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

On the Antibiotic Wagon

I hope everyone is staying cool. Temperatures here have been raging at around 105 degrees and that is the REAL temperature, not the heat index which is even higher. For the love of God, it is hot. Between noon and about 7 p.m., it is way too hot for me to go outside. The heat just completely zaps me.

I had my doctor visit a few weeks ago. Things seem to be pretty status quo in that my numbers are all hovering basically at the same place as in June. Here’s where I stand right now: CD57 – 33, Lyme bands 23 and 41 showing IGG and band 41 IGM, EBV is reactivated; it had been inactive since April, Mycoplasma finally under control, and HHV6 active again. In all honesty, this is for the most part where I was at the beginning of last summer. What I expected was my doc would put me on another course of antibiotics since I have been on amoxicillin for about 5 months now. Instead, on the patient lab VM, she said we were going to take a break from the antibiotics.

http://netdna.tinyhouseblog.com/wp-content/uploads/2014/03/medicineshow.jpg

It freaked me out. I listened to the VM about 3 times. My brain is like, Are you Sure?!? But there are no certainties with Lyme now, are there. I was so sick when I was finally diagnosed and I have not had more than a day or two break from being on antibiotics in 27 months. In in those 27 months, I have made some significant strides. So, yes, it is freaking me out a bit! I know I need a break, my body needs a break, but I feel like I have lost my walking stick. It’s only been 3 days without meds, and I keep analyzing myself, waiting for new symptoms or for the flu-like monster to rear its ugly head. It’s hard not to worry.

Also, right now is about the most stressful time for me at my job, besides at the end of the school year. In a mere 10 days, school is up and running and so am I. I’m struggling between being happy to return to the classroom after a nice summer break and the dread of becoming severely ill. While I know it is not a good thing to worry and stress, it’s there in the back of my mind, the What If? Meditation, and I use that term very lightly as I am just dipping my toe into that arena, is helping some. The breathing combined with focusing has helped me clear my mind some. Like one of the mantras in AA, I’m taking it One Day at a Time. Or one hour at a time. It’s just a challenge for sure.

Anyway, I’m on the wagon, and we’ll see how it goes. My next doctor visit is early October. By then, the weather will still be hot, but the evenings and mornings will be cool, school will be in full swing and hopefully, my immune system will have stepped up and kicked some butt.

For those of you not on antibiotics, or taking a break from them, any suggestions on how I can support my immune system right now? I appreciate any and all recommendations.

Till next time, friends, -B

Fire in the Hole

Fourth
Fourth

Well, I certainly haven’t been diligent with posting. Just a quick update, I’m still having issues with my lower back. Insurance has denied a lumbar MRI. Doctor exploring possible colon issue, possible pinched nerve, and a few other things. The pain is bearable, and I just don’t have the gumption to fight the insurance on it. My kidneys are good and they were my main concern. However, I have had all kinds of other check-ups and doctor visits just to make sure the rest of me isn’t falling apart: eye doc, dentist, general doctor. All of those visits have turned out just right. None of this is an excuse for not posting!

Hopefully, all of you enjoyed the 4th of July weekend. We had plans both Saturday and Sunday, but Lyme played its card, and it was a doozey. One positive is that since I have been having better days, I can really feel the herx when it comes on. I started feeling under the weather on Saturday. I honestly just chalked it up to a busy week; I actually was doing things a “normal” person might do! Running errands, grocery shopping, doctor visits. It was all kind of amazing. I haven’t been up for much of any of that in a really long time. Last summer I had a PICC line so I was somewhat limited in my scope. I also didn’t feel really great most of the 5 weeks I was dosing. Anyway, by Saturday afternoon I was in bed with a headache. My husband had to go to our friends’ party by himself but he was very understanding and that helped me not feel so cruddy.

By Sunday though, all was lost. I woke up about 3 a.m. and felt so nauseous. I managed to slip back to sleep for a few hours but by 6 a.m. I was up. Everything was hurting. Joints, head, tummy. Oiy! I took a hot Epsom salt bath and went back to bed. Yet again, we had to cancel with friends. But I just couldn’t even “suck it up”!  I mean, have you ever felt that kind of nausea where you just do not want to move because it makes it worse? Yes, that was my Sunday in a nutshell. I was literally in bed all day long. And no reading or anything productive. The little a/c window unit on high, the curtains drawn, and the heating pad on full blast was what my day entailed. I finally crawled out of my cave about 7:30 p.m. and ate some corn on the cob.

