Tag: coping

“What Letter?” – Happy Friday!

It’s always a good time to laugh!  Enjoy and Happy Weekend!

Advertisements

Summer 2017

Howdy ya’ll! I hope your summer is sailing along smoothly. I always feel extra lucky because as a teacher, I have summers off (kinda). The first 6 years I taught, I worked in the summer. I spent 3-4 summers as a shift manager at Starbucks (I had been a manager for them before teaching) and then I spent about 3 summers teaching as an adjunct.

After that, sometimes, I would teach a summer high school course. This wouldn’t be all summer, just 3 weeks. And some summers, I attended conferences and or week-long workshops. However, these past 4 years, I haven’t done anything of the sort. I struggle to keep my summers work-free so I can rest and try to get my health on track.

I now marvel at the things I used to do before getting severely ill. I also used to adjunct during the school year, usually teaching one evening college class each semester. No can do now. And so, because of illness, I have definitely modified my activities.

deckchairs-355596__340

But back to this summer. So some things I’ve been able to do that I normally cannot manage while working:

1. Hangout with friends. Nothing fancy but stuff like dinner and lunches. Just visiting and spending time together.

2. Go grocery shopping! I’m so not lying. This chore can be so overwhelming and so full of anxiety for me I just cannot manage it. So I’ve actually sort of enjoyed (except the bill!) going grocery shopping for us this past month.

3. Spend time with family. With energy so limited while I am working full-time, it is rare to just get together with family and visit. It’s a total gift to get to do this unplanned.

4. Be upright and not in pain after 4 p.m. daily. Sure, I still have to rest. And yes, I do still have pain periodically any time of day, but it’s nice to know that some days, I can be up and active in the afternoon, on a weekday!!!

So as you can see, there’s nothing too crazy going on here this usmmer. But I’m glad I have the time to do a few cool things I can’t do normally.

I’m off to cook some dinner for my husband. I forgot to add that to my list! 🙂

Happy Summer, friends. Talk to you sooner than later. -b

P.S. I really feel like Bilbo below!!

200w_d

A Week Long Lyme Headache

I woke up this morning, early, and I was really excited because I didn’t have a headache! Yippee, thought I. And then I realized that I’ve had a headache for over a week now. Maybe 10 days? It subsides off and on, but I think it is the same damn headache. Maybe not, but that really doesn’t matter all that much. The pain matters more.

It may be the insane weather we are having. Last week at this time, it was 80 degrees. Then by Sunday, it was 27 degrees out. And today? A rainy and moist 75. Seriously. So, yeah, there’s that. It may be that the semester just ended and even after 16 years of teaching, it’s still pretty stressful. More stressful when chronically ill. So, there’s that too.

There have been a few days these past few weeks where I just keep taking medicine and hoping one of the many selections will just give me some relief, and periodically something has. Usually it is maybe an hour or so at a time. Then, the monster returns. It isn’t a migraine. It’s just a constant pain inside my skull.

Before Lyme disease, I rarely had headaches. The only headaches I experienced were either alcohol induced or hormonal. Indeed, I was a lucky duck. My mom has had issues with headaches her whole entire life including migraines. And my husband also has migraines periodically that lay him out for most of the day/night.

Then, in the fall of 2012, I began to have daily headaches. Not crippling, mind you, but just enough pain to not be able to ignore. Every day at work, by noon, I could feel it coming on (or maybe it never really went away). Sometimes, nausea would accompany the headache. The Daily Headache continued for months on end. Of course, there were a multitude of other symptoms going on but the headaches were something quite new and stood out more than say the fatigue or the periodic joint pain.

When I saw the Worst Infectious Disease Doctor Evah (although statistically, ID doctors are NOT LYME LITERATE) in January 2013 with a solid 25 symptoms including the onset of the new Daily Headache, he told me to drink more water (since I was hospitalized with a horrible kidney infection in 2006 I drink almost a gallon of water daily). The ID doctor dismissed every single symptom I explained to him but the bitterness of that particular doctor visit is for another time. Needless to say, almost all of my symptoms were classic LYME DISEASE symptoms and luckliy, I was diagnosed (and CDC positive) less than 6 weeks after this visit with the dismissive ID doctor. Anyhoo!

