#spoonies

Rashes, Rashes, We all fall down…..

/ Read Between the Lyme / 17 Comments

Happy Sunday out there! We are having some very unseasonable cold weather with the high yesteraday at a 50 degrees! WHAH? In April? It’s been pushing 80 this past week but then a cold front rolled in. It is probably the very last until September so we will take what we can get and enjoy it fiercely!

The past 30 days have been pretty unfun. I mean overall, it’s been a good month. But healthwise, it’s been well…strange. Since and before contracting Lyme, I have dealt with weird rashes. I have very fair skin and red hair so it comes with the territory. But in the past 2 years, I’ve had some bouts with rashes on my face and hands that have been really challenging. There also seem to be no answers to the Why I get these cropping up periodically.

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Right after Thanksgiving, a rash poppped up on the right side of my face. It itched like crazy. But I babied it and it cleared up within a week. I didn’t bother to go to a doctor because in the Spring of 2016 had  had the same, even worse though, and did the whole shebang of treatments including a dermatologist visit that rendered: No skin lupus diagnosis. Let’s just say it was a massive waste of time and I found no answers. You can read more about it here The Damn Rash is Back. 

So back to 30 days ago. The rash again started on the left side of my face. My eyes swelled up. Patches began showing randomly on my arms, legs, neck. UGH. I had an appointment with my LLMD already so I waited until I saw her about 10 days later. The rash still hadn’t cleared and was making me crazy, espeically in the evening when it flared up and itched so horribly. I literally had no expectations as my faith in my LLMD here in town is seriously wavering.

But, she gave me hope! She tested me for alleriges and I tested nigh for all. She put me on a steriod pack and gave me a steroid shot. She wanted to start me on allergy shots. Things were looking up! Within a few days, the rash was clearing up. I could sleep and wear my contacts again! Yippee!  But not so fast.

On March 26th, I went back to the doctor’s to begin the allergy shot regimine. The rash from the previous 3 weeks was all but gone. I picked up my shots, instructions, and plan. I also received 2 small shots to begin. I would take another 2 shots on Thursday and 3 days from then on for 6 months.

Then, Tuesday happened. I woke up. Both eyes were seriously swollen and red. The rash was back on my face. I called the allergist. She was very surprised as I was started on the lowest dose. By Wednesday, the rash was all over my stomach as well. WTF???!!!

I had to take another day off of work and returned to the doctor the following Monday. She insisted that I see a dermatologist again. She also told me to take the shots again on that day….WHAT?!….and told me if it got worse….WORSE???? ….to take another steroid pack she was prescribing me. I refused to take the allergy shots and left very angry.

Side note: While my LLMD here in town did diagnose me with Lyme, thankfully, and she did save my life I believe, she just doesn’t not have the time nor the tools to treat chronic illnesses in a  capacity needed. Or maybe in my case. I’m not sure. I continue to see her because she is close. And I need a doctor here that knows Lyme. And she does. However, increasingly, I get frustrated with her and her lack of assistance now that I am starting to improve but still no where near well. My other LLMD is about 3-4 hours from here so I cannot run to her when I have thes kinds of issues. I also can’t get in to see her ASAP. Appointments for her are booked out 3-4 weeks. 

I tried that Monday to get into a dermatologist. But they are also booked up. One office I called said May 2nd was earliest appointment. The rash was killing me. I finally broke down and started the 2nd steriod pack this past Thursday. The rash is almost cleared up again.

I have no idea what is going on. I also do not believe a dermatologist will be helpful. Plus, I have no rash to biopsy now. I refuse to try the allergy shots again right now. They are sitting in the fridge but I just can’t chance it. True, I could get the rash again just due to regular allergies. BUT I am not tempting fate by giving myself a shot right now. 

I’ll see my out of town LLMD in July. I tried to get on standby this past week but no dice. She has an email service that cost annually I am considering. It gives complete access to her as needed via email. I’ve heard good things abut this especially for the out of town patients such as myself. 

So that’s been my eventful month! How are all of you doing? I hope your journey in recovery is going well, friends. Until next time.

