My Celiac Story: How I Found Out my Entire Family has Celiac Disease

celiac disease, gluten, elimination diet, autoimmune protocol diet, autoimmune disease

Let’s Start at the Beginning

I have had stomach problems since I was a teenager, but I took me a until I was in my thirties to figure out the cause of my issues was actually Celiac Disease. As a teenager, I always had terrible cramps and acid reflux. By the time I was sixteen, my doctor put me in acid blockers to try to control my symptoms. I took the medicine every day for years and it helped, but my symptoms still persisted. Being that I was sixteen, the doctor’s attributed the cramps to my monthly cycle and figured the acid blockers would resolve the rest. But they didn’t. I eventually just learned to live with the symptoms and go about my life. I thought this is just how my life would have to be. After all, I was feeling better, just not good.

When I was about twenty, my cramps became even stronger and more frequent and I was having trouble coping with the pain. I once again returned to my doctor, and he suggested that I do an elimination diet to see if what I was eating may be contributing to my symptoms. He suggested I replace the multigrain bread I normally ate with plain white bread or spelt which would be easier to digest and that I should eat a lot of yogurt, which has good probiotics and is easy to digest. He also prescribed a medication to help with the cramps. I made the dietary changes, took the medication, and it helped a little, but I was still suffering.

It’s Hard to Work when You’re Chronically Ill

While I was trying to figure out the cause of my gastrointestinal issues, I was also working a full-time job at a call center. This was the type of job that required you to clock in and out every time you took any kind of break. Even if you were just going to the bathroom, you were required to clock out when you left and back in when you returned. My symptoms had gotten so bad that I would have to go to the bathroom six or more times a day and I could be in there for ten minutes each time. Well, my employer took notice of this and I was called in for a meeting. As much as I tried to explain that I was legitimately ill and couldn’t help it, all my employer saw was the time and my contract was not renewed. After about six months, this extreme flare finally calmed down. My stomach ache and acid reflux were just a part of my everyday life, but we’re not so bad that it was disruptive to my day or my life.

celiac, bloating, acid reflux, abdominal pain

On Vacation, but not from my Symptoms

Some time passed and now I was about 26 and I went on a vacation to the Azores, Portuguese islands in the middle of the Atlantic Ocean. I looked 4 months pregnant! My stomach was extremely swollen and it hurt a lot. I had been been living on antacids and other medicines, but nothing was really working anymore. At the time, I thought my body may be reacting to the different foods I was eating. In this area, they tend to prepare everything using a lot of butter and I had stopped eating butter years ago, so I thought I must not be used to it anymore and that’s what was probably causing my reaction. I was convinced the butter was the cause of my problems. Even when I just ate a salad, which obviously had no butter, I still felt really badly. It was so extreme. I was only there for a week or two, but when I showed people pictures from my trip, my physical transformation was so drastic that people would ask me if I really was pregnant.

celiac disease, stomach pain, bloating, cramps, acid reflux, gluten, diet

I didn’t know what was going on. As chronic illness life goes, you get some bad days, then you get some good days. Every year you have is different. Still, I was undiagnosed and I went on with my life. All the while, I kept taking stomach liners, acid blockers, and other medicines for my bowels. This became my daily regimen in order to live without constant abdominal pains and cramps.

Making Changes

Some more time past and now I was 31 or 32 years old. I started researching more into my health and looking into natural remedies and the holistic way of living. I wanted to change my lifestyle to try to feel better. I had stopped eating sugar years prior and it made me feel so much better, but I noticed after a couple of years, the effects of that wore off or something. I decided to make some other changes I hoped of regaining that feeling. I knew I had to do something drastic. That’s when I started the autoimmune protocol diet. For this diet, you cut out all sugar, lactose, gluten, rice, seeds, and beans and then slowly start reintroducing them back into your diet to see which ones are aggravating your body. For me, cutting out gluten was the hardest. I’d literally dream of bread and croissants and pizza. It was crazy!

celiac, diet, autoimmune protocol diet, elimination diet, gluten, food allergies

After being on the autoimmune protocol diet for about 3 or 4 months, I really did start to feel better and I tried to introduce things back into my diet. During that time, I would get together with a group of friends monthly, and we would cook and eat dinner together. This day, we each brought something to be grilled and so we would all prepare the food and then share it amongst the group. One of my friends made something breaded. I don’t remember what is was, but it was being cooked on the same grill with everything else. As I was still not eating gluten, I did not eat the breaded food, but instead partook in the other options. but it was in the same grill.

