Naturally Healthy 4 Life's Blog

A blog about health, nutrition, fitness and wellness

But you look so good!

 

Invisible

I have not posted in a while – life is full and I was feeling somewhat lazy.  However, it is a rainy, stormy day and a long weekend, so I feel a desire to think and write.

The fantastic news is that I am officially in remission. The final diagnosis is generally Autoimmune Disease, but more specifically, Hashimoto’s Disease and Chronic Idiopathic Urticaria (“CIU”). I take a synthetic thyroid daily and the hypothyroid symptoms improved dramatically within a few months (less hair loss, less joint pain, better sleep, more focused). As I mentioned in my last post, I was prescribed Hydroxyzine in January for the CIU. Within the first week, the giant welting hives started transitioning to small chicken pox-like hives, then NOTHING. I have not had a CIU flare-up in any form since early February and I no longer need to take the Hydroxyzine.

My flare-ups have occurred about every six years since my early twenties. I am hopeful that with what I have learned about taking care of myself in the last crazy year, the cycle may finally be broken, my body will completely heal, and just maybe I can prevent a recurrence. I know now that taking exceptional care of my body is simply not enough – true wellness requires taking care of my mind and soul, as well.

It was initially very difficult for me to tell anyone that something was wrong – I am a very private person. When I reached out to friends and family about my “mystery” illness, I was touched by the responses I received. However, I was also very confused and hurt that so many people that I thought were close friends not only did not respond, but said nothing to me at all when I did see them. It wasn’t cancer, but it wasn’t nothing either.  Didn’t they care?  Maybe they didn’t believe that I was really sick?

The term “invisible illness” is relatively new.   Some examples include other autoimmune diseases like lupus and rheumatoid arthritis, fibromyalgia, depression and mental illness, digestive disorders like Celiac’s Disease, etc.

People often judge others by what they see – this is natural human behavior. For a long time, my illness was a mystery to me, as well, so when people asked me to explain, I could not and I would often hear, “but you look so healthy” or “you really don’t look sick.” It was also frustrating when people offered unsolicited advice – if my doctors and I could not figure it out, what made them think they had an answer? I had another friend tell me, while I was in the middle of a terrible flare-up, that I should look at it as a blessing. Good advice, but REALLY bad timing to tell me this when I was in the depths of it – excuse me if I don’t feel very blessed right now!  Of course, now that I am moving beyond it, I DO feel that it was a blessing – but that’s a post for another day.

Very few friends or family actually saw the illness because I was often in hiding. I stayed home a LOT and did not accept invitations or reach out to friends. When they did see me, I looked healthy. My husband is the only one in my life that I think truly understands what this last year did to me because he lived it every day – it also deeply affected his life, as well as our relationship. I know that he felt frustrated and helpless, yet was loving, supportive and encouraging to me.

Those friends that appeared to be “fair-weather” are still in my life. They simply did not see sickness. If they did, they certainly did not see it on a daily basis – the symptoms, the frustration, the depression and the isolation.   In hindsight, I think my expectations of their response were idealistic and unrealistic, so I choose to release any judgment of it now and hopefully educate people along the way.

We all are sick on occasion – we pick up viruses here and there.   But what if your virus never went away? In fact, what if it just progressively got worse and days turned into months, with no hope of resolution?  What if your doctors (even specialists) could not pinpoint the cause, provide a diagnosis or find a treatment, and you were told that it could potentially be part of your life forever?  Then try to imagine explaining this reality to your friends and family – when you look perfectly fine on the outside.

Our culture is taught to believe that illness and disease are visible and apparent, and that when we are sick, we go to the doctor, the doctor diagnoses the issue and prescribes treatment. That did not happen to me, nor does it happen to a lot of people, even in our very medically advanced world.

There is still more that we don’t than what we DO know. We need to continue to educate ourselves, let go of the past, manifest kindness and release judgment.

Of course, sometimes, this is easier said than done (especially in an election year).   😉

May 28, 2016 Posted by | Health, Uncategorized | , , , , , , , , , , | 2 Comments

One step forward and a half step back…

Red wine

As I have posted in the last few weeks, I have been so excited with the possibility that I may be going back into remission – or at least that the handfuls of meds I take every day are working. I felt incredible.

