Lupus, Pandemic, Political Unrest and Social Change

To say that the last few months have been a challenge for us all, is an understatement. It seems like there are a lot of “big” things that are impacting our lives.  For me, Lupus is one of those big things, but there’s a bunch of baggage to unpack for everyone right now.  The global Covid-19 pandemic has changed how we interact, do our business, work and socialize.  The current political situation is so polarized that many of our personal interactions are tense and can end in hurt feelings or stressful moments. The social changes that are taking place are also causing us to review our behaviors, check our privilege and to do some hard personal work. These are all important and I have been doing my best to address these in a positive way, but without causing enough stress to start a Lupus flare.  Its’ a narrow path some days.

I find the some days I don’t have the energy to read the news or even log on to Social Media, it’s too stressful and depressing. So finding the balance between being connected, being up to date on current events and staying healthy is more difficult for me these days.  Lupus has a lot of different symptoms for different people and depression is one of mine.  I find that I have to really take steps to choose to be positive everyday, to try to find the good in people even when I don’t agree and to disconnect when it gets overwhelming.  I find depression to be harder to dodge since I’ve been staying socially distant, and working from home. It makes it very difficult connect socially. My dear husband and my kitties try to fill the gap, but that’s a lot to ask of them.  

As much as I have my own struggles, I think of others and how their fight is so much harder than mine, and they still fight.  I take a moment and think of the demographics of people with Lupus. Most of us are women, and a majority of folks with Lupus are women of color.  It must be so much harder for them to balance their Lupus health with the current racial climate, I can’t imagine how difficult that is for them.  It gives me determination to do better. Better at managing my own balance, doing better at educating myself about the African American struggle and how I can be a better ally. I am not perfect, I am learning. I’m trying to hold hope that this pain and unrest will be a catalyst for change and that empathy and understanding will win out over pride, racism, and fear. I am looking forward to a safer, more equitable world. Our country and our people are worthy of making that change.

I think it is also important to be very responsible when participating in social media, being very diligent when sharing or posting articles, to be absolutely sure that it is real news and not some of the untrue and damaging articles that are circulating trying to manipulate viewers.  Because of the platform algorithms, social media perpetuates things that it determines that are in line with your views, whether it is true or not. It is unethical and irresponsible for me to post anything like a news article or even a meme that I have not vetted and made sure that it is not something that contributes to the current devision or adds to the hate in the world. I can’t count on others to do the same so I don’t ready anyone’s news posts either. I don’t know about you, but I’ve had enough of that. It’s just too easy to hit “share” because it feels righteous, but it doesn’t make it right or even true. I don’t like being manipulated. So I no longer read ANY “News” on social media and ONLY get my news from News organizations that are as centered and reputable as possible. It’s the price for being well informed. It’s work, but it’s worth it.

I’ve got to get to work to stay healthy, make positive change, have positive attitude and personal responsibility. I hope you will do the same.

Lupus in the Time of Corona

On a normal day, living with Lupus, being social and putting yourself out there can be a challenge.  You never know when you might have to cancel plans and disappoint someone close to you because you don't feel well enough to do things. We are also much more vulnerable to germs, illnesses, and diseases because our immune system is weak and faulty.  So we go out into the world already compromised.  If we do make a date, event, or gathering, we are often on "red alert" making sure we don't hug or kiss a family member who mentioned that they are just getting over a cold, that we don't taste another's food or drink, and we do wash hands a lot.

Now that our whole world is battling this new Corona Virus, almost everyone is taking measures to keep the infection rate low enough to allow our medical professionals time to treat those who need it without swamping the health systems, to make sure that there are enough available respirators for those patient's who need them.  If we don't have enough respirators, and there are too many patients who are sick enough to need them, then the health workers have to make very difficult decisions. They must triage patients based on both need and on whether the patient has a good chance of survival.  So those patients who have chronic disease, heart disease, cancer survivors, asthma, Lupus, etc. are most likely not going to get a respirator.  For those of us with Lupus and other autoimmune disease, not only are we at a higher risk for contracting the Covid-19 in the first place, we are also guaranteed that if we to contract it our immune system will go haywire and start helping the virus to try to kill us.  Once we are sick enough to need a respirator, we will not be likely to have good outcome and that respirator will most likely be given to someone with a better chance of surviving. So we need to be extra careful.

