Spare Me Your Ignorance And Save Me Some Understanding

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It’s that time of year for verifying my condition with disability. Not only is there a ton of paperwork completed by my doctors but I get a questionnaire with a phone interview as well. That’s where my rant begins, the phone interview. It’s 8am after a sleepless night due to hip pain from my current flare. The insurance agent handling my disability claim asked me to describe a normal day. I answered, Hmmm, that’s a tough question to answer. She replied, what do you do all day? In her tone of voice, the question seemed condescending as if to say ….What do I do with all my free time now that I’m on disability? In my head I quipped, she probably thinks I spa and eat bon bons all day. There were several ways to answer that question and the answer I wanted to give was screw you.. you have no idea how much pain I’m in every day or how difficult life is with limitations. But I gathered my wits and responded.. I don’t have normal days, it depends on what is happening with my lupus.
And then I answered with gusto… Some days are eat, sleep, medicate and repeat. Other days are doctor visits requiring tests, labs, or procedures like injections. And occasionally there are days when I might feel good enough to socialize (that means to go to church, or meet a friend for lunch or dinner or a movie with family. “Or” is the key word and it is a short amount of time like a couple hours only! If I’m doing well, I get to pick one outside activity per day depending on how “good” I feel. ) Shop til we drop has been off the table for years!)
Taking a breath, I continued, there are days that I spend coordinating doctor appointments, lab appointments radiology appointments, Rheumatology and Cardiology appointments and it can be exhausting. The mere fact that there’s obviously a problem that is requiring said appointment is just the beginning.
She replied with ok, obviously not getting the picture. Thought needs to go into how I will accomplish tasks such as distance from parking into office, stairs or elevator. For a normal person, this is a non issue therefore no need to plan ahead. On days when I have appointments nothing else is planned so I conserve my energy to accomplish that task. Then there’s follow up, calls and coordination of getting results, care planning with more appointments and insurance companies.
It really is quite ridiculous how much effort goes into managing a chronic illness. I don’t have a care giver. I’m on my own. I make adjustments according to how I feel. I’m forced to slow down from lupus.
I continued to try to explain by adding, How I feel changes every day and sometimes multiple times a day depending on what issues arise such as fever, pain or fatigue. On days when I experience all three at once, I’m limited to couch or bed. After I finished blurting out my tribulations, she responded with “you sound upset”. Unfortunately my curt tone of voice gave the insurance adjuster a clue to my feelings and I copped an attitude at that point responding, perhaps you should do some research on chronic illness or at least read my file from the past 10 years! The adjuster proceeded to ask for more details. I was asked why and how and could I work on a computer or take classes to obtain another job. Then, she asked, if I had attempted all treatments possible! That really rattled my cage! I responded, are you kidding? Do you think I enjoy feeling like this? Unbelievable!!!!!
Obviously this woman had not heard nor understood what I had explained. I understand they have a job to do however perhaps they should be required to have some medical training and absolutely need some sensitivity training. By the time I got off the phone 30 minutes later I was upset, frustrated and feeling hopeless. My blood pressure had gone from 118/74 to 160/88. I don’t think that helped my condition. Stress causes lupus to flare. I will be thanking the insurance agent for my upcoming flare or worsening of symptoms!
That’s where my rant begins. I’m a nurse with a chronic illness called lupus. Lupus is an autoimmune disorder. It also correlates to other immune diseases such as sjogrens and hypothyroidism. I have both conditions. My lupus can go into remission. It hasn’t! I’m not living the good life because I don’t go to work and receive disability. I’m limited not only by my health problems but income as well. I was once active and productive. I’m maintaining my home poorly compared the standards when I was healthy. I’ve learned to let go of expectations. I’ve learned to accept my limitations. Gone are the days of scrubbing vigorously, now a light cleaning with a Clorox wipe is all I can muster. I don’t have the energy to do it all myself nor do I have extra finances for hiring cleaning personnel or any other assistance. I manage by budgeting my income.