Unfortunately, I am now experiencing another flare up. When I saw the first hives pop up on Friday morning, I thought it might have been the VERY small glass of red wine I consumed on Thanksgiving Day (sulfates – an immune system under duress does not like them). But the symptoms have increased every day and I am now wheezing with giant hives (fortunately, no angioedema). I really do not know what has triggered it this time.

So I am back on a Prednisone taper and will be trying another treatment called “Xolair.” Xolair was developed to treat asthma, but has also proven to be a good treatment for chronic idiopathic urticaria that is not responding to H1 antihistamine treatments.

I will go to the immunology clinic once a month to get an injection of Xolair. My only fear (and there is a real possibility that it could happen) is that I will have a reaction to the Xolair. So after the injection, they will monitor me for an hour or so to make sure I do not have a severe reaction (anaphylaxis).

If someone out there that has had Xolair injections stumbles on this blog, I would love to hear from you.

Angela

December 2, 2015 Posted by | Health, Uncategorized | , , , , , | 2 Comments

Patient Heal Thyself

Yoga Meditation

As mentioned in prior posts, after another angioedema episode that brought me back to urgent care for another epi shot, I started on a strong dose, slow taper of prednisone. It did the trick – no hives, urticaria or angioedema for the course of the Prednisone.

I finished the Prednisone two weeks ago. A week ago, I woke up with a couple of hives and over the last week, I have had a few hives here and there – no giant hives, no urticaria, no angioedema – nothing like a real flare up.

So I AM rebounding after discontinuing the Prednisone, but it is a small rebound. I am going to hold onto that as a good sign.

I visited the immunologist last week and received a diagnosis: Chronic Idiopathic Autoimmune Urticaria, which is caused by anti-FcεRI and less frequently, by anti-IgE autoantibodies that lead to mast cell and basophil activation, thereby giving rise to the release of histamine and other proinflammatory mediators (Ref 1).  It is not known if this could be related to the hypothyroid issues I am experiencing.  From the treatment summary:

“Angela’s history and laboratory evaluation are not clearly suggestive of a specific etiology or process to explain her relapsing-remitting urticaria and angioedema. We discussed the limitations of commercially availably laboratory tests to assess immune function, which is broad, complex and influenced by genetics and environment.”

So the immunologist’s treatment plan is to continue to suppress the immune response with high doses of the histamine inhibitors and asthma medication, with a plan to start tapering in a few months, and to continue with the immune system boosting vitamins and supplements that I currently take.

MY plan is to make 2016 the healthiest year of my life. To help make that happen, I have adjusted my mindset, diet, exercise and lifestyle.  See my next blog post for the deets on my course of action.

Angela

References:

  1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2810697/

November 21, 2015 Posted by | Health | , , , , , , , , , | Leave a comment

Pills, pills, pills…

Woman many pills

I will start out by saying that my experience with health care providers thus far has been mixed. The emergency physicians and staff who have seen me in the midst of the worst blow-ups have been incredibly kind and compassionate. I received immediate, excellent care and relief.

However, the follow-ups with my regular physician did not go as well. I think he is a good man and a good doctor. But his questions, reactions and disbelief as I described my symptoms and the triggers that created the blow-ups made me feel like a hypochondriac that was whining about a rash.

Last week, I met with a LPN who is an immunology specialist and went through a lifetime of health history. Of course, my fear was that she would examine me while I was on my prednisone high and not believe that my symptoms were as severe as I described. I almost dragged my husband along with me to provide witness testimony!

I showed her photos that I took of the giant hives and angioedema. She was stunned at the severity and very compassionate (and honestly, the photos didn’t do justice to how bad it really was).

No diagnosis yet. They drew more blood for more testing. I am tapering off the prednisone and starting on a trial of high doses of the following:

  • Montelukast
  • Cetrizine (Zirtec)
  • Ranitidine (Zantac)

I talked about Cetrizine and Ranitidine in my last post. Montelukast is a leukotriene receptor antagonist (LTRA) used for the maintenance treatment of asthma and to relieve symptoms of seasonal allergies.

