Ever-Changing Symptoms

I was really hoping these last few weeks of school would go very smoothly. I’d made it this far, limping metaphorically, but since spring break, I wasn’t doing too horribly. My protocol since March this year has been herbals only, and so the hope is that my body in conjunction with the herbals can combat the Lyme and send it packing. Yes. I completely understand that after taking a multitude of antibiotics for over 30 months including IV abx is hard on the system. Yes. I understand that my gut flora is messed up. Yes. I know it will take awhile to get my system back on track. Yes, yes, yes. Got it.

Knowing now what I know about Lyme disease and the various ways to treat it, would I go back and do the same thing? Most likely. When I was first and finally diagnosed with Lyme disease, I was severely ill. Not only had I had Lyme for who knows how long active in my system, I also had a viral overload. Several viruses that we normally have once and then build an immunity to had reactivated in my system thanks to the bacterial infection. So, yes. I think treating with antibiotics was the best choice starting out. It took almost 9 months to truly see any difference in what I was experiencing. I didn’t herx either for about the first 9 months. I was one sick puppy.

Very rarely do I forget that I am still dealing with Lyme. It won’t let me forget. If it isn’t one thing, like severe fatigue, then it is another, like nausea and migraines. The symptoms seem to come and go with no rhyme or reason although the headaches seem to stay my constant companion. When my LLMD first started treating me in 2013, she said that “we want to progressively get to a point where you have more good days than bad.” Sounded like a great plan to me. And sometimes, that is the case for a few weeks at a time.

Recently though, I have had a string of pretty rough days in a row. As soon as I can, I will post about what is going on. Right now, I am just trying to put my nose to the grindstone and get through it. Consequences of this situation right now are that I cannot work, so I have been out this week. Of course, I am grateful that I have so much support at my work and people who understand, but I feel bad that my students miss out. But if it had to happen, this really is the better time of year since we are getting close to finals and summer break. It’s been an emotional rollercoaster for a couple of weeks, and I am really ready to get better and get back to work.

So for those of you with Lyme disease out there or a chronic illness, do you also experience a fluctuation in symptoms? Are they triggered by anything that you can pinpoint?

Peace -B

Afterfalling.jpg
via optimisticquotes.org

 

 

 

 

My Bed is my Bestie

Totally sad, but true. Since Saturday, not much has changed. My bed is my Bestie. I don’t even know how many hours I’ve spent in bed feeling not so bueno. Yesterday was more of sleeping, a few loads of laundry, reading, resting. I did manage to get out of the house, only because I had to, and so I drove around a bit near here and took some pictures. It was the Big Event this weekend, at least for moi.

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Winter sky of blue

This time of year it the most beautiful to me. I think it has to do with the crystal blue expansive skies, the golden colors mixed with grey and brown. It’s cold. But not the tepid cold. More of a biting cold. The kind of cold that makes your eyes sting. No wind though. Just pure perfection. The beaches are also my favorite this time of year. The ocean stirs no matter what is happening on shore. And empty, the beaches are empty of people which is total bliss. Only the birds and the sea creatures are scurrying around. Hearing the waves lap, the seagulls squabble, feeling the rigid breeze is all inspiring.

 

But I didn’t go to the beach. The nearest one is about an hour plus away not even considering traffic, and hey, I can barely make it to the front door. No can do. This morning was just more of the same. Headache, stomachache, body pain. My alarm screamed at 5 a.m. and so did all of my body. This Monday was so not happening.

