One Patient's Positive Perspectives

Posts tagged ‘rash’

Lupus and a better no gray way

SavedPicture-2014117151122.jpg

New Oil-Based Hair Color without Ammonia — No Sting, No Smell, No Rash!

320px-Butterfly_sikkim

Image courtesy of Wikimedia license Incomposition Sikkim

We should know not to try to draft a post from a cell phone!  I was sitting at my doctor’s office getting my Benlysta infusion this afternoon with just my cell phone along for amusement.  So, I started trying to write a post I have been trying to get to for a couple of weeks.  I uploaded this picture from my windows phone, taken at a recent hair dresser appointment.  While logged in earlier this evening to finish the post, I discovered that the picture had been posted all by itself, without the story behind it.

Well, perhaps I should finish the post, now, especially since some of you readers have already “liked” it.  That is great faith, liking a post before it is written!

At my last hair appointment, my hair dresser was excited to tell me about a new Matrix hair color that the salon had started using. She has been using a Matrix formula to do highlights and lowlights that covers just the gray roots, about every 8 weeks.  The formula was pretty mild, but still contained ammonia and caused my scalp to burn while it was on my hair, and then afterwards I would sometimes get lupus rashes on my hairline where the scalp was irritated.   It was not uncommon to need prescription prednisone ointment for a few days to keep rashes in check.

So, the new oil-based Matrix formula Rosa wanted to try has no ammonia, and doesn’t smell or sting, and there was no need to sit under the hair dryer.  She explained that the oil in the formula carried the pigment deep down into the hair shaft and bonded to the inside of the hair, making it smooth and healthy instead of damaging the hair.

Rosa and I have occasionally discussed the problems many lupus patients have with perfumes, dyes and hyper allergic response to many chemicals in the environment.

You see me smiling in the picture, because even though with goopy hair dye all over my head, I somewhat resemble a drowned rat, my scalp was not burning nor were my nose and eyes wincing from fumes.  No smell, no burn and afterward… no rash after my hair appointment.

WP_20141018_13_35_57_Pro (1)

Meet Rosa!

I updated this post when it was finally finished so you could also meet my hair dresser, Rosa. She has been taking care of my hair at JC Penny’s salon for over a year, and “rescued” my dry damaged hair from previous over-processing.  My sister-in-law introduced me to her, and I have been very happy ever since.

So, this time, she recommended the perfect new permanent hair color for a lupus patient.   You might just want to ask your hair dresser about the new Matrix oil based formula color, “Colorinsider.”  Check out their web site link in the caption of the picture I “borrowed” from them.

I don’t often support a product (and am not being compensated for this in any way) unless I really believe it is something worth sharing with other lupus patients.

Advertisements

Lupus, Benlysta and a little browsing with brunch

This morning was a repeat of many Saturday breakfast brunch rituals.  Today it was omelets, bacon, toast, homemade plum jam,  strawberries and bananas with coffee.  I really enjoy sleeping through half the morning each Saturday, but then I get up mid morning and usually make a hot brunch for everyone in the house.

Before our daughter and son-in-law came to live with us, breakfasts usually just included my husband and me, but these days, it includes them as well.  We often enjoy a chatty social time during the cooking, and at last the cook (me) gets the last, best, fluffiest omelet — when the skillet is finally well seasoned and everyone else is fed.  So, now I sit down to enjoy the fruits of my cooking and a little browsing with brunch.

Benlysta Twenty-Two Month Update

It is time for an update on my Benlysta treatments, since yesterday was month twenty-two in my treatment.  However, the last infusion almost didn’t happen, after nearly sleeping the day away in lupus exhaustion and fatigue.

Yesterday began with a start, after awaking from a dead sleep in the quiet house.  It didn’t seem like morning at all!  What time was is?  Groping through fogginess to find a watch on the bedside table from the night before, the startling realization shook me that it was 12:15 p.m.  The morning was gone and it was lunch time,  and sudden panic and urgency swept over me, while a feeble surging trickle of adrenaline was coaxing my body and brain into wimpy “fight or flight” mode.

Panic and Rush to Get Ready

With the realization that my Benlysta infusion appointment was scheduled for 1:00 p.m., only forty-five minutes from my waking moment, I jumped out of bed, stumbling as I faltered to get the waiting my sandals on my feet.  I was still dizzy with sleep.  A look in the mirror didn’t help my hurry.  My night sweats had turned my wavy hair into a rat’s nest of randomly angled mess, and there was no remedy but the shower!  Hurrying, with tooth-brush in hand and  mad splashing of water and shampoo,  within a couple of minutes I was out of the shower and drying.

