Plain and Simple

Plain and Simple, I’m Discouraged

Every day has been a battle lately. I go to bed hoping that tomorrow I will hop out of bed and say “Good morning Rudy” to the dog and notice what a beautiful day it’s going to be. But, for the past six weeks or so, I think of the obligations I have for each day and hope that I feel better by the time they start.

Generally I try to blog about how to stay as healthy and happy as possible in spite of having lupus. No one likes to read about how rotten it is to be sick, right? Except when you’re sick sometimes it helps a lot to read that you’re not alone. I won’t say the trite cliché that we’re all thinking about misery loving company, but amidst my sadness I read a blog about feeling tired of dealing with lupus and it actually lifted my spirits a little. Writing helps me cope, so I thought I’d write about how much it sucks to feel like shit all the time, and see if it didn’t help someone else a little bit.

I wake up and take stock. If I wake up and have to take stock, it’s not a good sign, because it means I’m not jumping out of bed looking forward to the day. It means I’m going to have to search for energy rather than just take it. Somehow try to fabricate it rather than just use it knowing that more will come along later. Drink coffee with hopes that it will lift me rather that perk me up. It doesn’t.

I blame the fatigue on the pain when I try to describe it to people, but they’re really two different experiences. If you think of your period though, and how the pain makes you exhausted, that probably gives you an idea. They’re separate, but they are synergistic, one compounds the other.

One of the things that bothers me is that I’m gaining weight. I recently lost 35 pounds, I worked really hard at it and I felt great about it. Then I was diagnosed with lupus because my disease had a ‘breakthrough’ (increase in symptoms) that made it unmistakably lupus (the butterfly rash), and I have been less active, more fatigued, more frustrated, and getting fatter. The scale has been ruining my day right first thing in the morning. It shouldn’t, I preach about healthy body image and weight stigma, but I’m just as sensitive about it as the rest of the female population. I just understand it a little better, which doesn’t change it much.

Manufacturing self-esteem is a difficult thing to do. I know what it feels like to feel good about myself. Feeling sick and fatigued is an automatic self-esteem crusher. I try to do things that I know will help, like exercise, write, read something that will educate me and help me help others, volunteer, or play with my cute little dog. So many times though, it’s a losing battle. That doesn’t mean I won’t keep trying, it just means I’m frustrated and tired today. Hopefully, tomorrow I won’t be, and I’ll jump out of bed and say “Good morning Rudy!”.

Work hard, play hard, nap hard.

MarthaImage

Mother’s Day

My last appointment to the Rheumy was a breeze, as usual. My regular doc was behind schedule so I saw a Physician’s Assistant, who I liked a lot and prescribed an anti-inflammatory that improved my world. LESS PAIN made me a happy camper. My blood work, however, showed abnormal kidney function, due to too many anti-inflammatories (probably), so I got a call to STOP taking them. OY!

 

So, now I am in a world of pain. Not 8-10 kind of pain, but constant 6-7 pain, that makes me tired and discouraged. I have Mother’s Day weekend planned with my daughter, who lives an 8 hour drive away. I have a banjo workshop planned in that same city that weekend (I teach banjo-whoddathunkit), so the weekend will be fun and exciting, but I’m dreading it because I know how exhausting it will be. Then I start a new part time job when I get home, also exciting but also taxing. With no relief on the pain front I want to cancel all of them!

I’m the one who arranged all of the above events. I’m the one who doesn’t want to let lupus make me any less of who I am. I’m the one who insists on pushing myself so I don’t feel like less of a woman.

I’m going to have to find a way to feel like my productive self and still leave room for lupus. Lupus is demanding. It needs time and energy to deal with. It takes. In a strange way it also gives, because when you have less time and energy to work with you have to prioritize differently. The LONG WEEK I have coming up is full of activities that I am going to enjoy, but the fear of exhaustion and pain immediately detracts from the joy of anticipation. I DON’T WANT to give lupus more than it demands. I only want to give lupus what I HAVE to give lupus.

