Category: chronic illness

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

Sometimes, I forget…

Sometimes, I forget how very sick I have been. I wonder if this is a survival technique the body uses to keep us going.

Sometimes, I forget how very sick I have been. I wonder if this is a survival technique the body uses to keep us going. Perhaps it keeps us from lingering too long in the abyss.

Just recently I’ve had a few experiences that have thrown me back to 3 years ago, or 4 or 5 years ago when all I knew was sickness. Years upon years of 24/7 torture. When it was all I could do to get to work 3-4 days out of 5. When the daily headaches and fatigue laid me out and if not, then the nausea and the mental confusion took over. When I was so exhausted minute to minute but then I couldn’t sleep. I was in a haze, a fog; if there is a hell, I was in it. And in it for years on end.

It’s so hard to describe to other people, people who are healthy or even semi-healthy, how sick I’ve been. Even for me, trying to remember how bad it has been is a challenge. Finding the words are very difficult, finding analogies that will convey the pit of illness are not easy to find.

When I was in the Worst of Lyme disease (at least I hope it turns out to be the worst of it), there were so many symptoms, both physical and mental that were going on simultaneously and sporadically that keeping track of these was near impossible for me. I tried writing things down, but that took just way too much energy and energy of which I had none to spare; I couldn’t manage it. I tried tracking apps but even those proved cumbersome.

Maybe it’s like being in a pool underwater and trying to talk to someone. You’re asking for help. You’re holding your breath, but also trying to communicate, but you are also running out of breath. It’s not an easy feat and in the end, no one understands what you are trying to say and there you are, left alone.

All of this is to say that obviously, I am making progress in my recovery. It’s just sometimes, I forget. In fact, I told some of my friends the other day that while I definitely want to keep improving my health, if this is it, if this is as good as it can get, I will take it. I still have lingering symptoms. I still have flares and cycles where things take a downturn and I’m sinking into the pit once more. But much of the time, I am better than I have been in a long time and damn, that’s something and something to hold onto.

Friends, I hope this finds you and yours safe and healthy. I’m thinking of you all.

Peace – Belle

Should I Keep Trying to ‘get well’?

Oh, yes. The elusive treatment that will bring the “cure.” I’ve been down that path a few times.

Oh, yes. The elusive treatment that will bring the “cure.” I’ve been down that path a few times. When is it okay to be okay with where I am right now? It sounds like “giving up”, but is it? When does pursuing treatment actually become harmful?

Honestly, I don’t know the answers to these questions, but in a week or so, I am coming up on the 7 year anniversary of my Lyme diagnosis. And it’s already been a decade at least that I have been ill in some form or fashion. So, these questions are on my mind.

I can’t change the fact that in the USA, Lyme disease isn’t treated as serious even though according to the CDC, more that 400, 000 + are infected yearly. Even these numbers are low due to reporting issues. I can’t change that almost no monies go into to researching this disease, that testing is only maybe 30-40% accurate and that there are only experimental treatments beyond the IDSA doctrine of 4 weeks of antibiotics. I try not to think about any of this anymore because it is a waste of brain power. See more about what the CDC says here: https://www.cdc.gov/lyme/postlds/index.html

But this leaves me, like thousands of others, in limbo: do we continue to try things that might help lessen our suffering or do we accept where we are right now? These other optional treatments can break the bank and are certainly not covered by insurance, and in many cases, they work for a bit, but then we are back where we started. Now what?

Am I in a better place than I was 7 years ago? Heck yeah. And for that I am grateful. But I’m still dealing with fatigue, memory issues, word loss, joint pain, and insomnia. One doctor tells me that most likely, this will be as good as it gets. Another tells me to try alternative therapies that cost an arm and a leg and/or have not been researched enough. Which way do I turn?

I absolutely love my Integrative doctor, do not get me wrong. This doctor helped me out of a very dark place about 3 years ago, and I have made progress with this doctor. S/He definitely has a good heart and wants to help me. But the last treatment we tried – a nasal spray to be basic – costs a lot. Now, S/He encouraged me saying, ‘it really can be a game changer.’ I couldn’t pass something like that up! I did the pre-testing $200 (to make sure my body was ready for the treatment covered by insurance) – and I ordered the spray – one month supply $250 (not covered by insurance). And while for some this isn’t much money, for my family it is. When I ordered the first month supply, I wasn’t sure if I would be able to continue if needed another month at $250. I figured we could manage it somehow, especially if it were working!

I began the nasal spray – 4 times a day – around Thanksgiving. I stayed on schedule, making sure I didn’t miss a dose. I mean “game changer”, my people! But you probably already know the outcome – meh. Nothing seemed to change at all. When I asked the doctor through our patient portal is I should continue, the answer was yes, but only if I were seeing results. So.

