In the world of lupus we have this neurological disorder that is called "lupus fog", I prefer to call it a butterfly brain. Lupus mean wolf and the symbol for lupus is the butterfly which are both taken from the shape of the rash across the cheeks and nose also called a malar rash.
Which ever you choose to call it the neurological portion of lupus is the same. You forget things, its like having Alzheimer's some days. You brain plays tricks on you into fleeting thoughts much like a butterfly. You can be in the middle of a conversation and it flutters of into the highest space where you can not go. There are days when its so bad that you can literally forget that you have a cake in the oven and grab that hot pan without a pot holder. Funny instances such as opening a cupboard door and expecting a light to come on is one of my personal happenings, as is the pan.
I am sure you are wondering now why I am all of a sudden focusing my blog on my disease. The answer is simple...AWARENESS! It is a genetic disorder that affects men, women, children and it doesn't discriminate against race either!
We are all fully aware of breast cancer and how to be proactive against it; however there is no way to be proactive against Lupus. Its simply an allergy to ones own body, it sees ones organs as foreign and attacks them. I sit in a room once a month with people who have lived with lupus for many years, a husband whose wife lost her battle with it quickly after not having any "flares" in over ten years, she was taken from us in a matter of weeks; we also have new lupus patients eager for information and hope. Unfortunately the only hope is to stay comfortable, taking the medications, using 100spf sun block that doesn't help and attempting to remain stress free. How does one do that? You can't. How do you give someone hope when you feel none? You paint a smile on and remind them they aren't alone, recommend ways to de-stress, encourage them to take their meds and be their own advocate with the doctors and not take the brush off that we often see.
Another part of the neurological portion of Lupus is seizures. I have been having them since I was born, with my first gran mal seizure before I was even a year old. The details of that story are fuzzy for me today but I remember my mother telling me that I curled into a tight ball and my father tried to pry me flat with his calloused hands and he couldn't. My own mother had seizures after giving birth so back then they just figured it was the same thing. Amazing what nearly 42 years of medicine can uncover. My mother having RA and at one point in time she herself was allergic to the sun; which leads me to wonder if she has RA and Lupus as well. I don't know she won't talk to me.
On this new year day I wish you all the health and happiness for the coming year. My butterfly brain is now spiraling into oblivion and I have lost my train of thought.
Sunday, January 1, 2012
Saturday, December 31, 2011
The Wolf Comes Calling
Nearly two weeks ago I had a kidney biopsy. This was seen as an non-encouraged thing my many fellow lupus members of a certain support group I had belonged to online. They felt that asking for the biopsy with my hematuria (blood in my urine) that it was not justifiable and I was scaring newly diagnosed lupus patients. Were they wrong to underestimate my situation and wrong for kicking me out for speaking my mind about my choices? Maybe, but we all with lupus know sometimes the truth is hard to handle. IT IS scary at first and it gets scarier as you go on with things.
As I think I stated before I have only showed a low positive in my blood work before, only blood in my urine and no protein which these members felt I should have before going into this biopsy. All I can say to them is my Nephrologist ordered it, offered it and believed in what I told him.
Yesterday, I went to see my regular Dr. who I love to the bottom of my heart. He has always believed in me through all of this and tried his best to take care of me through it since nobody else would listen until the the kidney Dr. and the gastrointestinal Dr's did. We have found out now that I have cancerous polyps on my colon; which they removed completely. But now I also have kidney involvement which is normal in lupus patients. Lupus nephritis combined with cancerous polyps and neurological disorder make me only one step away from complete lupus involvement. The only thing left is my heart.
I already have a heart murmur so the Dr's are watching me closely for arrhythmia since my father and other members of my family had congestive heart failure which would be the only non lupus affected organ at this time.
I don't mind saying I cried all the way home, along with being a bit angry at the Dr's who wouldn't listen to me. Instead as my Dr said "you may have very well saved your own life"
The moral to this story is this... be your own advocate, don't settle for what doctors tell you when you know something isn't right. Find one that will listen and treat you with respect. Be your own advocate with the doctors, IT IS YOUR ONLY LIFE! You are human and so are doctors, they make mistakes too, but don't let them confuse you for someone who doesn't care about their own life. TAKE CHARGE!
As I think I stated before I have only showed a low positive in my blood work before, only blood in my urine and no protein which these members felt I should have before going into this biopsy. All I can say to them is my Nephrologist ordered it, offered it and believed in what I told him.
