Monday, August 30, 2010

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?

Thursday, August 26, 2010

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...

Wednesday, August 25, 2010

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. 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
Comment by myQutekelly on August 25, 2010 at 6:40pm
Thanks for this - shared! :)
Comment by Ellen S on August 26, 2010 at 10:01am
Thanks so much Kelly!!

Tuesday, August 24, 2010

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?
Comment by myQutekelly on August 25, 2010 at 6:39pm
This is very interesting! Love the labels! :)

Monday, August 23, 2010

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

Views: 343
Comment by Spurtler on August 23, 2010 at 4:02pm

Thanks for supporting my original "Girl in the Moon" post with your, clearly knowledgeable comment. I fear I know why you are so knowledgeable and wish you were not so. I also wrote and article specifically about taking prednisone which adds some more side-effects, to your already too long list. It also has a paragraph "Add Management to Medication to get the Most of Prednisone. Writing that paragraph was an epiphany. When I collated what I knew about the effects and the impact it had on folks writing to the forum at AARDA I suddenly realised what I wanted to communicate had worth and the idea of creating an online location for developing coping strategies germinated at that moment. Further online searches on this topic lead me to WEGO which, for me, has frankly been a cathartic experience. I am grateful to all who have commented on my posts and look forward to enjoining and making a difference. To you Ellen, you are a consummate ambassador for this site. I applaud you!
Comment by Ellen S on August 23, 2010 at 6:36pm
Thank you so much Spurtler. I am well motivated as you have noticed :) Too many on meds simply don't know everything they need to understand their disease or treatment. One must often search many sites to pick up a few pearls. so yes, i certainly would agree that there is probably a need for a comprehensive "guide" for this. It is a daunting task...
Comment by Spurtler on August 23, 2010 at 6:50pm
Is the guide a challenge or an opportunity? I'd like to think that we are building a treasure trove of great potential value. What a waste if we fail to distill and refine it!
Comment by Ellen S on August 23, 2010 at 8:58pm
I think it is both! A living document like this will take some time and effort. Don't get discouraged as it will likely take time for others to find the post and pass it along or comment. When there are so many things to be said it can feel overwhelming at times! Perhaps choosing a few Health Activists that you admire to ask their opinion might be a good way to start... what do you think?

Sumavel - The "New" Old Migraine Medication

Following in the footsteps of the newest pharmaceutical trends in which drug companies are taking old drug formulations and giving them a new method of delivery, Sumavel is a new delivery system for an old Migraine medicine - sumatriptan.

Sumatriptan is in the class of drugs called Triptans, which are considered the new 'gold standard' Migraine treatment for most Migraine attacks. There are several drugs in this class, but the first that was introduced to the public several years ago was sumatriptan - then called Imitrex. Sumatriptan is now available as a generic and as such has become much less expensive. Until now, this particular drug was available most commonly as a subcutaneous injection utilizing and injector with a very small needle, nasal spray or as a tiny tablet. (Other possible delivery methods include compounded medicines, drug patches, etc) The injection form begins to take effect nearly immediately and has more side effects, while the tablet takes approximately 20 minutes or so to begin hitting the system, making the patient suffer significantly longer before getting relief.

Sumavel is sumatriptan in a new type of needleless injection. It utilizes a quick, powerful burst of nitrogen to deliver the drug through the skin into the patient.

While delivering sumatriptan in a needless injection may at first sound really fabulous (who of us would normally prefer a needle over needleless?) all things are not equal with this delivery system. The video below gives more details about the drawbacks of Sumavel which include more pain and bruising at the injection site, and higher cost.

 . .

Patients with Raynaud's, circulatory disorders or autoimmune disease will want to take special care to discuss Triptans with their physicians. Triptans are contraindicated in several health conditions and your doctor may not be aware of all these conditions, so don't be afraid to look them up yourself and ask questions. It's definitely okay to request a particular medication or delivery system, and it's your responsibility to refuse a medicine you think may be harmful to you.

Giving yourself an injection is really not that difficult. Injectors are simple and nearly painless, and if you prefer, you can easily give yourself an injection the "old fashioned way" without the injector. (For further reading and a how-to video see B12 injection basics for some neat tricks on painless self-injection)

If you are having trouble with your current Migraine treatment or preventative, please seek the help of a Headache Specialist or Headache Clinic. These physicians are specially trained in the treatment of headache disorders including Migraine and are worth the trouble of locating and using them.

