I knew my feline boss Joy liked being held and cuddled! I was right all these years! Today verified it.
I get tired of so many webinars, but they are the best learning right now to figure out how to help small businesses in this intense time. Joy thinks webinars are most excellent because my arms are free to hold her. She paws my leg and waits until I pick her up. Then we snuggle until I need my hands again.
It’s so cool to have a soft, fluffy boss who purrs! It makes the craziness tolerable.
Friday was a rather frustrating day. I woke with a migraine, needed to work all day, mom tossed in a trip to her doctor’s office, and I needed to restock groceries.
When I got up, I felt miserable. This migraine was on the right side and about a 5 out of 10. Fortunately, my right side migraines tend to be less severe than the left, so I figured I could get through it. I did the usual morning routine, well the one for the new environment of COVID-19. I got coffee and went to work in the home office. I came out for a minute, and mom said she wasn’t feeling good. Eventually, this led to cancelling one appointment and rushing her to her doctor’s office for lab work immediately at 4:30 when I got out of work. The doctor wanted to know if her kidney infection had improved or not. It’s more than 24 hours later, and we don’t know, but she was better today. So, yeah!
I made it through the work day, and it’s demanding being that we assist local businesses in how to sell their products/services to the local, state, and federal government. Clearly, there are certain things that are in extreme demand. My job is to help guide them in the right direction. There was a lot of guiding through email and phone calls. We also must get out what events have been cancelled, postponed, or are now virtual. That is a freaking long list. Never mind we also need to get our clients information about their resources during this pandemic. Getting info out ASAP is vital right now.
Once I made it through the work day, got mom to and from the doctor for testing, I had to go shopping. There were a few things I’ve found I need for the home office – most important is a clock. There’s never been a clock in that room, but now I need one. I had already hung the calandar from the office, so I’ve started getting my mental north star with date, now to get it with time. But also … groceries.
I really, really, really didn’t want to go to my local Meijer because of murder lights. They are remodeling the entire store, and moving one section at a time. It’s a freaking nightmare. Oh, and installing super crazy bad bright lights. I have to wear my sunglasses in the portions of the store where they have installed them. I keep asking at the return/lottery desk what they are going to do about these horrific lights, and they don’t seem to get my urgency or pain. So, sunglasses.
Crazy me, I thought I could go to Hardings instead. Ummmm…. not so great. They are re-arranging things too! There needs to be a law that grocery stores within 10 miles of one another cannot re-arrange their store items within one full year of each other. Come on, people! Change is hard, but when it comes to finding food, that’s so much harder because it’s not an optional activity. That includes pet food, which Meijer has now moved twice into entirely different parts of the store. The current location appears to be long-term, but I still have a panicky fears that they will move it yet again. I just want cat treats, people!
At Harding’s, I have no idea how many times I went back and forth trying to find ONLY the things on my list. Normally, I am susceptible to picking up other things here and there – maybe I want fruit, but I also see the garlic artisan bread nearby, so that jumps into my basket, or I need soup, but they also have gravy and tuna in that aisle, so they find their way onto the checkout counter. I am the dog who sees a squirrel and forgets to eat my treat or that I had to pee with urgency. Any which way, not last night. I understand the beef and toilet paper (okay, I don’t understand that) and cleaning products being completely wiped out, but sausage? No! Harding’s had NO sausage in site! My plan for tonight was spaghetti, and hamburger will not do. Spaghetti calls for sausage.
So on to Meijer, with the murder lights and an active migraine. Let’s just say that FUN it was NOT. Now they are moving into the grocery department for their remodel, and there’s no more deli, and the plants and flowers are now near the grocery. Soup is on the list of things that are short at Meijer and Harding’s. Mom and I love Campbell’s Tomato Soup with grilled cheese sandwiches. Many things we are not brand specific about, but Campbell’s soup is a must for us. Harding’s only had family size, and Meijer didn’t even have off brand tomato soup available. It took me over half an hour to find the remaining 4 things on my list that Meijer did have. That’s around 7.5 minutes per thing!