It crossed my mind while holding my towel, that I could easily have slept right through the entire day — completely missing my infusion.  I was grateful for whatever had shaken me out of slumber, thinking, “thank you Lord!”

I was finally clean, dry and almost presentable, but still desperately needed clothes!

Quickly grabbing some necessary under-things, shorts and a favorite shirt, I dashed through a cursory grooming and took my morning meds with a splash of orange juice.  Grabbing my purse, I jumped in the car and realized my heart was racing with urgency.  It was now 12:55 and I was very late, but still determined.

Late, but determined

Photo by LA's Daughter-in-Law © 2013I pondered that we had postponed my Benlysta infusion last week, so that we could travel out-of-town to visit family.  I didn’t want to postpone the Benlysta another week!  My joints were already reacting to the resurgence of those little nasty Blys proteins that confuse my wayward B-cells.  I really wanted Benlysta soon to blast the increasing Blys population and quiet my Lupus back down again.

Calling up the hospital cancer infusion center while I headed for the freeway, the gal put me on hold for over ten minutes.  By the time we finally spoke, I was almost halfway there.  She was kind about my tardiness and told me to keep on driving.  Arriving twenty minutes late, they quickly processed me and a nurse promptly whisked me back to the infusion room.  Soon the powerful biologic drug was dripping into my vein and on its way into my system to once again fight my lupus.

Update on Benlysta’s Effectiveness

August  2013The Benlysta does its thing well, and has been greatly moderating my lupus.  My CNS lupus involvement remains subdued and quiet, my fatigue is greatly reduced, and my liver has remained symptom-free.  Minor symptoms of lupus — discoid rashes, mouth and nose ulcers, arthritis and bouts of milder fatigue are still present, but my overall physical strength and health are continuing to build up, as the lupus has continued to stay much quieter over a long period.

August will mark my two-year Benlysta treatment anniversary.

Lupus fatigue midst the hope that springs eternal

cc

Hope midst lupus flare

Hope springs eternal, and so it must be for me with my lupus.  Over the past few weeks, I struggled daily with overwhelming fatigue and bone-tired exhaustion from a long, low-grade lupus flare.  Discoid lupus rashes have popped up on my scalp, fingers and expanded in size and aggravation where they already were stubbornly persisting.  Mouth and nose ulcers, and lupus rashes in some very unusual places, such as the opening of my ears have emerged anew.

My job has suffered, while many days  I was only able to work half-days and was struggling to fulfill work responsibilities.  It has been a challenge to feel hopeful in the midst of such weariness.

cc

Hope is still there

However, hope is still there, deep down, flowing inside me through a place far below the surface of the flare, ever-present and encouraging.  Hope.

Hope that tomorrow will be better, that increased steroids and today’s Benlysta infusion will shut down my flare, and that I will do better in my work again soon.  I must persist in my hope that I will be able to better meet the needs of my family again, that I will feel like cleaning house, maybe even as soon as tomorrow.  I have abiding faith and hope that God will enable me to get my eyes off of myself again to look outward instead of focusing inward so much, as I unfortunately have been doing of late.

I am convinced that hope and faith do not look down, backward or inward, but rather upward, forward, and outward.

cc

Hope looks upward, forward, outward

Hope depends upon faith.  Faith in someone or something bigger, stronger, wiser, more powerful than myself.  There is no question now that this someone on which to direct my faith is not me.  Hope comes from faith, and the ability to relinquish and invest my trust into that one I have faith in.  My ultimate source of all hope is  the Lord, for He alone is greater than my finite mind can comprehend — in his vast wisdom, love, mercy, power, strength and so much more.

I can trust Him, and I can trust that these things that He permits (not causes) to come into my life because of lupus, such as this month’s weariness, will not always be the way they are today.

benefits

Infusion and hope

So, I hope.  I sit here at the infusion center with Benlysta flowing into my veins, and hope.

My flare will ebb, my rashes will be relieved, my strength will return, my medications will work, and I will be better tomorrow than I am today.  I will choose to have faith, to trust, to have hope and look up, not down.  From deep within me where God himself has graciously touched my heart, I know joy welling up and arising through my weariness.

The joy of the Lord is my strength, and my joy will be greater than the flare and weariness of today.  Today I choose joy, not because of how I feel or because of fair weather, but because of the One in whom I trust for tomorrow.

dd

Choose hope. Tomorrow the sun shines!

