chronic lyme

I Still Gots the Lyme!

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Hi all!! I know it’s been a skip and a beat. The aftermath of Hurricane Harvey ate up much of my time, then school started. Starting school 2 weeks late has thrown things off and so, I admit, it has taken me awhile to get back into the swing of things. I honestly didn’t realize that it had been so long since I had posted.

I hope this finds you and yours well. While the first day of Fall has come and gone, I can attest that it certainly has not arived whatsoever here in Houston much to everyone’s dismay. In fact, yesterday, the high was 90 degrees. No bueno. Yes, the shadows are changing, birds are gathering, and clouds look “fall-like” and yet, it is no cooler. I believe there is a cool front rolling through this evening (LIES!), but I don’t dare to look at WeatherBug and be disappointed again.

Pumpkins1

But hey! I still have Chronic Lyme disease! However, the months of July, August, and most of September were the best I have felt in the past 4 years!!  It has been like the clouds in my brain cleared away and the sun felt brighter and life was more beautiful. Sincerely.  When I saw my OT (out of town doc) in September, she asked me what I thought was working and making the difference. Here’s what I told her:

  1. the additional thyroid medication she put me on in May,
  2. being off of work (I had all of June, July and half of August off completely),
  3. and maybe the combo therapy of antibiotics ahe put me on in June.
  4. But really, I don’t know for sure.

I started back to work in mid-August, then the Hurricane/flooding, then 2 weeks off, then back to work. This is week 6 of being back to work full-time. So far, it hasn’t been bad. But I can start to feel a change in my body. It feels like I’m slipping somehow, albeit very slowly.

At my OT doctor appointment in early September, my doctor decided that it was time to start weaning off the antibiotics. I was hesitant but I also know that we have to see if I can manage without them. I have been on Rifampin since March and on Ceftin and Zithromax since June. I eliminated Zithromax first, then Ceftin, and this is my last week on Rifampin. I felt alright without Zithromax. But the week I stopped Ceftin (about 3 weeks ago), the daily headaches seemed to return. 

At first, I blew it off thinking it was becuase I had a cold. But I can say for sure now that the headaches are back. I’m also feeling a little less energetic. Again, I doubt myself and make excuses – I’m back at work, I’m not sleeping as much, I’m…..but I know deep down that it is Lyme related. 

I’m giving it this week, and then I will contact my OT doc. She said to let her know if I start having symptoms again as I come off the antibiotics. Of course, I am having all kinds of thoughts, worries, emotions about this but that is for another post. 🙂 

I just keep telling myself not the dismiss ANYTHING nor any SYMPTOMS. I have to trust my gut on everything and that is OK. Lyme became CHRONIC in my system because it was left to go bonkers for years in my body.

That ain’t happening again. Not on my watch.

Pumpkins

 

Peace to you, friends. Until next time xxoo – Belle

 

 

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Lyme and Relationships

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Mary_Oliver_quote1

So, I have totally steered away from discussing and writing about the reality of trying to have a marriage, well any relationship really, while dealing with chronic Lyme disease. Why? Because it is TOUGH. In most cases, I feel like a failure and I feel guilty. I know, I know. It isn’t my fault I’m sick and I don’t choose to be sick. But still. All these feelings get tossed around. Many times, I feel like my husband and I just can’t speak the same language.

He’s been awesome, don’t get me wrong. But after 4 years of this illness and not a lot of progress, I think we are both just stuck in how to move forward. How to be more accepting of the chronicness of my illness, and then how to accomodate what comes along with it. We aren’t doing too great of a job, honestly.

I guess like Trump said about being president, “I thought it would be easier.” I thought figuring things out as a couple would be easier than it feels like right now.  We are talking and discussing all kinds of things so I think that’s a good sign. But I’m still scared sh**less and freaked out about it all.

I don’t want to lose my husband and my best friend. I want it and US to work but I don’t have a clue what that might or should look like.