And then there’s the checkout lines at Meijer (much better at Harding’s). Hmmm… let’s just have 5 open to a store full of people who now have a limited time to shop. But, at the same time, I get it. How many employees of each grocery store have to stay home because they are or live with someone who is more susceptible to Coronavirus? For all I know, that’s why there were so few cashiers. The store is now closing at 10 p.m. so they can sanitize and restock as much as possible before they re-open. I am frustrated by this, and I am grateful for this. We are talking about saving lives from COVID-19, so that has to take precedence, no matter the economic havoc we’re experiencing. I think I’d rather be alive to experience the recession/depression that will follow this disease rather than to not see it at all – at least that’s how I feel today, even with a migraine.
So mission accomplished, I got to go home. My brother was there with not so good news, so I’m glad mom and I could bring him some good cheer and have him over tonight for a spaghetti dinner. A good friend died recently, and he only found out an hour before the funeral, so he missed the funeral. His friend had cheated death probably more than the suggested nine lives of a cat, and we are grateful for all of the extra years he did have. But that doesn’t take the sting away now that he’s gone. Keeping his family and friends in prayer as they learn this new world without him.
Today went better. Slept in. Napped. Cleaned. Made a nice dinner for my mom and brother. Watched “Caddyshack”. Pet some kitties. And, my migraine has finally taken it’s leave this evening. My head is finally in a better place. No nausea, no dizziness, less ear ringing, and the aches and pains are completely gone.
Tomorrow will be a better day. I am looking forward to our virtual church service in the morning. As a bonus, no church in person means we don’t have to bring goodies for coffee hour! Okay, I shouldn’t be geeked about this, but I am. We do it because so many others do it, and we want to give back. Giving back doesn’t always mean in the ways that make yourself happy. but I’m happy not to have to get up at the crack of stupid to get to church to make coffee. I can get up at a reasonable time and enjoy the service in my PJ’s. Maybe even pet a kitty at the same time. (So long as she doesn’t mess with my touch screen computer and end the service early for us.)
I pray you take extra care in this crazy time in the world. Everyone everywhere is held in prayer for love and hope in every way.
Oh, and please wash your hands, sneeze into a tissue, and sanitize your cell phone. I want you here tomorrow and next year too.
The longest week. The first two days were in the office. These last three were at home. I foolishly thought without the drive time that I would be less tired. Nope. Barely out of work Wednesday & Thursday evenings: face planted on the couch for 2.5 hours both nights.
Then again, there is ZERO normal about this. This work at home was fairly spur of the moment, considering the company has been working for months to create a Work From Home plan. Well, with COVID-19, it got moved up. Big time. There’s more to do than usual with all of the government opportunities and events changing every few hours.
There was an article sent around that first day about how important it is to get up at the usual time, shower, dress for work, and blah, blah, blah. Ummm… NO! If I’m going to enjoy the benefits of Work From Home, I’m going to do it in my PJs, waking up 1/2 hour before I need my fanny planted in the seat from 8:00 a.m. to 4:30 p.m., brush my teeth, feed the cats, find a bra for the day, and then planting that fanny.
Lunch? I’m taking one alright … to make sure my mom and I eat. When I’m at work, mom sometimes has lunch at 3:30 in the afternoon. Then she’s – surprise! – not hungry for dinner. Well, this way, we can have lunch before 2 and enjoy a leisurely dinner at night too! Ummm… if I manage to figure out how to stay awake after 5:05 p.m. So, that dinner is a little later. At least she’s eating no less than two meals a day. But as soon as lunch is made, I go right back to work and eat mine at my desk while catching up on the 20 emails that came in during the 20 minutes I took to make lunch
Breakfast you ask? Not A Morning Person. If you know people who are not morning people, then you know what I mean. Breakfast is something somewhat breakfasty around 10 a.m. Usually a bar or quick oatmeal or cream of wheat. With fresh fruit if I have some easily available. Something under 250 calories. In part, because if I have a coffee, that will have 250 calories (usually at the least). I like my coffee doctored with sweetener and creamer. I count those calories too, so breakfast, if coffee is needed (only with migraine) is around 500 calories. If it’s super good coffee, then over ice will suffice. And I can keep my usual 250 calorie morning.