By the time I got home and I was so sick! I got cramps and I had major brain fog. I couldn’t think straight. I was sweating profusely and was sick and exhausted for three days. I thought this was an extreme reaction, so I started doing research into what could have caused it. That’s when I discover the cross-contamination that can occur with gluten. Still, I was surprised that I had such a strong reaction. I learned that this is actual quite normal when someone is exposed to gluten after long periods of time without it.

My Daughter is Following in my Footsteps

About six months later, I noticed my daughter, who was about four at the time, was very tired and cranky all the time. She was a picky eater and would only really eat bread, potatoes, doughnuts, and of course candy. This seemed strange to me, so I brought her to he pediatrician thinking she may have picked up a bacteria or parasite somehow. We went to the doctor and had her tested, but the tests were negative for any bacteria or parasites. Still, I knew something had to be wrong, so I asked her doctor what else could be done. He told me there were two things we could try. The first option was to virtually turn her inside out running tests to look for anything and everything. Since she was still so young, her doctor thought that would be extreme. The second option was far less invasive. He suggested eliminating gluten for about two weeks to see how she responded. This made a lot of sense to me in light of my own experiences with gluten, so we decided to give it a try.

kids, celiac, symptoms, gluten

Going gluten-free was very upsetting to my daughter at first. She had seen the strict autoimmune protocol diet that I had been following and thought that was what she would have to do too. I explained to her that what she was doing was not nearly as strict. She would not have to give up everything, only the gluten. Over the next three days, we finished all the bread and doughnuts and other gluten-containing foods in the house and went 100% gluten-free. The rest of my family wanted to support, so they stopped eating gluten too so she wouldn’t feel so badly. Her dad, my mom (her grandma), and my sister (her aunt) all gave up gluten so my daughter wouldn’t feel alone.

After four days, I had a different child. She had energy and was not so cranky. I could hardly believe the difference! Just by not eating bread, cookies and other gluten-containing foods, I had my daughter back. I still let her have some treats, like cake, but she ate the gluten-free kind instead, as I wanted her to still be able to eat similar foods to what she was used to. After a month, we went back to the doctor to report how it had gone. The doctor said that her improvements indicated that she has celiac disease.

It’s in my Genes!

By this time, my daughter was feeling better and had gotten accustomed to eating the gluten-free foods, so my mom and sister thought it would be okay for them to go back to eating the regular bread and other foods they had given up to support my daughter, but their bodies had other plans. When they ate regular bread again, they got really sick. Unbeknownst to all of us, we all had celiac disease.

It all made sense now. As a baby, my daughter had the worst acid reflux. She couldn’t hold her milk down and she never wanted to eat the porridge. It was difficult to make her eat stuff because she couldn’t keep it down. Thankfully, now we know why. She had been diagnosed with celiac when she was 4 and now we know that it tends to run in the families.

autoimmine, causes, genes, celiac, environment

Everything is Starting to Make Sense Now

It took me over 30 years to figure out that I have celiac disease. I believe that many of my autoimmune issues stem from me having undiagnosed celiac disease. Celiac disease is an autoimmune disease in which your own immune cells track the gluten enzymes within your small intestine. Your body is basically attacking itself. Looking at my timeline of all my diagnosis, I think this could be the cause of many of my chronic illnesses. I started having my Graves symptoms at 16, but I only got diagnosed at 19. Then at 28, I had Hashimoto’s Disease that went undiagnosed for about 6 years. After my Hashimoto’s diagnosis, I started having Raynaud’s disease, which is also an autoimmune disease that effects blood flow. If you don’t figure out what’s causing autoimmune conditions, they have a tendency to accumulate. Since I discovered my celiac disease so late, I wonder if that may have been the catalyst for my other conditions. I may never know.

