Hanging in There?

How it going on Disulfiram…

I’m not sure where the time has gone. With school closures in March, my SO and I were working every day trying to keep up with the changing directions for remote learning. I’m really not sure why/how time has slipped by so fast!

Without a true final day for the school year (at least for teachers), I didn’t actually segue to summer until like maybe the beginning of July. And now, we’re waiting patiently to hear if/how our district will deal with the beginning of school which as of today is August 24th. As teachers, we’ll be back earlier but we’re not sure in what capacity.

It’s a lot to think about and with things changing daily at the state level, I’ve just tried to opt out right now. There’s no sense stressing over something that might change tomorrow.

While I honestly was not a fan of remote teaching overall, it did give me an opportunity to keep my health in decent shape. I actually was feeling good with only a few lingering symptoms hanging on. There were still days where I would have flares I guess I would call them, but they were few and far between. I was able to do things most of the day, hitting a wall about 4-5 p.m. with a short period of resting.

However, back in May, one of my LLMDs suggested trying out Disulfiram because of my lingering joint pain, sleep issues, fatigue. And after doing some of my own research, I decided I would try it out.

I’ve been on a super low dose for about 2 months now. I was rolling right along with no issues and I was thinking, well, what’s the big deal? Nothing is happening. I started to doubt that it was working at all. And then, bam! At the end of June, I had about 3 full days of feeling like hell. I spent most of those days in bed. All kinds of symptoms were going on fatigue, headache, joint pain, stomach issues. I wasn’t worried about COVID because these were all too familiar to me.

Since then, I’ve felt somewhat better. Symptoms kind of come and go so overall, I’m not feeling great. I had a phone appointment with one of my doctors last week and the doctor said yes, everything I’m dealing with are side effects of the Disulfiram at work. It’s stirring things up and killing bacteria. With the die off comes the symptoms if the body can’t keep up with detoxing. Sounds crazy, right? But it’s called a herx. I’m starting some new supplements that will hopefully help with this process.

Overall, I’m having a bit of a tough time dealing with this both physically and mentally. Physically, I’m trying to keep things stable and I’m trying to listen to my body when it tells me something like I need to lay down. This has been somewhat of an adjustment after these past few months of feeling better and being able to not worry about not feeling well every minute. So an adjustment for sure. Mentally, it’s been kind of messing with me. I feel like I’m being thrown back into being sick all of the time (I mean I’m chronically ill but I was on an upswing), and it’s both scary and depressing all at once. My main goal is to try to remind myself that This Too Will Change. And damn, it’s hard! But things have changed before and they will again. If I’ve learned anything with this disease, it’s that for sure.

Now, you might laugh because after all of this, I’ve decided to switch from one doctor’s protocol with this medication to another’s whose approach is a bit more assertive. This means that in another week, my dose will increase, and so too perhaps will the herxing. Now, I can always, always lower the dose if things get too crazy. Why not stay on the super low dose? Because that means I will have no change in dose for 3 months straight. And from everything I’ve read, dosing should increase periodically. There are other reasons, but I’ll leave it at that for now. So, ironically, I’m pretty much doing this to myself!

However, people really are seeing results from using this medication. People who have suffered years and years with Lyme disease. It took me awhile to decide whether to do this or not, and if I’m going to do it, I want to try to maximize results. Wish me luck!

I hope all of you are doing well and staying safe out there. Happy weekend! – belle

Be Good to YOU

What are some ways you treat yourself well? In what ways are you kind to yourself? Please add your ideas to the comments below. 🙂

 

So we’ve (as in my husband and I – we are both teachers) been on summer break almost a month now. It has been pure heaven. What have I been doing? Producing? Well absolutely nothing, my dear friends. I’ve had some doctor appointments, dentist, eye doc, you know, just those things that have been impossible for me to manage while working because of the massive fatigue.

But otherwise? I have nothing to show. And how do I feel about this? Delightful!! Fantastic! Superb! It is down right, totally fine. I used to feel guilty about not doing anything, or not being productive every minute of the day. I was always busy. Now, at the time, I enjoyed being active, working, exercising, socializing, and such. But Lyme disease changed all of that.

Over the years (even before I knew I was ill), I’ve struggled with a lot of guilt and angst about not doing enough (these are, of course, self imposed standards of “enough”). I would push myself, as I always have, to make “things happen,” to “get er done” as we say in Texas. While resting, I would stress out about the things I had (self imposed!) to accomplish that I hadn’t completed. Then came along nausea, headaches, joint, pain, severe fatigue. Well, all of this made for a witch’s brew of toil and trouble!

Now, I admit, it has taken time to make this change and there are still times when I click into that previous me mode, and I take it to the limit. It’s usually not a good thing though and if I can catch myself before that manic phase kicks in, well everything is better overall. 

Looking back over my 15 years in education (I worked 10 years outside of education so I most definitely appreciate the time off), I realize that I have worked almost every summer for the first 10 years. First, out of necessity, and then, for the extra money and experiences. These past 3 summers of Lyme have been about treating and resting. Actually, the first summer after being diagnosed I taught a 3 week class. What was I thinking? At the time, I thought, oh good, extra money and this Lyme thing will probably be done by the end of this summer after treating for about 4 months at that point. HA HA!!! That was BEYOND wishful thinking for reals!

Anyway, I know this post is kinda all over the place, but I guess one point I am trying to make is Take it Easy. Don’t Kill Yourself trying to do everything you did before. Your body has to heal. You beating yourself up about it is certainly NOT GOING TO HELP your recovery process. Believe me, I learned this the hard way. 

