Meltdown City, Next Stop!

How do you cope with meltdowns?

What brought all of this on, this visit to Meltdown City? Although I didn’t share it with you (yet), about a month ago, while I was still in school (working) I had a terrible Rash (in fact, it does deserve a capital “R”) on the left side of my face, on my left had, a few spots on both of my lower arms, and inside of my thighs. It came on suddenly. It took a over week, a trip to Urgent Care, 2 trips to my LLMD and a week out of work, along with several medications, to get rid of it. The reason I haven’t posted about this incident is – don’t laugh – is that it was pretty traumatic overall. I promise to tell the drama soon. Anyway, it finally went away, but there was no consensus as to what was the cause (except it was not parasitic).

It went away, school came to a close, my step-daughter graduated (happy dance!), summer started, on and on. Early in June, my doctor put me on this cool supplement called ATP Fuel for my low energy, and I have really been seeing some brain improvement function from it which was a real lift-me-up these past few weeks. Now, I am not saying I am “cured.” Not by any means, but I am certainly feeling like I had managed to get over a significant hump since severe fatigue has been one of my most loyal companions over these past few years!

Let’s just get downright crazy and say that mentally, I’ve had the best 2-3 weeks that I have had since before being diagnosed with Lyme in March 2013. It has sincerely been that big of a deal at, least to me. This past Wednesday, I had an itch near my left eye. Bug bite. That then spread all around my left eye, down along my jawline, and under my chin.Pretty much the same area that the Rash showed up a month ago. It was basically a battle to get into my LLMD. I do not have dermatologist, but I did call around, and I was able to get an appointment for Tuesday. However, knowing how horrible this Rash became last time (the top of my left-hand is scarred now), I saw my LLMD yesterday afternoon. To say this appointment sucked is an understatement. She put me on several medications, anti-viral, steroids, anti-itch pills, and said I must be getting into something and that it will clear up.

I asked, what if is doesn’t clear up? Answer, go to a dermatologist. When I asked if I should come back in for her to check me as well, she said no.It will clear up by Monday. Huh? I asked how will we know what is causing the Rash, and what if it comes back (you know, since this is 2 time in 4 weeks), and she basically said it may never come back. Well, yes. That is one way of looking at it. And while that in fact is true….I HAVE LYME DISEASE! It has taken over my immune system, MY BODY! I’ve had weird rashes in the past, I get cold sores a lot, I have chronic EBV. SO LIKE FOR REALS, LADY. Saying that it might never return is like laughing a the Gods. I don’t like this plan.

My left eye was almost swollen shut this morning, and the rash had spread to the other side of my nose and there was more on my left cheek. My mom picked up my meds for me, and I got started right away. Everything just closed in on me today. Not from this damn stupid rash, really. I’m just tired. I swing from one health crisis to another with barely any time in between to just feel like I have JUST Lyme. I’m not even in school right now, surrounded by close to 4, 000 people a day. Yet, I have a recurring Rash that my LLMD doesn’t really think is an issue. So yeah, the Meltdown City. In the shower. Me, myself, and I.

I think at the crux of all of this is the truth I am beginning to realize, or maybe now I am closer to accepting, is that the LLMD that has helped me thus far, is not going to be the doctor to take me into remission. Not from where I am right now, and not with how I am being treated (protocol). There are no other LLMDs here in the HOUSTON area. Seriously. It is too risky for doctors to advertise that they treat Lyme disease and many don’t. They do not have the first clue about Lyme disease. Truth. So, I continue to periodically request an LLMD list from the Texas Lyme Disease Association hoping that maybe a new name has been listed. And that the doctor listed takes insurance. Most do not.

This causes a whole other wave of worry to hit. Going to a doctor who does not take insurance means lots of money out of pocket. Depending on the doctor, it could run $700-$1500 per visit, not including meds, supplements, etc. LLMD doctors usually do not take insurance because they do not want to be beholden nor required to treat Lyme only by the approved and antiquated guidelines of the USA set by the Infectious Disease Society of America (IDSA). Many doctors across the US have been stripped of their license to practice for not following these corrupt guidelines. Of course though, insurance companies use these IDSA guidelines as standards for care and so even if one is LUCKY enough to find an LLMD who takes insurance, some things are not covered at all because the treatment doesn’t fall within the -again- corrupted and antiquated guidelines. 