I hope my family’s story helped you in some way. I know by sharing my experiences with my own family, my mom and sister have given up gluten and are now feeling better. It’s not for everyone though. Some people have experimented with going gluten-free to try to lose weight or think it’s the cure for any ailment, but it’s not. Going gluten-free is not necessary for everyone. If you think you may have celiac or be gluten intolerant, talk to your doctor and consider trying an elimination diet to find out. Some people can eat gluten with no problems, but for those with celiac, it is a real and serious autoimmune condition that effects their daily life and not just another dietary fad.

celiac disease, autoimmune disease, diet, genetics, gluten

Carole’s Chronicles: My Journey with Invisible Disabilities

It was a glorious day to have our lunch break outdoors. Imagine my surprise to feel stinging on my shoulder. Since I was wearing a wide-necked peasant blouse and we were sitting under an olive tree in the courtyard, I presumed a bee got me. But repeatedly? Thus began my forty year journey with invisible disabilities.

The Griffitts Family

We—my husband Joe, our seven and ten-year-old sons, and myself—lived on the Seminary campus overlooking San Francisco Bay in beautiful Marin County, California. I had worked as an office worker so Joe could complete his B.A. after he finished 4 years in the Air Force. I then worked in Library Services at the Seminary while Joe worked on his three-year master’s degree to be a pastor and Army Reserve Chaplain.

First Injury

Over the next few days, the stinging turned into severe back pain. When I could get in to see the doctor, she put me on complete bed rest and heavy doses of Tylenol and aspirin. I had torn “every muscle on the right side of my back from my waist to upper back.” After several months of bed rest, the doctor allowed me to return to work for an hour a day, gradually increasing the time. She also prescribed extremely mild exercises. It took a year to return to 95% of pre-injury normal. During that year, Joe and our sons took care of me as well as doing all the housework. Joe also continued studying for his master’s.

The medical community could not understand the reason for the injury, although they knew my job caused it. “Just one of those things!”, they said. Then—oh, no—the exact same injury occurred again one year later. And even though I stopped the activity sooner and followed the same treatment, the outcome was significantly different. Maybe 50% recovery.

Joe graduated at the end of that year. We moved to northeast Washington where he began his career. Our sons graduated high school there and went on to college. They are now both professional men with families of their own. Sometimes, I wonder if the hardships of growing up with a mom with serious limitations actually strengthened them.

First Diagnosis

Several years after Joe’s graduation, I came across information about post-polio syndrome, also known as PPS (1). It sounded like a reasonable diagnosis as I had had polio (from which I “fully” recovered) at age two. Doctors disagreed on the diagnosis of PPS. One specialist even said I didn’t have it, as he didn’t believe there was any such thing! Anyway, the symptoms never completely fit although it did explain the fatigability. It never quite explained why my back spasmed so easily. As the weakness and fatigability increased, my life became more limited and my family had to take up the slack. Friends helped us at times.

Second Diagnosis

Seventeen more years passed before we found the next piece of the puzzle: cervical and writer’s dystonia (2). Over the years, my right hand developed odd movements and became more difficult to control. My neck and shoulders got tight, causing pain at times. The doctor began Botox injections in my neck and shoulders, which gave me great relief. Botox, which paralyzes muscles, is only temporary and must be repeated every three months. Yuck! We left the hand alone since it wasn’t that bad. The medication we tried didn’t work.

The Last Major Diagnosis

Another four years passed, and Sjogren’s (3) entered my life. It usually only causes dryness issues, but once it goes beyond those glands it can affect anything in the body. Of course, it triggered other neurological problems–what else! It also caused Raynaud’s (4) and gastroparesis (5).

Even More

Somewhere along the line, dysphagia (6) and breathing muscle problems evolved. Polio slightly weakened my breathing muscles, but my lungs remain unaffected. Either polio, dystonia, or Sjogren’s caused the dysphagia.

A few years ago, the neurologist added the diagnosis of generalized dystonia, which means the dystonia is genetic. That answered the question about all the unusual, but not serious, oddities I experienced as far back as young childhood. I consider myself very blessed because most children born with generalized dystonia have a very severe form.

No one thing by itself would be disabling, but everything together is quite difficult to live with. Individually. each condition could be worked around but the combination makes for unique problems, some of which remain undiagnosed.

Medical definitions

(1) “Post-polio syndrome is a new condition that affects the survivors of polio decades after the acute illness of poliomyelitis. The major symptoms are pain, fatigue and weakness. New weakness is considered the hallmark of post-polio syndrome. Less commonly, survivors may have new sleep/breathing/swallowing problems and some survivors may also experience muscle atrophy or muscle wasting.