Wellness means balance. Lupus now holds a slice of my wellness pie. It has to be factored in to all things fun and necessary. Make way for lupus! This blog also holds a slice of my wellness pie, because the time I spend writing about how I’m dealing with this disease contributes to my wellness as much as having lupus detracts from it. It’s that important to my health.

So I’ll go to all of the Mother’s Day activities, and try to relax and have fun and not worry about how tired I’m GOING to be. I’ll try.

Work hard, play hard, nap hard.

Martha

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I Finally Found It!

My regular rheumy doc was backed up, so they asked if I’d like to see one of his younger Physician Assistants. Knowing that as some point my doc was going to retire, I said yes in the interest of forging a new rheumy relationship. Dale was very nice, handsome, present, and had obviously gone over my records before he saw me. I have been having more pain lately, and it makes me tired and cranky. In an effort to curb the joint aches, I’ve been taking a lot of Advil and Aleve. Too much of it. He agreed, and prescribed an anti-inflammatory that he thought would do a more effective job. I collected my forms and drove home.

Over the next few days I noticed a marked improvement in my symptoms. I wasn’t so tired for one thing, because I wasn’t in so much pain. What a relief! I was doing more and feeling it less. Wishing I’d tried a new doc sooner, I refilled my script for the anti-inflammatory for 90 days on the cheap. OH HAPPY DAY!

I had blood work done at my last appointment, and when they called I wasn’t worried because that happens. The receptionist told me that my liver enzymes were elevated and had I been taking a lot of Ibuprofen or other NSAIDS? Yes, I had. Well, stop. OK, but I just started a new prescription of blankety-blank and its working great! Stop that too. In six weeks we’ll redo your blood work and reassess. OY! OK, I said meekly. Sorry, she said.

Now I feel like shit a lot of the time and I can’t do anything about it. It stings because the drug was working so darn well that I finally felt pretty normal. No good. The good part is I can compare what it’s like with NO anti-inflammatories at all (it sucks), and after six weeks start using my drugs again, or, if I can’t do that, I’ll start using turmeric, ginger, green tea, and all of the many other natural anti-inflammatories out there that I have yet to try, one at a time, so that I can truly know which ones are working and which ones are not. If I had my choice I wouldn’t do this experiment, but since I do trust my doc I’ll do it. I don’t want to mess with my liver, you know?

Work hard, play hard, nap hard.

Martha

But I Don’t WANT To Do All That Stuff!

This is the fourth in a series about “Common Themes of Adult Lupus”, in other words, issues that we all face at one time or another. “Treatment Adherence” is about how you choose to DO what the doctors TELL you to do, or not.

Treatment Adherence- Treatment adherence improved when people believed the medications they were prescribed were having a positive effect on preserving health, while good rapport with doctors boosted adherence as a show of respect and trust.  Staying on medication regimens became a factor when patients began to doubt the medication’s effectiveness or when financial burden interfered with their decisions. 

For any number of reasons, the decision to stay on a medical regime can be daunting, challenging, and expensive, to say nothing of a big pain in the ass. I hate having to do all the shit I have to do to keep my lupus under some modicum of control, but I have learned, the hard way, that I’m the one who pays the price when I don’t. When I was diagnosed with scleroderma, the second of my autoimmune conditions, I was put on Plaquanil, the anti-malarial drug that is prescribed to many lupus patients. It really messed with my stomach, horrible diarrhea and cramping, but I kept at it by varying the dosage to balance the side effects with the symptom relief. The thing was that the symptom relief didn’t seem all that enticing, so it wasn’t’ worth it. I had had it with the side effects, so my doc said to go off of it for a week or two and try again. Within a few days, the pain in all of my smaller joints was back, and I’ll never forget how harsh it was! Comparing the two together in a short space of time made me realize what a damn great medication Plaquanil is, and just how much it was helping me. I now know that if I wasn’t on it I would be in a world of hurt, and I’m thankful for it every day. I take an antidiarrheal medication from Costco (half of tab every day with my other meds) and I’m good to go! The second best thing about Plaquanil is that it’s dirt cheap. I love Plaquanil. I want to marry Plaquanil!