Hugs, Belle

 

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Update from ReadBetweentheLyme :)

/ Read Between the Lyme / 5 Comments

Howdy Friends! It’s been awhile, I know. This year has been off to a kinda crazy start. In order not to bore you, I’ve put things into bullet points:

  • My husband had the flu over Christmas break. It lasted about 10-12 days. I tried to make sure he was as comfortable as possible. I also tried to be very patient. He recovered in time for New Year’s. 

  • School started back up, and it’s always a challenge and stressful after a longer break. I mean no one wants vacation time to end!

  • We offered to house our 22 year old nephew who was in-between homelessness and rehab. He stayed about 4 weeks. It was very stressful and not such a good experience. 😦  But, he did get to rehab and is doing 30 days at least.

  • Over the MLK weekend, we had freezing temperatures. Then, we had sleet and ice. We had 2 days out of school due to weather. I won’t lie, it was pretty fun to have “snow days!”

  • I had a severe back pain attack the same week. I ended up taking 2 days off of work because I could barely move. It was awful. My doctor says it is degenerative disc dsease. I ended up having another flare just a  few weeks after this one. I’ve considered going to a back specialist, but I am so over doctors right now!

  • Towards the end of January, my husband caught some upper respiratory infection. This lasted about 7 days. Since we are both teachers, it isn’t difficult to catch the latest crud going around at school. And believe me, there’s been a lot of germies circulating this year!

  • February was a month of Seattle rain and dreariness but in Houston. There was maybe one day that we had some sun? It was seriously depressing.  We celebrated my mom’s birthday, but that was about the only fun thing happening!

  • Spring break just started and my nephew spent 2 days in the hospital with a virus. He is on the mend now. 

  • About 10 days ago, I had a rash start up (again!) on my left eye. It lasted all week and then seemed to go away. But the Saturday, the rash started on the top pf both hands and on my neck. From there, it has popped up on legs and arms. It is so much worse at night. I’ve been downing Benedryl. The last time this happened, my LLMD was clueless (she made me treat for bed bugs which it is so NOT) and the dermatologist said it wasn’t “skin lupus” and sent me on my way. I’m just aiting it out because again – I am so over doctors right now!

  • The weather has been beautiful! Temps are about 70 and it is sunny outside. 

  • I had a list of a few things to get done during Spring Break and I have about 140 research papers to grade, but right now, I am just going to take it easy. 🙂

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So that is a really quick update! I see one of my LLMDs this Friday, but I don’t expect much at all, if I even see her personally. I’m not trying to be bitter but I am just a little. I’m very grateful that I have my holistic LLMD that I see every 4 months, otherwise, I just don’t think I would have made the progress I have this past year. 

I hope you and yours are enjoying your days. Best to you.

Peace – Belle

Happy New Year 2018 with Many Thanks

/ Read Between the Lyme / 11 Comments

Hello and Happy New Year! I know I’ve been a bit silent lately, but it isn’t for any particular reason. This winter break is going way too fast. My husband has been battling the flu. It hit him the week of finals and is still hanging on. The doctor said this flu hangs on for sure. I think he’s finally on the mend. My fingers are still crossed that I will indeed NOT get this flu.

We had a great Christmas, very sinple. I hope you and yours had a good day as well! I haven’t been up to much really. Keeping the house clean, puppies fed, husband nursed. All things I am so grateful for as a matter of fact. Being off of work has allowed me to rest and do things I normally just can’t manage to do while working full-time mostly due to fatigue and other symptoms. Goingout  to a movie and out to eat are definite treats!

Overall, my health has been steadily alright this semester. I gained some ground over the summer, and I feel like I have managed to keep a grasp on most of that ground. I see my holistic doctor in a few days, and I am curious as to where we go from here. I’m still dealing with afternoon fatigue. My thyroid is not working properly – AGAIN – and a few weeks ago, I started having slight numbness on the lower right side of my face. Nothing that itches or hurts. It just feels like there is pantyhose covering that small area. It is a strange feeling.

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Newton and I taking a New Year’s day walk. COLD!

Yes, I told my doctor here (my original LLMD) this information when I saw here last week – oh wait. I didn’t see her; I saw her PA. Now the PA is a very sweet person, but now it has been 6 months since I have seen my primary LLMD. Seriously.