I will not provide my dosage information, as a doctor should prescribe anything beyond the over-the-counter recommended dose for you. However, this may be something you can ask your doctor about and find a plan that is right for you and your specific issues.

The results? So far, so good. I would certainly prefer not to take so many pills, but I feel fantastic and my hope is that I will be able to taper down and go back into remission.  My last taper dose of Prednisone is tomorrow and I have so far had no rebound of the hives, urticaria or angioedema.

Fingers crossed.

References:

  1. https://en.wikipedia.org/wiki/Montelukast

November 6, 2015 Posted by | Health | , , , , , , , | Leave a comment

Dealing with the Devil – Medications that Help

images pills

I feel fantastic – a stark contrast from my last post on this.   I will not continue to go on and on about how terrible this disease is – blah, blah, blah. There will be no more whining. It is now time to turn this into something positive.

The reason I AM feeling so fantastic is that I am on a high dose of Prednisone, with a slow taper schedule. (More on Prednisone below.)

When the hives are what I call “standard hives” – itchy, spotty welts and wheals, I found a combination of Zirtec (cetirizine) and Zantac (Ranitidine) helped keep them under control.

Zirtec is s a second-generation antihistamine used in the treatment of hay fever, allergies, angioedema and urticaria. It is a major metabolite of hydroxyzine, and a racemic selective H1 receptor antagonist.

Zantac is a histamine H2-receptor antagonist that inhibits stomach acid production. However, it is also used alongside antihistamines for the treatment of skin conditions such as hives.

However, when I have giant hives that literally cover my body with ¼ inch thick welts, urticaria in my face and mouth, and restricted breathing, the Zirtec/Zantac combo does nothing. The only thing thus far that has helped control the severe immune response is Prednisone.

Prednisone is corticosteroid. It prevents the release of substances in the body that cause inflammation. It also suppresses the immune system, which is why it has been prescribed to me.

However…Prednisone has significant adverse effects, especially with prolonged treatment, including cataracts, bone loss, weakening of the immune system, and many others. One of the most serious complications from prednisone is the risk of osteoporosis, which occurs from the bone loss.

The bottom line is that Prednisone will cover up the disease, but the underlying dysfunction (the cause of the disease) must be repaired.

I am off to the immunologist tomorrow, hopeful that they will have another solution for me.

Angela

References:

  1. http://www.drugs.com/prednisone.html
  2. https://en.wikipedia.org/wiki/Ranitidine
  3. https://en.wikipedia.org/wiki/Cetirizine
  4. http://articles.mercola.com/sites/articles/archive/2003/11/05/prednisone-dangers.aspx

October 29, 2015 Posted by | Health | , , , , | Leave a comment

When Your Own Body is the Enemy

Autoimmune post 3

I am a self-proclaimed health and wellness nut. I take exceptionally good care of myself, so I should be feeling FANTASTIC, right? Unfortunately, not even close. I am so very grateful, however, that I do take great care of myself – I cannot imagine how much worse this might be if I did not.

What I have discovered through the journey I will describe below is that the most helpful thing to me has been reading message boards, blogs and articles written by others that are going through similar challenges. So I think it is time to share this. Perhaps my journey can provide guidance and insight to others – and maybe even some comfort that they are not crazy or alone. Future posts will be more focused and a much quicker read.

As I sit to write this post, my body is covered in giant hives from the top of my head to my toes – itching, painful, ugly welts and wheals. They explode out of my skin so violently that they actually cause bruising. When they finally flatten out, my skin aches for at least another day. I remind myself how much worse it could be – that my face, lips and eyes could be swelling and I could have difficulty breathing, which was my situation LAST week at this time, necessitating a shot of epinephrine and another round of prednisone.

This miserable condition has flared up about every 5-6 years since my twenties, with each flare-up lasting 4-6 months. The physical manifestation of the current flare-up (the hives and urticaria) started in early May and has been the worst flare up yet. The other symptoms – fatigue, constant hunger, weight gain, muscle and joint pain and stiffness, difficulty sleeping, hair loss, increased anxiety, and other symptoms – started about a year and a half before that, with symptoms continuing to worsen until the hives appeared. In the years between the flare-ups, I have lived a pretty normal life – I have gone for years at a time with none of these symptoms.