A few other things I’ve accepted as necessary over time are to stay out of direct sunlight, and to inspect my skin every day for lupus rashes or other signs of trouble. Direct sunlight makes me sick, and then later on gives me hives. Forget a tan! I use lotion with tanning color in it, and it gives me enough color to look “healthy” without having to go out in the sun (I don’t want to look like a fish belly, all white and cold looking!), and it contains sunscreen and moisturizer. I want to marry my lotions too, and they smell a lot better than Plaquanil!

Inspecting my skin is no big deal. When I wash my face I use a headband to keep my hair out of my face and I just check in the mirror for spots. I see the backs of my hands all day. The rest of me (that I can see anyway) gets a once over every other day when I shower (not every day because it’s too drying for my skin and hair), and the parts that I can’t see I don’t worry  about unless they’re irritated, in which case I use lotion and see how it goes. I use a Q-tip to apply Aquafor (Amazon again) to my nostrils every day to prevent nose sores, which are a constant problem without it.

All in all it is time consuming, but not hugely so. The part that’s the worst is the adaptation and experimenting until you find the right balance. After that it’s just part of a routine that I hardly think about, like doing breast exams or brushing my teeth. In the long run, it’s SO worth the time if it means I’ll be happier and more comfortable most of the time! Pain in the ass? Yes. Worth it? OH YEAH.

Work hard, play hard, nap hard!

MarthaImage

Lupus and Societal Stigma and Indifference

This is the third in a series of issues that most lupus patients face. Societal stigma and indifference are subtle most of the time, but that doesn’t make them any less powerful. They are communicated in the way people look at you when you tell them you have lupus. The way they change a little after that. The way they kind of want to get away from you, or look pityingly at you. There’s really nothing you can say to explain it in the moment, so you learn to be careful who you tell.

3. Societal stigma and indifference-. Societal stigma and indifference developed when others trivialized the illness, when patients felt ostracized socially, or when family and friends became overprotective or intrusive.

This is a really personal thing to talk about. Lupus has a reputation of being a “whiner’s” disease. It’s one of those diseases that a lot of self-absorbed, hypochondriac women have. For several decades it was thought to be “psychosomatic”, or “all in your head”. That kind of reputation takes a long time to fade, even when it is widely known that lupus, and other autoimmune diseases’ are, in fact, real, and can have devastating effects on health for the people who have them. It’s also known now that it is NOT contagious, but the association of lupus with HIV/AIDS is persistent, and can still hang over our heads like a curse.

Trivializing lupus can be very hurtful. It’s also hard to know if someone is making more out of their condition than they are actually experiencing. Y’know, “Oh poor me” syndrome. I downplay my symptoms, because I don’t want to be thought of as sick. Some people wrap themselves up the idea of being sick and it becomes their whole life. Sometimes it has to be your whole life. It’s up to you how much you buy into being sick. I strive to be as well as possible.

People do sometimes become overprotective of someone who is ill, and want to protect them from anything that could harm them. Of course that’s impossible, and the key to helping someone who is ill is knowing when to leave it up to them and when not to. No one can help you to help yourself by becoming an overbearing presence in your life. You have to take the wheel at some point. The will to get better has to come from within. That’s why when people tell you that you need to change your health behaviors it doesn’t work until you believe it yourself.

As lupus patients we all deal with these issues. Some more, some less, depending on how public you are with your illness. I know that writing this blog helps me in ways I never imagined. It gets all of the “Oh poor me” out of me. Once I write about it, I don’t feel encumbered by it anymore. It’s become my therapy. I hope it helps you too, because helping someone else is what makes me happier than anything else.

The next issue in this series is “Gaining Resilience”, which is where we start to move into action and start fighting for our quality of life.

Work hard, play hard, nap hard!

Martha

I Lie a Lot

…..So I lie a lot.

