Normal Life is a Luxury

Normal Life is a Luxury

I’ve spent a lifetime in pursuit of a normal life. Try as I might, it’s nearly always just out of reach. That’s what happens when you have multiple chronic illnesses. They take up so much room that normal, everyday things get pushed aside. On rare occasions, I get to enjoy small servings of normal. Each one is a precious luxury that is never taken for granted. My revised goal is simply to achieve ONE normal activity every day. When it happens, I bask in the glow, cherishing each moment that resembles a normal life.

Many would give anything for just a small taste of normalcy. We dream of a hum drum life filled with dinners, dishes, car pools, rush hour traffic, and the million other things that make up the average person’s day. When disease and illness chip away at your ability to engage in everyday activities, you have a choice. You can wallow in the misery of your lot in life or you can fight like hell to hold on to what little sense of normalcy remains.  I choose to fight and then celebrate every small victory as if I had just climbed Mount Everest. In truth, many everyday activities do feel like I’m climbing a mountain.

It is a luxury to be able to cook your own food, wash your own dishes, and do your own laundry. I stopped seeing them as unsavory chores a long time ago. On those infrequent days when I am able to care for myself and others, unpleasant chores become luxurious opportunities. When “must do” transforms into “can’t do” your whole outlook on life changes. Those rare “can do” moments are met with enthusiastic excitement. Almost any activity can be a sweet, satisfying luxury when you are denied the privilege. Never take those routine, everyday activities for granted.

Product Review – Fay Farm Rejuvenation Lotion

Product Review – Fay Farm Rejuvenation Lotion

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


rejevnation_lotinFirst Impressions

The first thing I noticed was that Rejuvenation Lotion absorbed quickly without leaving behind a sticky or greasy residue. It also has a mild, natural scent, void of any perfumes, chemicals, or even a strong essential oil odor. Migraine patients with sensitivity to smells will appreciate this for two reasons:

  1. Avoiding a known trigger – Perfumes and other strong smells can be a trigger that sets off a migraine attack.
  2. Minimizing the impact of osmophobia – Some of us experience extreme sensitivity to smells during a migraine attack such that even a slight whiff can set off a cascade of nausea, vomiting, and worsening pain.

Testing…1…2…3

Muscle strain

Shortly before Rejuvenation Lotion arrived, I strained my upper right back muscle. It was painful and limited the range of motion in my right arm. A few years ago I was treated for “frozen shoulder syndrome” and the symptoms were similar this time. I really didn’t want to go through another 20-week round of myofascial release therapy if I could avoid it. It’s a long and expensive recovery. So, I though I would give the lotion a try just to see if it could help the muscle heal.

However, I couldn’t reach that tricky spot between my spine and shoulder-blade that was the source of the problem. It would have been difficult on a good day, but with limited mobility, there was no way I could reach the middle of my back alone. As luck would have it, my husband was out of town for 2 weeks on a rare business trip. Testing the lotion out on this problem was going to have to wait.

Arthritis

So I turned my focus to the reason I wanted to try it in the first place — my arthritic knee. I’ll admit that I wasn’t all that consistent in using Rejuvenation Lotion. This summer has been busy enough to challenge my commitment to maintaining a routine. Despite my erratic use, I was surprised when my last cross-country advocacy trip didn’t require much use of my cane.

To my amazement, I was able to walk around the airport terminals in both Kansas City and Philadelphia without much pain at all.  I did avoid the stairs and adjust to a slower walking pace, but only needed my cane for a brief time on arrival in Philly. Normally, such an adventure would require not only a cane, but the assistance of a wheelchair, too. I didn’t need any special assistance with boarding either. It was almost disappointing (yet exciting!) to be treated like a regular passenger by standing in line forever and being the last to board the plane. My knee held up!

Edema

It is has become a foregone conclusion that my lower legs and feet will swell up for several days after such a trip. Yet for this trip, I didn’t have that problem at all. I only did two things differently this time: 1) I used Rejuvenation Lotion several times each day during and after the trip, 2) I also took a Celery Seed supplement to act as a mild diuretic. There’s no way to tell which made the difference. Given the positive results, I’m not likely to skip one or the other the next time.

