A Forced Break

Maybe a herx?

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Today has been a tough one symptom-wise. Since we are on break, the last few weeks have been pretty sweet. I can rest when I need to so this helps immensely. But today. Oiy.

I’ve had overall soreness since I awoke at 5 a.m. My lower back, hips, right knee, and ankles have been aching. I canceled an appointment today because, well, yeah, I wasn’t making it. The bed has been my constant companion today along with 2 heating pads and some medication. Oh and some loyal puppies. Maybe I’m herxing. Its been a week or so since I’ve had one. IDK.

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Chino
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Pico
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Boo aka Bipity Bobity Boo Boo!

But tomorrow is a new day. The quote above just spoke to me in all the right ways. I hope all is golden in your neck of the woods. Peace, friends -B
P.S. Pups in a row from top: Chino, Pico, Boo Boo. 😍

Warm, Warm, Cold!

It was 80 degrees here yesterday, a/c on, hair frizzies and such abounded. Today? Why, it is 46 degrees! Getting up was tough. It was a 3 hour process. We woke up at 5 a.m. Hub’s alarm went off; he was taking the kids to an outside event today. I had to give one of my dog’s his medicine. I switched the a/c to heat and then jumped back into bed and turned on the electric blanket. AAH. But lights were on, and activity was happening, the dogs were restless. Almost falling back to sleep, Boo woke me up trying to play. About 6 a.m., I gave in and got up, made coffee, crawled back into bed and watched a little Netflix with the free tv juice (satellite) until 8 a.m. I just couldn’t coax myself out of the cozy, warm bed.

Everything is sore for the most part. It’s the damp that is getting me. When the front came in last night it rained, the damp sleathly crept into the stillness of my bones. Hips, lower back, ankles….these are the places the cold likes to settle. My BFF in the winter is a heating pad. I seriously have about 5 of them pretty much everywhere! School, couch, bed, office chair. I really need to get a heated car seat! Maybe Santa can check that out for me.

It’s been a good week. I’ve done more this week than I have in the past 2 months, or at least it feels that way. For the most part, my energy has been decent, and my mood has been a positive one. One thing I have realized this break is that I’ve become overly cautious. What I mean is this: I never know how I will feel after doing something out of the ordinary in my daily routine, whether that is an extra hour at work, taking on a project, going out to dinner, etc. With this in mind, I go about my every day doing the known routine and scared to do anything outside of this routine because I don’t know what the result will be. I know this sounds a little crazy, and it kind of is, but my worry is that if I break my regular routine and overdo, I may be paying for it longer that I want to or can afford to financially and otherwise. So, I err on the side of doing less.

The result of playing it ultra safe has been that I have sacrificed some of myself and my relationships with others. It is true. And this does hurt. It’s just really hard to figure out a balance as far as my energy tank  is concerned so there isn’t a terrible backlash. I’m not sure how to navigate this new found obstacle I am now aware of.

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In perspective though, I am grateful that I have energy to worry about doling out.  This is a definite sign of improvement and I’ll take it. Any tricks or tips you can share about managing your energy account?

I hope you all have had a good, pain free week. Until next time, stay frosty – B

Two Steps Back…

Hey all you people! I haven’t been in touch lately. School started back, and it has been a whirlwind ever since. Mostly, I come home and lay in bed to rest. I rest on the weekends so I can work through the week. Or at least try to. I’ve been off of antibiotics for almost 7 weeks now. At first, there  wasn’t a considerably difference. After a few weeks, the headaches became less and the nausea was a lot less. Otherwise, things were not better or worse. But then, the first week in September, I caught a cold. My husband was in bed for three days over Labor Day weekend; I stayed as far away from him as possible! But so many people were sick at school, it was impossible to stay away from the germs.

So it got me. I held on, and I really thought I was winning the battle. But since then, things have gone south. My energy level is nil. I have a recurring sore throat on the right side and I have issues going on with my sinus. I’ll spare you the gory details but suffice to say, my sinuses are full. I can breathe through my nose most of the time, but there is stuff way up in there that comes out in the morning and evening through coughing. The body aches and the back pain are back. No appetite really. I’m guessing that the EBV is active again and maybe the Mycoplasma pneumonia load is high again. Depressing? A, just a little.

Walking forward.
Walking forward.

Heading to my LLMD tomorrow. While I look forward to going, I know I will walk away disappointed. Labwork takes a week, and then it is a VM recording from the doctor about the lab numbers and what is next for treatment. Nothing seems to change much. No matter what, I am guessing my doctor will end up putting me back on some antibiotics, and we move sideways? It hasn’t been a move forward in ahile by my account. While the summer was nice because I could rest as needed, I feel as though I haven’t made much progress in terms of my health since I had the Picc line last summer, 2014.

So, now what? I drag myself through every day, hoping the next day will be better. I’m finding less and less to enjoy as I am too fatigued. I have an appointment with a different doctor in November; I’m hoping to try and find some other ways to treat this along with antibiotics. I do have tons of supplements and I am trying to take some antivirals, but it got to where I was taking like 30-40 pills a day and that got old real quick. My diet needs to change. I know this. And I need to make it happen. I just get so tired!

We’ll see how tomorrow goes. At least I can tell my doctor what is going on and that in itself can be a relief. I promise to update soon.

