alyson1derland: Life is Good

What could be better than waking up pain free after a restful night of sleep, with the sun shining in?

The promise of pumpkin pie!! This is going to be a very good day!

Lyme Beast: Something Has Got to Give

I make beautiful, fabulous notes for class.  However, becaues of how utterly exhausted I am after an exam (and how so effing convenient that my exams are lining up with Herx reactions!!) I generally only get them completely wrapped up to my satisfaction about 15 hours or so before the exam.  That pisses me off to no end. 

These kinds of notes should get me an effing A.  Instead, I'm C/B territory because I'm juggling coming out of a craptastic weekend with having to test for two days straight. 

I slept almost 18 hours straight on Saturday.  From 2 am to 10 pm.  That is ridiculous. 

I have to start being more aggressive about getting my work done early.  So that I can spend the weekend before the test lying in bed and not worrying about if I am going to pass or not.  Jeez. 

Lyme Beast: Sleepy, Sleepy

So I have two major days of testing next week over 5 subjects.  And I'm going to kick the snot out of it and sleep afterwards. 

BUT.

All week long I have really been pushing myself, working on stuff ALL the time.  It caught up to me yesterday around 2 am.  I started not being able to type properly.  Misreading.  And it just got worse. 

So I went to sleep, thinking I would wake up in a few hours.  Haha.  I slept from 2 am until 10 pm.  I woke up for going to the bathroom, eating a bit, and feeding the ponies.  Otherwise it was a total crash.

While I feel a little annoyed (well...ALOT!!!!) that I missed some studying time, I still have to respect the fact that I have been pushing like a mofo.  I mean, seriously, I would rather have this kind of sleeping crash happen on a Saturday than on Monday or Tuesday.  Now that I have like 17 hours of sleep under my belt I am feeling like going back at it. 

I am also daydreaming about sleeping from Tuesday night to Saturday.  :) 

alyson1derland: Sigh

Longing for the time when my days aren't all described with the word intense...

Lyme Beast: When One Day is Too Much

I have recently learned when one day is too much.  When one day of pushing yourself makes you fall in bed for two days.  When trying to act normal turns out to be a royal 'effin fail. 

I have to keep in mind that I am sick.  I don't look sick.  Somedays I don't feel as bad as I did before.  But it is on those days--those days when for an hour or three I think I could do so many more things--that I really need to be careful.  Because those dreamed of tasks demand a very high price. 

I have to focus on improving slowly and carefully.  Like bringing a favorite horse back from an injury, it is ok to be patient.  It is ok to have to wait.  It is ok to realize yeah, I need to sleep all day on Saturdays to compensate for the stress of school. 

But while I am lying in bed, I am practicing riding.  I am perfecting my transitions, envisioning them fluid and soft and so effortlessly straight.  I am finding expressive medium gaits in my mares, and springing from a beautiful collected trot into flowing, elegant extensions.  I practice half passes while I walk to class.  In my car, I am developing the tempo in movements, and visualizing a sweeping, lofty gallop that carries us over fences as if we had wings. 

Now, I am quiet.  My legs hurt.  I am tired after walking around feeding my horses.  The detail oriented perfectionist is hidden away, as I forget my jackets and hats in and around the stalls, the turnout sheets over the gates, and the various stirring implements for the grain in odd places.  But I am capable of getting up--of feeding the girls, of preparing their grain and hay and water.  Of cleaning one stall regularly.  That is an improvement. 

It is a far cry from dancing through the dressage portion of a recognized event, or floating over the cross country portion on my eventing-bred Trakehner (who injured herself in the pasture like the total diva she is).  It is not the slow build up of lungs and bone and sinew that is necessary for such things.  But it is an improvement from the vertigo, from the nausea and shaking of hands and legs and fingers that has detailed my life. 

Life will continue to improve.  And I will continue riding every day, in my mind, practicing all the things I would be doing if Lymes would let me.

When I am healthy again...

When I am healthy again...
I will go caving with my brother.
I will go hiking/camping.
I will own my own horse again.
I will do photo shoots.
I will go to Massage Therapy School, so I can help others who are hurting.