Back pain

Lower back pain has been a thorn in my side for ages. I haven’t yet tried the lotion daily as a preventive, but I have applied it when my back flares up. It seems to do as well as any other pain relieving ointment or lotion I’ve used. The only other product to come close is Tiger Balm, which unfortunately has the side effect of leaving red marks where ever it is applied in sufficient quantity to dull the pain. Rejuvenation Lotion leaves no red marks, strong smells, or greasy feeling.

What about the first problem?

After my husband returned, we set to work on the muscle strain that was crimping my writing style. He volunteered (…okay, I drafted him) to help me apply it to the source of the problem.  This was the most dramatic use of Rejuvenation Lotion so far. Within minutes the pain was almost gone. With continued daily application, the pain disappeared and my range of motion gradually returned. Because I know this a weak area, I will be continuing to use to strengthen and help it heal further.

…and as a bonus, my husband didn’t complain about the smell or feel of the lotion!

Assessment

Rejuvenation Lotion is a keeper for my toolkit. It’s smooth, non-greasy feel is a boon for my sensory-challenged family. It’s not a pharmaceutical painkiller that might increase our risk of medication overuse headache, either. Plus, it actually relieves and prevents our musculoskeletal pain. Fay Farm’s Rejuvenation Lotion has the official Brain Storm “seal of approval.”

Want to know more?

Rejuvenation Lotion contains 200mg cannabidiol derived from hemp oil. It contains no THC and is legal in all 50 states. It is not psychoactive or addictive in any way — you won’t get “high” using it. Fay Farm describes it as

…a blend of herbs and essential oils designed to relieve joint and muscle pain. Use our Rejuvenation Lotion when applying to areas that need to be absorbed quickly, like hips, knees, shoulders, etc. 

According to the description on their website, it contains:

Notes of vanilla from peru balsam essential oil complimented with a delicious top note of camphor makes for a mild, almost decadent aroma.  Made with organic ingredients: Purified water, hemp oil, grape seed oil, apricot kernel oil, emulsifying wax, stearic acid, argan oil, magnesium, white sesame oil, jojoba oil, essential oils, 200 mg. CBD oil, fennel, licorice, turmeric, valerian, gluconolactone and sodium benzoate (certified organic preservative).

You can learn more by visiting Fay Farm, checking out their Facebook page, or following them on Twitter @TheFayFarm.

Would you like to try it?

Brain Storm readers can save 10% off your first order, plus FREE shipping! Just mention discount code “storm” when placing your first order.

Inspiration Through Pain

Inspiration Through Pain

In addition to Migraine, I have also been diagnosed with Cluster Headache and Fibromyalgia. So basically, I am in pain every single hour of every single day.  There are few good treatments and no cure for any of these diseases. I may have good management of one problem only to have another one flare up. It is exhausting to live in this body.

Today was a particularly rough day.

A few days ago, the right side of my latissiumus dorsi (back muscle) became irritated, causing muscle spasms across the entire right side of my back, spreading into my neck, shoulder, and right arm. Painful is putting in mildly. I am used to working through pain, adjusting my activity level, and managing expectations. So the pain itself didn’t really get me down, but the medicines I needed were a problem. They were too sedating to permit clear thinking, but not strong enough to prevent pain from disrupting my sleep. Sleep deprived, experiencing pain levels at about an 8 on a 10-point scale, and with limited mobility I struggled to find a comfortable position all night and day.

Obviously, I wasn’t in good shape to be writing.

So it’s now dark outside and the rest of the world is preparing for sleep. All those meds are finally wearing off. A TENS unit and heating pad are working well to keep the pain down to a dull roar (about 6/10). With a functional level of pain and a clear head, I started thinking about today’s suggestion to write about inspiration. While my first ideas were okay, I’d written about them quite a bit and didn’t think I had anything new to say on those subjects. So I surfed the web, checking Facebook and Twitter, making small (and mindless) adjustments to my website, and chatted a few times over the phone with my husband who is traveling for work today.

Without any effort, inspiration appeared.

I’d been listening to Pandora for about an hour when a new song started playing. The lyrics intrigued me, so I looked it up on YouTube. That’s when I realized I’d found my inspiration for today in Superheroes by The Script.