With this in mind, I have been trying to protect myself.  I go to the grocery store, masked and gloved, and these outings encompass most of my interactions with other humans. I have been working from home for the last month and will continue to do so for another month at least.  My employer has been wonderful allowing this to happen for me and I am very thankful.  I know it can't be easy for my team to have me missing from the ranks, but they have been supportive as well.  I miss them.

In fact I miss everyone. Social Distancing, the closing of restaurants, the cancelling of events, and the need to stay at home, has separated me from almost everyone. When I do see someone it's from a distance, looking longingly and waving to a friend or loved one.  I have my dear husband and my kitties, but I do feel even more cut off from humanity than I usually do.  Lupus had kept me from participating in certain aspects of life and social activity and this situation has pretty much put a stop to everything.

Before all of this I was working on trying to be more social, finding ways to see friends, attend art workshops.  I had 4 weekends booked with things that interested me.  That all got canceled and I have felt cut off ever since.

It's all so uncertain, what this will mean for people like me in the future is unknown.  Will we be able to hug friends again?  How long will this viral risk be out there? Even if this levels off and respirators are more available, there is still the risk of being infected, getting really sick and my immune system trying to kill me. Will I be able to get my medication when I need it? Perhaps if there is a vaccine, that will help, but how long with that take?  How long with my life be at risk?

I know this is temporary, and I am safe and have what I need.  I do get sad sometimes, feel isolated and overwhelmed. I do get stressed out about the situation, and that doesn't help with my symptoms. So I've been trying to make events at home. We arranged an event on Facebook with some family and friends to have a "virtual" cocktail party, where we all got dressed up, with a cocktail or a glass of wine and posted photos of our shenanigans, that was a lot of fun and with everyone posting at the same time, it felt like connecting. Then my sisters and I had a Zoom meeting to just chat. That warmed my heart.  I have also been trying to get up, shower, get dressed and do something every day that makes me feel good. Today was a Spa Day, I did a face mask, did my hair and then made a pot of tea and sat down to watch Pride and Prejudice.  Yesterday I made sourdough biscuits and the day before that I painted portraits of my cats. This keeps me feeling less trapped and cut off and more thankful for the time I have to spend on things that I like.  I'm getting excited about planting my garden this season, I'm in the planning stages, getting things ready.  I am looking forward to the future, seeing my people in person, hugging my people, doing fun things with others or even just sitting and having a cup of coffee with a friend at the local coffee house. 

I will see you then, save a hug for me.

The New Symptoms

Well, I’d been doing pretty well for a while. Yep, I’ve got my medication, I’ve got my sunscreen, hats, umbrellas, I take my naps and go to bed early. I eat well, and try to keep the stress down. I don’t exercise enough, but hey, do any of us?  Yeah, I was doing pretty well…. 

The last six months or so, I’ve been having some new symptoms that hit me every once in a while. In addition to the current list of Lupus weirdness, I have now added this new thing, a new kind of Lupus flare, and it kicks my ass. The thing that is really annoying me is that I can’t figure out the trigger.  When I get the rash, the fatigue and exhaustion, and the  nausea, I know I have spent too much time outdoors and have gotten too much sun. And let me tell you, too much, it’s not that much. The new flare symptoms seem to hit me out of the blue, it starts in the morning, when I wake up with a blistering head ache, and the muscles that move my eyeballs feel like they are on fire. I am nauseous, and about a half hour to an hour later, I am vomiting. And for those of you who really know me, you know that I don’t vomit easily. This means I can’t keep my meds down, so my symptoms get worse. This flare lasts for about a day, where I’m either vomiting, or sleeping. Not just napping, but sleeping all day long. I don’t think I’ve ever been so exhausted. Things start calming down by evening and I try to drink some water and then go to sleep for the night. You’d think that since I’d been sleeping all freaking day, I wouldn’t be able to sleep through the night, but nope, I sleep like a rock all night long. By the next morning, I can tolerate my meds, a little tea and toast, but I’m still exhausted, napping or at least not doing anything more than a little couch potato action. I start to feel a little better and can eat a bit more normally.  By the third day I’m still tired but not nearly as exhausted, I can eat almost normally, and coffee tastes good again.  And that is my weekend, wasted being sick.  Ok, enough whining. 