(2) Dystonia is a disorder that causes muscles in the body to contract and spasm involuntarily. Individuals who are affected by dystonia cannot control or predict the movement of their bodies. Symptoms of dystonia do not appear the same in every patient. Dystonia may affect a specific part of the body or many parts simultaneously.

(3) Sjogren’s syndrome is a systemic autoimmune disease which primarily presents with dryness of mouth, eyes, and skin. It can cause profound fatigue, and can affect any organ in the body: the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. It often occurs with rheumatoid arthritis, lupus, or scleroderma. Sjogren’s increases the risk of lymphoma. Symptoms can be mild or debilitating; they can remain steady, worsen, or occasionally get better.

(4) Raynaud’s is a vascular disease causing cold toes and fingers due to spasms of blood vessels. It may also affect lips, nose, or ears, but this is rare.

(5) Gastroparesis involves weakness of the muscles of the stomach, or the nerves controlling those muscles. It causes mild to severe digestive problems. Another name for it is slow stomach.

(6) Dysphagia, difficulty or discomfort in swallowing, can be as mild as feeling a lump in throat or as serious as the inability to swallow. Aspirating food is possible. Neurological disorders, including stroke, are a common cause.


About the Author

Carole Griffitts has lived with invisible disabilities for forty years.

Carole and Joe at Logan Pass

She and her husband/caregiver live in northeast Washington state. They love nature, and she uses her scooter to sometimes accompany him on his hikes. She uses her laptop, called Expanded World, to connect with others. Her website, for and about people living with invisible disabilities, is

From Raynaud’s to GERD: My Chronic Illness Voyage

Where do I even begin…? December 2016 would be good start.  The date where it all began. I remember it all so vividly, it’s like my eyes weren’t really open until December hit and boy was I in for a surprise.

December 2016

The weather was around 9 degrees and icicles had begun forming under my nostrils. Despite the weather I was getting my life started. I was looking for work, starting driving lessons and ultimately beginning to feel like an adult. It was about the start of December when my feet started acting weird. They looked like they belonged to a corpse. I’d wake up and my toes and fingers would be purple. They would feel like pins and needles or I couldn’t feel them at all. I didn’t have time to piece things together though. I was beginning my adult life. Onwards and upwards my friend. Driving lessons were around the corner, I mean, I was so excited, who wouldn’t be?

A few weeks had passed and it felt like I had been driving for years. Then in mid-December I woke up with distinctly purple toes. I’m not talking a light bruise sort of purple. I’m talking deep purple, like black purple. I brushed it off though, like heck, my body’s weird already. I’ll just add that to my list of oddities. I hopped into the car and hit the clutch … WOWZERS … I can still remember the pain. It was like someone pushing my feet into a pile of needles. Why the hell did I feel like that? I walked myself home and immediately threw my shoes off. On two of my toes, on both feet there was a circle, a perfect circle on the sides, purple, soggy looking and green under the nail, gross right?

I decided to put my life on hold. Not because I wanted to, no, because I HAD to. Two months of not doing anything, having to cancel everything as walking became a chore. I was gutted, no interviews, no driving and generally not doing anything other then laying or hopping around the house. It was time to see the GP. I so dread a GP visit.

After the first GP visit I had I was told it was a benign Neuroma.  I was referred to a rheumatologist for an ultrasound of my feet (how exciting!!!). A month had passed (3 months altogether) and whatever it was on my feet was still there, so another GP appointment was in store for me. Deep joy…

March 2017

Hospital time. I had been referred to a rheumatology department by my GP, for what I thought was just cadaver looking toes. It turned out to be chilblains, which then turned out to be Raynauds. Raynauds? What in the world is that? Sounds like a fancy French dish to me.

“Raynauds is a condition of the circulatory system in which blood vessels in the fingers and/or toes spasm in response to changes in temperature, which causes them to turn white, blue, purple and red as the supply of oxygen is diminished. Raynauds may occur alone or be part of another condition.”

Now that’s what scared me “may be a part of another condition”.