I may need to create my colleague Joy her own desk. She is a bit too into my touch screen and prancing about like she bought the wireless keyboard with her good looks, silky fur, and randomly sweet attitude. Granted, she has two perfectly good working spots, but she wants to be closer than those cushy areas. Some office mates just don’t know how good they have it … or maybe they do because they demand it.
I have a 2nd supervisor. Her name is Joy. My new ninja spy colleagues are Poppy, Willow, and Merry.
I thought I’d had supervisors before who micro managed my work. Oye, I had no idea how bad it could get. Joy had her face in my work all morning. She tried to drink my water, rubbed her head on my monitor, walked on the keyboard trying to send an outlandish message to the clients, and she even knocked things off my desk with the swish of her judgemental tail.
Fortunately, her need for an afternoon nap in a pile of paper bags outweighed anymore critical commentary on my work.
Today was a total Friday the 13th. Work was crazy, after work was crazy, lunch was a spoonful of peanut butter.
Due to COVID-19, events are being cancelled everywhere. When not trying to get the automated fields in the expense report to work or answer client questions, I was creating a list of cancelled or postponed events to share with clients and partners before leaving for the day. We also tried to figure out what to take home in case we would need to work at home Monday (which we will work from home for a while, but not starting until Wednesday).
Then I had to run home and take mom to a doctor appointment. We were late, but being late in the day, all was well. We got to watch what is now a fulltime job: wiping down everything in the check in and reception area over and over and over. We also got the 30 questions: have either of you (I’m the driver, not the patient) been out of the country in 30 days, been near anyone sick, flown in an airplane, etc. Honestly, I was glad to see both measures taken. I was just exhausted already, since I’d gotten back from a conference late last night and got up too early for work.
A thing that can be great about Alzheimer’s is that old things are new. A horrible thing about Alzheimer’s is that old things are new. When it’s a restaurant or movie, that’s a good thing. When she finds out for the first time (20th +/-) that she has Alzheimer’s, that’s a bad thing. It was a long evening with lots of questions.
I am grateful to sleep in tomorrow. I am grateful we kept her appointment. I’m grateful for a job where work at home is possible, while praying for all who do not have that option, and thankful for our medical staff and many other necessary careers that continue to go in person. At the end of the day, there is still something to be grateful for. And even mom ended up being grateful I was honest with her, as frustrating as the process remains.
Moral of the story: There are always going to be crazy days. But there are also going to be not so crazy days. (I would have said there are also lazy days, but at this age, I have to schedule that, which is crazy.)
So mom doesn’t want her talking about her … but I can talk about me … and the migraines. My mom has always had a hard time calling them migraines. She tells people I have headaches, and she has a hard time explaining they are migraines. She was raised in the era of “migraines are all in you head”, so telling people that is what I have is like saying I have a fake disease. I think she genuinely knows I have migraines, so she may be trying to protect me from the judgement she associates with the disease.
Yet that is why I speak out. There is stigma with unseen diseases, such as my migraines and my sister’s epilepsy or Fibromyalgia and the wealth of unseen illnesses. When I hear people complain about someone who looks fine, and the assumption is that they are using a disability to gain government funds or a handicap services, I don’t understand how they can know what another person is facing internally, be it mind or body. Then again, I tend to give people the benefit of the doubt. Or maybe it’s knowing what it’s like to be judged for what is unseen for myself and my sister.
Because migraines and epilepsy are now more widely understood, I have a voice I would not have had a few decades ago. The treatments are growing. Doctors are interested and gaining knowledge. Help is more available than ever before.
I am listening to “Furiously Happy” by Jenny Lawson. She has mental illness and shares what life means to her with humor. I find it extremely relatable with migraines. She inspired me to go on with this series at least on the migraine side of this MAD life.
Migrainuers are a varied mystery to everyone in out lives, including the medical community. Our migraines differ from one another. Some symptoms of the head pain are that it is shooting through from one side to the other, only one hemisphere hurts, and one or both eyes hurt. Head pain can feel like … my head is being squeezed between two frying pans, squishing both ears; a small cannon has been shot through my temple and out the back of my head leaving a gaping, bleeding hole, but only on one side; a slow stabbing over and over going in a single quadrant; like peter rabbit is the size of a rhinoceros and is cartoon donkey kicking the top left or top right or top left rear, etc. of my head … with both feet … without ceasing; or like the ceiling is being lowered and crushing the top of my skull.