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January 2016

 

It’s disappointing to feel terrible enough that I have to take a sick day. I know that is what they are for, but in the past, I would take a sick day and then feel better. Now, I take a sick day and just pray I can handle the rest of the week, whether that is 4 more days or just one. It’s frustrating. What did I do today? I ran the dishwasher, did a load of laundry, and walked out to get the mail. Otherwise, I spent the rest of the day in bed with my BFF. We snoozed, watched some t.v. and did a smidge of reading. Sounds delightful to many I’m sure. But all the while, the Lyme played in the background, the pounding headache, the sore joints, the brain fog, and the stomach issues. Constantly moving to escape the pain if on one side too long, I have 2 heating pads going. I thought about adding a 3rd but that is a little excessive and truly ridiculous. And the not knowing if the next hour or day will be better? That is the most frustrating. This unpredictability of this disease is why I am trying to do my best to just relax and enjoy the times when I do feel decent. There is no “storing” up feeling good nor energy. Both things come and go, flitting in and out like a hummingbirds. So quickly, I can be at about 80% then, bam, 20%. So it goes.

Hopefully, though, now that I rested today and I was good about not being too pissed at myself, I can go to work tomorrow and be productive. Sorry BFF, you’ll have to handle the rest of the week alone.

Until next time, my people, peace and joy to you and yours – B

 

 

Talk About Zombies

The fatigue is back, and it is taking absolutely no prisoners. If you recall, my LLMD had me take a break from the antibiotics for about 7-8 weeks, recently. I’m really not sure why except that I could use one after 27 months on abx. For the first 3-4 weeks, all was good. Headaches let up, nausea was less. I was hopeful. Then at the beginning of September, I caught a cold. Pretty much all hell broke lose.

I had the cold a solid week. Then I still had sinus, coughing, lingering everything. And the Zombie fatigue came on, full throttle. Ah, the misery! And the achy joints and just body aches. I was convinced also that the EBV was activated again with the fatigue being so terrible. It took everything I had to get to work, and then back to bed every day. I spent the weekends in bed. When I get into my doctor at the end of the month, she said upper respiratory infection caught me. Let’s check for the EBV. I assumed, and I had a list – that we would also check Lyme, Mycoplasma, HHV-6, thyroid, etc. since I told her I was having such severe fatigue. But,nope. EBV came back quiet, and she had actually tested for nothing else. And my follow-up? Yeah, in December. December?!?! Frustrated, I emailed my doctor about my concerns, and now I am going back in a couple of weeks. I’m not sure what will be different this time around, but it’s worth a shot. My doctor did not have a suggestion for the fatigue other than she still thinks it is caused by Lyme. Honestly, I don’t know. When I was at my sickest, right before being diagnosed, I did have this kind of fatigue so it is very plausible. I just worry that now that I have been dealing with the Lyme for so long, is something else rearing its ugly head?

In about 3 weeks, I am actually also going to see a new LLMD. I have been scouting about for someone else to add to the “team.” I love my doc, but I feel like we never have enough time to address all the issues I am having. Lyme is so complex once it is in the chronic stage, and she really just doesn’t have time for the treatment I need right now. I am hoping this new doctor works out; I will still see my LLMD here as well. The new doctor is about 5 hours away so it’s not like I can jump in a car and go see her anytime I want to. I have heard she likes to try to treat Lyme as a whole rather than in pieces. FIngers and toes are crossed that she can help me out.

But this fatigue needs to go! I’m taking iron and vitamin B hoping that helps some. We were supposed to go out of town this long weekend, but I actually got really sick Friday afternoon, and we couldn’t, or rather I, couldn’t manage the trip. It was disappointing. My husband and I were looking forward to going to the beach and getting out of the house. Instead, I was in bed Friday afternoon through yesterday mid-morning. I think I may have actually had the flu on top of the Lyme issues. I’m feeling a little more like myself today.

I’ve never experienced fatigue like the Lyme fatigue that comes on. When I used to say, “I’m tired” I meant that I had worn myself out doing most likely something physical. But once rested, I was back to it, taking my energy for granted. Now, I never feel rested. I sleep, I rest, I don’t do much, and I still feel so exhausted; it is a chore to think about getting up to brush my teeth. The fatigue just adds to the memory issues and the brain fog. Sometimes, I just want to lie in bed, in the dark, with no sensory anything because sometimes this is the only way I can think straight. Does anyone else need to do this? Just go somewhere quiet and lay down?

