autoimmunity

Hello from San Diego

2008-08-25T06:14:00Z

Hi All,

My name is Carol, and I'm a suvivor of a white blood cell cancer (Non-Hodgkin Lymphoma) which was diagnosed six years ago. Before diagnosis, I was healthy with a history of one head cold per year pretty much. Since diagnosis and intense chemotherapy, monoclonal antibodies and steroids, I have gotten worse and worse health-wise. I've gotten Bels Palsy, kidney failure, diabetes, severe arthritis, fibromyalgia, bleeding ulcers, polyps (benign), etc., etc. I am in remission, and anticipate no relapse; however, I am disabled to the point where I cannot hold down a job. I'm a mess!

I feel very strongly that the cancer and the treatments are responsible for my immune system being shot to hell over the last six years. Has anyone had similar experiences? Who knows if there is truly a connection, but the chronic diseases keep piling up. There's got to be some correlation, no?

Anyway, I'm glad to be part of the group. Less pain and more joy is wished for you all.

Ciao & Shalom, Carol

Autoimmunity and life

2008-04-29T14:51:00Z

I noticed on one of the previous blog posts that there are a couple of comments from people who were sharing their diagnosis and wanting to connect with others. With that in mind, let's start a blog round robin to post about how autoimmunity affects us. I'll add instructions on how to do that at the bottom of the post.

Autoimmunity affects every part of my life. The autoimmune clotting disorder (APS) I have has caused several strokes; I have difficulty walking and staying upright, weakness and disfunction on my left side, fatigue and short term memory loss. The connective tissue disease I have causes joint pain,fatigue and a host of other things we don't talk about, yet. I lose words here and there and still have transient ischemic attacks, but those are rarer and rarer. I think the biggest obstacle I have is fatigue, which I get from two different sources. Luuuuuuuuucky!

With all of that said, I don't think my life is completely subverted by autoimmunity. I still work, see friends, read, etc. I am limited in the ways I go about things and the inability to do riskier things (like travel) by myself. My life is full and enjoyable, even though I do miss certain things about life before the autoimmune explosion. Even though autoimmunity is present in everything I do it has not taken over my life; I think that's the difference I was trying to get to: it's a part of my life but not the totality of it. I realize that I'm lucky in that I am still able to work and live with purpose and sovereignty. I don't look forward to the day when that is no longer true. It's coming, but I am content to assume it is years away. It better be!

Next!

To post a blog post if you are in the group (everyone is welcome):

Go to "view profile" at the top right of the page.
Click on the "My groups" page.
Click "add blog entry" under Autoimmunity.
Add your entry!

Illness & Natural Medication

2008-04-18T20:17:00Z

I have tried a form of acupressure which helps by stimulating the hormones this in turn releases chemicals into the body which and can boost your energy levels, unfortunately for me it only worked the first 2 times. As most of your hormones are based in the pancreas and I am diabetic (my pancreas don’t work properly) it was not going to work for me, the guy I went to see was very honest and up front. But I can say it did work for me so it was worth having a go. I am trying Homeopathy at the mo that to has made a difference as I was having a lot of irritable gut problems. Pauline who I see is very nice and desperately want to help me improve. The reality of FMS is its never going to go away but it is possible to make if easier to live with. Another help has been a product I take called Ambrotose the website is https://www.mannatech.com/Country.aspx there are a lot of people with all sorts of illnesses have benefited from taking it. The reason I started taking this product is: In August 05 I was diagnosed with Diabetes and although I was treated for this my other symptoms where not happy and I just went down hill by the January of 06 I can only describe as if I was dieing, dramatic maybe but that’s how it felt. I new about this product but not working because of the illness I was put off by the cost. But out of desperation I started taking it and with in a few weeks I felt a difference. I took a few months to make a real difference but I can say it does work.

They say you should give it at least four months to let it get into your system. It works by providing the body with nutrients it needs to heal or help it self. Some people have had great benefits from it, others say it made no difference but it’s worth a try.

mike

Autoimmunity is back!

2008-04-18T19:56:00Z

Our blog is fixed and we're ready for bear. Mike has already added two posts about R.A. and fibromyalgia that are worth a read. I posted this before but it was unreadable, so here it is again:

Hey y'all! welcome to our little corner of Disaboom. We are the unfortunate few who are affected in some way by autoimmune disease. It is estimated that 20% of the population "suffers" from an autoimmune disease. Autoimmune disease is the 4th largest cause of disability in women and autoimmune diseases primarily affect women. We are the segment of the medical community that is often undiagnosed until our diseases are drastically manifested. We also tend to collect them like some people collect travel spoons or beanie babies. They say that if you have one AI disease you are more likely to have another.

Our diseases have the common AI thread but they are as different as we are as human beings. I think this blog would be a good place to share our stories relating to AI diseases. Tell the world what it's like to be the you with an autoimmune disease or diseases. Just a few guidelines:

Please sign your name to your posts. This blog is open to all members and it will be confusing if we don't do that!
No blaming the "victims." This is a personal one for me and I am forcing you all to live by it. There is, as of today, no credible evidence that autoimmune diseases are diseases of affluence. This involves a fundamental misunderstanding of what immunity is and does and it seeks to further an agenda. MY agenda is to not allow it to be furthered here. That's my one and only political proviso.

If you all ever want to do a blog carnival type thing, I can organize that here. Just let me know.