Any advice or wisdom you can share? It would be much appreciated!

Anyway friends, I hope your Sunday was and is a joyous one. Peace.

 

 

Hey Tired, Meet FATIGUE

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Over the summer, I’ve felt like my cognitive issues or the neuro Lyme, have improved. In June, my LLMD here in town (I have another doc out of town) started me on a supplement, ATP Fuel. Since being diagnosed with Lyme disease in March 2013, severe fatigue has been one of my major, and quite consistent soul crusher, er, I mean symptom.

It’s continued to be a lingering symptom. Now, when I say fatigue, or severe fatigue, I don’t mean “tired.” There is a chasm of difference, one I never understood anywhere near well enough BLD ( Before Lyme Disease).

You know what makes me “tired”? Staying up too late, doing too many activities, physically or mentally exerting myself ( this excludes Pokemon Go).

But fatigue? A whole other ball game, my friends. Being “tired” means you need sleep so you sleep and wah lah! You wake up feeling like a million bucks! You are King of the World!

But with fatigue not so much. Instead, waking up is a never-ending continuation of the fatigue you’ve been feeling for the last 3, 6, 9 months, or even years. It’s like a prison sentence that you don’t even have enough gumption to get angry about. It’s like being in a cave without light. I could go on but basically FATIGUE is not being “tired.” Fatigue sucks the f-ing life force from your body. And the most depressing thing about chronic fatigue (well, there really is a list of things), is not knowing when or IF it will end. No matter how much rest and how little of everything else, that’s always the question. Will it Ever End?

I’ve written about fatigue before HERE and HERE. Hopefully, these posts can give you an inkling of the severity of the fatigue many Lyme patients as well as many chronic illness patients experience.

Happy belated Martin Luther King day!

Peace -b

Just Well, No.

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Hi my people. Yep, I’m missing you too. But, I am struggling with inspiration and with life in general at this point it seems. These past few months have been tough. I know I am being vague in a way, and I am so not trying to be evasive. Overall, it’s been a challenge to keep working. A real challenge. Don’t get me wrong. I love my job. But overall, it has just been a struggle to keep it up while dealing with the chronic fatigue and a myriad of illnesses I contract due to my sucky immune system.

isayno

So, yeah, both the emotional and the physical challenges of working a full-time job have pretty much consumed all of my time in recent months. Unfortunately, I am also trying to dig deep to find joy. Even in the little things. I don’t know if it is the time of year or the incessant constant day to day barrage of symptoms, or the trying to escape some of the chronic symptoms that seems to have made me shut-down a little on the inside. I’m trying to figure it out but honestly, I have found even that kind of thinking and reflection just exhausting. IDK.

I just wanted to check in becasue, well, I miss the blogging world and my blogging people. I promise that I am making a concerted effort to get myself back on track and back in the Game so to speak.

I hope this finds you well and full of JOY. Peace. -b

Featured Check out Honeycolony!

HoneyColony CBD Oil: A Review

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** “I have been given this product as part of a product review through the Chronic Illness Bloggers  network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” **

If you are a first-time visitor, well, HOWDY!! And thanks for stopping by! Here are some other posts you might like check out:

Don’t Read This if you are Grateful for your Illness

The Long Lyme Con Continues…..

How are Lyme Disease and AIDS Alike?

Now, onto the review!

Hi, my people! Well, here we are, post-election in the states and moving quickly towards the holidays.

When I was first diagnosed with Chronic Lyme disease, now almost 4 years ago, I thought I knew what it was all about. You get bit by a tick, you might get sick, and then you are treated and cured quickly. HAHAHA!  Little did I know! So once I began researching this crazy and unpredictable disease, I began realizing that there is no CURE. That in many cases, including mine, Lyme cannot be merely treated with 14-28 days of oral antibiotics. Not even. And I began to understand, especially after being sick 6 – 12 months, that I was going to have to try out some unconventional, non-Western medicine options, to treat this bacterial infection.

