Just Because You Said It….

Doesn’t make it so! Over the past few months, this is what I wanted to say several times to a doctor I decided to “try” out.

After testing CDC positive for Lyme disease again in February, even with 3 years of treatment under my belt, I won’t lie. I was feeling really lost as far as how to progress with a treatment plan. My LLMD put me on a Z pack for 5 days and that was it. I am sure he did not want to throw me back onto antibiotics if at all possible. But still. I was really not feeling confident in what path we would take at this point in the game.

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A friend of mine had recently visited a local rheumatologist. I reviewed the doctor’s website, and it actually advertises that she treats for Lyme disease. Oh, the awesome feeling I had! Most doctors know nothing about Lyme and about nil advertise Lyme on their website. Yes, to say the least, I got my hopes up. The further to fall, some would say.

And lo and behold, she knew nothing about Lyme. She prescribed me Lyrica for my fibromylgia pain on my first visit to her, without any labwork, without checking other diagnostic criteria I expected. She ordered about 15 vials of blood taken to test for other auto-immune diseases. When I told her I had been treating Lyme, she actually asked me if I had been bitten by a tick. Seriously!?! In almost the same breath, she told me that there should have been no reason for my being put on antibiotics for so long. I felt the pit in my stomach growing. I told her about  the severe fatigue I was experiencing. I brought her the bloodwork showing my CDC positive results.

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Honestly, I don’t think she even looked at the lab report. I did a follow-up visit but it was more of the same. Although I was glad to know that I did not test positive for any other issues, she did not help me at all. I am not taking the Lyrica; I have decided, thanks to my 2 other doctors who do know about Lyme disease, to pursue a more natural approach to treatment.

I guess I knew that it was too good to be true that this doctor I tried out really would know Lyme. While this was disappointment, it wasn’t necessarily unexpected. However, what was somewhat unsettling is how quickly she was willing to put me on medication. Not antibiotics mind you, but the Lyrica. For  my severe fatigue, she told me to drink more caffeine. I suggested this would not be good for my adrenals and she stated that my adrenals are probably shot anyway so it wouldn’t make a difference. I was shocked. This was the last straw.

Lesson learned? This whole incident did emphasize that my 2 LLMDs know what they are doing, at least for me personally.

I hope you had a great weekend. I’m back at it; fighting the good fight. Peace – B

WTH?

Sorry for the radio silence. I’ve had about 3 weeks of severe fatigue. When I haven’t been working (or haven’t been able to work), I’ve been mostly in bed or at doctor appointments. Yesterday and today were the best days I’ve experienced in more than a month. So this is short and sweet. I promise to do a real post very soon. Thanks for sticking around. I’m hoping all is well in your world.

Be good.  – B

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My Bed is my Bestie

Totally sad, but true. Since Saturday, not much has changed. My bed is my Bestie. I don’t even know how many hours I’ve spent in bed feeling not so bueno. Yesterday was more of sleeping, a few loads of laundry, reading, resting. I did manage to get out of the house, only because I had to, and so I drove around a bit near here and took some pictures. It was the Big Event this weekend, at least for moi.

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Winter sky of blue

This time of year it the most beautiful to me. I think it has to do with the crystal blue expansive skies, the golden colors mixed with grey and brown. It’s cold. But not the tepid cold. More of a biting cold. The kind of cold that makes your eyes sting. No wind though. Just pure perfection. The beaches are also my favorite this time of year. The ocean stirs no matter what is happening on shore. And empty, the beaches are empty of people which is total bliss. Only the birds and the sea creatures are scurrying around. Hearing the waves lap, the seagulls squabble, feeling the rigid breeze is all inspiring.

 

But I didn’t go to the beach. The nearest one is about an hour plus away not even considering traffic, and hey, I can barely make it to the front door. No can do. This morning was just more of the same. Headache, stomachache, body pain. My alarm screamed at 5 a.m. and so did all of my body. This Monday was so not happening.