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Source: http://www.Keepcalm-o-matic.co.uk

 

 

What are some ways you treat yourself well? In what ways are you kind to yourself? Please add your ideas to the comments below. 🙂

Remember Please:

BE GOOD TO YOU!

Peace – B

A Forced Break

Maybe a herx?

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Today has been a tough one symptom-wise. Since we are on break, the last few weeks have been pretty sweet. I can rest when I need to so this helps immensely. But today. Oiy.

I’ve had overall soreness since I awoke at 5 a.m. My lower back, hips, right knee, and ankles have been aching. I canceled an appointment today because, well, yeah, I wasn’t making it. The bed has been my constant companion today along with 2 heating pads and some medication. Oh and some loyal puppies. Maybe I’m herxing. Its been a week or so since I’ve had one. IDK.

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Chino

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Pico

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Boo aka Bipity Bobity Boo Boo!

But tomorrow is a new day. The quote above just spoke to me in all the right ways. I hope all is golden in your neck of the woods. Peace, friends -B
P.S. Pups in a row from top: Chino, Pico, Boo Boo. 😍

New Symptom, Or…?

Lyme disease affects each person in a variety of ways. It manifests itself differently and thus, this makes it even harder to diagnose correctly and treat correctly. Lyme disease is frequently called the great imitator. In many cases, Lyme is misdiagnosed as Lupus, MS, CFS, and FMS, along with several other illnesses.

For me, when I was so very sick, some of my more prevalent symptoms included neck pain, daily headaches, severe fatigue, joint pain, sleep disturbances, lower back pain, and nausea. I also had severe brain fog, memory issues, and neuropathy in both feet ranging up to my knees. During the course of treatment, some of these symptoms have subsided. But there sometimes are symptoms that I never had that will just randomly crop up. And I’m like, hey what’s up? Where have you been all of my life? Not.

Joint pain seems to migrate around. While my right hip was constantly in pain for, well, I don’t know, maybe the first year before and then after diagnosis? But then, for awhile in the spring of 2014 my right wrist would hurt off and on. It continued like that for about 3 months and then, bam, it was gone. My ankles sometimes will ache so badly. I bought these crazy ankle wraps at CVS. The inserts can be heated then you wrap the big, chunky, bright blue wraps around each ankle. It helps but there’s no way to wear these at work. Anyway, surely the fashion policy would stop me! I’ve taken to keeping several sizes of the analgesic patches everywhere. These work for the short term so at least they provide a bit of relief. I’ve never had knee issues which is interesting as this seems to be a classic symptom of people with Lyme or so the CDC says.

And then lately, my left elbow and now forearm is hurting. It started in my elbow in early November. It’s an achy and sore kind of pain. I figured it would be gone by now, but it actually these past few days seems to be getting worse. The pain is now also in my forearm. Heat helps. I’m not even left-handed. I’ve been putting off dealing with it; however, it is really is hurting almost constantly now. When I see my doctor next week, hopefully, she can help me out. Or at the very least rule out other possibilities besides Lyme.

It’s always a big surprise with Lyme! Never a dull moment! At least the daily hip pain, and the neck pain is pretty much gone now. I’m just glad that not everything hurts at the same time. When that happens, life just plain out sucks.

I hope everyone is having a good weekend, and I hope all my peeps up North are safe, snug, and warm. Cheers -b

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Warm, Warm, Cold!

It was 80 degrees here yesterday, a/c on, hair frizzies and such abounded. Today? Why, it is 46 degrees! Getting up was tough. It was a 3 hour process. We woke up at 5 a.m. Hub’s alarm went off; he was taking the kids to an outside event today. I had to give one of my dog’s his medicine. I switched the a/c to heat and then jumped back into bed and turned on the electric blanket. AAH. But lights were on, and activity was happening, the dogs were restless. Almost falling back to sleep, Boo woke me up trying to play. About 6 a.m., I gave in and got up, made coffee, crawled back into bed and watched a little Netflix with the free tv juice (satellite) until 8 a.m. I just couldn’t coax myself out of the cozy, warm bed.

Everything is sore for the most part. It’s the damp that is getting me. When the front came in last night it rained, the damp sleathly crept into the stillness of my bones. Hips, lower back, ankles….these are the places the cold likes to settle. My BFF in the winter is a heating pad. I seriously have about 5 of them pretty much everywhere! School, couch, bed, office chair. I really need to get a heated car seat! Maybe Santa can check that out for me.

It’s been a good week. I’ve done more this week than I have in the past 2 months, or at least it feels that way. For the most part, my energy has been decent, and my mood has been a positive one. One thing I have realized this break is that I’ve become overly cautious. What I mean is this: I never know how I will feel after doing something out of the ordinary in my daily routine, whether that is an extra hour at work, taking on a project, going out to dinner, etc. With this in mind, I go about my every day doing the known routine and scared to do anything outside of this routine because I don’t know what the result will be. I know this sounds a little crazy, and it kind of is, but my worry is that if I break my regular routine and overdo, I may be paying for it longer that I want to or can afford to financially and otherwise. So, I err on the side of doing less.

The result of playing it ultra safe has been that I have sacrificed some of myself and my relationships with others. It is true. And this does hurt. It’s just really hard to figure out a balance as far as my energy tank  is concerned so there isn’t a terrible backlash. I’m not sure how to navigate this new found obstacle I am now aware of.

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In perspective though, I am grateful that I have energy to worry about doling out.  This is a definite sign of improvement and I’ll take it. Any tricks or tips you can share about managing your energy account?

I hope you all have had a good, pain free week. Until next time, stay frosty – B

Fire in the Hole

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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