Finals and Air Hunger

Hello my followers!

It’s about time I gave you all an update.  The crazy-busy semester has been coming to a close, with finals next week.  I’m on track to get A’s in all my classes, however; my math final may ruin the streak for this semester.  We shall see.  :)

As for my continual progress with Lyme disease, I’m taking steps forward and backwards. I’m having a very difficult time keeping consistent with taking my pills.  In my last appointment, we upped the dosage of my doxycycline and Cefidnir higher than I’ve ever taken them before.  The Cefdinir I’m taking three times a day, and it is a tough pill to take.  The side effects are awful.  Every time I take it, I feel nauseous, dizzy, exhausted, and a lose my appetite.  I am, however, working hard to continue my fight against Lyme.  I bought a Pilates dvd, and intend to get in the habit of using it.  Although taking my pills is hard, I’m trying my best and I’m finding it easier to do so now that my classes are winding down.

In the past couple days, I’ve had spells of great difficulty breathing. Each breath I take leaves me unsatisfied.  :(  I’ve been short of breath, experiencing air hunger in the past; however, I’ve never experienced it at this level.  I’ll be calling my doctor tomorrow to see what she wants to do.  It seems from a little internet searching, I may be in need of either iron supplements or oxygen.  O.o

“Air hunger” is a symptom of Babesia and Bartonella–common co-infections with Lyme disease.

We’ll see what the doc says.  I’d appreciate your prayers, as breathing seems to be a very important function of day to day living, and not being able to do it efficiently is uncomfortable.

Thank you <3

~Lymediseasewarrior

Progress Update!

bright future

Yesterday I had the opportunity to visit with my Lyme doctor once more.  The visit was mostly positive, and we both feel that I am still on track with recovery.

Upon visual examination, my doctor was concerned that my left eyelids were contracting more than my right.  After asking me several questions, she became concerned that I may be experiencing a touch of Bell’s palsy–facial paralysis on one side of the face.  She was not overly concerned, however; as I am continuing to progress with recovery and Bell’s palsy typically clears up on its own.

She was more concerned about the debilitating menstrual cramps I’ve been suffering, and the fact that I still miss school and work even on Tylenol and Advil due to these pains.  So she decided to run some tests to determine a cause.  As odd as it sounds, I’m hoping I have one of those things, because they can account for joint pain too, and they’re curable.  So if I have it, maybe I don’t have arthritis and I can get rid of ALL my symptoms.  But we’ll see.

As for my joint pain, it’s been pretty consistently there; always much worse when it’s about to rain.  We’re still puzzling out what that could be.  It’s possible it’s arthritis, sparked by but not related to Lyme; or it could be Lyme arthritis, which would mean I still have Lyme; or it could be one of those other things we’re testing for.  We shall see.  We are running the Lyme tests again to determine if I still show signs of an active infection, along with tests for arthritis and other conditions that may cause these problems.

In the end, we decided to move forward with changing up my pill regimen.  She took me off three different medicines, put me back on one, and now I take 19 less individual pills each week.  Currently I’m on Famciclovir, Doxycycline, Fluconazole, Acyclovir, and Cefdinir.

For supplements I’m taking Vitamin C, E, D3, and K; garlic oil, evening primrose oil, selenium, manganese, zinc piccolinate, bromelain, Kaprycidin-A, Methyl Guard, Co-enzyme B Complex, SamE, Omega 3 Fatty acids, veggie capsules, loratadine, milk thistle, Metagenics Ultraclear Plus, Grapefruit seed extract, colostrum and probiotics.  And to help me sleep I take melatonin, Tylenol PM, and L-Theanine.  That may seem like a long list, but I’m taking a little less than I used to, and where I used to take some of these things three times a day I now only take them once or twice.

As for life in general, everything continues to increase in wonderfulness.  I am in my last semester of college.  I will be graduating next month with an Associate’s in Communications and a Certificate in Medical Office Reception.  I have a whopping class load of 21 units!  Yes, you read that right.