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January 2016

 

It’s disappointing to feel terrible enough that I have to take a sick day. I know that is what they are for, but in the past, I would take a sick day and then feel better. Now, I take a sick day and just pray I can handle the rest of the week, whether that is 4 more days or just one. It’s frustrating. What did I do today? I ran the dishwasher, did a load of laundry, and walked out to get the mail. Otherwise, I spent the rest of the day in bed with my BFF. We snoozed, watched some t.v. and did a smidge of reading. Sounds delightful to many I’m sure. But all the while, the Lyme played in the background, the pounding headache, the sore joints, the brain fog, and the stomach issues. Constantly moving to escape the pain if on one side too long, I have 2 heating pads going. I thought about adding a 3rd but that is a little excessive and truly ridiculous. And the not knowing if the next hour or day will be better? That is the most frustrating. This unpredictability of this disease is why I am trying to do my best to just relax and enjoy the times when I do feel decent. There is no “storing” up feeling good nor energy. Both things come and go, flitting in and out like a hummingbirds. So quickly, I can be at about 80% then, bam, 20%. So it goes.

Hopefully, though, now that I rested today and I was good about not being too pissed at myself, I can go to work tomorrow and be productive. Sorry BFF, you’ll have to handle the rest of the week alone.

Until next time, my people, peace and joy to you and yours – B

 

 

Accomplishment for Today?

Make that a zero for accomplishments today!

Pretty much nothing. I have been lazy all day long. Or honestly, resting. I did get two loads of laundry done, and I paid some bills online. Other than that though, I spent most of the day in bed with the heating pad and the puppies.

This was our first week back at work after Winter Break. While it went well and I have no complaints, I am wiped out. And I try not to worry about the next close to 18 weeks this semester; it is difficult not to. It isn’t productive at all, and I know this, so moving on.

ChristmasOwl
image from http://www.myowlbarn.com

Also, I have been without the BB drops I have been taking the past 7 weeks for about a weekish. This was mostly due to my own inability to plan ahead. I just started back on them last night. I’m trying not to lose ground, so I am back on at 12 drops twice daily. We’ll see how that goes!

The weather here which has been damp and cold, is causing me stiffness and lower back pain for most of the week and even more today. At least I will blame it on the weather. But who knows if it is the weather or a Lyme flare or both? Ah, the mysteries of Life!

Oh, wait, I did go outside, and believe me it was mega windy and cold. No snow here though, and so that makes it much less of a big deal for sure. Deciding to move the 2 bags of birdseed, 35 pounds each, into the storage shed was a large task for me. But the bags have been either in my car trunk or outside the gate to the front yard for a solid 2 weeks. Moved them inside the gate, into the wagon, filled all of the feeders, like 5, and then moved the bags into my mom’s little storage shed (she lives next dorr and we share about an acre and a half). There you have it. The big action for today! At least all of the birds were impressed and happy.

It may freeze tonight but it is kind of cloudy out. If it clears off, we’ll get a freeze tomorrow night for sure. Wish me luck that I get more done tomorrow. At the very least, I will have to run into the small town near us and get a coffee maker. Mine took a dive today and well, there is absolutely nothing worse than not having that Juice of Life cup of coffee when I rise. It ain’t pretty people. I hope you all had a waaaay more productive and less painful day than I.

Until we meet again – B

 

 

A Reality Check

It’s December 12th, heading swiftly towards that blinged-out-commercialized-day of Christmas. I’ve put up a few decorations, the tree, some lights outdoors. The weather has been in the highs of 78-80 this week, but it is now pouring down rain and windy as all get out outside. We finally not only saw the snow geese (Canadian geese); we saw a few flocks of them as well. Supposedly, the weather is turning chilly in the next few days as a cold front creeps its way down here. I’ll believe it when I feels it.

Since my new doctor appointment early in November and since starting on the herbal tinctures as my new treatment, dropping the antibiotics, I actually have felt half-way decent. The fatigue has decreased, the migraines are few and far between, and the nausea is way less. It honestly has been a nice breather from the new normal of suckthelymeville. Thanksgiving break was pretty awesome. I was able to do a few things that I haven’t done in so, so long. It was a real treat!