Peace – B

Fire in the Hole

Fourth
Fourth

Well, I certainly haven’t been diligent with posting. Just a quick update, I’m still having issues with my lower back. Insurance has denied a lumbar MRI. Doctor exploring possible colon issue, possible pinched nerve, and a few other things. The pain is bearable, and I just don’t have the gumption to fight the insurance on it. My kidneys are good and they were my main concern. However, I have had all kinds of other check-ups and doctor visits just to make sure the rest of me isn’t falling apart: eye doc, dentist, general doctor. All of those visits have turned out just right. None of this is an excuse for not posting!

Hopefully, all of you enjoyed the 4th of July weekend. We had plans both Saturday and Sunday, but Lyme played its card, and it was a doozey. One positive is that since I have been having better days, I can really feel the herx when it comes on. I started feeling under the weather on Saturday. I honestly just chalked it up to a busy week; I actually was doing things a “normal” person might do! Running errands, grocery shopping, doctor visits. It was all kind of amazing. I haven’t been up for much of any of that in a really long time. Last summer I had a PICC line so I was somewhat limited in my scope. I also didn’t feel really great most of the 5 weeks I was dosing. Anyway, by Saturday afternoon I was in bed with a headache. My husband had to go to our friends’ party by himself but he was very understanding and that helped me not feel so cruddy.

By Sunday though, all was lost. I woke up about 3 a.m. and felt so nauseous. I managed to slip back to sleep for a few hours but by 6 a.m. I was up. Everything was hurting. Joints, head, tummy. Oiy! I took a hot Epsom salt bath and went back to bed. Yet again, we had to cancel with friends. But I just couldn’t even “suck it up”!  I mean, have you ever felt that kind of nausea where you just do not want to move because it makes it worse? Yes, that was my Sunday in a nutshell. I was literally in bed all day long. And no reading or anything productive. The little a/c window unit on high, the curtains drawn, and the heating pad on full blast was what my day entailed. I finally crawled out of my cave about 7:30 p.m. and ate some corn on the cob.

Today is better. I’m exhausted and my stomach is still making some strange noises but overall, I feel like I am going to make it. I really thought I was doing a decent job on detoxing but maybe not so much. I am just so grateful that it is summertime, and I can manage this disease a lot easier and without inconveniencing a bunch of people. Of course, I am sorry to have missed all of the fun with our friends. Trying not to beat myself up about letting people down is a real struggle for me, as I am sure it is for all chronic disease warriors.

Again, I hope this was weekend you were able to make some great memories, – B

The Livin’ Ain’t Easy

Hello to all. Summertime is here, and Janis Joplin’s rendition of “Summertime” is playing in my head. The “livin’ is easy,” no? Alas, not so much. It’s been a challenging first 2 weeks of this break to say the least. Summer began last week, (and I am a teacher 🙂 ) and I had a few days that I sincerely enjoyed. I worked one day, but then by the next day, I had so much back pain I could not get out of bed without help. The pain was on my right side and severe. Not just like a pulled muscle but achy and sharp all at the same time. So, I rested. Logically, I figured my body was just finally relaxing. I just needed to rest. Yes, right, rest would help. Also, I was able to get an appointment the next day with my LLMD just in case.

But, the pain did not improve. By Friday, the pain was almost unbearable. But no fever. My husband had to drive me to my doctor appointment. I broke down in tears several times because of the pain; it was ridiculous. You may be asking, Why didn’t she go to the ER? Well, we know with any chronic illness one doesn’t get far at the ER.

After a urine analysis and some more tears, it was determined that there were no kidney stones and no kidney infection. Whew. But I did have a possible UTI. Doc prescribed different antibiotics from the ones I already take for treating Lyme and some mega pain meds. Thank God. She told me that we would treat for 3-5 days, and then I should be good to go or at least back to Lyme Normal.

But, here I am, a week later and still having lower back pain. Not as crazy or severe as last week, but boy howdy, it’s still there. Next up then is a lower back MRI with and without contrast. This isn’t scheduled for another week. Before my diagnosis with Lyme Disease, actually 2 full years before being diagnosed, I had a spinal and brain MRI. I was having hip pain on the right side and numbness in both feet (both decent symptoms pointing to possible Lyme disease). That MRI was inconclusive for MS so the neurologist sent me on my way. If only one of the  4 doctors I saw that summer had tested me for Lyme I could have started treatment 2 years earlier and 2 years less sick. I’m not trying to be whiney, it just makes me angry sometimes.

I spent yesterday and much of today in bed. I’m struggling to be productive, to be of value but I spent and will spend most of my time online here or FB. I need distracting, and I don’t have the concentration skills for reading of any length right now. Struggling to stay positive and pain free are the real challenges at this moment.

Am I worried about the MRI? Not really, and why waste time worrying? I am hoping of course that it gives us some insight into what is going on in my lower back. I’m sure that whatever it is that it is Lyme related somehow, and I am very grateful that I now have a doctor who can and will help me and that it isn’t a waste of time and a lot of money like the last one I had in 2011. Last time I definitely got conned in that I had no idea that the Imaging office was out of network even though my neurologist had sent me specifically to that place next to the hospital where he was located! Oy. Insurance companies, but that is for another post.

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I’m trying my best not to be depressed. But thoughts and lists are piling up in my brain:  I’m not doing anything productive or fun. This is my summertime and the days are precious. I had to cancel a few appointments because of the pain issues. My husband has been working non-stop, and I haven’t seen him much. I haven’t been away from the house for a week, whine, whine, whine.

Anyway, thanks for listening and thank you all so much for reading. I do hope you and yours are having a good time and that you are able to enjoy the good stuff coming at you.
Gracias – B

Peace and joy to you all – B