All day a fierce late winter storm blew through Arizona.  I traveled down the freeway to the hospital in a driving afternoon rain, with windshield wipers slapping back and forth in a sloppy rhythm.  The downpour drenched my clothes in the mere 30 steps from my car to the hospital front doors.  The nurse greeted me with a warm welcoming hug, but I gave a decidedly damp one in return.

Although it rains, and my joints hurt and I am tired, I still have hope and believe.  Tomorrow, the sun shines!

Today, in my lupus flare, weariness and pain, I choose to rejoice.  I choose hope.  I choose joy.

Lupus and confessions of a coffee mug hugger

Screaming alarm…

The alarm on my tablet PC laying on the end table summoned me from the half dead depths of sleep. The flashing screen announced, “9:20 Dr. Appt.” My waking realization was that in exactly one hour I needed to be there! So, striking the graphic snooze button to silence the screaming electronic gadget, I set the tablet back down on the night stand. For just a moment, my groggy lupus-tinged brain begged me to lay back down and wait for the 30 minute warning.

I have been late too many times in my life because of sleeping in, or because my lupus was too active in the morning to allow me to safely leave my house earlier. Today was not going to be one of them. Forcing myself out if bed, I stumbled down the hall to assess the morning state of my kitchen. Alas, no waiting coffee on the burner this morning. My husband must have left in too much of a hurry to make it.

Coffee, quickly!

Coffee, quickly, was the first order of business! No time was left to brew a pot, so some microwave zapped water and instant coffee on the go would have to do. Morning medications with a dash of juice and a quick piece of toast and Nutella.  Next sprinting through a mini-shower, and stepping into jeans, t-shirt and flip-flops were all a continuous motion sequence of events ending with a key sliding into the ignition of my PT Cruiser.

In motion, still…

In motion, still, I traveled down the freeway on a ten-minute jaunt to the doctor’s office. Still groggy and barely legal as the CNS morning lupus symptoms clung to my still fuzzy brain.  I realized I was actually hugging my thermal coffee cup!  In between sips of the stimulating drink, my cup was not in the cup holder between sips, it was gripped by my right hand, as I hugged the warm cup against my heart.

teddy bear in years long, long before

So, this is the confession of a coffee mug hugging lupus patient, in that dawning realization I was actually clinging to my coffee cup as I once might have to my little teddy bear in years long, long before grand-motherhood, motherhood, college, grade school and kindergarten. I had caught myself embracing a warm thermal mug, enjoying a few moments of miniscule fleeting comfort. How could I help but quietly chuckle at myself in the silliness and simplicity of the pleasure.

Off to the McDonald’s

Barely on-time and slightly more awake, my destination was in front of me. I enjoyed the remainder of a great cup of coffee as it accompanied me through the waiting room, time with the doctor, and chat with staff before leaving. The last sip went down as I returned to my car and headed off to the McDonald’s across the street to get a refill, write down this snap shot of my thoughts, and chuckle one more time at my now humorous expression of endearment to a mere coffee cup.

Cup and refill in hand

Now, my brain has shaken off enough of the clinging brain fog to safely embark on the rest of my day’s journey. Cup and refill in hand, I will try to regain some shred of maturity, and refrain from any more mug hugging this morning, at least not in public.

Lupus and forgetting the unforgettable

Friday telecommute

Last week, there were no doctor appointments or Benlysta infusions scheduled for Friday, the day each week I telecommute and schedule in most of my appointments with doctors, lab work and other meetings. One of my best friends asked me to come over for lunch, since she was off work for the day.  This was the second time we had tried to get together in a couple of weeks, since the week before I had been sick all Memorial Day weekend, and forgot all about our plans to meet on Tuesday.  She of course, anticipated I would not remember after being sick for three days.

forbearance of sister friend

So, my dear friend overlooked my forgetfulness, because she well-understands the effects lupus has when it goes after my central nervous system in a flare. She is always so gracious when our friendship and plans take a back seat to the changing state of my health. That is why she remains one of the few very special people who have risen to the status of sister in my personal circle of friends.

ok & looking 4wrd 2 it… see u then

So, when Friday morning came, I woke up with a groggy brain and a grateful heart that there were no places I had to go that day. There was no thought on my mind except that for once, I had no appointments on my schedule.  The lack of appointments had been the original logic behind the plan to meet my friend at her house during my telecommuting day lunch break. She only lives about five minutes from my house, so it was really a workable plan. On Thursday, she texted my cell phone to check if we were still on, asking if I was I feeling okay?  My reply, typed with two thumbs on my cell phone at a stop light, “ok & looking 4wrd 2 it… see u then.”

fixed myself a sandwich

Well, as Friday morning progressed, I pulled out my laptop, logged on to my work computer network via the Internet and nifty VPN connection. Lunchtime came, and I went out to the kitchen and fixed myself a sandwich, and went back to work. It never entered my mind, until late the next day that I was supposed to call my friend and go to her house for my lunch hour on Friday.

