Recent Wisdom From My Mom

This space is designated for whatever my mom wants to talk about. Because she is smart. And I think she deserves her own page. Take it away mom!

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Hey All. I wanted to share some helpful resources for Fibro/CFS/Autoimmune Disease Sufferers. My mom is basically the research Queen of the illness. So these are what she finds most helpful. I hope you are having a healthy day. If not, rest rest rest.

xoxo, Mary

cfids.org

http://www.pandoranet.info/

cfsknowledgecenter.org

AboutMECFS.org (my mom highly recommends this one because it has all the latest research and blogs. It’s like an online support group.)

cfsclinic.com (This is my doctor and her website)

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Since Mary has actually designated a spot for my so called wisdom, I thought it might be a good idea to actually write about a few things that could be helpful.
First it is always good to know what you are dealing with when it comes to an illness. That has been perhaps the most frustrating part of this illness that has totally changed my life for the last 24 years and Mary’s for the last 18. I was 34 years old with no medical history with the exception of migraine headaches (2 or three a year) and neck pain from a skiing injury at age 22, when I got what seemed like the flu ie fever, sore throat, swollen lymph glands, bad headache, muscle aches and profound fatigue. When I wasn’t any better in 2 weeks I visited my doctor who ran all of the tests and could find nothing. I started experiencing daily severe headaches along with memory and concentration problems. After a year of these symptoms waxing and waning but never really improving I was given the diagnosis of CFS —a chronic debilitating syndrome for which there was no known cause or cure. I kept up with the little research that was going on and working with my doctor treated each symptom as best we could. One very puzzling and challenging symptom was that every time I tried to exercise I got worse. My usual M O of just mind over matter and pushing through pain no longer worked with this mysterious illness. My attempts to do that just landed me in bed for sometimes 2 weeks. My life had a new normal which was extremely hard to adjust to as a wife and mother of 4 young children. I did the best I could always hoping and praying that science would find out what this was and learn how to treat it.
Mary, on the other hand was 9 years old when she also contracted a flu like illness that never went away. As I watched this flu linger and pediatricians not come up with any explanation i knew the all too familiar symptoms and was devastated that my child would now have to deal with the disabilities of this illness.

That was 1994 and this is 2011 and we have learned a lot more about what this is or isn’t. We found a specialist, Dr. Nancy Klimas who is a professor of immunology and who has been researching this illness for the past 20 years. Her research and knowledge of this illness has at least given us some understanding of what we have been dealing with. After extensive interviews, tilt table tests, exercise physiology tests and over 50 blood tests this is what we know about what this illness is doing to our bodies.

Dr. Klimas believes it is either a virus that we contracted that much like HIV is damaging our immune systems or an autoimmune disease set off by our bodies fighting off the flu like virus we contracted and now attacking our own tissues (mostly neurological tissues). Our test results demonstrated very similar immune system profiles as follows.

Mary has:
Only 10% of the natural killer cells she should have
Of that 10% less that 10% are functional. This can allow other infections to develop and persist

Her immune system, measured by something called cytokines is ratcheted up 10 times the normal which means it either is fighting an organism or thinks it is. Cytokines are proteins that are expressed by the immune system when we have the flu and they are responsible for the painful muscles, fever. sore throat and profound fatigue we experience when we are sick. That’s why she feels so bad all the time

She also has Lyme disease which is not believed to be the cause of this illness but rather an opportunistic infection due to a weakened immune system…lack of natural killer cells… which causes more pain and fatigue

She has autonomic nervous system dysregulation which causes a heart condition called postural orthostatic tachycardia syndrome (POTS for short) basically whenever she stands up her body is unable to maintain her blood pressure and it drops dramatically causing her heart to race among other things.

She also has low blood volume due to the autonomic nervous system dysregulation and her adrenal glands have stopped producing the Adreno Cortico Steroids and has brain inflammation which is why she gets the terrible headaches

The exercise physiologist found that she can only exercise for 3 minutes before her body switches from an aerobic (oxygen using) metabolism to an anaerobic metabolism which starts to use Co2 and causes muscle breakdown and many more negative effects to the muscles which is why she feels so bad the day after any exercise of longer than 3 minutes.

These are the things we found in the last 6 months and although there have been some treatments and medicines 25/day that have helped she still experiences horrible muscle pain almost constantly, g migraine headaches, and an exhaustion just like you’ve run a marathon and then gotten the flu. I can identify with all of these symptoms because I experience them all as well. What happens is you become more and more isolated from friends and family because the effort it takes to be in a relationship is most of the time just too great and when you do try to be normal and experience normal fun day with friends you may end up in bed for a week. You end up always being on the taking side of the relationship because you have nothing left to give. It’s a very sad statement but true and there are thousands like us.

There is good news on the research front and I will go into that next time. Until then here is my wisdom for the day.

The universe will provide whatever experience is necessary for your spiritual growth. When you can embrace the lesson the experience changes.

