My Personal Lyme Disease Fight

Tick's Tick's Tick's!!!!

2011-08-03T06:40:00.000-07:00

LOOK VERY CLOSELY! THOSE LITTLE SPOTS AROUND THE RABBIT ARE HUNDREDS OF TICKS. THE SIZE OF THE TIP OF A SHARP PENCIL.

Routines are always normally uneventful. Taking the trash out, doing the dishes, feeding the dog, watering the garden area, or letting the dog go outside are all things we do without thinking and topically they are done without interruption. One will do it without thinking and move on to the next thing. Sometimes, just sometimes the routine changes and a normal everyday act becomes much more then just a simple quick routine.

This morning a routine turned into just that. Layla (my dog) whimpered at the back door to be let out. She only does this when she see's something in the yard and would like to get at it. These things can be rabbits (we have a tune of them), squirrels and sometimes birds that annoy her. She never catches them. It's always surprised me because she is a very fast herding dog who can get up to 35 mph. I know this because I clocked her at it when I was racing her on a small tractor out in Ohio. I don't even know if she tops at that speed because we ran out of dirt road but still... I think that's rather fast for a dog. So, for the last 6 years Layla has been obsessing about small animals (big ones too when on the trail running) her whole life never to actually "get" one.

We all know what this is leading up to. I'm in the kitchen with my baby and I hear my guy yelling at Layla to "leave it." The second time I hear him say it I know it's something different the normal. Knowing she only responds to me I rush outside to reconfirm the command only to see her all the way across the yard (we have a large yard!) shaking something in her mouth. I know instantly without really seeing that she has finally caught the young daring rabbit that has been hopping around the yard the past couple weeks. Thankfully Layla hears my voice and lets the rabbit go as I hand baby off to dad and rush over to see what damage she's done. Normally once a dog get's the taste of blood they change and become ever harder to control but she's heard my command voice and thankfully her training has paid off.

The young rabbit is not dead... poor thing. Despite the mass amount that I see I can't help but feel bad and I take my socks off and scoop it up. It had one puncture wound near it's belly so I rush inside to get a cardboard box for it. Sadly we watch it die shortly after getting it inside the box.

Now you ask yourself... what does this have to do with Lyme? It's a sad story and yes we've heard it hundreds of times. Dog's do these things and one day they are liable to catch something. You see the problem is that a little over a month ago I was bitten by a tick. Having a new baby I hadn't really been in the great outdoors and knew the only place that I picked that tick up was our own back yard. As you recall I freaked out and treated our yard for the pest and had a very hard time stepping foot into our grass after.

I placed the rabbit on the ground in the box to do a little training with my dog. I just didn't want her picking up germs but I still wanted her scarring the rabbits away. Before I got started I noticed things crawling in the box. I looked closer because they were so small and I thought they might be flees which are such a pain to get rid of! Sadly I was mistaken. The rabbits fur was coming alive as at least a hundred tinny nymph ticks were dropping off. It was like the rabbit dieing was their bus stop and they were all hopping off at the stop. When I say a hundred I am not exaggerating. They were very small little specks that moved. Some larger some smaller.

Freak out number two for me this summer!!!!!!!!!!!!!!!!!!!!!!!!

!!!!!!!!!!!!!!!!!!!!!!!!!

I had a feeling that these small seemingly harmless creatures were bringing ticks into our yard. Now I know. I am haunted by what I saw. The ticks are so small how would you know you had one in you? They are like a speck of dirt that you would brush off your arm or so small you wouldn't even think to brush off. There was SO many on just one little animal and suddenly I look at my dog and am discussed with all the fur she has. How many could she have on her? The drops you treat them will only kill the tick if they bite and often they are only on for the ride. Is she a bus for them too? How in God's name am I supposed to protect my yard from these invisible creatures when they hitch rides on animals I can't control? Will my little girl ever get to roll around in the grass? Will we ever have picnics on a blanket? How many of these are on me now? The questions flood my mind.

The Meltdown I Never Had

2011-06-16T09:55:00.000-07:00

Two days ago I walked into our backyard and watered the Cherry Blossom tree that we had planted for our daughter and the large plot of grass we were attempting to regrow. It's a routine I do every day.

My daughter and I came inside after and took our afternoon nap and while she was still asleep I took a quick shower. It was when I was drying off that I found it... there on the side of my butt cheek was a small very red rash. Upon closer examination there was unmistakeably a small tick sticking out of the middle!!!

Stunned pause.

I freak out! Normally I am very composed but the following is a melt down I never had over the three years I fought Lyme.

I pulled that tick out so fast and ran and grabbed a baggie to save it. Still naked I looked over the rest of my body looking for any more small invading killers and then ran and woke my daughter up (she was outside with me) to strip her naked. Not finding any on her (Thank God) I take another look at my new found rash. It's not the bulls eye rash but then again the first time I never even had a rash let alone a tick.

I place my stunned naked baby in her crib and (still unclothed myself) run around the house frantically searching for my phone. I curse myself in not keeping it in one place for moments when my brain is not functioning but running on pure endorphins. When i finally locate it I call... oh man who do I call in the middle of the day when everyone else is at work? My mom. Yes, I called my mother who lives in Tucson, Arizona.

When she picks up I had a hard time getting my words out. As if just speaking the words would make it really real and the experience of the last several years and what Lyme cost me floods my thoughts. "Mom, I (choke) found a tick on me and, and... I already have a, a rash." I start crying and can't speak. She does what I needed her to do and tells me to call my doctor right away to get on meds.

As I wait for my doctor to call back I run to the store and talk to someone about how to treat my yard. Then I go to the pet store and grab dip for my dog. Needless to say, about $125 later I'm home with enough bug treatment that I'm sure we'll be bug free for a while.

The rest of the day my skin is crawling. It's one thing to be out on a hike or nature walk and come across ticks but to find one ON ME in my own house from my own back yard that I thought was controlled really freaks me out.

The next day... I walk outside to water the grass area and tree and I stand on the edge of the cemented patio looking at the tree on the other side of the yard. It never seemed so far away but there is a good amount of grass that I would have to walk through to get to it. It seems like forever away in my sandled feet and I imagion ticks crouching on each of the thousands of grass blades waiting to pounce and burrow their heads into my vulnerable skin.

I've never been an over dramatic person. While fighting Lyme I was still able to keep my composure by keeping my eye on the ball and taking measured deliberate strides towards my own healing. I never really stopped to think about the after affects of my experience. The major fear I have now of the small creatures that can tear my life apart slowly and painfully. I never thought of the nightmares I would have about my own daughter and her ability to play outside freely like I did as a child. Or how I would never have the urge to go camping or back packing again out of the fear.

As I stood at the edge of my safe zone in my yard wishing I could get enough confidence to walk to the tree I asked myself if I would let the ticks win today? Yes, I thought. Today I will let them win because I am still emotionally getting over yesterday, but tomorrow... I'll walk to the edge again and ask the same question. If there is one thing I learned it's that tomorrow is another day and sometimes it's OK to try again as long as I continue trying.

Kara Welcome to the world

2011-06-16T09:45:00.001-07:00

March 25th, 2011 my daughter was born. A beautiful healthy little girl!

We were successful in having a non-medicated natural birth. At the last minute we discovered that she was breach, but we were still able to have a quick easy birth. Just 10 hours of labor and no tears or loss of blood. My midwifes told me it's as though my body was meant to have babies. Go figure, I am a women!

It's now three months after her birth and three weeks ago I started running! Oh the excitement of lacing up my running shoes, snapping on my dogs leash and heading out. The labored breathing, the sweat, and my pounding heart beat was music to my ears. It's like I can ballance myself again finally after 4 years.

Starting slow! 1.5 mile run every Monday, Wednesday, and Friday and walking Tuesday and Wednesday and swimming on Saturday mornings. My workouts are only 30 minutes because I am breastfeeding and that in of itself can make me tired. I figured from doing nothing a 30 minute workout is a good strong start.

My baby is wonderful (she sleeps through most nights) and I feel great!

February And Going Strong

2011-02-08T20:12:00.000-08:00

I would like to report that it is February and I am now 33 weeks pregnant and still feeling amazing! I still have energy to work a full day come home and make a healthy dinner. Yes, that's about all I can really do and if I go past that I tend to get a little more moody, it is still more then I was able to do when I was ill.

I am in my third trimester and still have more energy then when I was sick which is an amazing feeling. I do know that most of the hormones can really help with joint pain which means we wont know how my joints are till after the baby is born. It's been an uncomplicated pregnancy and we're crossing our fingers that it continues to remain so.

Just two more months till the baby is due! I'm looking forward to meeting my new little girl/boy.

Life Changes

2010-12-01T18:26:00.001-08:00

When you are ill for a lengthy amount of time with no real finish line or light at the end of the dark tunnel ahead of you one sometimes withdraws. Once my third treatment started I will admit that I withdrew. To successfully get through the withdraw stage of illness a person first has to accept that they are withdrawing and that the withdraw is completely acceptable. Embracing this can only help move you forward and onto the next steps of dealing with the unknowns.