But I knew these next few weeks would be the real challenge at work. The weeks between Thanksgiving and Winter break. While yes, technically, this is only a span of three weeks, believe me, it feels like six. It’s the end of the semester. Things are coming at teachers from every which way. It is always a tough time of year, but as usual, for me it is breaking me down. I know it did last year as well. I’m not trying to be whiny about it at all. It is what it is. I try to keep in mind that even for normal, healthy people, this time of year is extremely stressful no matter what profession and this helps a bit. But I will say this, by yesterday, I was all played out. All day long, my brain was empty and sore. I couldn’t focus on anything at all for more that a nano second. You laugh, but this is the truth. I tried to be productive. Now, I am laughing!

Today, I feel like a bus hit me. The soreness, the aches, the headache, the beloved (not!) nausea. I haven’t slept well in the past few nights and last night was no exception. Tossing and turning. Laying too long in one position produces pain, this wakes me, I turn over, kind of awake, then the process begins over. The unrestful sleep is killer and is just exacerbating all of the other awesome Lyme stuff. My head is hurting. Not a migraine, but just enough to make my stomach nauseous. I hate this combo of symptoms in particular. It feels like having the flu which is just downright miserable in and of itself. Only with Lyme, you don’t know when it might let up or go away. So, Reality Check.

 

Guess what, sucker? You still have Lyme disease!

I LOVE to fantasize. About activities, about going places, about projects at home, about eating yummy food without experiencing indigestion. It keeps my mind busy and delighted, it can sometimes distract me from the ugly gloogy gooks rumbling around in my body. And then. Sometimes, I go a bit overboard going so far as to actual Make Plans to do a said fantasized scenario. This rarely works out well. This holiday season, we have two events we have said “yes” to: an open house event and a dinner event. And even committing to these two things were difficult. While I definitely want to go and have fun with people, especially this time of year, I worry so much about getting to that day / evening, feeling terrible and then canceling. Not only is it disappointing for my people, and for my husband, but it is so freaking disappointing for me. The fantasy comes crumbling down, and I’m left with the slap in the face. That realization that I’m still limited. This is Reality.

How is everyone doing out there? Drop a comment or two so I know I’m not alone. Hoping it’s a pain-free day for all! -B

 

 

 

Proceed with Caution!

Life is a Roller coaster right now…..

Yeah, so this is me right now. Up and down, up and down. Normally, I’m a very steady personality. I do not anger easily. I’m good under pressure and stress doesn’t phase me for the most part. Now, enter Lyme. Neuro-Lyme, specifically. Can someone just say, Stop the Madness?!?

rollercoaster1  And we’re off! When I was first diagnosed with Lyme disease almost 3 years ago, my major cognitive symptoms were short term memory loss, word recall, concentration  (I had NONE), and trouble reading.  All of those have improved over the course of treatment. If I am experiencing intense fatigue or stress, they all will rear their ugly heads. Monsters from the deep, I like to call them!

But probably for the past six to nine months, and uhm, this would be way more if you were to ask my hubby, I have experienced these weird mood swings. I guess they can be comparably to PMS mood swings and yet. Along with the mood swings, sometimes, anxiety comes out to play as well. I honestly can say I have never had anxiety except for maybe right before a huge exam or before speaking in front of a crowd. And I never called these feelings “anxiety.” I just called them stress. When I say mood swings, I mean like minute to minute mood swings. Yes, sometimes the mood swings can take a few hours but then sometimes, not so much. From the outside looking in, these swings really can be “crazy.”  Anyone else have this or had these in the past?

Example. We go to lunch. Everything is ok. We have a nice lunch, and we have cordial conversation. LOL. Then, afterwards, hubs wants to change the oil in my car so we have to go to another small town about 20 minutes away to get the oil. Yes, the joy of living in the country. Hubs asks me with all seriousness, “Are you going to be alright if we make this detour on the way home?” He means can I handle it energy-wise and mood-wise. Well, of course I can!

