Transparency: What were the last four weeks really like?

When you've been living with a chronic illness for essentially your whole life you get very skilled at hiding your illness even from those whom are close to you.  Over the past several months and one of the main reasons I started this blog was because God told me it was no longer ok to hide my illness from others.  So once again, I am opening up what it means to be me with every person who wants to know, and likely those who really don't want to know.

Let me share with you what the last several weeks have been like. There are have been many, many lows but by my being honest with myself and with others I have been abundantly blessed.

As I have shared things started to get rough about three to four weeks ago.  All of my baseline symptoms dramatically increased and I became so sensitive that I started wearing a carbon filtering face make when out in public.I wish that I could say that the mask has solved all my problems but my baseline symptoms are all still significantly elevated.

Two weeks ago I was still just pushing through everything.  I asked for specific prayer and many were faithful to pray for me.  However, for three straight days I borrowed from the future heavily to maintain a clean house despite raising three small children, to not just care for my three children five and under but also homeschool them and then have dinner ready everyday when my husband got home.  Normally all this is about all I can handle anyway but I am also having a flare of symptoms and am in my second trimester.  After those three days, I was barely able to function for the next four.  On day two of my recovery I cried and had a discussion with my husband about the fact that I could no longer do all these things.  On day three I spent the ENTIRE day in bed and day four I spent most of the day in bed.  I then had to have a very low key entire week to finish recovering.  So, THREE days cost me the ELEVEN following days.

My husband and I agreed that my first priority was to care for and homeschool my children.  Everything else would be secondary and only what I had the energy to address.  In vulnerability I reached out to my small group and they have been wonderful.  Not only have they believed that I am ill right now, but they are willing to address my expressed needs.  It has been hard to welcome them into my mess but very rarely have I been blessed so abundantly.

Just to cement this all in, God in his mercy, gave me a cold that wiped me flat for two days.  He reminded me that things could be so much worse and that He wants me to make good choices now so that I can build into my future.  So much of the world's advice is to live today for all its worth with no concern for tomorrow and I simply can not live my life that way.  Today I must choose right so that I can spend tomorrow with my family.  When I choose poorly my whole family suffers.

The Lord has also further restored my hope for the future in that I now have an appointment with a doctor who treats people with a Mast Cell Activation Disorder on March 20th.  I have been looking for such a doctor for more than two decades.

The Worldwide Debut of Me in a Mask

I received my I Can Breathe Sport Mask yesterday.  Since I am fragrance sensitive I hand washed the mask and exhale values with soap to which I am not sensitive.  They air dried overnight and were ready to go this morning.  It was very simple to put the values into the carbon filter and then attach the carbon filter to the interior of the mask.

I wore the mask to my moms group this morning and it went really well.  My group of moms was very supportive and had even skipped things like showering and using perfumed items on my behalf.  We do eat breakfast together so I couldn't wear the mask while eating or drinking; otherwise I wore it.  Those at the group who didn't know me really just ignored the mask.  I could tell that they maybe looked twice but that was it.

The mask does make me breathe a little heavier since it takes a bit more work to pull air through the mask and carbon filter.  I don't think it was noticeable to anyone else.  The wonderful news is that the mask did diminish my reactions.  I did have an asthma attack and maybe a few hives but both were minor and probably were caused by what I inhaled while eating and not wearing the mask.

I'm not sure that I have shared what reactions I am currently experiencing when I go to a store or am in public.  I'll list them here in no particular order:

Asthma attacks

Hives

General itchiness

Extreme fatigue

Flushing

Headaches 

Nasal congestion and runny nose 

Joint pain 

Nearly passing out

Swelling of tongue/lips/throat

Memory/language issues

I do not necessarily experience all of these symptoms when I go out.  Something always happens and usually isn't singular.  Symptoms generally escalate even if I immediately return home and can last a few days.

This all returned quite suddenly about two weeks ago.  While my baseline symptoms had increased when I was about five weeks pregnant, my overall sensitivity to other people's personal care products and whatever is randomly in the air at stores was at the same time greatly diminished.

A new symptom in the last week is an irrational feeling of being overwhelmed.  Having never really experienced this as a symptom before I'm a bit at a loss as to what is going on and have just been pushing through it.  I am seeing an endocrinologist for the first time on Monday and will mention this to him.

And here is what you have all been waiting for!  A picture of me in a mask, looking quite tired and experiencing swollen top eyelids (they are common for me once again):

You might soon spot me wearing a mask

Since I stopped the Quercetin between the eleventh and twelfth week of pregnancy things have continued to worsen. Right now I am about 24 weeks pregnant.  Everything with the baby is going well and we currently have no concerns regarding development..