I know it is overused, but this fatigue really does make me feel like a zombie. I seem to move in and out of each day half-awake, in a weird trance. It’s hard to explain. Outside of work is difficult enough but I can lay down whenever I want. Work is a whole other challenge. I just try not to think about getting through the week ahead but instead focus on getting through the day. This strategy helps I think. And no matter how much I rest each day, by the next day, the fatigue is compounded. But I want to work. I want to do things. I don’t want to be a Zombie. None of use do!

Happy fall, peeps – B

Fall in the mountains

Back to Bed

Well, all in all, this Thanksgiving break, I have had a decent run of it. But Thursday and today, I am paying for it. It’s 12:30 p.m. on a Saturday; my husband and in-laws are outside working on our new shop and here I lay in bed. We did go to our friends’ house last night for dinner. It was lovely, and I had not seen them since Labor Day weekend! When I am at work that is about all I can manage to do so socializing it not something  can partake of much these days. The evening was nice and I kinda felt normal, and not the “new normal”, the old normal.  🙂

In an offensive move, I played everything safe, too! I took my meds as scheduled, I drank just one glass and a smidge of champagne, I ate more salad than anything else, and I shared a piece of cheesecake with my husband. I know that alcohol and sugar are not great for me but, I promise, the rest of the time, I do a pretty good job of not using either. We were home by 10:30 also!  But then, I could not go to sleep.UGH.

I took my doxepin as soon as we arrived at home. I knew it would take a bit to kick in, then I took lunesta. But for the life of me….I think I finally managed to fall out about 1 a.m. I guess this is part of the reason I feel so horrible today? Damn! Waking up about 6 a.m. to give my Chihuahua Chino his anti-seizure meds, I could barely get out of bed. The bodyaches were everywhere; I basically limped to the kitchen. No worries thought I, I will take a pain med and all will be better. Chino got his meds, and I took mine and headed back to bed. I was finally able to get warm and cozy and doze off for a few more hours. At 9, when I did get up for good today, I was in as much pain all over as I was at 6 a.m. Plus, the headache started its familiar knocking. Moving around as much as possible and having my daily cup of joe, I still could not shake the body pain. It’s one of THOSE days, friends. Uncool.

Struggling and stubbornly, I did some household chores and then headed back to my sanctuary, my sweet bed. But, I am still hurting, and I feel frustrated. Chino and our other Chihuahua, Boo Boo, are on the bed with me sacked out, and I am writing this blog.

Where I am today!
Where I am today!

Can anyone suggest anything to help alleviate the bodyaches and pain? Anything? I have tried an Epsom salt bath, and I have taken a pain med. Both have helped a bit, but I a still having difficulty moving around which is a bit scary, honestly. What are some things you do to at least push back these symptoms and/or take the edge off? Thanks in advance.

Peace, B

Netflix is My Friend

Well, it is a beautiful November day here in the south and yes, I did spend a few hours outside. In a heated whirlpool. Pure HEAVEN. I have decided that I need one of these here at the house. I wish!  Anyway, that is a bit off topic. I’ve never been much of  television watcher; my parents restricted it when we were kids, and I am so glad that they did. I learned that a t.v. should not be on unless one is watching a program. Now, in the 21st century, there are televisions everywhere: doctor offices, grocery stores, restaurants, you name it. Honestly, it is so amazingly annoying.

However, I guess I am now an official hypocrite. We don’t subscribe to cable t.v. but man, we [really, Me] sure can watch some Netflix. Netflix rules! I am officially an addict since becoming ill. While I love to read, reading anything for any extent of time often boggles my brain. You may experience this as well. I sit down to read a book, and then about 3-4 pages in, my head starts to hurt, my eyes don’t/won’t focus, and/or my brain just feels very confused and stressed. So I stop. This doesn’t happen all of the time, but enough so that I don’t do it as much or anywhere near as much as I used to. I am hoping that further into treatment, my reading skills will come back to me. My doctor says this is some of the neuro lyme staking its claim. She is confident it will go away in time.

