In Michigan, Governor Whitmer declared a shelter-in-place order that went into effect 3/23/20 at midnight. “The order directs Michigan residents to stay in their homes unless they’re a part of what the governor is calling ‘essential infrastructure workforce,” which includes health care workers, law enforcement, water and wastewater personnel, and transportation workers. In addition, residents can leave their home if they are engaged in an outdoor activity, or performing tasks necessary to the health and safety of themselves or their family, like going to the hospital or grocery store, under the order.” My son, who works at a large Michigan grocery chain, Meijer, has been declared essential and received a letter to carry to show it.
Please, keep in mind that these essential workers are doing what they can so that the rest of us are able to #staysafe #stayhome. Be Kind, patient, and flexible.
The Thursday before the shelter-in-place order, he had come down with a fever of 100o. First, he called into work (Meijer is paying wages for anyone who has to quarantine) and then he called his doctor. He had a sore throat for a few days prior and a gunky nose. The medical screener said that he most likely didn’t have the virus due to the fever being under 103o and that should it break, he could go back to work the next day.
Our daughter-in-law contacted us to let us know what was happening and to cancel the playdate we had planned for the day with our granddaughter. Up until that moment, I thought I wasn’t being affected by all that was going on. I started to bawl, feeling like I was outside of my body. Logically, I know that Andrew is healthy and young and doesn’t fall into the at-risk group for a severe reaction to COVID-19. But, logic wasn’t a part of that gut reaction.
Fear Creates Instability
I began to feel disorientated, my chest got tight, and I could tell that I was getting panicky. A sense of instability, like I’ve felt when hiking on a narrow rim of a trail traversing side of a mountain; one wrong step could cause a headlong tumble.
Thankfully, my husband came upstairs just at that moment and seeing me cry, he comforted me that Andrew would be all right by telling me what I already know. Then, he suggested we go for a walk in the woods.
Looking up into the sky through the pine trees, makes me feel small yet safe.
I walked mindfully, looking up through the evergreens into the serene blue skies-focusing and taking time to really notice. Breathing deeply, I savored in the earthy smell of damp pine needles and black soil underfoot. As the birds twittered (still want to look up what that bird was), the bright sun broke through splotchy clouds, warming our faces. I stooped down to feel the soft, cool moss on an egg-shaped rock. The emerald colors were brilliant compared to the dead brown of the oak leaves it sat in.
Nature’s early Easter Egg:)
Breathing in the cool, fresh air, slowly in and out through my nose while practicing belly breathing (diaphragmatic breathing), the unease in my chest and shoulders abated. I began to get my footing, feeling the fear being replaced with grounding.
The next day, his fever was gone and he went back to work that evening. That day, we had a wonderful overnight stay with my granddaughter, who lights up our lives and brings us all a sense of purpose.
Having this sweetheart love me so unconditionally makes me be braver and stronger.
What’s Your Essential?
And so, to stay grounded, I review what is my essential. Truly essential. For me: genuinely connecting with those I love, fortifying my health, soaking in nature, and living with purpose through my thoughts, words, and deeds are the essentials I need to live a FULL life which emanates love.
Here’s what I’m practicing daily to ground (helping to heal not only myself but the world around me):
Mediation: There are several free, on-line resources but this is one that I’m using by Jeff Warren (besides the 8-week course I’m still taking).
Zoom gatherings with family: We’re trying to do some normal things we’d do together albeit virtually. Yesterday, we had a coloring party. Tonight, we’re all going to have a bowl of ice cream as we chat.
Each of us sat at our tables and colored a picture while chatting away. It seemed almost like they were physically in the room.
Connecting: I’ve started phone dates with my mom-in-law and friends once a week. Also, created a way for my neighbors to help one another (by sharing shopping trips, info, and things like books, puzzles, and games).
Getting outside: so far, mostly for walks in the woods, but soon for yard clean-up, and today for a chilly kayak trip around the lake.