Instead of being healthy and active, I desperately struggle to find some normalcy in my life. I’m always searching for solutions to whatever is ailing me or receiving treatment for my symptoms. My body is in a rebellious state all the time but sometimes the rebelliousness has vengeance. If I could choose (IF ONLY), I would gladly go to work everyday, a job I loved and found rewarding by the way. Instead I feel broken and in pain almost all the time!
Perhaps I’ll include a letter with my written evaluation titled: Next time spare me your ignorance and save me some understanding:
– I did not get lupus by being irresponsible. It was not my choice!
– Being on disability is not like a great vacation! I struggle every day to do normal tasks. Sometimes getting out of bed, showering and making an easy meal is all I can accomplish. A good day for me would likely be the equivalent of a sick day for you.
– My emotions are frazzled. I deal with inability to work, perform normal tasks, financial stress, changes in family dynamics, isolation, and chronic pain along with fatigue and erratic heart rates.
– Grief is something I fight everyday. Grief for the loss of the person I once was. Sadness because every day life is a struggle to survive.
– My illness is complex. It’s like a hydra. You know that mythical creature that sprouts multiple heads when one is cut off two more grow in its place. It seems as soon as we get one problem managed another one pops up and when it’s really bad multiple problems arise at the same time. Management is the key word since there is not a cure for lupus.
– The debilitating fatigue I feel is more than feeling tired. It’s hard to explain to someone who is healthy. It’s the feeling of your body telling you to sit down or it will make you fall down. So I listen to what my body says however most days I have to push myself to accomplish simple.
– Too often, I “pay the price” for participating in activities that are important to family and friends only to require days or weeks to recover. I’m not lazy or crazy or trying to avoid activities. I need to rest often and may have to cancel plans last minute. Once severe fatigue kicks in, there is no other option other than to rest.
– There’s some form of pain in my body every day. But there are different kinds of pain I deal with regularly and some daily including headaches, joint pain, muscle pain and nerve pain.
– Occasionally I experience something called Brain fog. Sometimes I have difficulty communicating, I know what I want to say yet I can’t find the words to communicate effectively. Not only are there difficulties with word finding but also memory and concentration. With severe pain, it’s difficult to process anything!
– I live in constant fear. My immune system is overactive, my body is at war. Instead of attacking infections, my immune system fights my body’s own organs, joints, nerves, and muscles. Most of the time I’m on steroids to suppress my overactive immune system which leaves me defenseless against a minor cold. For example, a healthy person could catch the flu or a cold that will last a few days but for me it could last weeks to months then developing into a devastating dangerous infection.
– Believe it or not. It takes a lot of effort to manage my illnesses. I have a rheumatologist, nephrologist, cardiologist, endocrinologist, orthopedist, ophthalmologist, and occasionally visit an ENT.
– I have to be regimented to make sure I get adequate rest, avoid trigger foods, take medications at the correct times, all the while avoid stress to try to keep flares under control.
– I would give almost anything to feel “normal”… I’d like to eat pizza and shop all day then stay up late. I can’t because I know with 100% certainly that I will “pay for it later.”
– It’s a daily struggle to try to understand my body and to do ordinary tasks others take for granted. It’s difficult to find support and I’m surrounded by people who don’t understand my challenges. Some illnesses like lupus appear “invisible.”
Perhaps approaching people with compassion and support and attempting to understand chronic illness will be beneficial to all involved. I’ve also provided a link about fatigue. (https://wordpress.com/post/livingwithlupus2016.wordpress.com/76)
Thank you for taking the time to read this.