But while I am waiting....
I will keep blogging.
I will continue to perfect the Too Late To Turn Back Pineapple Chili recipe with my friend.
I will edit my jillions of photos on my computer.
I will continue to learn the names of the muscles, etc. that are hurting at any given moment (soleus, iliotibial band, gastrocnemius...).
I will hug the horses at the barn, knowing that someday soon my special pony will be there waiting for me and I will be well enough to take care of him.
I will spread awareness for Lyme Disease.
I will enjoy Skype dates with my friends.
I will not give up!

alyson1derland: New CDC Guidelines

The CDC recently changed their guidelines for diagnosing Lyme Disease. You must now have at LEAST 10 out of 12 of the following symptoms:

-you can identify all of the people on the Urgent Care billboard

-when you lose an item (book, shoe, etc.), the first place you look for it is in the fridge (and chances are good that it's there!)

-you attempt to drink your child's watercolor paint water because it looks exactly like one of your homeopathic remedies

-an epsom salt bath means the perfect opportunity for you to catch up on bills, texts, emails, writing your life story, etc.

-you eat more food than a teenage boy and a pregnant woman combined, and still have the physique of an Olsen twin

-you can call your doctor's office and leave the message, "Hey it's me; Call me back," and they do

-you take more pills a day than all of your grandparents combined

-you spend so much time in your bed that you've created a dent shaped exactly like you

-you get really excited when you break your personal record for giving the most vials of blood at your doctor's office

-you have a stockpile of household items next to your bed that you use daily for self-massage (and you NEVER leave your house without your wooden egg or miniature rolling pin!)

-you have way more experience doling out your medicine than a pharmacist

-your weight and your body temperature are easy to remember, because they are the same

alyson1derland: Herxing

Oh, those crazy spirochetes (the little spiral shaped organisms in the picture responsible for causing Lyme Disease)! They always want to have the last word. When you begin your attack on them with antibiotics and they begin dying off, they don't just die silently. Oh, no! They want to go out with a bang! So they release a toxin into your body that makes you sicker than you ever thought possible. This is called a Herxheimer reaction, or a Herx. Welcome, my friend, to hell on earth!

My doctor recently gave me the green light to start back up on Azithromycin. I never thought I would jump for joy at the thought of taking antibiotics again, but I am so happy to be back in treatment again! I felt so good on this medicine, and I'm very hopeful it will help me get back on my feet again. But with this good news comes the reality that Herxing makes me want to spin a cocoon around myself and not come out for a very long time.

Herxing typically lasts anywhere from a few days to a few weeks, while your body works extra hard to get rid of the sudden surge of toxins. My job is to help my body by doing everything under the sun to help flush out all of the extra toxins. I drink water with lemon in it. I take epsom salt and clove oil baths. I have a mini trampoline which I bounce on (VERY, very lightly), which helps the lymphatic system. I drink down homeopathic remedies and various other concoctions. I get weekly massages.

Since, unfortunately, I can't actually spin a cocoon around myself, I do what I now do best: burrow deep into my covers in the Alyson-shaped dent I've created in my bed, and wait for the Herx to end so that I can, hopefully, get some much needed relief from this medicine.

alyson1derland: Failure to Thrive

Failure to thrive. Those three words have come back to haunt me once again. For almost a year, my youngest child was labeled failure to thrive. There are no words to describe how helpless I felt, watching my baby's growth flat line month after month. While all of the doctors agreed with the failure to thrive diagnosis, none could ever find a cause for it. When I got my Lyme diagnosis a few months ago, we finally put two and two together and tested him for Lyme Disease. He tested positive.

But this post is not about him. He is no longer failure to thrive. This time it is me.

When my doctor told me yesterday that I was failure to thrive, I felt like all of the air was being sucked right out of me. Yet it couldn't be more true. I'm down to 101 lbs, my hair is falling out by the handful, I'm housebound, and every time I so much as blink, I have to run for the bathroom. But hearing it put into words is a whole new ball game. Now it feels, well, real.

I want to get better. I want to thrive again. But I want it NOW! I'm tired of being patient. I won't sugar coat it; today is a tough day. It looks like my optimism is failing to thrive, too. I guess I need to go back and read my previous post: http://lymebeast.blogspot.com/2010/11/caught-in-rip-current.html

Lyme Beast: Argh

That is an accurate description of the last 24 hours.  I wandered off to lab yesterday, and came home fully expecting to get some work done.  Lo and behold, literally within a half hour or so of taking my medication I was nauseated.  I ended up yakking in the sink (closest thing!!) twice. 

After the second yak attack, I partook of the Miracle Gummy Bear Cure.  This involves slowly nibbling on a gummy bear while thinking calming thoughts to your stomach!  :) It worked, but my night of studying was gone.

