Steroids … A Blessing And A Curse

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I am a 54 year old woman that feels like I’m living in the body of an 84 year old.  Most people my age have a GP (general practitioner). I, on the other hand, have as many doctors as a geriatric patient. My specialists include a Rheumatologist, Endocrinologist, Cardiologist, Nephrologist, Ophthalmologist, Dermatologist, Gynecologist and an Orthopedist. The most important specialist is my rheumatologist. I don’t see a GP since most of my symptoms relate to lupus. Besides most of my doctors defer to the rheumatologist since lupus effects all aspects of my healing process.

I’m in pain most of the time these days. The traveling circus of inflammation has put down stakes and refuses to leave. Most of my pain is in my joints, although an overall achiness accompanies a flare.  Recently, muscle pain and tightness has been added to my list of complaints. There’s headaches too, also a common symptom of lupus. And photosensitivity (sensitivity to light) goes along with that. Also, there’s generalized fatigue to compound any other symptoms. On top of all that, lupus causes damage to many different organs in the body. This disease affects the body’s organs like heart, kidneys and lungs. Pericarditis is one of my chronic conditions that lupus has caused. That’s a conversation topic for another blog.

The symptoms of lupus include:
*Joint pain and stiffness, with or without swelling
*Muscle aches, pains, or weakness
*Fever with no known cause
*Fatigue
*Sun or light sensitivity
*Hair loss
*Butterfly-shaped rash across the nose and cheeks
*Other skin rashes
*Purple or pale fingers or toes from cold or stress
*Headaches
*Photosensitivity
*Dizziness
*Sores in the mouth or nose (usually painless)
*Dry or irritated eyes
*Unusual weight loss or weight gain
*Trouble thinking, memory problems, confusion

Less common symptoms include:
*Anemia (low red blood cell count)
*Pleuresy (Chest pain when taking a deep breath)
*Pericarditis (Chest pain with palpitations and rapid heart rate)
*Nephritis (kidney inflammation)
•Blood clots
•Seizures
•Depression
•Strokes
(*denotes symptoms I have experienced or currently experiencing)

There are treatments for lupus however, there’s currently no cure for this debilitating disease. Medications are essential to my survival. I take Plaquenil (anti-malarial medication that decreases inflammation by decreasing the overactive immune antibodies that attack healthy cells). It’s supposed to keep lupus symptoms in check. Even though I’ve been taking it since I was diagnosed with lupus in 1997, it isn’t enough to prevent flares these days. My immune system is seriously confused! However as the disease process worsens, I take corticosteroids as prescribed. Prednisone helps reduce inflammation and swelling. I’m on steroids more often than not these days. They help decrease inflammation and shorten the length of flares. Prednisone causes cravings and makes me ravenous, hence weight gain. The other terrible side effects are mood swings. It’s horrible to go from ok to crying to angry for no particular reason. I hate the way steroids make me feel besides long term use can cause a myriad of health problems. I’m on prednisone more often than not as my condition progresses. Prednisone comes with a laundry list of problems. Too often I trade one set of symptoms for another. Therefore, I think of it as a blessing and a curse. Steroids decrease inflammation and give me more energy however the side effects are terrible.

A list of common side effects:
(I’ve experienced most of these at one time or another.)

-nightmares
-restlessness
-headache
-nausea
-vomiting
-thinning skin
-acne
-trouble sleeping
-weight gain

Serious side effects:
-changes in emotions or moods swings, depression
-changes in vision
-eye pain
-decreases immune system causing increased susceptibility to infections; fever or chills, cough, sore throat
-high blood sugar -symptoms
increased thirst
passing urine more often
feeling sleepy or confused
-swelling of your ankles or feet

Also, I use alternative therapy including vitamins and minerals. In addition, My heating pad is used on a daily basis. When there is severe swelling I use ice too. Rest is essential to recovery. Also, a TENS unit helps distracts the muscle pain signals. Epsom salt baths helps loosen up my muscles and decrease my pain. Rest and more rest!

Day in and day out, year after year, lupus never goes away. However, I refuse to allow lupus stop me from living!

Live in the moment. Be present. Don’t let life pass you by waiting for perfection. We are all living on borrowed time 💝

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Lupus Awareness Month

pexels-photo-1021685.jpegMay is Lupus awareness month. This is one of the few times this mysterious condition comes into public eye. Statistics show that 2/3rds of the general population know little or nothing about lupus. Systemic Lupus Erythmatosis, lupus, SLE is a life long condition without a cure.

According to the Lupus foundation of America, 5 million people world wide are living with Lupus (1.5 million people in the United States). Lupus is a disease where the immune system is overactive therefore attacking healthy cells. As a result of this battle, an antibody is formed which causes inflammation. That inflammation can affect all parts of the body from a skin rash to major organs like heart and kidneys. It also affects joints causing pain and swelling. Fatigue is the most common complaint. Lupus symptoms vary per person since every illness is different depending upon each individual. This cruel condition can go from remission to ravaging illness within hours. Flares can last from days to years. Treatments from plaquenil to steroids can have severe side effects. Most people don’t know that chemotherapy isn’t only for cancer patients, it’s used as an immunosuppressant for lupus. This mysterious illness is not only difficult to identify, it’s difficult to explain to others and often called an invisible illness. Lupus is not contagious, meaning cannot be transmitted to anyone.