I’m good. We shop. I look at decorations. I look at shiny stuff. Then, I start getting tired. It hasn’t been a long time from when I first made the decision to go along with the oil shopping trip either. Really, in non-Lyme time,  it has only been about 20 minutes. I’m getting overloaded with stimulus and decision making – I’m trying to find some decorative tins for baked goods. There are a lot of people, a lot of talking, a lot of music. My head starts to feel foggy. By the time we check out, I’m done (and this is less than an hour trip mind you). Some strange time warp happens, and I start acting like a 2 year old who needs her nap. My husband is confused by my behavior, as am I. On the way home – a whole 15 minutes – he’s like, “Hey, I thought you said you would be alright?” Sure thing. Me too! I made a point that I never used to be this way, mood changing faster than the weather, and he agreed.

Overall, yes, the neuro-symptoms are improving but I’m still having these mood swings. Happy one minute, bummed the next. Upbeat and positive, then solemn grumpy pants. Pepper in some anxiety, and presto! Inner Gremlin appears!

So, how many of you suffer mood swings and/or other neuro-Lyme symptoms? And how do you manage these?

Until we meet again……Peace, B

P.S. This site has some solid information regarding neurological symptoms and Lyme.  www.neuro-lyme.com

 

 

 

My Life is Fleeting One

Trying to get through this….

Hello people, it’s been a long while. And as we all say, so much has happened and yet nothing at all has happened. First, maybe, is that indeed, I have made it to Thanksgiving break at work. This is a huge hurdle for me, and I am very grateful to have cleared it, circa 2015, with all limbs intact. There were about 3 weeks there in late September that I honestly thought I would not be able to make it, and I would have to take a medical leave; I was really worried that I was getting worse. Then, things turned around, albeit slowly. I’ve finally come to terms with the fact that living with a chronic disease, things can change on a dime and they do. Although I am not a fan of this at all, accepting this as a reality has been somewhat helpful along my journey into the unknown.

Seeing another doctor has also happened. We made a 3-4 hour trip from home to the new doctor’s office a few weeks ago. The visit was a long one in which I talked too much, my husband reported to me afterwards, and we left with a few bottles of tinctures. Personally, I like this doctor, the approach to treating Lyme through more integrated and functional medicine, the way the doctor listened and validated mine and my husband’s experiences over the past 2 and a half years of treatment. I have stopped the abx and switched over to the herbal drops. The goal is to get to 25 drops 2 times daily. Right now, I’m struggling with 5 drops 2 times a day. I can do 4 and make it alright. But the past couple of days when I tried to get to the level 5, by about 4 p.m. I am herxing big time. I also have detox drops for the herxing, and I have added those as needed, but wow, there is s distinct difference, at least for my body, between the 4 – 5 drops. We are working on it. 🙂

I hope everyone has a wonderful Thanksgiving! This break I’ve been able to do a few things I normally can’t / don’t do while working such as, and don’t laugh: grocery shopping, house cleaning, pie baking, dinner out, laundry – lots! While most of these things are not huge in any way, I have just not had the energy to do them much while working. And I actually did some simple Christmas decorating! It really has been pretty awesome getting to do these things without feeling so fatigued and overwhelmed. While several of these afternoons and evenings I have been in bed with nausea and headaches, I still feel like I’ve had some of the best days I’ve had in a very long time. I know I have pushed myself a little much, and I’ve eaten several slices of pie, pumpkin and apple, so my sugar intake is in the red, but it’s all been worth it! I feel like I have been partying it up, people!

Best wishes to you and to yours, -B

First Aid Kit

P.S. The above band is worth checking out. This song, “Fleeting One” is stuck in my head. Enjoy!