The third treatment was completely different. I was on three different antibiotics and diet and I took an extra month after being taken off of them to recover and work on building up my body again before returning to work. Once I returned to work it was like night and day compared to the last two returns. My brain was functioning, my energy was becoming better and better and my overall sense of my body was returning to me. My co-workers and boss also noticed the major change in my behavior which was such a positive thing to have. Still, I was somewhat reluctant to really take it as a defeat as I was concerned about possibly having my success taken away from me as I had before. So, I was ever more careful about my schedule and kept to a strict routine with my diet, sleep and activities. It appeared to be what I needed.

Sadly, the last thing that my illness could take from my daily life activities was my job and it finally took that with it as well. 45 days after my return my office “let me go” which was disappointing and a relief all at once. After having been ill for as long as I was with an invisible illness it was difficult to get the understanding from my peers. I knew prior to returning that if I wanted to continue to build my career that once I was well again it would be important for me to find another team. Once people develop an opinion of you it is challenging to change it and in most cases it’s better to move on so that you can move up.

While this was a challenge in of itself as losing a job is a play with pride. It was difficult to wrap my head around and even more frustrating knowing that it was directly correlated with my illness. When I find myself at the bottom… I know that the only way to go is up and I felt the best I had felt in three years which gave me a new sense of confidence.

Then, something even better happened; 6 months after being taken off of my drugs I started to feel better and better. As a women I started noticing that my cycle was going back to normal along with everything else. I have always tracked my cycle which has benefited me a great deal in knowing my body! When I started noticing this I pulled my ever faithful companion aside to talk about possibly using birth control again. We had chosen to refrain from it when I was on all of the drugs attempting to not play with the norm as much as we could. I was on enough drugs as it was. At the end of June we started to look at our options to make our choice. I was starting to get excited because I felt so great and I had now been off of the drugs longer then I had been in three years!

On July 24th, 2010 (my 28th birthday) I discovered that I was pregnant. Surprise!! We hadn’t changed anything, yet here I was looking at a stick with TWO lines on it when I was used to seeing ONE! I had a follow up appointment with my Lyme Doctor (Doctor R) that week which was a relief because I had a bunch of questions for him with the new development.

Dr. R looked at me with this smile that I hadn’t ever seen on him before and he started to get excited. “A, do you know what this means?” my response, “ummmm…” Dr. R, “A, if your body was still ill and couldn’t handle a pregnancy then it would not have allowed you to get pregnant!” Dr. R was excited. Needless to say I am now 24 weeks pregnant and I feel better than I have felt in over three years. My energy is wonderful and even pregnant my brain is back to normal and I can remember things again. My pregnancy has gone swimmingly without any complications or challenges. I would have to say that I am more than halfway there and any of my concerns about the pregnancy have been in vain. If I was still ill, I would have relapsed by now or even had issues with the pregnancy but instead, as I sit here typing at 9:30pm I have made it through the day without a three hour nap and my baby is kicking up a storm inside me.

I have completely finished the chapter of fighting Lyme disease, and have started a new chapter! I plan on keeping tabs on how my pregnancy goes and how breast feeding and my baby comes along. It seems like there isn’t a lot of information out there about having a baby after Lyme disease and I would like to add to the small amount that is out there. I had to wait to write this post until I had the chance to tell all of my family!

2011 brings me a new year with a completely new and different life. My baby is due March 31st and I am looking forward to meeting the little one who brings with him/her a new happiness after such a long fight.

The Climb

2010-01-26T12:03:00.000-08:00

The last two months have been challenging. I started IV treatment the Monday before Thanksgiving (November 23rd, 2009) Two weeks later I asked my doctor to do his best no mater the cost or what insurance would cover. He added Clarithromycin to my treatment and we continued the IV for an extra two weeks. The extra weeks were out of pocket. I was lucky that my family all scraped together to help me cover the cost. Without them I would not have been able to afford it. This time, the IV treatment went well without any major issues. I was even able to continue my sleeping schedule in preparation of going back to work.

On January 6th, 2010, we removed the pic line and continued Doxy orally and then added yet another drug to go with the doxy and clarithromycin called metronidazole or known as flagel. I started throwing up on this new drug. I have the classic symptoms of a pregnant women. Some foods I can't eat and some I can't even smell without getting ill. I learned how to balance taking them (Flagel every 8 hours and doxy and clarith when I wake up and when I go to bed) so that they didn't cause me to throw up. I also learned what foods were ok and which ones hurt through trial and error. My stomach is always in pain now but it's more tolerable then throwing up and I think I have it manageable now.

The other side affect was an extra amount of exhaustion. I would stand up and be extremely dizzy, and walking up the stairs felt like I just tried to sprint a 200m race even though I took them slowly. There were moments of lashing out at my guy from over sensitivity and other moments where I would take a shower in the morning and end up back in bed in tears because I just couldn't do anything. It's been a very rough three weeks.

Two weeks ago I started getting weekly massages. I HIGHLY suggest this if you can afford it. I can not explain what a large difference that they have made on me. Not only do they help flush out any toxins but it energies me. They really started to make me feel different.

5 days ago, I felt like walking. It was 50 outside and the sun was out which felt so nice. I didn't walk far but the fact that I felt like doing it was almost as though I was breaking through something. I suffered shin splints from walking... which was odd but I was wearing boots. I switched to running shoes and that fixed the issue. I've been walking every other day and feeling a lot better. At this time, I still have to take a nap after but it's well worth it.

The flagel is what made me really crash physically/mentally. It was harder this time to look on the positive. It's taken me this long struggling to find something to write here but finding nothing but negative depressing thoughts. I just wasn't motivated. It was as though I was still morning the fact that this time last year... I was going through the exact same thing.

It's ok to go into a dark cave for a while, but if your strong you have to climb out eventually.

The positive to all of this was that people are starting to notice that I appear to be losing weight. I feel that this is a combination of the meds, and my carefully measured eating habits. Now that I am starting to show some improvements on the meds, it's time to start building my life back up... slowly and carefully measured!

Food Food Food!!!!

2010-01-14T14:48:00.000-08:00

I LOVE food. Back when I was actively participating in Tri's some people used to ask me why I did them and I used to joke that it was so that I could eat whatever I wanted to.

I was one of the lucky kids who's family actually "made" their food. Dinner was always a big thing at the end of the day and making it was just as big a thing. To top it off my mother was a midwife (not the crazy kind but the educated kind, just to clear that up!) and part of being a good midwife is nutrition. I was home schooled when I was in 8th grade and my mom used to take me to collage lectures on nutrition and other medical odds and ends. I'm lucky that I was exposed to these things early on in my life because when it comes to cooking and understanding my food I consider myself to be experienced. I'm not a nutritionist by all means... but I have a very good understanding of food unlike a lot of my peers.

My new allergies as well as my new medication (with a bad side-affect of metal taste, nauseousness, and vomiting) has increased my awareness that if I get to eat, it better be something good cause I only get to put so much down. It's been extremely challenging.

One night, rolled up in bed wanting to just die from the unusual feeling exhaustion/ nauseousness, I pulled myself out of bed and painfully wondered into the kitchen desperate for something to ease my stomach pain and take the awful taste out of my mouth. First thing I saw was a lime which I, shaking, split into pieces and stuffed into my mouth... big mistake. The acidic level of the lime kinda exacerbated the metal taste. So the next thing in my mind to help was ginger. Something my asian guy always has in the fridge.

You can imagine what placing a raw piece of ginger into my mouth did... it burned badly but took my mind off everything else and for the moment that I could stand it it was well worth the pain. I tried dipping it in sugar and sucking on it but that didn't really help dissipate the burning pain very much.

After that desperate night I searched for other options. Here is some things I found:

Ginger

Ginger Nutrition Facts

Ginger is a GREAT food to fend off nauseousness and even curb the metallic taste in the mouth. At the moment it's the only thing that works for me.
You can eat too much Ginger. From what I found you should only eat 1g dried ginger or two cups of tea a day.

Here are some different forms of ginger:

1. Ginger Tea

I found a good forum that has some ginger tea recipes that are really good for you here. It's really easy to make!

2. Pickled sushi ginger

There is less of the burn feeling in the mouth. I like the pink kind that you can get from an Asian Market is more sweet and easy to pop in mouth at desperate moments. It's by far my most favorite option.

3. Crystallized ginger

Normally covered in sugar and therefore not as good for you. I also find that it's just like biting into a fresh bit of ginger with a strong bite to it. Not my favorite option but some people like it.

Cabbage:

Surprisingly is full of a lot of benefits that I was unaware of. You can look up some of the info on the same website for the ginger above at Health 24.
Did you know that it has more pro biotic benefits then yogurt? For someone who is allergic to the most common pro biotic supplements including yogurt I was surprised to find this bit of information. You can eat too much of this just like ginger however.
To keep the "potency of nutrients" it can't be cooked for too long. It's an easy thing to cook and eat with rice. I just boil a thin layer of water in a covered pan, place strips of cabbage inside and add a little butter, salt and pepper (sometimes some lemon chicken seasoning can be really good!) and cook covered for 5 min or until the leaf's just start to change in firmness. Ymm, so good! It has really started to ease my stomach issues in the long hall.