I’ve been to the Rheumatologist, he said yep, it’s Lupus, and I now have a new medication.  This new medication is to stop the nausea, so I can then keep my regular meds in my belly long enough to help with the Lupus flare. I can also take something for the pain, which helps. The anti-nausea meds work and that seems to help that part, but I still have to sleep all day and rest the next. It doesn’t make the flare any shorter, but makes it more comfortable, if that makes sense.  

Friday was my day off and that’s when this started this time. Its Sunday evening and I’m just feeling almost normal, I even did a load of laundry.  I got some pretty good kitty time too, they like it when I stay in bed with them, and they keep me company. I get to go to work tomorrow and I have clean underwear, so I’ve got that going for me. 

I’ll be trying to figure out my new trigger, I haven’t a clue at this point, but I’ll keep trying.  Then I can adjust my, activities, diet, or rest to try to find the balance between living my life and Lupus.

I’m thankful for having my dear husband, who brings me home chicken soup, and brings me water. For my kitties who keep me entertained, and for the things that I can still do that bring me joy. 

Planning for Retirement with Lupus

Retirement, that wished for moment when you can choose how you spend your days, you can follow your dream or purpose, travel, gather with friends or loved ones without the responsibility of a job or the need of a paycheck.  We often look forward to this a time of relief.  

I recently signed up for a series of seminars that help you plan for retirement, give you tips on how to withdraw your income with the best tax outcome, etc. We were lucky in that we were given this advice at a young age. Start saving for retirement as soon as possible, put every spare penny in your 401k or pension plan as often as possible and you will be in good shape by the time you need it. If you wait too long to start, you can lose a lot of earning time which can extent the time you have to work when you are older. We may not be millionaires but we will live a comfortable life. It was great advice. During this seminar the speaker brought up something that I found a bit distressing.  He said that one of the best investments that you can make for your long term financial health in retirement, is to invest in your health now.  If you have health issues when you retire, it could cost you much, or all of your retirement nest egg.  As you can imagine, that can be a serious worry for someone who has a chronic disease like Lupus. 

We are active, we eat healthy, we are non-smokers, we don't drink much.  You'd think that would help.  However, this revelation puts to rest the "maybe we can retire early" hope.  If I had to pay for health insurance at the current new rates on my own with a pre-existing condition, or if my disease progresses and I develop new organ involvement, this could chip away at my retirement nest egg before I get a chance to do the retirement adventures I'd hoped for.  Or I could run out of retirement money too soon and be old, sick and broke. The other option is to wait to retire until I'm old enough to qualify for Medicare and hope that Medicare is still there for my generation, after the Baby Boomers have used it, or after any political legislation happens. It's distressing.

My little Virgo, plan ahead, have a plan B and C, personality is having a bit of a meltdown right now. Because My Dear Husband and I don't have children and I am the youngest of my siblings by at least 11 years, counting on family in my elder years are not an option.  We've even had conversations about leaving America and retiring to a country that has more affordable health care, or universal health care. We are not sure if that is a viable option, but it feels so sad to think that the country of my birth may not be a safe place to retire for someone like me. In the work careers of my parent's generation, if you worked hard and put in your time, you retired with health coverage provided by your employer.  That just doesn't happen anymore, especially in Southern Oregon where many employers don't provide any health coverage for their employees while working, let alone after retirement.  

I am not giving up, I will still be working toward remission and long term health. I'll still be saving and investing to make sure I have the best retirement that I can plan for. I'll still be caring for my own health and wellbeing in the hopes of a healthy and active retirement.  Cheers, here's to a happy, healthy retirement!

