“Stay Warm!” But Doc It’s Really Cold In Here!

keep warm!

I sit shivering and waiting in my doctor’s office, with my myaligia, my nagging joint pain, and the unexplained sciatica that’s been plaguing me for months. I’m waiting on the results of yet, more blood tests and hoping they will result in some relief. I remember how I waited for twenty years for the diagnosis of hepatitis c to explain the weight of fatigue I carried for decades. I can’t forget the trauma of going from doctor to doctor and being labeled as “it’s all in her head” and then, when they discovered my virus the added trauma of being made to feel that I might drop dead at any moment. That fear pushing me into a hurried choice for treatment with interferon that left me with nothing but depression. Depression that led me to be prescribed more drugs that caused horrible side-effects, misdiagnosed as new disease, for which I was prescribed more medication, to the point of becoming over-medicated. At this moment in time, as I wait for my doctor and test results, I am still hoping to find some help. “I have a new doctor now and a new proactive attitude. This time will be different.” With this thought I bolster myself as I shiver, ache, and wait.

Finally, I hear the knock that breaks my stay. My doctor enters the room and after a polite exchange, gets down to business. My liver enzymes are elevated a bit higher than the low titer elevation they’ve rested at for years and there’s something new. I now test positive for Cryoglobulinemia. “Cryo…glob…what?” I ask. “Cryoglobulinemia. It’s sometimes, associated with hepatitis c infections. It causes the blood to jell when it becomes too cold and it can affect every system in the body. It can result in death by causing the kidney’s to fail” my doctor explains. “So…is that why I have so much pain?” I ask hoping for an explanation that brings me relief. “I don’t know. I can offer you some medications to treat your symptoms but I don’t know if your Cryoglobulinemia is making you feel bad. We could try to treat your hepatitis and see if the cryoglobulins clear but you are a non-responder and your liver biopsy doesn’t indicate the necessity of trying treatment again. In the meantime, stay warm! You might consider moving to Hawaii.” Then he offers me Gabapentin or some antidepressants, which I’ve already tried and no longer wanting to be a guinea pig, I refuse them. He asks me to come back in three months and leaves the room. I sit, shivering, feeling confused and hopeless. Cryo…globu…le…nemia, I memorize the word as I rise to leave with the thought, “It’s cold in here! I guess I need to get warm. Move to Hawaii?”

This is how Cryoglobulinemia became a governor in my life though I now, believe I’d suffered with it for years before this moment. This day of diagnosis is just another milestone in living with a disease long before it is discovered by science and then living on the cutting edge of their further discovery. Cryoglobulinemia has redefined warm and has made staying very warm vital to my wellbeing. The thermometer and thermostat control my every breathing moment and living with Cryoglobulinemia has changed every aspect of my life. Over a decade later, I still shiver and hurt in doctor’s offices, the lab, and sometimes, the hospital with no real answers and very little compassion for my condition other than a momentary look of pity and the now overly familiar, light-hearted advisement, “Stay warm!” I wonder if any of them have ever thought what staying warm means to me or the consequences I suffer when I can’t…like when I have to visit my doctor and the thermostat is set somewhere, between 55 and 60 degrees Fahrenheit? Or when I have to visit even colder labs to have blood drawn and then endure multiple pokes because my Cryoglobulemic blood thickens in such a cold environment. No one has ever asked me how many days it takes me to recover from these visits. I add this to decades of spending money for no real help, with little compassion and I arrive at my cynical conclusion. I don’t want a doctor to melt in a puddle of tears because of his or her empathy for me and my plight but I do want a doctor with enough compassion to go the extra mile to help me rather than take my money and leave me to fend for myself. Anything that I’ve learned in the last decade plus that has helped me stay alive and lessen my suffering has come from fellow cryoglobulinemics that I’ve connected with online and from medical articles that I’ve studied and read for myself. In the meantime, I know I’ve spent enough money on doctors to have put at least, two doctor’s children through college and I’m quite sure some of my dollars paid for the new water feature at my local hospital. I have suffered a lot of medical trauma and yes, I’m very cynical about the health care system.

Yet, I know there are good doctors out there. I do have a doctor now, who cares enough to try to treat me and though I want more from him, I understand his point of view. I know treating a rare disease that he’s never seen and probably, won’t see again is unnerving. I know he’s close to retirement and I’m thankful he agrees to treat me at all. I know a few others in this alliance who’ve found the right doctor and the right help and that keeps me going. They keep me reaching for help. They keep me from giving up. Here I find validation and information that keeps me fighting the good fight, in hopes of overcoming my very, rare, autoimmune disease. Cryoglobulinemia is one small piece of a large autoimmune host of sufferers whose suffering must be addressed. Like a “Who” in “Who-Ville” I’m hoping to find Jo Jo and get him to put down that yo yo! Then lend us that last, small voice, to form the big WHOP that breaks the invisible, suffering sound-barrier so finally, the right person will hear! It’s time to address the problem of autoimmune disease and Cryoglobulinemia. There is so much more to it than just staying warm.