Fresh veggies are just plain good for you. I could continue going on about what I have researched and I might start adding recipes that have helped here. There are things out there to help curb the challenges of taking mass amounts of meds. The options are endless and a lot of fun to discover.

Information is Power

2009-11-20T12:10:00.000-08:00

About a month ago I decided to get tested for food allergies. I’ve had them as a child and was under the impression that I had for the most part grown out of them. My allergies when I was young were Cow’s Milk, eggs, fruits (all but the citrus type), melons (all), cucumbers, and avocado’s In that order of severity. I used to have reactions to them but as I got older I chose to eat them (not wanting to appear picky or just wanting to indulge like everyone else) and I seemed to be able to tolerate all but Milk. I’d never had milk in my diet from when I was in kindergarten which caused my body to stop producing the enzyme to break it down having had no need for it which then forced me to become severely lactose intolerant.

Soy became a very large crutch of mine for almost everything dairy related like ice cream, Starbucks lattes, and even cheeses. I was so used to the ritual of finding other ways of eating the things everyone loves to indulge in knowing that there is always an alternative. Having done it my whole life it was never an issue and never something I really missed.

Up until my blood test came back I had no fear of foods so long as they were dairy free. Much to my surprise when I receive a message from my allergist stating the following: Ambor, I know we talked about the possibility of you being allergic to a couple things, however surprisingly the results are quite different then what we might predicted. You are highly allergic to Corn and Soy and mildly allergic to peanuts and a little allergic to milk in that order.” As I listened to the message writing down the list my roommate was making dinner for us… when I hung up the phone and re-looked at the list it took me a second to read it over and allow the news to actually sink in…

‘SOY!’ I pause my thinking, ‘Wait, my morning lattes… (I run down the memorized Starbucks menu in my head realizing that my options are completely out!) then… oh no ICE CREAM too… breath, I can deal with this’

‘Ok next on the list, Corn… corn chips, salsa, grits, corn starch, uh oh this list of none foods is starting to grow.’ “Oh, my God, I am allergic to PEANUTS?! “ I say out loud. My roommate who happens to be a gourmet chef (yes I know this could potentially also be a factor to my gaining weight in the past year…) joins in on the conversation at this point.

“Really?! Don’t you eat a lot of peanuts? How didn’t you know that?” All I can see is the peanut butter I JUST purchased yesterday tucked away in a cabinet at my desk at work and then I can see myself collecting the bread, knife, napkin, and jelly to make my daily sandwich for lunch… the perfect lunch! I almost don’t hear my roommate mentioning over my shoulder looking at my list, “whow, Ambor that means no Soy sauce… ummm that’s almost in everything you eat with the amount of Asians you keep in your life.” OH NO, SOY SAUCE, OF COURSE, SOY! Great… that’s even worse then everything else, I think loudly in my head slowing starting to freak out. “What are you going to do for butter? You can’t have any of the alternatives either… they are all made of soy or corn. Oh, man, do you know how much food we eat that has High Fructose Corn Syrup in it?”

At this point I turn around still in shock and politely ask him to please stop talking. It’s a little over whelming to say the least about one of these things let alone to have the list so bluntly slammed down in front of me. One thing at a time.

Once I realize the severity of my allergies and talk to my allergist we decide that it’s really only something that can help me in my current situation to eliminate these allergens from my diet for a couple months while I am being treated and also to test and see if it makes a difference in how I feel. Though it may truly put a large dent in my ability to eat out or eat anything processed because, people, if you weren’t aware, Fructose Corn Syrup is in EVERYTHING that we have in the US. It’s alarming the amount in our diets and I’m not so sure it’s a good thing. Think about how it’s made and you tell me if it sounds natural to you?

I make a rash decision to gorge myself with all the food that I love to eat the following day and then aim to promptly cut myself off for what feels like could be eternity following my day of gluttony. I suppose it wasn’t the best idea… to eat a small qt of ice cream followed by pop corn and corn chips and glass of soy milk all after having eaten all day thinking of everything I would miss just to have one last bite. I ate as though it was going to be my last meal because as it felt like it was!

The next day I went cold turkey. I went to Starbucks and tried really hard to try and find something but ended up with green tea, which isn’t such a bad thing, cause I have been increasing the amount when I started antibiotics based on a story I read on a fellow bloggers blog a while back about it increasing the effect of antibiotics. For lunch I have a small simple fresh salad without dressing due to, you guessed it, corn syrup and thinking at lunch that it wasn’t so bad and that I might live through this.

When my stomach was ready for dinner (which came a lot earlier than I expected) at 4pm I started thinking about stopping to get something to eat… then quickly noticing that I had no idea about anything I could eat except at the store. So, I figured I would drop by and find something, anything quick on my way home. As the time grew closer to 5pm my energy level got worse and worse which is all normal these days, however I was starving this time without anything to eat and little energy to make it to the store. Still I pushed through the erg to crawl under my desk and sleep for just 15 min (knowing full well that it would be more like an hour) and somehow manage to make it to 5pm. I didn’t even say good bye to anyone as I took what little energy I had to gather my things and half drag my feet to my car.

As I am driving home I stop at a stop light and promptly loss my awareness for a brief second because of how comfortable the head rest is and how heavy my eyes feel. My past car accident flashes before my eyes and I’m quickly alert again but give into the fact that I need to just try and make it home safe and I throw away my ideas of going to the store knowing full well that my kitchen is only full of the newly forbidden poison.

When I arrive home safely too tired to care about my growling stomach I somehow find the energy to make it to my bed. I’m Grateful that my dog is so patient with my rushing her to hurry back inside (she’s used to getting rushed these days) I slump still in my work cloths in my bed and dont awaken for two hours. By then the sun has gone down and dark has fallen into my room and I lay still with my eyes awake but no energy to move any part of my body. I wonder why I’m awake and why I couldn’t have just fallen asleep for the night when I hear my groaning stomach, but for some reason no matter how hard I try and summon my body to move I can’t and I lay there for a long while contemplating my challenge and measuring how much energy I have and what my options are. Realizing that while I researched it to no end over the past two days I appeared to have researched what I COULDN’T eat and forgot to think about what I COULD which has brought me to this very situation where I have no idea what is safe and what isn’t making it all that much more effort to eat something. Ultimately no plan was built for this situation…

I hear a soft knock on my door which is odd because normally if the door is closed we all leave each other alone. I muster up enough energy to say come in and walks in my wonderful friend and personal chef! “Oh my goodness you look awful are you ok?” I only node yes and peer up at him noticing that I am in the same position I was when I first laid down for this nap. ”Have you eaten dinner yet?” This places me a little over the edge as it’s been the major issue for hours now… and I reply with a large grown and fight tears thinking how dumb of me to respond in such a way. (hate being so tired) To which my wonderful roomy replies, “OK, I take that as I no. I’m going shopping I’ll be back.”

I was lucky my roommate stepped in and knew what he was doing and created a tasty healthy safe dinner for me this night but the reality is I’ve learned my lesson with this situation. First you should make sure you plan accordingly when you decide to change something in your daily routine. Just like if you think you want to start incorporating exercise in your routine, you should make sure that you plan the day before and gather your tools or cloths to set yourself up for success. This is really something that can be suggestion for anything but I feel that for us Lyme Disease fighters it’s that much more important to make sure that we prepare ahead of time for crashing moments. It’s something I am normally good at but failed miserably with this new venture of a diet.

I also learned that when one is looking at a major change in one’s life we can’t focus on the negative (or think about what we "can’t ____") even with something as simple as food. Instead we should be researching what we can do. If you know you can’t run then figure out what you CAN do. If I can’t swim for the next month with my Picc line, I CAN ride my new stationary bike. For everything you list in your head that you can’t do anymore for your mental sanity you have to figure out an alternative. We can’t get wrapped up with a long list of things we can’t do as that is a little more than over whelming and can suck you in easily.

Lastly, this could possibly be the missing link for me! Taking these allergens out of my diet (which by the way I had no idea how much corn and soy I consumed daily till now) could be exactly what my healthy body needs to fight this war that appears to be going on inside me. Having knowledge of my own body can only mean more power.

Watch out Lyme, my body is about to be in its own element which means you’ll be fighting on MY home field and we all know that THAT swings the wining favor more towards me then YOU! If your not all that sure about my statement just ask the Yankee's how many games they have won on their own turf!

Back to Square One - Third Time The Charm?

2009-10-21T10:04:00.000-07:00

Third Time's The Charm:
"Prov. The third time you try to do something, it will work."
http://www.blogger.com/post-create.g?blogID=2970548949404017574

The past month my energy level went from slowly increasing and manageable to having none over night with little to nothing to provoke the "crash" as I like to call them. At first I tried hard to work through my tired feeling only to notice that I was becoming increasingly more sensitive emotionally and on top of it trying to pretend like nothing was happening which was getting to me mentally. Mentally is only to be expected... over a year of this is rather difficult to not allow it to affect your positive outlook of the situation. It's OK to feel like this so long as you figure out a way to accept it and snap back.