But I have an LLMD that takes insurance and here close enough to where I live. I thought I was so lucky! And yes, she saved my life. I need more now though. My visits with her consist of about 10 minutes time. I list out everything, she focuses on the most detrimental at the time, reviews my blood work from the last visit, usually 3 months ago, and based on that she tells me where we are going, and sends me for blood work – labs we will review 3 months from now. WTH. There is no talking about nor treating any lingering symptoms, talking about detox, diet, anything really at all else about this complex stuff happening to me. Co-infections being addressed? Not at all. 

Finding someone new that I have to pay out of pocket, that is probably 3-5 hours away, is just freaking me out a bit. On top of all of that, I am worried about how much more I can work. I’ve pushed through and I want to work, but this past year has been extremely tough. I’ve been sick with other things more than not, and I am wondering, maybe I need to give my immune system more time to heal before I mix it up in the petri dish of high school. And since my LLMD only spends 10 minutes with me, I try to bring this up, but again, she also works crisis to crisis and that is just not cutting it anymore. Then, if I can’t work, how do I go see a doctor who doesn’t take insurance? How does all of this get managed when my eye is almost swollen shut, and I want to itch off the left side of my face? 

erupting-volcano-night-17297748Oiy. I just do not know. I’m trying to wrap my head around everything right now. I may have to visit Meltdown City a few more times before I get it all figured out.

I hope you and yours have a safe and wonderful 4th. Namaste, my peoples. – Belle

 

P.S. Maybe read some Declaration of Independence, eat a burger, drink a brew and maybe read a little taste of where I was last 4th of July – Fire in the Hole

 

The Turbulence of Lyme Symptoms

http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html
http://www.dailymail.co.uk/news/article-2336338/The-everlasting-storm-Stunning-images-unique-phenomenon-Venezuela-lightning-raged-EVERY-NIGHT-thousands-years.html

One thing that I think all of us experience as Chronic Lyme patients is the comings and goings of many different symptoms. Oh, yes, there are some symptoms that stay with us loyally, never leaving our sides. But then there are those symptoms that show up off and on like fair weather friends. You know the ones. For me, my Lyme best actors are joint pain, headaches of some degree, and muscle aches. Best supporting actors? Nausea, dizziness, achiness, joint pain in other joints, well, I could go on. For me, the hardest thing about all of these is how they can come and go so quickly. I have tried to find rhyme or reason for this but there really doesn’t seem to be anything that is a consistent trigger, at least for me, other than overdoing in some way (physically and/or emotionally) the day before.

Sometimes, I can go for half a day with just some joint pain and a nagging headache. This isn’t bad at all! Then, BAM. Full blown horrendous flu-like symptoms. I have to get to a place to lay down, shut out the light, try and think about happy moments in my life because my head feels like it is hitting a wall. My stomach cramps up and the nausea is overwhelming. This is what I like to call the main event. It can last for minutes, hours or days. How does one plan for anything with these kinds of things happening seemingly out of thin air?

Like you all, I try to plan ahead. I hope and pray that on the day of a planned out, party, dinner, etc. that I will be feeling “good” and that I can attend. More than many times, I have had to cancel plans. I have even tried resting the day before but again, it doesn’t seem to effect the next day’s outcome at all. It’s upsetting, frustrating and most of all disappointing. Staying at home in bed is not my idea of a good time.

So for an example, my husband and I were out yesterday, picking up some items for our garden beds. Actually, it was nice being out and about, looking at all of the beautiful plants and flowers. I guess we were there about 40 minutes. By the time we left, my head was beginning to play its tune; it was time to go home. Once home, I had what felt like a flu. A strong headache, stomach nausea and indigestion and stomach cramping. I spent the rest of the afternoon in bed, nursing my symptoms as best I could.

Today, I was able to work a bit outside earlier in the morning. Feeling the cool breeze on my face and the sun on my back was pure joy. The dogs kept us company while my husband and I pulled weeds and cleaned up the garden area. My husband, a very sweet man, said, “I’m glad you are out here.” I was glad to be out moving about, too. One day at a time and sometimes, one moment at a time.

Happy Easter, friends. Don’t forget to take The Lyme Disease Challenge if you haven’t already!  🙂   -B

Cry Baby!

So I’ve been quite weepy this weekend. I’m not going to say I never cry, but for the most part, this is a rare occurrence. Basically, I cried some on the way home from work on Friday, cried myself to sleep last night and then, after my husband left for work this morning, I had a mini cry session. What the heck is going on?!?!

