Wednesday, May 11, 2016

Two Months on Full Dose Gastrocom

I have now been on full dose gastrocom/cromolyn sodium for about two months and things are improving.  :)  It is very nice to stop the accelerated worsening I've had over the last several years.

The first thing I noticed was a lessening of the severity of my headaches.  I still have a constant headache but it spends more time in the three range now instead of the four/five range of the last year.  Next, my sense of smell improved.  I noted this when I was surprised by the smell of ground black pepper.  Apparently I hadn't smelled that in so long that I forgot that it had a smell.  My spice cabinet apparently smells when I open it, too.

My gastrointestinal system then improved with less extremes and much less nausea.  Additionally, for the majority of my life I had no appetite and was never satiated/full.  I ate because I needed to do so but apart from crashing blood sugar levels was never self prompted to eat.  The antihistamines I started over a year ago had given me a regular appetite which was an improvement but I still never felt full.  Now with the gastrocom added I actually feel satiated as well.  It is something of a foreign sensation but I'm excited to now eat when hungry and stop when full.

In the last few weeks I have also noted that my fragrance sensitivity might be improving.  Normally, even with premedicating with additional medication (benadryl which is a rescue medication for me) and a face mask I feel worse for the remainder of the day and up to three additional days after being among lots of other people.  I forgot to premedicate before church three weeks ago and did not feel worse for the remainder of the day.  The next week I did premedicate and still did not feel worse after church.  This last week I did not premedicate and did not feel worse after church.  It would be a wonderful blessing for my fragrance sensitivity to continue to improve.

I have noted, however, that I am more reactive during the second half of my menstrual cycle and am back to getting fairly ill the first week of my cycle.  I am also experiencing "an excessive inflammatory response to ovulation" for up to five days which started four months ago. I may have to go on medication to regulate that but have thus far responded poorly to artificial hormones.

In other news, I graduated from physical therapy for my core and am doing much better in regards to pelvic movement and recurring low back injuries.  Next up is tackling my moderate to severe neck and upper back pain.

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):