July 2017

Oh man, it’s hot … 30 degrees and sweat is dripping off of every orifice I have (TMI I know). I have now been officially diagnosed with Raynauds for a while so it had become a part of me; I was trying to figure out ways of dealing with it and trying to cope. Luckily summer wasn’t much of a problem for the cold. What was a problem though was the heat. My feet looked like raw chipolata sausages, bright red and so sore, not sore as in a cut sore, sore as in I’ve only been standing for 5 minutes but it feels like I’ve been standing in the heat barefoot on hot sand for an hour. The heat was affecting me more then usual and this was when I took to finding support on Facebook groups. Everybody had started mentioning something called Erythromelalgia to me. Now what in the world is that? Sounds hectic and man were they right about it.

October 2017

Another hospital appointment folks, how fun. I showed my rheumy all my photos I had compiled of my tomato toes and sausage hands during the summer hoping, but dreading something would come of it.

Ah, Erythromelalgia. They were right.

“Erythromelalgia (EM) is a rare condition that primarily affects the feet and less commonly the hands. It is characterised by intense burning pain of affected extremities. Severe redness and increased skin temperature.”

This wasn’t all I had found out.  I also have low blood pressure and a positive ANA. A positive ANA (Antinuclear Antibody) means there is an antibody within my body fighting everything, my blood, organs, the lot. The ANA will usually show you what secondary Raynauds you may have, whether that is Lupus, Scleroderma or a rarer condition.  They have no clue what it may evolve into or if it will evolve into anything else at all.

April 2018

Who’s ready for some more weirdness?

This really nasty stuff starts happen to my fingers. That’s not only the best way to describe it, but really the only way I can describe it. In a nutshell all 10 of my fingers:

  • Form crusty calluses around and under my finger nail
  • Have brown, red and purple spots around and under the fingernails
  • The whole finger becomes incredibly sore, the smallest of things that come into contact with my fingers makes me flinch with pain
  • The whole finger, from knuckle to nail, itches like crazy

It came totally out of the blue, on all fingers and has continued on and off since December 2017. After a trip to the GP, she ruled out a fungal infection and referred me to see a dermatologist. The dermatology appointment was fantastic. She looked at all the photos I had taken and asked for me to send them to her, not only to be put in my file, but to be used for research. I received a letter from the appointment a few weeks later stating I have another appointment in November for a scratch test (to see if its an allergic reaction). However the doctor believes it to be Subungual Hyperkeratosis and/or Pompholyx.

March 2018

Snow. Snow everywhere. Thick socks, a hat, gloves, winter boots, winter coat and jumpers. Yet my toes would not take to the warmth. Then came the EM. Once I tried to warm myself up the EM would flare up. Ergh, when will this ever end?

It was a few weeks into March when I woke up at 4 in the morning feeling like I was going to puke, that uneasy feeling in my stomach and the light-headedness. Nothing came out, but that feeling never left. I went into work feeling like I was going to vomit everywhere. It makes you feel on edge, like what if I did puke everywhere? How embarrassing. The only thing that stopped this feeling? Eating. I decided to visit my nearest pharmacy.  They informed me that it sounded like acid reflux, but if this problem persists longer than a week then a GP visit should happen. It was time for yet another GP appointment. Turns out that it is in fact GERD.

“Gastroesophageal reflux disease, or GERD, is a digestive disorder that affects the lower esophageal sphincter (LES) the ring of muscle between the esophagus and stomach.”

Great, another thing to add to the list. On the plus side though, I was prescribed meds that completely made it vanish. Since then it has vanished unless I eat or drink something my stomach doesn’t like such as juice, a fizzy drink or weird fruits and vegetables.

June 2018

My rheumy appointment hath landed, it was same old, same old really. Until I mentioned joint pain. My pain is really weird, it used to last a week a month on just my right wrist and right ankle. Now, it’s still in the same places, but pops in every day. That’s when my rheumy mentioned “”Hypermobility”.

“Joint Hypermobility Syndrome is a condition that features joints that easily move beyond the normal range expected for that particular joint. Hypermobile joints tend to be inherited.”

Explains why my hip pops out of place every now and again though. I dread to think what this means for the future. That’s where today comes into play; onwards and upwards all.  I have four more appointments this year, three dermatology and one rheumatology.  As you can see, it’s become a habit that at every appointment that I have something new diagnosed.

Stay tuned though. I’ll be sure to keep you all updated on my roller coaster of a journey.


