I do my best to try and keep it together. I can pretty much manage to do this at work, even on the tough health days, which are many. But once I am home, I just let it all out.
At times, I’m like a pot boiling over. The buildup from the day: hiding the pain, trying to be energetic, fighting the fatigue, dealing with 100 things at a time along with 150 students a day, can definitely wear me down. Then, I get home, there are animals to take care of, laundry to get washed…you get it. And if I am also dealing with symptoms that are heightened such as joint pain, or insomnia, the list goes on….well then something’s gotta give.
When things just get to be too much, I go into the closet to have a good cry. Yes, I said the closet. It isn’t a huge area but it’s big enough that I can lay down and stare at the ceiling. I can turn off the light, and it is nice and quiet in there! At one point, and sometimes still, lights and noise trigger me. So, in the closet, we can block out both!
I head in there and have a bawl, literally. It sounds dumb, but it is a safe place for me. I can just let everything out without censorship from myself or anyone else. While I hate getting to this point because I am usually just brimming with the stress of trying to fake it and/or dealing with the stress of multiple symptoms, along with just daily things in life (daily things I’m not very adept at doing anymore), once I start the big cry, I begin to feel better. In some ways, I think I am just giving myself permission to let it all go.
If my husband is around, he often times will find me in the closet when I am crying, or what I like to call processing :). He’s very supportive, and he’ll just hug me until I am finished. Sometimes, the dogs will sniff me out, and they will come in for support. By the time I finish up the tears, I feel more focused and aware of what is really important and pressing and what is not.
Do you have a favorite place to let it all out? Please let me know I am not the only one who does something like this! 🙂
When the anniversary of my diagnosis of Lyme disease comes along each year, I get a little freaked out. It’s irrational. But it does make me pause and reflect (which isn’t a terrible thing to do necessarily).
After about 4 years of experiencing what appeared to me as random and some migrating symptoms, after seeing 7-8 different doctors, mostly specialists, after having an MRI, a variety of blood test (more than once), and after becoming more and more ill, I lucked into seeing a doctor who tested me for Lyme disease. By the time I was diagnosed, I was very sick; I had severe daily headaches, joint pain, numbness in my feet, insomnia…the list goes on.
This March, it has been 6 years of treatment for Chronic Lyme disease. Ten years of being severely ill. And yes, I have seen improvement. The lasting symptoms that seem to never end are the chronic fatigue, the joint pain, the insomnia, and the memory/processing issues. Considering how long this list was in 2013, I can only be grateful for the progress I have made.
However, this anniversary also reminds me of what I am still struggling to deal with on a daily basis. That’s the part of this that gets me down sometimes. It’s hard not to compare the Before and the Now. And this comparison is only amplified by the years that have gone by.
The lasting and most enduring symptoms of this illness, at least in my case, are the fatigue, the insomnia (it’s so bad right now), the joint pain, and the memory/cognitive issues. Sometimes, it’s tough to see if there is any progress. I feel like these are things my doctors and I have been working on for the past 6 years. While I hope they become less severe, I also simultaneously realize this may be as good as it gets. I’m not sure I am at the acceptance stage in this case.
I hope spring is opening its doors in your world. Here in Houston, we are enjoying the mild temperatures before the real heat begins at the end of this month.
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.
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.
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! 🙂
Hi fellow travelers! Just a thought, if you are interested in even more mundane things I focus on, then please follow me on Twitter @readbtwnthelyme
First, let me pre-empt the onslaught of my complaining to say I’m Hella Glad it is Summer! I’m not sure I would be able to semi handle this stupid, horrible rash as such if I were actually working.
So, you may remember this Monster Rash attacking me..YES! Attacking me! in November 2017 with The Damn Rash is Back and again in March 2018 with Rashes, Rashes, We all fall down….. and here we are again. JOY! Now, I did have this similar rash back in April 2016 and June 2016 as well but let’s just keep it as simple as with my muddled brain this is as best I can do right now! Lord!
In June 2016 I was seen by a dermatologist who declared NO SKIN LUPUS and Excema and sent me on my merry way. No FU. Luckily, I thought the worst was over and did not have another incident until November 2017. This incident in November also started on one side of my face, then tops of hands. It stayed fairly contained, and I was able to treat it with topical creams and OTC allergy meds. I thought I was in the clear.
