Telling Your Family about Autoimmunity

I remember the day I found out about autoimmunity. I was still a teen and went by myself to the doctor's office - a new one that was closer to my home - because my hands were blue and cold and numb. I walked out with a hole in my arm from a blood draw and my head spinning with precious little information and many questions.

When I got home nobody asked me about my appointment, so I just told my parents that they had taken some blood to check for some 'disease' called Lupus. I told them the doctor said it was a fairly rare disease and my chances of having it were small, so I wasn't too worried, but looked forward to getting the results in so I could go on about my life.

When I later found out I actually did have Lupus, I called my mom to tell her. I don't remember exactly what was said, but it was obvious that nobody really understood what
was going on. In all fairness, that included me! As far as the family
was concerned, I had bad circulation, as had my aunt and some other
family members from way back. They had lived and gone about their lives
just fine. I'd had circulation and temperature regulation problems from
early childhood, so obviously be just fine too. In their minds, I had
'inherited it' therefore it was 'normal' .

I didn't talk much about my autoimmunity for many years after that. It depressed me that any time it was mentioned, all eyes glazed over and the subject was changed. Not because I was interested in making a big deal about it, but really, I just wanted them to understand what was happening to me.

I learned early on to not try to explain autoimmunity to anyone. Even hubs had a hard time grasping what I was saying. It sounded crazy - my body was attacking itself??! Whoever heard of such a thing?! Hubs figured he didn't have to understand it so long as I did. He was there to support me however he could and did try very hard. Because he didn't understand the disease, my home life was always a bit of a challenge tho. He tried to "help" and made schedules for me so I could get everything in the house done while caring for the kids. The first question out of his mouth when he came home was uttered entirely innocently - "So, what did YOU get done today?" *headdesk*

Because my family didn't understand, I tended to close myself off and not discuss things. It was just easier that way. I have often wondered if my life would have been very different had I tried harder to explain things to them. There was a lot of dysfunction when I was younger because I would fall asleep at improper times, or was in pain or couldn't manage the energy to do all the things I needed or wanted to do. Some days I felt good, and acted normally, which made things even worse. After all, from their perspective, why would they need to expect things differently from me today when I was able to do what they wanted the day before? In their mind I had become lazy. At one point not too very long ago, my mom sat with me and my kids in the car and told me what a waste my life had been. *Ouch* She still doesn't get it.

In retrospect, I wish I would have been more proactive where this is concerned. I suffered for a long time alone, and in silence because I didn't do that. Back then there was no internet - no way to go online and get good information or support - no communities or places to go to help. Things were very different then. I suppose that is one reason I am so passionate now about being sure that patients get the education and support that will change their lives. So that their lives don't have to be a lonely struggle.

I began a discussion in the Autoimmune Diseases group that addresses telling your family about your autoimmunity. I hope a few readers might go and check it out and add their own thoughts. How did you tell your family about your autoimmunity? How did they react? Did you choose not to tell them? Why? If you had it to do over again, would you do it the same way? What do you see in your autoimmune communities? Do you think it is different from one autoimmune disease to the next?

I think this is a difficult subject at the very least. What I would really love to do is to create an introductory letter to the family of autoimmune patients to help them understand the disease and what to expect from autoimmune patients. Would you like to help me try to create it?

How can he play the piano when he has lost his arms?

If you want it, then do it.

After an electrical accident that took this young boy's two arms, his family worried that he would be able to care for himself and be a happy person. He is able to do that and so much more.

I am passing along this video because I know all of us with chronic illness need encouragement. We fight battles each day that others do not understand. We need superhuman strength sometimes just to survive. Struggling so hard each day is exhausting. Then I happen on a story like this that makes me feel like I can do anything if I just keep trying. Don't miss out - watch his comments after he plays...

This post is dedicated to those who are fighting battles small and large... to those who press on when the world isn't fair and you feel your life has been stolen from you. Thank you for all that you do. In making your own lives better, you are changing the lives of those around you. You inspire us to become all that we are truly capable of instead of what we think we can do...



Who inspires you as a Health Activist? As a person who suffers chronic illness? Have you ever done something that amazed someone

Super Kool Facebook Tools for Health Activists

I was not interested in Facebook until long after I became a Health Activist. I joined quite reluctantly, and it was a fair amount of time before I realized what an asset to my efforts it was. It is now one of my go to places when I want to connect with others or wish to get the word out about a Health Activist activity.

