Tag: #chronicillness

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.

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

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!

River Staycation

Yes, Newt has a shark life vest!

We decided to do an overnight trip to a major river about 3 hours from home this past week. My husband loves a particular spot, and the river is spring fed so it is nice and cold. Temperatures here are now are hitting 95-100 degrees with a heat index of 105+. It’s really hard to find fun things to do that do not require you to be outside between say 9 a.m. until 9 p.m.! Fer reals. I just can’t do the heat at all.

We also decided to take one of our several dogs, Newton, as he has made a trip to Colorado (17 hours in a car) and did very well. He is also very well tempered and loves to socialize. We weren’t sure how he would do in the hotel, but we figured worst case, we could make the trip home that night if needed.

Needless to say – he had a blast! He met all kinds of new people and other dogs. He swam a bunch. He had many adventures! Staying in the hotel went well. He barked just a few times but nothing major. He passed out and slept all through the night. We will definitely be doing this again!

As for me, I did pretty well, too! I’m pretty rested up from not working, and the river has great places that are shaded so I didn’t overheat. My fatigue has lessened over the past month or so and I was able to keep up. Overall, we had a wonderful time. It was great to be outside and to enjoy being active!

Hoping your summer days are joyful – b

Rashes, Rashes, We all fall down…..

Happy Sunday out there! We are having some very unseasonable cold weather with the high yesteraday at a 50 degrees! WHAH? In April? It’s been pushing 80 this past week but then a cold front rolled in. It is probably the very last until September so we will take what we can get and enjoy it fiercely!

The past 30 days have been pretty unfun. I mean overall, it’s been a good month. But healthwise, it’s been well…strange. Since and before contracting Lyme, I have dealt with weird rashes. I have very fair skin and red hair so it comes with the territory. But in the past 2 years, I’ve had some bouts with rashes on my face and hands that have been really challenging. There also seem to be no answers to the Why I get these cropping up periodically.

Daisys

Right after Thanksgiving, a rash poppped up on the right side of my face. It itched like crazy. But I babied it and it cleared up within a week. I didn’t bother to go to a doctor because in the Spring of 2016 had  had the same, even worse though, and did the whole shebang of treatments including a dermatologist visit that rendered: No skin lupus diagnosis. Let’s just say it was a massive waste of time and I found no answers. You can read more about it here The Damn Rash is Back. 

So back to 30 days ago. The rash again started on the left side of my face. My eyes swelled up. Patches began showing randomly on my arms, legs, neck. UGH. I had an appointment with my LLMD already so I waited until I saw her about 10 days later. The rash still hadn’t cleared and was making me crazy, espeically in the evening when it flared up and itched so horribly. I literally had no expectations as my faith in my LLMD here in town is seriously wavering.

But, she gave me hope! She tested me for alleriges and I tested nigh for all. She put me on a steriod pack and gave me a steroid shot. She wanted to start me on allergy shots. Things were looking up! Within a few days, the rash was clearing up. I could sleep and wear my contacts again! Yippee!  But not so fast.

On March 26th, I went back to the doctor’s to begin the allergy shot regimine. The rash from the previous 3 weeks was all but gone. I picked up my shots, instructions, and plan. I also received 2 small shots to begin. I would take another 2 shots on Thursday and 3 days from then on for 6 months.

Then, Tuesday happened. I woke up. Both eyes were seriously swollen and red. The rash was back on my face. I called the allergist. She was very surprised as I was started on the lowest dose. By Wednesday, the rash was all over my stomach as well. WTF???!!!

I had to take another day off of work and returned to the doctor the following Monday. She insisted that I see a dermatologist again. She also told me to take the shots again on that day….WHAT?!….and told me if it got worse….WORSE???? ….to take another steroid pack she was prescribing me. I refused to take the allergy shots and left very angry.

Side note: While my LLMD here in town did diagnose me with Lyme, thankfully, and she did save my life I believe, she just doesn’t not have the time nor the tools to treat chronic illnesses in a  capacity needed. Or maybe in my case. I’m not sure. I continue to see her because she is close. And I need a doctor here that knows Lyme. And she does. However, increasingly, I get frustrated with her and her lack of assistance now that I am starting to improve but still no where near well. My other LLMD is about 3-4 hours from here so I cannot run to her when I have thes kinds of issues. I also can’t get in to see her ASAP. Appointments for her are booked out 3-4 weeks. 

