Spoonie Story: Lois Woken

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My name is Lois Woken. I have been a spoonie all my life, however I didn’t know I was until about two and a half years ago. It seemed like growing up I was always sick. I got told I was faking it a lot. I wasn’t supposed to feel lethargic at my age,must be because I was lazy! At least that’s what my step father would tell me. I also was told I was faking how bad my joints hurt, however no one was laying with my while I cried myself to sleep every single night I was in pain. I learned to believe those lies. I told myself I hurt because I was fat, or not exercising enough, not eating healthy enough. I also told myself it only hurt when I exercised because I was so out of shape. I figured the sharp pains in my back and feet were normal after after 8 hours on your feet.
After the birth of my second son at 21 my body really changed. The bouts of fatigue were intense but short lived, and always accompanied by a slight fever and body aches. (some of the lovely symptoms of RA.) I thought I was getting frequent colds so I started taking tons of immune boosting vitamins and herbs, but it never helped, in fact I felt worse. (I now know that’s because I have rheumatoid disease, so I have an immune system that doesn’t work right, so by increasing my immune system I was only increasing my symptoms, by boosting an improper immune system.)


I pushed myself more and more, tried different diets, different exercises. Any thing I could think of to keep going. Then one day my body had enough. I went in to work one night ( I was an ER nurse at the time) and the pain in my abdomen was so severe I became sweaty and couldn’t draw in a full breath. They put me in a bed and began a work up, and that’s when I officially became a spoonie. I was diagnosed with gastroparesis and autoimmune hepatitis at the time. A year after that I was diagnosed with fibromyalgia and my doctor, at the time, was on the hunt for something autoimmune. Finally four months ago I was given the diagnosis of rheumatoid arthritis. I prefer to call it rheumatoid disease since it is not arthritis but an autoimmune disease. I also have Reynauds, migraines, asthma, RLS.


Becoming a spoonie was not an easy transition. I went from high paced, fast working, always going, active ER nurse to stuck in bed ill person almost over night. My husband suffers from PTSD which was quite severe at the time and also had a very hard time adjusting. I was not able to return to work. It took me a year to get disability. In the mean time we were struggling to make ends meet as we had a house payment an RN could afford but a disabled me could not. I had to give my car back to the bank, we tried everything to save our home but lost it as well. In fact we had to sell 75 percent of our belongings in order to be able to move. It was devastating. I was fairly ill at the time (this was 2 years ago). I had a PICC line with 24 hour fluids running and could only eat liquids. I weighed about 105 pounds. The stress of the move made things even worse. We moved from Texas to Las Vegas and put our belongings in storage. But due to just losing our house, belongings and owing in medical bills and everything else, we didn’t have enough money to cover our bad credit to get an apartment. So we left our stuff in storage and went to live with family in Washington until we could get on our feet.


During that time I was incredibly ill. All I wanted to do was die. My husband and I were struggling to get along because we were both grieving over our total loss and had no clue what to do. Thankfully I had my father during this time. He never gave up on trying to help us get through it, help us to see there was a light at the end of the tunnel. He honestly helped me to see that this was not worth life being over with. He helped me see I have a choice in how I feel. I was feeling like a complete loser. I lost everything and had to live in a studio hotel room. He helped me see how wrong I was in my self talk! I didn’t ask to become disabled. I didn’t ask for a body that hurts and wants to die. I certainly didn’t work my butt off for years to earn my RN and now be unable to use it. Becoming disabled does not make me a loser. It makes me a person who suffered through some terrible circumstances. I am a person who is strong enough to survive total loss and still find happiness in this world. I am still worth something. So with my fathers help and a husband willing to fight with me, I made some major changes to my self talk.


Here I am a year and half later. We live in a beautiful apartment in Las Vegas, doing many things we always wanted. Like art for instance. I have been able to access the best doctors I have ever had. We are finally able to pay off bills and will be out of debt in a year. I became very active in Spoonies for life and now have become an administrator, able to help others once again. I also get to be part of the Spoonie space talk show, another way to reach out and help others. I have found I cope better when I am able to help others. It fulfills the part of me that loves being a nurse and helps me feel a little more normal. I hope everyone who feels like giving up has someone in their life to help them see that there is always a light at the end of the tunnel as long as you keep going. Spoonies for Life has been an amazing game changer for me. I finally found people who could understand my pain. People who could help me make sense of the craziness my life had become.