Talk About Zombies

The fatigue is back, and it is taking absolutely no prisoners. If you recall, my LLMD had me take a break from the antibiotics for about 7-8 weeks, recently. I’m really not sure why except that I could use one after 27 months on abx. For the first 3-4 weeks, all was good. Headaches let up, nausea was less. I was hopeful. Then at the beginning of September, I caught a cold. Pretty much all hell broke lose.

I had the cold a solid week. Then I still had sinus, coughing, lingering everything. And the Zombie fatigue came on, full throttle. Ah, the misery! And the achy joints and just body aches. I was convinced also that the EBV was activated again with the fatigue being so terrible. It took everything I had to get to work, and then back to bed every day. I spent the weekends in bed. When I get into my doctor at the end of the month, she said upper respiratory infection caught me. Let’s check for the EBV. I assumed, and I had a list – that we would also check Lyme, Mycoplasma, HHV-6, thyroid, etc. since I told her I was having such severe fatigue. But,nope. EBV came back quiet, and she had actually tested for nothing else. And my follow-up? Yeah, in December. December?!?! Frustrated, I emailed my doctor about my concerns, and now I am going back in a couple of weeks. I’m not sure what will be different this time around, but it’s worth a shot. My doctor did not have a suggestion for the fatigue other than she still thinks it is caused by Lyme. Honestly, I don’t know. When I was at my sickest, right before being diagnosed, I did have this kind of fatigue so it is very plausible. I just worry that now that I have been dealing with the Lyme for so long, is something else rearing its ugly head?

In about 3 weeks, I am actually also going to see a new LLMD. I have been scouting about for someone else to add to the “team.” I love my doc, but I feel like we never have enough time to address all the issues I am having. Lyme is so complex once it is in the chronic stage, and she really just doesn’t have time for the treatment I need right now. I am hoping this new doctor works out; I will still see my LLMD here as well. The new doctor is about 5 hours away so it’s not like I can jump in a car and go see her anytime I want to. I have heard she likes to try to treat Lyme as a whole rather than in pieces. FIngers and toes are crossed that she can help me out.

But this fatigue needs to go! I’m taking iron and vitamin B hoping that helps some. We were supposed to go out of town this long weekend, but I actually got really sick Friday afternoon, and we couldn’t, or rather I, couldn’t manage the trip. It was disappointing. My husband and I were looking forward to going to the beach and getting out of the house. Instead, I was in bed Friday afternoon through yesterday mid-morning. I think I may have actually had the flu on top of the Lyme issues. I’m feeling a little more like myself today.

I’ve never experienced fatigue like the Lyme fatigue that comes on. When I used to say, “I’m tired” I meant that I had worn myself out doing most likely something physical. But once rested, I was back to it, taking my energy for granted. Now, I never feel rested. I sleep, I rest, I don’t do much, and I still feel so exhausted; it is a chore to think about getting up to brush my teeth. The fatigue just adds to the memory issues and the brain fog. Sometimes, I just want to lie in bed, in the dark, with no sensory anything because sometimes this is the only way I can think straight. Does anyone else need to do this? Just go somewhere quiet and lay down?

I know it is overused, but this fatigue really does make me feel like a zombie. I seem to move in and out of each day half-awake, in a weird trance. It’s hard to explain. Outside of work is difficult enough but I can lay down whenever I want. Work is a whole other challenge. I just try not to think about getting through the week ahead but instead focus on getting through the day. This strategy helps I think. And no matter how much I rest each day, by the next day, the fatigue is compounded. But I want to work. I want to do things. I don’t want to be a Zombie. None of use do!

Happy fall, peeps – B

Fall in the mountains

Two Steps Back…

Hey all you people! I haven’t been in touch lately. School started back, and it has been a whirlwind ever since. Mostly, I come home and lay in bed to rest. I rest on the weekends so I can work through the week. Or at least try to. I’ve been off of antibiotics for almost 7 weeks now. At first, there  wasn’t a considerably difference. After a few weeks, the headaches became less and the nausea was a lot less. Otherwise, things were not better or worse. But then, the first week in September, I caught a cold. My husband was in bed for three days over Labor Day weekend; I stayed as far away from him as possible! But so many people were sick at school, it was impossible to stay away from the germs.

