Sheena ‘s Journey with Cryoglobulinemia & Lupus

Life Goes On-Cryoglobulinemia

Sheena Carlson 2018      My New Normal, Living With A Rare Disease.







Sometimes, just sometimes, I find writing helps. But I find it difficult writing about illness. And the thought of subsequently publishing it gives me chills, as I’ve always been a person that really dislikes publicly admitting any hardship. Over the last while, I have found some solace in talking with others facing the same diseases and simply knowing that I am not alone facing them is and was a great help. Perhaps I could provide some commiseration to others in a similar situation or bring some awareness to the struggles that people living with a chronic illness face. So here is my story…

Throughout my 34 years, it seems that I’ve always dealt with some sort of medical issue. For many years it was migraines. I think I was in grade 5 or 6 when my first one struck like a thunderclap and left me curled in a ball in the school office delirious from the pain. Until I had my first child, those years were marked by very frequent tests, doctors visits and times when visits to the hospital for more effective pain medication happened multiple times a week. Once I had my son, my migraines became more and more rare, which doctors theorized was due to a change in hormones. I was happy and healthy. Ate well, slept well and spent a fair bit of time at the gym.

Then came the myriad of issues with my digestive system. I’ve had a number of minor surgeries for this, with parts and pieces removed, repaired or simply diagnosed; though many issues still plague me to this day.

Throughout this joyous time, I completed my welding apprenticeship and was enjoying my career. I truly liked the hard physical work. Over time, joint pain started sneaking up on me. I couldn’t squat or kneel, stairs were painful and ladders were impossible. I had numerous surgeries on both knees, some of which resulted in my being in a full leg immobilizer for months at a time. The pain and mobility never did improve significantly and eventually had to make some changes to the career path I loved. I moved into a more office based but still related role. I adapted and was accepting of it. But life threw me yet another curveball. And this time, instead of being able to catch the ball (or at least dodge it), it hit me smack dab in the face and knocked me on my rear.

Last year I started feeling more and more tired. And regardless of how much sleep I managed to get, I always woke up without feeling at all rested. The kind of tired I used to feel after weeks of working 7 days a week, 12 hour days consecutively doing physical work didn’t even compare. And I felt as if I had been in the gym the day before, pushing myself harder than I had ever done. The joint pain and stiffness for first few hours of every morning were (and still are) hellish. My legs started swelling, not just my ankles, but all the way above the knee. I started becoming out of breath after a flight of stairs. I had dark patches all over my face. My fingernails were twisted, bumpy and curling. I’d be covered in blisters from being out in the sun for short periods. Hands and feet always felt frozen and went pale or reddish in cool weather. Dizziness, nausea and blurred vision were frequent. The majority of my back has the appearance of a massive patterned bruise. My headaches returned with a vengeance. My memory, one of my best and most dependable assets, started to slip and even noticed that I would find myself ‘losing words’ mid-sentence.

I visited my family doctor and was sent for many tests. Nothing conclusive. He referred me to a specialist in internal medicine. My specialist was a wonderful lady but after multiple appointments and hundreds of tests (no exaggeration, I kid you not) that gave no definitive answers, she took a rheumatologist friend out to lunch and asked her for some input or advice. Not long after, I was sent to the rheumatologist and sent for another battery of tests. I walked out of her office that day with a fistful of requisitions that had nearly every test on every page ordered and multiple imaging tests booked. Many of them were genetic and cellular tests that needed to be sent to specialized labs.

Finally, after another couple appointments and yet more tests, my rheumatologist has diagnosed me with systemic lupus erythematosus (SLE) with cryoglobulinemia. But apparently, I’m an oddity. Having Lupus without antinuclear antibodies (ANA) present is rare but I repeatedly test positive for anti-double-stranded DNA (anti-dsDNA) which is more specific to SLE. I’ve also tested positive for cryoglobulinemia which led to a diagnosis of cryoglobulinemia secondary to the SLE. What is cryoglobulinemia? Well, it’s a rare disorder, a type of vasculitis caused by abnormal proteins (antibodies) in the blood called cryoglobulins. In cooler temperatures, these proteins become solid or gel-like, which can block blood vessels and cause a wide variety of problems depending on where blockages or blood flow restrictions occur. Any system in the body can be affected including kidneys, lungs, skin, heart, brain and anywhere in between. Staying warm is the primary way to prevent complications. Scouring the internet for information on Cryoglobulinemia secondary to an autoimmune disorder as opposed to a diseased caused by HCV has been extraordinarily difficult. But so far, I’ve been lucky compared to many others with the disease. I’ve been able to meet a few other people online with Cryo and they have been incredibly helpful. Some of their stories are scary and heart wrenching. Many have had amputations, organ failure or faced other life-threatening consequences of the disorder.