I had a slow start this morning as I had some residual nausea.  I only attend required classes and was grateful that I didn't have to be anywhere today beyond my study room. 

I got some work done today, but now I'm going to rest for a bit.  It is 4:30, my normal low energy time.  I do have to admit that it is nice to be able to choose to nap at this time instead of going OMG I AM GOING TO FALL ON MY FACE UNLESS I LIE DOWN AND SLEEEEEEP!! Improvements...I will take them, however small!

In other news, my old horse is mysteriosly ill with a very large inflamed lymph node by her right jowl.  She went off her food and I am coaxing her into eating softened food with antibiotics by shredding nearly a pound of carrots in the blender per feeding.  That is a lot of carrots.  I think my blender will be permanently orange after this is done!!

alyson1derland: Caught in a Rip Current

Having Lyme Disease is like being caught in a rip current. I can see the shore; I can see my friends and family standing there waving to me, but no matter how hard I try to swim back to them, back to my old life, I'm just treading water.

In order to make it out of this rip current, my Lyme Disease, I have to be willing to swim parallel to the shore, not toward it. It doesn't seem logical. I can see my old life right in front of my eyes, and I want to swim as fast as I can straight toward it, but it is like a mirage. The more I grasp for a life I cannot have right now, the more it disappears. Peace and acceptance are hard to come by, but I am slowly learning their ways.

In order to have the things I want most in my life right now, I have to give them up. Not forever, but for now, because my body simply needs rest.

It seems odd that being static can make you grow the most. Like a person thrashing to get out of a rip current, my instinct is to run straight back to where I was before I got sick. I want to be the person I used to be, and do the things I used to do again. But I can't. I can't run toward that, because I am on a different journey. Physically, I am weaker than I have ever been in my life. Mentally, I am stronger than I've ever been in my life. So, I'm learning to stop thrashing and step out of the way so my body can do its job.

Lyme Beast: The Diagnosis In Numbers

Lyme By Numbers:

1. Woke up one day with hands and feet swollen to the point where I could barely walk. Excruciating pain, to the point of crying when I had to stand. 

2. Visited some GPs, and requested a battery of tests, including Lymes.  Lymes was negative.

3. Diagnosed with RA, and put on a high regimen of steroids as it was the only thing capable of relieving the swelling and making me able to walk again.  I was unable to run, ride my horse, or think.  I had the summer to go before medical school started.

4. Referred to a rheumatologist.  He ran me for everything under the sun.  At one point I recall giving up 14 tubes of blood for tests.  He considered lupus, but decided on RA, despite no family history, no previous occurence, etc.

5. Given sulfasalazine and steroids.  Sulfasalazine made my hair fall out.  Steroids made my face swell until I did not recognize the face in the mirror.

6. School was torture.  I still couldn't walk without pain, and crossing two parking lots to my seat in the back of the class was a twice daily torture I dreaded.  I was often a few minutes late for class, because it often took me twice as long to walk to my seat from my car. 
          *Note: I somehow finished the capstone paper for my second bacclaureate degree during the summer. I have no recollection of it, other than a bunch of documents on my old laptop and some vague ideas of going to the library and some embarrassment that I was always not on top of stuff.*

7. I couldn't think, or sleep, or study.  Words did not make sense.  I could read a lecture, and then the next day it was as if I had never seen the material before.  It was frightening, but I shoved the thoughts under the mattress and kept doggedly going to class.

8. My husband left, my bank account was drained, and I physically could not endure any more. I began to fast, as the lightheadedness afforded me some respite from pain and I could not afford to buy food. 

9. The day after Thanksgiving, my super hero mother swept in and took charge.  She is a lioness of a woman: here was her star of a daughter, reduced to a skeleton, not eating, somehow managing to drag herself out to feed the animals and go to class.  I remember that she said when she came, I just slept.  And slept.  And slept.  I don't remember. 

10.  Somehow my Lion of a Mother managed to pay the bills, improve my health, and keep herself going.  I still don't know how she did it, and am (and will always be) impressed and grateful. 

11. M. came into the picture, and encouraged me every day to get better.  He took over the huge task of managing my every day improvement through daily sleeps, paresthesias, doctor appointments, medication-induced illness, etc. He is the man. 

12. Today, I currently have a B in histology and a very good C in biochemistry.  I failed anatomy with flying colors, which I attribute to being on Biaxin/Planaquil and not having testing accomodations.  The results of that class pushed me to be brave enough to go on Bicillin LA IM, which at 1.2 million units a shot 3x a week is like using a machine gun instead of nerf balls to kill the lyme bugs.  (That beast hits the blood brain barrier, which is where a major load of my bugs were as I had neuro symptoms.)

