We Need Each Other


6fe4d7ea81e49ffa43b52faf05b2c784

lustfulwhispers.tumblr.com


 

There are so many chronic illness warriors out there who I look up to. So many of you have written many brilliant books and blogs that reveal your strength and mercy. There are times when I’m at the end of my pain threshold, and those words have the power to infuse my spirit with a new radiance and buoyancy.

This is a gentle reminder that we (chronic warriors) need to continue to promote unconditional support. We need encouragement from one another so we can push through the pain a little further than the day before.

We are not here to compete with one another in the chronic community. It does not matter who has more illnesses, who has the most books published or who has the most followers on twitter. Your ego is not your amigo.

Living with illness means we deal with endless limitations and a vast amount of rejection daily. It’s an ongoing battle between our bodies, doctors, insurance companies and often times our sanity. We are judged for not looking sick and looking too healthy. Over time we learn to internalize our pain because we are unable to find help or understanding from others. This is not a place to shut people out.

We are not here to prove who is the sickest or who is the most competent. We share the same wisdom and understanding that comes from adversity. We must be accepting of one another and gently look after one another through our shared moments of pain, uncertainty and struggle. Someone might be at the end of their rope and are searching for the slightest glimmer of hope.

wpid-img_-7bmzz0.jpg


The Spoon Theory written by and spoken by Christine Miserandino

If you haven’t heard of “The Spoon Theory” written by Christine Miserandino yet, please click the link above and read how she explains what it’s like to live with sickness or disability. Thank you Christine for coming up with such a brilliant analogy that we can use to explain to others what day to day life can be like for people with chronic illness.

https://w.atcontent.com/-/6EgHmBNdmN3/mallorie.rheumforlove/7yucfVt4IYM.text/Panel/Autocheck

What Pain Teaches You

I’m not talking about a few aches and pains. The kind of pain I am accustomed to is indescribable and unimaginable that a person can bear with on a daily basis. There’s no way I can make anyone understand this kind of pain unless you personally experience it yourself. Rather than trying to come up with one hundred different words to describe pain, in this post I’m going to share that in order to survive through this pain, you must believe that pain is here for something good. That the pain is here to guide you and help someone else who might be struggling and feeling lost and alone.
wpid-img_-b2gi1t.jpg


Pain has taught me that there is darkness and I need to let the darkness in. Don’t fear it or avoid it. The darkness is there to guide you to the beauty that will follow. 

When your body is sick, your mind and spirit aren’t well either. There will be depression, anger, grief and a whole heaping pile of emotions that comes along with illness. Don’t beat yourself up, your body is doing the best it can trying to fight off extraordinary pain. Be gentle and kind to your body. This isn’t the life you wanted but it’s the life you’ve got. Turn the negative energy (anger, sadness and/or grief) around into something positive and useful. If you’re unable to work, volunteer, take a class or discover a new talent. Explore new things and do what you LOVE to do. Bake cookies for your neighbor or do something kind for someone you love. Spread the goodness that comes from your heart.


It’s easy to get wrapped up in pain and sickness where it’s all you can focus on. Don’t get stuck in this vicious cycle. Don’t ignore your body, but try to get your mind off of pain when you can. If you’re unable to get out of bed one day, make sure you’re aware of your thinking pattern. If your thoughts become negative, let the negative thoughts in, but then practice turning these thoughts around into something positive. If the pain is full force or your too tired (physically or mentally) try listening to soothing music, watching a good t.v. show, read a good book, pray/meditate, or make a list of small and/or big goals you can accomplish for when you’re feeling better. Remember to be realistic with your goals and that it’s okay if you need to ask for help.
Learn to listen to your body’s needs and when it whispers to you that it’s had enough. Rest when you need to and keep moving when you’re able to.