My body still hurts and I still get flares but they are not as bad as they were. Changing how I think about my chronic illness has helped me achieve a better quality of life. I search for things every day to make me smile, things that remind me of the beauty in this world and in this life. My wish for everyone suffering a chronic illness is that they can find the beauty in their lives, whatever that may be.

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Lois is an admin of the Facebook Spoonies for Life Support Group, as well as a panelist on the Youtube webshow Spoonie Space.


Changing Lifestyles with Chronic Pain

Kathy Marie

By Kathy Marie

Kathy Marie

If you would have told me 8 years ago that my life would take a drastic turn and if I were to look ahead I would see me in the state I am now, I would have told you that there’s no way I would allow this kind of struggle to go on day in, day out until it became as natural as breathing. I would have told you that I would never be able to survive the level of pain, confinement, fear and change that being chronically ill brought with it. Basically, I would have said that I couldn’t handle living in that way; the struggle would be too great. Too difficult. Too costly.

Eight years ago, I was a full-time member of the working class, I was active and fit, I was a “get out there and live” kind of woman. On any given weekday you could find me loving my job (I was a legal assistant for a local real estate attorney) and juggling household chores with the dexterity of a gifted circus act. I lived in a split level home so I was always scooting up and down the stairs with ease- sometimes skipping steps in my race to get to where I was going.

On any given weekend, you could find me out on nature, didn’t matter the climate- hiking, jogging, walking trails, sledding, snowshoeing, tennis, biking… you name it, I did it all- and never even had one thought of  “What would my life be like if I couldn’t do these things?” And probably the reason I never thought that was because there was no reason to- I was healthy. Cinderella sang it best (now I’m showing my age, lol) and it’s very true- you don’t know what ya got, til’ it’s gone.

A lot has changed in eight years. And I’m still trying to cope with how drastically it has.

On any given weekday these days- you can find me in bed. Propped up with pillows, stinking of menthol, meds within easy reach, surrounded by books, coloring pencils and adult coloring pages, my journal and the laptop I’m currently typing on. I am most often in pajamas or lounging/yoga pants. Not because I’m too lazy to change- I often change a few times a day- but because it’s the only clothing that doesn’t hurt my sensitive skin. My typical morning begins with slow and painful steps to the bathroom, which is less than 10 feet away. Every single muscle and joint hurting and sore and aching. Always.

The rest of the day is spent by measuring time against what I’m capable of doing. For example- a typical dish-washing episode can be an all day process because I have to stop frequently to get off my feet. The pressure on my back and hips makes it impossible to stand for longer than just a few minutes before I need to grab a seat and ease the pain. If I have more than just a few dishes… well let’s just say I am perpetually washing dishes.

If I have dusting, vacumming or any other chore on the list, it gets broken up by frequent breaks. I actually have to plan to clean my bathroom, because it takes everything in me and I know that once I start, I have to keep at it until it’s done. Kneeling and stretching to scrub a tub is akin to being mauled by an angry bear.

And I know that sounds exaggerated, b/c how would I know what that feels like- but when your muscles feel shredded and your body feels like it was repeatedly slammed against a hard surface…you get the drift.

My weekends are nothing like they used to be. Whereas before I would be out and about and experiencing the joy of being active, now I am consistently handing my husband a grocery list and apologizing for not being able to go. We live in a 3rd floor walk up apartment, and those stairs may as well be a mountain. My husband gets all the recognition he deserves for “getting” why I can’t go along with him, but I know it must get annoying to constantly be the one taking care of business.

Some days I am driven to frustrated and helpless tears because of how cut off from the rest of the world I feel. While I know that it is not my fault that I am chronically ill, I often push myself past my coping ability simply because I can’t stand feeling idle. I’m at the stage where I have accepted that I will always be in some type of measurable pain for the rest of life. The acceptance itself was a long and drawn-out battle, and some days, even though I have accepted it- I still shake my fist and rail against the injustice of it all.