I finally bit the bullet faced reality when my knees, hand joints and neck started to hurt a lot and scheduled an appointment with my IDS doctor. He was none to pleased to see that I was in his office again. I went for a long while without him and while I love him to death the man isn't really someone I want to see a lot. We went over everything and he/we decided to start over from scratch for a third time. (yes, at this verbal acknowledgment of reality I did find it hard to keep myself composed while in his office)

Yesterday I started 100mg of Doxy orally... again. This all seems so familiar doesn't it? That's because this is the THIRD time doing this. Third times the charm right?

The Treatment Plan:

Meds:

Oral Doxy for 30 day
IV possible again in 30 days depending on response to oral and test results

Tests:

Give more blood - Prior to this I had only had my blood drawn once in my life... Can you beleive that? Now I'm a pro.
Get MRI with Contrast this time
Sleep Study

My Plan this time around:

Work:

Continue to try and remain here working as long as I can keep up with things. My boss's wife recently was diagnosed with breast cancer... and is going through treatment. While he is out I'm attempting to hold the fort down and this already is posing as a challenge. This is a dilemma and for now, I'm choosing to keep my mouth shut about my relapse and will revisit if I get worse.

Exercise:

During my slow recovery time I got from 155lb to 143lb and would like to stay at 143. I will not gain more weight but now might not be the time for trying to go the other way. I want to try and continue walking, biking inside, and swimming if possible or some type of movement for at least 15 min every day. Yoga once a week and possible reinstatement of physical therapy if I go on IV again. I think trying to stay moving a little this time around might make a big difference.

Emotional Wellness

Accepting that I'm doing this again is the first step to dealing with this and not allowing it to come out in anger or other destructive ways. For now the plan is to continue to focus on teaching myself the guitar as an outlet and remaining open to the possibility of finding a life coach or physiologist to assist in dealing with this if I can't get myself back up in my head. My mind is important to be able to force the exercise portion of this and it must be strong at any and all cost.

New Activities Help Mental State of Mind

2009-10-16T07:01:00.000-07:00

I've focused a lot of my recovery on attempting to get back into my active lifestyle, however, when I have crashed as hard as I have in the past three weeks I realized how completely devastated I was in what felt like failure in the one thing I have been fixated on.

While getting back into being active is still important I also know how important it is that I have my sanity to be able to do that. I'm youngish and my life, aspirations and dreams seem to be slipping further and further away from me as the time that it takes me to get back into my norm continues to be stalled by the unknown with little to no answers on when or how I'll be able to get back into things. This isn't a "positive" way of thinking and the mental game I need to be able to play to become active requires mental strength which I am lacking at the moment.

I used to have this odd personality that some people found to be admirable and others thought was scattered and lacked consistency. I would get an "itch" to do something and just do it. I would move across the country with only what would fit in my car and no job, (none of my friends and family back home believed that I was leaving until I did) attempt to train and do Triathlons out of the blue, decide that I want to learn how to build with brick and mortar and building an amazing square file pit, build my own desktop computer from scratch out of no where, dive into a paddling club suddenly, or even something small like picking up a Digital SLR and trying to become an expert in taking photo's or decide to try snowboarding and quickly owning all my own equipment and becoming a snowboarding fanatic. I was all over the board in activities and interest. My friends never knew what to expect from me next. No people, I don't have ADD!

Whatever I chose to do I would threw myself into it and would research and obsess over making it my life until I figured it out. It's amazing the information out on the Internet to help with this type of a personality! While I was never amazing at what I did I loved trying new things and trying to be my best at them. It's how I developed friends of all types and how I opened my horizon with options. My friends used to make fun of all the odd different things I was into but it was just my personality. I was never bored and I always had something to try and master.

This disease took my ability to be able to just get up and do these things. Somehow it also took my spark and drive away. I was in school prior to becoming ill and now I'm scared of getting into school again and being forced to take a test and have to regurgitate the information in my head. While I know I know the answers and the content I would be afraid of drawing a blank at test time and not remember how to spell my own name.

The fear of "crashing" physically also holds me back. When I have to sleep for days at a time and weeks turn into months and months turn into years... it feels as though life is passing me by and I'm not contributing to it. This can spark a domino affect in my own head of increased anger.

This mental fear that used to be in the back of my head and held at bay when I had small steps of success to hold onto and focus on has been unleashed as my success and work was stripped from me these past three weeks forcing me into a depression state of mind that is lasting far longer then any other depression moments. In the past my depression moments lasted a day or two at the most and I was always brought back up somehow which always made me stronger. I prided myself in being able to climb out of my depression with my logic and accepting that it's normal to feel that way and awaking the next day thankful for a new day and a new attempt at my abilities.

This time, it's harder. I was able to see the finish line... but now I'm not sure where it went and I'm tired mentally as well as physically. I have no idea what tomorrow might bring and that in my own measured out mind is concerning and painful.

I thought about learning how to play the guitar a while ago. I know a lot of friends who learned on their own and I thought that maybe it could be a good mental thing for me to try and do. It doesn't involve much other then my dedication and a little bit of brain work which could be good exercise for my brain. I'm also taking my personality into approach here in an attempt to try and cater to my own needs as a person... to do new things and explore the world around me despite the fact that it's just from my own bedroom. I don't expect to be good at it anytime soon or ever but I do expect myself to enjoy the ability to learn something new and possibly gain even more respect for the people who do play well.

Here's to trying new things!!!! I hope that this helps get me out of this deep rut and into the light again. Music can sooth the sole and is an amazing outlet for so many things.

Scary

2009-10-12T09:48:00.000-07:00

Who Will Comfort Me - Melody Gardot

Veuillez installer Flash Player pour lire la vidéo

Melody Gardot Who will confort me sélectionné dans Musique et Clips

It appears that along with the change in weather I have regressed back significantly. At first I thought it was just a couple days that would pass and I would recover as long as I continue to keep myself plugging away slowly and measured but I'm admitting today that it has now been two and a half weeks that both my mood and my energy has been significantly affected by an unknown. This new peak in fatigue has no known cause as my routine has not changed at all.

I'm forcing myself to continue my routine, however, the time that I used to use as relaxing time has been turned into sleeping time. Everyday I try and wake up thinking today will be the new day where I will have recovered but it feels like each day is harder then the other. I'm worried, scared and feel as though no one around me understands or believes that it's affecting me as badly as it is. I've stopped mingling and reaching out to friends again because of my poor mood and energy. This is the worst I've been sense my last treatment back in March.

I see my Infectious Disease Doctor as well as a Sleep Study doctor next week. I hope that someone can tell me why I'm slipping so badly all of a sudden and that someone can give me a next step on what to do with this new progress. Hanging on my threads until then...

Running Friends Please Watch...

2009-09-26T20:47:00.000-07:00

Running Raw: Deer Ticks and Lyme Disease

The REAL September Update

2009-09-16T14:44:00.000-07:00

Physical Therapy - I can't express how much I am in love with physical therapy. If I could force one thing on anyone who has Lyme it would be physical therapy. It's been going extremely well and I am noticing a big difference with my strength, while small I still feel so much better when I go.

Neurologist - I traveled all the way to Tucson to see a well known Neurologist whom a family member sees. I allowed them to talk me into the visit knowing they were mostly attempting to lure me home for a visit. This was my third Neurologist and I braced myself for the same results I had gotten from the others. To my surprise this doctor actually apologized genuinely for his colleges. I was extremely impressed with his thought process as together we developed a plan to move forward. I learned a great deal from him which is always what I expect from my "doctor team." He made the cut and I like him.

The interesting thing is that we started me on Alzheimer medications. Yes, I'm 27 and I am taking these drugs and in all honesty, they are changing my daily life dramatically. The new drugs are Aricept and Nuvigil. The first for memory and the second for brain alertness.

I will say here, that I was not aware of how bad I was prior to taking the drugs. I knew things were not working properly but I thought I was at least functioning. This really was not the case. Having suddenly received a jump on my brain activity the difference between functioning with the drugs then without is like swimming through mud and then suddenly being in clear water. When I'm not on Nuvigil (as it is an "as needed" drug for me) I truly can not process anything and I can tell that I become lucid and distant from my environment making me solely focus only on what is happening rather then being a part of what is happening.

This new change is beyond exciting for me. It has given me a glimpse of where I am supposed to be brain wise and helped me grasp the love of life I had lost which is a true part of who I am. Life as I was, is worth the continued battle. These drugs have reminded me to not give into this lame feeling of fatigue. I will not stop until I have my fight back in me!!

Activity Level - I am now in a Yoga class on Wednesday nights. I have not been able to be consistent enough with my energy level to be comfortable committing to a class in the past but this past week I was able to confidently sign up knowing that I have been balanced enough in my schedule and understand my energy levels enough to be able to consistently attend. I feel that Yoga is a good class to start out with. Recovery is such a slow slow process.

I'm swimming periodically through the week but I have allowed it to be more of a reward to myself when my body feels like it can give a little more. It has not become a routine yet, however it is about two - three times per week.

Walking has subsided a little as my days at work have become more demanding and lengthy. Working Monday through Friday has become a norm for me and I have been able to finish the week out as strong as I started it consistently for the past three weeks. This new schedule at work has been a positive step in the right direction as I begin to slowly climb out of the painful survival mode of life.

September Update/confession

2009-09-16T14:31:00.000-07:00

Yes it's been a while. I've really tried my hardest to pretend like I don't have anything wrong with me which is really the opposite of what I'm supposed to be doing. Really I should be embracing my difference and using my vast knowledge gained from my fellow lymies and trudging ahead. Alas, I pretended for the past couple months as though there was nothing wrong.

Did this set me back? Well, ok, maybe the handful of nights I allowed myself to "go wild" and have a couple drinks (enough to make me a happy go lucky person) was counter productive. Maybe, the couple nights, ok maybe a bit more then a couple nights where I stayed out all night by drinking a redbull every hour just so that I could watch the sun rise on a beautiful summer night with my feet propped up on the beautiful brick fire pit that I built in the back yard wasn't the best idea for someone who has issues waking up in the morning.

I WAS A NORMAL 27 YEAR OLD for just a month. Just one month did I go all out. Yes I accepted the repercussions that lasted for days... ok weeks... but still it was all worth it to live again and honestly the fact that I was able to do it drug free (ummm mostly if you don't count the drinks) means something! I would not have been able to do that this time last year.

Now that I am done with my guilt trip on myself. Specially given my fatigue these past couple weeks... I'm not complaining still it really was worth it. I'll get onto the better stuff.

IDSA Hearing in Washington DC

2009-07-30T06:12:00.000-07:00

On Thursday, July 30, the Infectious Diseases Society of America (IDSA) will hear testimony in Washington DC, as required under an antitrust settlement with the Connecticut Attorney General.

This afternoon I will be attending the hearing. I'm unsure what I will find there, but just being there to be a part of the numbers is needed. It's cool that I am so close to this movement...

View the hearing:
http://www.ustream.tv/channel/onthemarcmedia
http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974

Get Moving Again

2009-06-30T14:08:00.001-07:00

It's everything in me to do such small tasks like going for a walk or swim. I feel like I have an able body but the fatigue is like a bungee cord that I am attached to. If I get a certain distance away from it, it jerks me back to the starting point. So, I've chosen to take a different approach and maybe the fatigue can just be more of a strengthening tool then a bungee cord throwing me around when I resist it.

My trainer used to do the resistance training like the picture below with me to help my running speed. If I went out too fast and she was strong I would be jerked back and fall on my a$$. If I went out slow and felt the small tug from behind before I leaned into the resistance and sprinted out with full constant force you could really benefit from it.

Resistance Training D emo

My Bungee cord is now simply a resistance training tool. I have to slowly and steadily go forward with my movement/activities and try and feel for that resistance before I lean into it and take off.

I saw a Physical Therapist today with a goal of getting back into my regular activities. She has set up some very basic, very boring sets to work on my little muscles or core muscles. It's her opinion that because I have been down for so long my little muscles aren't doing their job which is making my larger muscles work harder and over compensate for their lack of strength. She things that there is a possibility that if I strengthen my smaller muscles my body will work much more efficiently and effectively, which could help me with my fatigue crashing moments that I have after I try and exercise.

All athletes know that we're supposed to feel a little tired after exercise but, having to take a 5 hour nap at 10am after a light swim in the AM is not normal fatigue. We should feel tired but energized. We're good with our mind games and we know our bodies well enough to know when it's too much or too little. With this information I am going to use it to figure out that sweet point of my "resistant band."

1 hour light swim is too much, but 1 mile walk isn't. (I haven't gotten on my bike just yet!) Here is my plan/goals which will morph depending on finding that sweet spot.

Light swim - 3laps rest and repeat for 1/2 hour - every other day
Walk - 1 mile at 3:00 Mon-Fri
Strength Training - homework from Physical Therapist daily
Work - yes I consider this movement at this time because it exhausts me - Mon-Thur

Other than those things, going out or mingling is not on my list of things to do at the moment. Once I am stronger physically I think that hanging out with friends will come easier.

Everyone, please cross your fingers for me as I attempt this new mentality and schedule. The first couple of weeks are going to be challenging. It's really hard to mess with my set in stone schedule when what I am doing works well the way it is.

Oh to the days where I did everything and anything that came across my plate!

Washington DC Metro Crash

2009-06-23T09:07:00.000-07:00

Dear Family,

I was not associated with the Metro Crash. I was safely at home eating a scrumptouse dinner my Chef roommate had delicately created for me.

I'm safe thanks for worrying.

To those affected by this tragedy, we're morning for your loss.
http://www.myfoxdc.com/dpp/news/local/062209_witnesses_recall_metro_crash_scene

June Update

2009-06-09T06:48:00.000-07:00

Working again has completely drained me. I have had the luxury of taking Friday's off and working as much as I can Monday - Thursday. This has allowed me those two days for recovery from working and one day for keeping my life outside of work together.

I'm not sure how much longer I can pull off not working on Fridays. One week at a time...

While all my other symptoms have gone I still have the very first and most discerning one which appears to worsen when stressed or working (maybe working and stress are the same thing.) The fatigue symptom.

It's supposedly the most challenging part to get rid of and with the fatigue you risk some mental challenges as well. Your brain just doesn't work. You feel like your response level is moving like molasses and for women you get extremely emotional from the tiredness.

My once unemotional (and proud of it) personality used to be able to handle anything people or life would throw at it. Now, feeling like I haven't slept in four days my emotions are constantly bubbling over and overwhelming me to my own embarrassment. It appears to be getting worse rather then better as time goes by.

For example:

While my emotions have overwhelmed me they have only been shown to people who were closes to me during moments of intense conversation surrounding my life and how my illness has affected it. Of course an emotional response is acceptable.

Last Saturday I was stung by a hornet. While my entire family is allergic to hornets I did not go into anaphylactic shock which was a large relief for me. The next day however, my entire forearm had swollen up drastically and appeared to be getting much worse. I refrained from going to the ER (not really wanting to have add ER visit number 6 to this year) and treated it to best my knowledge and waited to see what happened.

Monday it was much worse and unbearable which caused me to go to my doctor. Upon seeing it my doctor informed me that it was "infected" and I needed to go on antibiotics. My response was total disbelief and silence for an awkward moment.

Then I suddenly burst into massive tears. Sobbing, I told her I didn't want to go on antibiotics. Anything but drugs please! Sadly I hate my practitioner and she rushed me out of her office with instructions that if it didn't get better in 24-48 hours i needed to go to the ER to get it lanced.

It took me four hours to digest and move past having to be on antibiotics again. I was completely and utterly angry at what, I was unsure. I spent time on the phone with friends just venting and saying for the first time ever, "WHY ME?" Then of course the guilt of feeling like that or thinking like that would set in and I would once again brake into massive tears. Why had this incident, so small compared to what I have been through, seemed to have had this effect on me?

Here is the bottom line.

I. JUST. WANT. TO. BE. BETTER. AND. NOT. SEE. A. DOCTOR. FOR. AT. LEAST. THREE. MONTHS.

That's it. That's all I want in life.

BUGS PLEASE LEAVE ME ALONE. (thank you for your understanding of my situation bugs)

I wish that would work. (nervous laugh here followed with long exasperated sigh)

As for exercising, I've only been able to do little things. I'm unsure when to try and start to push it and make myself walk more then the 15 min walk that I go on at 3pm everyday. I think I am waiting to see if my emotionalism will subside first at which point, I'll try again.

Working Through A Chronic Illness

2009-05-26T13:50:00.000-07:00

One of the largest and scariest questions that I have had through my experience with Lyme Disease was how to handle the change at work. I'm still struggling and learning how to deal with it as well as my poor boss who depends on me being there.

I did find a good start to my research on how to manage this challenge professionally.

By Eve Tahmincioglu
msnbc.com contributor
updated 7:38 a.m. ET, Mon., Nov . 19, 2007

Rick Williams, a firefighter from Silverton, Ore., was having so much pain in his fingers that he sometimes couldn’t turn the nozzle on the fire hose, often asking coworkers to take over.

He would be discreet, not letting anyone know he couldn’t handle the job. “I would just tell them, I wanted to hold the hose and back them up,” he says. “I never stopped doing my job.”

No one suspected that Williams was actually in agony, with joint pain that made even pushing the button on a car door impossible. He was popping Ibuprofen pills as if they were candy, in denial over what he was feeling.

Finally, Williams went to a doctor in 2001 after waking up one morning on a training trip in Salt Lake City and finding he couldn’t close either of his hands.

He was diagnosed with rheumatoid arthritis, a chronic illness that causes severe pain and joint-motion loss.

“I’ve been a firefighter since the mid 70s and there I was, 43, diagnosed with an auto immune disease where basically my body is attacking itself,” he says. “I was fearful for my job.”

After trying many different drugs to help with his arthritis, he found one that did the trick, and is now able to not only function in his job but is typically pain free.

At age 49, Williams is still a firefighter and plans on being just that until 2011 when he gets to retire. “My employer knows I have this but they’re okay with it mainly because I’m doing my job,” he adds.

There are 130 million people who have one or more chronic conditions in the United States today, according to Gerard Anderson, professor of Health Policy and Management at Johns Hopkins Bloomberg School of Public Health.

There are few solid numbers on how many of workers like Williams, are staying on the job even though they suffer an ongoing illness, including arthritis, diabetes, multiple sclerosis, asthma, cardiac and cardio-vascular diseases, and even cancer. But experts believe the numbers of individuals with such diseases in the workplace is increasing.

The aging population and the rise in the nation’s obesity rate are contributing to the growth in the numbers of individuals with chronic illnesses. But what are also driving the increase, experts say, are therapeutic advancements such as drugs and rehabilitation programs for a host of chronic diseases.

As much as three-quarters of the population with a chronic illness can be helped through disease management and continue to work, says Chris Wilhide, the director of program development and research for Nationwide Better Health, a division of insurance giant Nationwide that provides disease management programs to employers.

As a result, employees today are living and working with a host of chronic diseases that may have once meant a quick trip to the unemployment line.

“All these factors are allowing people to live more productive lives,” says Rosalind Joffe, a career coach who focuses on people with chronic illness, and the author of the forthcoming book “Keep Working, Girlfriend! Women, work and chronic illness.”

Joffe’s overriding message: “Figure out a way to keep working.”

While advances have made it easier for workers to keep working, it’s not a simple task to go from realizing you have a chronic condition to being able to continue your career ambitions.

Joffe, who has multiple sclerosis, had to make adjustments in her career. She was a video producer but found she often had trouble walking and suffered from intense fatigue. She ended up going to the accounting side of the business, and then went on to teach. Eventually she started her own consulting firm so she could work from home. “You have to figure out how to work in an environment that’s accepting and conducive to what you’re dealing with. That should be your first priority.”

There are a host of issues to consider, including everything from how to tell your boss to how to deal with those days, or weeks, you might not be up to snuff because of your illness.

As far as telling your boss, Joffe recommends only bringing it up if your condition is getting in the way of your work, and even then keeping your personal trials and tribulations to a minimum.

“If it’s changing the way you work it’s foolish not to talk about it, otherwise people will make assumptions about you that are much worse than if you told them you have a chronic illness,” she notes.

Let your boss know you can handle the job, but that you might need time to take medication or go to doctors’ appointments. And bring some coworkers into the fold because they may be able to help out on projects if you miss work. You can then offer to reciprocate.

Ask your employer if they could make reasonable accommodations to your workspace or the way you do your job, but make it more of a give and take. Don’t make demands.

If your boss is unreasonable, you may have the law on your side depending on your condition. The Americans with Disabilities Act covers individuals whose illnesses have made them disabled in certain life functions, either permanently or intermittently, explains Chris Kuczynski of the Equal Employment Opportunity Commission. You can find out how to file a claim at the agency's Web site.

On a day-to-day basis, there are things people with chronic conditions can do to make their work life a bit easier.

Take a break from the computer. I know you’ve heard this before. But taking breaks from the computer and changing your posture is even more critical for people who have chronic ailments, says Lynn Gerber is the director of George Mason University's Center for Study of Chronic Illness and Disability.

And getting enough sleep, eating right and exercising, Gerber adds, are key. “If you have a high [body mass index], above 30, that means metabolic consequences,” she explains.

One of the toughest questions that a person with a chronic condition may someday have to ask is, “how do I know when the job is just too much for me?”

Maybe accommodations have been made at work to help you adapt, and you’re taking all the right medications and used all the right pain management techniques, but you’re still in too much pain, too tired or too depressed to handle the daily grind.

Gerber suggests talking to a licensed disability evaluator. They are typically in an outpatient setting and have a background in rehabilitation or neurology, and can help you assess if you need to change something in your disease management regime or you just physically can’t handle the workload.

It might just be the stress of your job that’s making your condition worse.

Kim Bregman was diagnosed with Systemic Lupus Erythematosus two decades ago, and at the time she was a manager at IBM on the executive fast track.

“The best change I made to my life was leaving Corporate America and moving into jobs where I had complete autonomy of my job and work demands. I got off the fast track and learned to stay busy, involved and successful on my own terms,” says Bregman, who started an Internet publishing firm and is now a real estate agent.

“There is no reason to be super woman,” she says, adding, “You are a better person for forgiving yourself for having the disease and loving yourself enough to take care of yourself first.”

On The Mend

2009-05-18T14:40:00.000-07:00

"Thinking positive!" It's so much harder said then done, isn't it?

Someone in my doctors office hugged me this morning and said, "Ambor, you've really been through a lot and we see it and know. We all think you've handled everything so positively and we're all inspired by how well you've managed this!" (have I ever mentioned how much I LOVE my doctor and his staff?! To hear people remind you that your doing really well and that YOU inspire THEM is really uplifting. She probably has no idea how much she touched me when she said that. I umm... wiped a tear away when she said it. Don't tell anyone!!!!

I was in another car accident last week (this time it wasn't my fault!) this women just backed into my car right where I had had my last accident just two months ago.

The prior accident I had kinda had fallen asleep or just not been mentally there when driving home from a long day at the office. When I had gotten out of the car to speak to the man I hit he brushed off the damage I had done to his car and smiled and said, "it's ok! it's my old car don't worry about it." He had then walked me back to my car and held the door open for me. "Sr, your so extreamly kind to me. Thank you, you have no idea what this means to me." To which the man winked at me and said, "I think I might know how much it means."

I slowly got out of my car in my secound accident to see what type of damage had been done to my already damaged fender and the women got out of her car very apologetic. I smiled and told her, "it's ok! it's my old car don't worry about it." and I walked her back to her car. This made me feel like I had passed on the generous attitude that the man had so recently showed me. My life has changed after everything I have been through. I see things much more differentially then I used to.

On another note, I saw my Doctor today and we talked about my mental breakdown that happened last Friday and Saturday night. I was unsure exactly what had triggered it but I had ended up in hysterical tears with very disturbing thoughts and was unable to breath. Each episode took me a couple hours to get passed. I think looking back it was kinda crazy behavior. I flashed back to that moment when the nurse had complimented me on how well I was managing everything. The thing is that I think it's OK to have these laps in mental stability. Maybe it's my way of morning my loss of life as I know it, but i kinda feel better today after letting it all out.

My doctor mentioned that he really felt like work was stressing me out. My next step in this fight is to come off of antibiotics, learn how to get back into a routine while working, (I started to try and take a brake a 2:00 when I'm used to taking a nap and walking instead. This has helped give me that little extra oomph for the rest of the day,) learn how to manage stress (more information will follow once I have researched it more,) and go to see another doctor and possibly try a stimulant (but only for a short time. 2-4 weeks and not longer.)

Fatigue is the last symptom to get rid of!!!! If I can get past this... I will have won my fight with this Disease. Mind over body or body over mind... I think this disease is kinda both.

When I am able to run three times a week for over a mile... I am going to buy myself the new Garmin Forerunner 405. Just so long as all my disability goes through and I can afford it!!

May Update

2009-05-13T11:21:00.000-07:00

Yes, I have been avoiding anything that has to do with the word Lyme. Yes, including lime's themselves! My couple week sabbatical went longer then expected because I was honestly having WAY to much fun with myself and I didn't feel like I wanted to face my issue's head on for a little while.

I'm back though with some new developments that are rather interesting and frustrating...

2nd to last week of April: Picc line was removed (three weeks on Doxy IV) Was put on Doxy 200mg twice a day orally.

3rd Week of April: VERY SICK with flu of some sort. Was in ER because Doctor thought I had Swine Flu (hahahaha this story is rather funny "now" but not at the time)

1st week of May: Felt better from flu started to try and see if i could tire myself out before I went back to work (swam 1 hour three different times, attended dragon boat practice, helped someone move and even went out with some friends for a little fun on the town) the only effect these had on me was a little soreness in my muscles. I was VERY excited about this new found movement of my body and my ability to mingle with people again. This new feeling of well being gave me a very good glimpse on what life is REALLY like when I feel good and it seemed like everyday I was getting better and better. The best part was when friends mentioned to me that I was, "different." It made me feel like I WAS getting better. My mood went from calm and reserve to bubbly and excited about life. I even made some new friends. It was a complete make over.

2nd week of May: Started work... here is the frustrating part. To know what it feels like to be better and have it taken away is hard. I want to continue to "move" and get more fit again as I feel like a balloon from all my water retention and weight gain (it's only about 30lbs and I look fine just feel BIG)but how am I supposed to do that when one work day completely knocks me off my feet? This is the question I have to ask and this is where I feel like I might be starting from square one again.

