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.
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! 🙂
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!
I can’t proclaim that I am actually branching out but I am venturing into some possible video options to add to this blog. I’ve never done this at all so thanks for trying it out with me! It’s something I’ve wanted to experiment with for awhile now, but honestly, I was too scared to do it. For lots of reasons. But watching my husband use Snapchat and Instagram all the time, I figured, “why not?”
I hope my first video isn’t too horrible. I know I need serious practice with this medium. I hope your Sunday is going well, and thanks for checking out my first video and my YouTube Channel! Take care, friends!
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……
Running from the RASH!
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.
Howdy Friends! It’s been awhile, I know. This year has been off to a kinda crazy start. In order not to bore you, I’ve put things into bullet points:
My husband had the flu over Christmas break. It lasted about 10-12 days. I tried to make sure he was as comfortable as possible. I also tried to be very patient. He recovered in time for New Year’s.
School started back up, and it’s always a challenge and stressful after a longer break. I mean no one wants vacation time to end!
We offered to house our 22 year old nephew who was in-between homelessness and rehab. He stayed about 4 weeks. It was very stressful and not such a good experience. 😦 But, he did get to rehab and is doing 30 days at least.
Over the MLK weekend, we had freezing temperatures. Then, we had sleet and ice. We had 2 days out of school due to weather. I won’t lie, it was pretty fun to have “snow days!”
I had a severe back pain attack the same week. I ended up taking 2 days off of work because I could barely move. It was awful. My doctor says it is degenerative disc dsease. I ended up having another flare just a few weeks after this one. I’ve considered going to a back specialist, but I am so over doctors right now!
Towards the end of January, my husband caught some upper respiratory infection. This lasted about 7 days. Since we are both teachers, it isn’t difficult to catch the latest crud going around at school. And believe me, there’s been a lot of germies circulating this year!
February was a month of Seattle rain and dreariness but in Houston. There was maybe one day that we had some sun? It was seriously depressing. We celebrated my mom’s birthday, but that was about the only fun thing happening!
Spring break just started and my nephew spent 2 days in the hospital with a virus. He is on the mend now.
About 10 days ago, I had a rash start up (again!) on my left eye. It lasted all week and then seemed to go away. But the Saturday, the rash started on the top pf both hands and on my neck. From there, it has popped up on legs and arms. It is so much worse at night. I’ve been downing Benedryl. The last time this happened, my LLMD was clueless (she made me treat for bed bugs which it is so NOT) and the dermatologist said it wasn’t “skin lupus” and sent me on my way. I’m just aiting it out because again – I am so over doctors right now!
The weather has been beautiful! Temps are about 70 and it is sunny outside.
I had a list of a few things to get done during Spring Break and I have about 140 research papers to grade, but right now, I am just going to take it easy. 🙂
So that is a really quick update! I see one of my LLMDs this Friday, but I don’t expect much at all, if I even see her personally. I’m not trying to be bitter but I am just a little. I’m very grateful that I have my holistic LLMD that I see every 4 months, otherwise, I just don’t think I would have made the progress I have this past year.
I hope you and yours are enjoying your days. Best to you.
Hello and Happy New Year! I know I’ve been a bit silent lately, but it isn’t for any particular reason. This winter break is going way too fast. My husband has been battling the flu. It hit him the week of finals and is still hanging on. The doctor said this flu hangs on for sure. I think he’s finally on the mend. My fingers are still crossed that I will indeed NOT get this flu.
We had a great Christmas, very sinple. I hope you and yours had a good day as well! I haven’t been up to much really. Keeping the house clean, puppies fed, husband nursed. All things I am so grateful for as a matter of fact. Being off of work has allowed me to rest and do things I normally just can’t manage to do while working full-time mostly due to fatigue and other symptoms. Goingout to a movie and out to eat are definite treats!
Overall, my health has been steadily alright this semester. I gained some ground over the summer, and I feel like I have managed to keep a grasp on most of that ground. I see my holistic doctor in a few days, and I am curious as to where we go from here. I’m still dealing with afternoon fatigue. My thyroid is not working properly – AGAIN – and a few weeks ago, I started having slight numbness on the lower right side of my face. Nothing that itches or hurts. It just feels like there is pantyhose covering that small area. It is a strange feeling.
Newton and I taking a New Year’s day walk. COLD!
Yes, I told my doctor here (my original LLMD) this information when I saw here last week – oh wait. I didn’t see her; I saw her PA. Now the PA is a very sweet person, but now it has been 6 months since I have seen my primary LLMD. Seriously.
Anyway, I told her about the numbness and she said, “Wow. Yes, I am sure that is annoying.” That was all. I’m still waiting for my labwork to come back and for the doctor to advise me on what is next. Honestly, I don’t expect much. I shouldn’t be irritated. This is one of the many reasons I went and found a secondary holistic LLMD 2 years ago. However, my 2nd doctor is a 3+ hour trip away from home and does not take insurance and so I have 2 doctors – one near, and one far. I count myself extremely lucky for sure as I know many Lyme disease patients who have no access to an LLMD at all.
Thank you for all of your support throughout my humble journey with Chronic Lyme disease thus far. This blog and this space with you, my friends, has been such a wonderful gift. You have listened to me, encouraged me, understood me, and loved me. I couldn’t ask for anything more. From the bottom of my heart, I embrace you and wish you each the best of everything in this beautiful year to come. Here’s to 2018!
With Love and Joy, Belle
LuAnn is all ready for the freezing temperatures we are experiencing here in Houston!
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.
Navigating the nasty mess that is living with chronic illness, keeping in mind the sage wisdom of Lil Wayne ,"Bitch I'm ill not sick," Just out here trying to be the illest.