If you’ve been following my blog for a while, you’ll know that it wasn’t that long ago that I struggled with 6 units of online classes.  Well, I’ve come a long way!  :)  My brain is working again, and I find myself excelling like I used to do.  I’m known as the smart student in all but my math class (which was never my strong subject anyways), and am frequently entreated for help by the other students.  Three different professors have told me how impressed they are with my intelligence, self-confidence, and work ethic, and have stated that I will “go far in life.”  I cannot tell you how much hearing those words means to me.  I went from struggling to string together one on-topic, coherent paragraph in less than three hours, to being able to write essays and speeches galore without a hitch. I can drive to and from school, and event he longer distances to my doctor’s appointments.  I remember things, can think with clarity, and can communicate coherently. I am enjoying life!  I look forward to tomorrows, I’m excited for a new day.  I have dreams and goals, and I am working to achieve them!  I tell you, long-term antibiotics work and I am living proof of that.

So hang in there, Lymies!  There is a light at the end of the tunnel.  And if you need anything; prayer, advice, encouragement–shoot me an email or comment below.  I’d love to help you out on your journey, just as so many of you helped me on mine. (lymelightfight@gmail.com)

Love you all,

~LymeDiseaseWarrior
lymelightfight@gmail.com

Best Appointment Ever—The Final Phase?

finish line

Today I met with my Lyme doctor.  She and her staff were pleasantly surprised to hear me shout “fantastic!” when they asked how I’ve been doing.  I proceeded to inform them of how I’m doing.  I’m taking seven classes this semester, twenty-one units.  And I love it.  I’m on top of all my homework, I’m even ahead!  I can read, write, listen, take notes, and understand to a level I have not been at since before I had Lyme.  I’m the smart student in the class again.  I have other students asking me for help, and not the other way around.  I’m known as the person to beat in my debate class.  I’m going to graduate come May.  Following graduation I’ll start in an internship for Medical Office Reception, after which given my experience I should have no problem finding a job offer.

When I filled out my symptom sheet, I put zeros where once there were sevens.  In fact, I only marked two symptoms; joint pain and stiffness.  And those were only a two.

After hearing everything, and examining my labs, my Doctor was thrilled to say how proud she is of me.  She is thrilled with how far I’ve come, and how quickly considering it can take many years to cure Lyme disease.  She was pleased to report that my most recent labs showed almost no inflammation in my body.  I have not had a clear inflammation reading in seven years.  It’s a big deal.

She did say that my joint pain could be arthritis, initiated by Lyme, but not caused by it.  Or it could still be just a touch of Lyme that my body is working on.  In other words, my joint pain may never go away, I may already have beat Lyme.  But I don’t care if it stays, it’s so manageable now compared to before.  And it only ever really acts up when it rains.  And I’ve developed a high pain tolerance.

But did you catch that?  She said I might be done.  I MIGHT BE DONE WITH LYME DISEASE.  I BEAT IT, FOLKS!  I WON!!  Either that or I’m reeeeeeally close.

She wants to initiate the final phase of Lyme treatment.  She’s hinted at it before, but this is the first time it’s actually on the table as part of our plan.  Starting after the semester, since we don’t want to disrupt my busy schedule, and as long as everything continues to go well, we will start pulsating my antibiotics.  Meaning I’ll go on them for a week or two, then go off, and then on, and so on.  After pulsating for a few months, I go off them.   I STOP TAKING PILLS. O.O  And then we wait and see. . . And if all goes well, (PLEASE PLEASE GO WELL) I’ll have taken my last pill for Lyme.

She described it as, “I can see you are very near 100%.”  Three years ago I would have said “30%” if you asked me the level of my health.  I’ve gone up almost 70% in the past two years that I’ve been on treatment for Lyme.  It’s been the longest, hardest journey I will probably ever take.  And it was worth every minute.

As I drove away from the office, I burst into tears of sheer joy.  I could not believe the amazing blessings God has given me.  For seven years I have fought this disease.  And for five of those years I thought I would never have a good life.  As my health worsened, my big dreams and plans dwindled down to nothing, to the point that I could only see a future for me as a lonely invalid.  I even thought I might die.  Then I started on my Lyme treatment, and my dreams began to grow again.  And grow and grow they did until two years later now when I am filled with joy and hope for my future.  I am excited for tomorrow, for next week, next month–for every year to come!