Certain lyrics stood out…

Turn the pain into power…That’s me all right. It’s how I’ve survived to tell my story.
When you’ve been fighting for it all your life…I can’t remember a time when I wasn’t fighting all this pain.

That’s how a superhero learns to fly….Other people see this in me, but all I see is a girl just trying to survive.

She’s got lions in her heart
A fire in her soul
‘Cause they’ve taken too much hits
Taking blow by blow
Now light a match, stand back, watch them explode

Yeah, I guess that is me.

A few days ago I accompanied a friend to the ER. She was dealing with an out-of-control migraine attack and had been treated poorly the last time she needed help at the ER. She was worried and needed a friend to stand up for her. I was happy to help and itching for a fight if she wasn’t cared for properly.

While I was gone, my daughter noticed my unusual absence and asked my husband, “Where’s mom?”

He replied, “At the ER with a friend who’s having a bad migraine.”

“Is the building still standing?” she chuckled.

Her dad laughed with her, “That depends on whether the doctors do what your mom says.”

Yes, I am that fierce.

There are lions in my heart and a fire in my soul.

I dare you to light a match.


This article is part of the July 2016 Ultimate Blog Challenge

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Self-care rules the day

Self-care rules the day

Yes…I remember that it’s Migraine and Headache Awareness Month.

Yes…I realize you’ve come to expect a new blog post each day every June.

My body had other ideas.

After a whirlwind trip to San Diego, my body rebelled. For a few days I clawed my way through like I’ve always done. Then one afternoon, without any warning, my laptop shut down on its own, never to return. I’d pushed it so hard that even my technology gave out.

Damn the torpedoes, full steam ahead!

A few hours of panic followed by a few more hours of problem-solving with my personal IT guy (i.e. husband) and I had a plan. Completely ignoring the billboard-size warnings in flashing neon lights, I charged forward. It was gracious of my husband to let me borrow his computer, but doing so enabled my workaholism. With the latest cluster cycle ending and migraine strangely absent, there was now very little that would slow me down.

Enter, the flare.

While Migraine and Cluster Headache may have been asleep at the wheel, Fibromyalgia was not about to put up with my reckless behavior. Without access to portable technology (my trusty, but now defunct, laptop), I was forced to walk away from work (now a stationary, very heavy desktop computer) when my body gave out. My hands and feet were swollen, every muscle in my body was screaming, and my internal thermostat couldn’t decide if it was summer or winter.

After nearly a week, I finally started to feel more like myself. Feeling daring, I would sit down at the new-to-me computer only to walk away moments later. It wasn’t writer’s block — ideas were flowing freely. I’d simply lost my motivation. Burnout was creeping in. A self-care break was desperately needed if I were going to write another word before Independence Day.

Finally, I got the message.

For the past three days I have done everything except write.

  • vacuumed the living room carpet and spot treated a few random stains
  • dusted and polished the TV stand
  • made progress on painting the entryway walls
  • polished the banister
  • sanded and stained the worn-out built-in desk in the kitchen
  • ran a few loads of dishes
  • cleaned the clutter off my kitchen table and countertops
  • reassembled my granddaughter’s Minnie Mouse electric scooter
  • mopped the hardwood floors in the entryway
  • enjoyed a Star Trek marathon…just finished Insurrection last night
  • ate when I was hungry
  • slept when I felt tired
  • called my daddy on Father’s Day
  • chatted with hubby to keep him company on his road trip for work
  • rescued granddaughter’s dinner by adding the desired PB&J sandwich that mommy didn’t make fast enough

Why all the cleaning? Well, when I get stressed out, I clean. It’s not work; it’s self-care. It may all sound like work to you, but to me it was relaxing fun…especially the polishing, staining, and painting. For the first time in months, my kitchen desktop is clear and beautiful. The walls around it have a fresh coat of paint. A light taupe replaces the dark “Army green” and now I can’t wait to make the whole kitchen brighter.

There wasn’t a single migraine or cluster attack to contend with all weekend, so I allowed myself the luxury of avoiding the topic entirely. Now I feel refreshed and motivated to finish the month strong.

Have I learned my lesson?

Probably not. At least I will make an effort to stay balanced for a few days. Who knows? Maybe this time the lesson will stick.