Do I feel sorry for myself? Yes. Sometimes. I think anyone who suffers from Chronic Pain has moments where we are self-contained and all we can think about is the unfairness of it all. I also think that is completely normal. Our lives have been thrown into a blender and the resulting mix looks like nothing we’ve ever seen before.

Stuck in bed? What the hell is that?

But lately I’ve been trying hard to look in-between the difficult moments to find the sweet ones- and stop beating myself up for the fact that I am changed. I am not the active and fit suburban soccer Mom I used to be. And that’s okay. I still have the same heart. The same soul. They may be a little worse for the wear but they still function. I can still love. And admire. And respect. And enjoy. And count blessings. I don’t need perfect health to appreciate the good things in life. In fact, had it not been for some of the more difficult aspects of being chronically ill, I don’t know if I ever would have paused to ponder the notion that life can be appreciated in all manner of ways. I’ve learned a lot about myself on this CP journey. I am blessed in so many different ways and I hope I never lose sight of that.

Eight years ago I would have said I couldn’t survive living the kind of life I lead now. Now I see how incredibly blessed I am and I end every day by thanking God for another day to live, to experience, to love, to laugh, to exist. Even in this broken down body- I exist. And I hope I never lose sight of how precious that blessing is.


Kathy Marie is a happily married 43 yr old Mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.

Kathy has been diagnosed with Fibro, RA, Hypothyroidism, Endometriosis, GPD (generalized panic disorder) Chronic Fatigue Syndrome and Depression.

On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.

All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”

Kristina: My Life With Fibromyalgia

fibromyalgia bad day

I have lived with pain in some degree for close to 25 years. As a child, situations became overwhelming because of overstimulation. Noise made me irritable, I would go into another room to find quiet away from too much activity- even at Christmas! In my teens, I had a hard time sitting in one place, such as when we traveled. Sitting in the car for hours made my hips ache terribly. I had strange skin sensitivities and rashes that the doctors said were allergy related, although no allergy medication did more than make me drowsy.

I tried not to complain when I was hurting or tired because of the many times I heard, “It’s just growing pains,” “If you get up and do something, you will feel better,” “You are just trying to get out of doing___,” or “There is nothing wrong with you, it is all in your head.” Because of this, I thought it was just me, and that the amount of pain I had was normal- everyone had it.

I often went months with no problems, and had times where I practically lived outside, walking and riding my bike all over town. Eventually, during one of the worst times, I complained so often about the pain in my hips and knees, my mom took me to a doctor who told me I had arthritis. He said to take ibuprofen when it hurt, which did not help stop the pain at all.

fibromyalgia bad day

Searching For An Answer

In my twenties, I got married and had my son. Surprisingly, in hindsight, I had no pain issues while pregnant, and other than being highly fatigued with occasional swollen ankles, no other pregnancy concerns either. Shortly after having him, I began to have health problems including kidney stones, migraines, knee, back and hip problems, and other random aches and pains. Some mornings the pain in my hands and feet were so bad I could hardly make it through a shower, down the stairs and through breakfast with my son. After seeing a few more doctors, I was told I had Rheumatoid Arthritis. I went to physical and occupational therapy, took medications that did not help me and which had awful side effects, as well as the potential of causing long-term harm to my eyes and liver. I got counseling. I lived in fear that I would be wheelchair ridden, physically disabled before my son was even out of high school.

Through all of this I worked, usually full time. I was a wife and mother. I had my first house and all it entailed. I opened and ran a used bookstore. Many times, I didn’t have the energy to do the household chores, or run errands. My friends would come over to help with my dishes or laundry. They and my family were my saving grace in a tough time. I spent many days flat on my back in terrible pain. I often had my parents or grandparents take my son for the day because I just couldn’t take care of him. I would make plans to do things, and then have panic attacks, because of the pain I knew would come if I became too tired. Sometimes I would be so tired or miserable; I could not follow through with the plans at all. I stopped making plans. Routine shopping made my skin crawl, and gave me headaches- especially at Christmas time- or in a mall.