Facebook constantly changes however, and keeping up with all of those changes can be frustrating. Just today I found the need to go in and remove 2 buttons that allowed everyone to see my exact address (and a map how to get there) each time I logged in. I did not opt in for this, it just *happened*. Oy.

Today, I accidentally happened on a techie blog post from Life Hacker that discusses many options for Facebook control that I had never heard of. I wanted to share these great tips with Health Activists here.

The interesting article gives several solutions for common problems and "issues" like:

* Accessing Facebook chat through your preferred client
* Backing up your account with SocialSafe
* Having a plan for your account after death
* Prevent sites from auto-customizing content with your Facebook login
* Filter and compress your activity alerts
* Find out when anyone else logs into your account
* Get back the basic privacy you signed up for
* "Quit" Facebook while still staying in touch
* Strip out annoying games, quizzes and "crud"
* Stop your friends from revealing your location

What tools for Facebook do you rely on?

What tools do you find helpful and worth sharing with other Health Activists?

Which tools do you think are not worth their salt in a Health Activist setting?

Severe Drug Reaction? New Finding - It Might Actually be an Immune Response

A type of drug reaction called Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS) most frequently happens when a patient is taking antibiotics and/or anti-epileptic (anti-seizure) medications. Several other drugs have also been implicated in DRESS. Until now, the reason why this type of reaction occurs was completely unknown.

A recent article in the journal Science Translational Medicine says Scientists have found that DRESS (also known as Drug-Induced Hypersensitivity Syndrome (DIHS) is actually the result of an immune response to a reactivated virus, most often a herpes virus. In DRESS, the body's immune cells (fighter T cells) go into overdrive to fight the reactivated virus, causing the elevated number of eosinophils found in routine blood work.

The disorder can look like autoimmune disease, but the T cells aren't actually attacking self, they are actually attacking the virus.

Symptoms of DRESS include:

High fever
Skin rash
Organ inflammation including liver, kidney, lungs and heart

About one in 8000 persons taking these medicines get DRESS. DRESS is fatal in about 10% of the population that gets it.


How does this work?

Herpes is a virus. When a patient gets a herpes virus (there are many possible variants) the body is able to fight it off, but instead of killing the virus, it goes dormant. These viruses can reappear later in extremely mild to extremely severe situations.

Chicken pox is a common virus that works in this manner. You get sick, body fights off the virus, virus goes dormant hiding in cells, virus reappears when immune system is low and we call it another name: Shingles.

In this case, the medications actually cause a reactivation of the virus living dormant in our cells. This results in the body's immune response and the attack on organs errrr... the virus.

What is eosinophilia?

Eosinophilia is an uncommon problem, but if you look at the side effects of many drugs taken by Migraineurs and chronic pain patients as preventatives and pain treatments, you'll notice that eosinophilia is often listed.

Eosinophils are cells that are present in extremely low numbers in the blood system. When a white cell manual differential is performed (a special blood test that looks at and counts each individual type of white blood cell), you can expect numbers to range from 1 - 4%. Eosinophils' job is to aid in the destruction of phagotocytized cells. An increased number of eosinophils is called Eosinophilia and it is a very uncommon condition. Eosinophilia most often occurs in severe allergic reactions and parasitic infections. A type of leukemia can also present itself with increased eosinophils, as can some autoimmune disorders. Taking the supplement L-Tryptophan can also cause eosinophilia as a part of the disorder Eosinohilia-Myalgia Syndrome (EMS).

Eosinophilia that occurs for a very short period of time is not likely to cause serious damage, however long lasting eosinophilia is dangerous because the eosinophils accumulate in tissue and vital organs.

Treatment for DRESS

Treatment for eosinophilia consists of corticosteroids, but in DRESS is controversial The treatment for DRESS is much less defined. It is suggested that anti-herpes drugs may be beneficial, but this is all very new, and as of yet no research has been done to either prove or disprove this assumption. Certainly lowering or ceasing the drugs causing DRESS is warranted, but often leaves the patient needing other medications for their pre-existing medical conditions.

My story

About two years ago, while undergoing therapies that included multiple drugs that can cause DRESS, I suddenly acquired eosinophilia. I was asked about an allergic reaction (none) and whether I took L-Tryptophan (no) and immediately tested for parasites (so much fun). Everything came up negative. An additional test was done to confirm the eosinophilia (still elevated) and I was referred to a Hematologist (blood doctor) for evaluation for Eosinophilic Leukemia and another confirmation of eosinophilia (yes it was still there).