 

 

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It’s Ok….. or not!

5AB18011-33F5-4C0A-8F08-0A0CBB390ED8It’s Ok is what I tell myself to get by. Lying to myself is what I do to cope, or not. Survival is complicated when you have a chronic illness so my defense mechanism is lying to myself… and others.
If I’m being completely honest, I lie to myself every morning when I wake up. I start my day by telling myself it’s going to be a good day and I will feel healthy. I lie to myself saying over and over in my mind “I feel good” even though my joints hurt and I woke up just as tired as when I fell asleep.
Lies run rampant in my mind as I try to push myself to lead a “normal” life. I didn’t choose this condition nor do I enjoy having painful joints, palpitations and fatigue so I choose to push though. Push through to live as best as I can. The painful reality is I will never live a “normal” life. I was a single mom and nurse that worked 32 hours a week. I ran from morning until night just to get up and do it all over again the next day. My new reality living with lupus is about unpredictability. I never know what will happen from one hour to the next. There are many days I miss the person I used to be. The person that could pack up and hit the road for a little adventure. Now, I need to plan ahead, make sure I have my meds, check out if they have handicap accessibility, stairs vs. a ramp, how far is the walk in to the location from the parking lot. One of the things I miss the most is being spontaneous. My life consists of books, tv, movies and music. Not much living if you ask me, no concerts, festivals, hikes, scuba diving or beach activities. I didn’t get to live the life I planned. I miss out on a lot but I tell myself it’s ok. It’s not ok!
I have alot of less than emotions, feeling less than enough. I don’t want to be a burden or a bummer so I’ve learned to limit my time with others so they only see the surface that looks ok. My son and close friends have know how to watch for signs when I’m not feeling well. The tell tale signs like when I limp because of hip pain or unsteady gait when I get dizzy from palpitations.
I tell myself and others it’s ok. It’s not! Not only is life a challenge for me but it’s also challenging for my family. They say it’s ok too. It’s not ok!
Life is a struggle and I don’t want to admit the truth. I don’t want to be judged by others so I fake it as best I can. You know the saying fake it til you make it. Well, that’s my motto. I think there’s a lot of us that don’t let on about our problems, that tell ourselves everything is ok even when it’s not. It’s kind of a little white lie. It doesn’t hurt anyone. Besides, do we really need to divulge everything to everybody? Is it really lying when someone asks how I am and I respond with ok or good even though I’m feeling crappy? It’s easier to lie and say I’m ok than to let on that I’m not.
Every day is a challenge when you live with a chronic condition like lupus. I focus on what I can do. No sense in wallowing in the I can’t, or the past. In my mind, I’m healthy and can do anything but in reality I have limitations. It’s not ok but I fake a smile and move on. I remind myself to be grateful for what I have and that things could always get worse. Maybe it’s not really a lie and it’s all a matter of perspective. Once again I tell myself it’s all going to be ok. Maybe I am good, I’m alive to enjoy another day.

New Years Resolutions For a Lupie

AB8F4A70-AFCD-4E5D-9030-90A767A98651New Years is a time for reflection. Time to make adjustments for the past that will give the future a better outcome.
I’m glad I didn’t know how this past year would go, it was tough. The traveling circus of inflammation put down stakes and didn’t leave. I was in a flare for most of the year and on steroids. Yuk! It seems the more years that pass, the harder my lupus is to manage. Lupus has effected everything from my hair to my gut to my heart and of course my joints. It’s an awful disease!
So while other people are making resolutions to lose weight and save money, my resolutions are to live in the moment, cherish the little things that matter, to find peace and move forward as best as I can. Of course I need to lose weight and save money but there’s more important things.
My goal is to keep moving forward. To do so, nutrition is at the top of my list of priorities. I’ve read a lot about a Gluten free diet(Gluten free is avoiding wheat). I’m going to try it but it’s going to be difficult to cut out soft crusty Italian bread and semolina pasta!
Stress management is second on my list. Part of stress management is learning to accept the situation and knowing this too shall pass. Eventually I will feel better. Acceptance is part of finding peace. We are not the same as everyone else. Everyone acts and feels differently and that’s ok. Having faith helps with peace and acceptance by making time for daily prayer.
Then there’s exercise. It’s difficult when your joints feel like there’s glass in them but I know that I need to keep moving. Short walks in nature help me the most however not always possible this time of year living in Chicago. Below zero weather tends to isolate me. Warm water pools are a nice alternative.
Finally, appreciating simple pleasures. It’s the little things in life that matter. A delicious meal. Cozy blankets. Childrens’ laughter. Love of family and friends. Watching the birds leave footprints on the snow covered porch. Freedom to choose. Reading. Learning something new.
We will all do some ruminating this time of year. Let’s change our focus. Try not to fixate on problems/symptoms. Too many negative thoughts like, this is never going to get better will only make us feel worse. Too much rumination becomes neuroticism. It’s time to replace rumination with hope while focusing on the simple pleasures of life.