I tried that Monday to get into a dermatologist. But they are also booked up. One office I called said May 2nd was earliest appointment. The rash was killing me. I finally broke down and started the 2nd steriod pack this past Thursday. The rash is almost cleared up again.

I have no idea what is going on. I also do not believe a dermatologist will be helpful. Plus, I have no rash to biopsy now. I refuse to try the allergy shots again right now. They are sitting in the fridge but I just can’t chance it. True, I could get the rash again just due to regular allergies. BUT I am not tempting fate by giving myself a shot right now. 

I’ll see my out of town LLMD in July. I tried to get on standby this past week but no dice. She has an email service that cost annually I am considering. It gives complete access to her as needed via email. I’ve heard good things abut this especially for the out of town patients such as myself. 

So that’s been my eventful month! How are all of you doing? I hope your journey in recovery is going well, friends. Until next time.

Hugs, Belle

 

You’re Kinda Cool

Sometimes, you rock it!

Howdy out there! In  our neck of the woods, we’re enjoying the 60 degree weather and the World Series brouhaha. We’re also hoping the Astros win!! Fingers crossed.

So, I’m off of all antibiotics now for Chronic Lyme. It’s been about a weekish. In the past 10 days, I have been feeling the fatigue creeping back in. Not drastic by any means, but I can feel its weight. By about 1 p.m. in the afternoons now, I’m pretty much  done and I’m ready to go home and rest. A few nights this past week, I have gone to sleep by 7 p.m. While I’m not noticing a lot of other symptoms, I’m still worried and pensive about not being on medication. I did blood work last Tuesday, so hopefully the results will be back this week and I’ll hear from my doctor. 

I know I shouldn’t worry and that “it is what it is” but easier said than done. It’s hard to find a balance between ignoring and obsession! I am trying to be hyper-vigilant without being a freak. Hmm.

Work is going well. My students are great, and I think we all adjusted after Hurricane Harvey postponed our start for a few weeks. It still feels weird though that Thanksgiving is just 3 weeks away. How did that happen?

shrugging.jpg

 

Anyway, being a teacher and one that is chronically ill, 5 performances daily can be extremely difficult (teaching is a demanding job even when one is healthy!). I work hard at projecting an energetic and positive image while in the classroom regardless of how I may be feeling. My audience is 15-17 year olds, and they can sometimes be a very tough crowd, even on a good day! 

But here’s a note I received in my mailbox from one of my students on Friday:

“You’re kinda cool, I guess.”

I literally laughed out loud. Really, this is like receiving an Oscar in my line of work. I’ll take the wins when and where I can get them.

Stay kinda cool, my peeps. Have a great week! – b

I Still Gots the Lyme!

Hi all!! I know it’s been a skip and a beat. The aftermath of Hurricane Harvey ate up much of my time, then school started. Starting school 2 weeks late has thrown things off and so, I admit, it has taken me awhile to get back into the swing of things. I honestly didn’t realize that it had been so long since I had posted.

I hope this finds you and yours well. While the first day of Fall has come and gone, I can attest that it certainly has not arived whatsoever here in Houston much to everyone’s dismay. In fact, yesterday, the high was 90 degrees. No bueno. Yes, the shadows are changing, birds are gathering, and clouds look “fall-like” and yet, it is no cooler. I believe there is a cool front rolling through this evening (LIES!), but I don’t dare to look at WeatherBug and be disappointed again.

Pumpkins1

But hey! I still have Chronic Lyme disease! However, the months of July, August, and most of September were the best I have felt in the past 4 years!!  It has been like the clouds in my brain cleared away and the sun felt brighter and life was more beautiful. Sincerely.  When I saw my OT (out of town doc) in September, she asked me what I thought was working and making the difference. Here’s what I told her:

  1. the additional thyroid medication she put me on in May,
  2. being off of work (I had all of June, July and half of August off completely),
  3. and maybe the combo therapy of antibiotics ahe put me on in June.
  4. But really, I don’t know for sure.

I started back to work in mid-August, then the Hurricane/flooding, then 2 weeks off, then back to work. This is week 6 of being back to work full-time. So far, it hasn’t been bad. But I can start to feel a change in my body. It feels like I’m slipping somehow, albeit very slowly.