My experience with Lyme has prepared me for anything the future may hold.  I have overcome fear, anger, anxiety, depression, pain, and nearly every symptom you could imagine.  And through it all I have learned patience, love, joy, perseverance, and faith.  I have discovered and developed an inner strength and fortitude hardened by the pangs of illness.  It will keep me going throughout my life.

Thank you, my readers, for coming along with me on my journey so far.  Your comments, likes, and even just a ‘view’ have all been so encouraging to me along my the way.  Having your support and encouragement has meant the world to me!  Please continue to support me as I enter the final phase in the next few months. :)

For those of you who are Lymies, I say stick with it!  Lyme disease CAN be cured.  I know it’s hard and it seems like it takes for ever, but keep fighting.  A bright future is ahead. Let’s beat Lyme together!

~LymeDiseaseWarrior

P.s. Questions?  Comments?  Stories to share? Contact me at: lymelightfight@gmail.com

Grandma Has Passed

A lot has happened since my last post.

My dear, wonderful Grandma passed away.  Her passing was traumatic and agonizing.  She had a series of heart attacks before slipping into a coma and finally passing.  I have never gone through a more difficult time then the night of her last heart attack.  She was in so much pain, and there was nothing more we could do than what we’d already done.  We watched her die over and over again, with each heart attack.  It was a long and awful goodbye.   And yet I’m happy for the times in between when she still had the brightest smile and warmest hug.  We have lived with her since before I was born.  We were very close.  She would often confide in me after receiving her diagnosis of Alzheimer’s.  I knew much of her struggle, and I did my best to support her.

She was an incredible woman.  She grew up dirt poor, and although she lived a comfortable life as an adult, she never had much to spare.  And yet she was the most generous person I have ever met.  Baking cupcakes for firemen, giving money to veteran charities, donating to her church.  She extended love to everyone, no matter what walk of life they came from, no matter their social standing; it didn’t even matter if she knew them or if they were a stranger passing by on the street. She hugged everybody.  Firemen, policemen, homeless people, grocery store clerks, people with nice sweaters, and anyone with a baby.  Her love was unconditional.

I miss her so much, and really, I always will.  The pain of her passing will fade, but the memories of my beautiful Grandma never will.

Black Friday Vitamin Steals

It’s not too late!  If you’re one to take a lot of vitamins and supplements, you canNOT pass up these deals.

Tip:  Cross-reference each site, because the deals are different at each one.

1. PureFormulas (my favorite vitamin company) is having 20% off your entire purchase price!!  Plus, if you spend $100, they take off another $10!  :)  Free shipping on every order.

2. Vitamin World is having 40% off your entire purchase price!  But what’s really special at this site are their door-buster items.  80% off select items.  Tip:  If your stocks are pretty full, you might consider waiting on some of their items.  They have BOGOs every few months or so, which ends up being a better deal than the 40%. But if you think you’ll run out before then, grab it now! :)  Free shipping on every purchase.

3. Vitacost is having a ton of doorbuster items.  If they’ve got one of your favorites on that list, you might just save a lot! :)  If you spend $25 on a vitacost brand, you get next-day free shipping.

I personally spent about $300 across these three sites and ended up saving $150-200.  Now I’m squared away for at least 4-6 months, depending on the vitamin. :)

Good luck on your shopping!

~LymeDiseaseWarrior

 

Ten Real Life Struggles of Having a Chronic Illness

Having a chronic illness is like having a full-time job.  But a lot of healthy people just don’t understand what it’s like.  So, read the following list of real life struggles of having a chronic illness and you’ll be able to understand a chronic just a little better.

1. Being a flake.

flakey friend

Me:  Hey, so I know I said I could hang out this weekend, but actually I’m not feeling so good so I’ll have to cancel.

Friend:  Oh, okay.  That’s fine!  We can totally do it another time.  I’ll call you.

*never calls*  *end of another “friendship”*

Having friends is difficult to do when you have a chronic illness.  We never know when we’re going to feel good, or better, so making and keeping plans is hard to do.  And if you cancel plans enough times, people stop making them with you.  A chronic will often get sidelined, as they sit in their house and focus on survival and recovery, we often get forgotten about.  It’s tough to be always dropping the ball, never being able to be there for people when they need us.  It’s hard letting people down all the time, and sometimes it’s just easier not to have friends because then you can’t let them down.