 

Ruling comorbidities, side effects, and stigma

Ruling comorbidities, side effects, and stigma

Part of ruling my headache disorders is that I make sure not to run out of any medications. This is critically important when planning a trip out of town. The last thing I want is a trip to an emergency room in a strange town far away from my own doctor all because I forgot to pick up a $10 bottle of medicine. So Friday afternoon, I paid a final visit to the pharmacy to pick up the most vital medicine in my arsenal. It had been special ordered, arriving just in time.

Because I have comorbid fibromyalgia and arthritis, pain on some level is my constant companion. I receive cortisone injections to manage my knee pain and I never know when they will wear off. In a sick twist of fate, the most recent round wore off just a few days ago. I have an appointment for another injection next week. In the meantime, I limp around the house, use a cane when walking to and from the car or up and down stairs. Where available, I use store-provided electric shopping carts. My afternoon trip to the pharmacy was no exception.

Because my pharmacy is located inside a “big box” store, I was also able to do some last-minute shopping. As I maneuvered my way down the aisles, I remembered something I’ve heard other people say when they see someone like me using one of these carts.

“Maybe she wouldn’t need to use that cart if she would put down the cupcake, get up off her fat butt, and move for a change.”

You’ve probably heard something similar, too. The comment assumes that people who are overweight have only themselves to blame for the (assumed) consequences. But that’s rarely the way it happens. More often (as is my case),  an injury or illness results in pain and limited mobility. In an effort to resolve the problem, a doctor prescribes one or more medications to reduce the severity and frequency of pain. I’m not talking about narcotics or opioids.

More often the culprits are medicines like Neurontin (gabapentin), Lyrica (pregabalin), Cymbalta (duloxetine), or Savella (milnacipran). Every one of these medicines was created to help reduce the frequency and severity of musculokeletal and neuropathic pain (such as occurs in fibromyalgia). Every single one of them has some unpleasant side effects, the worst of which is excessive weight gain. To make matters worse, none of these medicines has a very good track record of actually preventing pain.

So, like so many people living with fibromyalgia, I take my medicine, gain weight, try to exercise, feel more pain, take more medicine…and all I have to show for it is ever-increasing readout on my scale.

“You’d feel better if you lost some of that weight.”

No kidding. Now why didn’t I think of that? What do you think I am trying to do? Friday was just a particularly bad day. Getting out of the house was a major challenge all by itself. I won’t apologize for doing what was best for me in that moment. I needed extra help so I used all my available tools, including the electric shopping cart at Target.

Ruling my headache disorders means ruling my comorbid conditions, too. Much to my dismay, the cost of doing this has packed on more pounds than I am comfortable divulging online. If I could special-order my next preventive, I would have only one request..

Give me any side effect EXCEPT for weight gain, please!

Betrayed by my own body

Betrayed by my own body

Migraine has had a destructive hold on my entire life for as long as I can remember. I’ve spent the better part of my life trying to find ways to loosen is iron grip. Almost three years ago, I finally discovered a path that led me on that long-awaited journey. Today I enjoy better migraine management than ever before.

Sixteen years ago I was also diagnosed with cluster headaches. The excruciating pain complicated my already tenuous migraine management, drove me into a deep depression, and caused me to question nearly everything I ever believed. Over time I learned to cope, but never really experienced good control until three years ago. The same series of events that led to better migraine management also tamed the cluster headaches.

Four years ago I started experiencing new symptoms that made me feel as if I were twice my age. Every move I made was painful. Resting was even worse. I couldn’t find a single body position or movement that did not trigger pain. I felt as though all my muscles had locked up and migraine has spread throughout my body. I struggled for two years before finally getting a diagnosis…fibromyalgia.

I should have been relieved to finally have my suspicions confirmed. Yet the victory was hollow. Preventive treatments were only moderately successful. Even exercise proved to be both helpful and harmful. All of a sudden I could not sleep, despite regular use of my CPAP which had been working for years.

I felt betrayed. All those new migraine-free days were still being wasted because the pain had spread all over. The trade-off was not fair. Despite improvement in one area, I still had poor quality of life. I wasn’t the only one frustrated by this turn of events. My husband routinely complained that I was no better off. He began to resent my reports of reduced migraine attacks because the lack of migraine really made no difference. In many ways I was much worse off — more isolated, irritable, and incurable.