To say I was disappointed that there were zero results is an understatement. But was dumb of me to put any stock into the possibility that this could be The Thing to help me progress in my ‘journey towards wellness.’ Then I had doubts about my own possible culpability. Was it something I did to somehow mess up the treatment? Did I miss a few doses somehow during the holidays? What did I do wrong?

All of this is just plain old exhausting, isn’t it? While I surely do not expect ‘a cure’ I would like to make a little progress from where I am now – about the same place I’ve been for a couple of years now. But maybe this is it. This is the best it will get. And if so, can I be OK with this?

I’m not sure, friends. I’m just not sure.

Still Chronically Ill

Am I still chronically ill?

I’ve been less focused on writing lately. I can’t quite put my finger on it. Reflecting, I think it is because, well compared to say 2 years ago, I think my health is a bit improved. Honestly, it’s hard to say and hard to measure. But in my mind, and my husband agrees, I am doing better overall. And so, I find that this makes it more difficult to write than when I was much sicker. Weird, right?

I think this is due to my wondering: what can I write about as a semi-sick, semi-healed person that people would actually be interested in reading? If you have any ideas, please let me know!

While so many of my symptoms have all but disappeared, I am still trying to work on insomnia, joint and muscle pain, memory and concentration issues, and fatigue. Sometimes, these wax and wane, although the insomnia issue and the fatigue are cornerstones of this Lyme journey that continue to remind me that I am chronically ill. Oy.

One other issue I am struggling with is actually accepting the fact that I am chronically ill. It was much easier to embrace it and own it when I really felt so very terrible every single day. For years on end. Now that I have some relief, and there are times I can participate in life in ways that haven’t been options for me – again for years – it is much harder to keep in mind that I am in fact, still chronically ill.

My mind likes to play tricks on me, or maybe it is more my body that plays the tricks. An example would be this: I used to have terrible migraines. I had never dealt with anything like this before Lyme disease. The migraines started about 18 months into treatment. And they continued for about 12 months. A good one to 2 a month. Learning to deal with those was only one part of a puzzle I still do not think I have all of the pieces to. And then, they stopped. I haven’t had a migraine for quite awhile. So, one more symptom I don’t have to deal with and I think, hey, I’m ok. I think, I’m so much better off than so many others. I’m making progress. I can’t really say I am chronically ill because, well, I had migraines and now I don’t.

How can I be both better than my worst 3 years ago, or 6 years ago, and yet, still be chronically ill? This is something I am truly trying to figure out for myself. I don’t have an answer. I savor the minutes and sometimes hours I feel better, and I survive through the ones when I don’t.

I hope all of you are doing well and that Thanksgiving was good to you and to yours. Take care. – B

Summer 2019

Here’s what I’ve been up to: not much!

When summer started, I needed a couple of weeks to decompress. I was wiped out completely by the very last day of work – teacher workday. My brain was not working well at all, and I was having some medium to severe lower back pain and right hip pain. As I walked out of our campus doors on May 31st, I wasn’t sure what the summer would hold for me healthwise.

I had 2 goals for this summer: get off of the sleep meds I’ve been taking for several years and to try and add some exercise to my daily routine. I stopped taking the sleep medication immediately. I’m not going to lie, it was really tough the first week or so. I would go to sleep and then I would keep waking up almost every half hour to hour most of the night. I almost caved in before things started looking up.

My sleep had not been improving on the sleep medication this spring at all. In fact, insomnia is now one of the lingering symptoms I am dealing with as far as the chronic Lyme is concerned. I spoke to my in-town doctor about this at my June visit, but remember, she takes insurance and if I am lucky, I get about 8-10 minutes with her. It is impossible to discuss much in that short of a time frame. And at this appointment, I wanted to focus on the deep hip pain I’ve been having since February so that was the topic of our brief visit. Let’s just say she didn’t help me with that either and leave it at that.

I really wanted to use the summer to try and get a regular, good sleep pattern back if at all possible. So I endured. I haven’t taken a Lunesta since June 1st. I do take time released melatonin and Valerian Root before bed and a supplement of DIM my out-of-town doctor suggested. I’m not saying I haven’t had some tough nights. I have. But overall, I’ve been pretty happy with the results of stopping the medication. While I still wake up a few times every night, I’m able to get back to sleep most of the time.

I’m sincerely not sure what I will do if, once back at work, I can’t sleep well. Not sleeping well for weeks and/or months at a time is just so horrible for me on so many levels (for anyone really!), that I will probably have to go back to Lunesta or ask my doctor for a different sleep med if that happens. I won’t make it if I can’t sleep. I am sincerely keeping my fingers crossed that I can maintain my sleep naturally!

My other goal this summer was to add a bit of exercise if possible. Before Lyme, I liked to walk 2 miles a day and do yoga. I always had a strong energy level so I could do these before school or after school. But these past 6 years, I just have not had the energy to do anything. Even just working has been a serious challenge for me. When summer started, I added 30 minutes 5xs a week on the elliptical machine I’ve had sitting around for years LOL. Oh dear God, the first 2 weeks were not fun, my friends. Wow. I knew I was out of shape but DAMN! But I have been able to continue this workout 5xs a week all summer! I am so happy about this! I want to be optimistic and say that yes, I will continue once I head back to work August 12th, but I just don’t know. I need to be realistic. Look, I am going to try. That’s all I can do.

To be honest, I haven’t done a lot this summer. We went to the river 3-4 times this summer which is always great but otherwise, I just did some cleaning at home and enjoyed the time off. Oh, plus a few doctor visits! My hip has been killing me so I am trying to figure that out. That’s for another post though.

I hope you and yours are having a good summer! Take care – B

Image by Ursula Bodnar from Pixabay

Happy Summer!

What are you up to this summer?

Yep. Summer has arrived. I’m on break, and I’m trying to make the most of it.

I promise to do a longer post soon. But I just wanted to check in and say hello! I hope your summer is of to a great start. So far, mine’s been good. I’ve had a few doctor appointments and a visit to one of my previous hometowns to visit family and friends.

We don’t have massive plans and that is totally fine with me! My husband will be taking a trio to Colorado with his parents soon. I’ll stay home though to take care of our numerous dogs. There’s just too many for anybody to handle and so it is what it is. I’m a little bummed but also traveling can be tough on me so it may be a blessing in disguise.

I’ll get you caught up on the latest of my Lyme journey ASAP. Again, I hope you are well. Take care, – b

End of Spring Break

We head back to work tomorrow after a week off. It was a much needed break. Looking back at the time span between January and March 8th, I’m only just now realizing how stressed I was.

It took 2 days to decompress. The stress had compounded, and I didn’t do a good job of handling it. I drove myself very hard to try to finish all work within the work day schedule; it is difficult to muster the brain power and energy to do much of anything when I get home. And so I pushed and pushed. But I was still bringing home planning and grading to do week nights and weekends.

I’m not sure how or why after 18 years of teaching I forgot that this job will break you if you let it.

And I let it. By the time this break started, I was a complete mess and many symptoms were flaring up, especially the Neuro issues and the pain.

I did spend time on work – about 5 hours- this week. It was on things that have a deadline asap. But I limited the time I spent. Because, if I had finished everything else, I would have worked 4 days of this break at least. No lie.

Of course this means that this coming week, when I’m back in classes, that I’ll have 150 research papers to grade, the marking calendar to finish, along with grading the writing and quizzes we complete this week.

It will get done. I just need to pace myself better. My health should be my priority, and I let that out of my sight. Time to get back on track.

I hope you’ve had a good week and that signs of spring are evident! Happy Saint Patrick’s day, friends! 💚💚💚-b

Newton at San Marcos river

What A Week

Last week was crazy and made me crazy!

I wasn’t sure I would make it through last week. It’s almost Spring Break, and I teach  high school dual credit English courses. We are in the midst of our research unit. Must I say more? Truly, it is the unit I love and despise the most. I love it because I get to talk with students about their interests, what they think about topics, and their ideas. I despise it because students usually have not been required to do any kind of research in the past (or if some, very little) and so there are so many things they need to learn that it becomes very overwhelming. Especially when there are 145 of them and one little ole’ me.

But every year, I consider changing up this unit, and I just don’t. One of the most challenging things for students is that they get to pick their own topic and narrow it for the paper requirement (take a position). This really throws them for a loop. Choice? What do I want to do? I have freedom?  While I could just assign them all the same topic such as: Take a position on whether we should continue to use the death penalty in Texas, I just can’t do it. I feel like doing it that way just isn’t authentic.

And so here I am. Tackeling so many different topics from all kinds of perspective which I love/hate. Plus, this past week, my brain has been very, very jumbly. I don’t quite know the exact word for it. But while on a good day I still struggle with cognitive issues, word loss, brain fog, last week it hit an all-time high of barely functioning. And while I am a little worried, I honestly think it is worse right now because of all of the stress.

A new symptom though that has popped up, is changing aroung letters. That hasn’t happend to me before. Yes, I can’t remeber certain words many times. Easy words like door or watch. But this past week, when I would go to type or write out a word, I would begin to jumble the letters. Strangest thing ever. I would never get further than about 3 letters in and realize – What the Heck- but again, I’ve never had this before.

 

chaos-3098693_640.jpg

And of course, between struggling for words, short term memories, and spelling correctly, the angst from that caused more stress for me. I am fully aware of what I can’t do. But no matter ho hard I try to get my brain to work correctly, it doesn’t. To some degree, it’s easier to be at work with these issues that anywhere else. Sounds a little cray, right? But I think that after 18 years of teaching, that environment I have to some degree mastered in a way I can function and cover up my brain issues.

In other areas, not so much. My husband has been frustrated with me because I can’t communicate well. I sometimes don’t remmeber things he tells me. I can’t speak well. I told him the other day that I was really struggling with brain issues and that it was way worse this past week. He said, “Well, it’s nothing new.”  And while I think he was trying to be nice and blow it off, I won’t lie; it really hurt my feelings. But maybe it’s the truth and one I don’t want to hear. I see one of my doctors March 11th and I’m definitely bringing these issues up.

Anyway, back at it tomorrow. The weekend helped a bit, but my brain is still not back to a good place. I’m hoping during Spring Break, my brain will get back on track. Or at least seem that way to me so I can pretend I am doing better!  I hope your week went well.

Take care – Belle

Living the Dream

Hi my people, well to say it’s been awhile would be an understatement. It’s been months, lots of them. I’m not really sure how I got off track, but I sure did. I hope this finds you all well. I hope you managed through the holidays and Happy New Year!

I wish I could say I’ve been kickin’ it up and having a grand ole time. And maybe some of the time during my lapse, I could say this. Of course, some of the time has been surviving, making it to work, and trying to not miss too many days at work so, you know, I get paid. So far, so good.

Treatment-wise, let’s see. Really not much has changed. I’m completely off of antibiotics, and I have been now for a good solid 2 years. I still take supplements and those change off and on. My thyroid seems to be working well and overall, the fatigue is less.

Sometimes, I can almost forget about the Lyme disease. But not completely. Last summer, I battled a weird rash and had about 6-8 doctor appoints in a 2 month span with my LLMD, dermatologist, allergist…all to the conclusion that we really don’t know what is causing it. I haven’t had an issue with it since last summer, so I am hoping there won’t be any recurrence. Fingers crossed-always.

Many symptoms have cleared up – the migraines, the lower back pain, the neck pain; I could go on….  But I am still dealing with fatigue and memory issues. I’m unsure if these things will ever be optimal again. My integrative doc has me on iodine drops, and we’re working on hormone balancing now too. She would like me to try the 3 Pass at my appointment in June, but i’m kind of a scaredy cat about it! I have no idea why!

It’s coming up on the anniversary of 6 years treating this disease. It is also then been about a decade since I first started having very noticeable symptoms. It’s strange then to wonder what I would actually be feeling like a decade older with the Lyme disease. Hard to say.

I’ll definitely try to be more on it and post more! I just feel boring.  And I’m not sure what people might want to hear from a person with Chronic Lyme disease. Hey, I’m still sick! LOL!

If there’s anything you want to hear about or questions I can answer, please, please let me know. Until next time, take care.

Peace – Belle

P.S. We love dogs and have several strays, so lots of puppy pics! 🙂

Zola
Zola all snuggled up!

And the Thunder Rolls

What am I doing all summer?

It’s 9:20 p.m. and lots of thundering going on. Not much else though. If we get rain, that would be awesome. It rained all day on the 4th which is unheard of for the most part here in this area of Texas. We were grateful then. If we get more tonight then, boy, howdy!

The summer seems to be speeding right along and while I’ve learned over the years, unwillingly I might add, not to have nor to set any crazy goals for summer break, I do it anyway in the way back of my mind. I know I’ll be disappointed because well, chronic illness. All the magical thinking I conjure doesn’t change the facts that there is much I just can’t do anymore or I can’t do for any extended period. Ugh.

I wanted to start adding some exercise. Maybe yoga. I used to get up early before work years ago and do a 35 minute yoga session daily. I loved it. But that’s way too much right now. I got a yoga stretch DVD. I’ve done it a few times but nowhere near what I thought I would/could.

I need to work on school stuff but every time I sit down to do it, I just can’t stay focused. I reset but it only helps for a bit and then- what was I doing?

The more time goes by, the more I realize what I haven’t done, what I haven’t accomplished, what I haven’t produced. It’s all just expectations I’ve put on myself. I know this fact, but I still feel unsettled about not doing more with my time off.

But it’s been good to be off of work. I can rest when I need to. I can do basic chores. I can cook. I can clean. We’ve gone to the lake a couple times-just for a few hours- as the heat is killer for me. I’ve also been reading a lot. Picking up reading again, longer pieces, has been a true joy. I lost the concentration skills when Lyme showed up, and during my first 4 years of treatment I was so sick I just couldn’t manage it well at all. I have like 10 ebooks checked out from the library and several others on hold. I’m very happy about being able to read longer texts again!

Well, the thunder has moved out of here with nothing to show for all of the drama. I guess it’s just a heat storm.

I’m going to try to get some sleep. Happy dreams, friends. xoxo – B