Have fun with this group!

Liesl

Polyarthralgia & Fibromyalgia

2008-04-18T18:46:00Z

What is Polyarthralgia; this is from what I was told a general inflammation of the joints, or an autoimmune desease. This was my diagnosis after a year of tests could not find all the other nasties out there. The main one they looked for was Rheumatoid Arthritis, a lot of my symptoms pointed to this but nothing showed up in my blood so as it was not confirmed the diagnosis was Polyarthralgia.However looking at RA symptoms this is what I got, but i do know some people that have this and it was the same for them one friend had it for ten years before it showed up in there blood. For others it has still not shown up, not knowing I believe is worse then knowing as there is always the possibility that it may be something worse.Rheumatoid arthritis (RA) is an autoimmune condition that involves inflammation of the joints and joint pain. I take Nabumetone this works within reason although there are some nasty side effects to this drug so I don’t know what I may be in for in the future.

I was also diagnosed with Fibromyalgia yet another type of pain to deal with I've been told that this may be caused by (leaky gut syndrome) you may want to look that up. This can induce fatigue and tiredness cause legs and arms to feel like lead or that you have just done a marathon, when you have only just got up out of bed. In fact I tend to wake up more tired then I was going to bed.The pain and the fatigue are very debilitating they take the very life out of me at times and the sad thing is this is not who I am, I suppose that the strangeness that other people feel when they look in the mirror, it like one person described life they said even though I am 80 years old I still see myself as a 20 year old I still want to do the things of a 20 year old but my body just wont go with it.The biggest gripe I have while I'm at it LOL is when people say "But you look so well" boy does that grind me. As if I put this on for attention seeking, if I was look in for attention I think there are a lot better ways.One of the sad effects is my reduce activity with my family not being able to interact with them at play, my son plays golf something that I started a year or two before this happened and now I cant even get around the course on a scooter with him, Although I will try a day out with a proper golf cart in the summer as a treat more expensive but I guess its what you got to do. Another sad effect for me is not being able to work, who would employ someone who can only do 3 - 4 hours a week at intervals that are unpredictable. Any level of stress makes it worse so I can only see it being worse to try then not to. Then you got the problems of the state benefit system, and the "We don’t believe you cant work" attitude is it any wonder why people in our condition are petrified of even finding out if we could do some work. I was earning nearly £30K when this happened and now would be on between £40 and £60K as the demand for my skills has gone through the roof. I think that’s just a bit more then my benefits. LOL.Life sucks at times and looking through a window and the same four walls all the time it can suck for most of it.Sorry if your depressed even more buy now, but I am sure you to feel the weariness of illness.

I have wrote other blogs on my boat trip, art etc visit my profile and have a read, there are some funny jokes there also if you need a laugh.

Mike

FMS and RA symptoms

2008-04-18T14:59:00Z

My illness is FMS and RA symptoms This is classed as an Autoimmune disease , (and Diabetes) I generally have pain in one joint or another. Around the house I don’t use a stick unless I'm in real trouble, or if I am only going a short distance, depending on terrain or how bad i am that day. But If I am out for longer periods then I take it as the pain just gets worse. The other side of this is my hands, my hands are always in pain and some inflammation, so using my sticks can make this a lot worse. I wish I could say my disability is not going to stop me but it already has, just how much though well that depends on where I am going. I tend to look at where I am going or being invited to by analyzing it, this is more of a subconscious thing. If its just keeping some one company then if I not to bad that day I will probably go along, if not then I will stay and reserve my self for some thing else. a show or a day out. That way when I suffer afterwards for the activity I don’t mind so much.Not always using my stick or sticks seems to cause a lot of confusion to people, they can look puzzled,
Oh your feeling better NO its just that I am only going a short distance to and from my car. Or We missed you last week where were you, I was laid up in the house because I was in such pain and feeling sick either because of the illness or the meds.People don’t see the times when I crawl up the stairs or shuffle down because my hips or knees or feet are inflames and pain. Or when I cant eat a meal because my jaw is inflamed and I struggle to even drink, or when I cant even hold a cup. That’s just the way life is I didn't ask for it but I have it, I except it why cant you. I know other disabled people that are in a bad way worse then me in ways and they have suffered for longer, there family have been a strength to them as mine have to me and at the end of the day that’s what counts. So from me a big thank you to all the carers and families who give of them selves to help there loved ones in there hour of need, for giving encouragement, for holding a hand or shedding a tear.As for those with the negative waves I say Bye bye. It was nice knowing you. Mike

Errors

2008-04-15T17:09:00Z

I am getting errors when I am trying to read stuff. Any ideas?

Test

2008-04-04T23:28:00Z

Can you see me?

High cortisol levels and autoimmune problems

2008-03-26T09:38:00Z

Hi!

I am exploring the inter-relationship of cortisol levels and autoimmune problems.

I have spikes in cortisol levels so severe that one doctor was convinced I had a tumor on an adrenal gland until he did more tests. I think this is related to the SLE I was diagnosed with, problems with weight management, ovarian cysts, and fibromyalgia-type symptoms I get when I drink/eat anything with the artificial sweetener Aspartame. I also developed allergies about 20 years ago, which I think are related, too.

Anyone else have something similar?

Love and light,

Iana :o))

Welcome to autoimmunity!

2008-03-25T03:34:00Z

Have fun with this group!

Liesl