I had been hearing and reading about CBD oil long before I decided to try it out. Information was mixed but the one common denominator seemed to be QUALITY of the product. Yet, I had no idea where to even begin. My first foray into the CBD sphere was, and now regrettably, a product I found and purchased from a seller on Craigslist. I know, I know. Believe me, I really was clueless, and in my Lyme social circle, no one had a recommendation for me. But I knew that I wanted to try this option. No Bueno. Honestly, I think there was turpentine in it. I tried to take it a few times, but the taste was just so disgusting, I could barely gag it down.

From that point on, I realized, and the hard way, that I needed to invest in QUALITY. I continued my research and then recently, I was offered an opportunity to try out HoneyColony’s CBD Oil. I have tried this company’s products in the past, and I have not been disappointed. I jumped at the chance to try out their CBD Oil.

HoneyColony’s CBD Hemp Oil is a blend of several ingredients, including Teasel root as well Astragalus Root. You can visit this page for a much more detailed list and explanation. I have tried both of these roots before in the past with some positive effects, but not at the same time and not as a part of a CBD Oil mix. When my product arrived, I was really excited to give it a shot!

I know some people may be hesitant to try CBD Oil as there is a lot of misinformation out there, including that it makes you “high.” However, according to HoneyColony, “Cannabidiol (CBD) is extracted from the Cannabis plant and has no euphoric properties whatsoever. This formulation offers all the health benefits of CBD without the feeling of being high.” At no point of my using this product have I ever had a euphoric feeling or a feeling of being “high.”

The first stop I made before adding this product to my daily routine was at HoneyColony’s  13 Commonly Asked Questions about their Superior CBD Oil product ranging from ingredients to usage. Since this quality CBD oil is mixed with coconut oil (no weird ingredients in this product!), this oil has a very smooth taste. There is no aftertaste nor did it bother my throat or stomach. It is silky sweet and easy to administer.  I take just a drop in the morning and then one at night. While I haven’t necessarily seen a huge impact in the morning for myself (and mornings are so, so difficult for me), I have experienced an effect in the evening. While I struggle with getting up, the joint stiffness and fatigue, lately, I have really been having sleep issues. I can go to sleep, but then I tend to wake up 3-6 times a night. It’s been a serious hindrance in the past few months.

So I started taking a drop of oil about an hour before bedtime as suggested on the  13 Commonly Asked Questions page. This seems to help me relax enough to get to sleep. Recently, I have also started taking a drop when I wake up during the night. Doing this has been beneficial in helping me get back to sleep and to stay asleep throughout the night!

Look, HoneyColony products are top-quality products! Yes, the price is higher, but again, the QUALITY is worth every penny. I’ve tried enough other inferior CBD oil options to pay twice over what the cost of one of HoneyColony’s CDB bottles cost.  I’ve thrown away more that I care to share. And this bottle that I received about a month ago is still more than half full. I won’t go anywhere else in the future to purchase CBD Oil other than HoneyColony!

Happy Sunday, my friends. Take care – B

P.S. If you are a first-time visitor, well, HOWDY!! And thanks for stopping by! Here are some other posts you might check out:

Axon Optics – A Review

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** “I have been given this product as part of a product review through the Chronic Illness Bloggers  network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” **

I’ve always had sensitive eyes. My eyes are blue, and so anytime I am outside, even on a cloudy day, I have to wear sunglasses. But since contracting Lyme disease, the light sensitivity has increased, and I have to be careful about too much exposure to light, both outside and inside.

With this light sensitivity sometimes comes a migraine. I never had these either before Lyme disease. Now, I have daily headaches and periodic cycles of migraines. I have found that light can be a trigger for a migraine. I am especially sensitive to fluorescent lighting which is pretty much everywhere!

Axon Optics to the rescue!

My new pair of glasses!