And sometimes isolation and fear overwhelm me. I desperately miss being able to do everything I used to. I’ve always loved being outside, but now with the photosensitivity that can bring on Lupus flares or cold-induced problems from the Cryo… it seems that being inside, out of the sun, in a temperature controlled environment is an important way to reduce the frequency and severity of flare-ups or organ damage. I miss sleeping in until 10 or 15 minutes before I have to wake the kids up for school…I now wake up at 5 am to take meds just so that my joints and muscles have the opportunity to loosen up a little bit before I have to get the kids up and ready at 7 am. I miss working, most of the time I really enjoyed going to work and solving challenges as they arose (as well as the face to face interaction with other adults). I hate having to ‘budget’ my energy; if I feel pretty decent I still have to avoid overdoing it, as I’ll always pay for it to over the next few days… leaving me teary-eyed, medicated and still trying to act as normal as possible for the sake of those around me.

Caught among my whirlwind of medical jargon, endless researching and feeling of foreboding, are my amazingly supportive husband and 2 wonderful children.

Due to circumstance, my husband has to work out of town during the week. I know he would love to be closer to home to help more with the day today, but it’s just not feasible at the moment and he does whatever he can on his days off (and I’m sure that it’s incredibly stressful and tiring for him too). A nicely maintained yard and a very clean home have always been very important to me and I’m struggling to change my priorities and lower my standards a bit. So what if my windows have some fingerprints? Or I don’t wash walls as frequently? Or my ceiling fan needs to be dusted? 

But the gnawing ‘mom-guilt’ is a never-ending battle. I feel terrible that my health is a frequent determinant of the activities the kids can be involved in (having friends over, participating in extracurricular activities or doing other fun things that involve significant parental participation). I hate that my youngest, that can’t stay by himself at all yet, has to miss school every time I have a morning specialist appointment that involves traveling to a major center. I hate that the boys have learned to cook a few small meals, not initially because they wanted to learn, but simply because sometimes Mom just is not able to. They are both very helpful and empathetic though; either one seems to be able to recognize the subtle changes in my movement, see the grimaces I try to hide or the slight change to my voice that means it’s a day where I’m not doing very well. And I must say, between the two boys (8 & 13), they can make a great dinner of, for example, baked mushroom pork chops, rice, and steamed veggies. On the bright side, I’m confident that they will grow up to be capable adults that are able to confidently cook varied meals, do their own laundry, identify and use a vacuum and know how to change an empty toilet paper roll in stark contrast to the comical millennial stereotype.

In all seriousness, chronic illnesses differ from a normal, temporary illness (like a cold, flu, infection) in, that when a ‘healthy’ person gets sick, regardless of how terrible you feel, you can always look forward to improving, feeling better and carrying on with your life as it always was. The passage of time while you’re ill with a ‘temporary’ illness is a blessing, bringing you ever closer to being ‘back to normal’. For someone with a chronic illness, the passage of time is terrifying.

By many standards of the conditions of which I face, I’m doing pretty well so far. But I cannot look forward to a major improvement over the years ahead.

There are shorter-term treatments that can relieve some symptoms, like steroids, chemotherapy (eg. Methotrexate which I am on) or biological drugs; which are unpleasant and some, like the biologics are extremely expensive and not often covered (in my neck of the woods anyway). Another of the drugs I am on, that I will likely be taking for the rest of my life typically reduces the frequency/severity of flares but there is no cure.

As I adjust and learn to accept my ‘new normal’, I have to remind myself of the positives and make the conscious effort to find happiness and purpose wherever I can. Life goes on and so must I.

****If you (or a loved one) have been diagnosed with Cryoglobulinemia, I highly recommend visiting the  “Alliance For Cryo” website and joining their great support group on Facebook.