Bethany is a 20 year old from England; she suffers from Raynauds, Erythromelalgia, GERD, Hypermobility, Anxiety and Depression. She is also the creator of Young, Sick and Invisible a Chronic Illness Blog.

Spoonie Story: Lois Woken

lois w


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.

lois woken2






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


Rауnаud’ѕ phenomenon-All Yоu Nееd To Knоw

raynauds phenomenon

Raynauds’ѕ phenomenon, also known as Raynaud’s dіѕеаѕе, is a dіѕоrdеr оf the blооd vеѕѕеlѕ that ѕuррlу blооd tо the ѕkіn. Thіѕ condition саuѕеѕ the fingers, tоеѕ and оссаѕіоnаllу the еаrѕ, nose, tongue, knees and nipples tо feel cold and numb.

A tурісаl Rауnаud’ѕ аttасk оссurѕ іn ѕtаgеѕ аnd mау арреаr as fоllоwѕ

The раrt оf thе bоdу fіrѕt аffесtеd bесоmеѕ whіtе аѕ a rеѕult оf thе rеduсtіоn in blооd ѕuррlу; nеxt, thе арреаrаnсе оf a bluе tіngе оссurѕ аѕ оxуgеn bесоmеѕ dерlеtеd іn thе аrеа rеd іndісаtеѕ thаt thе blооd ѕuррlу hаѕ rеturnеd tо nоrmаl.
It ѕhоuld bе nоtеd thаt whіlе thе аbоvе еxреrіеnсе is соnѕіdеrеd tурісаl, nоt еvеrу реrѕоn wіth Rауnаud’ѕ dіѕеаѕе еxреrіеnсеѕ thеѕе сhаngеѕ nor dо thеу hарреn in еvеrу attack.



Thе оrіgіn оf Rауnаud’ѕ disease rеmаіnѕ unknоwn, although, ѕоmе thеоrіеѕ ѕау thаt аn аntіbоdу іmmunе rеѕроnѕе mау bе іnvоlvеd. Thіѕ іѕ ѕuрроrtеd bу thе fасt thаt раtіеntѕ wіth Rауnаud’ѕ hаvе аbnоrmаl immunologic tеѕt rеѕultѕ.
Othеr thеоrіеѕ fоr Rауnаud’ѕ dіѕеаѕе talk about vascular hуреrасtіvіtу thаt іѕ caused by соld tеmреrаturеѕ or еmоtіоnаl ѕtrеѕѕ. Hоwеvеr, thе ԛuеѕtіоn оf whу the blооd vеѕѕеlѕ оvеrrеасt rеmаіnѕ unаnѕwеrеd.
Tо lеаrn mоrе аbоut Rауnаud’ѕ іt іѕ uѕеful tо fіrѕt gаіn аn undеrѕtаndіng оf thе wау that thе bоdу соnѕеrvеѕ hеаt and whаt hарреnѕ whеn іt іѕ fасеd wіth a сhаngе іn tеmреrаturе…
Yоur bоdу, to kеер іtѕеlf warm, rеduсеѕ blооd сіrсulаtіоn tо thе fіngеrѕ аnd tоеѕ. Hоw? It асhіеvеѕ thіѕ bу nаrrоwіng thе ѕmаll аrtеrіеѕ undеr thе ѕkіn оf the еxtrеmіtіеѕ. Thіѕ іѕ a normal response but реорlе suffering wіth Raynaud’s dіѕеаѕе become еxtrеmеlу ѕеnѕіtіvе tо соld аnd thе аrtеrіеѕ thаt go tо thеіr fіngеrѕ аnd tоеѕ gо іntо “vаѕоѕраѕm”.
Bесаuѕе еxроѕurе tо соld tеmреrаturеѕ саn hаvе a drаmаtіс іmрасt оn sufferers ѕіmрlе thіngѕ lіkе wаѕhіng hаndѕ wіth соld water, tаkіng ѕоmеthіng оut оf thе frееzеr оr соmіng іn contact wіth a соld wіnd may trіggеr аn аttасk. In some реорlе a ѕtrеѕѕful еvеnt іѕ еnоugh tо рrоvоkе a Rауnаud’ѕ аttасk.