52 thoughts on “Recent Wisdom From My Mom

  1. Hi Mary & Mary’s Mom,
    I relate to both your situations very closely. I have a very rare autoimmune disease called dermatomyositis, where my muscles and skin attack each other. I am fortunate becasue I have responded eventually to treatment but understand too well the feelings of social isolation and the struggle trying to have proper friendships. Community is built on reciprocity in so many subtle and unspoken ways and when you can’t contribute, you do become a fringe dweller. It’s more than just a state of mind. I smiled when I read you had POTS because I’ve been following a lovely blog called Lethargic Smiles written by a girl about your age and she’s such a crusader. Really lovely girl. Perhaps you already read her blog. If you check my blog out, I recently went skiing with the disabled winter sports association. I was able to ski normally but for shorter times but they also do sit skiing.While being able to ski was a miracle for me, I am also conscious that the chemo treatment I had has left me with severe short term memory issues so before I go ringing the brass, bell, I’m still struggling with that. I don’t want to put that story out there as though I am fixed when I still have major shortcomings. I am also conscious that I could do this because I have treatment. A close friend has ALS and there is no long term really effective treatment so I am very conscious of the importance of medical research not just to find ultimate cures but also the better treatments they will hopefully find along the way. I look forward to reading more of your blog xx Rowena

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  2. I just found this blog and in my complete excitement have, what probably looks like to you and your daughter, spam commented all over you. Sorry, I am so thrilled to have found a voice that so reflects my own journey and attitude towards this nasty, rotten invader in my house. We are learning to co-exist but the bastard still steals the covers when I’m not looking. So, I will never get a handle on how to completely like him but at least I don’t have the same anger that makes me rant and rave whenever he takes over my space. Thank you so very much for sharing your journey.

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  3. Guys, I really hope this doesnt sound like crank stuff, but I have recently been introduced to a system for combatting allergies (and immune system problems are like the mother of all allergies) and it is really revolutionary. It has curred my wide – lifelong suffferer from hellish hay fever – and my daughter – 1000% more allergic to egg than ordinary people, a tiny drop would kill her – allergy now gone.

    If you would like more information, please contact me. I lnow of someone in America os does this stuff. I should say I am the most skeptical, science based guy I know. But this system has blown my tiny mind.

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  4. What 2 awesome wonderful people you both are. Your strength and knowledge make me get goose bumps of pride. God has a plan for you which I hope he reveals soon. I’m sure you are tired of waiting for the answer. But I know it will be grand and all of your pain you have suffer thus far will have not been in vain. You will be rewarded for your suffering. Hang in there ladies. I love you so much and am inspired by you both DAILY. You are my heros!!!!! Amy O.

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  5. Just wanted to thank everyone for your comments, and say to everyone: Hang in there. We’ll get there.

    I hope this can be a place for us all to feel better. Or normal. Or awesome. Thanks again to everyone for your words and for sharing.

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  6. Mary is very lucky to have you, Mary’s mom! I am very fortunate also to have two parents help me out. I am sure that having their 31 year old daughter at home, supporting her for the last 3 years was something they never imaged they’d have to do, but they do it, and they don’t complain at all. I am very gratefule and don’t know what I’d do without them, and I’m sure Mary feels the same way about you.

    Interestingly, my mother also had CFS, though hers lasted for 3 years compared with my 13 (I also have fibro, which she doesn’t, but she does have arthritis). I can’t help but wonder if there is a hereditary factor.

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  7. I will reiterate again to get vit. b12 shots at Drs. for fibro, take huge amounts of good vit. d, take zinc to repel infections, eat a Gluten-free diet please, it really takes care of the IBS cuz tummys so sensitive. vit. c also as well as a multi. Take a liquid of pills are hard for you to swallow. Eat as much organic food as possible, lots of fresh fruits, veggies, protein from beans, quinoa, etc. socially its a bitch but you can manage your life by treating one symptom at a time. Also marijuana is aces to repel the fibro pain, works better than any painkiller. Try it, it works, if it didnt I wouldnt be able to manage my fibro after 14 years, gluten probs have been proven to be associated with Fibromyalgia, check into it, really works, is a pain to follow but worth it. Im 60 & know my stuff was in health care before I became Fibro woman! Sleeps elusive, try small naps if at all possible. Lots of luck, follow my tips & they will help you. will take a few weeks to notice a difference but it is surely worth it. Peace, Roz.

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  8. Hi Mary, I can’t recommend highly enough that you and your Mom check out:

    1. Dr. R. Paul St. Amand’s book, What Your Doctor May Not Tell You About Fibromyalgia. The Dr. is an 83-yo endocrinologist in Marina Del Rey, CA – he and his children have fibro, and they have successfully reversed their symptoms with his treatment protocol.

    2. http://community.lsoft.com/SCRIPTS/WA-LSOFTDONATIONS.EXE?A0=GUAIGROUP&X=34B87E368B0A540522&Y=dlovejoy%40sbcglobal.net and check out people’s stories. Search for “progress report” – you’ll see so many lives completely changed, people living fully with NO symptoms.