Elba Giant World Birthplace: Puerto Rico resides: USA



I would like to share my health experiences with the intention of helping others within a group of patients that suffer different symptoms that have made their doctors suppose different diagnosis because of the complexity of the clinical pictures. They are called rare diseases.
My health during infancy was quite complex. I was born in 1951, year that delimits a stage of medicine and the beginning of many vaccines. Before I was born I swallowed amniotic fluid which produced cyanosis in me but with the good luck of no brain damage. Around the age of 6 months I had an accident where I had a small head injury which required stitches and an anti-tetanus shot. Within less than 6 months later I again suffered another head injury and my doctor failed to read in my record that he had already given me the anti-tetanus shot just a few months earlier. My body went into respiratory and cardiac arrest. My father was the one to provide CPR since the doctor couldn’t/didn’t react as he realized he made a mistake.

When I turned about 2 years old I was inoculated with the proper vaccines including polio. Unfortunately it appears that the vaccine was defective and some of the children inoculated with it developed polio, I included. My right leg was affected. I had severe pain through all my childhood even thou I received physical therapy and wore special orthopedic boots. By the time I became and adolescent I had supposedly gotten over it but, as far as I remember, that leg always hurt and I was also tripping and falling all the time (clumsy?.) My mother placed me in ballet classes as a mean to exercise my muscles, recommended by the doctors and therapists and I loved it as well as Spanish flamenco dance. I did rather well and stood out because of my desire to overcome my limitations and my love for dancing.

At the age of 8 I jumped off a swing and landed on my neck and had another respiratory arrest. Because of this accident my cervical vertebrae was injured. I also had a few other falls in which I broke my coccyx.
At the age of 9 I had my tonsils and adenoid glands removed due to recurrent infections and inflammation that made it hard for me to breathe. From my teen years on I had frequent muscle spasms and hypoglycemic attacks where I almost lost consciousness. I also suffered from asthma and bronchitis which were treated with antibiotics and penicillin amongst other meds. Before my menstrual cycle began I also had severe abdominal pain and
light-headedness. Once I started menstruating I would have hemorrhages and sometimes I would not ovulate in months. But when I did, it was very painful, heavy and sometimes with brown period blood.At the age of 17 I had exploratory surgery due to high levels of white blood cells and extreme abdominal pain. My appendix was removed (it was about to burst.) They also found my ovaries covered in gelatinous tissue. This was my first endometriosis diagnosis.
At the age of 21 I got married but was unable to become pregnant so the doctor started me on fertility treatment with Clomid. I became pregnant and had my baby delivered by C-section due to preeclampsia and because I didn’t dilate more than 4cm. When I was taken back to my room I remember feeling that extreme internal cold episode that made me convulse. I remember them covering me with warm blankets and injecting me with anti-convulsion meds. I believe this was my first cryoglobulinemia episode.  After this I constantly had intense muscular pain and generalized inflammation.

