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

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

   

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