An endocrinologist recently diagnosed me with Autoimmune Disease.   An autoimmune disease develops when your immune system decides your healthy cells are foreign and it attacks them. It is genetic (my mother had Hashimoto’s Disease and vitiligo and a sister also has vitiligo) and my autoimmune response appears to be triggered by chronic stress – my body stays in the “fight or flight” mode constantly and for months, and cortisol levels never come down. This has both weakened and interfered with the function of my immune system. In between flare-ups, I have been in remission.

I am grateful that there is a name for it and I wish I could say that the diagnosis means that there is a treatment. That is not the case. The immune system is extraordinarily complex and complicated – even for the specialists. The doctors certainly know what triggers the response in me and how it manifests, but aside from the emergency treatments, they do not know how to treat it.

In addition to the urticaria and hives, I have classic Hashimoto’s symptoms, so was tested for that (Hashimoto’s is an autoimmune disease related to hypothyroid and it is genetic). While all of my test results were in the “standard” range, they were at the lowest end of the range. The endo told me that 10% of those with Hashimoto’s symptoms are in the standard range on tests, but that they show benefit from taking thyroid medication, so he prescribed a synthetic thyroid two weeks ago. I am told that it takes 3-4 weeks to notice changes (obviously, my symptoms won’t resolve with the thyroid meds unless I do have hypothyroid). However, I do notice changes already – I sleep better, I have more energy (the daily fatigue is all but gone), my muscles and joints do not ache.

Yet the hives and urticarial remain. I am hopeful that they will magically disappear after 3-4 weeks on they thyroid meds, but the endo warned me that it might not do anything to improve the hives. I am going to visit an immunologist next week. Lots of healthcare fun.

We know that the food we eat can cause inflammation and inflammation is disease. Additionally, my immune system is broken right now – I don’t know what is triggering the hives on any given day. So a few weeks ago, I started a very restricted “autoimmune” re-set diet. For 30 days

  • No dairy
  • No eggs
  • No gluten
  • No soy
  • No nuts
  • No seeds
  • No legumes
  • No sugar
  • No nightshades (tomatoes, potatoes, eggplant, peppers)
  • No processed foods

It is Paleo Plus – and I DO feel like a cave woman – hungry and constantly trying to find something that I can eat! However, the cravings for what I cannot have are subsiding and I am finding recipes for some decent things to eat – believe it or not.  If I go out, I look for somewhere I can get a big piece of meat and a pile of approved veggies.

I hope you reach out to me with comments and questions.

Angela

October 24, 2015 Posted by | Uncategorized | , , , , , , , , , , | 3 Comments

The Stress Monster

There is more to life than increasing its speed.  ~Mohandas K. Gandhi

We all experience stress on a daily basis – mostly on a small-scale.  It’s part of life.  The human body is designed to experience stress and react to it (physically, mentally and emotionally).  It can be positive in the fact that it keeps us alert and ready to avoid danger (the “fight or flight” response).  It is difficult for scientists to define, as the effects differ for each of us.  Something that is distressful for me may be very pleasurable for another (i.e. public speaking – enjoyable for some, terrifying for others).  It can result from external challenges (major life changes, work, financial problems) or be self-generated (pessimism, perfectionism, negative self-talk).

However, when stress becomes continuous or chronic, without relaxation between challenges, it leads to distress.  Mentally, it can cause difficulty in concentration, trouble learning new information, forgetfulness, difficulty making decisions, feeling overwhelmed, social withdrawal, panic attacks – just to name a few!  It can manifest itself physically, causing headaches, upset stomach, elevated blood pressure, chest pain, difficulty sleeping, etc., etc….  The effects are different for everyone.  Consider the following:

  • Forty-three percent of all adults suffer adverse health effects from stress.
  • 75-90% of all doctor’s office visits are for stress-related ailments and complaints.
  • Stress can play a part in problems such as headaches, high blood pressure, heart problems, diabetes, skin conditions, asthma, arthritis, depression, and anxiety.
  • The Occupational Safety and Health Administration (OSHA) declared stress a hazard of the workplace. Stress costs American industry more than $300 billion annually.
  • The lifetime prevalence of an emotional disorder is more than 50%, often due to chronic, untreated stress reactions.