Today is better. I’m exhausted and my stomach is still making some strange noises but overall, I feel like I am going to make it. I really thought I was doing a decent job on detoxing but maybe not so much. I am just so grateful that it is summertime, and I can manage this disease a lot easier and without inconveniencing a bunch of people. Of course, I am sorry to have missed all of the fun with our friends. Trying not to beat myself up about letting people down is a real struggle for me, as I am sure it is for all chronic disease warriors.

Again, I hope this was weekend you were able to make some great memories, – B

Derailed

Hello out there! I apologize for being gone for so long.

I had a bit of a scare though, and it has been a struggle to get back on track. So I caught a cold at the end of March. It was the 3rd one I have had this year; the immune system is shot and I am a teacher. The odds were not in my favor. Also, it was a stressful time of year, state testing, and I guess all of this made for the perfect storm.

On a Monday, I got up like I normally do. I had coffee and started to get ready for work. About 30 minutes later, I started feeling really dizzy and nauseous. It was terrible. My head started pounding, and I had to lay down. I could not go to work like that.I spent the entire day in bed, fluctuating between sleep and pain and nausea. The next day, the same scenario played out. Wednesday I went to my LLMD. She tested me for h pylori, EBV, and Mycoplasma. She told me to rest through the weekend.

I will tell you, this was a scary experience for me. With all of the symptoms I have encountered with my travels with Lyme, I have been able to manage them to a degree. But the dizziness? This was new and something I definitely could not control. I was out of work a week. I have never missed that much school, even when I got married. It made me start thinking about all kinds of crazy (yet possible) scenarios. I tried to figure out a Plan B,C, and D. None of those plans look too great. We need two salaries. I most likely cannot qualify for any disability as I have been working. I have been trying to save monies for an “emergency” in which I might use up all of my sick days and still need time off. But what if there is a point where I really cannot work? I don’t have an answer for this.

After all of my labs came back, it really wasn’t clear why I was feeling so terrible. By the end of the weekend, I was on the mend, but again, there really was no clear answer to why I felt the way I did at all. In my own medical experience …ah,hmm, I am guessing that my body was just done. The cold knocked me down and then along with the stress and the Lyme and Mycoplasma, I just didn’t have a shot.

Since that incident, I have been feeling a tad better. Less overall pain, more mental clarity than I have had in quite sometime and less fatigue. Go figure.I had 2 full weeks of feeling almost normal and now, the headaches and the joint pain is creeping back in. Anyway, I hope this finds you pain free. Take care!  Peace -B   #lymediseasechallenge

Off the track!
Off the track!

Havoc! And #LymeDiseaseChallenge!

Well, ladies and gents, it’s been a nightmare of a ride these past 10 days. Ironically, my last post was discussing the sometimes, most times, sporadic onset of symptoms. Then, tada! Totally happened to me. And the worst. I hadn’t been feeling all that great over Easter. I was having tummy issues, nausea, indigestion. And headaches. Really painful headaches. I missed a family member’s birthday celebration along with Easter since I was basically incapacitated.

Then it was Monday. And all hell broke loose. I got up and started getting ready as usual. About 25 minutes into my routine I began getting dizzy, lightheaded, and severely nauseated. Just like that. I laid on the bed for a minute, panting and hoping I wouldn’t throw up. I couldn’t go to work like this. No way, no how. I spent the entire day in bed miserable. I couldn’t eat. My stomach kept cramping and then the migraine made its appearance. Tuesday was yet an instant replay of Monday. No fever, but I could not stay upright. I have never felt this horrible before.