Getting projects and cleaning the house that have been neglected (even though I’ve been retired now for one year). Today-organize the game drawer:)
This may lead to a raucous game of Skip-Bo for Kelley and me😁
And so, while these are scary times, I’m choosing to focus on what’s essential to help me stay grounded. This is what’s important. This is what makes meaning. This is what heals. I feel that if we each do this, we can bring equilibrium to the worlds inside and outside of us.
Thank you to all the essential workers who are risking their own health to protect, feed, heal, supply, transport, and care. You are so appreciated for all that you are doing. Thank you to the employers, too, that have made plans to protect and care for their employees during this time.
What are your essentials? How are you staying grounded?
Thank you for visiting my blog today.
I am committing to posting once a week on Fridays.
However, as you know, my new normal means that sometimes
I have to listen to my body and am not able to follow through
It’s not fun to acknowledge when you are having “urine problems”. I find it to be one of the most silent and life inhibiting issues I face with FMS.
There are many, many co-occurring issues that can come with Fibromyalgia (FMS). Interstitial Cystitis (IC) is one of them that isn’t mentioned much in the FMS community. I was diagnosed with IC about 15 years ago, when I was 40. However, I believe I’ve had some level of IC for most of my life.
In the article Fibromyalgia and Related Conditionswritten by Dr. Daniel Clauw of UofM for the Symposium on Pain Medicine in 2015, he states, “Nearly all individuals eventually diagnosed with FM have several bouts of chronic pain in other regions of the body earlier in their life.” Among the long list of comorbid issues interstitial cystitis/painful bladder syndrome. He explains, “This disorder often begins in childhood or adolescence, and individuals who eventually go on to develop FM…”
I don’t have all of these symptoms and compared to some, my issues are moderate. However, its impact on my daily life and self-perception has been damaging.
As a child, I hated taking time out from life to use the bathroom. I prided myself on how long I could go without peeing. To do that, I didn’t drink much. Back then, there wasn’t talk about drinking water and certainly wasn’t a concern in my family. However, this penchant for not going to the bathroom, during my elementary years, combined with my people-pleasing ways would sometimes lead me to have accidents on my way home from school because I hadn’t wanted to miss anything that was going on in class.
As a teen and a female, I was acutely aware of my weight and body image. I always felt overweight and was conscious of what I put in my mouth. Back then I remember thinking and even saying that, “I rather eat my calories than drink them.” While this isn’t all that bad in theory, it didn’t mean I was drinking water. To me, water made me gag (I was that unused to drinking it). So, what it meant was that I didn’t really drink much at all. What I did do, though, was to eat a lot of fruit, mostly canned back then.
Then, I began my teaching life. My doctor at the time said that it was very common that teachers had urinary tract infections and bladder infections because they were infamous for not drinking water and not being able to go to the restroom as needed. At this time in my life, I went from UTI to antibiotics, to yeast infection, to UTI sometimes leading into a bladder infection, to antibiotics, to yeast infection,…over and over and over. There was a time when I found myself going to the doctor every couple of months. One odd thing, though, was often, the “infections” were found out to be false when the urine test was finally completed a few days after I had already started the antibiotics. At that point, the doctor would always tell me to finish them “just in case” which I dutifully did.
It wasn’t until I started having severe urgency and frequency (at this point I had finally learned that drinking water was important and had come to enjoy it) that led to a few embarrassing accidents at school that I went into an OBGYN doctor who also specialized in Interstitial Cystitis. At the age of 40, I was diagnosed with IC, after umpteen misdiagnosed infections.
As far back as I can remember, I had an aching in the area below my belly button. What made it feel better (and still does to a degree) is pressure and warmth. To my husband’s chagrin, I was the clingiest spooner at night (when I most noticed the aching). His cute booty provided the exact pressure and warmth to calm the ache and let me sleep. I didn’t know that ache was due to a problem with my bladder.
Been There. Done That
I’ve done all (multiple times) but the last line of treatment, and I am determined NOT to go there!
