Thursday, 21 April 2016

Baby and Mast Cell Disease: Baby is here!

Shortly after my last post, I had the baby by emergency c section. Thanks to careful planning, my triggers and reactions were managed superbly. My lungs still struggled a bit staying in the hospital environment, but considering the degree of exposures, it was amazing. I had to be wheeled outside for a fresh air break after surgery and did have an early discharge on day 2.

We welcomed a little miracle. The best moment of my entire life. I have barely slept in two weeks which would normally drive my reactions for a loop but I'm fine. Maybe it's the hormones. I'm so happy that we are safe and sound. Hooray!

Wednesday, 30 March 2016

40 weeks +1 day

Past my due date!

Thanks goodness, allergies are settling.

Thanks to taking it easy, staying away from triggers, scaling back my diet as I started overreacting to once safe foods, trying to get as many walks in and as much fresh air in as I could, focusing on good sleeps, not talking to settle throat, and limiting stress.

I was having recurrent evening hives and fairly steady throat swelling and insane full body itching. I took 25 mg of Benadryl a couple of nights which helped. I also tried 5 mg of reactine one day and it didn't seem to help, but i've been limiting meds because of the preg.

I've been 3 days without hives. Throat still flares but is settling. I at least feel that I'm in a slightly better place heading into labour.

Hoping it happens naturally and I don't go so far overdue that they want to induce me.

From here

Monday, 21 March 2016

39 weeks pregnant---Throat swelling and hives

From here

Since I tried moving into a new house, I've been having a flare of recurrent throat swelling and hives. I'm not sure how many other things in my life/environment/diet are also triggering it. Also if pregnancy hormones are affecting it. 

I am not enjoying this flare and have been having to take Benadryl when my throat starts to get out of hand. It's also making me realize how long it's been before I've had daily scary-ish symptoms. I still get daily warnings and symptoms from triggers but these ones that used to be routine have been gone for ages. Thankfully. 

I hope I'm not a swollen anaphylactic mess in labour. I was reading about angioedema in pregnancy and though this is regarding hereditary angioedema (HAE) specifically, I think similar principles would apply to other causes of angioedema (eg mcas or whatever it is I have)


A temporary increase in the number of episodes, mainly abdominal, has been observed during lactation.Prolactin levels have been found to be associated with the number of abdominal episodes suffered by these patients. The increased serum prolactin level in susceptible women could be responsible for the temporary increase in angioedema episodes observed in some females postpartum. Stopping breast-feeding altogether might decrease the frequency of angioedema episodes by causing the levels of this hormone to drop.

HAE is an unpredictable, stress-provoking, and life-threatening condition that places a huge burden on patients and their families., Individualized treatment plans created by both physician and patient can increase a patient’s health-related quality of life

Interestingly, my Prolactin is notoriously always high. 
Will keep you posted on how things go. As long as the baby is ok, I'm ok. 

The throat swelling has been off and on for a few weeks. But has felt like something "stuck in my throat" for the last few days and I can see it with a mirror if I look down my throat. I tried a dose of Benadryl at bedtime last night and it was still there in the morning but tolerable. Tonight it seemed to start worsening after supper spreading to my ear, with some heart pounding so I took another 25 mg of Benadryl and it seems to be stabilizing. Thank goodness. 

Monday, 7 March 2016

Baby on the way!

It has been ages since my last post. The biggest news is there is a miracle baby due to arrive very soon!  Pregnancy has been amazingly manageable from an allergy perspective. The first trimester, I had severe nausea and vomiting 24/7 but it improved at 15 weeks. I'm still grossed out by a lot of things but able to eat and function. My iron dropped low, so I had to find a tolerable supplement but have been able to use this mega foods blood builder supplement and take this new chapter organic prenatal vitamin. I have a great obstetric and anesthesia team that is working diligently to improve the hospital environment for me and to limit my exposures. I hope labour goes smoothly!

I am so thankful to be expecting a child. Apart from the normal new parent apprehensions, there are the implications of my altered life due to illness to consider, but I look forward to having the chance to face all of it.

Unfortunately. my jaw infection lingers and I will have to travel for treatment after the baby arrives which will be a major undertaking. But thankfully apart from daily pain, drainage, and malaise from it I've been ok. I can cope with it.