When my son was 2 y/o he had the mumps and, even though I had already had a mild case of it as a child, I had them again. They were so severe that I developed viral encephalitis. I spent several days in the hospital in critical condition. The headaches were severe. After a few days the doctor released me but I was to observe full bed-rest for a month in my home. Also he forbade me from exposing myself to sunlight which is about impossible when you live in a tropical island. I continued to have intense generalized inflammatory pain for which I received prescriptions that I don’t remember at this time.
About a year later I was studying respiratory therapy. We were mandated to vaccinate against the swine flu (swine vaccination.) I developed viral encephalitis for the second time as a result of this vaccination. As
a result of the encephalitis I developed small seizures disorder.
In 1980 I became pregnant with my 2nd child. Very high risk pregnancy. I had constant contractions for which I was bed-ridden for the rest of it. My daughter was born 8 months later. Because of all of my medical issues/conditions I received very little spinal anesthesia for this C-section. When the doctor began the procedure I felt absolutely EVERYTHING as if I didn’t have any anesthesia. So they hurried the process up to prevent my baby or I from any further complications and in doing so they left a gauze inside me. So I went through C-section and sutures practically with no anesthesia. I went into a semi-unconscious state when they finally injected me with pain medication. I spent the next 5 days with a hemorrhage until my uterus eliminated the gauze on its own. I was released in the morning and by that evening I was back in the hospital. I received blood transfusions. I spent 2 weeks battling between life  death. They administered folic acid, B-12 shots and other meds I don’t remember. I finally made it back home (very anemic) to take care of my son and newborn baby girl by myself. My anemia continued for several months.
At this time is when I start having constant and severe daily muscle spasms and I had knots everywhere. At that time I was diagnosed with fibromyositis. Later another doctor diagnosed it to be fibromyalgia because of the constant muscle paralysis I was having. One of them happened as I was driving. It was awful. It’s a miracle I’m still alive!!
Two years later I arrived at my work (I was a pulmonary therapist) with fever and a rash all over my body that looked like the measles along with inflammation in all my joints and the infamous “butterfly” rash on my face. The doctors that worked in the office ordered some analysis and I ended up back inpatient at the hospital. I was seen by about 10 specialists. They all agreed in the Lupus diagnosis (systemic lupus erythematosus). I was also displaying symptoms of Raynaud’s phenomenon. I was also diagnosed withsplenomegaly. My lab tests will vary from one hour to the next and ANA test were always negative. A doctor from the VA hosp. specialized in rare and contagious diseases came to see me. Her comments were that I presented a typical picture of person’s with connective tissue disorders (collagen) with systemic lupus erythematosus even though the ANA were negative (false negative). I spent 14 days in the hospital and when I was released they also gave me a final “rare virus” diagnosis. I had no clue who to believe or trust. I had referrals to see so many different specialists like
endocrinologists, rheumatologists, hematologists, etc. My first positive ANA test was while under the care of a rheumatologist. She said it was very low (1:10) but she said that could be due to a simple arthritis. When I feel okay the ANA test tends to be positive but when I am going thru a crisis with fever and severe pain it is negative. Afterwards the hematologists performed a bone marrow test (without anesthesia of course). My bones were so soft and brittle that the needle just went through. The doctor said they were so soft they felt like rubbery. They couldn’t explain why either. At the end they were unable to extract any blood from this procedure.

Later an endocrinologist suspected that I might have a pheochromocytoma (a tumor of the adrenal glands). Ultimately each specialist had his/her own opinion or suspicion. They all agreed mine was a rare case and that I needed follow up. They also agreed on giving me a diagnosis of “connective tissue disease” as well as the fibromyalgia and fibrocystic disease. A year and a half later I had another surgery to remove several gallbladder stones. Based on the doctors opinion they must have been there for at least 15 years because of the size and appearance. I was well for about 1 ½ years where I worked as head of respiratory therapy department at a local
hospital. But I also had yet another emergency surgery to remove a burst ovary cyst that provoked a peritonitis attack. After this I developed UTI’s that went on for a while. Went back to doctor only to find out that during last surgery they had lacerated my urethra and I have contracted the E coli bacteria thus giving me a severe infection. They tried an endless number of antibiotics but the strand was very resistant. I started using natural/alternative medicine and it got better but due to my rigorous work schedule the infection took a new twist. It acquired a new bacterial flora that rendered me inpatient again. I was administered high doses garamycin intravenously. I got over my infection but 2 weeks later I started to present episodes of angioedema as a reaction to some food and chemicals. I had to stop working and because of these episodes I went down to 85 lbs. (I am 5’ 5”) because my body was adversely reacting to almost everything I ate or used. I was treated with Solucortef and Benadryl and once or twice with an epinephrine shot. My life was very difficult as I couldn’t really eat or even step out of the house for fear of a severe reaction to something.

I went to a doctor that was a researcher for Roche pharmaceuticals. He used a device to examine electromagnetic fields of the body. The device would project an image to a computer and based on a set of scales he would measure, interpret and try to level them out by providing electric/energy impulses. He ended up referring me to an allergist immunologist specialist in candidiasis. This allergist did in fact confirm that I had a candidiasis hypersensitivity or systematic candida in addition to the hypoglycemia that I already suspected since I was a child and the connective tissue disease. He only allowed me to eat 2 types of food at a time for a few months and some organic vitamins so that way we would knowwithout a doubt what was it exactly I was allergic to. Took me 8 years to increase my weight back to 115 lbs. (As a side note I would like to express that during this time I went to live on a mountain and integrated natural, organic, holistic remedies to help my body heal.) Also, I used to tell him that every time I went to ER with my allergic episodes it became a domino effect. The allergy produced vasculitis which in turn produced a hypoglycemic attack which in turned made me sweat profusely and feel that horrid coldness that I now know to be the cryo. I did have a test called Coombs test warm and cold which
produced a positive result. Unfortunately most of the doctors at the ER at the hospital I went were general practice doctors and student doctors. Nobody knew anything about cryo and all they would write in my record was that I came in with a panic attack, hypoglycemic attack and low blood pressure.