My ex-husband would tell me I was lazy, or a slob because I couldn’t keep up with the house. He called me a hypochondriac when I would mention aches and pains, or say I felt I needed to see a doctor for something. When I would miss some family function because of pain or fatigue, he would say I was making excuses not to see his family. I spent a lot of time with friends because they were understanding and helpful. The frustration of an unsympathetic marriage became immobilizing. I had severe depression because of all he told me I should be doing, but knew I was unable to do, and the guilt I felt because of it. In part because of my low self-esteem and feelings of failure, I filed for divorce.

Around the same time, I had a work-related accident, which left me with crippling back pain. After months of physical therapy, I found I needed back surgery. I went to a Rheumatologist, afraid I would trigger even worse flares of the Rheumatoid Arthritis, or that it would attack my back. Since the original doctor I had seen had moved out of the area, I saw a new one. He spent about 30 minutes talking to me about my symptoms, the timing of them, frequency, etc.; he spent another 30 doing tests- blood work, physical limitations, and a tender point test. That test just about sent me through the roof! This doctor listened more closely than any other doctor I had ever been to. He did not just make a conclusion based on 5 minutes of knowing me, he was very thorough! He said he did not believe I had RA, but needed to wait for my blood work to come back to see if I did have RA or another rheumatologic disease such as Lupus.

When the results were all in, the doctor had me return for a consultation. He told me that what I had was Fibromyalgia. I was elated! Instead of a progressive degeneration of my body, which would cripple me, I had a Syndrome, one that worked in flares and regressions. I could handle that, right? Just give me the meds and I will be on my way!


fibro warrior purple hoodie
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What Is a Good Day Like?

I have some degree of pain every day. On good days I can get showered, dressed and go to work. I can get through my day without anyone asking if something is wrong, and without losing patience with others. I have re-married. When I get home, I can probably do some errands, and manage to feed my family. I could pay attention to my husband and kids’ needs without being snappish. My pain on days like this is likely limited to achy feet in the morning, and stiff neck and back if I sit too long. At the end of the day, I probably need to sit and read in order to relax tense muscles before bedtime.


A Bad Day?

A bad day is usually preceded by a night with little sleep, aches and night sweats (the kind where you have to get up and change…ick! Night sweats are a symptom, but also a side effect of the medication I take for sleep and chronic pain.) When I wake up, my feet typically feel like the bottoms are bruised, my joints sound like Rice Krispies, and my neck is locked up. I take a shower (hot, because cool water actually feels as though it burns) and try to stretch. I dry my hair in stages because my arms get tired while I do it. I blow dry my face on cool so I can put makeup on, otherwise my skin is too moist, and lets the makeup slip right off (my make up only usually lasts until lunch on these days.) Then I go through my closet trying on outfit after outfit until I find clothes that do not hurt. Some fabrics are painful to wear because my skin often feels sunburned. Others are too tight and feel restricting (especially bras and elastic bands). (Read Katrina’s article: Dressing from head to toe)
When I could go to work, I could usually tune out the worst of my pain. Those that know me best know that I was passionate about my job and can be totally consumed by it. As an in-home behavioral therapist, I was up and down on the floor with children, and driving between clients. Once I was driving, it was all I could do to get to the next home. When I finally got home, I would put on the loosest, baggiest clothes I have, take a painkiller and muscle relaxer and hit the couch. I have recently left my job because of this.
Usually I will read a little, and then take a nap for an hour or so. On the worst days when I am asked what is for dinner, the answer is, “Whatever you can find.” These are the days I am on the couch until it is time to go to bed. These are the days I have everything from migraines or random shooting pain, to crippling muscle cramps and hot flashes. They are the days when hugs hurt and when my husband lightly rubs my back or arm to comfort me, he gets his head bitten off because it is so painful. My temper is short and my words sharp. The weekends following these flares (and they can last days, or weeks) I move from bed to couch, back to bed. The dishes and laundry pile up, the floors get sticky. I feel useless and pathetic. I have been more frustrated and ornery with it this time, but it has also forced me to accept that this is part of who I am, and learn that I have to recognize it will always be with me to some degree. I am still grieving for the things I could do yesterday, which I want to do today. I am acclimating to the push-crash cycle I tend to put myself into.