2. People giving you food. . . That you can’t eat.

gluten free birthday cake

Friend:  I know you’ve been having a hard time lately, so I bought you your favorite candy bar.

Me: Thanks. . . I can’t eat sugar. . .

Friend:  I want to make you a meal.  I was thinking of lasagna?

Me:  That’s so great except I can’t really do all that dairy. . . or white flour. . . or you know, fat.  So. . .

I appreciate the gesture, I do.  It makes me really happy that someone went out of their way to cook/bake something that they thought would brighten my day.  :)  But if they just went a liiiiittle farther out of their way, they could find out what I can and cannot eat.  Then not only would I have the appreciation for the gesture, but I would also get to enjoy the food!  :)

I’ve found it’s just a lot easier to accept whatever someone gives me, and then either throw it away or just ‘re-gift’ it to someone else.

3.  Being called ‘lazy’ and ‘out of shape’.

chronic illness cat lazy

Some people don’t understand a chronic illness.  I’ve been called lazy, couch potato, out of shape, the laziest person alive, along with other comments such as “do you ever leave the house”, “do you ever leave the couch”, “that much sleep canNOT be good for you.”

I don’t think I’m lazy.  I don’t exercise a lot because my chronic pain intensifies when I do.  And I sometimes skip out on an event because I know I’ll have to leave early and I don’t want to make the people I drive with angry.  And I always have other people open things because twisting and gripping can really hurt.

I have a chronic illness.  I often do not feel well.  I live with what feels like a mild and sometimes not-so-mild flu.  And I have chronic pain, in all of my joints, all of the time. So really, if I do anything besides lay in bed all day, I’m the exact opposite of lazy.  If I was lazy, I could use my illness as an excuse and just stay at home and mooch off my parents.  But I don’t.  I work two jobs and I’m taking to college classes.  That’s a lot.

4. Being really picky about bathrooms.

bathroom

Okay, so not to be too gross, but sometimes a chronic illness can involve certain digestive problems.  Which means we may spend a little more time in the bathroom than most people do.  Which makes us very picky about bathrooms.

On campus, I know where all the good bathrooms are.  And I will walk further to pass up on the ones I don’t like. I know which ones always smell, which ones have long lines, etc.

Not only that, but the bathroom is like a little escape zone.  If I need a break from socialization or focusing, I’ll disappear into the bathroom. If I need to take my pills and I don’t feel comfortable in the setting I’m in, I’ll slip into the bathroom and take them there.

So basically, I’m a bathroom snob.  It must smell nice, look clean, have wide stalls (I get claustrophobic), a counter to help with pill taking, a clean mirror, soft lighting (fluorescent lighting makes me pale and sickly), a fan or music, lots of stalls, and lots of sinks.

And let me tell you, bathroom time is SACRED.  Having someone knock on the door or talk to you while you are in the bathroom is violating the sacredness of the restroom.  Whatever I’m doing in there, if I’m using the toilet or just sitting on the floor being alone; it’s my time and it cannot should not ever ever ever be interrupted.

One more thing about bathrooms: Chronics do not like the social norm of going in groups.  We like to be alone.  Because it’s awkward and embarrassing if we end up taking longer and we know our friend is standing out there waiting.  Or if we’re retreating to the bathroom to be alone, we obviously don’t want someone tagging along, because then we wouldn’t be alone.

5. People playing down your illness.

chronic illness cat miracle cure

It really gets on my nerves when people downplay my illness.  And there’s a couple ways that happens.  Well-meaning people will compare my chronic illness to having a flu for a few days.  I realize it’s an attempt at empathy, but it fails to accomplish that.  Having a flu for a few days is nothing in comparison to having a ‘flu’ for six years.  Not to mention that a flu generally has two to three symptoms.  I’ve dealt with a lot more symptoms at a much more severe scale.  And I’ve known other people with this illness who have even worse symptoms than I do; like seriously, Lymies go to the hospital a LOT.