BEFORE I was diagnosed with Guillain-Barre Syndrome (GBS) I was a Health and PE teacher at a community college. I was a role model for health. I was in great shape and didn’t even have a doctor, except my OB GYN, because I never had any health issues. I considered myself a success, and I was at the top of my game. Good job, nice home, free time in the summer, and good health. It was pretty perfect.

It started with back pain, but who doesn’t have that? Then, boom, I started falling down and got so sick I couldn’t walk. No one expects it to happen to them, especially people who are dedicated to their health. I was misdiagnosed with Lou Gehrig’s disease (ALS) at first, so I thought I was dying. I could not bear the thought of becoming debilitated in front of all of my former health and PE students, so I moved away to die in privacy and with dignity. That was just the way I had to deal with it.

When the diagnosis was changed to GBS and I learned I was going to live, and recover much of my health, I was elated, but I had a long road of hard work ahead of me. It didn’t scare me to do that work, I like to exercise after all, but it was a far cry from being a fitness buff at the club. It was a private battle at home in the living room and at the physical therapist complex. Little tiny exercises at first; that felt like climbing Mt Everest. The progress built though, little by little I could walk, then walk to the stop sign down the road, then up a little hill in the parking lot of the health club where I would eventually take Zumba classes.

In the meantime, my immune system decided to turn against me, wholeheartedly, and fight my progress with gusto. I was diagnosed with several conditions, all autoimmune related, and all causing joint pain, fatigue, and general frustration. I looked fine though. Everybody said so. When I was sick with GBS I looked terrible all the time, pale, weak, just gray around the edges like I was going to die. I didn’t look like that anymore, but I didn’t have any stamina behind the big smile. So I lied a lot. I said I felt great! Nothing can stand in my way! I’m back!

Anyone with an invisible disease or condition knows what I’m talking about. If you want to feel good for something, you have to prepare by sleeping as much as possible beforehand, making sure it happens during your best few hours of the day, and having an escape and collapse plan in place for afterwards. It sucks, but there it is. You lie a lot.

I’m going to have to lie today.

Work hard, play hard, nap hard!

MarthaImage

So, I’m a Geek

ImageOK, so I’m kind of a geek when it comes to research. As a Health Educator, I research topics about health, especially ones of interest to me personally as a women, in my 50’s, with several autoimmune diseases, and someone who struggles with weight, self-esteem, and the other usual things. When I was diagnosed with lupus recently, I dove into researching and learning as much as I could about the disease and how to manage it. My specialty is Wellness (aka balancing the aspects of life in a healthy way) so everything I read is tainted with my wellness glasses.

 

As I started to read about lupus I thought that my work should be used to help others with the autoimmune conditions, so as I started my “toolbox” of useful articles and materials, I also started a Facebook page “Wellness With Lupus” and this blog. My latest topic has been working with lupus, and facing the difficulties it poses, and when and how to cut back on work while preserving your health, your income, and your self-esteem. The statistics regarding lupus patients who face poverty in later life are appalling. We are often diagnosed early in life, before we have time to develop retirement incomes and long term security. Most of us are women, we live longer than men yet we marry older men, so we end up alone, and with limited income anyway, with or without lupus. With lupus, we also end up on disability early, with chronic health problems. See the dismal picture?

Wellness With Lupus has several articles about working with lupus, disability and what criteria the Social Security Administration uses to decide if we are eligible for benefits, and how the American With Disabilities Act can help you to keep your job if and when you disclose your illness to your employer. All scary topics, and ones that are hard to find useful information about.

 

So, I’m a geek with lupus, and you can have my stuff. I do my utmost to make sure the information I post is accurate, up to date, and from reputable sources. My most important advice is, work as long as possible to secure your future, be careful about disclosing your condition to your employer because they might not look favorably on having to accommodate your condition and it’s unpredictable flares, and be proactive about your own health. YOU are the boss of you and your lupus. Take care of yourself, and talk to your doctors about your symptoms. Don’t whine, talk. Write things down. Take control of what you can, and try to maintain that “wellness balance” that is so critical to your happiness and vibrancy.