Also, I still don't have a safe place of my own to live. This continues to be the most difficult part emotionally because of how some perceive it and treat me because of it. This past week, I once again tried a new place and ended up with trouble breathing for days, hives, ongoing rashes, all things that are not good for the baby on the way. I have had to cut back my life to try and let my symptoms settle.

I am extremely frustrated with the toxic chemicals and scents in the world that prevent me from spreading my housing wings and moving on. I feel I need help, major outside help (thinking glass and steel room in the forest :) ), but there are so many like me and much worse than me who are severely sensitive and need safe housing urgently. This breaks my heart and I wish I could build a safe unit for people to escape to. I haven't given up  on finding a safe place and will continue to try. This housing struggle has really not stopped for a moment since shortly after I became ill. The pressure and judgement is enormous and makes it difficult to function normally on a daily basis.

But, I'm indoors and alive. And, looking back on the past years I've still made huge progress and am thankful for that. I'm hopeful for much more progress.

From here

Saturday, 13 June 2015

Phoenix Rising

I felt like illness took me to mere ashes once. Recurrent anaphylaxis, heart attack, near death experiences, high dose steroids, adrenal failure, POTS, wheelchairs, tests, surgery. judgement, misunderstanding, isolation, insults, homelessness, ongoing nightmares, and every part of the life I knew disintegrating before my eyes. I had to rebuild every part of my existence: sitting, standing, walking, breathing, eating, jogging, hiking. I had to learn how to exist as this "new organism" that interacts with the environment completely differently than the body I used to know. The bird in this picture is stunning. The feeling-I suspect it has- spreading it's wings is one that I've had for some moments like the following:

My first walk alone, Breathing by the ocean, finding safe clothes to wear, my first horseback ride, hiking to the top of a hill, moments of unconditional acceptance and love from some friends and family, time around animals, most new food additions, and running after recovering from gallbladder surgery. In particular my longer runs. A deep appreciation for every deep breath and positive moment. And a more acute awareness of the ubiquitous suffering in others. This feeling, in the face of judgement and those who would discourage me along the way, is a feeling of success and hope that I never experienced when life was "easy" or "as it should be."

But, as this suspected osteomyelitis of the jaw drags on, I feel what little life I had to claw back to is crumbling slowly before my eyes. Taking with it my hopes and dreams. I'm getting weaker and sicker slowly but surely and I don't know where this is headed. It takes months to get into see anyone about it and my presentation is rare and unusual so I haven't been able to find good help locally. This will require heavy, long term medications and big surgery which my system does not tend to tolerate. I just really, really hope I'll be given another opportunity to rise. And that a Phoenix can rise more than once. I look forward to my next "wings-spread' moment. 

If you find yourself in ashes, look up and see the vision of what you might become. Don't give up yet. 

Wednesday, 3 June 2015

Slow going

Food tolerances have sky rocketed. Making it much easier to exist. Very thankful.

Still struggling to get proper treatment of my jaw infection. Really hope I can get this behind me and move on someday.

Scent intolerance has improved but is still very severe.

Still struggling for a long term safe place to stay of my own. Quite a few plates spinning at the moment.

Every day is a huge battle, but just want to survive :)

Friday, 29 May 2015

I can eat Spices!

Butter chicken, Naan, Basmati rice, Homemade Raita. All organic.

After a four year hiatus, I can eat spices again! The foods I've been able to add are mind blowing in the past two months. The latest spices are:

Garam Masala
Curry Powder

No reactions! I really can't believe it. I couldn't go near the spices or even walk past a spicey restaurant without significant symptoms. But, by avoiding things until my system settled and slowly reintroducing foods one at a time, I seem to be getting some healing. Wahoo! 

I use predominantly organic splendor garden brand because they are nut free. My throat and nose reacted a  bit while I was cooking, but with a few fresh air breaks I was able to settle things. 


Tuesday, 26 May 2015

Still Struggling

Still dealing with a jaw infection. Can't believe I'm not better yet but thankful to be alive.

Amazing food progress. Have added spices, organic frozen pizza, chick peas, beans, some restaurant food, perogies,wow butter, dubliner cheese, vinegar, mustard, ketchup and more. I can't believe the food progress. So exciting.