Why didn't you know?

Now that I have begun to talk to people about my mostly invisible illness, a frequent comment has been "I had no idea!" Some knew that I was frequently ill but were unaware of the full extent of my illness.  In reality, only two people in my life know the extent of my struggles on a daily basis and even they only know what I have been able to express and they have been able to observe.

I think that there are two distinct reasons for my silence up to this point.  One is external and one is internal.

The external factor is entirely associated with the spoken and unspoken word of others.  I found out quite quickly that when someone asks how you are, they really don't want to hear anything but good, great, or well.  If you ever say that you are not well, doing poorly, etc, you will at best receive a blank stare and an "I'm sorry to hear that" before the conversation is entirely over.  Do I really need to list the other comments I've gotten?  What would you say in response?

To avoid this whole scenario when asked how I am I say: "Fine," "Alright" or "Ok."  I can not bring myself to lie and say well, good or great.  The surface question is then answered and the conversation has the potential to move on, if I can talk around the big issue in my life.  I can't always do that.

I would love to say that the majority of the comments have been from those in the acquaintance group.  That, however, is very far from the truth.  I and others have been most wounded by those firmly in the friend category.  I have had very few positive responses when I have shared the depth of my invisible illness.  I do understand that if you have never been significantly ill you can not empathize, however, you can sympathize. Just acknowledging the severity of the illness goes a very long way.  Immediately changing the subject, questioning the honesty/mental health of the individual, or encouraging the person to be more positive is never helpful.  If you do acknowledge the illness and offer to help, please follow through.  May you occasionally have someone take advantage of you?  Perhaps.  Much more frequently you will be able to quite easily bless another person.

If you think that someone is not truthful about their condition, wallowing in self pity or taking advantage of someone else, PLEASE pray about it before talking to that person.  I have had this conversation with others several times, and only ONCE was the person spot on.  She spoke wisdom into my life and the Lord blessed it.  I have felt betrayed and devastated every other time.

Never encourage someone to not believe their spouse unless you have excellent evidence of untruthfulness. What could be more devastating to a chronically ill person than a spouse who no longer believes them?

Just as we have been told since we were children, the outward appearance is not reflective of the condition of the interior.  I have often longed to look as sick as I feel.  It has not happened often but I can honestly tell you that when I look as bad as I feel others are very supportive up until I look better again.

I think that there are VERY few hypochondriacs in this world.  Be careful whom you label that way.  Maybe something is always wrong because something IS always wrong.

I am not sharing my story to shame anyone but rather to provide a glimpse of how my invisible illness has impacted my life because I am confident that you know someone with an invisible illness.  Why not sit down with them and have a frank, open discussion.  Believe what they say and act upon it.

The other reason that I have been silent is entirely my fault.  I am very much a pick yourself up and carry on type of person.  The constant push to keep going has in many ways even hid this illness from myself.  I do what I need to do to make it through the day.  I have done that for just about twenty continuous years without really take a reflective look at the emotional and spiritual aspects of being chronically ill.  Dreams have crashed and burned and I've never stuck around long enough to witness the fire.  I am starting to be prompted to change that.  Being open and honest with myself necessitates sharing with you.

I am working on the internal reason for my silence.  Will you work on the external? 

How are things with the trigger gone? (post one week)

I have definitely improved since my husband stopped using that hair product but have not yet returned completely to baseline.  I was using my inhaler at least twice a day before but am still using it as often as once a day. My energy level is almost back to normal but I am still easily overwhelmed.  I still am having to "borrow" energy from the next day to do something today.  Before I had nothing to borrow.  Yesterday I demonstrated that I am currently still quite sun sensitive as I burned after 4 pm.  Generally when in normal health for me, I can enjoy the sun before 10 am and after 3 pm.  I am having random severe itchy periods that are responding thus far to a single dose of Benadryl.

During this time I have also returned to eating a fairly normal standard american diet.  Since I was still able to consume traditional oatmeal, baking powder and other lightly gluten containing food I did try wheat again.  it turns out that I can tolerate a single serving of wheat but consuming more than one serving causes GI and skin reactions.  Thus, I am limiting my gluten consumption and mostly eating gluten free meals.  When we are traveling this summer, I will not need to strictly limit my gluten consumption as long as my symptoms remain mild.

I am consuming high histamine food thus far (mostly berries as they are in season right now) and am not seeming to react to them.  I am VERY hopeful that I'll be able to try to treat my illness with a high nutrient diet in the near future.  :)

I did add Claritin to my daily medications so some of my health improvement could be related to that antihistamine.  As mentioned, I am also taking Benadryl as needed for significant itchiness not covered by the Claritin.  Thus far those medications have not seemed to impact my nursing relationship with my son.  I wanted to make sure that I would be able to pre-treat myself with those medications to help with our upcoming traveling.  I really do not want to end up in the ER due to random exposures to perfumes, scents and personal products while we are not home.

Thank you all for your prayers and support!

A potential answer?

On Monday, May 12th, I started my third week on the low histamine diet recommended and modified by the Mastocytosis Society Canada.  Also on that day, my husband received a new leave in hair product that you apply after shampooing and conditioning and started it immediately.

Week three was not that great.  I reacted seemingly randomly and also could not add any additional food into my diet. This was a disappointment because of the improvements I experienced on week one and week two.

Two days after my week three summary, I posted that I was experiencing more intense episodes instead of a some what steadily increasing worsening of my symptoms.  I almost experienced my first (?) anaphalaxis episode just by going to a store.  My overall health was dramatically worsening and I became easily overwhelmed and fatigued.  Nothing went well in week four and my husband and I began to frantically look for a cause.  Seeing my doctor on Friday only got me a referral to an allergist and the reluctant acknowledgement that it did sound like I had a mast cell activation disorder.

Thus week five did not start off well.  After an 18th month absence my asthma came back.  The next day I saw the allergist and that appointment was basically a waste of time.  I again tested negative to environmental allergies and wheat.  My lung function at the appointment was above normal and my hives were not currently present.  I was told to come back if I got worse.  By the time I got home from the appointment, I was worse.  After week five, we decided to restart the low histamine diet to see if taking out the added foods would improve my health.

After four days back on the basic diet, I was still worsening and not having enough energy to do the diet and care for my children.  So, I went back to my normal foods with the exception of gluten.  I did start having  minor rash after one meal but that was it.  Heartburn and nausea have thus far stayed away.

Then one day I felt better in regards to energy and my ability to focus - my asthma was still hanging around. All my husband had to do was walk in the house to know that things were much better.  He then commented that he had not used that new leave in hair treatment the night before.  He stopped using it and I had several good days up until yesterday.  We had talked about the fact that maybe he could use that product before leaving the house. Unbeknownst to me he used it yesterday morning and I felt worse.  He then used it again today and I had a pretty bad day.  I told my husband this via e-mail and he let me know that he had in fact used the product in the morning for the last two days.

So, that product is trash.  It has a related shampoo and conditioner that we are not sure about.  If my asthma continues then we will likely get rid of the whole set.

It is crazy, but not unusual in the MCAD community, to have something as simple as the use of a hair product have devastating consequences.  While we don't know how long the effects of this reaction will last, we are incredibly thankful that I am no longer worsening and had improvement immediately upon stopping use of the product.

This means, of course, that a low histamine diet might potentially still be beneficial to me.  We have some traveling coming up and once we are back home we might pursue a low histamine diet transitioning to a high nutrient diet once again.  For the time being, we are just focusing on going gluten free.

Midweek Update - Yet another change of plans

My husband and I are both very frustrated.  I've done nothing but get worse over the last approximately four weeks.  If food is a really big factor for me, why am I not significantly improving now that I have not eaten anything off the diet for four days?

On 04/28/14 I listed my symptoms before starting my low histamine experiment:

For as long as I can remember I have had eczema on my hands.  The itchiness and pain would be so severe that I would sleep with ice bags on my hands so that they would be numb enough that I could sleep. Topical steroids would help for a time but I would end with a worse flare up.  Eventually I found a hand cream that helped and faithfully put a thick layer of that on every night and covered my hands with socks or gloves.  At bad times I'd put more lotion on more frequently.  I also found that red dyes and benzoates (a common food preservative) would make the eczema much worse so I avoid them.

I have been smell sensitive for as long as I can remember - natural and artificial scents make me ill ranging from headache to rash, joint pain, asthma attacks and nearly passing out.

I have had fibromyalgia for as long as I can remember.  Medications do not help and severity comes and goes but is always present.

When I turned ten, I started having asthma attacks.  This led to allergy testing.  I reacted extremely strongly to the histamine control and then either tested positive for every single test or negative for every single one.  Inconsistent results meant that I couldn't do allergy shots and was determined to not have allergies.  My asthma comes and goes and I have excellent lung capacity for an asthmatic.  I'll be attack free several years and then suddenly have to go on numerous drugs to get things under control.  Eventually I discontinue all but one drug (Singular) and have no asthma attacks.

