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❄️🎄

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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.”

 

Learning how to be me when I’m not the person I used to be

IMG_5524Everyone evolves over the course of a lifetime. We grow from infancy to adulthood. Life experiences and those who share them with us shape us into who we are. When you go through any trauma, whether it’s the loss of a loved one or a divorce, life changes. However, there’s another level of change when diagnosed with a chronic illness. It’s not just a bump in the road. It’s not going to go away. There’s a wretchedness to deal with. There’s a new reality to accept for not only you but your loved ones too. There’s also grief for the loss of the person you once were, not only for you but your family and friends too.
I’m different than other family and friends. I have limitations and that makes our relationships different than others. I thought I had accepted that fact but every now and then people get upset when I can’t do the things I used to do or become resentful modifying their behavior to accept my limitations. That’s when it all comes rushing back like a tidal wave. That reminder of what once was. It’s overwhelming, drowning! After all, the people around you have needs, people want what they want. Sometimes you just can’t be what or who they need no matter how much you want to. Even when you share how you’re feeling it doesn’t mean they understand. Learning as I go along, I’m not an expert. I don’t expect my family and friends to become experts on my condition. No one understands unless they have walked in your shoes. Even when I’ve tried to educate them about my condition, they may not understand. What they will understand at some point is… I’m not the person I once was!
I’m not the same person that can work all day n go out with friends at night. I’m not the same person that can go from one activity to another and another. I’m not the same person that can prepare a holiday meal in one day. I can’t even get all my grocery shopping done in one day. I’m not the same person who can shop all day and socialize all night. Now, everything takes planning with short activities. Patience wanes and friendships suffer. It’s time to read the writing on the wall, Life will not resume to what it was. I’m always tired. I always have joint pain. I have major fluctuations in my heart rate and blood pressure. Sometimes I’m more crabby than usual. Sometimes too overwhelmed to talk. Sometimes I can barely get out of bed. Sometimes life is just ugly.
Other times, I can slap a smile on my face and push through to please family n friends. It’s hard to look on the bright side when you have pain or feeling debilitated. It’s frustrating. And yes I know it’s frustrating to those around me too. I’m unreliable these days. I never know how I’m going to feel or how long I will last when I am ‘having a good day’. Somedays I have nothing left to give. Those are the worst days because I’m a social person, a caring person who enjoys being helpful. It’s difficult not being me! It’s my head saying go go go and my body saying no no no! Most days I feel stuck and overwhelmed. Other days I accept my limitations and do what I can. I force myself to stay connected.
Wishful thoughts don’t make it so, that is the reality of the situation. It feels like a loss no matter how you spin it. This applies to anyone with a chronic illness. I know there are millions of people that have lupus. I know there are millions of other people suffering from other chronic conditions that feel the same. Anything chronic is a challenge whether it’s Vertigo or Chron’s or something traumatic. I know everyone has their share of struggles in life, but some days I can only focus on me. That’s when I feel bad for being selfish.
Feeling overwhelmed and in pain doesn’t allow me to see beyond myself. That’s when I tend to focus on my own problems and get distracted from everything going on around me. Lupus is a life long illness with prognosis unknown and a multitude of complications. I had no idea how much my life would change when I was diagnosed 20 years ago. The traveling circus of inflammation has ruined my life, the life I had planned. BUT.. life goes on. A new life, different but a life nonetheless. It’s a struggle to stay positive even though I make it a habit to find the good in things.
Don’t get caught up in a vicious cycle of self doubt.
Find a few things to be grateful for every day.
Watch for Depression.
Get help. There’s no shame in reaching out for professional help.
Don’t shut down.
Don’t give in to the pain and grief.
Don’t give up!
Be a survivor not a victim.
Live your life to the best of your ability.
You are strong. You’re a survivor!