Work hard, play hard, NAP hard.

Martha

Krabi – Island Hopping and the Photo Bomb of the Year

Bernie's Travelers.

As we mentioned in the last post, Andrew and I caught a bug at the end of our time in Phuket. Fortunately, Andrew’s symptoms seemed to wear off relatively quickly, but my bug proved to be more resilient. I started my dose of big-girl antibiotics that I’d brought from home the last night in Phuket and we headed off for Krabi the following morning. Although traveling on a day that I felt so crappy was not fun, luckily it was only a 30 minute minivan ride and 2 hour boat ride to our next destination. And while I’m counting my blessings, I have to say Andrew was a wonderful nurse and I really don’t know what I would have done without him.

Our accommodations in Krabi consisted of a private bungalow in a nice, quite area about a 5 minute walk from the Ao Nang beach and 20 minutes from…

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It’s Not About the OUCH

It’s Not About the OUCH

If you were to put on my pain like a fat suit, you would probably say, “OMG, how do you live like that!” Well, it comes on slowly, year after year, and I’ve learned how to distract myself from it, and to exercise regularly to keep my joints as healthy as possible, and to take pain meds proactively. I’m sure other chronic pain people would tell you the same things and more.

We, here in Idaho, have had our winter come on suddenly this year. It made me very aware of how the pain increased exponentially as the temperature dropped. The thing that made me really discouraged was that the newest thing to cope with was waking up in pain. In the past the mornings were always a time of rejuvenated energy and minimal discomfort. It still is, compared to evenings, but it takes a little more determination to get up and start doing things.

The weather does, in fact, affect joint pain. In light of that, let’s all move to Arizona, right? Just think, beautiful weather every day, jumping out of bed and taking a brisk walk before the heat of the day, returning to a home that is the perfect temperature all the time with very little intervention, and NO PAIN! Well, no. First of all, your joints are still going to hurt, no matter where you live. Maybe less though. Secondly, if you’re the only person you know in your new location, what fun is that going to be? And then there’s MOVING! Ug. There are a lot of factors that go into a happy life, and being in less pain is only one of them.

AS fruit loopies, we need to do all that we are able to do to reduce the damage occurring in our bodies. The first step is becoming more aware of the symptoms, when, where, and why they occur, so that we can manage them effectively. That’s OUR job. I’m going to keep a pain journal, in the hopes that rather than focusing on the pain, I will be able to check in with it, twice a day, and then disregard it as much as possible and get on with the fun of life. I’ll include a copy of the pain journal I’m going to use. My doctor can help me more effectively with that kind of information to work with, and I can help myself by doing all I can, on a daily basis, to balance the factors involved in keeping pain in the compartment it belongs.

The pain is here to stay, but the joy and the happiness is all around us too. We can choose what to focus on. Work hard, play hard, nap hard!

Martha

 

ONE WEEK PAIN DIARY FOR_____________________

 

A pain diary may help you and your doctor find out what makes your pain better or worse. Use the diary and pain scale below to keep track of when you have pain, how bad it is, and what you are doing to treat it.

 

Pain scale rating:

0        1        2        3        4        5        6        7        8        9        10

 

No pain        Mild            Moderate     Severe        Worst pain imaginable

 

Daily diary

 

Date:                    Time:

Pain scale rating:

Daily diary

What made the pain better today?

Medicine side effects:

Medicine and dose:

What made the pain worse today?

 

 

 

Date:                    Time:

Pain scale rating:

Daily diary

What made the pain better today?

Medicine side effects:

Medicine and dose:

What made the pain worse today?

 

Date:                    Time:

Pain scale rating:

Daily diary

What made the pain better today?

Medicine side effects:

Medicine and dose:

What made the pain worse today?

 

Date:                    Time:

Pain scale rating:

Daily diary

What made the pain better today?

Medicine side effects:

Medicine and dose:

What made the pain worse today?

 

Date:                    Time:

Pain scale rating:

Daily diary

What made the pain better today?