By the time I was 12, I had severe sinus headaches and completely lost my sense of smell.  At 13 I had my first sinus surgery to remove nasal polyps and another when I was 14 to finish the first surgery.  My sense of smell did not return.  I immediately begin to make polyps post surgery.  I had the next surgery when I was 20 and the fourth when I was 30.  I then started a medicated nasal wash and now my sinuses look "great" and I can generally smell.  My sinuses feel awful.  I have continuous headaches, pressure and post nasal drip.

Eleven years of chronic fatigue started when I was 20 and lasted until I was 31.  The fatigue was so severe at times that I had to drop out of school for a semester or take a medical leave of absence from work.  In between the very bad times, I would still be continuously exhausted.  Physical exertion of any type would cause me to feel as if I was dying and I would have a very hard time getting out of bed for as many as three days afterward.  Medications did not help and my blood work was normal.  I eventually determined that I could not share laundry facilities or use fabric softener.  I discontinued that and my chronic fatigue was 100% gone immediately.  I do experience unusual fatigue during "body freak out" episodes.

When I was 29 I started having significant memory issues.  While documented, no cause has been found.

When I was 31, I started having regular bouts of acid reflux/heartburn lasting as long as eight months at a time.  When I was 33, I started having bouts of nausea lasting as long at six months at a time.  Diarrhea and constipation come and go.

I am occasionally dermatographic.  I periodically have hives lasting as long as six months.

I am generally an itchy person.

My eye lids randomly swell and turn red.

I have been sun sensitive most of my adult life, burning in as little as five minutes of sun exposure.  I can even burn outside of the hours of 10 am to 2 pm.

I am fairly ill for approximately one half of my menstrual cycle each month.  Birth control pills make it worse.

Except for the eczema on my hands, nothing is different.  My illness is moving from chronic to acute again. 

At this point, my husband and I are ready to concede that the low histamine diet is not working.  It is taking a ton of energy for me to maintain it and my energy is again in limited supply.  I'd rather spend that energy on my kids than on food preparation.

If nothing else the low histamine experiment has seemed to indicate that I am currently gluten intolerant.  I ate barley last night and have had heartburn and worsening eczema since that time.  This means that I have more than a wheat issue currently.  It is time to go truly gluten free.  Maybe the rash, heartburn and nausea will go away on a completely gluten free diet and I can cross those things of my symptoms list.

A low salicylate diet is a future possibility but not before this weekend.  My husband and I will talk about it and figure out the new plan.

Low Histamine Week Five

What should I say about my fifth week on the low histamine diet?  On Day 30, I started having asthma related symptoms and daily worsening health.  Joint pain, muscle pain, more hives, asthma attacks, bad headaches, sinus issues, woozy/pass out feelings, heartburn, etc.  After my very disappointing allergist appointment, I had some high histamine foods for a few days.  Nothing seemed to worsen except for the heartburn and the eczema rash started back on my hands.  

My husband and I came up with The Plan.  On Sunday I started a modified low histamine diet in hopes that I could return my health to the slight improvement I had over the first two weeks which would be a massive improvement from where I am now.  I will be leaving out the following low histamine foods because I seem to have reacted to them during my first try:

wheat

sunflower seeds

ice cream

coconut

I inadvertently ate spinach (high histamine) regularly starting at the beginning of the worsening of my health so I do not plan to try spinach again for awhile.  I am very hopeful that spinach caused my increasingly debilitating symptoms but it is likely to just be wishful thinking on my part.  I am leaving potatoes in at this point since they will help me to maintain my weight and also are very useful in gluten free baking.  If things are still bad, we will consider taking the potatoes out before considering the low histamine diet a complete failure.

So, week five was worse than week four.  I am almost to the point of needing to be on continuous antihistamines and adding asthma controlling inhalers.  My pain level is definitely up to at least a four each day with regular flares to five or six.  I hope to have a wonderful update a week from today.

Week Five details will be on My Low Histamine Experiment page.

P.S. Benadryl (dye free, of course) is amazing.  I will definitely be keeping that on hand for future needs.  I got a rash all over my hands and arms from weeding the flower bed - I actually didn't get it all done because the rash happened rather quickly.  I took a Benadryl at my husband's insistence and the rash was gone within about twenty minutes.  Wow! Now I know why Benadryl is such a big hit in the MCAD community.