At my OT doctor appointment in early September, my doctor decided that it was time to start weaning off the antibiotics. I was hesitant but I also know that we have to see if I can manage without them. I have been on Rifampin since March and on Ceftin and Zithromax since June. I eliminated Zithromax first, then Ceftin, and this is my last week on Rifampin. I felt alright without Zithromax. But the week I stopped Ceftin (about 3 weeks ago), the daily headaches seemed to return. 

At first, I blew it off thinking it was becuase I had a cold. But I can say for sure now that the headaches are back. I’m also feeling a little less energetic. Again, I doubt myself and make excuses – I’m back at work, I’m not sleeping as much, I’m…..but I know deep down that it is Lyme related. 

I’m giving it this week, and then I will contact my OT doc. She said to let her know if I start having symptoms again as I come off the antibiotics. Of course, I am having all kinds of thoughts, worries, emotions about this but that is for another post. 🙂 

I just keep telling myself not the dismiss ANYTHING nor any SYMPTOMS. I have to trust my gut on everything and that is OK. Lyme became CHRONIC in my system because it was left to go bonkers for years in my body.

That ain’t happening again. Not on my watch.

Pumpkins

 

Peace to you, friends. Until next time xxoo – Belle

 

 

Heading Back to Work Very Cautiously

Returning to work….it’s a hard decision!

Honestly, I’m not sure I wrote about trying to make the decision about whether to continue working or not this past spring.  I am a high school teacher in my 17th year now. This past March, my health and mental health were at the breaking point, and I had to go on a medical leave. That alone was tough. I was out lof work 3 weeks (one week was Spring Break). It was much needed time off to rest and get physically to a less fatigued state, and I was able to make it through the rest of the school year when I returned from leave. 

But taking a medical leave definitely made my husband and I have some serious and challenging conversations about whether I should continue to work or not. We’ve actually been talking about it for a couple of years now. But finances weren’t where we wanted them, savings wasn’t enough, we have a daughter in college….blah, blah. You know it all. Yet, in March, I was so bad, everything was so bad, that those things just weren’t that important anymore. If I had to stop working, we would deal with it. 

And yet. After some discussions with my husband, my family, and co-workers, I have decided to return for this school year. I’m worried though. And I may be putting myself into an awkward position if I have to leave in the middle of the semester or at semester time. I agonize over leaving my students like that, over possibly leaving my colleagues like that – basically in a lurch. But, work told me that I need to do what I can and what I want and if it comes down to a decision such as leaving then I will have to do it, and it will work out.  Bottomline is they would rather have me there for as long as possible then have me resign prematurely. This in itself is a relief of sorts. I know I’m replaceable; it isn’t that. I just don’t want to cause issues for others. Teaching is hard enough when everything is going smoothly!

Once I made the decision to go back, I was excited. Then, I transitioned to feeling freaked out. This summer, my health has improved. I don’t know if it is the new antibiotics I am on or my additional thyroid meds or a combo but it has been a real JOY! Yes, of course, I am off for the summer and so I can rest, etc. when I want, but I’ve been doing this for the past 4 summers and I can tell you for certain, this summer has been different. I’ve had days and weeks of energy levels I haven’t experienced in YEARS. YEARS. 

With this new found improvement in health, I am even more anxious now to return to work. Weird, right? I’m afraid I will lose this feeling, this energy. I’m fearful I will end up feeling so overwhelmed and fatigued that I can’t do anything outside of working (and even that became impossible in March). I don’t want this little victory for my quality of life to go away or be whittled away somehow.

I don’t know how I am going to handle the 8-9 hour days. Many of my physical symptoms have improved but what if I go into a flare? WHAT IF? I know I am making myself silly by worrying about thinsg I have absolutely no control over. I logically know this. I keep telling myself that I just have to take it literally day by day. Step by step. We’ll have to see how it goes. We have a Plan B…kinda.

dog-734689__340
Source: pixabay.com

Teachers start back tomorrow. We’ll have a few weeks of professional development and then students are back August 28th. I’ve only ben anxious since Wednesday. Off and On….all of today. The alarm is set, I have my bag packed, there’s not much else I can do, right?

I want to be excited, and I am. I’m beginning my 17th year of teaching, my Awesome department chair gave me the classes I want, the schedule that best suits my health needs, the team I want to work with. There is absolutely nothing to not be grateful afor and about! My biggest WISH is that I am able to complete this school year in a healthy state.

Thanks for reading and for listening, dear peoples. Peace – Belle