I was thrilled to get a diagnosis and find out that I was not having constant infections. I first was put on Elmiron for two years. This seemed to help with the pain at first; however, by the end of the two years, once I was off of it, I didn’t notice any difference. I was just used to the continuous dull ache in my bladder all the time. (I liken this pain to the ache women get when menstruating with bad flares feeling like my bladder was on fire.) Also, I was introduced toPrelief which is an OTC dietary supplement that removes acid from trigger foods. This does seem to help with pain to a degree. My urologist also suggested I take aloe vera. I’ve used Desert Harvest Super-Strength Aloe Vera Capsules, and these seemed to help some as well.
I have no affiliation or kickbacks for mentioning
any of the products in this post.
I am writing about my experiences only.
In addition to medication, I adjusted my diet as much as I could. I eliminated coffee (mostly due to the acid). There are some chicory and low acid coffees, but I have not found any locally. I have always been a semi bland eater due to acid reflux, so I have mostly stayed away from acidic fruits. However, with me being lactose intolerant (I could eat a piece of cheese and be cleared out for a colonoscopy), giving up all things tomatoes is nearly impossible. And I also refused to give up wine. These non-concessions are when I use Prelief.
You’ll note that most of the “good stuff” is on the avoid list😢
Besides, the pain, the frequency (especially in the morning) and urgency (which comes up strongly and seemingly out-of-the-blue) was the most embarrassing and difficult issue I had to contend with, especially at work. As a teacher, even when we are all having a break, students would invariably want to talk to me individually during this time. Some would even follow me to the bathroom, and I’d have to finally say, “Excuse me” and hedge my head towards the staff bathroom’s door, for them to realize I had to use the loo. I have used four types of prescription medication to alleviate frequency: Enablex, Tofranil, Myrbetriq, and Vesicare. These caused symptoms that were not fun: constipation, fatigue, dry mouth, dizziness, headaches, nausea just to name a few. And in the end, they didn’t really seem to make a huge difference which I only found out after I got the courage to stop taking them. For pain and the frequency/urgency issue, I have gone to four different pelvic-floor physical therapists. For someone who had planned what she would wear for her first delivery (for the 2nd, I knew better) and was too inhibited to get a massage from a stranger, this was really a step of desperation and a major lesson on not giving a damn. During my third stint of physical therapy, my urologist suggested botox injections at the trigger points in my bladder. This was an outpatient procedure that did involve me going under anesthesia. Sadly, I had no change in my symptoms. My last PT suspected I had a labrum tear in my left hip; she said that she had been finding a connection between IC and hip-labrum tears. She, then, referred me to a specialist who after an MRI verified that this was the case, so I had the surgery.
Insterstim is a device that sendselectrical stimulation to the sacral nerve, which is thought to normalize neural communication between the bladder and brain and between the bowel and brain.
Being, in the end, these did not make much of a difference in my IC symptoms, I went to see another urologist who suggested it was time to implant an Interstim which a device the size of a quarter. This surgery was outpatient with local anesthesia only. I have a one-inch scar near the top of my left glute and a smaller incision at the sacrum. This healed up easily and being I did it during spring break, I didn’t have to have any time off from work. There is a remote control that can change the level of stimulation delivered as well as change the program which determines the direction of the electrical pulse. I tell people, “It’s like a pacemaker for my bladder.” This implant seemed to really help for a bit over a year (I had it two years ago). However, I began to have site pain in my left glute and was having ongoing sharp pain in my left psoas which became convinced was coming from the electrical stimulation and my crazy Fibro-amplified nervous system. I chose to turn it to zero for about three months. During those months, with chiropractor adjustments, medical massage, and yoga, the sharp pain went away. I was set on getting it removed. However, after seeing my urologist, and hearing what the removal would be like (not as easy as the implant surgery), we came up with a retry. She reprogrammed the device and set me up with new physical therapy which I have just started.
Getting tired of having to know the whereabouts of every bathroom wherever I am.
And so, I am working on retraining my bladder which in the end is just like retraining my brain with an addition of a few exercises. My goal is to be able to comfortably go on upcoming hiking trips (in which restrooms are not readily available and dropping into a squat in the woods isn’t fun to do every hour.)