Again, though, things got really messed up in March 2018. For a scintallating read see Rashes, Rashes, We all fall down….. This same rash began again on my face and proceeded to foremarms, stomach, legs…..my LLMD (let’s loosely use that term at this point!) started me on allergy shots and things blew up again. I was in rash mode almost all of March. It was horrible to say the least. The solution at this time according to my LLMD? was that I have allergies, and I needed to try allergy immunotherapy. I trusted my doctor. After the crazy reaction to the FIRST allergy shot, the vials were diluted, I was given another pack of steroids and sent on my way to find a dermatologist. Needless to say, I stopped the shots and I could not find a dermatologist I could get in to see at this point (all were 3-4 week wait) before the rash cleared up.
Look, I knew I was looking for trouble now in retrospect. Not on purpose though. Again, I trusted my LLMD and thought, Well since I’m out of school for summer, Maybe I can try to do the allergy shots again? See how it goes? Let’s just say that I’m a DUMBASS. And also that I have learned my lesson not to ever trust my doctor who is pushing a side scheme to have my best interest at heart. Granted, I’ve had this rash before, before doing any allergy shots, but it is my belief that the shots set it off again on a course that has been a dreadful one.
I began doing these shots at home a few weeks ago. Yes, they sent the vials home with me. Yes, I was administering these myself every 3 days. Now, after seeing an allergist (who was shocked and dismayed that this was happening!) I realize that this was a really bad plan. But honestly, I had no idea. I administered my 3rd shot on Tuesday, June 19th. By Saturday evening, I had one red streak under my left eye. I hoped I was wrong, but withing 24 hours, my entire face was swollen, itchy, my eyes were so swollen, the tops of my hands were itching and the rash was moving up my forearms. The Monster Rash was back!
I arrived Monday morning at my doctor’s office as soon as they opened. After telling my tale of the sequence of events, LLMD? stated that in fact, it could not be a reaction to the allergy shots because there was no way I could/would have a reaction 3-4 days after the injection (again, the allergist didn’t seem convinced). I have no idea. I am not a doctor. I recieved a steroid shot along with a 5 day pack of steroids. I was referred to a dermatoligist – again.
While the steroid shot helped my face a bit, I was beyond miserable. The itching continued to spread. I now had spots on my neck, my shoulders, and my ankles. I saw the dermatoligist I was referred to the very next day. She had no idea why I was there. I just assumed since my LLMD? had sent me to her that communication had taken place, but no. I explained about Lyme, FMS, CFS, about the history of this rash, blah, blah, blah. She looked me over. She said maybe atopical excema? But it isn’t all of the time? Maybe contact dermatitis? But again, no new products? Maybe allergies, but still a strange deal? She told me that I am a complex case. Thanks?!
Dermatologist Diagnosis: I DON’T KNOW. COME BACK IN 2 weeks or 2 months…..!!!??? I was prescribed a much higher dose of steroids for 14 days and prescribed steroid cream for both my face and body.
In the meantime, I had been in contact with my integrative doctor who is located about 4 hours out of town. It was suggested I add a few natural histmine blockers and see an allergist for possible food allergy testing. The days passed, and I was in utter misery. Trying not to itch, trying to have a minute of comfort, trying to figure out what the hell is going on with me? The mega steroids were maybe helping – no new spots – but they also were tearing up my stomach. I kept at it. I finally saw an allergist last Friday.
While the allergist is nice enough, and I am glad to add another decent doctor to my “team”, I honestly don’t know that I am any nearer to figuring out what is causing this rash each time it decides to rear its very ugly head. The allergist also had to have my history, with Lyme becoming a focal point and one for interrogation. That’s never a fun time.
Allergist Diagnosis: Contact dermatitis. Get rid of all products with perfumes. Perfumes and fragrances are what cause 99% of contact dermatitis cases. But doc, I ask, if contact dermatitis then why/how is it all over my face and then also on my legs and arms and…..? Well, doc says, if you are really extra sensitive, it could possibly be spreading without contact at this point. Oh, like a reaction to the orginal spot? Yes? Maybe? I had so many questions but the allergist was done. I was diagnosed and sent off to change out all of my products, to take even more doses of steroids and not much else. Follow-up is in a month assuming no new rash occurs. If it comes back sooner, I go in and we begin allergy testing…….Not sure why we are waiting but……
I would like to say here that I am not trying to discredit any doctors nor say that I know more that they. Obviously, I don’t AT ALL!!! I believe deep down that each doctor is trying to do his or her best. But as a patient with complex and chronic diseases, sometimes I feel like I am just pushed along. I’m sure all of you have felt this before. It sucks.
**And hey, if you are still reading – THANK YOU! I promise, my tirade is almost concluded. 🙂
So here I am, day 11 of The Monster Rash (Season 2, episode 6). The steroids are kicking my ass….more like my stomach and my mood. My face is back to normal (win!) and many of the spots are almost gone. I still have a few places where it itches, mostly in the evenings and early mornings. I’m in the process of changing out all products I use that have fragrances and/or perfumes. The big ones are easy like soap, shampoo, laundry soap. But now I keep running into things like hairspray, dishsoap, shaving cream! It’s all a matter of deducing which possible products might have an ingredient I might be allergic to….OMG. It’s all very overwhelming. And all this ASSUMES it is actually contact dermatitis and not something else.
I see my integrative medicine doctor at the end of July. I wish this doctor was closer. Since being in treatment for Lyme, etc. my IM doctor has helped me the most. She’s never actually seen me with the rash during a visit, but she is leaning towards a possible food allergy and/or Mast Cell Activation Syndrome.
I’m going to do what I can on my end. This includes no allergy shots anymore from my LLMD. It also includes my not putting too much faith into this particular doctor anymore. It is what it is. I doubt I will go back to the dermatoligist again. What would be the point? IDK. I’ll stick to the allergist and see what my IM doctor might have to say about all of this when the times comes.
And of course, I’ll be keeping my fingers crossed The Monster Rash does not return once I finish up the steroids by the end of this week. Please, just no. It’s been exciting and frustrating enough for the time being.
Thanks for listening! I hope that you and yours have a safe and wonderful Independence Day! – b
Hi my people. I know, it’s been a minute. I’d like to say “Oh, hey! I’ve been feeling SO much better that I am off having mad adventures!” but that isn’t the reason for my absence. Unfortunately. However, it isn’t because I’ve been so bad either. The honest truth is that, well, I’ve been doing my best to finish up the school year and cross the finish line for 2017-2018. And here I am!
Lately, the muddled brain is back. I guess it is brain fog, but it feels different than when I first was sick. Back then, my brain didn’t and wouldn’t work at all. It was a struggle to read even and that was despairing. I couldn’t form thoughts, my short term memory was null, and trying to say basic words? No way. It was frustrating and scary all at the same time.
Slowly, and I mean soooooo slowly, my mental skills have been improving. Reading has become easier, although I still struggle with longer texts, and I have started to join conversations again without fear of completely forgetting my train of thought.
But, recently, maybe in the past 6-8 weeks, things have started to sneak in and/or get worse when it comes to brain function. It’s worrisome. Yet, I wouldn’t describe it as “fog.” At this point, it’s more a jumbling of thoughts in my brain that I can’t sort out. I concentrate and try to spread the thoughts out or I try to separate them into like categories, but I just cannot.
It’s more lik I have 50 thoughts going on in my head and when I try to follow one thought logically and progressively, I just cannot. So the thoughts spin and spin and then maybe, if I am lucky, they just hit a wall and stop for a bit. However, none of this is helpful when trying to actually do something that takes any concentration, say like, Problem-Solving. OMG. And it is frustrating becuase behind all of the basic shallow ideas and thoughts I am able to have and to follow to get me through the day to day, I know there are more in-depth things going on in this brain of mine that are just inaccessible.
But otherwise today, I just want to say HI and get back to it with you. I hope your all is going well. I hope you have had some, I mean many, joyful moments. – belle
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.
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.
I’ve got the Holiday, er, I mean Christmas, I mean Holiday tunes on right now. They’ve been on for hours now. I was really hoping it would cheer me up and make me happy but I guess it isn’t that easy. For this past few days I’ve been feeling out of sorts. I’m pretty sure I know why but i just don’t like to admit it.
It could be all the mess going on in our govenrment right now. I can’t seem to find a balance between apathetic and activist. At least in my brain. There is so much to try to process, so much that is wrong, so much just plain meaness, racism, etc., it’s overwhelming. I keep taking off the Twitter app on my phone, then readding it. On, off, on, off. I try to keep up with the news, but again, it feels like we are getting bombarded from all sides with just MESS. That may in fact be the strategy. To silence people through deliberate chaos. Who knows. But it’s all been demoralizing. For a year now….no, longer.