To share this post in your communities, please use this handy short url:

Views: 124

Friday, August 20, 2010

Random Acts of Kindness - For Better Health

One of my favorite things in the world is carrying out random acts of kindness. I just love, love, love planning a 'secret ambush' and doing it without anyone ever knowing who it came from. What a thrill!! Most of the time I never even meet the person I've ambushed - that's all part of the fun.

Discovering what I was missing

A while back I stopped doing these things because I was going through an extremely rough patch with Migraine and pain issues. They were completely out of control, and I wondered how I was going to be able to survive 40 more years living the way that I was, depending on my family to constantly care for me and help me whenever I needed it regardless of their own lives and plans. I became the "taker" of our relationships.

I had always been a "giver" up to that point, and realizing that I was sucking everyone around me dry made me feel even worse! My family realized how badly I felt about this and the hopelessness of the situation they knew I was in physically. The worried about me to the point of removing things in the house they thought I might use to harm myself. They didn't know how I could want to survive everything I was enduring.

In the meantime, I wanted nothing more than to feel better. Since I had no control over my health, I decided to focus on the things over which I did have control. I had plenty of time in bed to think about the things in life that gave me joy, and I knew I needed a little of that joy back.

Many of my favorite pastimes were out of my reach. I could no longer ride my beautiful horses, or swim in the pool or visit friends. What could I do?

That's when I remembered how good it felt to do random acts of kindness.

Random acts of kindness - an adjunct therapy?

I realized that when I was stuck in bed, I could plot and plan (what a great diversion to the pain!), and on those fairly good days I could do something about those plans. I could still be the "giver". I could still make people smile.

I started little - the simple things that weren't time sensitive. Among other things I...

* wrote thank you notes to people I didn't know
* made art pieces and donated them to charitable organizations for fund raisers
* donated to local food banks - for people and animals
* complimented strangers - with a smile
* tore up some of the checks I received for artwork I had sold
* wrote letters of encouragement to clients I had never met
* prayed for friends and strangers at noon every day
* went thru drive thru, bought nothing and paid for someone's order behind me
* paid for a family's meal at a restaurant at Christmas
* made valentine decorations for the nursing home
* gave away things I no longer needed to families who needed them
* brought magazines to the local jail
* spent a day with family making homemade caramels for neighbors
* supported local youths by attending concerts and activities usually only family attends
* anonymously donated scholarship money to specific youths who needed help
* bought tickets for fundraisers, then gave them away
* became a storm spotter to help warn the community of dangerous weather
* arranged the donation of equipment for local emergency services
* started a conversation with someone elderly, then hugged them when we parted
* brought a lamb to the nursing home
* bought a Christmas/Birthday gift for a needy child
* did laundry for my grown kids without them knowing
* helped someone make and address their Christmas cards
* gave riding lessons to local kids
* read stories to local pre-school kids
* gave presentations or acted as judge for local groups and donated the fee back to them
* won a raffle and gave the item away to someone who needed it more
* bought a boo-boo blanket for a sick child far away
* gave bags of candy to kids on a float so they could toss it out in a parade
* anonymously sponsored a trophy in a horse show
* gave a rose to someone random

When I did these things it was because I wanted to help someone else out. In the end, I found that the smiles I got in return really did make me feel better. The stress that accompanies living with chronic illness has almost vanished. It's true - smiles really ARE contagious! Oh yes, I still have the same pain. It's just a little easier to take each day now because I've tried to fill those days up with at least one random act that nobody expected - no matter how small.

I found the joy I was looking for again. It wasn't gone. I just forgot where I'd placed it!

The bonus? Now my family no longer worries that I won't want to survive my ordeal with chronic pain, and they smile a lot more too. :)

Have you ever thought of random acts of kindness as an adjunct therapy for your pain? Have you ever tried performing random acts of kindness? Have you ever done something like this anonymously? What is your favorite random act? How did it make you feel?

Comment by Amy K on August 21, 2010 at 6:35pm
What a wonderful post and reminder of the "good" doing good does for us!