How I Cope

I try to evaluate every situation; how will this situation affect me tomorrow, or next week, if I skip it? I know I have to live in the moment, and have learned the rules of “play and pay”. I have to weigh chores, trips, and tasks with “is it worth the pain I will pay with if I do it?” I try very hard to look at each day individually. Am I always able to do this? No, I have many days when I have little pity parties. Sometimes that is healthy, as long as they do not last too long!
I have been more frustrated and ornery with it this time, but it has also forced me to accept that this is part of who I am, and learn that I have to recognize it will always be with me to some degree. I am still grieving for the things I could do yesterday, which I want to do today.

What you need to know about Rheumatoid Arthritis

rheumatoid arthritis

Like many autoimmune diseases, the precise causes of rheumatoid arthritis (RA) are still not fully understood, although existing research points to a combination of genetic and environmental factors.

The first traces of rheumatoid arthritis in archaeological records date back to at least 4,500BC, although the disease was extremely rare in Europe prior to the 17th Century.

RA primarily affects the joints – in particular the hands and fingers – and causes swelling in the synovial membrane, and pain which can develop slowly over a period of weeks or months. Inflammation and swelling can also occur around the lungs and heart, and the condition may lead to fever and low energy levels.

There are other autoimmune conditions which may present similar symptoms, such as systemic lupus erythematosus,psoriatic arthritis, and fibromyalgia – and so whilst diagnosis is usually based on a patient’s symptoms, further tests and x-rays may be used to rule out these other possibilities.

Also in common with other autoimmune diseases, rheumatoid arthritis is classified as being incurable. For this reason, treatments are focused on reducing pain and discomfort and improving the patient’s general quality of life.


RA warrior blue hoodie
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Signs and Symptoms

Rheumatoid arthritis is a condition which primarily affects the joints. However, 20-25% of patients may also experience symptoms in other organs.

Swelling and painful inflammation of the joints occurs more often in the morning and last for more than an hour, and can also occur after periods of rest or inactivity. The time and duration of the discomfort can help to differentiate rheumatoid arthritis from other forms such as osteoarthritis.

Typically, the symptoms occur symmetrically (affecting both sides of the body equally) although this is not always the case and symptoms may develop asymmetrically. As the condition advances, the inflammation can lead to damage to both cartilage and bone in the joints, resulting in a loss of mobility and movement, as well as further pain and discomfort. This damage to the cartilage and bone may also result in deformity of the joints, particularly in the fingers.

As well as issues with joints, around 30% of patients experience what is known as the ‘rheumatoid node’. the most common non-joint symptom. It is a kind of inflammatory reaction which occurs in the skin, usually over bony areas such as the elbow, heel and knuckles. Other, less common, skin associated symptoms include pyoderma gangrenosum, Sweet’s syndrome, drug reactions, erythema nodosum, lobe panniculitis, atrophy of finger skin, palmar erythema, diffuse thinning (rice paper skin), and skin fragility.

Fibrosis of the lungs is commonly associated with rheumatoid arthritis. In studies in the USA, approximately 25% of RA patients also developed rheumatoid lung disease.

In addition, rheumatoid arthritis can cause complications in the kidneys (such as renal amyloidosis) and in the heart and blood vessels. In some cases these associated conditions are a result not of the arthritis itself but a reaction to treatment. Anti-inflammatory drugs in particular can have an impact on blood vessels and doctors need to consider this when prescribing treatments.



Current research suggests that genetics account for approximately half of the known causes of rheumatoid arthritis (although as mentioned earlier, the causes are not yet fully understood).

Of the known non-genetic causes, smoking is believed to be the most significant, with rheumatoid arthritis being up to three times more common in smokers.

It has also been observed that a deficiency in Vitamin D is more common among rheumatoid arthritis patients than the general population – although it is unclear whether this deficiency is a cause or result of the disease.

There is no evidence as yet to suggest that rheumatoid arthritis is hereditary.


Treatment and Management

As yet, there is no cure for rheumatoid arthritis, and so treatment is based on managing and alleviating symptoms.