As I moved into oral antibiotic treatment, the headaches continued except at some point, I can’t pinpoint when, I began to have migraines. WTH! Migraines really suck! I now can empathize way more with my mom and my husband and others! Hours and hours of pain, nausea, ugh. For a while, and I can’t be more specific because of my short-term memory issues (LYME symptom as well), I had daily headaches and then migraines in between. Good times. I am so sorry if you suffer from headaches and/or migraines, my peoples!

When my LLMD took me off of antibiotics full-time last November 2015, I still had the headaches. And the migraines. But, slowly and surely, these daily headaches and the migraines began to let up a bit. So, for the past few months, probably since say June (again, short-term memory loss!), there’s been a reprieve from the daily headache. Since June, I’ve had maybe 3 full-blown migraines. This has been progress! I think that this progress has been the result of many things coming together at once, such as Lyme treatment (after so many years going untreated) and dietary changes.

migraine

But, since Thanksgiving, my diet has been seriously not so good. I had cut out all sugar, carbs, cut down on wheat and corn products. Oh, Thanksgiving. I mean, I haven’t gone totally CRAZY with eating sugar, etc. but I have been drinking more soda and well, I sure haven’t been grain-free. I plan on getting right back on my diet after Christmas. I can see now that it has helped me to control some symptoms and while it was a bit of an adjustment to new eating habits, it certainly is worth it.

Like I said, this headache started about a weekish ago. On my last day at work, before Winter Break, I sat in my classroom, in the dark, just trying to work through the pain (no worries, I didn’t have students LOL).  Saturday was much of the same. At least this week the headache hasn’t been a full-blown migraine but still. I’ll tell you though, I most definitely appreciate the time I have without headaches now. Pre-Lyme, I never noticed how wonderful it is NOT to have a headache. Chronic Lyme disease continues to teach me lessons. Hey, just trying to stay positive! 🙂

And, here comes my little friend. Back again today. Time to rest a bit. 

Toodles friends – B

 

5 Proactive Ways (maybe) to Balance Work and Lyme

Can you tell I’m a little  MEGA stressed out about returning to work full-time on Monday? Maybe more than a little? Don’t get me wrong; I do love my job. Teaching definitely is my thingy, and I wouldn’t want to give it up for any reason. Yet, there is a big BUT. There always is, isn’t there?

Since my diagnosis in March 2013, working has been tough. That spring semester, I’m embarrassed to say, is a blur. I was extremely sick most of the fall semester 2012 then diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and Lyme disease in the spring. Immediately, my doctor put me on antibiotics and treatment began. Unfortunately, I missed many days that semester. My students were amazing as were my colleagues. I had support everywhere I turned. This made it bearable and motivated me to get to work when I could.

The thought, “I love what I do,” sustained me through many, many hours of pain, nausea, headaches, and much more. It helped me through the 2nd year post diagnosis as well. By the end of the 2nd year, I shed some of the responsibilities I had beyond teaching, being department chair, a sponsor for a club on campus. Letting these things go was so, so very difficult. I felt like I was losing parts of myself that I might never regain. I almost felt at times that I was giving into the illnesses by cutting back on things I just couldn’t do anymore. For awhile, I felt “less than.” It messed with me psychologically and sometimes, it still does. However, it was for the greater good.

Yes, I am glad that I passed the torch to others who can and will do an exceedingly good job. So this 3rd year of post diagnosis found me (and finds me this fall) in a less demanding position with more time to accomplish much needed tasks at work rather than bringing everything home. Strangely though, this past year (school year 2015-2016) almost seemed the hardest one of the past 2.5 years. I’m still trying to figure out the Why it feels like it was such a challenge. Granted, some symptoms have improved. This past year, I didn’t miss as many days and at least 3 of those days were doctor appointments. So, what is the problem? Why am I so dang worried about this new year starting up??

Trying to find a balance
My room awaits….

The main thing I am most worried about is the ability to continue my work. I am down to a very limited amount of paid sick days now; I do not have long term disabilty (although added this August, the wait time is 12 months for any claim). Some money is saved for emergencies but not enough (I never think it is enough!). I hear you, my friend, you’re telling me to take one day at a time, and I agree 110%. I so completely agree. And yet.