Wishing you and yours a happy healthy New Year 🎉

 

Winter Is Coming

99651738-BF42-40F6-B999-761B229042E2Winter is coming has a whole different meaning to lupus sufferers. However, it is similar to the dread experienced in Game of Thrones. For Lupus sufferers, not only do we need to be vigilant daily in trying to keep the traveling circus of inflammation under control but there is an increased probability of a flare that comes with seasonal changes, cold and flu season along with the holiday season. Especially if we are being treated with immunosuppressant therapy such as steroid or biological treatments. Stress is bad for everyone however for lupus sufferers, it lights us up like a Christmas tree! Exhaustion is a mortal enemy for anyone with an already unpredictable auto immune condition as well. And those consequences I would rather avoid! Management is a necessity.
My Survival Tips:
1- Be thoughtful of the consequences of your actions by knowing your limitations. As much as we want to be ‘normal’, we are not like everyone else. We need rest periods and to pace our activities. Plan out activities such cooking, decorating and shopping. Online shopping has helped me tremendously. I avoid the crowds, the item gets delivered to my door or sometimes it can be delivered directly to the gift recipient! Ask for help, family and friends could pitch in to accomplish the many holiday tasks.
2- Be social but not to the point your health is sacrificed. Pick and choose what you’re up for. It’s ok to say no especially if it’s going to run you ragged.
3- Emotional health is equally important as physical health. Keep an open mind. Put life into perspective and live your life to the best of your ability. Be grateful for the things that you have and can do. Learn to let things go. LET IT GO.. like the song says.
4-Sleep is crucial in maintaining optimal health with a minimum of 7 hours.
5- Nutrition is essential to immune system health sooo Eat healthy! Eat whole foods not processed. Watch out for salt and sugar pitfalls.
6- I believe vitamins are useful. Increase vitamins C and D which are known to boost your immune system. Use supplements as directed and consult your physician. I take 1,000mg of vitamin C and 10,000iu of vitamin D daily. Remember don’t take echinacea since it can make Lupus symptoms worse.
7- Cold and flu season is upon us so frequent hand washing is a must! Use warm water and soap to thoroughly wash between fingers and entire hand. When you don’t have access to soap and water, use hand sanitizer gel. I keep a small bottle attached to my purse.

Wishing everyone a healthy and happy holiday season❄️🎄

I Surrender

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I’m sooo sick and tired of lupus!
This past year has been a struggle with constant joint pain and fatigue, in addition to the usual palpitations. That traveling circus has come to town and it’s holding me hostage. My life is on hold just waiting for my lupus to get better. But it’s not getting better, I’m in a constant state of pain. It’s intolerable, more than the usual good days and bad days. Every day is a bad day lately. This has been a nasty flare. For the past few months, the fatigue is debilitating. I’m taking my prednisone as well as my regular medications. The steroids take the edge off the pain and inflammation. But every time the doctor tries to wean the steroid dose my pain gets worse. I’m tired. I’m angry. And I don’t want to deal with this terrible condition anymore! I surrender and am ready to give up. The traveling circus of inflammation is not leaving no matter what treatment I’ve tried.
Disease progression is difficult to manage and downright ugly. Treatment options are limited. Even my doctor has seemed to run out of options. I’ve been on steroids almost the entire year and we all know that’s not good. We know the implications of long term steroid use. There’s not only weight gain, high blood pressure and high blood sugar but long term effects like osteoporosis (thinning bones), enlarged heart and liver damage. We all know there’s a risk with any treatment, all medications have side effects. But the benefits are supposed to outweigh the side effects and risk. Instead, it seems like I’m trading one set of symptoms for another. The biologicals practically killed me and the steroids only help in high doses. I’ve tried every anti-inflammatory on the market from celebrex to ibuprofen. I occasionally take tramadol for severe pain but it’s a narcotic so it can become addictive. I certainly don’t need to add addiction to my laundry list of problems.
I’m at my wits end and frustrated as hell! It’s time to find something that’s going to put out the fires of lupus and manage the inflammation. I’ve recently tried cbd oil without much relief. My doctor has even suggested medical marajuana but it’s not covered by insurance and expensive. I’ve been doing some research. There’s an experimental treatment, stem cell transplantation. It has serious side effects which makes the procedure high-risk, also not covered by insurance and expensive. There’s also something called microchip healing on the forefront of medicine. That has hope to cure all illnesses from lupus to cancer.
Our bodies immune system is a difficult beast to manage. There’s a multitude of immune based illnesses from type 1 diabetes to celiac disease and of course lupus. In the meantime, Stem cell research gives hope to a future without lupus. It’s a bittersweet day because I doubt it will be available for my lifetime. It’s discouraging to think I will be plagued with these symptoms the rest of my life. According to The Lupus Foundation of America, Lupus is not a deadly disease, 80-90% of lupus sufferers are predicted to have a normal life expectancy. My question is… it might be a normal life expectancy but what kind of life is it?