 

Cryo and Arthritis

Cryo & arthritus

Cryoglobulinemia can cause arthralgia (arthritis-like symptoms), less frequently cryoglobulinemia can cause arthritis which is difficult to distinguish from rheumatoid arthritis This includes the erosive form of rheumatoid arthritis. Just like rheumatoid arthritis, the arthritis caused by cryoglobulinemia requires that rheumatoid factor be present. If you have type II or type III cryoglobulinemia , you are positive for RF, guaranteed… This kind of arthritis differs from the simple arthralgia that some people with cryo experience in that it is always symmetrical (both left and right side joints affected), commonly worse in the morning, and will improve , as the day progresses allowing stiff, sore joints to loosen up a bit. In general terms arthralgia involves joint pain, but not inflammation of the joints. Rheumatoid arthritis involves both pain and inflammation in the joints. Lastly, some people with cryo actually have rheumatoid arthritis AND cryo at the same time! Either way, if you have the arthritis, you can have joint inflammation and a risk for joint damage. You need to talk to your doctor about it. Sometimes milder cases of RA can be treated with aspirin or NSAIDs such as advil or naproxen sodium. In general, forcing the cryo back into remission with steroids or immunosuppressants will also force the arthritis to remit…. but once the joints are damaged, the damage is done and there is no remission from that.

Just remember, that joint pain without swelling, is not likely a significant amount of inflammation. If you are having trouble with RA, then you will most likely have pain, stiffness AND swelling from the inflammation. I have had my ankles and feet affected so badly that I could not get my shoes on. Same deal with my knees, but I don’t put shoes on my knees… tongue emoticon It is always symmetrical, that means that if one knee is hurting, swollen and inflamed, the other knee will be much the same. As far as hands and fingers go, I have problems there too, only one clue that it is RA is that the very last joint toward the end of your fingers is never affected. Basically the symptoms of arthritis caused by cryoglobulinemia are identical to those caused by rheumatoid arthritis.. so I guess we call call it “RA”, even though we might not have RA at all… but then there are some of us who do!

Cryoglobulinemia is my life but Not my Identity

Rare Disease Day 2016.

Cryoglobulinemia: How the body loses Heat

Cold Soaked: Marianne

Marianne.Vennitti.cold.soaked

Cryo and me. Cold Soaked!  

By: Marianne Vennitti

This is especially for our newbies and also to share a bit about Cryo and how I flare. This is me, in my bathroom, sitting under a special lamp that immediately warms up the room.  I was fortunate to find an electrician than took an interest in me and Cryo. The electrician found this lamp – it is not the normal heat lamp found in bathrooms. As you can see, I am wrapped in 2 blankets.  In my hands is a hot bean bag and I also have one underneath my blanket. There also is a hot bean bag on my feet.This flare occured because I was out working in my yard, enjoying having energy and the nice weather. As the day went on the sun was less intense and the temperature dropped . . .When I say dropped I’m talking about 65-69 fahrenheit.   I didn’t really pay attention since I was so excited to be enjoying the outdoors. The problem got worse because I was washing down one of my patios and the hose had a leak.  I was walking in the water although I had on sneakers. Between the slow drop in temperature, the hose leak and the water under my feet, all of a sudden my body gave me the signal that I had to get in the house real quick. I ran past my husband and said, I have to get in a hot shower NOW.

I noticed that my hands and feet were white while I was in the shower, not like Raynauds – white.   As the warm shower water hit my hands and feet it felt like a was being attacked by sharp objects, not pins but something bigger. I immediately got out of the shower, wrapped a towel around me and headed for my heated bath, as you see me in this picture. I yelled for my husband, Chris to come. When he saw me on the floor he knew just what to do. He grabbed all my garb and there I sat for at least 30 minutes. This is what me and my friends call “Cold Soaked.”

I have been “Cold Soaked” several times.  What I find amazing is how I have learned to listen to my body and know what is happening. I can’t tell you exactly what the signals were but I know that I immediately felt frozen and my head felt woozy.  I also suffer from mini strokes and possible seizures therefore I have to be especially careful. It took about 2 days to get the numbness out of my toes and fingers.  But something unusual happened this time! I was laying in bed about 5 hours later, I felt a strange sensation going through my entire body: it felt like I was completely defrosting.   Sounds crazy right? Almost like science fiction but it really did happen, no kidding. It was so noticeable that I sat up in bed and with an OMG look on my face, as Chris waited in anticipation for me to say something, I actually burst into laughter after experiencing something so freaky and at the same time exciting. It’s a great feeling to understand these complicated machines/bodies we walk around with. And I think technology is hard!  Understanding you body can save your life when you are living with Cryo.