While I say that my main concern is whether I will be able to continue to work, yes, while that is the big picture, more disconcerting is worrying about  how I will feel each day. Last spring was really hard. I wouldn’t have made it through without my BFF/teaching buddy, for reals. She was/is my angel, and I never worried about when I might be out because we shared everything. But my angel has retired. I am freakishly happy for her, but I’m not sure how I will make it without my little buddy cheering me on every day.

In January 2016, I had a cold that turned into bronchitis. Then, I went through a severe fatigue cycle, which lasted several months. And to top it off, I missed a week of school in May due to a terrible rash I developed on the left side of my face, my left hand, and right arm. In between all of this, I saw my regular doctor here in town 4 times, a rheumatoligist 2 times, and my out of town doctor once. Oh, right, and I was trying (key word is “trying”) to teach, 5 classes, every day. It got so bad that I would go to work, barely make it through the day (God forbid there was anything scheduled for after school), come home, feed the puppies, throw in some laundry, and then go to bed. Sometimes, the thought of sorting the mail or taking a shower made me cry. No joke.

Most of April and May were this way. Weekends? No, I could not do anything on the weekends. If I wasn’t trying to catch up on grading, then I was mostly in bed resting or dealing with a migraine and nausea. Both total killers and kill joys. The only function I attended in the spring of this year was a dinner with friends and a graduation party. I missed out on many events, a baptism, birthday celebrations, a theater show, baby showers. My life literally passed me by. And I am afraid of going back to that level of non-functioning.

Just a little TLC needed to make this feel like Home…

Well, there it is, boiled right down to the syrup: FEAR. Fear of ending up at that place where all I can kind of manage to do is work. I felt so disconnected from myself and from others when I reached that bottom line, you know, the one below the E?  I know that sometimes, we have to go through the motions so to speak but doing that every single day for months? It’s a dream killer, my people. 

A.Big.Fat.Dream.Killer. Just barely surviving hour to hour takes the fun out of any and everything. It takes the joy rogh out of talking and bonding with students, chatting with colleagues, planning lessons,  etc. I don’t want to go back to that type of physical and emotional state. Did I make it last year? I did. But I honestly didn’t realize how much it took out of me and how much of life I missed every day because I was again, just on the edge of survival.

Maybe you are in a similar situation? Or maybe you need to do a reboot on how to juggle your chronic illness and work? I HEAR YOU! I have to get my head right before Monday.

Here’s my plan of attack, and maybe these can help you too. We (yes, plural pronoun!) NEED TO:

  1. Pace ourselves – uhm, yeah, THIS! And it is #1 for a reason. 

  2. Stay on our special diets! For me this is – No sugar, no gluten, no processed carbs, no soda, AND mucho water! When I am feeling tired and stressed, I have a strong voice telling me to eat sugar or drink caffeine. Just say NO.

  3. Try out 2-3 yoga poses at lunch or during a break every day. Just taking a few minutes to stretch can feel rejuvenating.

  4. Shoot for a 5 minute meditation session every day. I mean worst case, I will do my best to squeeze in 3 minutes. Yes, it sounds goofy and yes, it will be a real challenge for me but I keep hearing great things about doing this. I’m going to use the Insight Timer app for Android. It’s free and has some great sessions to choose from.

  5. Try and do something fun/social once a month. This one will be extra HARD!! It’s not that I don’t want to do things; I am sure you are the same, but like me, I am sure you also experience so many times where you are sick and so fatigued to the point you just can’t do anything but rest and/or sleep. Let’s try to do this one and without feeling guilty if we just can’t sometimes. 

    **Good point. We will revisit these in a month’s time to see how        “WE” are doing!!**

What else can I/we incorporate in the day to day to relieve tension and frustration? Any suggestions or wisdom you can share with me?? Any self care I/we can use to keep it together (like everything together)? Really, I appreciate any feedback, suggestions, advice! 

On that note, I take leave of you for now. Have a great evening. Here at our Casa, we are going to watch some of The Good Wife and chill in the A/C!  Blessings to one and all – B

Don’t Read This if You Are Grateful for Your Illness

 

 

For the past 3 years, I have been chronically ill. I don’t like it. I don’t embrace it. I don’t want to “make the best of it.” Am I angry? Hell’s yes. Do I focus on the negative a little too much? Damn straight. Can I move past the negative to bathe in the positive? Not today, my friend, not today.