Yesterday, I went to see my regular Dr. who I love to the bottom of my heart. He has always believed in me through all of this and tried his best to take care of me through it since nobody else would listen until the the kidney Dr. and the gastrointestinal Dr's did. We have found out now that I have cancerous polyps on my colon; which they removed completely. But now I also have kidney involvement which is normal in lupus patients. Lupus nephritis combined with cancerous polyps and neurological disorder make me only one step away from complete lupus involvement. The only thing left is my heart.
I already have a heart murmur so the Dr's are watching me closely for arrhythmia since my father and other members of my family had congestive heart failure which would be the only non lupus affected organ at this time.
I don't mind saying I cried all the way home, along with being a bit angry at the Dr's who wouldn't listen to me. Instead as my Dr said "you may have very well saved your own life"
The moral to this story is this... be your own advocate, don't settle for what doctors tell you when you know something isn't right. Find one that will listen and treat you with respect. Be your own advocate with the doctors, IT IS YOUR ONLY LIFE! You are human and so are doctors, they make mistakes too, but don't let them confuse you for someone who doesn't care about their own life. TAKE CHARGE!
Thursday, December 29, 2011
Living Lupus Style
I know I have not written in some time. This is partly due to some very ugly things said about my blog; which I took too personally. I shouldn't care what others negativity brings to me, I should have viewed it as constructive criticism and above all I should have considered the source of the negativity ie: people who aren't well read, undereducated and above all non-writers. I feel like I have failed myself in letting this slip past me to my ego. I refuse to let others define me or what I write any longer. So folks I am back in the saddle and I have a lot to say!
I have been living with SLE (Systemic Lupus Erythematosus AKA: SLE or Lupus) for as long as I can remember. I was only diagnosed a few years ago when I went to the local walk in clinic with a headache, fever, rash, pain in my joints and a multitude of other symptoms. When they did a blood test they did a test called an ANA or Anti-nuclear-Antibody test, they also did a test for Rheumatoid Arthritis. The ANA came back with a low positive and the RA factor was negative. After MANY scans and more blood tests to eliminate the diseases that mimic lupus such as MS, RA and other auto-immune diseases; I was diagnosed by my family doctor of 30 years with SLE.
At the time I was terrified, confused and relieved to finally understand why the sun felt like it was burning me alive when I was in it, why I had this strange rash on my face and chest and why my body just felt like it was falling apart at every joint.
Since that time I have been seen by several Rheumatologists who have been unable to find the lupus in my blood work but have ruled out all the other mimics as well. A rheumatologist is a doctor that specializes in diseases of the joints, muscles and bones according to http://www.hss.edu/rheumatology-rheumatologist.asp#What_is_a_Rheumatologist I was traveling from my home in Northwestern Lower Michigan to the University of Michigan to see and hope to be treated by the rheumatology department there. They ruled out all the mimics of SLE but refused to diagnose me with it. They sent me to a dermatologist to check the rash on my face which was deemed quickly and without a scraping or sample of the rash as rosacea (http://en.wikipedia.org/wiki/Rosacea) when in truth I had a butterfly rash (known as a malar rash) that resembled this picture.
I received no treatment from the U of M except the advice to stay out of the sun and from under anything emitting UVA or UVB rays (so long tanning beds).
I returned to my GP who was the only one willing to help me. He knew my family history of auto-immune diseases, mom has RA, dad was diabetic, my sister and son have cold urticaria (allergy to the cold), my sister has other allergies as well; I have several other family members with RA, allergies, fibromyalgia and other auto-immune diseases. It would not be unexpected for me to have RA but rather I am the only one with Lupus so far in my family.
In the years since the first suggestion my Lupus has begun to affect my kidney's and just over a week ago I had a kidney biopsy. I am hoping to find out the results tomorrow when I see my GP and my hope is that they do find lupus involvement in the biopsy. I know that sounds horrible to wish for but you have to understand, its not showing in my blood any more which happens in 3% of lupus patients; if they don't find it there I would have to have a spinal tap or even a bone marrow biopsy in hopes of finding the eluding lupus diagnosis that will make a rheumatologist pay attention to me and treat me.
I have been on so many medications ranging from anti-malarial drugs to steroids and chemotherapy. I was on the humira shot for a while and it worked but the rheumatologist threw a fit about it and wanted me off it. I have now been off all but my anti-seizure medications, narcotic pain pills and anti-anxiety medications since August of this year. I don't mind saying it has been hell on me.
I now can barely get out of bed on my own, the joints in my feet hurt so bad I cry when I walk. My joints become inflamed and hot to the touch. I spent 5 minutes out side in the cold yesterday and the tips of my fingers were flaming red, hot and hurt/burned, even though I am not supposed to have Raynaud's Phenomenon (http://en.wikipedia.org/wiki/Raynaud%27s_phenomenon) according to the very rude rheumatologist I have seen recently and locally. He basically told me every thing I go through is in my head and that there is nothing wrong with me. When I started to question him about the 3% of lupus patients he got mad and told me to let my GP treat me and walked out of the room.