You won’t be in control (of your pain and fatigue) sometimes and that’s okay. I believed that a part of fighting this illness was that I must be in control of all situations at all times, but it only causes more anger and frustration.You’ll be happier and more relaxed when you learn to let go and go with the flow. Acknowledge the pain and/or fatigue and care for your body. Take a warm or cool shower, try gentle stretching, ice packs/heating pads, get a massage,  and have lots of comfy pillows/fuzzy things.You will be questioned, judged and ridiculed about your illness. Don’t let other people’s opinions get you down. Believe in yourself even if no one seems to believe in you. Once you start believing in yourself and being true to yourself, others will come around. Or they might not, but that’s okay too because it will guide you to the people you need in your life.


Speak up and be vulnerable. Stand up for yourself and what you believe in. It takes courage and practice but it is necessary.
Don’t be afraid to go against the tide and think outside of the box.

You are never alone. Don’t isolate yourself or give up on yourself or others. Reach out if the pain becomes too much for you to carry by yourself. There are others out there that are willing to help you even if they don’t fully understand.
You may want to give up and you might give up for a little while. But ALWAYS get back up even it’s painful and difficult. Embrace the pain, your struggle just means your story needs to be heard.“Believe, when you are most unhappy, that there’s something for you to do in the world. So long as you can sweeten another’s pain, life is not vain.” -Helen Keller 

746b5-11325128_694868603950745_1786665228_n

Laughter is truly the best medicine. Find something to laugh about everyday or try to make someone else laugh. “Always laugh when you can. It is cheap medicine.” -Lord Byron

https://w.atcontent.com/-/5Hhpyn056Zt/mallorie.rheumforlove/2sfXg0TvRNi.text/Panel/Autocheck

Removing The Mask

“Pain is always new to the sufferer, but loses its originality for those around him. ” “Everyone will get used to it except me.”  -Alphonse Daudet 


I want to be understood in a way I can never be understood. That’s a  reality I have to learn to accept with invisible pain. I try to explain until my face turns blue, but my words are often forgotten.
Speaking out lout about pain doesn’t come easy for me. It’s awkward for everyone, and no one knows how to respond. The normal response is pity, and pity is uncomfortable.

Last week it was my boyfriend’s 30th birthday, and I wanted to bake him a cake. We were also invited over to his brother’s house for dinner. These are all things you normally wouldn’t stress about, and people who don’t live with chronic pain don’t have to usually think twice about.
All day I was cautious of everything I did, so I wouldn’t use up all of my energy (spoons) so I wouldn’t  be stuck in bed. I did not want to jeopardize making my boyfriend his birthday cake and joining his family for dinner that evening. It’s important that I let go and show the real me. I want to be a part of his family more than anything. 

The time came where we were getting ready to leave for his family’s house and I crashed. I ignored the pain for as long as I could until I was tired. I lay in bed until the pain was not as severe, and I could get up and walk with a shuffle.

I was able to make him his birthday cake, and we ended up making it to his family’s house for a nice dinner. Nothing comes without a consequence with illness. I had a difficult time concentrating and talking, and I wondered if anyone noticed. If they did noticed anything at all, it was probably my awkwardness, clumsiness and the periods of time where I became silent. At one point, I was sitting on the bench they have at the dinner table, and I decided to prop my leg up because my right ankle and hip were sharp and throbbing. I was talking with my boyfriend’s sister-in-law, and I moved in some way that my knee shot out of the socket. My whole body froze, and my heart started to pound. I could feel my face starting to turn red and my eyes starting to tear. I quietly shifted my knee and it made a loud crack back into my knee socket. All while going unnoticed and still carrying on a conversation. 

I become extremely nervous around others while in pain. I know they can feel the nervousness too. This type of pain is hard to fake, and I have a more difficult time trying to ‘act’ healthy. Trying to cover it up makes me nervous because all I can think about is my joints being stabbed and pulled apart.

Then there’s sensory overload. When you’re experiencing a lot of pain, it’s difficult to socialize because pain makes it almost impossible to think. “The more people in the room the greater the stimulus on your nervous system, and consequently your pain.”
I’m becoming less social these days than I’d like to. It’s difficult to engage with people while hurting all over (it’s all you can think about) and I will then become quiet and end up leaving the room. It’s not that I don’t want to be around anyone because I don’t like their company, but that I’m physically more comfortable in a room that’s quiet.