A former English and science double major in college, I now have the writing skills of a fifth grader.  My tenses and word choices are often skewed, and I have to use spell check all. the. time.  Keep in mind, I was a person that could sit down and produce a very good 10 page paper in a few hours, which was often gramatically perfect and needed only a revision or two in terms of translation from science terms into more accessible verbiage.

My ability to learn has completely changed.  While previously I was a very visual learner, getting most of my material from reading, now I have to rely on my kinesthetic skills a LOT.  I have to go through the material and break it down into tiny pieces.  I transform the tiny pieces into questions in a table.  I have to change the format of the table to alternating color bars as I have trouble reading long blocks of sentences and certain types of fonts.  Then by the time I have painstakingly gone through each lecture and created 10 pages of questions I can go back and carefully read and re-read, developing associations for each concept.  

I look at my classmates and wonder what it would be like to be able to think again, to have real confidence in knowing what you know.  I lost that through this disease, and fear having to press for testing accomodations for years to compensate for my slower thought processing and thinking. 

The bottom line:

• Recovery is possible.
• I like my life now much better than before--I am not the servant of someone else, and I have a much better and stronger relationship with my family and my new boyfriend than before.
• I really appreciate being able to do a few things, and having days without pain.
• I dream of riding my horses at the level I did before, and am slowly closing in the care gaps that were created by my illness (for example, their feet were trimmed erratically during last year and need consistent touch ups to improve).  I did a little bit of riding this last summer, which was disappointing due to my physical weakness and inability to really do anything (for instance, I almost fainted while cantering my schoolmaster in a w/t/c class!!!).  Getting on a horse now I'm still not as strong as I was before, but can think of actually riding a bit instead of falling off due to pain or lightheadedness.
• I have a lot of confidence in my physical ability to overcome adversity.  Events that would have rattled me to the core before my illness now just make me shrug and move on.   

Lyme Beast: A Year in Review

The time is drawing close to when I took medical leave from school last year. 
Last year, my husband walked out.
I had acquired the ridiculous flu of the moment, and remember being curled under layers of blankets, shaking with chills, and listening to him complain about how the house was messy, the dishes were dirty, and there was nothing to eat.
As you can probably easily tell, I am so better off now.  :)

At the end of November, my bank funds were drained and I had to rely on my family (specifically, my fabulous mom) for help.  It took the combined financial help of my parents and my boyfriend to finagle enough money to pay the bills, feed the horses, and buy my medications.

Lymes is an expensive disease.  It requires a lot of money to buy the antibiotics that are effective in treating it, as most insurance companies turn up their noses at paying for the cost of such strange medications.  It takes a lot of money to keep a house going when a person gets ill, especially if they had been the main (or only) breadwinner.  It takes a lot out of the support system of that ill person to watch them battle this unending disease, as some days they would get a fleeting glimpse of that person pre-illness, and then suddenly it was back to being bed ridden 24/7. 

I had a seizure. 

After that, the unanimous decision was made to start oral doxycycline even though my test results were still a few weeks away.  I was bed ridden, and slept almost 20 out of 24 hours.  I woke up to see my friend M., who would come over, bundle me up in his truck, and let me drive while he shoveled silage to his cows.  I thought it would be cute to shovel the first day, ignoring the tremors in my legs and the vertigo that made my world appear a crazed fun house.  I ended up on my butt in the soft chopped corn, looking at the wide eyes of the cows around me. 

But without the unending, ferocious help of my mother, I would not have recovered. 
She paid bills.
She forced medications down my uncooperative self. 
She took me to doctor appointments.
She fed my pets in the worst winter of the decade. 
In short, she is awesome. 

While I was a rather unpleasant patient, growling at her all the time, looking back I know she was the key to my improvement.  Although I probably could have been the poster child for Lyme Rage, she still put up with me.  :)

The other consistent factor in my life was and is my supportative boyfriend M.  My marriage, in a word, sucked as I was the caretaker of a very spoiled, indulged man-child.  I honestly don't know how I dealt with that for so long, but think that it was probably due to my single minded dedication to getting into medical school.  Dealing with a sick wife in medical school and animals and this strange half built house was more than that city boy was capable of, and I have benefitted so much because of that.  While at the time it hurt unbelievably, I would not have really been open to dating M., or learned what a considerate, caring person he is.  (I like to think I make him happy too lol!)