So when I was given the opportunity to try out Axon Optic eyewear, I jumped at it. Axon Optics offers special glasses and sunglasses for light sensitive migraine sufferers. As a part of the review, I was able to pick from 3 different frames. Axon offers their eyewear with prescription and without. As I wear contacts most of the time, I opted for the glasses without prescription. Axon offers a wide variety of frames both modern and classic making it easy to select a pair of glasses that complement the wearer’s face shape.

When the glasses arrived, I was really excited to try them out, especially at work where all of the lighting is fluorescent. The glasses were the exact frame I had ordered and the lenses were a tinted rose color. Hmm, I thought. These will be pretty different from other glasses most people wear.

At first, I was hesitant to wear them while I was teaching. I teach teenagers and well, as we know, they are not forgiving when it comes to fashion. Again, the rose tint makes these glasses stand out. But one morning while at work, I felt a bad headache coming on, and I bit the bullet. I began wearing them about 8 a.m. Pleasantly surprised, I received many compliments on these glasses from both co-workers and students!

Happy

I wore my glasses all day that day, and I kid you not when I say that I began to experience relief within a few minutes of putting them on. It was almost like a protective screen immediately came down between my eyes and the lighting. The rose color was soothing. Since being diagnosed with Lyme and chronic migraines, I do have migraine medication that I can take as needed. But since receiving my Axon Optics lenses 2 months ago, I have only had to take the migraine medication twice.

I carry my glasses with me everywhere I go now. When I begin to have even the slightest headache, I pop on my Axon Optics glasses. These glasses are also very versatile; I wear mine both inside and outside in the blaring sun. No need to switch over to sunglasses when I leave work. My Axon Optics do the trick!

If you suffer from migraines or even light sensitivity, I would highly recommend a pair of these glasses. Not only have they helped me reduce the number of headaches and migraines I experience, they have also helped me to cut down on the medication I have to take. In the future, I am going to invest in a pair of Axon Optics prescription glasses so I can have a pair to wear with and without my contacts in.

These glasses do everything the company promises and more. Please take a minute to visit the company website, Axon Optics, or their blog for more information.

P.S. Right now, Axon Optics is offering Free Shipping on all orders through November 15th!

Thank you for your time! -B

Hitting the Mark

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Make it happen!

Make it happen!

Lately, I have been feeling like I haven’t been hitting the mark. What is the mark, you ask? Just feeling like everything is balanced. Right now, I don’t feel balanced in my work nor in my personal life. The scale has been unavoidably tipped, and all of my time seems spent on How I Feel. I am diligently working towards getting this scale balanced again, but now, throwing work back into the mix, it feels like an impossible mark to hit. While my job is rewarding in so many ways, it also drains every ounce of physical and mental energy I can muster each day. By the time I make it home, I feel wasted and withered, no matter how easy or how difficult the day has been. I can’t seem to change these dynamics, which is so frustrating!

After years of fatigue and physical pain, I still haven’t figured out how to squirrel away any energy for myself and my personal life while I am working. I wish I had like a bank where I could deposit blocks of energy, then withdraw as needed! How awesome would that be! When I feel this way, Guilt stealthily creeps in, the guilt involved with not feeling like a productive partner in my marriage, like an active participant in social events with friends, like an emotional engaged human. I know guilt is self-imposed and controllable, but it is my go to feeling when I am worn out and stressed. No bueno. Trying to play psychological games with myself, every time I feel “guilt”, I am working to replace it with feeling “Grateful” instead.  Am I hitting the mark? Who knows. 

Yesterday, I started feeling Guilty for not immediately reading a student’s novel she wanted to share with me. I asked her to email it to me for future reading. Realizing the Guilt was moving in quickly, I endeavored on removing the Guilt and replacing it with the Gratitude that this person is willing to share a piece of herself with me. I will read the novel, and I will give feedback. I just couldn’t manage it during my lunch break yesterday. It’s all good. 

Do you feel Guilt? Do you feel like you are hitting the Mark? 

Peace -B

The Lyme Long Con Continues

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I am sure everybody hits points in their lives when they sit back for a moment and reflect on where they are, what their plans are for the future, how will they get things accomplished, etc. I know I used to do this periodically. Reflection has always been a part of my life. Pre-Lyme disease, I was always positive that the future would always be filled with unending growth and opportunities, both personal and otherwise.

Now? I’m in the midst of trying to treat a real illness, one that has been in my body silently and insidiously taking over. Lyme bacteria – a corkscrew-shaped bacterium called Borrelia burgdorferi – has played the Lyme Long Con with me and hundreds, I mean THOUSANDS, of others. For years and years it has slowly but surely, patiently, illness after illness, entered almost every single system in my body.

But the CDC and IDSA  (Infectious Diseases Society of America) panel are also complicit in this LONG CON, the Lyme Lie, the Lyme denial, against all of us. For years, the CDC has claimed that Lyme disease is difficult to contract and easy to treat. Yet, in the past 40+ years, science has confirmed that there are 300+ strains of Borrelia bacteria  with Lyme being merely only one of these 100s of strains that are all transmitted by ticks, fleas, and mosquitos worldwide.

This is so ludicris at this point that I honestly don’t understand how the CDC can still be promoting this misinformation. Just a few years ago, the CDC changed its number of newly contracted Lyme infections from 30,000 to 300,000 yearly. Yes, from 30,000 to 300,000!! A YEAR. And many believe that this number is much lower than actual cases each year. 300,000 PER YEAR. Let that sink in. Just to give us some perspective, there are about 50,000 new HIV cases and 200,000 breast cancer cases each year in the US. Yet, almost no money is going into researching Borrelia complex diseases.

I want to scream that BORRELIA INFECTIONs are real. LYME IS REAL. CHRONIC LYME IS REAL. CHRONIC LYME IS HAPPENING TO thousands of PEOPLE, not only in this country but globally as well!  As patients, we need to have access to treatment, individualized treatment, treatment that lasts more than a mere 2-4 weeks of antibiotics. You may say, but what the heck does this have to do with your first paragraph. Well, everything, my friends.

Lyme has stopped me, as well as thousands of others, in my path. It has stalled me for awhile, off and on for years, and I unknowingly placed faith in the CDC, the  American healthcare system, in my doctors, faith in health insurance companies. I placed my FAITH in these entities sure that they would find out why I was dealing with strange health issues off and on over the span of 3-4 years. They didn’t. 

Then, I put faith into the fact that once diagnosed, I would be treated, and I would have a recovery plan. Alas, getting a Lyme diagnosis almost means nothing. The USA has done absolutely nothing to improve research, diagnosis, nor treatment since the disease was discovered (it’s been around for thousands of years) in 1975. Yes, take that in. 1975. We know almost nothing more now than we did then. In the meantime, THOUSANDS of people have gone undiagnosed and untreated. Thousands have been misdiagnosed with MS, Lupus, and ALS, along with other diseases and gone untreated for Borrleia infections. Why??? The treatment for Lyme and other Borrelia infections has not and cannot be easily monetized – YET. So we wait. And 300,000+ and more become infected every single year.

So here I am. Halted. Stopped for much longer than anticipated. Perhaps, stopped here permanently. I know, I know. I need to be positive. I need to buck up. I need to stop focusing on my illness. Most days, I can manage this. But this past month, not so much. Sometimes, we just need to GRIEVE a loss.Sometimes, we need to be ANGRY. Sometimes, we just need to BE.

If you would like more information about Borrelia infections (this includes Lyme bacteria infections) then please watch Under Our Skin. It provides some basic information regarding Lyme disease as well as information about how the CDC and the IDSA are working in tendem, not only to discredit Lyme doctors and patients daily, but on a much larger scale, how these two organizations are undermining the most dangerous health crisis of our time.

 

 

Please be careful. LYME IS EVERYWHERE – WORLDWIDE. Take care, my friends – B