The primary treatment is known as Disease Modifying Anti Rheumatic Drugs (DMARDs). This collection of drugs has been shown to cause remission of rheumatoid arthritis in up to 50% of patients when started early and they are generally found to reduce symptoms, decrease joint damage and reduce pain and discomfort. DMARDs include methotrexate,hydroxychloroquine, sulfasalazine, leflunomide, TNF-alpha inhibitors (certolizumab, infliximab and etanercept), abatacept, and anakinra.

Other anti-inflammatory agents can also be prescribed to rheumatoid arthritis patients, although these must be used with caution in the presence of other conditions such as gastrointestinal, cardiovascular or kidney problems.

In the early stages of rheumatoid arthritis surgery can be an option, removing the inflamed synovia. In later stages, joint replacement surgery may become necessary.

In addition to medical treatment, lifestyle measures such as taking regular gentle exercise and receiving occupational therapy have been demonstrated to reduce the symptoms and advancement of rheumatoid arthritis. There is as yet no evidence that dietary measures have an impact although research is continuing in this area.


Facts and Figures

● Named in 1859 by English rheumatologist Dr Alfred Baring Garrod
● Affects between 0.5 – 1% of adults in the developed world
● Approximately 25 new cases per 100,000 population per year
● Rarely seen in those under 15 years of age
● Most commonly begins between 40 – 50 years of age



Like many other autoimmune diseases there is no known cure for rheumatoid arthritis. However, advances in medicine and continuing research are uncovering ways to manage and treat the symptoms. In addition, it is possible to ‘self-manage’ to a good degree by making appropriate lifestyle choices.

Spoonie Story: Sherry

spoonie story sherry

My name is Sherry. This is the first time i have written down all of the events that led me to where I am now.

spoonie story sherry

When I was around 13 I started having severe bladder and kidney infections. I went through testing and the drs never really had a solid answer why. When I was 17 I was hospitalized for 10 days for what the drs called a bad virus..i had a bladder, kidney, upper respiratory and blood infection. I was septic and resistent to antibiotics. This is when I felt my body change and go haywire. Let me add here that I was a very active teenager and even got into weight lifting in my late teens.

Then when I was 22 my mom died in a car accident and I unfortunately was following behind her in my car. It was horrible. While in therapy I learned how much anxiety I had.

I was in dental school studying to be a dental hygienist when I got pregnant with my first daughter. That’s when the hives started. Just one here and there nothing too serious. When my daughter was a couple months old we got custody of my 7 year old niece (my sister was a drug addict and passed away in 2009 from her disease). I stayed in school and had my second daughter. I was always tired and stressed but like all the stories I have read, passed it off as just being overwhelmed.

5 years after my mom died I lost my step father who raised me. I graduated from hygiene school and started to work full time, 16 hour days right away. I ended up having a severe gall bladder attack and then removal.

5 years after my step father died my father died. All my parents were under the age of 60 and i was 33 and parentless. I was getting sicker and sicker but blamed it on stress.

In 2007 and for close to a whole year I suffered with the worst hive episode!! I was covered and miserable. I went through all of the allergy testing because of course that’s what the drs said was wrong. The only thing that would calm them down was steroids.

Fast forward to 2010 and I was involved in a bad car accident and that sent me spiraling out of control. Severe pain, numbness, headaches, herniated disks etc. Finally in 2013 my spine dr sent me to a rheumatologist to get tested for fibromyalgia. I proceeded to tell him about my crazy medical past and he was intrigued. He sent me for the testing and long story short diagnosed me with fibro, SLE (lupus) and RA.

Last spring I got extremely sick again and was hospitalized for 12 days. That started with the flu but i also had an enlarged spleen and liver and was resistant to antibiotics. I also have an essential tremor that started while in the hospital. They also found bronchiactisis in both lungs. I was also diagnosed last fall with Sjrogens by my opthamalogist.

So here we are now. I have not practiced for a year. I am sick, nauseous, blurred vision, shakey, headaches, painful joints etc. My life has changed DRAMATICALLY over the last year. The emotional and financial toll has been so hard but I am so incredibly blessed with the most amazing husband, daughters, grandbabies and friends!!