It has taken me quite awhile to come to terms with this new challenge and even longer to figure out how best to deal with it. It would be nice if I could tell you that I am feeling better with fewer symptoms, but that would be a lie. It’s been three days since I was functional enough to leave the house. Now that the rest of my body has been lowered to a dull roar, a migraine has appeared to slow down my day.

I’ve been betrayed by my body.

This post is in honor of Fibromyalgia Awareness Day, May 12, 2016.

Falling off the wagon

Falling off the wagon

Have you ever struggled to stay compliant with an effective treatment? Sometimes side effects can derail even the best of intentions.  At other times, the treatment is so effective that we feel so great that we forget to stay consistent. By the time we realize that we’ve gotten off track,  we’ve established habits that make it difficult to return to treatment.


About a year ago, the constant coughing of pneumonia disrupted my sleep and made it impossible to wear my CPAP mask. For a few months, I was only able to sleep in a recliner. Once I recovered, my lungs and sinuses were still so sensitive that using my CPAP was like starting all over again. In addition, my husband started exhibiting symptoms of obstructive sleep apnea that kept me awake. Every night that I tried to use my CPAP I would sleep for 3-4 hours only to wake with sinus pain.

After months of struggling with poor results and stubborn insomnia, I finally reached out for help. The same neurologist that administers my Botox injections also specializes in sleep disorders. So when I asked about it, he agreed to take me on as a sleep patient, too. At our first appointment he recommended trying an auto-pap machine with tracking technology that would send daily reports of my CPAP use to him and me.

Although the new APAP was a significant improvement, I still struggled with insomnia and sinus pain. We tried a few medications to treat the insomnia without success. We also increased the humidity on the machine to ease the sinus irritation. I was finally able to sleep, but not in the same room as my husband. His symptoms (snoring, tossing & turning) were keeping me awake. I even tried sensory depravation by using noise-cancelling headphones, white noise, and an eye mask. All of these measures helped, but created new problems — I couldn’t really get comfortable with all that stuff on my head and face. So I gave up and moved back to the recliner.

After several weeks of consistent APAP use while sleeping in the recliner, it finally occurred to me that using a foam wedge to raise my head, neck, and shoulders might make it possible to sleep in bed once again. The same day that my husband picked up his new APAP machine, I purchased a wedge.

That first night was a success. I was not awakened by snoring because my husband was able to use his APAP. Plus, I had just the right combination of heat, humidity, and elevation to prevent any sinus irritation. For the first time in months, I was able to get a little over 8 hours of healthy, comfortable sleep.

I promised my doctor I would not give up on CPAP treatment. I know the benefits and desperately wanted to be able to sleep well again. It’s been about a year since I first fell off the CPAP wagon. I’ve been clawing my way back on and falling off over and over. Most people would have given up long ago. I seriously thought about it. But quitting is not in my nature. I guess I’m just too stubborn. With all the new changes, I am hopeful that next month’s appointment will yield improved results.


If you are struggling to continue a helpful treatment because of side effects or complications, please don’t give up. Keep trying new strategies. Talk to your doctor, too. He or she may be able to suggest ideas you haven’t thought of or adjust your treatment to make it easier to stick with. Whatever you do, keep trying until you find a solution that works.

The secret cost of chronic pain

The secret cost of chronic pain

I recently saw photos of a friend who has been going through some very serious medical challenges. The physical transformation caused by the medical treatments was unbelievable. She doesn’t even look like the same person. We became “sisters” via social media, so my love and concern for her has never been based on her appearance. I know that I don’t think differently of her. Yet my heart aches for the loss she must be feeling.

Waking up every morning to see a stranger in the mirror is something I struggle with, too. It is hard to accept that the person I see is really me. In my head, I still look like the photo on the left. Yet the mirror says that after 41 years of migraine, I really look like the photo on the right.

June 1990

Young, skinny, beautiful me wasn’t nearly as healthy as she looks.  At the time that photo was taken, I was in the middle of Chronic Migraine complicated by Medication Overuse Headaches and Cervicogenic Headaches due to neck damage from multiple car accidents. Undiagnosed for decades, symptoms of fibromyalgia and the early signs of osteoarthritis had already been creeping in.