Honestly, I have done little things here and there, donations, prayer, cards in the mail, etc, but I have never made it a daily goal. What a wonderful idea to do this and to see it's affect on our pain! I love it.

Thank you for sharing your hard times with us Ellen, it is good to know you experience them and then also come out of them! It is awful to think of you suffering like that, but to know that you have such tenacity to find a way to help yourself through it is so inspiring.

I will focus more on these kinds of random acts of kindness and keep you posted! A favorite but very small thing I like to do is smile. I always enjoy smiling at people and saying hi to them... even if they look at me like "why is she smiling?"
Comment by Ellen S on August 22, 2010 at 11:04am
Amy - I LOVE to smile at people. The grocery store line, sitting at a stop light. At first people look at you funny, but then they smile back. Then I remember how good it makes me feel to smile at someone - it cheers me up inside. I hope that, by smiling back they get that same feeling, even if it's just for a moment. It's a small thing, but by doing that I really do think you are helping to make a difference in your world. It is a kindness, to share a smile...
Comment by Amy K on August 22, 2010 at 1:29pm
I agree Ellen.

It's funny, so often I think I would like to do more for people but feel I am limited by money. Just offering to help someone out the door of the store, or opening the door for a mom with her arms full or pushing a stroller... these things are small too, but they make for a kinder and happier world. Sometimes, when (usually a gentlemen) opens a door for me, I am so much more appreciative inside than they know. I always say thank you, but he doesn't know that my body is hurting and that door is really heavy to me today! So, the little things do matter! =)
Comment by Ellen S on August 23, 2010 at 10:03am
I too love it when I have an extra dollar or two to spend on somebody, but so often it is those tiny little things - mowing a neighbor's lawn, walking across the street with a handful of garden flowers, taking my pet to the nursing home - that make me smile the most.

It doesn't take money to do most of these things. It takes time.... and intention.

Wow, I sure feel good when, even in my state of chronic pain and illness, I am able to do something to make somebody else feel good for a few moments. What a charge....!!!
Comment by Ellen S on August 23, 2010 at 10:05am
LOL! Maybe I should have added, that mowing the lawn for a neighbor for me consists of talking to hubs or a kid and asking them to do it. Lawns in our part of the country - in the country - can be acres!
Comment by amanda on August 24, 2010 at 9:45am
This is awesome Ellen! Thanks for sharing your ideas too because it definitely illustrated the range of "random acts of kindness" one can do. Big or small they are all effective! Have you heard of Operation Nice? I just came across it and it sounds like they are trying take the idea of 'being nice' to a cool proactive level: and @operationnice

Thursday, August 19, 2010

Chronically Ill and Falling Fom Style: 9-1-1 to the Fashion Police!

As a member of Bloggy Moms, this month's Blog challenge has to do with falling from fashion - where do you stand on fashion trends? Boy, I'll bet they don't see this post comin'!

When you're chronically ill, there are some things that simply cease to be important. When you're just trying to survive, you try to stop noticing what people think of you when they look at you, you hope they see the beauty inside of you instead. At the same time, those outwardly visible things can simultaneously make or break your day - like how you dress.

How can this be?!

When I talk about dressing, I'm not talking about dressing up, but simply getting dressed - mindfully. It's the little things that matter now. What I once used to take for granted I now depend on to help me feel better.

On the very worst days, when I wake up feeling awful, I try so very hard to get out of bed and get dressed all the way down to my shoes. Why? Because it makes me feel better. No, not the doing - that is downright painful, sometimes torturous with all that bending and stooping, grunting and groaning and pulling and tying. I feel better when I'm finished with all of that and stand and look at myself in the mirror and realize how much better I look. When I look ready to meet the world on its terms, I feel ready!

What's more, I try to wear something - at least one thing - that makes me feel like I did something special for myself. It might be a ring that everyone can see. It might be silky underthings that only I know are there. Sometimes it's mascara - a rare indulgence since autoimmunity took over my life. Or eyeshadow which just kind of make me look like I care a little. Sometimes it's a shiny silver bracelet engraved with words of encouragement.