Taking Lupus on Vacation

Well, I think I have done it! I have taken Lupus along on Vacation, enjoyed myself, and survived with only mild symptoms. Yay me! I feel pretty proud of myself, actually. While I'd like to take all the credit, there is a little bit of luck to it as well.  I'll take it.

As some of my followers know, my Dear Husband and myself have a tradition in our marriage that began on our first wedding anniversary.  We didn't want our anniversary to be a hardship on one person more than the other, or have it be something that we would forget about.  So My Dear Husband arranged for a "Mystery Trip" for our first wedding anniversary.  It was just a long weekend away, a nice dinner out and some romance. I didn't know where I was going, I only new what to pack and what time off to arrange for at work. It was lovely and I was challenged to do the same for my Dear Husband the next year. We have been doing this for each other for the last 30 years and it's been great. We have, stayed in a tree house, bed and breakfasts, taken trips on trains, driven to exciting locations and had grand adventures. Some of our early adventures were very humble but fun for us anyway. Well this year was our 30th anniversary and it was my turn to plan the Mystery Trip.  However, I put it to my Dear Husband, I could plan the Mystery Trip and I would be happy to do it. Or, since its our 30th, we could do a BIG trip and plan it together.  We opted for the BIG trip and the planning commenced.

With a big trip there are a few big concerns for a person with Lupus. I have to be very regular with my medications, apply sunscreen daily, watch my diet, get plenty of rest, avoid stress ..... this is not easy when traveling.

Our fist step was to choose where and how to travel.  In the past, before Lupus, we were fine with flying to a location, renting a car, getting a map and following our nose.  However, that type of travel is a little more uncertain, and sometimes stressful, and never on schedule. So for this trip we decided to choose an "at leisure tour" where we would stay in one location for 3 days, then move on to the next location and settle in for 3 days, etc. This kind of traveling is a little less stressful as we didn't have to drive in a country where the rules of the road are different and we don't know our way around. There would be a little more down time every few days where we would have half a day on our own and would be able to explore or rest, as opportunity or needs arise. Choosing a leisurely tour narrowed our choices of destination down a bit and we whitttled it down further to three destinations. Since it was my turn to plan and I should choose something that my Dear Husband would like, I let him make the final choice.  He was thrilled. We chose a tour that started in Amsterdam and continued on to Luxembourg and Belgium. Because my Dear Husband is a home brewer, he really looked forward to drinking Belgian beer and I don't mind a beer now and again myself. It was a great choice. Unlike my Dear Husband, I had been to Amsterdam before, but neither of us had been to the other destinations, so it was a real adventure for both of us.

One of the first things I did was start a few months in advance and start walking every day to build up  my stamina a little more each day.  I wanted to be able to keep up and avoid flares. As the departure date got closer, I started resting up, declining social functions and doing a lot of self care. I wanted to start out in my best shape with my batteries charged and ready to go.

Another thing I did was pack very well.  We only took our 21 inch carry on rolling suit case.  This was such a good thing, because I didn't have to carry anything except my purse (which I clean out to be light and manageable). If I was going to have a flare and muscle weakness during the trip, I didn't want to have to carry anything heavy. The trick to packing light was something I learned by doing it wrong and learning the hard way.  I'm getting good at this these days. You need two pairs of really good comfortable walking shoes. Use tried and true shoes, don't take a brand new pair of shoes and don't bring heels. We walked 5 to 10 miles per day and you don't want to break in new shoes with that kind of
mileage. Trust me, you don't need the red stilettos, save them for a dinner out when you get home. We went to Amsterdam in mid September, so we checked the weather for about a month prior to get a feel for the weather. They were having rain, not to cold, but very wet. So we needed a rain coat and layers. I did not pack a pair of underpants and socks for every day of the trip. It takes up too much room. So I packed a tiny bottle of Woolite, to wash out our underthings. The first day at each location we hand washed our under and socks and hung them out to dry in our hotel room.  Ladies, stick to light weight lacy panties, they dry faster. Gents, the microfiber shorts dry fast too. It worked very well.