How do you explain something you can’t see?

IMG_1206How do you explain something you can’t see?
There’s a disbelief that comes with a lupus diagnosis, not only from a medical standpoint since it took ten years of misdiagnosis and misdirection to get diagnosed but there’s denial. There’s a feeling of why me.. how could this happen. After so many years of thinking you’re crazy since the traveling circus of inflammation affects different joints at different times, it’s daunting but it’s also a relief.
There’s a also denial that comes from others, family and friends because they don’t understand. They don’t visualize the symptoms since they’re mostly internal, sometimes unexplainable. It’s not like having a broken leg, walking around on crutches with a cast on your leg, I look ok from afar. It’s not until it’s brought to someone’s attention or joints are compared that there is a little comprehension. For example, my left foot, right wrist and fingers are swollen and painful but when just talking to someone they have no idea I’m not ok.
I also experience self denial and frequently coax myself into activities, trying to make everything ok. Whenever I can, I pretend to be ok so I don’t bring everyone around me down, even though I feel the pain in my hands, wrist and feet on a daily basis. Kinda like the fake it till you make it mantra. Sometimes I can push through and other times the symptoms are just too debilitating to move.
I’ll refer to a previous analogy of an iceberg. The eyes can only see a fraction of the iceberg, just like only a fraction of lupus symptoms are visible. I think comprehending lupus is like trying to explain God. You can’t see it but you know it’s there. It’s not obvious but you can feel it. It’s just something that you accept even though you don’t have all the answers, nor is there a cure.
From the outside looking in, I look ‘normal’ but on the inside my body is at war. That traveling circus of inflammation wreaks havoc on my joints and sometimes organs like heart and kidneys. My joints hurt, I’m exhausted and too often I can’t do the things I want to. Currently I limit activities to grocery shopping or meeting up with friends since I’m so easily fatigued within just a couple of hours of light activity. Nowadays, I’m unreliable when it comes to activities. I never know how long I will be able to be up and about due to pain, palpitations or fatigue. There was a time that my home was organized. Everything had a place and everything in it’s place. Now there’s a different standard. It takes me all week to accomplish the same chores that a healthy person does in one day. I start and stop, taking frequent rest periods. Housework doesn’t get done as often as it used to. There’s dust and crumbs with most things out of place because I don’t have the energy to keep up with chores. Sometimes I feel shame and feel like a failure, other times I can rationalize that it’s out of my control. I just can’t physically get it done. These experiences have changed me forever. It’s hard to explain. It’s traumatic. There’s a bit of post traumatic stress that goes along with lupus and all that is endured. I think it goes without saying for any chronic illness. It’s the continual doctor visits, blood tests, imaging and treatments that cause anxiety and stress. There’s always a fear of the unknown, with lupus you never know what is going to happen next. I can wake up with mild pain and fatigue but by 3p develop a fever or joint swelling.
There’s also some identity issues to go through. Who am I now that I have lupus? This condition is impossible to predict. Impossible to covey. This disease is demoralizing. I’m not crazy, lazy, or weak! I’m not a hypochondriac, either. There’s the before lupus me that was energetic, tenacious and fearless. Then, there’s the finally diagnosed me that was relieved to have some answers and direction. And now, I’m going through the acceptance of disease progression which is discouraging. It’s acceptance with a little hopelessness, thinking that this will never get better. Times like this are difficult to be hopeful when having identity issues. I’m so far from the person I used to be that I don’t know who I am sometimes. Once a strong, tenacious vivacious woman, now a broken shell of who I once was. It’s a lot to accept. Support groups, friends and family can help sort out those feelings, also, seek professional help if necessary.
I used to pray for more time. Time to get everything done. Now that I have nothing but time, I don’t have the energy. I guess the joke is on me, not funny!
The only thing I’m confident of is with faith, hope and love everything is possible.

