less alone.

Was that too dramatic? Well, then you're in for it with this post.

I had my follow up with my doctor this week. I elected to do the better non insurance covered test to get clarity on my diagnosis.

I have officially been diagnosed with Acute Lyme Disease. Poop.

After meeting with my doctor last time and thinking she was crazy because I didn't have any of the symptoms and had never noticed a tic bite, but I started to notice that I actually did have symptoms. I remembered how my shoulder hurt every day for weeks for no reason. For a while I couldn't carry my purse on that shoulder anymore. And how after I played ultimate frisbee; even though I didn't hurt anything my knee hurt so bad I couldn't go up and down stairs for a week. We went on a hike a few weeks ago and both of my knees hurt so badly afterwords even though I didn't injure them.

I've always prided myself on my memory. I have a really good memory, but lately I find myself forgetting things, or not being able to recall the word I'm looking for. I completely forgot to patch my boss into a conference call last week. It's so frustratingly not like me.

But the worst is fatigue. I had a day a few weeks ago that I literally couldn't get out of bed. I have never had anything like that before. It was kind of scary to feel like that.

I don't want to be a hypochondriac and think I have every symptom under the sun; because I don't. I don't have a lot of the worse neurological symptoms. I don't want to use this as a crutch. I've reached this weird Catch 22 point; where I don't want to give into the symptoms and use them as excuses, but I am just so exhausted most of the time. I'm exhausted when I wake up in the morning. I don't want to give into it because I was happily living my life before I knew I had this, but at the same time my symptoms seem to be getting worse, and I don't know if it's because they are actually getting worse, or if it's because I am more aware of them now.

So now I'm starting on a crazy 6 week medicine regime. My Dr. follows the international recommendations for lyme disease instead of the CDC's recommendations. I'm starting to take 3 supplements twice a day on top of the three supplements and birth control I was already taking. And then I have to ease myself onto antibiotics. Start with once a day, then twice a day, then two in the morning and once at night, then add in a second antibiotic.

It's all a little bit overwhelming honestly. I know that I will be ok, and am so lucky that while lyme is not curable, you can put it in remission. There are silver linings in this. It has gotten me to be healthier than I've ever been in my life. But I'm not to the point where any of that is comforting yet.

Honestly, I'm scared. It feels like someone just told me I have cancer. But then I feel bad for thinking that because cancer is infinitely worse. It's scary to know that I will have this for the rest of my life; and that it can come out of remission if your immune system gets low or you have to take immune suppressants. It's scary to know that I have this inside of me forever.

It's just scary, so I'm letting go of my normal crazy control and am just giving myself some time to be scared, to be sad, and eventually I'll reach the point where I'm ok and I can be comforted by those silver linings, but for now it's ok to be sad. 

2014 Is Not The Year of Sam

I've realized something this week. This is just not my year. I've had some crappy things go down this year on top of a lot of mishaps.

The cherry on the top of my not already great year, my doctor told me yesterday she has a clinical suspicion I have lyme disease. I had some blood work done and the initial test to see if I have lyme disease came back positive, and the second to see if I have chronic or acute lyme came back negative, which means my results are inconclusive. So now we're sending my blood to a better lab that of course doesn't take my insurance to have the tests done again.

I asked what we do if the tests came back negative, and she said that the tests for lyme disease aren't very good, that there hasn't been enough research yet to build a really solid test for lyme; and that pretty much no matter what my blood work says, she thinks I have chronic lyme disease.

 I went in because of my hands. I've had these tiny clear itchy blisters on my hands for months now. I obsessively put tea tree oil and coconut oil on them every day and it helped a lot, but they just weren't getting better, and new blisters were popping up every day, so I finally went in. She said it's something she sees in lyme patients a lot.

 And even though I don't have some of the symptoms for lyme, she said that people might develop symptoms, but over time they just learn to live with them and adapt, but really your immune system isn't doing so good, which is why this developed on my hands, because my immune system isn't working right.

Reading about lyme online, it makes it sound like you take anti-biotics and you're all better forever, but really, I'll essentially have lyme disease for the rest of my life, and we just need to figure out how to suppress it from taking over my immune system.

I'm not trying to be woe is me, or say I've had the worst year ever, because that's not true. Good things have happened this year. Hal and I were finally able to live together again, and My sister had a baby two days ago and I get to go meet my new niece soon. I try to not be negative in general, but I'm not going to lie, and maybe it's crazy; but it feels a little freeing to not get so worked up about all of the crappy stuff and just chalk it all up to this not being my year.