When well-meaning people give me ‘miracle cure’ advice.  There is no miracle cure for an illness as complicated as Lyme disease.  And by assuming I would have missed something so simple, you’re claiming to know a lot more about my disease than I do.  It’s basically calling me dumb and my doctor(s) dumb.

Lyme disease is a complicated illness.  It has both physical and psychological symptoms.  It attacks every system of the body. It can get in the nervous system and cause severe pain and seizures.  It can make you forget how to swallow, how to walk; it can steal your vision and hearing.  It can interrupt your thoughts with graphic, scary images (a symptom called ‘intrusive thoughts’).  It can disrupt your emotional well-being, causing you to be depressed over nothing or to blow your top over nothing.  That’s called “lyme rage”, and it’s a pretty scary thing.  Lymies have smashed car windows for getting cut off, thrown their dishes across a restaurant because the food was cold.  It’s something that cannot be controlled.  It can cause depersonalization, causing you to lose touch with reality, wandering around as if you’re in a daze.  Lyme disease is not a simple illness.  A lot of Lymies commit suicide to escape the pain, social stigma, and mental agony.  A miracle cure is not going to fix that.

And Lyme disease is not the only complicated illness.  Most chronic illnesses involve a lot more inconvenience than just popping a couple pills a day.  It involves managing a diet, exercise, Doctor’s appointments, medical bills, symptoms.  It’s not just a word typed in your medical file; a chronic illness can seriously affect your life in ways that are just not simple. 

6. Small Talk

awkward small talk

The first question people generally ask in small talk is the classic, “How are you?”  This particular question poses a dilemma for chronics. Do we answer honestly?  “Oh I’m fine.  I just spent the entire day trying not to throw up and I’ve had a migraine for three days. . . How about you?”  But to answer with a simple “I’m fine” feels like a lie.  And some of us have a real hard time with dishonesty.

But if we answer honestly it puts a depressing tone on the conversation.  Like when I talk about my chronic joint pain, the pity look flashes across their faces.  Even if I’m being positive about it and am relatively happy, hearing that I’m in pain makes other people uncomfortable.

And then there’s just small talk in general.  It involves going back and forth about their jobs, their hobbies, their love life, their vacations.  But a lot of people with a chronic illness, (I’m referring to Lymies here) have a substandard quality of life.  We don’t feel like going out, or we can’t.  Our hobbies involve filling our pill boxes and watching re-runs of Monk.  Our job is to survive.  So when people ask, “what have you been up to lately?”  There’s an awkward pause as we try to come up with something other than lying on the couch all day.  Typically I just let the other person talk, because people like talking about themselves and it takes the pressure off of me to come up with something interesting.

7. Holidays

sad holiday

Holidays involve a lot of small talk.  They are also loud, and busy, and most of them are during the cold time of year.  Long-distance family members come by and they want to know everything about you.  “How’s the Lyme stuff going on?”  Because Christmas is definitely the day I want to focus on and talk about my illness and how things aren’t going well.

And if the family stays with you, it can be difficult to retreat into a quiet place because there are no quiet places.  And the food.  Most chronics are on some kind of special diet; and holidays don’t allow for special diets.  Have you ever tried being gluten-free at the Thanksgiving table?  It’s rough.  You can’t eat the mashed potatoes because they put a bunch of dairy products in it, you can’t eat the bread for obvious reasons, you can’t have the gravy because they made it with white flour even though you asked for it to be made with corn starch.  You can eat turkey.  And canned green beans, if they thought to bring that along with their glutinous green bean casserole.  If the holiday is in your own home, you have more control over your meal; but if someone else is hosting you have no way of knowing if the food is something you can eat.  You can call ahead and explain your needs, but their kitchen isn’t gluten free and you don’t want to be a bother.  After the meal is worse, because you sit around watching everyone eat these delicious, fatty, sugary, deserts that you can’t have.  But your Aunt Jody won’t stop insisting you try her cranberry cobbler, and you keep refusing, and pretty soon you’re known as the snob of the family.

And then there’s the infamous New Year.  Nothing like a new year to remind you that another year has gone by and you still haven’t recovered.