Medicine side effects:

Medicine and dose:

What made the pain worse today?

 

Date:                    Time:

Pain scale rating:

Daily diary

What made the pain better today?

Medicine side effects:

Medicine and dose:

What made the pain worse today?

 

Date:                    Time:

Pain scale rating:

Daily diary

What made the pain better today?

Medicine side effects:

Medicine and dose:

What made the pain worse today?

 

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Nothing Changes, Except Everything

Nothing Changes, Except Everything
Getting a lupus diagnosis sucks, but it answered a lot of questions. Like why I have to take a nap every day, when nobody else does. And why when I go out in the sun for any length of time I feel so poisoned afterwards. And why I have these little areas that I want to scratch until they bleed, and I have to put gloves on to stop myself. This brings me to gloves, and why my fingers turn “white like the dead” if I get too cold. None of those idiosyncrasies really bothered me in the past; I just learned to work around them. When I got the diagnosis and started researching lupus, I said “aha”. So that’s why.

It helps a lot to have information to work with. That’s actually why I’ve started my blog and my Facebook page. I like to do research, but other people don’t, so I thought I might as well share what I learn along the way. I’m also a health educator, so I have a lot of background knowledge to rely on. This is a whole new turf for me though, being sick instead of a healthy role model is NOT my cup of tea. But then, whose cup of tea is it? I don’t know anyone who would choose to have autoimmune diseases, although, those people are out there. Being sick as a lifestyle is an interesting topic, which I will address in another post. Don’t let me forget, because I surely will. Memory is another one. Lupus fog is a constant thread running through my life.
I’ve learned that the naps are because lupus causes fatigue, or “malaise” as it’s entered into my chart. Most days I feel good in the morning, and drink coffee and do normal things until about 1 or 2pm, at which point I start snarling and acting out and need to sleep. So I do. Then I get up, and feel good again. In the past I used to try to fight it, at work it was torture, and when I got invitations to do things at that time of day that were important I could do it, I just really didn’t want to. I finally came to the conclusion that I wasn’t going to fight it; I was just going to take naps. This produced my motto, “work hard, play hard, nap hard.” On long drives I hide my car under a tree, turn my phone off, and lay down in back.

napping reynauds fingers sun protection double hat

The sun is our comfort and our enemy. Everybody loves a sunny day, especially if you live in a climate where it isn’t always sunny. I used to live on the coast of Oregon, and when the sun shined is was like everyone was a better person. Smiling, waving, petting dogs, it was like being at an inspirational yoga convention or something. For us fruit loopies though, the sun is best enjoyed with care and in moderation. The care part means sunscreen (let me know if you find a kind that isn’t yucky) all the time on all exposed areas of your skin. Gone are the days of baby oil and Sun In. No more bikinis. Too bad, huh? I don’t have a bikini body so it’s a relief. Big, straw sun hats that ruin your do. Long sleeves, long pants, closed shoes, not sexy. If you’re at the stage of hot flashes you’re living in hell. The price we pay for not subscribing to those cover ups is high though, too high for me. I feel sick after too much sun. It’s like a hangover that only time inside will cure. Then comes the rash, and the hives, and the promises to myself never to let it happen again.

The “white like the dead” fingers is a condition called Reynaud’s Syndrome. It looks like your fingers are frostbitten, which used to happen occasionally in Vermont where I grew up. This is transient though, thankfully, because it looks and feels horrible. Your hands are where you see it, but it happens to your whole body. The antidote is warmth. Keeping your core warm all the time, and your hands and feet warm even more of the time. I have little gloves with the fingers cut out all over the house and in my car and my husband’s car. Having lupus can be messy.
So, armed with information about why all of this quirky stuff is happening, I feel better about it. Less self-absorbed, more responsible. It is our job, after all, to manage our lupus. If we don’t, we’re the ones who pay for it, and it’s usually a pretty steep price. So, work hard, for a few hours a day, play hard, with a big smile, and nap hard, whenever you need it.
See you next week fruits.