I’ve been less focused on writing lately. I can’t quite put my finger on it. Reflecting, I think it is because, well compared to say 2 years ago, I think my health is a bit improved. Honestly, it’s hard to say and hard to measure. But in my mind, and my husband agrees, I am doing better overall. And so, I find that this makes it more difficult to write than when I was much sicker. Weird, right?
I think this is due to my wondering: what can I write about as a semi-sick, semi-healed person that people would actually be interested in reading? If you have any ideas, please let me know!
While so many of my symptoms have all but disappeared, I am still trying to work on insomnia, joint and muscle pain, memory and concentration issues, and fatigue. Sometimes, these wax and wane, although the insomnia issue and the fatigue are cornerstones of this Lyme journey that continue to remind me that I am chronically ill. Oy.
One other issue I am struggling with is actually accepting the fact that I am chronically ill. It was much easier to embrace it and own it when I really felt so very terrible every single day. For years on end. Now that I have some relief, and there are times I can participate in life in ways that haven’t been options for me – again for years – it is much harder to keep in mind that I am in fact, still chronically ill.
My mind likes to play tricks on me, or maybe it is more my body that plays the tricks. An example would be this: I used to have terrible migraines. I had never dealt with anything like this before Lyme disease. The migraines started about 18 months into treatment. And they continued for about 12 months. A good one to 2 a month. Learning to deal with those was only one part of a puzzle I still do not think I have all of the pieces to. And then, they stopped. I haven’t had a migraine for quite awhile. So, one more symptom I don’t have to deal with and I think, hey, I’m ok. I think, I’m so much better off than so many others. I’m making progress. I can’t really say I am chronically ill because, well, I had migraines and now I don’t.
How can I be both better than my worst 3 years ago, or 6 years ago, and yet, still be chronically ill? This is something I am truly trying to figure out for myself. I don’t have an answer. I savor the minutes and sometimes hours I feel better, and I survive through the ones when I don’t.
I hope all of you are doing well and that Thanksgiving was good to you and to yours. Take care. – B
When summer started, I needed a couple of weeks to decompress. I was wiped out completely by the very last day of work – teacher workday. My brain was not working well at all, and I was having some medium to severe lower back pain and right hip pain. As I walked out of our campus doors on May 31st, I wasn’t sure what the summer would hold for me healthwise.
I had 2 goals for this summer: get off of the sleep meds I’ve been taking for several years and to try and add some exercise to my daily routine. I stopped taking the sleep medication immediately. I’m not going to lie, it was really tough the first week or so. I would go to sleep and then I would keep waking up almost every half hour to hour most of the night. I almost caved in before things started looking up.
My sleep had not been improving on the sleep medication this spring at all. In fact, insomnia is now one of the lingering symptoms I am dealing with as far as the chronic Lyme is concerned. I spoke to my in-town doctor about this at my June visit, but remember, she takes insurance and if I am lucky, I get about 8-10 minutes with her. It is impossible to discuss much in that short of a time frame. And at this appointment, I wanted to focus on the deep hip pain I’ve been having since February so that was the topic of our brief visit. Let’s just say she didn’t help me with that either and leave it at that.
I really wanted to use the summer to try and get a regular, good sleep pattern back if at all possible. So I endured. I haven’t taken a Lunesta since June 1st. I do take time released melatonin and Valerian Root before bed and a supplement of DIM my out-of-town doctor suggested. I’m not saying I haven’t had some tough nights. I have. But overall, I’ve been pretty happy with the results of stopping the medication. While I still wake up a few times every night, I’m able to get back to sleep most of the time.
I’m sincerely not sure what I will do if, once back at work, I can’t sleep well. Not sleeping well for weeks and/or months at a time is just so horrible for me on so many levels (for anyone really!), that I will probably have to go back to Lunesta or ask my doctor for a different sleep med if that happens. I won’t make it if I can’t sleep. I am sincerely keeping my fingers crossed that I can maintain my sleep naturally!
My other goal this summer was to add a bit of exercise if possible. Before Lyme, I liked to walk 2 miles a day and do yoga. I always had a strong energy level so I could do these before school or after school. But these past 6 years, I just have not had the energy to do anything. Even just working has been a serious challenge for me. When summer started, I added 30 minutes 5xs a week on the elliptical machine I’ve had sitting around for years LOL. Oh dear God, the first 2 weeks were not fun, my friends. Wow. I knew I was out of shape but DAMN! But I have been able to continue this workout 5xs a week all summer! I am so happy about this! I want to be optimistic and say that yes, I will continue once I head back to work August 12th, but I just don’t know. I need to be realistic. Look, I am going to try. That’s all I can do.
To be honest, I haven’t done a lot this summer. We went to the river 3-4 times this summer which is always great but otherwise, I just did some cleaning at home and enjoyed the time off. Oh, plus a few doctor visits! My hip has been killing me so I am trying to figure that out. That’s for another post though.
I hope you and yours are having a good summer! Take care – B
Yep. Summer has arrived. I’m on break, and I’m trying to make the most of it.
I promise to do a longer post soon. But I just wanted to check in and say hello! I hope your summer is of to a great start. So far, mine’s been good. I’ve had a few doctor appointments and a visit to one of my previous hometowns to visit family and friends.
We don’t have massive plans and that is totally fine with me! My husband will be taking a trio to Colorado with his parents soon. I’ll stay home though to take care of our numerous dogs. There’s just too many for anybody to handle and so it is what it is. I’m a little bummed but also traveling can be tough on me so it may be a blessing in disguise.
I’ll get you caught up on the latest of my Lyme journey ASAP. Again, I hope you are well. Take care, – b
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 diagnoses of Lyme disease comes along each year, I get a little freaked out.
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.
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
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.
It’s 9:20 p.m. and lots of thundering going on. Not much else though. If we get rain, that would be awesome. It rained all day on the 4th which is unheard of for the most part here in this area of Texas. We were grateful then. If we get more tonight then, boy, howdy!
The summer seems to be speeding right along and while I’ve learned over the years, unwillingly I might add, not to have nor to set any crazy goals for summer break, I do it anyway in the way back of my mind. I know I’ll be disappointed because well, chronic illness. All the magical thinking I conjure doesn’t change the facts that there is much I just can’t do anymore or I can’t do for any extended period. Ugh.
I wanted to start adding some exercise. Maybe yoga. I used to get up early before work years ago and do a 35 minute yoga session daily. I loved it. But that’s way too much right now. I got a yoga stretch DVD. I’ve done it a few times but nowhere near what I thought I would/could.
I need to work on school stuff but every time I sit down to do it, I just can’t stay focused. I reset but it only helps for a bit and then- what was I doing?
The more time goes by, the more I realize what I haven’t done, what I haven’t accomplished, what I haven’t produced. It’s all just expectations I’ve put on myself. I know this fact, but I still feel unsettled about not doing more with my time off.
But it’s been good to be off of work. I can rest when I need to. I can do basic chores. I can cook. I can clean. We’ve gone to the lake a couple times-just for a few hours- as the heat is killer for me. I’ve also been reading a lot. Picking up reading again, longer pieces, has been a true joy. I lost the concentration skills when Lyme showed up, and during my first 4 years of treatment I was so sick I just couldn’t manage it well at all. I have like 10 ebooks checked out from the library and several others on hold. I’m very happy about being able to read longer texts again!
Well, the thunder has moved out of here with nothing to show for all of the drama. I guess it’s just a heat storm.
I’m going to try to get some sleep. Happy dreams, friends. xoxo – B
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!
This same rash began again on my face and proceeded to foremarms, stomach, legs…
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
