#LivingwithLyme
Lyme goes back to work… See how that’s going!
Hi out there! I wrestled with writing two paragraphs about how work is going and then, bam, they were gone. Since I cant muster anymore energy, it will have to wait. Maybe the disappearing text is reflective of my segue back into work? LOL
More to come on how work is going. Right now my Lyme brain cannot do anymore, so I bid you all a goodnight. Peace, my peeps – B
Into the mystic
When I feel really horrible, a migraine, nauseated, joint pain, and it is difficult to be here in the “present”, I escape if at all possible into my mind, into my memories. Usually, it is a worthwhile distraction.
When I was a child, my family and I lived in Upstate New York. My parents married young, my mom 19 and my dad was 21 or 22? My father became a high school Physics teacher in a rural New York township and my mom stayed home with us, me, then my two brothers. I think I was a little over a year old when they bought a very old farmhouse. Located on a mountain and accessed by a dirt road, we were isolated as the only family in that area to stay year round. There were other homes up in that area, although one could not see them from our house, but these other places were weekend retreats for New Yorkers who lived in the City. We lived in this house and in this area until I was 12. Most of the memories I like to escape to are from this time period.
Sometimes, when I feel so horrible I like to think about the snow. Yes, of course I romanticize it; I wasn’t the one trying to keep the house heated, or the one trying to get to work. For me, snow was always awesome and amazing. One of the best feelings ever is being outside in the deep, deep cold, the silent, penetrating cold, breathing hot air into the ski mask you have on because breathing in the cold air hurts your lungs. It’s the simultaneousness of breathing in the bitter chill, burning your lungs and nose hairs alike, then breathing out the hot, the hotness of your breath that turns to steam that rises on your cheeks and into your nose.
So snow. After the storm rides through, it becomes an irresistible and impenetrable quiet. All I can hear is the crunching of my moon boots through the crusty topping of the snowdrifts. If I stand for a minute, the silence itself is almost a sound. Some describe it as a blanket, the snow, but more so and for me, snow is a buffer from the outside world. Out in the wintery landscape, one feels enveloped and safe, encapsulated in the moment. Nothing breaks the eloquent silence and you don’t want it to ever end. The closeness. The buffer. The insurmountable quiet.
It’s cold but I am wearing a snowmobile suit. It takes forever to dress this 6 year- old ragamuffin. First, gloves, hat, scarf. Then legs of the suit and slide into the snow boots. Now, arms in, make sure the gloves are tucked into sleeves (this is why we put gloves on first), then zip up. OH. Make sure to go to the bathroom before dressing for outside. We never had ear muffs. Always a ski hat pulled down over the ears and maybe another scarf wrapped around the ears and the nose/mouth.
Heading out into that stillness, that world of endless white, hours of pure fun and exercise awaited us. One time, a blizzard came through at Easter. It blew hard and the drifts were monstrous. When it finally subsided, my brother Brad and I headed out to the side yard along the rock wall. The drifts were utterly amazing. We started digging. The snow was perfect. The outside of the drift was caked together and solid. It held fast as we tunneled into the pillowy insides. We worked for quite a while, scooping and moving snow. Finally, we could both sit inside. We laughed at our good fortune and our lovely handiwork. Our little hangout held fast for several days until it started to warm up a bit and began to melt.
Our faces burn red from the frosty air. When we get inside next to the warm fire that reaches into our muscles and works into our bones in a way like nothing else, our mom will put Bag Balm on our rosy cheeks and our noses so they wouldn’t chafe. We’ll be exceptionally tired out. The kind of tired that feels good though, you know? While we unthaw, we put up our suits, shake off our boots, put everything by the stove so it will dry out. Once warm, we can barely keep our eyes open to eat even though we are starving. We drift off to sleep into one of the very best night’s rest we’ll ever have again.
Peace out there today – Belle
TGIF! Wow. What a week. I really hope yours was better than mine. As I have mentioned in some of my previous posts Turbulence of Lyme Symptoms, Fire in the Hole, and Derailed, there is a lot of inconsistency in how Lyme will manifest itself each and every day. There are some things, in my case, that stay pretty constant such as daily headaches, joint pain, and fatigue. But then there are those other issues that crop up from time to time, I guess maybe they are flares?, and it is impossible to prepare. What’s the saying, the devil is in the details?