Anyway, I told her about the numbness and she said, “Wow. Yes, I am sure that is annoying.” That was all. I’m still waiting for my labwork to come back and for the doctor to advise me on what is next. Honestly, I don’t expect much. I shouldn’t be irritated. This is one of the many reasons I went and found a secondary holistic LLMD 2 years ago. However, my 2nd doctor is a 3+ hour trip away from home and does not take insurance and so I have 2 doctors – one near, and one far. I count myself extremely lucky for sure as I know many Lyme disease patients who have no access to an LLMD at all.

Thank you for all of your support throughout my humble journey with Chronic Lyme disease thus far. This blog and this space with you, my friends, has been such a wonderful gift. You have listened to me, encouraged me, understood me, and loved me. I couldn’t ask for anything more. From the bottom of my heart, I embrace you and wish you each the best of everything in this beautiful year to come. Here’s to 2018!

With Love and Joy, Belle

 

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LuAnn is all ready for the freezing temperatures we are experiencing here in Houston!

Out of Sorts

/ Read Between the Lyme / 1 Comment

I’ve got the Holiday, er, I mean Christmas, I mean Holiday tunes on right now. They’ve been on for hours now. I was really hoping it would cheer me up and make me happy but I guess it isn’t that easy. For this past few days I’ve been feeling out of sorts. I’m pretty sure I know why but i just don’t like to admit it.

It could be all the mess going on in our govenrment right now. I can’t seem to find a balance between apathetic and activist. At least in my brain. There is so much to try to process, so much that is wrong, so much just plain meaness, racism, etc., it’s overwhelming. I keep taking off the Twitter app on my phone, then readding it. On, off, on, off. I try to keep up with the news, but again, it feels like we are getting bombarded from all sides with just MESS. That may in fact be the strategy. To silence people through deliberate chaos. Who knows. But it’s all been demoralizing. For a year now….no, longer.

It could be that we’re in between holidays right now and close to the first day of Winter. Don’t get me wrong, I like the holidays, especially all of the time off to enjoy, and Thanksgiving this year was awesome. But it’s dark when I leave for work and by the time I get home, the shadows are beginning to close in. Living here in Southeast Texas we certainly aren;t starved for sunshine, but I think the short days are affecting me.

And of course there was the rash on my face. It’s clearing up now but it’s just a constant reminder that Lyme is still around. It has more power that I want to give it credit for, and I don’t like the lack of control. You would think after so many years of this shadow companion I would be more accepting and humble. Well, not so much.

And on that note, Lyme disease is the bottom line instigator of this feeling-out-of-sorts mood. I’ve been reminded by the rash, by the increasing joint pain, by the headaches and periodic nausea that indeed it is an illusion to think that I’m a regular person. “Ha ha” laughs Lyme right in my face. HA HA! And while I am grateful that I have had a couple weeks where I only had to deal with Lyme symptoms minimally (they never go away comepletely), I still don’t appreciate the false feeling of “being better.” I get it, but I don’t have to like it.

I’m trying really hard today to shift my focus and not dwell on the fact that I’ve been sick for all of my 40s. That I’ve been treating for 5 years, that I’m still testing positive for this damn disease, that I am still SICK. That the medical community seems clueless in the face of this epidemic and that so many are suffering. That I feel sick today, like a hangover but I haven’t had a drink in months. I could go on but I’m sure you are over my whining by now! Thanks for humoring me!

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I think I am going to do my best today to put the Holiday back into Happy Holidays. Wish me luck, friends. The road is a hard going and a dark one right now. 

Hoping your day is one full of joy.

-Belle

 

Trust Thyself?

/ Read Between the Lyme / 6 Comments

Howdy out there! Well, yes, the Astros won the World Series, folks, and we here in Houston, Texas are celebrating! Good stuff! 

So, just a quick recap: I’m now officially off all antibiotics for a 2nd time now in my 5 years of treatment for Chronic Lyme disease. Sure, lately I’ve been a bit paranoid, wanting to chalk every.single.everything. up to Lyme. I certainly try to keep track of any weirdness or symptoms cropping up. You know, JUST IN CASE.

Lately, I’ve been feeling pretty fatigued in the afternoons. It hasn’t affected my ability to work, but I certainly do not get much of anything done after work. I’m not really noticing too many other symptoms so that is encouraging. There was one day this past week that I had a lot of stiffness and joint pan throughout the day, and it’s been a few months since that has happened. Again, good news.