On Saturday, I had a vague sense I might have forgotten something I was going to do, but couldn’t remember what it was. Was I going to practice music with a friend after finishing my work? Was that the day my other friend was planning to meet me? Was my other friend in town this weekend and we were going to have a piano lesson?  None of these had made it on to my digital calendar, so I gave up trying to remember what I had missed.

Did you forget about lunch?

On Sunday morning at church, my friend approached me with a hug, as she said, ” did you forget about our lunch on Friday?” I was suddenly seized with the realization I had stood up a best friend, again, twice in two weeks! With profuse personal anguish and painful honesty, all I could offer in explanation was that I had simply completely forgotten about her on Friday. “Well, when.11:00 a.m. came and went,” she explained, “I eventually figured that out.”

This was a difficult, awkward moment! Not meaning to, I had disappointed my dear friend and hurt her feelings. Of course, she tried to understand, but still, the lack of being important enough to me for me to remember our plans, for a second time, had to have some sting to it.  Not many friendships could weather this type of challenge, but this one has seemed to endure many of these memory lapses.  I thank God for a handful of friends and family like this!

Arrrgh!

This, the unpredictable loss of important short-term memories, priorities and plans, is one of the most challenging adventures I must face due to lupus, and its frustrating impacts from attack on my central nervous system.  If I could only always remember not to forget, I would!  In the eloquent words of the Charles Shultz cartoon character, Snoopy the dog, “Arrrgh!.”

Prognosis and Hope: Fact #27 – Lupus is not contagious but is often invisible or misunderstood

Prognosis and Hope: Lupus is not contagious and cannot be “given” to another person. Lupus is unlike and unrelated to HIV/AIDS or any other infectious disease. Once people realize this, they may want more information or to correct misconceptions about it.

Lupus is an invisible autoimmune disease

Lupus is an autoimmune disease that is mostly invisible. Rashes and visible joint inflammation are understood easily because others can see them, but are the least severe of lupus symptoms. When the rash clears or the swelling subsides, lupus may still be active and causing organ damage or discomfort, without visible signs. Others often don’t understand this hidden aspect of lupus.

When I need to talk about my lupus

Sometimes when I need to talk about my lupus with people at work, with family or friends, lupus is misunderstood. Some people have mistakenly assumed it will be fatal or life-shortening. Although uncontrolled lupus can damage vital organs such as kidneys, liver and heart, with proper treatment, most lupus patients can live a normal life span. I try to help others understand this.

A miracle cure?

Then, there are those who insist lupus is curable, and they tell me about a supplement or amazing natural remedy that I need to try. I’ve been told many anecdotal reports of cousins, friends and neighbors who “got over” their lupus because they were smart enough to take the secret cure the doctors don’t want me to know about… the magic supplement. I try being polite, and realize they just want me to feel better.

Some in denial about my lupus

And, there are the people who do not believe that I have lupus. I have been frustrated, and even tempted to anger when someone clearly denies I have lupus because they have decided I don’t have their permission or approval to be sick. I am not completely sure what to do with this self-centered attitude toward my lupus, but it is hard to deal with! It is certain these people remove themselves from my support network, probably unintentionally. I don’t waste my time trying to convince them.

Someone you know has lupus, ask them about it.

For most people, knowing there is no cure makes them sincerely concerned. I appreciate the conversations where I am able to raise others’ lupus awareness, and perhaps help them understand it better. I believe everyone should know enough about lupus to be able to recognize possible signs and symptoms, and to encourage someone who may have lupus to get medical care. I do my part in spreading lupus awareness to those I know, because someone they know has lupus.

Living with Lupus: Fact #22 – Not so beautiful butterfly rash!

Living with Lupus: The malar, or “butterfly” rash on the face is present in about one-third of those with systemic lupus. This flat, reddish rash across the bridge of the nose and cheeks, is often the only visible symptom of this form of lupus.  Before I was treated for lupus, a malar rash showed up on my face many times.  As a teenager, my mother was intrigued by the deep purple splotches I had over my cheekbones.