And so last Sunday, I started having severe nausea. It lasted the entire day. I couldn’t eat, sleep or do anything. I just laid in bed, trying not to move around. The moving made the nausea worse. Indeed, it was a day where I just wished I could get out of my body for even like 10 minutes to get some relief. I chalked it up to eating some jalapeno sausage that morning; I knew I shouldn’t have eaten it but it was delish but soooo not worth it.
Unfortunately, no. The illicit sausage was not the problem. On Monday, when I tried to get up to get myself ready for work, I felt really nauseated. Then, the headache joined in. There was no way I could make it to work, let alone teach all day. Monday and Tuesday were more of the same. In the meantime, I was trying desperately to get into my Lyme doctor (LLMD) but there were no appointments available- for the entire week. Whaa? They were very clear that they could NOT fit me in even if I came in when they opened and waited. When I explained again my symptoms, the front desk told me that a nurse would return my call that afternoon. That was Tuesday. By Wednesday evening, no one had called me. Although I was able to get up and go to work on Wednesday, by that afternoon the nausea was back rearing its ugly head. Now, please do not think that I have an entitlement issue. I realize doctors are extremely busy and overbooked. I realize that there are other patients out there who also need to get in for a visit.
On the flip side though, this is my doctor who is treating me for Lyme disease. I can’t just go “anywhere” to get treatment. Other doctors, and almost all here in the South, are not trained on Lyme nor do they actually believe it exists here in Texas. This is the state of the medical options we have for Lyme here and in way too many other places in the US. In fact, Lyme is endemic to Texas. Check out this research done by Texas A & M University “Lyme Endemic to Texas.” Thus, going to another doctor is really more of a waste of time than anything. The ER was an option if I started having other issues, but mostly it was the severe nausea that was the new thing. All of my other symptoms are dealt with in the daily grind; they ebb and flow. But the nausea. God, it was (is) the worst.
It feels like I need to throw up (sorry TMI!) but I can’t. That kind of nausea. No vomiting though. I tried to stay very hydrated. I tried eating Saltines off and on. Yet, about 30 minutes after eating or drinking tea or Sprite, hello tummy monster! Anyway, I emailed my doctor, and I was able to get in yesterday afternoon. Supposedly, I have a virus. I say supposedly because honestly, I think it is more Lyme related than anything else. But I took what I could get which at this point was to get some sort of relief from this symptom. I was prescribed Tamiflu and anti-nausea meds and told to come back next week if it was still going on. Today was better because of the anti-nausea meds, but I’m still having experiencing the nausea.
This is how the Lyme bacteria works. It is a very stealthy and intelligent. According to Lymedisease.org, “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. If not treated as soon as infected, then the chances of it reproducing and getting into every system of one’s body is extremely probable. Now granted, not everything can be attributed to Lyme. But for me, most of the time, my symptoms are directly related to Lyme disease.
Again, I hope you all had a much better weekly journey than I did. Take care – B
Lyme disease affects each person in a variety of ways. It manifests itself differently and thus, this makes it even harder to diagnose correctly and treat correctly. Lyme disease is frequently called the great imitator. In many cases, Lyme is misdiagnosed as Lupus, MS, CFS, and FMS, along with several other illnesses.
For me, when I was so very sick, some of my more prevalent symptoms included neck pain, daily headaches, severe fatigue, joint pain, sleep disturbances, lower back pain, and nausea. I also had severe brain fog, memory issues, and neuropathy in both feet ranging up to my knees. During the course of treatment, some of these symptoms have subsided. But there sometimes are symptoms that I never had that will just randomly crop up. And I’m like, hey what’s up? Where have you been all of my life? Not.
Joint pain seems to migrate around. While my right hip was constantly in pain for, well, I don’t know, maybe the first year before and then after diagnosis? But then, for awhile in the spring of 2014 my right wrist would hurt off and on. It continued like that for about 3 months and then, bam, it was gone. My ankles sometimes will ache so badly. I bought these crazy ankle wraps at CVS. The inserts can be heated then you wrap the big, chunky, bright blue wraps around each ankle. It helps but there’s no way to wear these at work. Anyway, surely the fashion policy would stop me! I’ve taken to keeping several sizes of the analgesic patches everywhere. These work for the short term so at least they provide a bit of relief. I’ve never had knee issues which is interesting as this seems to be a classic symptom of people with Lyme or so the CDC says.