“Rabbit hole is a term used to refer to a bizarre, confusing, or nonsensical situation or environment, typically one from which it is difficult to extricate oneself.” lexico.com
Those of us with Fibromyalgia (and those treating us or living with us) quickly come to understand that it is a bizarre, confusing, nonsensical journey. I have pain where I am not hurt. One day it’ll hurt all on the left side of my body for no reason that I can identify and the next day it’s completely on my right side. I have energy one minute and feel like I’m wearing lead boots the next. I am so tired all day yet keep myself up and about until bedtime, and then at bedtime, I’m awake and clear-headed having no ability to fall asleep. We also learn that this bizarre journey is really one we must go on our own. There is not a one size fits all treatment for Fibromyalgia Syndrom (FMS). Slowly and not at all straight forward, I am finding my way out of the confusing, dark tunnels and into the light of being able to manage my symptoms. At the end of July 2019, I explained how I had gotten to the point of wanting to try medical marijuana to help me manage my FMS symptoms. I was just coming off of withdrawal from Cymbalta (one of the three FDA approved prescription drugs for treating FMS). If you haven’t read it, it would be good to read:Down the Rabbit Hole: Could Medical Marijuana Help?
Each container of 10-10mg gummies cost $16. I have no affiliation or kickbacks for mentioning these products. I am writing about my experiences only.
Just after getting a Michigan Medical Marijuana Permit (under the category of chronic pain), I decided to go to a local dispensary. My research on Leafly.com was helpful; however, the dispensary didn’t carry what I had thought would be the best to try as reviewed on their site. I knew I didn’t want to smoke or vape. So, I decided to go with Wana edibles (sour watermelon and sour blueberry). I was nervous about going to this new world of a cannabis dispensary and didn’t quite know what to expect. However, my nerves were calmed by the professional environment and the friendly people who worked there. I stressed that I didn’t want to feel “high” nor did I want to sit stoned on the couch craving munchies (all stereotypical ideas I’ve gotten from movies, etc). They steered me towards the two above edibles, one for day time use and one to help me fall and stay asleep. That first day, I decided to heed all the warnings to try just a bit, so I cut the “gummy” into halves. The directions say: Start with a low dose of 5-10mg (cut in half for 5mg). Wait at least an hour to feel the effect before consuming more product. Around 2pm in the afternoon, I ate the sour watermelon hybrid of sativa and indica half piece. The hybrid is supposed to give a more balanced effect. I was hoping for less pain and clear-headed energy. One hour later and beyond, I felt little difference besides a bit of light-headedness.
That night, I decided to take the sour blueberry which has indica strain (which helps with falling asleep). Because of the lack of noticeable effects, I took 10mg (so a whole piece) around 9:30 pm (so 7 hours after the first 5mg). From what I’ve researched, the effects of edibles stay in the system for 6-8 hours. So, possibly, I didn’t quite wait long enough for the other to be fully out of my system. Or, the indica THC just had more of an effect on me. I did fall asleep in short order. However, I woke up, around midnight (just about the time the THC would have been highest in my blood system), to a scary sensation. I felt like I was going to forget to breathe. It felt like I was just going to stop. Also, time felt out of whack. This disorienting feeling lasted for an hour or so and then I fell back to sleep. I hate feeling out of control. So, I put the gummies away and haven’t tried them again….yet.
Two Week Trial
At the beginning of February, I found the tincture I had also bought at that July hid in my nightstand drawer. It was recommended by the person working at the dispensary as well as leafly.com: Mary’s Remedy by Coltyn (CBD/THC 1:1 tincture) for pain relief and help with sleeping.
Mary’s 100mg CBD:100mg THC tincture creates the “entourage effect” and utilizes a unique terpene blend that has the potential to reduce inflammation and improve digestion. The Remedy 1:1 by Coltyn utilizes a graduated dropper for accurate dosing. Just 0.25mL constitutes a dose, and there are about 45 doses per bottle.
I took the .25mL sublingually (under the tongue) before bed for two weeks. I’ll be honest, the taste seemed like castor oil meets olive oil, so I quickly learned to wash it down with water. This resulted in a solid night of sleep each night (fell asleep fairly quickly and stayed asleep). Those of us with FMS and other chronic pain issues know that sleep can be one of the major things affected. As my physical therapist says, “Sleep is when the body heals.” So, loss of sleep compounds issues. I also noticed less pain during the morning times (amped up again in the afternoons) as well as generally clearer thinking. I did notice that if I took an additional dose in the afternoon (say by 1pm), I ended up getting a bit groggy. I didn’t try that out on a consistent basis, which I plan to yet do.