Migraines do not need to include head pain. We’re pretty sure now I was having tummy migraines from around 10 years old until 16. Then it started including head pain and nausea. Then all the fun started. I was diagnosed at 18, but I’ve had them much longer.
Our symptoms change over time and differ per person. Sometimes I won’t have the same symptoms for multiple migraines in a row. For me, nausea, head pain, and aphasia are my usual. To name a few of the other symptoms that run willy nilly: dizzy, vertigo (not the same as dizzy), fever, overactive bladder, painful joints, numbness in face or extremities, anger, the top of my head itches so that I look like a monkey with fleas, extra ringing in ears, depression, everything tastes and smells like tin, hair hurts, breathlessness on stairs or with increased activity, teeth ache, slow to think, jaw feels I’ve been in a boxing ring with a pro, smelling things that are not present, loosey goosey with the poopy, sensitivity to light, sensitivity to sound, sensitivity to smell, angry tum tum, swollen and throbbing eyes, tremors, extra stuffy nose, slow to think, and bitchiness. This is not an all inclusive list. I’m sure others who live with migraines can easily add to this list.
Then there’s severity. I am exceedingly fortunate that my migraines run the gamut of 0 to 10 on a scale of 10. Not having one is a zero. When I get them, I often straddle 5. If it’s 5 or less, I go to work. If it’s 6 or over, everyone is better if I stay at home because my thinker isn’t going to work much and I cannot be very productive. I hear others only ever have a 10. I am sick for them, because some of these people have those migraines nearly all the time. With a migraine of 5 or lower, I am able to use essential oils, reduced lights, and acetaminophen (generic Tylenol) as a few tools to go to work or stay at work. Or events, parties, church on Sunday. Whatever the case may be. I am not at my best, but I am not confined to bed.
That last one in the list of symptoms reminds me that although I do not have the traditional aura (others tell me this may include flashing lights or visual disturbance or smelling unusual things), sometimes a couple of other symptoms will show up before an explosion of severity occurs. When it comes to that last one in the list of symptoms, I never knew until my brother moved out that I was, in his words, “a bitch” the night before a migraine. He always knew when I had one, but he never said anything. I mean, who wants to use that word to describe their usually kind sister … who occasionally becomes a monster when pain is headed her way, but she doesn’t yet know about the freight train of pain moving into her personal space? He was NEVER wrong. However, had he let me know, it would have helped. I could have treated it the evening before. Now he doesn’t live here, and my mom thinks I’m usually an ornery cuss, so she can’t tell the difference.
In the last three decades I’ve tried medications in every single class of medication, acupuncture, acupressure, biofeedback, countless diets (gluten free, vegetarian, no dairy, blood type, etc.), massage, juices, vitamins, herbs, chiropractics, essential oils, and the list goes on. Acupuncture worked, but I couldn’t afford the frequency needed the first few months, and insurance doesn’t yet cover it in this country. I now have a cervical rhizotomy once-a-year, take one preventative medication daily, and one abortive as needed. This works for me. I have gone from no less than 20 days a month in migraine to typically only migraine with large temperature changes in the weather or precipitation (fog, rain, snow, etc.). This is a game changer for me. I can function most of the time!
I am so glad I did not have children. The thought of handing this off to them makes me ill. If I want children, I’d be glad to adopt, especially a child with migraines too. Although I’ve no idea how I could have cared for them, adopted or birth, much of the time. Keeping a job has been a delicate balance. Making commitments is really a guessing game, but less so having been through the flaming hoops of trial and error to learn what works for me.