Choose Wisely

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Once again my Lupus is out of control. Here I go again on a roller coaster ride with the traveling circus of inflammation. It’s been a tough year so far. Even though I followed my dr’s recommendations to the letter of the law I’m in a downward spiral.
With a foggy mind, dizziness, generalized muscle aches, left shoulder pain, bilateral hip pain, left knee and foot pain with swelling, I’m not a happy camper. It’s difficult to get around the house let alone get anything done besides activities of daily living (ie: dressing/washing up, eating/drinking and toileting). The only option is to find medications that can help control the symptoms. I’ve come to accept the fact that there’s no cure available, however I struggle to accept the treatment options.
The goal is inflammation management in addition to the standard plaquenil (Hydroxychloroquine) which is an anti malarial to prevent flare ups and sun sensitivity. Navigating my options with my doctor is like a hostage negotiation. With every drug option there is a trade off of nasty side effects. Too often I’m trading one set of symptoms for another such as less joint pain and swelling in exchange for upset stomach, diarrhea and irritability but I’m desperate for some relief. It’s always best to opt for the lesser of two evils. The fires of inflammation must be put out so I get a couple of options, corticosteroids or immunosuppressants. I go directly to option 2 since I’m already talking an anti-inflammatory as maintenance for the chronic joint pain and swelling. If my symptoms don’t improve, then option 3 will be put in motion. Also, I’ve included option 4 however, I had horrible side effects that caused stiff neck, severe headaches, nausea, photosensitivity and peripheral vision loss like a chemically induced meningitis that lasted 3 months. That is not an option I’m willing to endure ever again!
So here’s the break down ;
Option 1: Anti-inflammatory drugs
*Aspirin
*Nonsteroidal anti-inflammatory agents (NSAIDS)
-Ibuprofen (Advil, Motrin IB, Addaprin, Ibu, NeoProfen)
-Naproxen (Anaprox, Naprelan, Naprosyn)
-Diclofenac (Voltaren XR, Cataflam)
-indomethacin (Indocin)
-nabumetone (Relafen)
-celecoxib (Celebrex)

Option 2: Corticosteroids
-Methlyprednisolone
-Prednisone
-Prednisolone

Option 3:
*DMARDS, Immunosuppressives /Immunomodulators
-Cyclophosphamide (Cytoxan)
-Methotrexate (Trexall, Rheumatrex)
-Azathioprine (Imuran, Azasan)
-Mycophenolate (CellCept, Myfortic)

Option 4:
*Monoclonal antibodies (mAbs)
Benlysta

With the negotiations settled, I limp away with a prescription for prednisone. I brace myself for the bleak road ahead and warn my family and friends of the storm to come. The joint pain and swelling are bad enough to endure the storm of side effects. Just a few side effects of Prednisone that I’ve experienced in the past:
insomnia
nausea
increased appetite
weight gain
muscle cramps
muscle weakness
mood swings/
emotional instability
depression
headache
angioedema
bradycardia/tachycardia
acne
dry scalp
facial and pedal edema
impaired wound healing
increased sweating
petechiae rash
thinning scalp hair, urticaria
hirsutism
menstrual irregularities
moon face
hypertension
sodium retention
abdominal distention
peptic ulcer

I’ve been treated with every single medication listed above. A couple medications caused debilitating side effects for an already debilitating condition. There’s no win-win to this situation. It’s more like a cut your loses and run.
I guess the moral of the story is to know your options and choose wisely.

Gratitude

IMG_5118This month I’ve needed some extra inspiration since I’m struggling with getting a proper nights sleep (something that’s not uncommon with Lupus sufferers). I sleep for a couple hours at a time but wake and stay awake in the middle of the night. Since my sleep is interrupted by either pain or palpitations, even if I get 8 hours total (11-2a and 5-9a) I don’t feel rested. With that said, I get up every morning with joint pain, stiffness and fatigue due to my Lupus. Most of the pain and stiffness go away with 30 minutes to an hour after moving slowly. However there’s always some degree of fatigue throughout my day especially if I haven’t had a restful night and that can be debilitating. Now that’s a major lupus downfall, so in addition to taking melatonin and trying to exercise daily, I’ve started writing a gratitude journal.
In my search for inspiration, I came across an older book – Simple Abundance by Sarah Ban Breathnauch. It is a day by day journal type book that helps focus on the positive. It reminds us to be thankful for those little things we take for granted. Personally, I’m grateful for fresh strawberries and air conditioning at the moment! I choose joy, to be happy. Don’t get me wrong, I have good days and bad day. No matter what is going on in my day, I take a few moments to concentrate on simple things like the sunshine or a beautiful sunset. Often I take my journal out to the forest preserve, nature always helps me focus and somehow calms my senses. I don’t know if it’s the coolness of the trees or sounds of birds chirping that settles my soul but for one reason or another it works every time. When I meditate or pray, I enjoy the early mornings or late afternoons the most.
For the average Lupus sufferer, life can be difficult for many different reasons. It’s important to focus on gratitude as a part of everyday life whether it’s being thankful for someone or something especially in relationships. The word gratitude is derived from the Latin word gratia, which means grace, graciousness, or gratefulness. So just remember, positive vibes might have started with the hippies but you can do it too!
1)Focus on the simple things.
2) Keep a daily journal of three things you are thankful for. This is recommended first thing in the morning, or before you go to bed.
3) Take a few moments to tell a spouse, partner or friend something you appreciate about them every day.
Gratitude feels good, it’s good for you and for the people around you, too! Now can you see the benefits of gratitude? It’s contagious, yet positive and not like the flu!

My new outlook is from a quote I came across by philosopher Epictetus, “He is a man of sense who does not grieve for what he has not, but rejoices in what he has.”