The genetic blood test (one single test) that I had cost me in excess of $5,000.00 and showed I did not have the marker for cancer. I stopped or lowered the medicines that I (not my doctors) found could cause eosinophilia. In the meantime I had another appt with another doctor who diagnosed me with Trigeminal Neuralgia (Tic Doloreaux or TN) which he suspected could be related to a hidden case of shingles (not an infrequent occurrence), and I was prescribed anti-herpetic medicines to try. At the same time a deficiency of vitamin B12 was discovered and I began supplementation. My TN disappeared as did my eosinophilia, and my intractable Migraines nearly disappeared. I had not felt so good in many years, but it was short-lived. My hematologist dismissed me and my neurologist thought my success was all because of the B12 supplementation, so I quit the anti-herpetic.

Learning about this reaction now, I can't help but wonder if my strange case of eosinophilia may have been more than any of us thought. Then again, maybe it was just a fluke. Since that time I have taken great care to be sure that I take the bare minimum of any meds that could cause a recurrence of my eosinophilia. I can't get away from one of them, but the others I have stopped entirely - with my doctor's help, if not their approval.

I will be taking this information to my doctor on my next visit, and we'll see if perhaps another trial of anti-herpetic medicines might be in store...

Steroids Eat Your Stomach For Breakfast - Challenges of Prednisone Therapy

The above statement was uttered by my Neurologist as he prescribed yet another dose of steroids for my intractable Migraine issues. It was uttered again when I was re-diagnosed with autoimmune disease.

Prednisone is hard on the body, but it is especially hard on the digestive system - particularly the stomach. When you add to the fact that those with autoimmunity often are forced to utilize high doses of NSAIDS for long periods of time - and the fact that NSAIDS also "eat stomachs for breakfast" - well, the results can be quite serious.

Why are steroids hard on the stomach?

Pred and other steroids are stress hormones. They are produced when our bodies need to deal with some sort of mental, emotional or physiological stress (like an illness or injury) Taking these medicines for long periods of time make our bodies act like we are in a constant state of extreme stress. Stress also causes increased stomach acid, and that's where the connection comes in...

The treatment...

Physicians worried about your stomach when you're taking a steroid drug will often prescribe a medicine like Prilosec (omeprazole) to avoid any problems. However, even with these medicines, it is common for long-term steroid users to have stomach upset ranging from reflux to ulcers. Having this side effect can happen very, very quickly. If you are a steroid patient and you are vomiting "coffee grounds", blood, or are having uncharacteristically severe abdominal pain during your therapy, get in to see your doctor right away.

...is sometimes the cause.

Omeprazole is a good medicine for helping your stomach. It too has side effects however, and one of the worst is that it eventually can cause B12 deficiency. B12 levels below 400 are associated with neurological damage which, over time can become permanent.

How does this happen?

B12 is bound tightly to animal based protein. It must be broken from those bonds by stomach acid. If there is insufficient acid present, the B12 will remain bound to the protein and cannot be absorbed. These medicines stop your stomach acid, but they also stop another important secretion - Intrinsic Factor (IF). This is the special gastric liquid that binds to the B12 after it has been broken away from the protein. IF carries the B12 thru the wall of beginning of the small intestine and into the blood stream where it is picked up by the liver and stored. Without IF, B12 can't be absorbed.

The B12 treatment:

B12 can be supplemented by patients taking steroids, but it is not necessarily recommended to take these supplements orally in pill form. The best way to get B12 into your system is via injection or sublingually.

We all know what an injection is - it utilizes a needle that punctures the skin and either goes into the tissue below the skin or into the muscle. B12 can be injected either way. It is then stored by the liver and used as the body needs it.

Sublingually means that the B12 is placed on the tissue under the tongue and it is absorbed directly into the bloodstream from this vessel rich area. Sublingual B12 is thought to be as effective and easier to take than B12.

For more information on B12 and B12 injections, click here: B12 injection basics

Views: 477

Blog Warning Labels

I ran across this as the result of a tweet by @DrVal yesterday and wanted to share:

How many times have you as a Health Activist run across identical information in multiple places and wanted to give the writer a sign that says:

WARNING This article contains unsourced unverified information from Wikipedia

Or how about the article you found full of mis-spellings, inappropriate usage of antiquated terms, making it obvious the writer had not one clue of the subject matter:

WARNING: Blogger does not understand the subject they are writing about

Here is the Tom Scott blog post to make you chuckle while nodding sagely.



Are there additional stickers you would love to create? What would they say?