January 2016

The second photo was taken just a few days ago on a really good day. I had just received my 5th round of Botox injections two days earlier and it was starting to kick in. There were no migraine attacks to spoil that beautiful day. It was 60 degrees and sunny in the middle of January. I spent the day cleaning up the garage and enjoying visits from both of my adult kids. Except for some low back pain late in the afternoon, I felt great. It was nice to feel productive and useful for once.

It isn’t just the weight gain brought on by years of inactivity plus countless rounds of prednisone, antidepressants, anticonvulsants, and blood pressure drugs. The change goes deeper. You can see it on my face. Living with pain has changed facial expressions, my skin tone, my posture, and so much more. In both photos, I am smiling, happy, and feeling good about myself and my life. Frankly, I understand and like myself a whole lot more now than I ever did in my 20s. Still, there is no denying that living with chronic pain has changed my appearance in ways I would prefer others not to see.

So why publish these photos online for the whole world to see?

I’m taking a chance that I am not the only one with this experience. Some might think that I’ve “let myself go.” That is simply not true. I’m not lazy and I don’t overeat. I am as active as my body will allow. I drink lots of water and take herbs, vitamins, and minerals. I juice, too. None of that ever changed the frequency or severity of my pain. Thanks to Botox, I have even been able to wean off most prescription medications. Where once I swallowed over 20 pills a day, I now take only two…and neither are for migraine. I do still have a few PRN prescriptions that help to manage symptom flare-ups. I rely most frequently on a weekly dose of triptan to abort the few migraine attacks I still experience.

For 41 years I have been telling myself that I will do more and do better if I can just get these migraine attacks under control. Now that day has finally come. Yet I have discovered that my body will not do the things I dreamed of doing. When you are forced (for decades) into bed for days at a time due to unbelievable pain, getting exercise is hard to do. It’s as though I have been dreaming for over 40 years and suddenly woke up from that nightmare, wondering, “What the hell happened to my body?”

Regardless of how it happened, I am now living in a body that I do not want. I didn’t create this problem intentionally by abuse or careless neglect, yet I am the only one who can change it. I don’t know what will happen on this journey. All I know is that I have to try.

Goal setting for chronic illness

Goal setting for chronic illness

goalsMany people start the new year by reflecting on the past and setting goals for the future. While not a big fan of “resolutions” I do see the value in taking time out to assess progress and fine-tune goals. This process can be challenging for those who face a chronic, incurable illness. After all, “getting healthy” isn’t exactly a goal that we can accomplish. As much as we would love to be free of all this pain, that isn’t going to happen-.

To stubbornly cling to just that one wish for a cure, refusing to compromise is self-sabotaging. It freezes us in time, slowing the progress of our personal growth. Worst of all, it robs us of the potential for a satisfying life.

So what can we do? Even if a cure is not available, there are many things about life with chronic illness that can improve. The key is to strive for living as well as possible in all areas of life. Find creative ways to improve your quality of life.

Health care

Is there something about your current treatment plan you’d like to change? Maybe it’s better symptom control, fewer side effects, or even something as big as finding a new doctor. What about sleep habits, diet, or activity level. You don’t have to do everything. Just pick the one or two things that matter most.

Family life

Many times it’s easy to say, “I can’t” because of your illness. Look for ways to accommodate your health care needs so that you can say “I can” more often. Don’t let your illness keep you from spending quality time with your loved ones.

Profession

Are you still able to work? Do you need to explore workplace accommodations, FLMA, or some other flexible work arrangement? Is short-term,  long-term, or permanent disability in your future? Do your homework so you can understand all your options before you need them.

Personal growth

Is there a hobby you’ve been missing out on? Try to find creative ways to enjoy it again. What about learning a new skill or volunteering? Maybe join a support group or start blogging. Find ways to learn and grow from your experience with chronic illness.

Spirituality

Chronic illness can force us to question our beliefs. The long hours of isolation can separate us from our faith community. Try to find ways to stay connected. Re-evaluating our beliefs is sometimes necessary. The results can produce a deeper connection to God and others.