8. Pharmacies

allergic to pharmacists

I don’t know what it is about pharmacies, but I’m pretty sure all the ones I’ve been to have never heard of HIPAA.  When it’s crowded and you’re trying to have a confidential consult with the pharmacist, he won’t lower his voice down.

I was on birth control a while back to manage my hormones.  And I had a new prescription added, so I needed a consult.  So after the pharmacist talks about the new pills, I started to walk away, when he suddenly calls out, “Oh!  And those such-and-such pills will limit the effectiveness of your birth control, so you’ll need to use a secondary protection.” Yeah.  It was that bad.  I stuttered out, “I’m not taking it for that. . . ”  And then I turned and ran away.  Look, I know I’m a college student, but don’t assume I’m a stereotype!  :(

Another time, at a different pharmacy, I was picking up three or four different antibiotics at the same time.  The pharmacist actually wouldn’t give me my pills.  She just held on to them and kept picking them up and putting them down and saying, “Such an interesting blend of pills!”  I could see what she was getting at, so I cut to the chase.  “I have Lyme Disease.”  “Oh, really?!”  She got all excited.  I guess having a Lyme disease patient wasn’t something that happened every day.  Then she starts asking me about my symptoms, and how long I’ve had it.  And then she reassured me that these pills would make me feel better and finally gave me my pills.  There were other people waiting in line, and they could hear the interchange.  Now she’s managed to have my condition known to at least six other people I do not know.  Every time I went back to that pharmacy, she has to ask, “And how are you feeling?  Are you feeling better?”  And she seems really confused that I’m still on these prescriptions after a year.  It’s awkward, it makes me feel uncomfortable, and I wish I actually had the privacy that I’m supposed to have through the Health Information Protection Act.

9. Discreetly taking pills

Taking pills

“Excuse me for a minute. . .” 

“What in the WORLD are you DOING?” 

“It’s normal and I’m not a druggie, okay?. . .” 

It’s all fine and dandy when you’re at home all day, but when you’re going out–it’s a whole different story.  When and where is it okay to whip out a handful of pills and chug them down?  In the middle of class?  In the middle of church?  On a first date?  Pills jingle in purses and clack together when you shake them out. Pill carriers can have snappy lids that will echo in a quiet room.  Then you still have the trouble of getting them in your mouth without people noticing the number of pills you’re taking.  Injections and  inhalers are even harder to use without drawing attention.

When I first starting dating my boyfriend, I would plan to eat twice.  Once with him and then once at home so I wouldn’t have to take my mealtime pills in front of him.  Now that we’ve been dating for almost a year, I have no problem bringing my pills with me.  I can take them right in front of him.  He is very supportive and cheers me one with each pill, making pill time fun! :)

10. Saying “No.”

no

Chronics say ‘no’ all the time.  NO, I will not go to the event.  NO, I can’t hang out.  NO, I will not eat that food.  NO, NO, NO.  And every time we say it, it hurts.  Because I do want to go, I do want to hang out, and I do want to eat that sugary fatty chocolatey awesome-smelling desert you spent three hours making.  But I can’t.  I have to say ‘no’.  I need to put my health and well-being first.

So there you have it.  Hopefully you understand the life of a chronic a little better.  So go out there and make a gluten-dairy-soy-sugar-free dish and give a chronic a hug!

~LymeDiseaseWarrior

Questions?  Something to add to the list?  You can comment below or contact me at: lymelightfight@gmail.com

 

 

 

Good News and Bad News

So I’ve come back from Thailand.  I fulfilled my childhood dream and crossed off a major event from my Bucket List.  The trip was amazing, of course.  :)  The Thai people are very friendly and happy.  The landscape is stunning!  We started out in the middle of Thailand, then went up to the North–right along the border, before we went down to the south (right along the beach) and back up to the middle.

As for my health, I held up pretty well.  I had brought my pills with me, but missed a few doses here and there.  We were running around, after all.  The flights were tough on my joints; the air pressure changes proved to be very painful.  But not too unbearable.  I’m glad the trip ended when it did though.  Two weeks was definitely my physical limit.