I have a strong hold on acting healthy and pain-free, it’s a coping method and a way to avoid pity. Acting pain-free one moment, and then not being able sit up right the next, is confusing to others and causes judgment. I don’t always have the words to describe the pain I’m feeling. The severity of the pain ranges from tolerable, and able to carry out some activities, to intolerable where I can’t speak.


It’s not fun to surrender to pain, and when I have to, I like to do so in private, because it usually involves sadness, anger, and sometimes tears. It also involves telling myself that the pain does not define who I am, and I need to be kind and not hard on myself. 

Even the strongest are weakened by pain and tests the strongest souls.  It’s a constant pull and pain changes people. The loss of abilities that once defined who you were, are powerful and sad. I have to try to regain strength everyday to overcome endless limitations, lack of living, and loss to not let it take over. 



wpid-ae506bd0f6f0cf0e27aa0cb5fe6dfea5.jpg

Man Ray. The Veil. 1930

 

 

wpid-fa6fcd60bdf847839a10ea675191895e.jpg

https://w.atcontent.com/-/77SJQI6YlLK/mallorie.rheumforlove/0Oj4_NM0j2a.text/Panel/Autocheck

Old, New Or Same?

A few weeks ago, I was looking over my initial diagnosis records from Mayo Clinic back in 1996, and I noticed my SLE (systemic lupus erythematosus) showed that it was positive. 

I had lupus this whole time? I contemplated for a few days whether I had a misdiagnosis. I also questioned whether I was in good hands and receiving quality care with my doctors over the years.  

A week later, I had a follow-up appointment with my rheumatologist, and I showed him these records. He ran various blood tests to confirm that I have a positive SLE along with a positive rheumatoid factor. I have more symptoms of joint erosion with rheumatoid arthritis, however, it is now certain that I have two autoimmune diseases; juvenile rheumatoid arthritis and SLE (lupus). There’s no way for doctors to tell which disease is more active and causing symptoms. 

Lupus is a chronic autoimmune disease that causes inflammation throughout the body. It can affect the skin, joints, kidneys, lungs, nervous system, heart and brain. Lupus flares from mild to severe throughout the course of the disease and patients have times when the disease is more active and times where the disease is more quiet. When its active, other immune cells are starting to attack your own body (in a similar way rheumatoid arthritis will attack the lining of your joints) and causing widespread inflammation. When inflammation is present in lupus, it causes abnormal blood vessels, and the antibodies then end up in cells that attack the organs. 

According to an article I read on rheumatoidarthritis.net; Although the prospects of long-term survival for individuals with SLE is better today than it has ever been, largely due to treatment breakthroughs, the likelihood that the disease will prove fatal is still high. Someone who is diagnosed with SLE at an early age (around 20 years) still faces a 1 in 6 chance of death by the age of 35.”

That was a little daunting to read, but the good news is I’m beating the statistics. 
 
I’m confused if I have RA with overlapping SLE, or SLE with overlapping RA. I don’t know which disease came first, if I had the correct diagnosis, or if doctors are certain what the true diagnosis is. If no one is able to accurately diagnose an autoimmune disease, then aren’t all autoimmune diseases essentially the same?
 
Treatment for both RA and SLE are similar by using medication to slow down the activation of T-cells and B-cells, and by reducing inflammation present in the blood. In addition, my doctor added Plaquenil which is a drug used to treat malaria. It belongs to a class of medications know as disease modifying antirheumatic drugs (DMARDs) to treat autoimmune diseases like lupus and rheumatoid arthritis. 
 
Some good news…
 
My rheumatologist also tested my C-reactive protein (protein found in liver to detect inflammation) and it was remarkably low (0.03). Standard range is below 0.3 mg/dL. This is much better than the results back in November, when my C-reactive protein was 2.40. These results suggest that my Actemra injection is working and reducing inflammation. I have been on Actemra for just about one year, and it does seem to be helping, although, I’m still experiencing agonizing pain and fatigue daily.  
 
My inflammation has never been this low (that I have on record anyway). I will go back for another follow-up appointment in April to see if the inflammation is still under control. 
 