Packing medication worried me.  So I packed my week at a time pill box in my suit case and I also had a small bottle of meds in my purse.  I figured if one or the other is lost or stolen, I'd still be able to keep up with my medication regimen.  I normally take my meds in the morning as soon as I wake up, however with the time change and traveling, I didn't want to mess up my body with changing the time I take my medication. My solution once we landed, was to take my meds before bedtime, it would be close to the same time to when I normally took my medication when I was home.  It worked out well and I was able to keep things consistent.

I think the location and the time of year helped me with my challenges as well. It is not a tropical location, so there was not a lot of skin showing.  We were in overcast and rainy weather with bits of blue sky. While I was careful to apply sunscreen everyday, I didn't need to wear a sun hat or hide from the sun.  It was quite freeing actually.

The Jet Lag is always a challenge, however staying hydrated and trying to sleep as much as you can on the flight will help. Earplugs are your friend. We actually brought some melatonin and took it just before take off, I think we may have nodded off a bit or at least rested.  Once we landed, the key was to stay awake and not to nap, we just waited until bedtime in the new time zone and the next day we were pretty good. Coffee helps.

For me Lupus does not like it when I drink very much alcohol, I usually get muscle weakness and skin issues. However when you are in the Netherlands and Belgium, it would be a shame not to partake of their lovely beer.  My husband is a home brewer so trying beer while we travel is a given.  That said, I do have to limit my intake, but I did not miss out.  I can have one now and again and I am glad I did. I limited my beer to one every few days and would take a sip of my Dear Husband's when I didn't get a glass of my own, so I could taste a few beers but without the Lupus symptoms. It worked, mostly.

The nice thing about being on a tour is that you don't have to drive, navigate or waist time getting lost.  The bad part is that you have to be on a bus with a lot of other people, and their germs.  I made sure I had hand sanitizer and used it often. Gloves also help, especially when visiting ancient buildings with ancient handrails with generations of germs on them. Then when you stop for lunch and take your gloves off, your hands are clean when you pick up that sandwich or stroopwaffle. There  were a couple of people in our tour that got a nasty bug and my Dear Husband and I did not. So the hand sanitizer paid off.  I did come home with a very mild cold, but not the "nasty" that was going around our tour group.

There are a few things I wish I would have done a little differently. One of my Lupus symptoms is that it attacks my skin.  I will develop red, itchy, scaly patches on my hands, elbows, and face that can sometimes develop open wounds. They can start quickly and in a matter of hours and I have very uncomfortable patches.  At home I would slather with the ointment prescribed by my doctor and also with a fragrance free lotion that helps with keeping this under control when I have a break out.  I brought my ointment with me but neglected to bring my lotion. The lotion that is provided in hotels are perfumed and irritate my skin further. My hands were a mess for most of the trip. I would have done better had I brought a bit of my own lotion. Also, I would have brought a better under eye concealer, because I look really tired in many of our photos. Apparently the medication that I am on also contributes to the dark circles and of course jet lag doesn't help. The other thing I would have done is bring formal leggings, the kind that look like slacks but have some stretch to them and don't have buttons and zippers at the waist. I had some black jeans that had some stretch to them but they did not hold their shape well and did not dry well when we got wet while walking in a down pour. They worked well enough but I think I would have been more comfortable with sturdy leggings, especially when were were at the big dinner at the German winery or to accommodate the Frietes with mayonnaise and Belgian chocolates!

The best things about traveling is meeting new people, opening your mind, seeing how other countries operate, taste new things, participate in local events and bring home amazing memories.  So to all of you, I wish you healthy travels and amazing adventures!






And of course, there are the joys of coming home.....

Good things, Good People, and Lupus Fall Out

Gwenyth and Lizzette

As many of you know, I participate in an outdoor event every year where I volunteer with an amazing group of people who make up the Alter Abled Access Advocacy crew. We advocate for equal access for those who may be differently abled, providing wheelchairs, access to alter abled potties, deaf interpreters, event information in braille, resting areas, and much more.