At this point I will have to sign off for a bit as my fingers are not co-operating with my brain and the lupus fog is threatening at the door. I will go into more detail about the fog in another post. For now, Happy New Year and I hope you all have a wonderful, safe time while celebrating. 2012 I hope brings great things for everyone, including my health and my team of doctors to help me be more capable of doing the things I enjoy, like writing on my blog.
Until next time....peace, love, less pain and more spoons to you all, especially my Lupus brothers and sisters.
I have been living with SLE (Systemic Lupus Erythematosus AKA: SLE or Lupus) for as long as I can remember. I was only diagnosed a few years ago when I went to the local walk in clinic with a headache, fever, rash, pain in my joints and a multitude of other symptoms. When they did a blood test they did a test called an ANA or Anti-nuclear-Antibody test, they also did a test for Rheumatoid Arthritis. The ANA came back with a low positive and the RA factor was negative. After MANY scans and more blood tests to eliminate the diseases that mimic lupus such as MS, RA and other auto-immune diseases; I was diagnosed by my family doctor of 30 years with SLE.
At the time I was terrified, confused and relieved to finally understand why the sun felt like it was burning me alive when I was in it, why I had this strange rash on my face and chest and why my body just felt like it was falling apart at every joint.
Since that time I have been seen by several Rheumatologists who have been unable to find the lupus in my blood work but have ruled out all the other mimics as well. A rheumatologist is a doctor that specializes in diseases of the joints, muscles and bones according to http://www.hss.edu/rheumatology-rheumatologist.asp#What_is_a_Rheumatologist I was traveling from my home in Northwestern Lower Michigan to the University of Michigan to see and hope to be treated by the rheumatology department there. They ruled out all the mimics of SLE but refused to diagnose me with it. They sent me to a dermatologist to check the rash on my face which was deemed quickly and without a scraping or sample of the rash as rosacea (http://en.wikipedia.org/wiki/Rosacea) when in truth I had a butterfly rash (known as a malar rash) that resembled this picture.
I received no treatment from the U of M except the advice to stay out of the sun and from under anything emitting UVA or UVB rays (so long tanning beds).
I returned to my GP who was the only one willing to help me. He knew my family history of auto-immune diseases, mom has RA, dad was diabetic, my sister and son have cold urticaria (allergy to the cold), my sister has other allergies as well; I have several other family members with RA, allergies, fibromyalgia and other auto-immune diseases. It would not be unexpected for me to have RA but rather I am the only one with Lupus so far in my family.
In the years since the first suggestion my Lupus has begun to affect my kidney's and just over a week ago I had a kidney biopsy. I am hoping to find out the results tomorrow when I see my GP and my hope is that they do find lupus involvement in the biopsy. I know that sounds horrible to wish for but you have to understand, its not showing in my blood any more which happens in 3% of lupus patients; if they don't find it there I would have to have a spinal tap or even a bone marrow biopsy in hopes of finding the eluding lupus diagnosis that will make a rheumatologist pay attention to me and treat me.
I have been on so many medications ranging from anti-malarial drugs to steroids and chemotherapy. I was on the humira shot for a while and it worked but the rheumatologist threw a fit about it and wanted me off it. I have now been off all but my anti-seizure medications, narcotic pain pills and anti-anxiety medications since August of this year. I don't mind saying it has been hell on me.
I now can barely get out of bed on my own, the joints in my feet hurt so bad I cry when I walk. My joints become inflamed and hot to the touch. I spent 5 minutes out side in the cold yesterday and the tips of my fingers were flaming red, hot and hurt/burned, even though I am not supposed to have Raynaud's Phenomenon (http://en.wikipedia.org/wiki/Raynaud%27s_phenomenon) according to the very rude rheumatologist I have seen recently and locally. He basically told me every thing I go through is in my head and that there is nothing wrong with me. When I started to question him about the 3% of lupus patients he got mad and told me to let my GP treat me and walked out of the room.
At this point I will have to sign off for a bit as my fingers are not co-operating with my brain and the lupus fog is threatening at the door. I will go into more detail about the fog in another post. For now, Happy New Year and I hope you all have a wonderful, safe time while celebrating. 2012 I hope brings great things for everyone, including my health and my team of doctors to help me be more capable of doing the things I enjoy, like writing on my blog.
Until next time....peace, love, less pain and more spoons to you all, especially my Lupus brothers and sisters.
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