    My own life was getting worse and worse – cyclic, chronic fatigue since 23 (I’m 39), IBS, flu aches and fatigue, psoriasis symptoms, headaches, depression, 8 miscarriages in a row, extremely low B.P. and progesterone…then another big CRASH in January 2011. –Until I was referred to Dr. R. Paul St. Amand by a hematologist. I’m 6 months in to Dr. St. Amand’s guaifenesin protocol, and my life is turning around, for good. Sooo many improvements. The treatment can be a hard process, but the payoff is immeasurable. I find it LESS hard than suffering needlessly with this illness!

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  9. well I stumbled across this the way most of you did, the white girls thing. To Mary and your mom, I have been sick now for a little over a year now and recently diagnosed with Rheumatoid Arthritis but trust me this disease is not like the arthritis that you might think of. This is also autoimmune and when I say sick I mean can’t get out of bed and pain in almost every joint from my jaw to my feet. Treatment consists of pills(lots) and infusions of Biologic medications similar to chemotherapy. Just 2 weeks ago I got a bonus diagnosis of Sjogren’s Syndrome, another autoimmune disease. To Mary’s mom, I understand the feeling of wanting to take the pain so Mary wouldn’t have to, I have 3 sons almost all grown. I am so thankful that my boys are free from this type of disease. I am 52 years old and it breaks my heart to read about young people getting this ill, my only hope is that a cure will be found in your lifetime. I see a Rheumatologist for treatment and there will be many other Drs. in my future. I wanted to give you both my support, hang in there, there will be ups and downs I am just coming out of a down and am finally trying to learn to accept what has happened to my health, trying to be positive, as they say in my RA sites ((((gentle hugs)))).

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  10. I have a thought. Where I’m from the state has a medical marijuana law. Have you guys ever considered it for the chronic pain and migrane? I know a few people with fibro. They subsitute the m.m for the strong pharmicutical painkillers. Plus subsituting something organic for something made up of chemicals is always a nice thought :)

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  11. Your daughter is right, you are a very intelligent woman.
    She is blessed to have you, and its good to see, that both of you share this blog.

    The insight you have in this decease is amazing, you bacame you and your daughters doctor, I can only say, that I am very impressed, its completely breath taking, that you know so much.

    I am sorry for my bad choise in words, or gramma flaws, Im from Denmark, so the word barrier might be in trouble sometimes. But I do look forward to reading new post from both of you guys, and a lot of blessings, and hope here from me in Denmark, Im crossing my fingers, for a final cure for this.

    Mia

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  12. Please check into a practitioner in your area for this system. It’s a whole body system that addresses everything from the cellular level up. May be worth a look into:

    http://www.bodytalksystem.com/

    Here’s the description from their webpage:
    “BodyTalk is an astonishingly simple and effective holistic therapy that allows the body’s energy systems to be re-synchronized so they can operate as nature intended. Each system, cell, and atom is in constant communication with each other at all times. Through exposure to the stresses of day-to-day life, however, these lines of communication can become compromised or disconnected, which then leads to a decline in physical, emotional and/or mental well-being. Reconnecting these lines of communication enables the body’s internal mechanisms to function at optimal levels, thus repairing and preventing disease while rapidly accelerating the healing process. In this way, BodyTalk stimulates the body’s innate ability to balance and heal itself on all levels.”

    “BodyTalk can be used as a stand alone system to treat many chronic and acute health problems, or can be seamlessly integrated with any healthcare regimen to increase its overall effectiveness. BodyTalk’s major assets are its simplicity, safety and the speed of results.”

    Many blessings to you both!

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  13. You remind me so much of my mother and me. She is the research queen and has suffered with fibromyalgia for more than 10 years. Over my short 33 years, I’ve been dianosed with epilepsy, lyme disease, chronic fatigue syndrome and now fibromyalgia. Of all those things, the fibromyalgia has been the worse, causing ridiculous pain. I know understand the pain my mother has suffered with.
    I’ve had an extremely difficult time with work, due to concentration issues(epilepsy) and exhaustion(chronic fatigue) I look perfectly normal, so I’m billed as lazy. I could usually do one physical activity like clean the house(can’t anymore) and I’d be too exhausted to take care of anything else. Now I have two kids, 3 and 6 and I love dearly but get so worn out taking care of.
    I understand what you mean about not going out with friends. I’ve always had difficulty maintaining relationships because I get so drained. But in the past two years, I’ve had the most amazing and supportive friends who may not totally understand what I’m going through, but they love me anyway, quirkiness and all :)

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  14. Hello there. I just happened to stumble upon your daughters blog while reading some things online tonight totally unrelated to what you and your daughter are going through. I just felt the need, after reading this heartfelt but devastating entry that I think it amazing how strong you both are. I can’t believe what you have been through and what you go through on a day to day basis. And on top of everything, to share your story and help try to educate others….. It’s simply incredible. I am wishing that you both can continue to stay strong and positive. My thoughts and prayers are with you.
    Sincerest regards,
    Casey

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