Faces of malar rash

Malar rash is one of the eleven diagnostic criteria for lupus.  After my treatment with Plaquenil, the standard medication for all lupus patients, most of the vivid pigmentation of malar rash quieted down.  Now, malar rash shows up after getting too much sun, or during a flare. To prevent over exposure to sun, I wear a large hat and just try to stay out the heat of the day.

Is it malar rash or rosacea?

The Lupus Foundation of America (LFA) provides this important discussion about malar rash, and compares it to rosacea:

“The butterfly blush or rash is a faint or prominent red rash over the malar area and the bridge of the nose. The rash does not go into the sides of the nostrils or down the fold between the nose and the outer part of the lips. These areas are always spared and look white in contrast to the red rash of the cheeks and bridge of the nose. Sometimes the rash is flat, and sometimes it is elevated. It may be in the form of red blotches or may be completely red over the area. The rash may be itchy, especially if it looks more like a rash than a blush. This rash is typical of SLE but is present in only about 30 percent of patients.

The butterfly rash is often confused by patients and by physicians with a similar red rash which also is over the cheeks. This rash is called acne rosacea. It does involve the areas of the outside of the nostrils and does involve the folds between the nose and the outer part of the lips. In addition, pimples may be seen on top of the red rash in acne rosacea.”

Malar rash or rosacea?

Treating malar rash is best accomplished by treating the lupus, and usually Plaquenil is prescribed.  Patients are encouraged to stay out of the sun to avoid excessive UV exposure, which triggers the rash.  Here are some tips the LFA recommends for reducing sun exposure:

1. The first rule is to stay out of the sun, especially during the middle of the day.
2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
3. The third rule is to wear a hat with a broad brim.
4. The fourth rule is to wear long sleeves.

Not make up, it is malar!

Lupus malar rash and an unforgettable social reaction!

Once, I had very uncomfortable and unforgettable moment at work because of my malar rash.  A woman who really didn’t like me or our managing attorney very much began belittling me in front of other co-workers.  I was bewildered as this woman began broadcasting her catty critique, “didn’t you get a little too carried away with your rouge this morning?” assuming the unbalanced redness on my cheeks was because I had used my cosmetics without skill.

I will never forget standing there, with my mouth gaping, wondering what in the world she was talking about! I wasn’t even wearing any cosmetics that day, not even lipstick.  Unbeknownst to me, my malar rash had erupted during my morning bus ride to work from the sun exposure during my three block walk to my office.  I had not looked in mirror since leaving my house, so I was caught completely off guard by her stinging comment.

Forgive the unkind, unaware, rude people

This woman had an unkind habit of making fun of people to try to lower other people’s opinions of them, I suppose in misguided efforts to try to make herself  look better.  It is sad that some people think that making fun of someone who is different, albeit diverse from themselves, is somehow a social “sport.”  I think that people who act this way should actually be pitied, and even prayed for, but not hated — because of their lack of wisdom, kindness, insight and understanding.  They reveal the true shallowness of their own soul by their rude acts, and they completely miss out on the rich blessings that kindness produces in relationships.

Fortunately for me, a couple of coworkers who were the intended audience for her unkind “put down,” instantly arose to my emotional defense.  Without me saying a single word in retort, a couple of other coworkers immediately engaged the woman and publicly shamed her for her rudeness toward me.  They spoke directly to her and harshly condemned her behavior!  Others standing by in the room joined in a spontaneous chorus of rebuke.  My coworkers who knew about my lupus recognized it as the cause of my overly red cheeks. After confronting my critic, they turned to me with many encouraging comments.  As for me, for once, I was speechless!

Grateful for lupus awareness

In retrospect, I was very thankful most of my coworkers were lupus aware, and cared enough about me to take up my cause and handle this woman’s rudeness through a little well-timed peer pressure.  Later, I overheard a “water cooler” discussion among other members of the office about their disbelief and disapproval of the woman’s social crudeness, judging it grossly inappropriate for the woman’s supposed professional, economic and social class.

This woman’s stack of degrees and professional position did not impress anyone that morning, but lupus malar rash certainly had an unexpected impact on my day.

[NOTE:  This post was inadvertently published unfinished at 7:00 a.m. using the pre-scheduled posting feature, before I had really finished writing it and including the personal story I felt was very important to share.  When I realized that this morning, I went ahead and completed it over coffee this morning, and re-published the updated version at 9:30 a.m.  My apologies for making major changes to a post after its initial release.  LA 5-22-2012]

%d bloggers like this: