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.
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.
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!
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.
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 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!
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 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.
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 andglass 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!
"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.
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 deeprut and into the light again. Music can sooth the sole and is an amazingoutlet for so many things.
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...
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.
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.
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
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.
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!
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