And then lately, my left elbow and now forearm is hurting. It started in my elbow in early November. It’s an achy and sore kind of pain. I figured it would be gone by now, but it actually these past few days seems to be getting worse. The pain is now also in my forearm. Heat helps. I’m not even left-handed. I’ve been putting off dealing with it; however, it is really is hurting almost constantly now. When I see my doctor next week, hopefully, she can help me out. Or at the very least rule out other possibilities besides Lyme.
It’s always a big surprise with Lyme! Never a dull moment! At least the daily hip pain, and the neck pain is pretty much gone now. I’m just glad that not everything hurts at the same time. When that happens, life just plain out sucks.
I hope everyone is having a good weekend, and I hope all my peeps up North are safe, snug, and warm. Cheers -b
Trying to get through this….
Hello people, it’s been a long while. And as we all say, so much has happened and yet nothing at all has happened. First, maybe, is that indeed, I have made it to Thanksgiving break at work. This is a huge hurdle for me, and I am very grateful to have cleared it, circa 2015, with all limbs intact. There were about 3 weeks there in late September that I honestly thought I would not be able to make it, and I would have to take a medical leave; I was really worried that I was getting worse. Then, things turned around, albeit slowly. I’ve finally come to terms with the fact that living with a chronic disease, things can change on a dime and they do. Although I am not a fan of this at all, accepting this as a reality has been somewhat helpful along my journey into the unknown.
Seeing another doctor has also happened. We made a 3-4 hour trip from home to the new doctor’s office a few weeks ago. The visit was a long one in which I talked too much, my husband reported to me afterwards, and we left with a few bottles of tinctures. Personally, I like this doctor, the approach to treating Lyme through more integrated and functional medicine, the way the doctor listened and validated mine and my husband’s experiences over the past 2 and a half years of treatment. I have stopped the abx and switched over to the herbal drops. The goal is to get to 25 drops 2 times daily. Right now, I’m struggling with 5 drops 2 times a day. I can do 4 and make it alright. But the past couple of days when I tried to get to the level 5, by about 4 p.m. I am herxing big time. I also have detox drops for the herxing, and I have added those as needed, but wow, there is s distinct difference, at least for my body, between the 4 – 5 drops. We are working on it. 🙂
I hope everyone has a wonderful Thanksgiving! This break I’ve been able to do a few things I normally can’t / don’t do while working such as, and don’t laugh: grocery shopping, house cleaning, pie baking, dinner out, laundry – lots! While most of these things are not huge in any way, I have just not had the energy to do them much while working. And I actually did some simple Christmas decorating! It really has been pretty awesome getting to do these things without feeling so fatigued and overwhelmed. While several of these afternoons and evenings I have been in bed with nausea and headaches, I still feel like I’ve had some of the best days I’ve had in a very long time. I know I have pushed myself a little much, and I’ve eaten several slices of pie, pumpkin and apple, so my sugar intake is in the red, but it’s all been worth it! I feel like I have been partying it up, people!
Best wishes to you and to yours, -B
P.S. The above band is worth checking out. This song, “Fleeting One” is stuck in my head. Enjoy!
Hello out there! I apologize for being gone for so long.
I had a bit of a scare though, and it has been a struggle to get back on track. So I caught a cold at the end of March. It was the 3rd one I have had this year; the immune system is shot and I am a teacher. The odds were not in my favor. Also, it was a stressful time of year, state testing, and I guess all of this made for the perfect storm.
On a Monday, I got up like I normally do. I had coffee and started to get ready for work. About 30 minutes later, I started feeling really dizzy and nauseous. It was terrible. My head started pounding, and I had to lay down. I could not go to work like that.I spent the entire day in bed, fluctuating between sleep and pain and nausea. The next day, the same scenario played out. Wednesday I went to my LLMD. She tested me for h pylori, EBV, and Mycoplasma. She told me to rest through the weekend.