If I had to choose one word to describe lupus I would use upredictability. I never know how I will feel hour to hour. I’ve nicknamed Lupus calling it a traveling circus of inflammation. Inflammation can show up anywhere at anytime. That kind of uncertainty, not knowing what will happen next can cause anxiety. Also, the sense of loss can be overwhelming. There’s loss of activities I once enjoyed, in addition to the inability to be active. I’ve experienced the loss of my career as a nurse where I enjoyed caring for others. Most days I’m reduced to being a home body. Once an active member of the community, now there are days when I need to ask for help. It’s a humbling experience. It’s also tanked my relationships. It takes someone very special to deal with the effects of lupus.

It has taken me many years to come to terms with who I am with Lupus vs. the life I lived before Lupus. Living with limitations is all about knowing who you are and what you are capable of along with dealing with knowing the consequences of overdoing it. Important things to remember when dealing with lupus are; finding the right rheumatologist, finding the medications that work on you, limiting stress, maintaining good nutrition, avoiding sun and florescent lights, learning to listen to your body and finally accepting the consequences of your decisions. Every day is a new adventure when you live with Lupus, dealing with that traveling circus of inflammation. It’s a mysterious and debilitating disease that affects many parts of my body and therefore how I live my life. Lupus is exhausting but in order to survive we need to fight. Let’s get the conversation started to make a difference. Imagine a life without lupus.. imagine a cure for all autoimmune diseases. It’s time to illuminate this illness especially during Lupus Awareness Month🦋

One Step at a Time

The dreaded traveling circus of inflammation is forever growing and changing. Struggling with lupus for over 20 years has taught me… Nothing is ever easy! Lupus exacerbates the simplest of medical issues. There are times that my stubbornness and denial cause more problems. I’ll admit that I’m a bit of a procrastinator. I’ve learned that denying or pushing through pain is considered self-destructive behavior. It’s been a hard lesson to learn.

Per lupus foundation of America, 90% of people that have SLE will experience joint and muscle pain. I had a pain in my foot. Simple right? RICE (Rest. Ice. Compression. Elevate.) which I use whenever I have any new joint inflammation. After a joint has been inflamed for more than 72 hours, it’s routine to switch to heat.

After a couple weeks without improvement from anti-inflammatories, I saw my rheumatologist. I complained that my foot was swollen and painful to walk on. After x-rays, I was prescribed a surgical boot to take pressure off the ball of my foot and steroids.

After two months walking in the boot, I received a cortisone injection in my foot. Most painful injection I’ve ever had! Cortisone injections are painful but it’s the quickest and safest way to decrease inflammation.
Additionally, walking in the boot threw off my balance which caused hip and back pain in addition to the continuous foot pain. So, my rheumatologist treated me with more oral steroids, a muscle relaxer and pain relievers.

Seventeen months later, my foot pain continues to remain unresolved in spite of two cortisone injections, oral steroids and anti-inflammatories. My hip has been ailing me intermittently for fifteen months however for the past 2 months the pain is worse. I’ve been having difficulty getting up the 12 stairs in my home. So I literally crawl up the stairs. Getting up the stairs is painful but there isn’t any problem going down the stairs. Curious huh?

As of today, I’ve had 3 injections for my hip bursitis and two injections to my foot in addition to oral steroids, muscle relaxers and pain relievers. Since that didn’t help, I was sent to physical therapy. The therapist quickly got to the bottom of the problem with a simple exam. It turns out that my IT band has scar tissue and my trocantar muscle is weak. I just about hit the ceiling when she palpated the areas.

Physical therapy continues and so does the pain as I try to build muscle through exercising those muscles. The therapist taught me it’s important to keep my body in alignment. I hadn’t realized how much I had slacked due to fatigue. I’ve learned to balance activities with rest periods. It’s nothing new but I’m more diligent these days. Learning to protect my joints is very important too. Instead of bending at the waist, I’ve learned to bend at the knees. Aldo, I go to sleep with a pillow between my knees which takes the pressure off my hips and back. When I’m reading, I’ve learned to get up every 15 minutes and move around. And now I have exercises to strengthen my hip and thigh muscles to perform twice a day. Icy Hot and the heating pad are my new best friends.

The Lupus Foundation of America states 10% of people with Lupus experience muscle pain and /or weakness during a flare which is a direct attack by the immune system. Symptoms include aching muscles (myalgia), weakness and pain. Inflammation of the muscle is called myositis. Tendonitis is also common. Tendons connect muscles to the bones. It’s the same treatment for every ailment, Nsaids, steroids, and plaquenil.

As a result of the steroids and immobility, I’ve gained 10 pounds over the last six months. Exercise, says the doctor. I try to explain that it’s difficult to get moving when I’m fatigued and in pain. Mobility is definitely an issue for lupies.

Soooo… nothing is ever easy when you have lupus. I’m still fighting, taking one step at a time.

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.

 

 

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❄️🎄