Information is Power

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?

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

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

Who Will Comfort Me - Melody Gardot

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...

Running Raw: Deer Ticks and Lyme Disease

The REAL September Update

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

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.