So it got me. I held on, and I really thought I was winning the battle. But since then, things have gone south. My energy level is nil. I have a recurring sore throat on the right side and I have issues going on with my sinus. I’ll spare you the gory details but suffice to say, my sinuses are full. I can breathe through my nose most of the time, but there is stuff way up in there that comes out in the morning and evening through coughing. The body aches and the back pain are back. No appetite really. I’m guessing that the EBV is active again and maybe the Mycoplasma pneumonia load is high again. Depressing? A, just a little.

Walking forward.
Walking forward.

Heading to my LLMD tomorrow. While I look forward to going, I know I will walk away disappointed. Labwork takes a week, and then it is a VM recording from the doctor about the lab numbers and what is next for treatment. Nothing seems to change much. No matter what, I am guessing my doctor will end up putting me back on some antibiotics, and we move sideways? It hasn’t been a move forward in ahile by my account. While the summer was nice because I could rest as needed, I feel as though I haven’t made much progress in terms of my health since I had the Picc line last summer, 2014.

So, now what? I drag myself through every day, hoping the next day will be better. I’m finding less and less to enjoy as I am too fatigued. I have an appointment with a different doctor in November; I’m hoping to try and find some other ways to treat this along with antibiotics. I do have tons of supplements and I am trying to take some antivirals, but it got to where I was taking like 30-40 pills a day and that got old real quick. My diet needs to change. I know this. And I need to make it happen. I just get so tired!

We’ll see how tomorrow goes. At least I can tell my doctor what is going on and that in itself can be a relief. I promise to update soon.

Peace – B

Back to Bed

Well, all in all, this Thanksgiving break, I have had a decent run of it. But Thursday and today, I am paying for it. It’s 12:30 p.m. on a Saturday; my husband and in-laws are outside working on our new shop and here I lay in bed. We did go to our friends’ house last night for dinner. It was lovely, and I had not seen them since Labor Day weekend! When I am at work that is about all I can manage to do so socializing it not something  can partake of much these days. The evening was nice and I kinda felt normal, and not the “new normal”, the old normal.  🙂

In an offensive move, I played everything safe, too! I took my meds as scheduled, I drank just one glass and a smidge of champagne, I ate more salad than anything else, and I shared a piece of cheesecake with my husband. I know that alcohol and sugar are not great for me but, I promise, the rest of the time, I do a pretty good job of not using either. We were home by 10:30 also!  But then, I could not go to sleep.UGH.

I took my doxepin as soon as we arrived at home. I knew it would take a bit to kick in, then I took lunesta. But for the life of me….I think I finally managed to fall out about 1 a.m. I guess this is part of the reason I feel so horrible today? Damn! Waking up about 6 a.m. to give my Chihuahua Chino his anti-seizure meds, I could barely get out of bed. The bodyaches were everywhere; I basically limped to the kitchen. No worries thought I, I will take a pain med and all will be better. Chino got his meds, and I took mine and headed back to bed. I was finally able to get warm and cozy and doze off for a few more hours. At 9, when I did get up for good today, I was in as much pain all over as I was at 6 a.m. Plus, the headache started its familiar knocking. Moving around as much as possible and having my daily cup of joe, I still could not shake the body pain. It’s one of THOSE days, friends. Uncool.

Struggling and stubbornly, I did some household chores and then headed back to my sanctuary, my sweet bed. But, I am still hurting, and I feel frustrated. Chino and our other Chihuahua, Boo Boo, are on the bed with me sacked out, and I am writing this blog.

Where I am today!
Where I am today!

Can anyone suggest anything to help alleviate the bodyaches and pain? Anything? I have tried an Epsom salt bath, and I have taken a pain med. Both have helped a bit, but I a still having difficulty moving around which is a bit scary, honestly. What are some things you do to at least push back these symptoms and/or take the edge off? Thanks in advance.

Peace, B