Results from my Informal Experiment
After the two weeks, I decided to not take it and note what changes I had. I ended up doing this for only three nights. That’s because I had three nights of little sleep. I took it the fourth night and slept soundly again. Positive:
Sleeping soundly. (By taking .25ml of Mary’s Remedy by Coltyn 1:1 at 9:30, I’ve been falling asleep about 10:30 and sleeping until 7:30. If I do wake up to pee, I have been able to roll back into bed and go to sleep.)
My head seems to be clearer during the day.
Less pain in the morning.
My overall mood is lighter.
If I take it during the morning or afternoon, I tend to get groggy. However, I didn’t try this consistently yet to notice if it was those harder days I took the extra, so the fatigue, weakness, foggy brain were already there, or was it from the chemicals of the CBD/TCH reacting with my body’s makeup?
It costs $45 a bottle ($1.00 a dose).
It’s not readily available in my area.
I did run out of the Mary’s Remedy by Coltyn, so I ended up getting a bottle of Mary’s full spectrum CBD tincture (tastes a bit of cinnamon) and Mary’s THC tincture (tastes lightly of lemon). Using the measuring droppers (the CBD tincture didn’t have a measuring dropper so I traded it with the original bottle’s dropper). I ended up taking .25mL of each before bed and am finding the effects to be the same. I have not yet tried it during the day, nor in the past few days felt I needed to.
Mary’s concentrated tincture is an easy way to add CBD to your daily wellness routine. With organic full-spectrum hemp extract with naturally occurring cannabidiol and THC, nutrient-dense sweet almond oil, hormone-balancing myrrh and the warmth of cinnamon oil, this soothing blend helps provide physical and mental relief. The Remedy packs 250 servings into just a half-ounce bottle, and each drop contains a 2mg dose of CBD. (Nut allergy)
Free of synthetic additives, Mary’s highly concentrated 1000mg THC tincture is made with high-quality, full-spectrum THC extract and comes in a lemon-lime flavor. Sublingual delivery of THC is easy to use, discreet and convenient. Only available in Michigan and California.
As I am not a doctor and at this point don’t have a doctor’s guidance on this (I’ve let all my doctors know I’m doing this but they haven’t weighed in at all with any advice), this is a report for how using cannabis has effected my Fibromyalgia symptoms.
Here are a few of the resources that I’ve used to help in my choices:
“If you’re trying to treat a situation involving pain, like chronic back pain, chronic joint pain, or recovering from a chronic illness, you may need a good bit more CBD, and the thing to do is titrate your dose up. Start with a lower dose of 10 to 15 milligrams, and increase it from there.”
“When taking edibles for the first time, start with a small dose and work your way up to a dose that produces the desired effect.” What are your thoughts or experiences with using cannabis for managing Fibromyalgia symptoms? I’m hoping now that cannabis has been legalized, that there will be more research about its uses as well as educated doctors for guidance.
Thank you for visiting my blog today.
I am committed to posting once a week on Fridays.
However, as you know, my new normal means that sometimes I have to listen to my body and am not able to follow through as planned.
Ever-present breast pain isn’t something that should be ignored. It’s taken me quite a while to even mention it. Partially, because I’ve always had it and didn’t think it was unusual and partially because, well, it’s embarrassing to talk about.
Since developing breasts at 13 years old, they have hurt. I’ve mostly ignored it, however, until this past month when this pain became a nagging nuisance. Breast pain is not something I’ve ever talked about with others except the time I got mastitis when breastfeeding and when I was weaning from breastfeeding. That pain was fevered, swollen, and excruciating.
About 10 years ago, I began to have localized, sharp pain in both of my armpits. This type of pain was new and had me worried. I brought it up to my OBGYN at the time. It was time for my annual physical, so she set me up with a mammography appointment with directions to get close to the chest wall and the armpit.