Wednesday I already had an appointment with my LLMD set. My mom had to drive me. I was afraid of a dizzy spell or whatever might show up next. I’d like to say my doc had all the answers. I wanted Doc to tell me that I could do *this and I would be OK. Alas, as it always is with Lyme and Company, not so much. My EBV is reactive and has been since January. I have a mycoplasma pnuemonia infection. I have one MTHFR mutation. I also now may have an hpylori bacterial infection which I am being tested for. My body is on the fritz. Overloaded by fighting on so many fronts at once, I don’t know, maybe my immune system has just given up. I was to stop my antibiotics, and I was directed to bed rest for the next 2 days through the weekend, returning to work Monday. Oiy. I told Doc that this is the worst I have felt since beginning treatment 2 years ago. Definitely scary and disconcerting. The rest of Wednesday was a replay of Monday and Tuesday. I swear, I haven’t slept so much in my life.

So here I am, resting. The nausea let up finally yesterday. I was able to eat a decent meal as well. Headaches are manageable. I feel like at least half a person now. Missing this much work had been distressing though. It worries me and while I want to plan for the future, what do I plan for? Right now, I plan for the Worst Case Scenario: I can’t work. Realizing many of my fellow Lyme sufferers are already in this boat, I am extremely grateful that I can still work and that I can manage these incidents for now.

While I am waiting to get my labwork back, Doc tested me again for EBV, mycoplasma, hpylori, thyroid (I have Hashimoto’s) along with ATP, CD57 and Lyme, I am wracking my brain about what I can change on my side to make things better. I definitely need to detox better and more. I think it is time to make a serious diet change. And most importantly, I need to embrace the fact that I am chronically ill and start working with what I gots. As the Indigo Girls sing, “What makes me think I could start clean slated, the hardest to learn was the least complicated…”

*you know, a pill, a diet, a one stop shop cure

P.S. My pretties, please do not forget about www.lymediseasechallenge.org and check out Dr. Oz and his segment about The Lyme Disease Challenge!  #lymediseasechallenge

www.lymediseasechallenge.org
http://www.lymediseasechallenge.org

I hope it is a pain free day – B

The Turbulence of Lyme Symptoms

http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html
http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html

One thing that I think all of us experience as Chronic Lyme patients is the comings and goings of many different symptoms. Oh, yes, there are some symptoms that stay with us loyally, never leaving our sides. But then there are those symptoms that show up off and on like fair weather friends. You know the ones. For me, my Lyme best actors are joint pain, headaches of some degree, and muscle aches. Best supporting actors? Nausea, dizziness, achiness, joint pain in other joints, well, I could go on. For me, the hardest thing about all of these is how they can come and go so quickly. I have tried to find rhyme or reason for this but there really doesn’t seem to be anything that is a consistent trigger, at least for me, other than overdoing in some way (physically and/or emotionally) the day before.

Sometimes, I can go for half a day with just some joint pain and a nagging headache. This isn’t bad at all! Then, BAM. Full blown horrendous flu-like symptoms. I have to get to a place to lay down, shut out the light, try and think about happy moments in my life because my head feels like it is hitting a wall. My stomach cramps up and the nausea is overwhelming. This is what I like to call the main event. It can last for minutes, hours or days. How does one plan for anything with these kinds of things happening seemingly out of thin air?

Like you all, I try to plan ahead. I hope and pray that on the day of a planned out, party, dinner, etc. that I will be feeling “good” and that I can attend. More than many times, I have had to cancel plans. I have even tried resting the day before but again, it doesn’t seem to effect the next day’s outcome at all. It’s upsetting, frustrating and most of all disappointing. Staying at home in bed is not my idea of a good time.

So for an example, my husband and I were out yesterday, picking up some items for our garden beds. Actually, it was nice being out and about, looking at all of the beautiful plants and flowers. I guess we were there about 40 minutes. By the time we left, my head was beginning to play its tune; it was time to go home. Once home, I had what felt like a flu. A strong headache, stomach nausea and indigestion and stomach cramping. I spent the rest of the afternoon in bed, nursing my symptoms as best I could.

Today, I was able to work a bit outside earlier in the morning. Feeling the cool breeze on my face and the sun on my back was pure joy. The dogs kept us company while my husband and I pulled weeds and cleaned up the garden area. My husband, a very sweet man, said, “I’m glad you are out here.” I was glad to be out moving about, too. One day at a time and sometimes, one moment at a time.

Happy Easter, friends. Don’t forget to take The Lyme Disease Challenge if you haven’t already!  🙂   -B