When we experience stress, our body releases a hormone called “Cortisol.”  It helps metabolize glucose, regulates blood pressure, assists with insulin release for blood sugar maintenance, and is involved in immune function and inflammatory response.  Small increases in cortisol can provide a quick burst of energy, heightened memory functions, a burst of increased immunity, lower sensitivity to pain, and assistance in maintaining homeostasis (the physiology of internal stability) in the body.

However, prolonged levels of cortisol in the bloodstream (chronic stress) can cause a multitude of physical problems, including (but not limited to!) the following:

  • Impaired cognitive performance
  • Suppressed thyroid function
  • Blood sugar imbalances such as hyperglycemia
  • Decreased bone density
  • Decrease in muscle tissue
  • Higher blood pressure
  • Lowered immunity and inflammatory responses in the body, slowed wound healing, and other health consequences
  • Increased abdominal fat, which is associated with a greater amount of health problems than fat deposited in other areas of the body. Some of the health problems associated with increased stomach fat are heart attacks, strokes, the development of metabolic syndrome, higher levels of “bad” cholesterol (LDL) and lower levels of “good” cholesterol (HDL), which can lead to other health problems!
  • The effects of stress often look like symptoms of other illnesses (partially due to the fact that stress lowers immunity and makes us vulnerable to many things), sometimes people mistake symptoms of illness for stress and vice versa.

In my case, stress ran my immune system into the ground.

About a year ago, I had a lot going on in my life – good and bad.  I had a very stressful job, I was caring for a sick, elderly pet and I was planning my wedding.  My entire life up to that point had required that I push through whatever stress was taking place at any given moment – I had to in order to survive.  This was natural for me.  However, while I took care of my body – ate healthfully, exercised regularly – my mind was spinning out of control.  I was able to maintain a remarkably calm exterior.  Based on my appearance and composure, no one could tell (including me) that the suppression of these stresses was making me very sick.

I started having panic attacks, chest pains, and I was sleeping very little.  This led to a complete meltdown of my immune system.  Within a few months, I developed urticaria and giant hives on a daily basis.  My body was suddenly allergic to foods I used to eat several times a week, if not every day – peanuts (and other tree nuts), berries, shellfish, and sulfates.  The medical doctors that treated me were perplexed.  They refused to believe that stress alone could be the cause of my many ailments, ordering test after test, sending me to specialists – all of which resulted in a diagnosis of something like “unspecified immune system dysfunction,” with no idea of how to treat it.  (Unfortunately, I spent a lot of money for that diagnosis!)  They prescribed various medications – steroids (when my life was at risk from the urticaria) to antihistamines.  At one point, I was taking four different medications to control the physical symptoms that were causing me pain and disrupting my life.

My body was in such terrible shape that a lifestyle change was necessary.  After the wedding, I quit my stressful job and focused on getting healthy – emotionally, physically, mentally.  It took about a month after leaving my job for the symptoms to start to dissipate.  While I am now quite healthy, I still have a long way to go in my journey; I spent a lifetime telling myself to “suck it up and move on!”  I know now that the stress does not go away; if you don’t address it, it festers and grows.  This year has been both incredibly blessed and terribly difficult – and an incredible learning experience!

The following are some ways that you can relax your body and mind to keep cortisol levels at bay:

  • Journaling
  • Meditation
  • Exercise
  • Yoga
  • Breathing exercises
  • Listening to music
  • Acupuncture
  • Sex

Don’t let the Stress Monster get the best of you!

Angela, Chillin’ Chica 🙂

References:

  1. http://www.webmd.com
  2. http://www.stress.org
  3. http://stress.about.com

March 29, 2010 Posted by | Fitness, Health, Nutrition | , , , , , , , | 2 Comments

   

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