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Anyway, to stop making excuses for myself, once we purchased a smart t.v. about a year ago, it was on. We live in the country so we have satellite internet, but streaming still works pretty well. I am not going to lie. I love being able to watch shows without commercials and whenever I want to for the most part. It really is the one indulgence I have at this point in the game and one I enjoy. I can watch on the laptop, the t.v. or my Kindle. It is Awesome! 🙂  I know it is a form of escapism but for now, I am OK with that. Would I rather be out doing things, or reading, or creating a masterpiece? Why, of course, but right now, I physically cannot do any of those things because of the pain and fatigue. Netflix is kinda my BFF for the time being, I am a tad embarrassed to say!

What is one or two indulgences you partake in since you can’t do certain things like we used to? Don’t worry. We are among friends! No judgement! 🙂

Happy Sunday all you people, -B

Irony or Fate?

Hello out there! Here’s my story for today:

We now have a new insurance; it usually changes every 2-3 years. However, now I cannot have my labwork done at my doctor’s office. I can only use a certain lab that is not available there on location. So, I had to find a lab I could use in my area. Done. No big deal. I had my visit with my doc Thursday and headed to the lab on Friday after work.

I know the medical building where the lab is located because it is in the area, and I have been there before to see another doctor of mine. As I exited the elevator on the 3rd floor, I looked to my right first to see if the lab was on that side of the hallway. BAM! The name if the Infectious Disease doctor I saw before being correctly diagnosed with Lyme Disease, was glaring at me. I started to swell with anger. I wanted to march in there and punch him in the face. Really! I said out loud, “You have to be f***ing kidding me!”. Luckily, no one was in the hall to hear my sailor mouth. My mind started swirling with all kinds of thoughts from that visit I had with him over 19 months ago.

When I was was referred to him by my PCP, it was a last ditch effort on her part. She is my family doctor, and both of us had been trying to get to the bottom of my fatigue, sleep disturbances, nausea, back pain, etc. for the past 3 years, I was in her office about every 4-5 months with symptoms, the worst was the crushing fatigue and every time, I tested positive for an EBV infection. I had been tested for everything and probably twice such as Lupus, Rheumatoid Arthritis, Vitamin D, infection, Thyroid, you name it. For the joint pain and numbness in my feet, I had seen an orthopedic doctor and a neurologist and had had a spinal and brain MRI. Nothing. After about the 5th time testing positive for an EBV infection, I was referred to the OD doctor. What was causing the recurring EBV? All my blood tests for the past 3 years were sent to him as well as any of my medical record from my PCP. He had my whole life in his hands.

By the time I headed to his appointment in the early spring of 2013, I was a complete mess. I was so exhausted, I could barely make it through the day at work. I was in pain much of the time. I was having headaches of which I had never before in my life. I wasn’t sleeping well, I had severe neck and lower back pain, shoulder and hip pain, stiffness, indigestion, nausea, you name it! I also was worried. By this point, I had been ill off and on, with symptoms cycling and becoming worse for the past 3 years. I knew something was really wrong. My PCP had been talking about Fibromyalgia and Chronic Fatigue Syndrome but she wanted to rule out any other options and so I had my appointment with the ID doctor.

Now, I am no sissy pants. I take things as they come, and I am a problem solver. I have always had a crazy awesome work ethic, and I take pride in what I do. At many junctures in my life, I was working 2 jobs. I exercised, and I was social. But in the past year for sure, a lot of that had changed due to my health. I looked forward in a way to this doctor visit because it would assumingly help rule some things out and perhaps even help me find an answer. Let’s just say, I had a lot invested in this visit, and I had faith in my PCP’s referral to this ID doctor.