I am having escalating reactions every time I leave my house again.  I am experiencing severe headaches, sore throats, nasal swelling and itchiness.  For the remainder of the day, I am exhausted and feel very overwhelmed. Currently, I am still on the max dose of Diclegis for morning sickness and it contains the Class A antihistamine doxylamine succinate.  The instructions state not to take any additional antihistamines while taking Diclegis so I am not sure what medication I can safely take when I leave my house.  I have had to take Benadryl a few times.

I did send my midwife an email but I do not really expect her to know what to do.  Since I obviously don't want to hurt myself or the baby with medication or anaphylaxis, I am looking at buying a high quality mask to wear when I leave my house.  The two that I am most interested in are:

http://www.vogmask.com/

http://icanbreathe.com/store/index.html

Does it shock you that enough people have environmental, fragrance and chemical sensitivities that numerous companies sell reusable masks with carbon filters?    Are people like me the canaries in the coal mine and soon nearly all of us will be wearing masks because our air quality is so poor?

I would like to add that I have zero conventional allergies and these reaction don't occur when I am outdoors away from people.  Reactions above my baseline symptoms occur indoors or when I am with a group of other people who have put some sort of fragranced product on their bodies or clothes.  I actually am unable to live in an apartment or a building with doors opening into a common area.  I absolutely can not share laundry machines with another family.  I have to wash clothes given to my family as many as ten times before the leftover fragrances stop making me ill.  Some things I have to toss or give away.

This illness is an isolating one and my natural tendencies are toward withdrawal  There are some specific ways that you can pray for me regarding this:

1.  Pray that I would have discernment to know when I can handle exposure and when it would be too much.  Pray that fear and the desire to withdraw would not play into my decisions.

2.  Pray that I would have the courage to wear a mask even though others will likely react negatively to it.

What was Quercetin Doing for Me?

I have joyful news.  I am currently pregnant and expecting our fourth child.  As with my first child, many of my major symptoms of MCAD were greatly diminished once my severe nausea began.  I did not improve with my second or third child so this is a very unexpected blessing.  I have been able to stop taking all of the Claritin, Ranitidine and Benadryl that I had started in the last few months as my MCAD entered "body freak out mode."

At first I stayed on the 2400 mg of quercetin that I started six plus months ago  However, since the effects of quercetin on a developing baby are unknown, I stopped taking the quercetin after breakfast on November 16th between the eleventh and twelfth week of pregnancy.  My midwife could not find a lot of information on pregnancy and quercetin so I made the decision to stop.  So what happened?  I tracked above current baseline symptoms for a few days to see what impact this would have on my body.  Previously when I had stopped quercetin for 24+ hours, I had increased problems with word recall while speaking, increased spelling issues and had a hard time remembering people's names.  During those times, however, I was not pregnant so I may not have those symptoms reappear at this time.

November 16

8:30 am: took 800 mg quercetin

12:30 pm: did not take quercetin with lunch

6:00 pm: Itchiness (eyebrows and legs).  Did not take quercetin with dinner

9:00 pm: Restless.

November 17

9 am: Inexplicably tired.  I slept the normal amount of time last night and do not have any sort of communicable illness.

12:30 pm: Restless and itchy still.

1:30 pm: Took a nap and am still very tired.

9:30 pm: Some word stumbles.  Had to concentrate on the words.

November 18

Itchy.

Back pain.  I do have an old back injury but why is it flaring now?

Short term memory decreasing.

Just felt sick.

Worsening rash on face.

November 19

Sense of smell significantly diminished, perhaps by 50%.

Itchy with some hives at the end of the day.

Rash still there on face.

November 20

Awful headache (could be due to less sleep than normal)

Still itchy.

Sense of smell still significantly reduced.  No signs of a virus, etc. 

Digestive track distress

Bad day.

November 21

Still reduced smell

Digestive track distress

November 22

Fatigue.

Still reduced smell.

Bad headache (could just be the weather change)

Rash on face so bad I put steroids on it (not supposed to do this!)

November 23

Fatigue

Still Reduced Smell

Rash on face still present

Now it is January 4th, 2015.  I am now over 18 weeks pregnant.  The severe headaches, and decreased smells have continued.  My baseline continuous headache is now always at least a four and often a six.  I have increased my medicated sinus wash to twice a day which has not yet seemed to help.  The bleeding in my sinuses which started several weeks ago, though, is responding to the increased steroid.

The memory and word recall issues have continued.  This is not surprising since I noticed that the brain related stuff were the first symptoms which improved.  The rash on my face greatly improved with the steroid cream and now I can keep it relatively controlled by putting coconut oil on it at least twice a day.  My hands are definitively more reactive now so I have to put lotion on them every time I wash my hands.

I think it is safe to say that Quercetin was doing quite a bit for me.  I plan to take it again as soon as possible, but it is not recommended to take while breastfeeding.  I do plan to breastfeed my fourth child so will have to at least wait until my little one is mostly on solids before starting this again.

I hope that everyone had a wonderful Holiday season and wish you all a Happy New Year!