I noticed that while I was not working I spent all my time managing my body. If I felt a little fatigued I would carefully look at why and try and change my routine a little. I ate and slept during specific times and made sure that I was not stressed EVER.

How is it possible to manage that while working?

April Treatment Update

2009-04-10T10:07:00.000-07:00

After two weeks from hell and a lot of family visits (one after the other) followed by a week of full sleep and recover mode, things are starting to calm down. It was great to see everyone that came to visit. They all pitched in and helped in a lot of different ways. It's always amazing how much family can pull together in a time of need. I have to admit that even though no one fully understands my situation, it's nice to know that I am not alone and in the worse case scenario I have the support I need.

I want everyone to know (I kinda feel like screaming it off a mountain!) that I am starting to feel AMAZING. I am really starting to believe that some people and some things are meant to be in your life or happen. Due to my very bad allergic reaction I was moved to IV Doxcy. (see treatment on right side for more information)I am turning a major corner in the last two weeks. I feel light on my feet, in my head and I am smiling. My friends have all started to point out to me that they haven't seen me like this in a long time. :)

My specialist told me that I am the 5th patient that has gotten better on the Doxy Vs. the mandated Rocephin. He also believes after my allergic reaction (even after having taken Rocephin orally for three months prior to the IV again) that I may not be absorbing my drugs when I take them orally. I suppose that is something to keep in mind for the future.

I am still in high spirits and on my treatment plan for the next couple of weeks. I'm planning on taking this week off from Lyme research after last week of diving into it. I feel so good that I would like to stay thinking positive and research tends to bring my mood down.

I'm still walking everyday. I'm up to 3miles but haven't felt like running again. I am walking in my running shoes just in case I run into a day where i feel like it. Layla, my dog is getting a lot of GREAT exercise and training with all my walking. She's starting to really get up there with perfection. She is such a smart dog I'm very pleased with her. Off leash running is a larger possibility with my our focus on squirrel therapy! She's really been a good reason to walk everyday.

To my family who keeps an eye on this blog, please let me have a week off!!! I'll give you a call/email after my week off. :)

Running!!!!!!!!

2009-04-05T17:41:00.000-07:00

I have been on the new IV drugs now for about a week. Once I was able to rest and not work I have been focused more on what I need to do to get better. I continued my walks with the grace of the cloud covering and the weather has been amazingly perfect.

This is the first week in my treatment and fight of Lyme where I have been able to take a walk daily for a full week. I have also focused on eating a good breakfast every morning and cooking my food instead of the normal survival mood that I am normally into when I am working. It’s been a good blessing to take the stress off and just work on how my body feels and what it needs.

On my last walk I was a half mile into it and I noticed that I felt like running… I thought for a second and thought, why not! So, I picked a point that I wanted to go to and just started running. I knew that I didn’t want to overdo it and I didn’t want to just run till I didn’t feel like it (that’s never good training!) Logically, I chose a half mile. Not too far, not to short. Then, I started running!!!!

I felt so good, the only thing I kept thinking was that maybe it was time to start walking in my running shoes (which were gingerly cleaned and packed into my closet so long ago) and not my clunky heavy trail running shoes. When I started running my dog, Layla, got excited. We haven’t run sense last September. I got half way through my half mile and started to feel a little winded and tired but nothing that I couldn’t handle.

When I made it to the half mile, I stopped but felt like I could have kept going. I felt like this was a good start to running as I did not want to overdo it at all. I finished my 1 mile left walking and still felt amazing. (I was SOOOO excited that I called my friend up and had to tell her!) It was just a half mile but it felt so good to have done something!

I was very sore the next day which is understandable. My joints are definitely bothering me a little after that run but it was well worth it. I really feel like I’ve had a lot of good days one after the next. I’m excited, but I know that I don’t want to overdo it. I didn’t crash the day after but I chose not to run, and today I chose not to run either. Tomorrow I’m going to try and run but only if I feel it when I go on my walk.

One day at a time! It’s been so long that I’ve felt like this, it’s almost to good to be true. I’ll take what I can get through.

Joint Pain Gone

2009-03-28T14:53:00.000-07:00

Time to play a little catch up.

I slept through ALL last week. My day's consisted of waking up taking long hot oatmeal bath, rubbing cream from doctor all over body and sitting in front of fan butt naked to cool my burning skin. My hands were so swollen I could barely open the little packets of Benadryl. I would try and eat something quick before the Benadryl would kick in and then sleep for a good 5-6 hours. Then when I awoke I would do it all again about three times a day.

I thank the people who helped me take care of myself this last week. Without the dinners you brought me and the help I would not have made it through this one on my own!!! This last week was the hardest week physically that I have ever had. After these last two weeks I've chosen to throw the towel in and take another leave of absence from work. Thank god my boss is as understanding as he is.

I think it's interesting that in the last two weeks I only took 6 days worth of the IV drugs but my joint pain is completely gone. Sure the fatigue is still there and after literally sleeping through a whole week my legs don't really want to work, but the knee pain and ankle pain and back pain that would wake me up at night is completely gone... it's as if it has gone away over night.

I have not decided if this is a good thing or bad thing... I'm still attempting to wrap my brain around some of what is going on with this disease.

I'll take it as a blessing though! Today I went for a nice long walk under the protection of the clouds from the sun. (I can't let my skin see the sun for a little while after what it just went through) My dog was VERY happy to go with me. I love having her around.

Picc Line Info for New Patients

2009-03-19T20:05:00.001-07:00

Here are a couple things you should get if you have a picc line:

Arm cover (click here to go to the link)
I tried socks which kinda fell apart and aesthetically looked bad. I was ready to take a under armor shirt and make my own arm cover. I first went on a hunt for something, willing to try anything but a sock. I wish I had had this idea with my last treatment. This is for sports so it is very breathable and has "wicking" abilities. It's also much easier to get dressed in the morning because cloths can slip on and off of it without catching.

Picc Line Protector
THIS IS WORTH THE MONEY. It's not that much money and I can get it on and off on my own without help. I also don't have to stress about water. I can completely submerge my arm without any water getting into my picc line for risk of infection.

Treatment Update for March

2009-03-19T19:42:00.000-07:00

As my symptoms continued to get worse and new things appeared such as joint pain and more brain fog my doctor and I decided to do another treatment of IV antibiotics in hopes that one more time around might help me out.

It appears at this time that I am having the same interaction with the IV as I was with the oral antibiotics. I get worse on them, get off of them, get worse off them and then get on them again. My good days are fewer and farther between each other now that I am on the IV again.

I have decided to try and continue working through this treatment cycle because if I stay at home I don't know if I'll come out again. Last time I had a hard time attempting to reintroduce myself to the outside world after being inside for over two months. The other reason for me to try and work through this one is because my boss is not all that comfortable with me being out... sigh...

Picc line Placement:

Last Friday morning I went in and had the pick line placed. The tech did it this time and I have to suggest to anyone to always ask for the Doctor. Last time I had it placed the doctor did it without issue. This time, he had to stick me twice (when I say stick I mean they cut me open and attempted to place the line but "lost" my vain) The doctor was called in and he did it without issue. Skip the tech and go to the doctor.

Monday morning I noticed that my arm was itching a lot. I called the hospital where they placed it and told them about my reaction. My arm was red and swollen and very itchy. They got an appointment for me to come in first thing on Tuesday.

Tuesday morning, they looked at my arm and decided that I had developed an allergic reaction to the adhesive. They decided that they had to suture it into my arm for placement purposes. THAT HURT! Actually it's now Thursday and it still hurts. They placed a hypo allergenic cover over it which was supposed to help.

Wednesday morning, I went to get the dressing changed at my doctors office and they found that my arm had really reacted. It was very red and open sores had developed from the rash. It still is in the same condition despite my care. I mentioned to the doctor that I was having heart palpitations which I had not felt in my last treatment. He kinda freaked out and sent me to the ER with a slip asking them to monitor me and check the placement of the picc line. Needless, to say they had to move it. (ALWAYS ASK FOR THE DOCTOR TO PLACE YOUR PICC LINE)

Friday morning, (a week after placement of picc line) I called my doctors office to inform them that my arm had gotten to be more red and my skin had started to ooze. (sorry for the disgusting description) They asked me to come in right away. Once they saw my arm they had to take off the Hypo-allergenic adhesive protection thing and replace it with just gauze. They are a little freaked about just gauze and have instructed me to visit them once every three days to have it changed. I'm so very lucky my boss is so forgiving of my lack of appearance at work on time.

Saturday night, (a week and one day after picc line treatment) after dinner I started to notice that i was itching in odd places. I went to the restroom and discovered that I had little bug bites on the my legs and on my face. Later that night I found that i had them all over my body. They itched and burned and after consulting my nurse and doctor they decided that I had developed an allergic reaction to the medication. I awoke Sunday morning in the same condition and a little worse then the night before. This time around I can't seem to get a brake.