Exogenous Cushing's Syndrome - The Challenges of Prednisone Treatment

The Girl in the Moon - The Autoimmune Diseases group recently had a great question about prednisone and dealing with the side effects of that treatment. Instead of replying directly to the post, I decided to address the writer's questions here where longer posts are a little easier to read.

The video on the group discussion talks about the moon face, belly fat and buffalo hump that is a part of high dose prednisone treatment. For those that don't understand how this works, prednisone is a relative of the adrenal hormone Cortisol. Cortisol is a stress hormone. When we take prednisone in large doses, it gives us the same symptoms as someone with Cushing's Disease/Syndrome has - excess cortisol. In the patient taking pred, this is called Exogenous Cushing's Syndrome.
The weight fluctuations that come with hypercortisolism are not something that can be controlled by the patient, unless they choose to lower their prednisone dosage which is not recommended without careful physician monitoring. NEVER stop pred treatment without talking to your doctor first as this can result in death.

We all want to look good, not just be fun to watch, lol. Dealing with weight is always difficult but going on a low cal diet, with all due respect, will likely result in more problems than help in this area. Why? If you are already eating appropriately for your frame and activity level, and not losing weight, it is almost surely a side effect of the pred or other hormone balance. Assuming again that you're eating appropriately to begin with, then by changing your eating habits long-term you will likely end up suffering deficiencies and further symptoms of disease. This is NOT something we need to deal with when we are already immunocompromised and chronically ill.

Additionally, much of the weight that is added on in this situation is water weight over which we have little control. That is why the fluctuations can be so severe from one day to the next.

Some side effect issues that those on pred have that are directly related to this secondary cushing's situation, are:

* Weight gain
* Diabetes Insipidus (water diabetes)
* Glucose Intolerance
* calcium deficiency and osteoporosis
* kidney stones
* sleep disorders
* chronic pain
* increased blood pressure
* mood swings that can be severe
* headaches
* hirsutism

The list goes on and on unfortunately. The treatments for this type of hypercortisolism is to target each specific symptom as they appear:

* Weight gain - watch the bad fat content of food, eliminate corn syrup (which is immediately turned into belly fat) and anything white from the diet as well as fruit juices containing sugar or corn syrup. Monitor salt intake and supplement with iodine and minerals as necessary to compensate. Sea salt or Himalayan salt is an especially good substitute for table salt. Test for vitamin and mineral deficiencies and supplement as needed. Exercise is vital to feeling good and staying healthy when on pred. It also helps kidneys work more efficiently and lowers blood pressure. Eating a little protein all thru the day will help keep protein levels up and help to not stress the kidneys with an overload. Eggs are an excellent and natural source of many of the things pred patients usually need.

* Glucose Intolerance - this often subsides when pred is lowered or withdrawn. Diet and exercise is the best way to main insulin sensitivity and good blood sugar levels.

* Calcium deficiency may mean taking bisphosphonates to keep bone density healthy (beware of this long term however). Exercise (weight bearing) will also be a vital part of treatment.

* Kidney stones are a result of calcium loss and need monitoring and treating before they become too large or painful... believe me catching them early is WAY better than the alternative.

* Sleep disorders are a result of the diurnal pattern of normal cortisol production being disrupted by the medicine. There are many methods to attaining healthy sleep from herbal teas and taking benadryl, to altering body temperature before bed and taking Ambien or anti-depressants of blood pressure meds which also make you tired, but it's likely that this symptom will fluctuate just like the weight does. Melatonin is a hormone that may be helpful, but caution for some autoimmunies who may have increased immune response from it.

* Chronic pain is treated symptomatically with care taken

* High blood pressure can be treated by lowering salt in the diet or with meds, but be careful to supplement for any vitamin deficiencies that may result.

* Mood swings are also treated symptomatically, but a team approach for this is usually considered best, and includes a psychologist or psychiatrist as well as medical doctors.

* Headaches are best treated in a team approach with a Headache Specialist who is uniquely trained to treat these kinds of conditions in those who are difficult to treat.

* Hirsutism is easily treated with lasers, electrolysis, etc and is no longer a reason for embarrassment.

When cortisol is unbalanced, (even by pred) the result is that many other hormones will also be sent off-kilter. It is vital that all these other hormones (thyroid, repro, insulin, etc) be periodically checked and imbalances be addressed, beginning with baselines when pred is begun as well as throughout treatment. Do not ever assume a new symptoms is just "part" of therapy. It is likely the therapy has caused another problem elsewhere that may be treatable.

For more information and to participate in discussion, click here

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