It was the worst doctor visit I have ever had in my life. Literally. The doctor came in and began asking about why I was there and my symptoms. I explained the EBV activations. He stated several times that EBV is not recurrent and that the odds of this happening were slim to none. Ok. I asked about the blood work showing the EBV infection. Oh, your doctor didn’t run the correct labwork. Everyone shows “exposed” to EBV as mono. Ok. As far as my exhaustion, I needed to relieve some of the stress in my life. Really? For my daily horrible headaches, which I never experienced before, Drink more Water. At this point, I am starting to get aggravated, as much as I can in the exhausted state I am in. For my neck pain? Well, well, you are a woman, so I am sure you carry your purse to one side. Maybe you need an MRI? No, doctor, I just had an MRI this past summer and nothing, NADA, showed up. Lower back pain? Hmm. Right hip pain? Go back to your ortho doc. This went on for about 30 minutes. For every symptom, he had an answer and a stupid one. By the end o the appointment, I was even more confused, angry and emotional than I had been walking in. At the very end, I asked about the soreness all over my body. He pushed on some pressure points and said, Yep, you probably have Fibromyalgia. I asked for a doctor referral. He told me he would not refer me and that I had to go back to my PCP for a referral. OMG!! WTH. Are you kidding me?!?

I cried all the way home. From sheer exhaustion, from getting no answers whatsoever, and from getting no help. I felt so hopeless. I was drowning in all of this unexplained pain and fatigue and there seemed to be no light at the end of the tunnel. Although I drove away angry at him for his condescending manner and his refusal to even so much as take blood, I didn’t realize how terrible he really was until I was actually diagnosed. Two months later, thanks to my researching online and finding a doctor whose specialty is FMS and Chronic Fatigue Syndrome, I tested full blown CDC positive for LYME DISEASE.

So, now, after being in treatment for 18 months and still plugging along, I walked off the elevator and I was taken back to my visit with HIM. I will have to have all of my lab work done there, 4-5 times a year, and I will have to pass his office. I am still trying to understand why this has come back into my path after all of this time; I wonder what I am supposed to make of it. Any suggestions or ideas? I know what I want to do, but it wouldn’t be productive nor healthy for me.

If you think of a productive way I can deal with this doctor, please let me know!  I feel like my doing nothing just condones his ignorance and his unbecoming attitude. It feels wrong to do nothing, Like he did to me.

Peace, -B

Cliff’s Edge

On the edge!
On the edge!

What a week!! I thought there about Tuesday and Wednesday that I wouldn’t make it, but guess what? I did! I wonder at what costs though. I say this because I have been struggling all weekend with symptoms. Most aggravating is the all over soreness and pain. Then, there are the IBS issues. And then the indigestion issues. All of this hit me on Friday at school, and it hasn’t let up. NO MERCY!

Without TMI, I just feel all over terrible. If I can get one issue to subside, another flares up. I have tried epsom salt baths, resting, pain pills, alka selzer gold, heating pads, gingerale, tea…..nothing, nada. I am pretty sure this is what is mean by herxing!  I have tried taking my mind off the total uncomfortableness of being me by reading, Facebook, grading essays, playing Candy Crush, watching Netflix. Alas, I just can’t get out of myself enough to feel better.

I missed an event last night, a family event, and so that was tough. Then, today, my husband is working on his new shop area and of course, I am in no shape to help. Instead, my 60+ year old in laws are slaving out there. I feel so useless. It all hit me this morning in the shower, which was a chore in and of itself, and I just gave in and started crying. I do have meltdowns like this every so often but it’s been awhile. I do not like it when this happens because I feel so helpless. I feel like I have lost some pieces of me that I may never get back. I feel like I am at the edge of a cliff, teetering, looking into a vastness, a place where nothing changes and I just continue to struggle every day.

I know deep down that this is just a culmination of being exhausted, stressed, and depressed. I guess being aware of all of these things helps? My husband says that it is a good thing to have a meltdown every now and then, to grieve about this illness. And, for the most part, I do feel better after my little meltdowns. How do you deal with all of the stress and symptoms of Lyme disease? Any tricks you can share with us? I think I need some Kid President today.

Off to a nap. Peace – B