M. takes care of the day to day burden of making sure I sleep enough, eat enough, take my medication, and go to class PLUS dealing with all the animal drama.  I'm lucky he is a farm boy, and no stranger to hard work! Heck, I'm just lucky to have him. 

I think where my Lyme brain is going with this is to highlight that recovery is not a stagnant process.  Like raising a village, recovery from this disease is a group fight.  I look at my family around me and see that instead of breaking us apart, Lymes has made me appreciate them so much more. 

alyson1derland: A Girl Without A Pony Is Like A Tick Without Borrelia Bergdorferi

All of my life, horses have been magical to me. At a very young age, I started begging my parents for a pony. Sadly, sticking a pony in our tiny backyard (within the city limits) wasn't doable, or legal for that matter, but my poor broken heart couldn't fathom why my parents would choose to torture me by denying me my heart's desire of having my very own pony.

When I was in my mid-twenties, I finally got my foot in the door (er, gate) to the world of horses. I convinced my husband to let me take (very expensive!) riding lessons. Once a week, for one hour, my lifelong dream of being atop a real live horse came true!

I quickly noticed that something peculiar would happen when I was on the horses. When I was riding, if I was sick, my symptoms would disappear. But the second I would step back onto the ground, whatever symptoms I had would come back. For instance, if I had a headache it would be gone while I rode, but when my boots swung out of the stirrups and I landed back on the ground, my headache would be instantly back.

This happened to me many times. Be it a cold, asthma, anxiety, you name it and it would disappear. These magical ponies that I dreamed of all of my life were performing their own magic trick for me. In return, I did the one thing I could think of to thank them: I paid them back in peppermints.

On a cold and rainy winter day, my lifelong dream came true, and I got my very own dream pony. I loved my dear Shiloh for 5 wonderful years before she passed away at the ripe old age of 30. She carried me through so many things: my spouse in law school, the birth of my second child (okay, so she didn't actually CARRY me through that!), depression, anxiety, etc. Just like the horses I took riding lessons on, my problems melted away atop my swaybacked Appaloosa.

I have been well enough to ride horses only a handful of times since I got sick, but something about the magic of the horses shifted since I developed Lyme Disease. They were no longer able to carry me away from my pain. My joints still ached. My anxiety was still there. I was still depressed about being chronically ill. After years of horses taking my pain away from me, what was going on?

With this illness, I have had to tap into incredible amounts of strength deep inside of me to make it through my pain. Maybe the horses began to sense a change in me. Inside, I am so much stronger now than I ever was when I was "healthy." I am a much more positive person. I try not to take life for granted so much. I think the horses understood that I was finally ready to carry myself, ironically at a time when I could barely walk on my own two feet.

The reality of my illness is that I am not able to take care of another horse anytime soon. But the dream of one day owning my own horse once again carries me through my hard times. I KNOW I will be well again. I will fight with every last ounce I have to accomplish this dream. And this time, I will be stronger. I will not need my horse to carry me away from anything. We will ride off on our new adventure, girl and horse.

I am fighting for you, Dream Pony!

PS I will still be putting "a pony" on my Christmas list this year, just in case...

alyson1derland: Lyme Disease or Pajama Party? You Be the Judge!

Lyme Disease may not be a walk in the park. However, if you look very carefully (and some days you have to look VERY carefully), there are actually a few perks of having your body invaded by a boatload of bizarre creatures known as spirochetes. For example, due to the fact that I have crippling memory loss, you can tell me your good news over and over again, and I will get just as excited for you each time you tell me! My friends love testing this theory on me. Go ahead, try it!

Another perk of Lyme Disease for me is that, since I'm on a dreadfully restricted diet (gluten free and dairy free), I get to eat like a teenage boy in order to keep my weight up. I have breakfast, second breakfast, lunch, second lunch, you get the picture! Hands down, second breakfast is my favorite meal of the day. And thanks to Lyme Disease, I still get to keep my svelte figure!

One more bonus of Borrelia Berdorferi (aka my old pal, Lyme Disease) is that since I got sick, I got a written prescription to have a pajama party all day long, every day! I have quite the extensive collection of pj's. I have pajamas with Santas, apples, gnomes, Christmas trees, pumpkins, etc. Some people take great pride in picking out their outfit for the day (yawn!); I get to choose from a pile of fun and happy pajamas. Who says Lyme Disease doesn't have it's benefits?!