I am thankful for this devastatingly beautiful life!! Thank you all for listening to my long story and for all of your support through these crazy years!!! ❤

Spoonie Story: Angie

spoonie story angie

It started with a phone call. “Ma’am I’m sorry to tell you this but you might have rheumatoid arthritis, we need you to come in as soon as possible for further tests.” My heart sunk. What now? What will become of my future? Do I have a future? What about my son? Who will take care of him if I’m sick? I knew nothing about rheumatoid arthritis other than the joint deformities and pain.

Now a days I’ve learned to cope with the pain. There’s pain and then there’s pain that reduces you to nothing but tears. In the beginning I thought the pain was bad but I had no idea what was to come.

spoonie story angie

My name is Angie or you might see a lot of my screen names ” bttrflyculture “. I am 22, I’ll be 23 in April and I’m married to my hubby and we have a beautiful 3 year old boy. I got diagnosed with Sjogrens Syndrome in January of 2015. I guess my body can’t make up its mind if I have lupus or RA or both because not all my symptoms line up.
I originally went in to see the doctor because I had bad skin irritation and thought my gall bladder was acting up.

When I was pregnant I had cholestasis and caused nasty itching. My husband and I were trying for another baby at this time so it made sense. Maybe I was pregnant? So I went in, got blood work done and was told it was probably dry skin and got sent home. A few days later I get a call and they said my makers were elevated and it’s possible I had rheumatoid arthritis. I thought “No this has to be a mistake. I’m only 21. There’s no way. I’m too young for this.” Then some time went by and all the pain began. I couldn’t open containers, jugs, doors, my hands were curled up and in pain. We started with just plaquenil and a saliva medication which for the life of me I can’t remember. (Thanks brain fog!)

Fast forward to March:
My husband and I never thought we conceived back in January. I had taken multiple pregnancy tests and they all came out negative. After I got my diagnosis, obviously we stopped trying and I got back on my birth control. I started feeling funny towards the end of February and started having a strong craving for sweets (banana pancakes to be specific) and blue Gatorade. I took a test and to my surprise it came out positive. My heart sunk. I was excited, nervous, scared. All of the above. On Friday I started getting some funny looking discharge but I didn’t think anything of it and went about life. Saturday, went to a family party and told everyone I was pregnant. Everyone was so happy and excited for us. Then life happened.

Sunday I went to the ER because of the discharge and they ultrasound tech said he didn’t see a heartbeat but I was 7 weeks and 3 days and that was normal. The doctor said the discharge was from an infection and gave me a gel to use and said to see my doctor asap. I called my OBGYN and they said they couldn’t see me til next week. Appointment day finally came and I went in and they told me If there was no heart beat then I had lost the baby already. I wanted an ultrasound just to make sure. I didn’t want to believe it. I didn’t even cry because I think my body was in such shock. I got all hooked up on the ultrasound machine and there she was. My baby was just there and not moving at all. Just still as could be. I saw she because I feel in my heart it was a girl. Even to this day my son talks about his sister and we’ve never talked with him about any of this.

On March 18th 2015 I had to take the pills to induce the miscarriage because my body wouldn’t register that I had a miscarriage. It was the most heart breaking night and painful night. I’ll never know why I lost the baby. I have a feeling it was either all the medication and medication changes or my body just attacked the baby. I think after that I just really wanted to give up on this body that had betrayed me so much already.

A year later and the oral medications still aren’t doing enough to help me so I have to give myself weekly injections of methotrexate and if that doesn’t help then infusions will come next. After that I don’t know what other options there are. I feel as though I’m running out of options.

As spoonies, we go through all these real life, raw moments and we keep going. We are strong warriors. If you have gone through this or worse then I salute you. You keep your head up and I hope my story will reach someone and help someone believe they aren’t alone. All I hope to accomplish with my writing is to help someone get through their rough time. This is all for you.