But, yeah, the fatigue can be scary. Ever since I was so very sick this past March, the fatigue kinda freaks me out a little, I won’t lie. It’s one of those lingering symptoms of Lyme and especially Chronic Lyme. It’s like a shadow that follows me everywhere. I can’t seem to shake it. Even when I was off during the summer, it was always there, lurking. I feel like I have to always be on guard about the fatigue. It swallowed me up whole this past Spring, and I wasn’t sure I would be able to come out of it. Luckily, I did but it certainly wasn’t a given. Fatigue is stealthy and ninja-like too. It comes on slowly but quickly too and before you realize it, the fatigue takes over everything.

When I’ve been in the dark depths of this illness, in the pit of the chronic fatigue, the pain, the headaches, nausea, there have been times where I have actually doubted my own sickness. What I mean is, there have been times when I have questioned whether if I am really sick. I’ve  thought: maybe I am just  lazy? Maybe I just don’t want to work or maybe I just don’t like my job anymore?  Maybe I was sick, but I’m not anymore? Maybes, maybes. Why would I even question myself like this?

I think some it has to do with being ill for so long. I’m not sure. It took several years if feeling sick to get a correct diagnosis and then, in my case, even when I began treatment, I did not see any real progress in feeling any better for many years. I am sure there are many out there with chronic illness that sometimes doubt themselves. PLEASE DO NOT DOUBT YOURSELF, EVER.

Of course I am sick! In fact, I can almost remember the very day I realized something wasn’t right in my body and that was in November 2009. Then it took almost 4 more years and at least 8 doctors to get correctly diagnosed with Lyme disease.

I know it’s utterly illogical to think otherwise. Whenever I have a little more energy and if I feel a little better, I am doing things I haven’t been able to do in a long time. It’s so stupid to blame myself formy  physical ailments. And yet. Those thoughts have crept in from time to time. Perhaps it’s some sort of weird coping mechanism? I’m not sure. 

But now that I have a reprieve from a lot of the symptoms, I know that these doubts were silly. I have to keep reminding myself to trust my gut and to trust my instincts. They haven’t failed me yet. In fact, they are what saved my life. 

Here’s a tidbit from Ralph Waldo Emerson’s essay “Self-Reliance” (we have been studying this in class and seems relevant. Maybe not, but I like it LOL):

“Every man discerns between the voluntary acts of  his mind, and his involuntary perceptions. And to his involuntary perceptions, he knows a perfect respect is due. He may err in the expression of them, but he knows that these things are so, like day and night, not to be disputed. All my wilful actions and acquisitions are but roving;— the most trivial reverie, the faintest native emotion are domestic and divine.”

And also Emerson says “Trust thyself: every heart vibrates to that iron string.”

That’s exactly what I intend. 

Have a happy week, friends. – b

 

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I Still Gots the Lyme!

/ Read Between the Lyme / 9 Comments

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.

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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.

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

 

 

One Down, and I don’t Know How Many to GO

/ Read Between the Lyme / 8 Comments

Happy Sunday, my people! I hope this finds you well and happy. So, I completed my first week back to work following our summer break. So far, so good. And granted, there are no students until August 28th. That may prove to be a different story. Of course, I may be running on a tad bit of adrenaline right now, what I have of it. I’m trying to pace myself if that is even possible. I’m not sure if it really is most of the time.

This past week was a lot of sitting and listening. It was also a lot of being around peoples and many of them for about 8-9 hours a day. The first few days, I struggled with over-stimulus. I also struggled with so much sound. About a year into my Lyme treatment, sound and light sensitivity became a real issue. I had never experienced either of these in my life so at first, I thought I was just being extra paranoid about my health or something. Then, I asked my doctor about it and she said both of these are Lyme related! I am not overly sensitive all of the time, but sometimes they both can really wreak havoc. At a couple of points throughout the week, I just had to go and find a quiet place to sit for a few minutes. I also utilized my migraine glasses for light sensitivity. I sincerely LOVE these Axon Optics glasses! 