Many of the tools out there available for us to use as support for dealing with chronic illness (or anything else!) are based on positivity. And these tools are wonderful most of the time. But sometimes, I don’t want to be positive. I don’t want to learn positive mantras. I don’t want to hear how much I can “learn” from dealing with a chronic illness. I don’t want to be grateful for every single thing. Every single day. I don’t want to be “grateful” for contracting my illness because it’s brought me to a better understanding of myself. Tuck Fhat!

Now, I am not dismissing the power of positivity and the role it plays in our making the best of the cards we’ve been dealt. But sometimes, I am just plain old pissed off. Aren’t you?  YES, all of the affirmative mantras help. Meditation helps. Quiet helps. But the frustration can build up, even when we are “dealing” appropriately with it day to day. Am I right? Do you feel anger sometimes?

Where does your frustration come from? Me, I get angry when I wait 4 months to see my doctor, and she spends 10 minutes with me. I get discouraged when I have symptoms that I thought were gone for good. I get exasperated when my memory fails me and my brain doesn’t work right. I get outraged by the lack of medical research and treatment options for Lyme. And I get enraged when Chronic Lyme disease is dismissed by the medical community and by the public at large.

IMG_277926934979723

Sometimes, it really does feel good to be MAD. To be infuriated. To be beside yourself and livid. Does it change anything? Not at all. But for me, it solidifies my strength, my willingness to do battle daily, my resolve to overcome.

Do you feel this way sometimes? Please tell me you do. 

Later, my peoples. If you need to punch something, feel free. -B

 

 

Meltdown City, Next Stop!

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

 

Be Good to YOU

 

So we’ve (as in my husband and I – we are both teachers) been on summer break almost a month now. It has been pure heaven. What have I been doing? Producing? Well absolutely nothing, my dear friends. I’ve had some doctor appointments, dentist, eye doc, you know, just those things that have been impossible for me to manage while working because of the massive fatigue.

But otherwise? I have nothing to show. And how do I feel about this? Delightful!! Fantastic! Superb! It is down right, totally fine. I used to feel guilty about not doing anything, or not being productive every minute of the day. I was always busy. Now, at the time, I enjoyed being active, working, exercising, socializing, and such. But Lyme disease changed all of that.

Over the years (even before I knew I was ill), I’ve struggled with a lot of guilt and angst about not doing enough (these are, of course, self imposed standards of “enough”). I would push myself, as I always have, to make “things happen,” to “get er done” as we say in Texas. While resting, I would stress out about the things I had (self imposed!) to accomplish that I hadn’t completed. Then came along nausea, headaches, joint, pain, severe fatigue. Well, all of this made for a witch’s brew of toil and trouble!

Now, I admit, it has taken time to make this change and there are still times when I click into that previous me mode, and I take it to the limit. It’s usually not a good thing though and if I can catch myself before that manic phase kicks in, well everything is better overall. 

Looking back over my 15 years in education (I worked 10 years outside of education so I most definitely appreciate the time off), I realize that I have worked almost every summer for the first 10 years. First, out of necessity, and then, for the extra money and experiences. These past 3 summers of Lyme have been about treating and resting. Actually, the first summer after being diagnosed I taught a 3 week class. What was I thinking? At the time, I thought, oh good, extra money and this Lyme thing will probably be done by the end of this summer after treating for about 4 months at that point. HA HA!!! That was BEYOND wishful thinking for reals!

Anyway, I know this post is kinda all over the place, but I guess one point I am trying to make is Take it Easy. Don’t Kill Yourself trying to do everything you did before. Your body has to heal. You beating yourself up about it is certainly NOT GOING TO HELP your recovery process. Believe me, I learned this the hard way. 

keep-calm-and-be-good-to-yourself
Source: http://www.Keepcalm-o-matic.co.uk

 

 

What are some ways you treat yourself well? In what ways are you kind to yourself? Please add your ideas to the comments below. 🙂

Remember Please:

BE GOOD TO YOU!

Peace – B