The reason I make myself function is my sister Cheri. (Spell check just asked if I meant cherished, and I do cherish her greatly.) She had epilepsy, but no one knew it until she got married because they were night siezures. As she got older, they got worse. Her life altered again and again until the seizures took her from us. She never gave up trying to find a way to stay active, be a mom, take care of her home, help her brother with the fruit stand, find that white knight of a man to love, keep peace in the family, and just get out of bed each day. I am now 5 years older than she was when she died. I wish there had been a way to take her pain and that disease out of her life. Since we couldn’t do that for her, I am glad she’s a treasure in heaven where she’ll never know another moment of pain.
Migraines have been a part of my world for nearly 2/3 of my life. At this point, it is who I am. Since they partially stem from arthritis at the top of my spin and the bottom of my skull, I don’t expect them to abate as I enter menopause. I know many women who found relief then. For some unknown but joyous reason, my dad’s stopped before his 40th birthday. I’m so glad that he never had them as frequently as I’ve experienced.
So, it’s a Migraine Life for me.
The moral of the story: We all have battles we fight. They are not all seen when a seemingly able bodied person gets out of a car from the Handicap spot at the grocery store and uses the Bridge card to buy groceries. I cannot judge that woman; she could well be me. We must end the stigma and assumption when reality shows us again and again the stigma is usually fiction. If we speak kindly to one another instead of judging from afar, we could see this up close and personal.
I could do this because mom didn’t know about it. We keep her facebook account and email, but she doesn’t use them anymore. If there’s something fun or interesting, I share thatt with her. She still doesn’t know, but I will no longer be able to share about it.
Today is hard. She’s reading the book Alzheimer’s Action Plan. Since you can’t officially diagnose Alzheimer’s until an autopsy, she doesn’t understand why she has the diagnosis. I haven’t read that book, but the other materials I have read state that information followed by stating that the current testing for dementia in the living is quite accurate. She has had blood work, MRI, and many verbal and written tests. The results are clear. And if it isn’t Alzheimer’s, it’s very much a progressive form of dementia.
But do you tell her she has it so she’ll keep taking the medicine and getting help, or do you pretend that she doesn’t even though she’ll stop doing the things that help her? She doesn’t forget everything consistently. It’s like her brain is playing some random version of wack-a-mole with what she does and does not remember. It’s so random. Most of the time, she is cognizant, at least of the present. It’s not yet to the sun downing in the evening. Instead, the memory comes and goes willynilly any time of day or night. And it no longer matters if she eats well, gets enough sleep, or drinks enough water … the memory is going, and the ability to be independent as well.
I went with the truth, which meant printing her medical records again and explaining what the doctors and I and others see. It’s been a long day.
And now that she knows (she thinks for the very first time; it’s more like the 20th time), she asked that I do not talk with others about it. I think she thinks that when I shared what others have noticed, she thought I was speaking of since her diagnosis. What I was sharing are the things people noticed before diagnosis which led to seeing the neurologist. When people see things that worry them about her, they have come to me. They have done the same when I gave others cause about myself, they came to her. The things that have been noticed about mom were shared because they love her. That love has led to worry with the inconsistencies they’ve witnessed.
I am trying to honor her wishes in all things, so this is my final episode for now. Yet this impacts my life immeasurably, so I will share again. I live with her, so I have no genuine or regular escape. I don’t get to go home to my supportive husband and have time away on a regular basis. And work is not an escape, it’s work.
I will keep up all of the dementia support groups, seeing my therapist, and the like. I have learned that far too many of my friends have been through or are going through the same thing with their parents or spouses. That is why I wanted to share this: To know we are not alone and to learn from each other. I thank everyone who has been sharing with me your experiences.
With my migraines, I have found the greatest help from being full and open about them in every way possible. I wouldn’t have them controlled as well as they are today without having shared with others my pain, and I hope my experiences have helped others.
It is a heartbreaking and exhausting disease in so many ways. I have the added complication of trying to deal with my migraines, and friends have their own medical issues to manage while taking on a new disease with a loved one. Many also have children – the sandwich generation.
Moral of the story: While caring for those in need, keep up self care. You cannot care for others unless you are well cared for.
Freelance writer, editor, hobby photographer, and administrative assistant
"Outside of a dog, a book is a man's best friend. Inside of a dog it's too dark to read." Groucho Marx
The Good Things Black People Do, Give and Receive All Over The World