We have another week of professional development on our campus. There isn’t much time set aside for working in our classrooms which is really just too bad. I’m not that stressed about that aspect because I know I can get it done in time, but I feel for new teachers. I am sure they are feeling mega-overwhelmed by now as I remember I did the first year I taught!

Nooooooo!

 

I am worried about sitting for so long every day in not-so-comfy-chairs. In fact, they are really uncomfortable. I figure I will get up and move as much as I need to in order to keep the fibro at bay as much as possible. I also worry about my brain functioning correctly. I seem to be ok in the mornings but depending on many things such as sound, lighting, peoples, pain, etc., things start shutting down up there and I just feel like I am running into a wall every time I try to have a thought. I hate that feeling but I’m trying not to fight it. It doesn’t help to get mad or stressed about it. It is what it is. I am merely trying to use my brain as much as I can when it cooperates! You know what I mean?!?

I hope you had a great weekend. And here’s to the week to come: May we all have a smooth and pain-free week. Peace – B

Heading Back to Work Very Cautiously

/ Read Between the Lyme / 19 Comments

Honestly, I’m not sure I wrote about trying to make the decision about whether to continue working or not this past spring.  I am a high school teacher in my 17th year now. This past March, my health and mental health were at the breaking point, and I had to go on a medical leave. That alone was tough. I was out lof work 3 weeks (one week was Spring Break). It was much needed time off to rest and get physically to a less fatigued state, and I was able to make it through the rest of the school year when I returned from leave. 

But taking a medical leave definitely made my husband and I have some serious and challenging conversations about whether I should continue to work or not. We’ve actually been talking about it for a couple of years now. But finances weren’t where we wanted them, savings wasn’t enough, we have a daughter in college….blah, blah. You know it all. Yet, in March, I was so bad, everything was so bad, that those things just weren’t that important anymore. If I had to stop working, we would deal with it. 

And yet. After some discussions with my husband, my family, and co-workers, I have decided to return for this school year. I’m worried though. And I may be putting myself into an awkward position if I have to leave in the middle of the semester or at semester time. I agonize over leaving my students like that, over possibly leaving my colleagues like that – basically in a lurch. But, work told me that I need to do what I can and what I want and if it comes down to a decision such as leaving then I will have to do it, and it will work out.  Bottomline is they would rather have me there for as long as possible then have me resign prematurely. This in itself is a relief of sorts. I know I’m replaceable; it isn’t that. I just don’t want to cause issues for others. Teaching is hard enough when everything is going smoothly!

Once I made the decision to go back, I was excited. Then, I transitioned to feeling freaked out. This summer, my health has improved. I don’t know if it is the new antibiotics I am on or my additional thyroid meds or a combo but it has been a real JOY! Yes, of course, I am off for the summer and so I can rest, etc. when I want, but I’ve been doing this for the past 4 summers and I can tell you for certain, this summer has been different. I’ve had days and weeks of energy levels I haven’t experienced in YEARS. YEARS. 

With this new found improvement in health, I am even more anxious now to return to work. Weird, right? I’m afraid I will lose this feeling, this energy. I’m fearful I will end up feeling so overwhelmed and fatigued that I can’t do anything outside of working (and even that became impossible in March). I don’t want this little victory for my quality of life to go away or be whittled away somehow.

I don’t know how I am going to handle the 8-9 hour days. Many of my physical symptoms have improved but what if I go into a flare? WHAT IF? I know I am making myself silly by worrying about thinsg I have absolutely no control over. I logically know this. I keep telling myself that I just have to take it literally day by day. Step by step. We’ll have to see how it goes. We have a Plan B…kinda.

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Source: pixabay.com

Teachers start back tomorrow. We’ll have a few weeks of professional development and then students are back August 28th. I’ve only ben anxious since Wednesday. Off and On….all of today. The alarm is set, I have my bag packed, there’s not much else I can do, right?

I want to be excited, and I am. I’m beginning my 17th year of teaching, my Awesome department chair gave me the classes I want, the schedule that best suits my health needs, the team I want to work with. There is absolutely nothing to not be grateful afor and about! My biggest WISH is that I am able to complete this school year in a healthy state.

Thanks for reading and for listening, dear peoples. Peace – Belle

Summer 2017

/ Read Between the Lyme / 3 Comments

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.

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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!!

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