My doctor and I discussed starting Rituxan, which is a cancer medication that interferes with the growth and spread of cancer cells in the body. I heard good things about this treatment and I’m wondering if it would help more with pain and joint damage. In addition, you only have to get the infusion once every 6 months, versus the injection I take once a week. 
 







Continue reading

What Doesn’t Kill You…

 

...Cripples You.
Without warning and with great force, RA knocks you down and am forced to surrender the torment and heartache of illness. It’s a grueling reminder that I need to be stronger than this entity.
I need a reset button.


Below is an uninhibited list of what it’s like living day-today with chronic pain and illness.
*Dealing with extreme sharp pain on a day-to-day basis. Similar to having several broken bones, but no casts or visible proof of the disease.
*Not feeling in control over the disease and it’s progression.
*Not knowing how I’m going to feel tomorrow, in an hour or 10 minutes.
*Nausea and heartburn.
*Fevers.
*Body aches and chills.
*Migraines.
*Muscle twitching/spasms.
*Cold sensitivity.
*Numbness in fingers and toes. Extremities turning purple.
*Chest pain and heart palpitations.
*Anxiety.
*Soar throat and voice hoarseness.
*Overwhelming fatigue and being in a daze all day.
*Memory loss and lack of concentration.
*Joint deformities and cartilage loss.
*Dry eyes and mouth.
*Hair loss.
*Cracking in my neck.
*Nightmares.
*Grinding my teeth because of pain.
*TMJ and jaw pain.
*The “I can’t-s”.
*The “I can’t, but I will” turning into “I shouldn’t have because I’m really paying for this”.
*Fear of early death.
*Being overwhelmed with medical procedures, tests and information.
*Being misunderstood.
*Trying to communicate with others and often times being
dismissed.
*Hiding pain. The only thing I’m trying to fake is being well. 
*Feeling defeated and exhausted.
*Feeling let down by my body.
*Feeling let down by medical professionals.
*Feelings of guilt and helplessness.
*Insensitive, ignorant, arrogant comments.
*Judgement.
*Harsh side effects from medications.
*Insomnia or “painsomnia”.
*Having to cancel plans and letting people down often.
*Depression.
*People thinking this disease is in my head or is my fault.
*Ignorance. This is on here twice.
*People saying how strong I am and then not taking me seriously or belittling me for whatever reason.
*People assuming I’m cured because I’m laughing or smiling.
*People thinking I’m cured because I’m out running an errand or trying to be social.
**Medical advice from people who haven’t been to medical school.

 
 

 
 
Hope, even just the slightest sparkle of light, is what keeps me going. 
 



 

https://w.atcontent.com/-/4z-jZ2OBumV/mallorie.rheumforlove/3v-3x2F_dpl.text/Panel/Autocheck

With Love On My Side

 
This is not a negative post. I had a tiny breakdown today, it happens every now and again. Living with Rheumatoid Arthritis is a roller coaster ride. Ignore the commercials you see for Biologic medications and treating RA. Pharmaceutical companies want a more upbeat approach in regards to RA and want you to believe the disease is just a nuisance. Their treatments have been referred to as “pain relievers”. This doesn’t help to promote awareness for a more concrete understanding of RA and it doesn’t help to establish proper medical care for patients that are often presumed to be weak or malingering. The word ‘arthritis’ in RA throws everyone off and doctors and patients have called it an “identity crisis” for RA.  For the real people with rheumatoid disease (PRD), only 6% experience remission and a majority experience limited or no response (about one-third are non-responders and nearly 30% have only 20% improvement).  RA doesn’t start in the joints, it really starts in the blood. RA is actually a systemic inflammatory disease that attacks primarily, but not solely, the joints. It is an incurable disease that is similar to Type 1 diabetes in that the disease can damage many different bodily systems. PRD are twice as likely to experience unrecognized heart attacks and sudden cardiac death that is unrelated to traditional heart disease risk factors. Poorly functioning PRD have a survival rate comparable to stage IV Hodgkin’s disease and three-vessel coronary artery disease. 


