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

No news is good news

stability

It has been a while since my last post, as I was enjoying the holidays, during which my symptoms remained quite stable. I had a few flare-ups after going off the Prednisone, but no angioedema or severe urticaria. I credit the stability to the changes I made to my diet, the immune boosting vitamins and minerals I take, time off of work (with no plans to do anything but rest and relax!) and increased yoga and meditation.

During this time, I did some additional research on Xolair. I found some discussion boards online that had mostly good feedback, but some bad feedback, as well. There were a lot of people that found immediate relief (from the chronic urticaria), but after several months of shots, the urticaria eventually returned. I am becoming skeptical that this is the cure for me.

Then a week ago, my insurance provider made a decision on the Xolair. They will not cover it. This is a big deal because it is a VERY expensive shot. Their reasoning is because I have not yet tried Hydroxyzine. When I asked my immunologist why they have not yet prescribed this drug, they responded that “it’s just another H1 antihistamine” so they did not understand how this was a reason for insurance to deny coverage.

SO…

I suggested the obvious – that he prescribe Hydroxyzine anyway. If there is no change, then we can tell my insurer that we have tried it and it was not enough. OR…maybe it will work?

I started Hydroxyzine five days ago in place of the Cetrizine. I take it at bedtime and it knocks me out cold (it is very sedating for me). I still have hives, but they are small and in clusters now – they almost look like chicken pox.  The Hydroxyzine is doing something.

I am hopeful that the stability over the holidays is a sign that I am healing and going back into remission.

The doctors have so far only treated the symptoms – they have done what they could to make me feel better right now, without knowing the source of the problem or how to fix it.

In my next post, I will talk about the lifestyle and dietary changes that I made over the last few months, which I believe have helped.

I intend to start healing my body from the inside out.

Angela

January 12, 2016 Posted by | Health, Uncategorized | , , , , , , | 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

   

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