For with God, nothing shall be impossible-Luke 1:37.

 

 

Disability Can Be A Dirty Word

IMG_5656There’s a stigma that comes with disability, sometimes judgement. Disability doesn’t mean you don’t have integrity or a moral code. In fact, it’s usually quite the opposite. I’ve lost my career, my previous lifestyle, relationships, and even my dignity at times. I didn’t choose this life, my body betrayed me and for that I’m punished. I’m not lazy or uneducated or crazy, but once a functioning member of society. I had a successful nursing career in which I worked as nursing supervisor to trauma nurse. I’ve overcome more in my life than your average person yet having a disability has a shame that makes you feel less than. Less than normal. Less than acceptable. Less than worthy. I struggle on a regular basis with accepting my disability.
There are different degrees and kinds of disability, from learning disabilities to severely disabled. For me, it means less than functional and sometimes embarrassing. Actually, the definition of disability is a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.
The WHO (World Health Organization) estimates approximately 15% of the world’s population lives with some form of disability. Within that 15%, 2-4% experience significant difficulties in functioning. According to Census 2000, 49.7 million people live with some type of long lasting condition or disability. They represented 19.3 percent of the 257.2 million people who were aged 5 and older in the civilian non-institutionalized population — or nearly one person in five.
Living with lupus is challenging on a daily basis. Fatigue, joint pain and swelling, heart palpitations, multiple medications, endless doctor appointments and treatment options dictated by different levels of the condition, symptoms cause some of my difficulties. My condition isn’t always visible. Accepting the way lupus changes life is a large pill to swallow.
People with disabilities have a new view of reality. I’ve watched Veterans, true wounded warriors that leave me in awe. Their fight and determination are an inspiration. I’ve also had the privilege of volunteering with Special Olympics. Those athletes are inspiring as well. I’ve never heard “can’t do” from them. They say “not yet”, they persevere. I learn what it means to have heart when I interact with those folks.
Learning to keep a positive attitude about disability isn’t easy but a necessity. It’s taken many years but I’ve learned to cope with being cheated by illness. I’ve learned to embrace my situation, learning to let some expectations go.
Let go of that “Less than” feeling… Remember your body hears what your mind is saying.
I’ve replaced expectations with the here and now. Stopped comparing myself to how others get along but focus on what I can actually do.
Don’t forget.. When you say I can’t, then you won’t! Say “not yet!”
Don’t give up.
Believe all things are possible and do your best to survive, then thrive.
Keep trying til you get it accomplished.
Don’t let circumstances define you but cope the best way you can and find peace. Whether it’s medications, treatments or activities, we need to learn to do what is right and what is right for you may not be right for the next person.
Be flexible with expectations and outcomes.
It’s time to focus on the future instead of looking back at what was. Knowing there are many variables and possibilities helps us accept the roller coaster of life.

Love this Charles Darwin quote “it’s not the strongest of the species that survive, not the most intelligent but the one most responsive to change.”