I would blame it on my cycle, but luckily, it isn’t that time. I would blame it on what someone said, but besides my husband, I haven’t been around anyone else. Nothing happened at work to spark this; in fact, Friday was a good day teaching-wise. No event, no conversation, no outside force has caused this. Maybe it s hormones affected by the Lyme? Maybe a release of anxiety?

I don’t know, but whatever it is, it is making me feel very depressed. I can only seem to focus on the negative. I’m questioning my treatment, my sanity, my work and my relationships. Right now, I feel like the world is closing in on me. I am worried, exhausted, and stressed. Things like this are running through my head right now: Should I change my treatment? Should I try to cut down at work, somehow, someway? And if I can do this, will it make any difference at all? Or will I go another 2 years, seeing some improvement, but “not quite enough”? Can I even make it another year like this? At half capacity? Dragging myself through each day? Losing the joy for life chip by chip? As per the Indigo Girls, been feeling like these lines, ” We’re sculpted from birth/ the chipping away make me weary,/ and as for the truth/ seems like we just pick a theory.”

Struggling to stay positive, I think to myself, “so many other people out there have it worse that you!” I know this in my heart, but right now, I am being self-centered and feeling sorry for myself. I’m in a dark and lonely place right now, and I just have to own it. Embrace the feelings and move on. For today, I am in a full embrace and it’s hard to let go.

PaulNewmananigif_enhanced-buzz-12372-1379309462-6I hope you all are having a better day than I. Adding a pic of my favorite actor of all time….enjoy!    Peace -B

The New Normal

One of the catch phrases in my line of work, education, is that whatever new thing that comes along, and believe me there are so many “new” things that come our way, is that this new idea, strategy, system, curriculum, etc., is the “New Normal.”  It is a phrase used so often our line of work that it really carries no meaning anymore. However, I started thinking about this phrase in regards to my own health.

rockclimbimg

Although I do not like to admit it, I am fairly stubborn when it comes to my work ethic. What I mean by this is I will sacrifice pretty much everything else to “get the job done”!  And, I have been happy to do this most of the time. My work is rewarding, challenging, fulfilling, and interesting. Unfortunately, with my health compromised as it is, the work has become very difficult to perform. It is mentally and physically exhausting. It was this way even when I was in tip top shape, but I was able to balance it out. Now, I force myself to get through the day, sometimes counting how many hours or minutes I have before I can head out to go home.

I HATE this. Really, I do. Already, I have made compromises in terms of work, compromises I didn’t want to make at all. But, I physically cannot keep up like I used to do. Meetings after school? No can do. Extra duties during the day? No can do. Saturday workshops? No can do. I am mostly limited to the 8-9 hour work day, five days a week and even just that can be like climbing Mount Everest. My weekday evenings are spent laying on the couch like a zombie. Sometimes, on the weekend, I can manage a night out, but that is very rare indeed. It is all somewhat surreal. Like this isn’t my life. Sometimes, I think I am having a dream, and I will wake up soon and be able to do everything I used to do at work and otherwise.

But now after 20 months in treatment, I am beginning to realize that in fact, this is my “New Normal.” This is my life right now. It is a hard, hard realism. I’m struggling with it. I would like to believe that if I just keep my nose to the grindstone and keep up my stubborn facade that I will one day wake up and be myself again.Yet, in my heart, I know this isn’t going to happen. While I know I should not look at this as defeat, I feel like it is. I’m wrestling with changing my perspective because I do know that acceptance of this fact is the more positive way to go, but damn, it is difficult!

I am sure there are many of us struggling with this acceptance process. I sure wish it was easier; I wish I could snap my fingers and Wha La! I would be ok with the New Normal.

How do you accept this disease and the hurdles it brings to us? How do you change your perspective about the physical and emotional struggles without feeling like you are giving up a part of yourself?

Wishing all of us peace, -B

Has Autumn Arrived?

AutumnFor those of you up north, autumn arrived weeks ago, if not months ago! But here in the south, we have been waiting restlessly. Two weeks ago, it was still 90 degrees off and on. While we had a semi cool front, it sure didn’t stick around. But, this past week, temperatures at night have dropped to around 55, and in the daylight, it has only climbed to about 85 degrees. This is sheer heavenly weather, people!

So, this morning I was up by 6:30 – crazy, I know – brewed some coffee, then headed out to my little deck overlooking our mini pond. I took a stack of grading with me, but still, it was so beautiful outside. It was so very quiet and peaceful and honestly, it was just what the soul needed after battling through this past week. Thank you Mother Earth!

While it was a short week for us, every day felt like 2 combined into one. It really was that crazy. But it isn’t out of the ordinary, unfortunately. And, no matter how much I seem to get done on the weekend work-wise, I still feel overwhelmed almost every single day at work. Every time I think I have my head just above the water, something comes rushing in and I start to sink again. I am sure all of us have had this feeling at one time or another. It isn’t a good feeling, that’s for sure!

I take things off my plate. I delegate. I make lists. I ask for help. And still, I feel like things just keep coming at me, like bugs on a car windshield on a cool summer evening. I have reorganized, streamlined and outsourced. And still. Those damn bugs keep coming. In the past, my adrenaline would get me through, but I’m all out of that good stuff at this point. I only recently have felt even the twinge of a rush, and it didn’t last. Sure, I can push myself even harder, but then I just have to pay on the other side, in my personal life, which has already taken several hits in the past few years. Already, I come home from work wiped completely out, acting like Mr. Grumpy Pants. Pushing to get some chores done after the daily grind, you know little things like a laundry load and feeding the dogs, ultimately become humongous tasks, and my head and back start screaming for relief. Don’t get me wrong, I am very grateful I still have my job, but at this point, I am wondering, is it helping or hindering my recovery?

My brain is going around and around about this. When I first started treatment, I knew I did not want to stop working. It kept the illusion of “everything is ok” in play for me. This has gone on for about 19 months now. And, I have made progress. Lately, though, I feel like I have hit a wall in my recovery, and I am nowhere near the finish line yet. I am trying to figure out then, what has to give in my overall world to make room for me to work on my health even more. Anyone else in this predicament? And if so, how are you going about making a decision?

I am in a quandary. But, there is no need to make any decision today. I am going to keep working outside as long as I can until it heats up. I am going to breath in deeply and relax. I am going to drink my coffee and ponder ABSOLUTELY nothing.

I hope you all are having a great weekend – B

The Snowglobe

SnowglobeLately, I have been struggling with the fact that my life has changed. When I first started treatment for Lyme disease, my mindset was that I get through this. I was willing to put in the time. I figured a year would be sufficient. I tested CDC positive for Lyme; I tested negative for the big 3 co-infections. Assuming that the results were correct, I set my mind to healing.

I still worked but my boss gave me the utmost flexibility to leave as needed and/or take absences as needed. I didn’t attend as many social events. I tried to get my proverbial plate as empty as possible. And, I made progress. I did. The backaches subsided, the intense daily neck pain finally went away, the migraines became less frequent, the exhaustion became manageable. All of this was great. Then, I guess I hit a plateau.

So, here I am. I am not 100%. Honestly, inside I feel about 40% of my old self. Outside, I think people actually see me as almost 80%. I am a great faker and a great lier when it comes to the presentation of myself to the outside world. I am sure this is the case for all of us with a chronic disease. But since school started this fall, I feel like I am backsliding. The extreme exhaustion is creeping back in.

I have started seeing my my life from the outside. It is a weird feeling. Does anyone else have bouts of this? I don’t think it is disassociative disorder, but maybe just parts of it. Sometimes, in order to get through the day and what it entails, I separate myself from my physical body. Creepy! No, not in a creepy way! When I do this, I feel like I can make it. It is as if I am managing my symptoms from the outside with less attachment to the pain and whatever discomfort is going on at that minute. The problem is though that I have been doing this for a few weeks now and it is starting to feel like I have two different lives. I just don’t know how to explain it well. Really, though, does anyone else have this going on or something similar?

It’s almost as if, when I do this, the separation, that I am looking at my life and my actions in a snowglobe. Sorry, it’s the best analogy I can think of! 🙂 I am guessing this is a coping mechanism the brain sets up. However, I just don’t want it to become a rabbit hole. Also, I am concerned that this snowglobe effect will become a crutch in the sense that at this point in time, I am not dealing well with the fact that I am now 19 months into treatment and I have hit a wall. Like everyone else with Lyme and chronic disease, this wasn’t my PLAN!

I am hoping all of you out there are having better days than not. Drop me a comment in regards to this thing I have going on with me mentally if you feel comfortable doing so. I appreciate any and all comments!

Happy weekend, pumpkins – B