Spoonie Story: Annette

spoonie story annette

Hi, my name is Annette and I’ve been a Spoonie my whole life. I have several birth “uniquenesses”. I had surgery the day I was born where they removed a rib which caused scoliosis. I had open heart surgery when I was 4.

spoonie story annette

I was blessed enough to to have been able to deliver a beautiful baby boy when I was 19. I say this because after him I could not have other children. I met my wonderful hubby when I was 25, with him I also was blessed with a beautiful daughter (don’t like to use step-daughter because I raised her since she was 4). I was married for only a year when I had to have a hysterectomy, they found I had endometriosis and 2 uterus, they also diagnosed me with Fibromyalgia and found I had thyroid cancer. Was also diagnosed with migraines and cluster headaches. That was a very hard year.

Been happily married now for 20 years. Two years ago my thyroid cancer came back, had 2 surgeries to deal with that, because first surgery the results came back negative for cancer but the tumor came back. I also suffer with depression, Degenerative disc disease (DDD), Restless Leg Syndrome (RLS), and sleep apnea. Was diagnosed with rheumatoid arthritis, restrictive asthma and restrictive lung disease this past year.

With all that said, I’m a survivor. I’ve dealt with pain my whole life. I’ve always pushed through. I’m the person everyone relies on. I’m the caregiver of the family, like most moms. I’m on so many meds now and it’s starting to take its toll on me. It’s getting harder for me to walk, type, or basic things that others take for granted. I’ve had to go part time at my job and waiting on my disability.

I’m blessed with such a supportive family and friends who help me and totally understand when I have to take it easy. I have a beautiful granddaughter that is my heart, she keeps me going. I have other relatives that suffer from Fibro and arthritis including my mom and son. It’s so much harder for me to see them in pain. My faith is strong and is what really gets me through it all. At my lowest I just turn on my worship music and focus on God. I also love to color now, it’s very relaxing. I’m learning to focus on me and my health now because I want to be around for my family. I hope by sharing this others will know they are not alone.

Spoonie Story: Amber

spoonie story amber

Hi all, my name is Amber. I’d like to share my Spoonie story. In 2012 I went to bed one night normally and woke up in the hospital. My husband informed me that I had a Grand Mal seizure and was aspirating in my sleep. My amazing dog Bear started barking and pulled my husband off the couch, leading him into the bedroom to find me. I would not be alive without my doggie.

spoonie story amber
After my hospital stay I was diagnosed with Epilepsy (Tonic Clonic) which led to a positive Spinal Tap…Multiple Sclerosis! Oh joy. I have already had Rheumatoid Arthritis since I was 21. I lost my drivers license and had to stop working as a successful Paralegal. I was in shock and angry at the world.
Earlier this year I had neck surgery due to Cervical Stenosis…but..:

I still smile and still go on! I have pushed myself to the point of happiness and “feeling a-ok!” I take my insane amount of meds (lol) and sometimes even forget I am sick! It’s amazing what a positive attitude can do!!! I am no longer angry at the world, I am happy with everything else in my life and blessed with an amazing husband and dog(s).
I owe my life to Bear and now I am a fighter!!! I am inspired by the Spoonies For Life Facebook page and all of you that also fight everyday like me!!!

Spoonie Story: Ami


My name is Amorie, Ami for short, I’m 24 and from Cape Town, South Africa.

As of the start of 2013 I was experiencing very bad pains in my hands as well as severe back pain from around 2008. I have always lived with headaches and what we thought was growing pains, but now I know better.

ami1spoonie story: ami

In February of 2014 I was diagnosed with Rheumatoid Arthritis and was put on Methotrexate and later on I was put on Lyrica that year.. In 2015 I was diagnosed with Fibromyalgia on top of this and here I am.

I started studying my BSc in Medical Science at the University of Pretoria in 2013 to eventually do my Honours in Forensic Anthropology!

However, since I got so ill I had to lengthen my studies so that I have less subjects each semester. I have also developed issues with my hips so mostly I walk on campus with my crutches and I am allowed parking on campus as well!

Mostly I am just a young student trying to make a name for myself, while trying tonfight this awful battle. This year I am hoping to bring my pain levels down to a manageable amount so that I can do better at my studies..

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I have the cutest kitten on the planet and her name is Luna! She’s my sweet angel!

I am also a volunteer for The Reach for a Dream foundation, which is like the South African version of The Make a Wish foundation! I love bringing smiles and love into the lives of sick children and would do anything to ensure other people’s happiness, even if it costs me my own!