I will tell you, this was a scary experience for me. With all of the symptoms I have encountered with my travels with Lyme, I have been able to manage them to a degree. But the dizziness? This was new and something I definitely could not control. I was out of work a week. I have never missed that much school, even when I got married. It made me start thinking about all kinds of crazy (yet possible) scenarios. I tried to figure out a Plan B,C, and D. None of those plans look too great. We need two salaries. I most likely cannot qualify for any disability as I have been working. I have been trying to save monies for an “emergency” in which I might use up all of my sick days and still need time off. But what if there is a point where I really cannot work? I don’t have an answer for this.
After all of my labs came back, it really wasn’t clear why I was feeling so terrible. By the end of the weekend, I was on the mend, but again, there really was no clear answer to why I felt the way I did at all. In my own medical experience …ah,hmm, I am guessing that my body was just done. The cold knocked me down and then along with the stress and the Lyme and Mycoplasma, I just didn’t have a shot.
Since that incident, I have been feeling a tad better. Less overall pain, more mental clarity than I have had in quite sometime and less fatigue. Go figure.I had 2 full weeks of feeling almost normal and now, the headaches and the joint pain is creeping back in. Anyway, I hope this finds you pain free. Take care! Peace -B #lymediseasechallenge
Well, ladies and gents, it’s been a nightmare of a ride these past 10 days. Ironically, my last post was discussing the sometimes, most times, sporadic onset of symptoms. Then, tada! Totally happened to me. And the worst. I hadn’t been feeling all that great over Easter. I was having tummy issues, nausea, indigestion. And headaches. Really painful headaches. I missed a family member’s birthday celebration along with Easter since I was basically incapacitated.
Then it was Monday. And all hell broke loose. I got up and started getting ready as usual. About 25 minutes into my routine I began getting dizzy, lightheaded, and severely nauseated. Just like that. I laid on the bed for a minute, panting and hoping I wouldn’t throw up. I couldn’t go to work like this. No way, no how. I spent the entire day in bed miserable. I couldn’t eat. My stomach kept cramping and then the migraine made its appearance. Tuesday was yet an instant replay of Monday. No fever, but I could not stay upright. I have never felt this horrible before.
Wednesday I already had an appointment with my LLMD set. My mom had to drive me. I was afraid of a dizzy spell or whatever might show up next. I’d like to say my doc had all the answers. I wanted Doc to tell me that I could do *this and I would be OK. Alas, as it always is with Lyme and Company, not so much. My EBV is reactive and has been since January. I have a mycoplasma pnuemonia infection. I have one MTHFR mutation. I also now may have an hpylori bacterial infection which I am being tested for. My body is on the fritz. Overloaded by fighting on so many fronts at once, I don’t know, maybe my immune system has just given up. I was to stop my antibiotics, and I was directed to bed rest for the next 2 days through the weekend, returning to work Monday. Oiy. I told Doc that this is the worst I have felt since beginning treatment 2 years ago. Definitely scary and disconcerting. The rest of Wednesday was a replay of Monday and Tuesday. I swear, I haven’t slept so much in my life.
So here I am, resting. The nausea let up finally yesterday. I was able to eat a decent meal as well. Headaches are manageable. I feel like at least half a person now. Missing this much work had been distressing though. It worries me and while I want to plan for the future, what do I plan for? Right now, I plan for the Worst Case Scenario: I can’t work. Realizing many of my fellow Lyme sufferers are already in this boat, I am extremely grateful that I can still work and that I can manage these incidents for now.
While I am waiting to get my labwork back, Doc tested me again for EBV, mycoplasma, hpylori, thyroid (I have Hashimoto’s) along with ATP, CD57 and Lyme, I am wracking my brain about what I can change on my side to make things better. I definitely need to detox better and more. I think it is time to make a serious diet change. And most importantly, I need to embrace the fact that I am chronically ill and start working with what I gots. As the Indigo Girls sing, “What makes me think I could start clean slated, the hardest to learn was the least complicated…”
*you know, a pill, a diet, a one stop shop cure
P.S. My pretties, please do not forget about www.lymediseasechallenge.org and check out Dr. Oz and his segment about The Lyme Disease Challenge! #lymediseasechallenge
I hope it is a pain free day – B