Tуреѕ оf Raynaud’s Dіѕеаѕе

Prіmаrу Rауnаud’ѕ Thіѕ hарреnѕ when thеrе іѕ nо оthеr underlying condition аѕѕосіаtеd wіth thе disorder аnd mоѕt соmmоnlу аffесtѕ the hаndѕ аnd fееt.
Rауnаud’ѕ Phеnоmеnоn This іѕ also knоwn аѕ Sесоndаrу Rауnаud’ѕ аnd іѕ a соndіtіоn оftеn аѕѕосіаtеd wіth аutоіmmunе dіѕеаѕеѕ or соnnесtіvе tіѕѕuе dіѕоrdеrѕ ѕuсh аѕ ѕсlеrоdеrmа, ѕуѕtеmіс luрuѕ, роlуmуоѕіtіѕ, Sjоgrеn’ѕ syndrome, rhеumаtоіd аrthrіtіѕ аnd саrраl tunnеl ѕуndrоmе.

Sуmрtоmѕ оf Rауnаud’ѕ Dіѕеаѕе

Common Rауnаud’ѕ dіѕеаѕе ѕуmрtоmѕ іnсludе соlоr сhаngеѕ іn thе ѕkіn аnd numbnеѕѕ аnd pain duе tо thе dесrеаѕеd flоw оf blооd. A tіnglіng fееlіng, ѕwеllіng аnd раіn may occur аѕ сіrсulаtіоn іmрrоvеѕ.
Rауnаud’ѕ Phеnоmеnоn соuld dаmаgе уоur skin and thе ѕоft соnnесtіvе tіѕѕuеѕ іn thе аffесtеd аrеа.
Addіtіоnаllу, ulсеrѕ аnd blisters mау dеvеlор, bесоmе іnfесtеd аnd tаkе ѕоmе tіmе tо hеаl. Sеvеrе саѕеѕ саn lеаd tо gаngrеnе аnd thе loss оf a fіngеr.
Rауnаud’ѕ аttасkѕ mау аffесt one оr two fіngеrѕ оr tоеѕ and thе аffесtеd dіgіtѕ саn bе dіffеrеnt еvеrу tіmе. Evеn thоugh Rауnаud’ѕ Phеnоmеnоn іѕ nоt a lіfе threatening disease, ѕеvеrе саѕеѕ саuѕе disability and аttасkѕ mау grоw mоrе severe.


Thе mаіn gоаl оf Rауnаud’ѕ dіѕеаѕе trеаtmеnt іѕ tо рrеvеnt оr rеduсе thе numbеr аnd ѕеvеrіtу оf thе attacks; thе ѕесоndаrу gоаl іѕ tо рrеvеnt tіѕѕuе dаmаgе. Wіth rеѕресt to mеdісаtіоn thеrе аrе ѕоmе drugѕ thе dосtоr mау рrеѕсrіbе tо dilate blооd vеѕѕеlѕ аnd іmрrоvе сіrсulаtіоn, hоwеvеr, thеѕе drugѕ аrе nоt ѕресіfіс tо Rауnаud’ѕ disease аnd mаnу оf thеm hаvе ѕіdе еffесtѕ.

Kеу Pоіntѕ

Drу bоdу bruѕhіng” may hеlр іnсrеаѕе сіrсulаtіоn. Onсе a dау, ѕtаrtіng аt thе fееt, rub thе bоdу wіth a wаѕhсlоth іn a сіrсulаr mоtіоn uр tоwаrdѕ thе hеаrt; аll bоdу раrtѕ аbоvе thе heart аrе rubbеd downwards.
If уоu lіvе in a рlасе with seasons, wеаr a ѕсаrf, glоvеѕ оr mіttеnѕ аnd a gооd раіr оf ѕосkѕ аnd bооtѕ аt аll tіmеѕ durіng thе соldеr mоnthѕ. A hаt іѕ аlѕо vеrу іmроrtаnt ѕіnсе the bоdу lоѕеѕ a lоt оf hеаt thrоugh thе hеаd. Wеаr lауеrеd сlоthіng аnd a warm соаt wіth lоng сuffѕ.
Durіng thе wаrmеr mоnthѕ іt іѕ good tо hаvе a ѕwеаtеr hаndу аѕ аіr соndіtіоnіng саn trіggеr аn аttасk. If уоu аrе іndооrѕ, wеаr ѕосkѕ аnd lоwеr thе аіr соndіtіоnіng аt home; nеvеr wаlk around bаrеfооt.