I've had a lot more complications. I am still very grateful that my doctor is willing to treat me. My insurance refuses to pay for it but honestly, I'm not better and I am extremely grateful to have had the help and understanding from my doctor. I'm lucky compared to others.

ADVANCED TOPICS IN LYME DISEASE

2009-03-16T08:22:00.000-07:00

DIAGNOSTIC HINTS AND TREATMENT
GUIDELINES FOR LYME AND OTHER
TICK BORNE ILLNESSES

Sixteenth Edition
Copyright October, 2008

JOSEPH J. BURRASCANO JR., M.D.

Board Member,
International Lyme and Associated
Diseases Society

https://docs.google.com/gview?a=gp&docid=e8d4ddaf5af8b6d8b1c608b2c79a4d84|f8dc635e81bc4e2f4f4488c29c189b89&chan=EQAAAAYfbQdcHniCHLpeUtfhQifRbAOx1kCMBqnRUfeLUnjy&thid=11ffe1b244410ead&attid=0.1

The only thing that I question about this information is that there are no references for supporting documentation in this paper.

Keeping Running

2009-03-10T13:30:00.000-07:00

Collection of information from others stories...

"I think I've probably had Lyme for a long time, maybe since I was really young. I have two daughters and both have had strange issues that could be Lyme-related - one with a congenital birth defect and one with bad colic (as an infant), asthma, and intermittent fevers/joint pains. Nonetheless, I've always been an athlete and really didn't feel the effects of the illness on my competitiveness until that past 6 years. A local journalist wrote an article in a Philly fitness magazine about my youngest daughter and my pre-Lyme athletic life here: http://www.phillyfit.com/Articles/3-06/Keepingrunning.pdf

I was finally diagnosed with Lyme and this past October after a couple years of obvious declining health. When I entered the Masters track and cross country ranks a few years back I noticed my running going down hill rather quickly, more so than many of the Masters-aged men and women I trained with. Several times over the past 6-8 years I thought I had over training syndrome (maybe Lyme?), and so I quit racing marathons and anything over a 10K. Plus, I started cross-training more, doing spin classes and swimming rather than just running/racing. I also started Dragon Boating with some friends and colleagues here on the Schuykill River in Philly last year (the only race I've done is Philly's Dragon Boat Festival!), and I'm hooked!

Then, in the last year, I started getting all kinds of weird symptoms that had me going from doctor to doctor, with all kinds of strange diagnoses (ms, anxiety disorder, thyroid issues, etc.). By last summer I couldn't run at all because of breathlessness, fatigue, heart palps and insomnia. It was all I could do to get out and take a walk with my friends. My anxiety level was through the roof, too, both physiologically and from not knowing what was wrong. After I started treating with antibiotics, sleep meds, and an antidepressant in October, I was able to sleep more and regain some energy and enthusiasm for exercise. So I started running occasionally between days of walking. Not much, just 2-3 miles at a time and really slow compared to my former pace.

In December I had my thryoid levels tested and my LLMD added T3 to my regimen; by January it really seemed to help! Now, in March, I can join my old running gang for portions of their long trail runs, maybe 40-50 minutes. I still don't run more than every 2-3 days, and I lift, walk or do spin classes on other days. I'm definitely not 100%, as I still have muscle twitching, night sweats, sore neck & shoulder, insomnia when I don't take sleep meds, deep bone pain in my thigh, etc., but at least I have the energy and where with all to exercise more vigorously again. And I am planning on doing the Philly Dragon Boat festival again this October. It's amazing to me how many high-level athletes I've met since figuring out I had this frickin' disease! I swear the fact that we've physically pushed ourselves so much must have something to do with our illness.

It sounds like a good idea to start with a realistic and low-key plan. I had to just give up all expectations about times, distance, etc and just learn how to just appreciate being able to run, no matter how slow and short a distance."

2009-03-04T10:33:00.001-08:00

Antidepressants & Lyme Disease

2009-03-03T10:06:00.000-08:00

My perspective on Antidepressants and Lyme:

"A Lyme Disease sufferer already has enough brain imbalances caused by the infection; taking a drug to induce more unnatural brain changes is obviously not a smart idea. Feeding brain chemistry-altering drugs to someone whose brain is already completely thrown off due to an infection can cause a confusing, dangerous roller coaster ride of symptoms." from http://lymebook.com/blog/the-recovery-process/depression/#more-94 I am still researching the information on this website and have not found it to have the clinical evidence that I would like just yet. Sometimes, good information that I find is surrounded by iffy information. I'm not yet confident in this websites info as of this date.

My current doctor (whom I trust with my Lyme disease fight so far) responded as such to my admittance to feeling extremely low, "That's good that you recognize that your feeling like this and it appears that your taking the steps that you need to too notify those around you. Understanding and accepting that your depressed gives you the ability to work with it and work past it. This is very normal. You should continue to recognize it daily. Your going to make it through this just fine." His response is one of the reasons why I like him as much as I do. He isn't just throwing meds at me.

The neurologist was another story all together. In just two short visits and over just two weeks he attempted to prescribe Ritalin, Cymbulta, and Pamelor. (ummm somethings not right!!!) Needless to say, I am searching for another neurologist to address my mental challenges with concentration and memory. I hope the next one can focus more on the task at hand.

Any athlete or active person would respond in the same way to feeling low. Go for a run or bike ride. Given that my outlet has been removed from my options I have had to find other ways to inspire myself. I had a hard time finding something...

My Living Situation:
I am single, supporting myself with no family in my area. The closest available family that I have is an 9 hour drive away. I have only but myself and my dog around me. This is both a blessing (not having a family to manage) and a curse (family does still provide support/ a reason outside yourself to continue fighting) I have friends in the area who are all extremely busy moving on in their lives attempting to build their empire in life. They have their own things to manage and reaching out to them is not a comfortable thing for me to do.

What Worked For Me:
I tried to push through everything on my own. It's now been almost 8 months of this roller coaster emotional/physical life. My friends have drifted further away and for good reason as my absence only naturally has this effect. I needed two things to get my mind up and running again:

1) I needed someone who understood to talk to honestly about my situation in a way where I don't feel like I am just complaining and being negative.

2) I needed to find something that I could do actively to get me out of my house as well as out of myself.

The answer to number one was easy. I fond people online and I found a Lyme Disease association in my area who got me into contact with other younger people going through the exact thing that I am currently.

The answer to number two was more difficult. For this, I decided that with all my extra time that I have while I am not in school or training for Triathlons/Marathons that I would invest in the younger generation. Today I was accepted to be an assistant coach for Girls On The Run in the DC metropolitan area. (http://www.girlsontherunofnova.org/) I'll be working with younger girls who are training for a 5K. These 3rd - 8th graders will kick my butt in any race, but I am OK with this.

The goal for my twice a week adventure with the girls is to be outside for an hour, soak up the excitement from the girls, and for just those short hours give myself something outside of my life monopolizing Lyme Disease. Maybe here is where the saying, "Those who can't do, Teach." comes into light.

Inspiration can be found in the oddest places I am finding. I encourage everyone who used to be athletic or active before Lyme to accept what condition their body/mind is in while on treatment for Lyme Disease (fighting it and over doing it can only hurt you in the long run) and find other ways to fill that void. Start out small. Slow and steady will win this race/fight to getting better.

A Friends E-Card

2009-03-02T19:42:00.000-08:00

Inspiration Can Be Found

2009-03-02T05:56:00.000-08:00

Emailed To Me From Another Fighter:

"You may not believe this, but you, and a couple other people who I exchange emails with who are going through the same things we are, are also my motivators.. Bet you never
thought you would be a motivator being as sick as you are. But its true. I read what others are going through and I get myself up and out and moving.

Please keep in touch...let me know the highs as well as the lows. "

I feel the exact same way he does with other people. Reading their stories has inspired me and helped in so many ways. Finding others who are going through the same thing, and worse makes all the difference in the world for me. It sounds like everyone says this, but I am not going crazy.

2009-02-28T14:33:00.000-08:00

Goals

2009-02-27T13:01:00.000-08:00

Short Term:

-Focus more on positive thinking daily
-Walk my dog daily (20min)
-Start keeping daily log
-Start reading a book at least an hour every other night (need a good book!!)

Long Term:

-100% back on feet in the next year!!!!
-Start Training again and find a sprint distance Tri for next season.
-Start running in races again. (start with small 5k's)
-Start school again and complete degree

The Start

2009-02-25T10:10:00.000-08:00

Age: 26
Sex: Women
Diagnosis of Lyme Disease: August 15th 2008

Pre-Lyme Activities:

-Competing in Running races (5k's, 10 Miles, half marathons)
-Competing in Triathlons (sprint & Olympic distance)
-Working avg 55 Hour weeks
-Student participating in two classes a semester
-Active with friends/ co-workers
-Participated in Corporate Team activities
-Avg book read per month 1-3

Current Activities:

-Working almost 35 hours per week in office
-One Social activities per week sometimes none
-Sleeping a lot