It could be that we’re in between holidays right now and close to the first day of Winter. Don’t get me wrong, I like the holidays, especially all of the time off to enjoy, and Thanksgiving this year was awesome. But it’s dark when I leave for work and by the time I get home, the shadows are beginning to close in. Living here in Southeast Texas we certainly aren;t starved for sunshine, but I think the short days are affecting me.
And of course there was the rash on my face. It’s clearing up now but it’s just a constant reminder that Lyme is still around. It has more power that I want to give it credit for, and I don’t like the lack of control. You would think after so many years of this shadow companion I would be more accepting and humble. Well, not so much.
And on that note, Lyme disease is the bottom line instigator of this feeling-out-of-sorts mood. I’ve been reminded by the rash, by the increasing joint pain, by the headaches and periodic nausea that indeed it is an illusion to think that I’m a regular person. “Ha ha” laughs Lyme right in my face. HA HA! And while I am grateful that I have had a couple weeks where I only had to deal with Lyme symptoms minimally (they never go away comepletely), I still don’t appreciate the false feeling of “being better.” I get it, but I don’t have to like it.
I’m trying really hard today to shift my focus and not dwell on the fact that I’ve been sick for all of my 40s. That I’ve been treating for 5 years, that I’m still testing positive for this damn disease, that I am still SICK. That the medical community seems clueless in the face of this epidemic and that so many are suffering. That I feel sick today, like a hangover but I haven’t had a drink in months. I could go on but I’m sure you are over my whining by now! Thanks for humoring me!
I think I am going to do my best today to put the Holiday back into Happy Holidays. Wish me luck, friends. The road is a hard going and a dark one right now.
First, before I start on my rant, I hope you all had a wonderful Thanksgiving! We had a really good day. The weather was AMAZING. No humidity (say what?!?) and the high was maybe 60? Delish. It was just my mom and me and our 10-12 dogs between us. We cooked, talked, cooked, and talked. It was great to reconnect. My husband and step-daughter arrived home from out of state about 4 p.m. and then we got to visit with them and hear about their trip. I hope you and yours had as much joy as we did!
Now, the RASH. Since contracting Lyme (when this happened I have no idea but….), I have had strange rashes. On my legs. On my arms. On my hands. On my face. I had a bout with hives this past summer. I never really figured out why. It’s been since July 2016 that I’ve had a legit rash. And it was very unpleasant. It was under my left eye across my cheek. It was down the left side of my face and under my chin,
It itched so horribly!! My doctor sent me to a dermatologist (since I had just had this rash in April 2016, same place). The dermatologist tested me for skin Lupus and sent me on my way. The test was negative. She gave me some cream which helped the itching but whatever. It lasted about 10 days.
My out of town LLMD looked at pictures a few months later and stated it was systemic and not caused by anything external, aka Lyme disease. Or maybe a virus that caught me because my immune system is just plain no bueno.
Anyhoo. It’s back. Same rash but it’s under my right eye and on my right eyelid. It itches something fierce, and I am trying my hardest not to itch it! It is miserable! It popped up Friday night and has just spread a bit. It looks like my eye is swollen. Nice. I’ve been babying it and keeping it contained by not touching it (ok, barely!). And, I’m back at work tomorrow! Yippee!!
Look, the last few times it has been much worse, but still. My plan is to go to work as it isn’t contagious (we figured this out the past 2 times as well) and hope that it clears up asap. If my eye gets worse or the area gets more swollen, I may have to take a day off, but I am really trying not to do that if at all possible.
I’ll be honest, the rashes on my face just make me so anxious. Not because of what it looks like but it’s just a constant reminder that Lyme is still lurking. Lyme is still beneath the surface just waiting for any chink in the defense. It’s a reminder that even though I’ve made progress, I still have miles to go. UGH.
Wish me luck with this. Have a good week, friends. Be happy. – b
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.
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:
the additional thyroid medication she put me on in May,
being off of work (I had all of June, July and half of August off completely),
and maybe the combo therapy of antibiotics ahe put me on in June.
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.
Peace to you, friends. Until next time xxoo – Belle