Unfortunately when I moved to the US so did this incorrect diagnosis of panic attacks. During these years I also had 2 car accidents. In one I broke my right leg knee joint. During 1995-96 I had another crisis with continuous diarrhea that landed me back in the hospital for a full month. All tests came back negative except for a tropical sprue (also known as “environmental enteropathy”, a malabsorption disease commonly found in the tropical regions.) They told me I had to eliminate 99% of what I was eating or drinking. That I had developed hypovolemia (hypovolemia occurs when the body has lost too much blood or body fluid to support normal circulation and body functions.) That if my system didn’t change I only had a few weeks to live. My daughter was 15 by then and I didn’t want to leave her orphaned. I went back home with IV. I only ate wholesome foods like locally grown
produce and vegetables (organic) and little by little introduced small amounts of locally raised chicken without hormones. I lived like this for 8months (IV included). A naturopathic doctor recommended Essiac tea and I had that along with organic vitamins. I started to get well gain and went up to 110 lbs.
I moved to the US to try to provide a better life for my children and better medical attention for me. I decided to file for disability and the 1rst doctor I saw sent me for a full evaluation. With this I get full set of X-rays of my back/spine. They revealed deviation in C4,C5,C6, compacted sacral nerves, fractured coccyx and herniated lumbar 5 as well as bone degeneration and osteoporosis. I was also sent to a neurologist that diagnosed me with myoclonic seizures. A gastroenterologist saw me as well who diagnosed me with celiac disease, the rheumatologist said I have mixed collagen vascular disease in addition to the fibromyalgia. The cardiologist found a mitral valve murmur. The pneumologist diagnosed me with COPD even though I no longer suffer from asthma my breathing is always labored. The hematologist diagnosed me with pernicious anemia in addition to another type of anemia I do not recall and want to do another bone marrow test (which I REFUSE.) The neurologist diagnosed cryoglobulinemia.

Another neurologist performed a conduction test and found peripheral neuropathy in addition to an accident that produced permanent damage to my foot. So needless to say I was approved and receive permanent disability benefits. In the last 5 years I have had two transient ischemic attacks (TIA). Due to my cryo and vasculitis my legs/extremities receive poor circulation, you add the peripheral neuropathy and it became a wheel chair sentence. I am still using a wheeled walker but it is very difficult and hard to do so. I end up with my legs severely hurting andbruises on lower legs and feet. The only reason I am not using my wheelchair is because I don’t have a way of taking it anywhere. To top it up all I just lost my only companion, my assistant dog Valentina. I do live alone. I prefer to keep my independence for as long as possible.

My dear friends, I know that many of you have gone through things like these and possibly even worse. I can only imagine all the suffering. Add to this society’s discrimination and even our own family’s lack of empathy due to lack of knowledge or simply because they get fed up with so many medical issues, to the point where we get called hypochondriacs or a mental case. Also the fact that most doctors don’t have the knowledge or even the desire to deal with our rare medical issues and our lives get all messed up, worse than necessary. It’s a constant fight for survival and even the most basic needs of human existence.

Thanks to these type of organizations that allows us to come together and share knowledge and support is the only reason I am able to keep my sanity and self-respect. I sincerely thank all the people who support us without judging and not expecting much in return except an honest friendship. To the people who are willing to keep an open mind and are able to seek information to help out. I am grateful for these internet pages as well as the organizations that donate handicap minivans for people who are wheelchair bound. And thank you to those who have been so patient as to hear my very long life story, a warm embrace to all of you!!!
Elba Gigante

Because I am Rare



Glen Gardner

James’ Story

One Aussie’s Journey with Cryo


Pam Witzemann