It's a three day event held in the woods, where we camp for the event and for a day before and after to do the set up and take down. Its work, but it's fun and rewarding in a way that's hard to express. I've included some pictures of my crew to give you a feel for these lovely people. It is good for my soul and well being. It's one of the things I look forward to every year. However, it is also a challenge to participate and stay healthy, Lupus doesn't like camping. This event happened one month ago and I have to say, I am just now beginning to recover from the Lupus fall out.

Camping, sun, port-a-potties, lots of human contact, germs and heat are difficult to navigate for a Lupie. I have tools for trying to stay healthy during this event that help but I usually have some level of fall out after this event. 

Tamra and Kenny

For example, one year there was the "Fernando" incident, which refers to

the swollen growth that showed up on the right side of my neck (please see previous blog post for details). This year, I thought I was doing pretty well, I had my sun screen, my parasol, my hand sanitizer, my wide brimmed hats, my medications and vitamins, earplugs ( to help with sleeping)... it just wasn't enough. 

With all of the people, the hugs, the sharing of snacks, I came down with a nasty summer cold including the deep cough, runny nose, etc. That in itself would have enough, however my body's immune systems's response is to attack the lungs and sinuses. This caused my lungs to hold onto all of that mucus and not let go. My husband also got this nasty bug, but only missed one day of work and was over it in about 4 days. Lucky guy. I, on the other hand, was extremely sick for several weeks, had a late night trip to UrgentCare, got four prescriptions, and missed several days of work. It's been exactly one month and I am still using an inhaler and still coughing up Smurfs. I'm so much better and very close to being finished with this

adventure. 

The Crew of Dragon's Head

With Lupus there are always trade offs, compromise and consequences. Lupus have to choose wisely. However, this event and these people are important to me and I will most likely keep doing it and each time I participate I learn how to better compensate for the Lupus, but its still a challenge each time. I have given up so many things already, I really don't want to give this up. So I keep trying and preparing ahead of time, and recovering after. This group of people renew my heart each year and I don't know what I would do without them. This is part of who I am. Thank you Alter Abled Access Advocacy, you make my heart happy and I love you.

Rick and Alea

The Dragon's Head - Home of Alter Able Access Advocacy

Morgan, Will,
Someone hiding behind glasses, and Jennifer

Inflammation is my Kryptonite

Inflammation is my Kryptonite, and it's difficult to say when or how it will attack.  Lupus is so very unpredictable and it seems to linger in the oddest way. It always makes pinpointing the problem, when it arises, a bit murky.  When a problem with my health or a ongoing pain or illness hits, I try to take an inventory of my body's workings and symptoms to determine if it is Lupus or if I have truly injured myself or if it is a different illness or disease. It takes time to figure it out, its like a game of clue that takes months to get the answer. 

The latest mystery is the "case of the left shoulder".  This shoulder has been painful and has limited range of motion. I have been unable to raise my arm past shoulder height, it simply binds and will not move higher and there are some movements that are very painful. This has been going on for about a month and a half, during which I have tried all of my Lupus tricks to get my body to calm itself and control the inflammation that may or may not be the cause. However, my tricks have not been working. I have gone to my Doctor and she thought it might be bursitis, but it's hard to tell. I have started physical therapy a week or two ago and have seen little improvement as of yet. My care providers say that if the therapy doesn't work the next step may be a cortisone shot and if that doesn't work the cause may be a rotator cuff tear. Diagnostic tests and surgery my be the final solution, but with that comes the risk of Lupus fall out caused by the trauma of surgery. I really hope it is just the inflammation that is the cause but its very difficult to predict and it's expensive to do so. Thankfully I have health coverage, but there is still a cost for my part.

If things do turn out to be more dire, there is a new treatment for a rotator cuff tear that could avoid surgery and I have a co-worker who has done it and is happy with the outcome. It's a process which uses the patient's own platelets to inject directly into the tear. It's very painful and the recovery is about the same time as surgery, however it is less intrusive and inflicts less trauma. This procedure may be a better choice for someone with Lupus as it is less likely to cause a Lupus flare and cascading symptoms that could cause more scary symptoms. There are only two doctors in the Rogue Valley who perform this procedure. So exercise, research, stress, and worry seem to be my current pastimes. Stress can cause inflammation, and inflammation is my Kryptonite.