Unfortunately, since I’ve been home, my joint pain has returned and steadily increased.  It’s a constant ache in every little joint from my head to the tip of my toes. and every inch in between.  It’s not Lyme arthritis, as I have no swelling or redness.  It’s just a constant ache; sometimes dull, sometimes sharp; but always there.  The pain doesn’t affect my mobility much.  I can walk just fine and type.  It is getting more and more difficult to drive though.  I drive one-handed, switching back and forth between my arms as one becomes too painful to use.  It’s becoming not uncommon for me to tear up as I drive from place to place.  But I’m still capable; my brain is working, so I don’t get confused or forget how to drive.  It just hurts.

I thought that the pain might be a result of the weather change.  In the past, cold weather has always worsened my joint pain, so I figured that going from hot Thailand to a chilly California was the culprit.  And with the weather having grown colder while I was gone, it seemed likely.

But when I saw my Lyme doctor yesterday, she said that it’s not the weather.  :(  She made the comment that I had ‘retracted’ in my progress.  There’s only a couple places where Lyme can drill down and hide in the body.  The brain–and I’m not having those symptoms–and the joints.  In the lining of the joints there’s not much blood flow, so therefore there’s not many white blood cells present there.  An excellent hiding place.  And that’s what the doc is pretty sure has happened to me.  The stress of travel and my missed doses coupled together opened the door for the Lyme to hide in my joints and cause trouble.

Unfortunately, the only way to get the nasty bugs out of there is by IV antibiotics; which is exactly the thing I was hoping to avoid.  In this whole process of Lyme, I have endured much.  But I was always able to say, “At least I don’t need a PIC line.”  Well, now that might not be the case.

We’re still not confirmed on whether I need a PIC line or not.  My doc ran a bunch of tests to make sure it’s not something else I’m dealing with.  But she didn’t sound too hopeful.  :/

For those of you who are not Lymies, getting IV antibiotics is a big deal.  On the one hand, there’s the financial cost.  Oral antibiotics can be costly, but IV antibiotics are just down-right expensive.  Not to mention more of a hassle, as you either have to go sit in the doc’s office while they administer it to you, or you get a PIC line put in and administer it to yourself.  The PIC line is basically a tube sticking into your arm, 24/7.  Can you imagine walking around with that?  At least the weather is colder now, so I guess I’d have to have long sleeves.  But still.  I work with kids at one job and customers at my other job; a PIC line in my arm just does not sound good for either job.  :(

Not to mention the emotional strain.  I AM SCARED OF NEEDLES.  Every month for almost two years, I’ve had my blood drawn for tests.  That’s over 24 times I’ve had a needle stuck in my arm, and I STILL have to squeeze my eyes shut and turn my head away.  Call me a whimp, but I just don’t see how I can keep my eyes away from my arm for that long.

AND when you have to get IV antibiotics, you know that’s when your case has moved from being the ‘easy one’ to being one of the complicated ones.  :(  My doctor and her staff have been calling me the ‘easy one’ since my first appointment there.  That’s because I do what they say, and I just keep getting better.  Until now, when I’m going backwards instead of forwards.  Nobody is calling me easy anymore.  :(  And the doctor wants me to see the Nurse Practitioner on my next visit, so she can have ‘fresh eyes’ on my case.  You don’t call in a consult on an uncomplicated case.  I don’t like being a complicated case.

But, I don’t want to sound like a baby.  I know my case is far from being complicated compared to those of others.   I know lots of Lymies out there who have had PIC lines and they dealt with it, probably with a lot less complaining and whining.  I can probably find a way to make it work with my jobs; if not, well. . . I’ll cross that bridge when I come to it.  I can probably afford it, with my parent’s help; I’ll just have to put off paying my student loans.  : P  SO I don’t have to worry about the finances–yet.  And there are some positives; one is that the IV antibiotics would probably get me better faster than my oral ones could.  And it might actually be nice to have a physical sign of my illness for once; I am curious to know what it would be like to have an illness that’s not so invisible.

AND MOST OF ALL: I might not need it.  My joints might improve and we’ll see that the IV is unnecessary.

. . .

(but it’s hard to focus on the positive)
 

~LymeDiseaseWarrior

Eat Clean, Live Happy

By Caterina Roman

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