On style? I haven't forgotten style, but I have become a slave to things that simply 'work' for me:

  • My big brown aviator sunglasses are far from glamorous, but they work for my Migraine and sun sensitivity, and they were the only ones that did. So - I wear them.
  • My stretchy sweat pants - I wear those because some days my abdomen can't take wearing anything that binds me in the middle without causing a lot of pain.
  • Oversized soft t-shirts that don't irritate the rash on my torso.
  • Heavy boot socks to keep the circulation going in my blue feet.
  • My Shape-ups shoes that allow me to walk with less pain.
  • Even in summer I sometimes wear black gloves as I try to keep the circulation going in my hands and fingers.
  • In winter I'm often seen wearing all these in layers in whatever colors are clean for the day.
  • Long pants or skirts cover scarred legs - when I dare.
Honest - I do try to mix and match when I can, but sometimes clean and serviceable just has to take a priority over pretty.

Yes, I'm sometimes embarrassed to go out in public looking like jailbait for the Fashion Police, so those days I pretend I'm in disguise, lol. You see, I used to be very fashion conscious - I was even a model for a few years, getting paid to prance around wearing fabulous clothes. Boy are those days gone!

I try to put on makeup and make my hair look presentable. I do try to wear things that make me feel good, even in the presence of those things that remind me of the items I can't wear anymore.

The fact is, I try, and I'm not alone...

So, before you send around the Fashion Police, please stop to remember why someone who is chronically ill may be wearing something that is well.... unfashionable. You might take a moment to stop and notice the yellow diamond ring, or the sparkly earrings, or the lovely shade of lipstick and bypass the other stuff that I assure you, we dislike as much as everyone else. Someday perhaps a designer will come up with a way to make clothing that is serviceable for us and our particular needs AND looks beautiful. Until then, I guess I'll keep going to the store incognito!
Comment by Spurtler on August 19, 2010 at 5:10pm
Here's a serious suggestion. Why don't we start a new fashion line of clothes and jewelry adapted for looks, disability accommodation and comfort. If it is based on the WEGO logo design it could become the "in" thing to wear like Lance Armstrong's rubber bracelet. Let's squeeze those lemons and see what's in there.

Please, please keep posting how you feel. I think it's important for you (you can look back and see that there were both good and bad days, emotionally) and for the community. I personally am looking to learn more about coping strategies that disease victims have developed so that they tools and tips can be managed and distrubuted to those in need. Your article is great!
Comment by Ellen S on August 19, 2010 at 5:14pm
Wow Spurtler - what an interesting idea! You know, there are great places like Cafe Press that will custom imprint and sell items for you. I suppose if all else fails, a nice soft WEGO Health T-shirt with a catchy phrase would be just as serviceable as a plain one, and much more fun.

What do you think? Have you got any great ideas burning in your mind????
Comment by Spurtler on August 19, 2010 at 8:39pm
OK, Pandora. You asked!
I would start with something simple to see if the idea catches on (Test marketing).
I'd ask the member network if they know of any fashion designer that meets the three requirements, looks, disability accommodation and comfort (this could be tough to find or design but let's try!).
I would ask the membership to come up with designs to promote inclusion and pride of ownership
I would seek sponsorship to jointly promote WEGO and the sponsor (e.g. a bracelet or pendant with engraved medical condition (could be just a plastic card) or "I'm a WEGO Activist. This is the only warning you're gonna get!")(Google and Microsoft have PHRs that could be promoted)
I'd try to get some celebrities to wear and promote the items (Snoop Dog)
I'd dedicate the profits to a worthy cause.

All of this stuff has been done before. I did it for a small semi-pro American football franchise. The key is to use the talent and network of your members and promote, promote, promote.

And make it fun.

Going back to my first comment, please don't stop sharing your feelings. I identified with everything you wrote in the blog because I've heard my wife comment on each of them.
Comment by Spurtler on August 19, 2010 at 11:00pm
Postscript thoughts:
Have the contestants of Project Runway design the fashion items and accessories.
My wife feels better after eating chocolate so designer chocolate/candies might be a different approach.
(Apologies to the nutritionists amongst us)
Comment by Ellen S on August 20, 2010 at 11:35am
Fab ideas! Since you have done something like this before, would you like to try to head something like this up? Of course we'd need to ask WEGO Health if they would support this effort, but if that doesn't work out there's nothing to stop this group from finding another way to produce fashion that is functional for our disabilities - is there??!
Comment by Spurtler on August 20, 2010 at 2:01pm
Thanks for having the confidence in my ability to carry this responsibility. I've been a member of WEGO for 3/4 days. I haven't had time to visit all the corners of the site. I'm interested in this project because it's both mentally and physically challenging with a great potential reward. Because it involves reaching out to the general public I think it is a project that must be blessed and supported by WEGO management. So I'm not saying "Yes" and I'm not saying "No". What I can do , however, is pull together a presentation of the ideas so that we both can pitch it to the powers that be. I suspect that they will already be on top of this so the best results may be an amalgamation (can we have a spell check on these blogs, please?) of the ideas. What do you think?

Here's a postscript to my postscript, and I think the best idea I've had so far. The most difficult part of the proposal is the design of something that may not already exist. Our goal is fashion high, comfortable clothing and accessories that are a accommodation to the disability. (I hate the word disability). This design needs skills and experience in the fields of fashion, clothing manufacturing, bioengineering, medicine and physical therapy just for starters. Just because I'm an engineer, have a doctor and watch Project Runway does not qualify me. But there are colleges, throughout the world that do have the required experise. Maybe my idea of contacting Heidi Klum and having an international challenge supported by "Save the Children", might have some merit. This could be huge. Let's get the blessing we need from WEGO. I think the benefit of this idea can be enjoyed internationally rather than merely in the US.
Comment by asburyparkangel on August 26, 2010 at 11:15am
Ellen, thanks for this blog. Hilarious and yes, even serious. You're a beautiful free spirit and brave gal! You deserve my VOTE for the best gal around. Thank You for the time you invest in us.!.
Comment by Ellen S on August 26, 2010 at 5:48pm
ashburyparkangel - Thank you Dearie!! You made my day. I assure you that the feeling is absolutely mutual! :)

Monday, August 16, 2010

Invisible Illness Meme 2010

Invisible Illness week is coming up. This is an invitation to you to join in the fun and awareness of invisible illnesses by participating in a fun meme. I did this last year, now let's see how this year compares:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Lupus, Graves' Disease, Sjogren's Syndrome, Raynaud's, Dystonia, Migraine, Trigeminal Neuralgia, Malabsorption, LPR, etc...
2. I was diagnosed with it in the year: My diagnosis have been ongoing from my late teenage years
3. But I had symptoms since: Childhood
4. The biggest adjustment I’ve had to make is: Changing my expectations of myself
5. Most people assume:...because I've put makeup on and gotten dressed and am smiling, that I am feeling good.
6. The hardest part about mornings are: Waking up each day in pain, yet having to function anyway.
7. My favorite medical TV show is: I'm not sure actually...
8. A gadget I couldn’t live without is: My heating pad.
9. The hardest part about nights are: Not being able to sleep because of the pain, and running hubs off because I turn on the TV for distraction.
10. Each day I take __ pills & vitamins. (No comments, please) I'm down to only about 10 now :)
11. Regarding alternative treatments I: embrace them in an integrative setting
12. If I had to choose between an invisible illness or visible I would choose: Invisible, because I can still pretend to be okay, even when I'm not.
13. Regarding working and career: I do what I can, when I can. My career is over, but I can still help others live better lives by sharing my experiences.
14. People would be surprised to know: that I am happy, even joyful despite the fact I am never without the constant companion of pain.
15. The hardest thing to accept about my new reality has been: The parts of me I have had to leave behind, and the effect it has had on my family.
16. Something I never thought I could do with my illness that I did was: Have joy in my life again.
17. The commercials about my illness: There aren't any.
18. Something I really miss doing since I was diagnosed is: Sitting in the sunshine and riding my beautiful horses.
19. It was really hard to have to give up: my two businesses - our Arabian horse breeding farm, and my stained glass art design, as well as my job as an emergency dispatcher.
20. A new hobby I have taken up since my diagnosis is: Health centered social media!
21. If I could have one day of feeling normal again I would: Spend the day riding my mare in the sunshine, and the evening playing in the pool with my family.
22. My illness has taught me: that I'm stronger than I thought I was.
23. Want to know a secret? One thing people say that gets under my skin is: The stereotypes perpetuated by the media about pain patients, and the effects that has on physicians.
24. But I love it when people: forgive one another's failures and shortcomings
25. My favorite motto, scripture, quote that gets me through tough times is: 2 Corinthians 12;10 I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
26. When someone is diagnosed I’d like to tell them: Concentrate and find joy in the things you CAN do, not those you can't.
27. Something that has surprised me about living with an illness is: How terribly rude and disrespectful some physicians can be to patients, and that they think this is acceptable behavior.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take over doing my chores for me every day.
29. I’m involved with Invisible Illness Week because: those of us with invisible illnesses need to remember that we are not invisible, and we have voices that should be heard.
30. The fact that you read this list makes me feel: Grateful that you cared :)

Comment by amanda on August 16, 2010 at 5:15pm
This is a great post, Ellen. Numbers 12, 13, 22, 25, and 29 were probably the most impactful to me. I hope reading this will help inspire others with invisible illnesses to feel better and even encourage them to write one as well! I know that lots of people are thrilled that #20 is true! :)
Comment by Ellen S on August 16, 2010 at 7:52pm
Thank you so much for your comment Amanda! It was really fun to do this again and compare my answers this year to those from last year.
Comment by Lisa Copen on August 16, 2010 at 9:45pm
Ellen, can I reprint this one over and II week? ? Can you send me a bio and a link to where you'd want me to link to WEGO too and I will be sure to give you a shout out back! thanks tons!!
Comment by Ellen S on August 17, 2010 at 10:00am
You betcha! Will get that over to you later today. Thanks so much :)
Comment by Karen Graffeo on August 23, 2010 at 10:57am
Your 30 things made me happy and sad all at the same time. You show such strength and are a terrific role-model. Thank you for sharing - I'll be posting my 30 soon as well.
Comment by Ellen S on August 23, 2010 at 9:40pm
Karen - be sure to give us a link here so we can visit your list when it's finished! (Hugs)
Comment by JennyPettit on August 23, 2010 at 11:55pm
Ellen - do you want us to post links to our (or ours directly) somewhere specifically on WEGO? I thought I saw something the other day but can't find it now. I have mine done, and on my blog, FB, and linked for Twitter, but want to be sure I get it on here too if there's a specific spot (if not, I'll just post it on my own WEGO blog). Thanks!
Comment by Ellen S on August 24, 2010 at 9:48am
JennyPettit - I just added an event you can find here. Please RSVP then add your link above mine!
Comment by Susan M. on August 26, 2010 at 4:20pm
Thanks for sharing this Ellen. It's amazing how much and how little we can know about people.
Comment by leejcaroll on September 3, 2010 at 9:24pm
As a women in pain awareness advocate number 5 is ithe one that can ironically cause us the most grief.
." Most people assume:...because I've put makeup on and gotten dressed and am smiling, that I am feeling good."
Next week, when I give a workshop at a small women's retreat, because I did WIPA last year I will be talking about invisible illnesses instead. I was not aware there was Invisible Illness Week Thanks for letting us know.
You are quote a lady. I knew that already but now I know it multiplied by 100.
Comment by Ellen S on September 4, 2010 at 4:58pm
((Hugs)) leejcaroll - the feeling is mutual :) Good luck with your workshop! I hope you'll let us know how it goes... You are fabulous girl!
Comment by leejcaroll on September 4, 2010 at 5:12pm
Oh foo. (I don;t know an emoticon for blush.) ((*_*_))
Thanks unfortunately, and think large part was the date, neither librarian or I realized was holiday weekend. only 2 folks came but it turned into a good support time, I thinnk. I have started a support group thru and that will start next month so hopefully that will be better. bummed that 2 of the 3 from that said they would be there today and didnt make it, hoping that wont be case for the group meeting.
Hope you have a good and safe weekend. ((*_*))
Comment by Ellen S on September 4, 2010 at 5:18pm
Hang in there! The weekend probably got the best of them. Starting a group is always a time intensive proposition. Give it a little time and see what happens... :)
Comment by leejcaroll on September 4, 2010 at 9:37pm
Thanks. I would like to see the support group work out, hoping the first real meeting next month will work.