Thursday, March 3, 2016

It's Been a Crazy Year!

I can't believe that it has been a year since I last updated my blog.  Many things have happened.

We packed up and moved at the beginning of May.  I actually had more energy for about two weeks which was a huge blessing since we had to set up a new house.  Shortly thereafter, my daughter was born by unplanned c section which really made a bad situation worse.  Even though I've been told that you can't react to injected anesthesia, I spent the next 24 hours uncontrollably vomiting.  I requested scopolamine early on and finallyrecrived it.  Within about twenty minutes after application all the vomiting stopped.

I wear my mask and add another benadryl on top of my other antihistamines whenever I leave my house.  I close up my house whenever my neighbors do laundry and take more antihistamines.  The offgassing of at least one person's laundry gives me fairly significant cognitive changes within a few minutes.  My headaches have dramatically increased in intensity which has always been my experience with routine use of antihistamines.  My allergist said that essentially I had to pick the bad headaches or anaphylaxis.  She then left the practice and moved out of state...

The c section further weakened my core strength.  I repeatedly injured my back and experienced pain as I walked in my pelvis because my muscles couldn't keep the pelvis together.  Fifteen years of chronic fatigue topped off with a c section is not a good combination.

I was a mess!  With the support of my husband I saw my primary care doctor and left with what seemed like a zillion referrals and test requests.  I'm still working through some of those.  I started and am continuing physical therapy for my core.  I'm happy to report that physical exertion no longer seems to knock me out for three days.  I received a good report for my sinuses from the ENT but no help for the constant headache, pain and post nasal drip.  All the autoimmune testing came back normal again but I'm supposed to see a rheumatologist.

My new allergist said that he thought I had a mast cell activation disorder unprompted on my first visit.  He ordered lots of tests and I tested positive for Mast Cell Activation Syndrome.  These are the tests that my last allergist said were a waste for me to have done.  :)  I'm now on gastrocom and worked up to full dose yesterday.  There might be an improvement in my sinuses already.

I have never been so happy to have a new diagnosis.  :)  This one can actually replace many of my other ones.

Gastrocom is a mast cell stabilizer.  It is not well absorbed so I am taking 200 mg (2 ampules) four times a day, 30 minutes before each meal and at bedtime.  The stomach is to be empty.  This drug can calm the mast cells all over the body so I am quite excited to see what this drug can do for me.  I follow up with my allergist at the end of the month.

So, the last two months I've had the gumption to start over my medical care and this time things are improving.  I have hope once again for a better tomorrow.  The Lord told both my husband and I that this would be a better, different year for us and 2016 has started right off in that direction.

Tuesday, March 3, 2015

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.

Thursday, February 19, 2015

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
General itchiness
Extreme fatigue
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):

Tuesday, February 10, 2015

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:

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.