Those are the facts, I’m not trying to be a downer. It’s real and it can be frightening and I’m tired of fighting the pain and most of all I don’t want to fight this dragon alone anymore. No one gets it. I’m exhausted of having to explain RA (RD) daily and people brushing it off. I’m exhausted with playing doctor. Often times my doctor dismisses new occurring symptoms and joints (among other things) are being neglected. PRD need and deserve quality comprehensive care along with preventative care.


My thyroid is going crazy and the term my doctor gave me is “thyroid storm” and it happens when your thyroid suddenly releases large amounts of thyroid hormones in a short period of time and is potentially life-threatening. My immune system is now attacking my thyroid as well as my joints. Almost everyday last week I was getting radio-active iodine scans and ultrasounds to see if one of the nodules was malignant. I got the good news Monday that it was benign. I spent the last two weeks thinking of the possibility of having thyroid cancer. I was scared and I still am a little scared of what other complications of RA will come up and what will my immune system will attack next, but I try to not think of those things often. My doctor put me on beta-blockers for my heart and thyroid medication to stop the thyrotoxicosis, and the thyroid nodule has the possibility of becoming malignant in the future so surgery is recommended. 

 My c-reactive protein (inflammation) is elevated (standard range is 0.00-0.30 and mine is 1.80). I’m concerned that the inflammation is not only occurring in my joints. I’m not responding to my current RD treatment and my doctor gave me a list of medications to choose from. I have to play doctor (with no medical degree) and try to decide from the information that I have researched to medicate myself. One particular medication has a risk of brain infection and others heart failure. How do I choose when they all seem to have the same amount of success rates? Do I toss a coin? Trial and error seems like my only option. I wish there were more ways my doctor would measure disease activity to determine the course of my treatment. Why isn’t he taking it seriously and treating this aggressively? More questions for my next appointment. 


 I stay positive everyday by smiling through the tears. I get out of bed every morning despite the sharp, razor blade-like pain. My bathroom is only a few feet away, but most days it takes me several minutes to get there (and almost falling on my face) because it feels like there are ice picks jabbing me in my hips and ankles. The voice in my head always tells me “it can always be worse” and so, thank goodness I have a strong bladder!

I also stay positive by finding humor in RD pain.

I’ve always been too proud to ask for help, but the truth is I need help more and more these days. The disease is progressing and I don’t want to fight alone anymore. Fighting a war is much easier with a companion on your side. 


In the meantime I want to thank my friends and family for being patient with me and listening even though you might not understand. Your love and support helps keep me strong and resilient.


Hugs. 

 
Post blog: Enduring the physical and emotional pain of RA (RD) alone can be daunting. I’m happy to report that after this blog post, my warmhearted aunt Cindy took off of work and joined me at my next appointment with my Rheumatologist. I’m very grateful she was by my side and took notes for me. Her calming presence and positive vibes made all the difference. 

I’m also grateful for my good friend David. He listens and doesn’t change topics when I’m discussing RD and most importantly he doesn’t judge. He is genuinely curious and asks questions about what’s going on with me and is kind and offers to help. He keeps me company on days I can’t go out of the house and keeps me smiling and laughing. What more can you ask for in a friendship? 

My good friend Eric knows the good, bad and ugly of RD and has seen the tears. Even though he lives in Boston he always makes sure to call often and see how things are going. I don’t always feel like talking on the phone, but he’s very understanding and patient. He makes me laugh and always looks at the bright side of things. He is able to perceive my hardships because he has also endured heartache and suffering. 

Last, but definitely not least, I’m grateful that I have my mother’s support. I don’t fake my pain around her and she is the only one that knows me inside and out. I don’t ever have to explain anything to her, she can tell how I’m feeling just by the sound of my voice or a twitch in my face and  is always immediately by my side to comfort me or massage the pain away. Her love overflows in abundance and eases my worries and fears. She puts me on my feet again. 
 
 
I feel the love and it feels good.
 


https://w.atcontent.com/-/1T2fVYSEQPO/mallorie.rheumforlove/029QawOaCZW.text/Panel/Autocheck