Up On Tippy Toes
As you can imagine, being someone with tender, lumpy breasts makes going to have a mammogram especially daunting. The technician, friendly but fierce, took her job seriously. She had me disrobe to my waste (none of this leaving the hospital green kimono over one shoulder for modesty-sake). She asked for me to raise my right arm up onto the cold metal of the machine while she guided what little breast flesh I have onto the even colder bottom plate of the X-ray machine. To do this, I literally had to stand on my tippy-toes. She bragged, “I’m very good at getting as close to the chest wall as possible.” With an uncomfortable laugh, I leaned in preparing for the paddle to be lowered, smashing my aching breast and pulling in as much of the skin from my underarm as possible. This process, with slightly adjusted angles, was done a few more times on either side.
Correctly aligned chaturanga dandasana.
The great news was, my greatest fear was calmed. The specialist my OBGYN had sent me to explained that I had tight muscles (we both surmised from my frequent and probably ill-aligned chaturanga dandasanas as I was heavily into fast-paced yoga at the time). I was given stretches for this area and sent on my way.
To this day, the pain has remained, despite the stretching. However, I now didn’t’ worry about it. My mammograms have been normal, so I just assumed this is how I am. Last year, I was told I had dense breasts and would be getting a more detailed mammogram from now on ( Tomosynthesis which takes more images in rapid slices to create a 3-D image).
Why Do I have Sore Breasts?
During perimenopause, I began to use the Estrogen patch and take progesterone each night. I did mention my sore, lumpy breast tissue, but this seemed to be a result of hormone replacement. However, I’ve been off from the patch for six months and am officially in post-menopause and the sore tissue remains. In addition, my ribs and sternum are now sore to the touch.
This Monday, I went for a medical massage (I’m doing this every four weeks or so). Claire did some semi-uncomfortable stretches, massaging the rib area and under my armpit and under my breasts. She also did a bit of a rolling massage (this involves a bit of pulling up of the skin with thumb and pointer finger and rolling it in a direction). It wasn’t pleasant, but it was bearable. She then showed me how to help the lymphatic system drain through gentle self-massage.
Pain GONE! (For two days)
I was surprised to realize the next day, that I had absolutely no aching in my breasts and less pain in my ribs. This lasted a couple of days and still is less than last week five days after the massage.
FMS (Fibromyalgia Syndrome) Connection
And so, I’ve gone on a research binge on what might be happening. In a study titled “Can mastalgia be another somatic symptom in fibromyalgia syndrome?” and published in the journal Clinics found that, “…coexistence of mastalgia and FMS is more frequent than previously estimated, suggesting that these two disorders could share some unknown common mechanisms in their etiopathogenesis. Additionally, mastalgia could be a part of central sensitivity syndrome and could be included among the somatic symptoms in the fibromyalgia criteria based on its high prevalence in patients with FMS. Therefore, patients with FMS should also be asked about the presence of mastalgia during routine examinations.”
Within the article explaining the study, the researchers state, “While mastalgia is a sign of an organic breast disease, it also has a possible psychological background that is not fully understood. In addition, mastalgia is known to be strongly associated with high-stress levels.”
Shouldn’t Be Surprised
I’m finding that the more I learn about FMS, the more I find that the issues I’ve been dealing with for most of my life are connected. And in some ways, this brings me peace and hope. I feel that I am working on ONE thing (calming my nervous system through brain retraining) rather than putting out several different fires.
The massage included in this video is close to the one my medical massage therapist suggested, although she told me to do it in the shower with a washcloth. I’ve read using oils like the one suggested here or even coconut or olive oil is good.
Lymphatic Breast Massage
Taking Care of the Girls
Because I am post-menopausal, have dense, lumpy breast tissues with non-cyclic breast pain, I need to take extra care of my breasts. To do this, first, I’m going to talk about it with my doctors more regularly and share what I have learned. I will have the 3-D Mammogram done, yearly and continue to do self-breast exams. To help with the pain, I will do the lymphatic breast massage, breathwork, and continue to get medical-massage.
Here are a few helpful resources I found as I did my research: