Sunday, December 24, 2017

Progressive Isolation...Christmas Eve alone

Well, writing a blog post on Christmas eve is a bit unconventional. I've certainly never spent a Christmas Eve home alone. The rest of my family is all at church services or family gatherings. It's a hard pill to swallow that the only way to stay safe is to stay home alone. The degree of suffering for attempting to attend any of those events is way too much.

Thanksgiving was a bit of a disaster, even though my mom's side of the family tried so hard to make me comfortable. Every little thing was planned. Everyone went to great lengths to de-scent themselves. There was no cooking done. No strongly scented foods. Not at all a traditional Thanksgiving meal. But I was having a full-fledged reaction before we even arrived. I reacted to my husband's body wash, which was unscented, but still problematic for me (probably the botanical oils in there--not really fragrance free!). I was in and out of consciousness on the car ride over. I collapsed in mom's driveway. I was basically carried into the house, where I took a Benadryl, and waited for the reaction to ease up while being almost completely passed out for nearly an hour. It was a rough start, and it just got worse. I started developing a severe migraine with the associated neurological symptoms as soon as more people arrived. I had to go upstairs to my safe bedroom, and stay there the remainder of the night. My facial pain reached a 9 that evening, along with vertigo, nausea, lack of balance, and weakness. I remained sick for at least a weak, while also being even more sensitized to other triggers.

So, that is how I've ended up alone for Christmas Eve. For Christmas day, we have new plans. Everyone will still de-scent as best as they can. The food will still not be cooked in the house, or strongly scented. But I will spend the whole time up in the bedroom. We will Skype as much as we can. We'll try to play a game. My hubby will bring my food and gifts upstairs to me. It should be safe. Fingers crossed!

The past couple of months have been very emotional for me. A lot of total breakdowns. And major emotional breakdowns are really hard on my body, too. They usually trigger migraines and insomnia.

I've developed reactions to new things, or just identified more triggers. It's hard to say.

-I react to the smell of even more foods. Pretty much anything seasoned is problematic. My husband ate a cold tuna sandwich, and I had to hide in the bedroom with my chest burning for 2 hours. I also developed bladder cramping and facial pain that night. Other symptoms continued for a few days.

-I reacted to the smell of old coffee grounds. They were 3 days old. I developed an instant migraine upon entering the apartment, facial pain level 8, vertigo, nausea, tingling body, severe light sensitivity, burning chest, my tongue felt swollen, slurred speech, and aphasia. It was nuts how severe the reaction was to an undetectable scent that I wasn't even aware was there. I stayed sick for days, but also had more exposures in the following days.

-Pharmacies have continued to make my life difficult by changing the manufacturer of my generic medications. I now have 3 Rx meds that I have identified a brand that I can tolerate and a brand that makes me incredibly sick. There is no real indication yet of what inactive ingredient I may be reacting to, besides red dyes. There are still some unknown culprits. The symptoms to the wrong brand of the same medication usually include: insomnia, diarrhea, itching, bladder pain, facial pain, headaches, low blood pressure, and GI bloating. They tend to pass in a few days, but it can take time to identify the cause and access the right brand again. I go to 3 different pharmacies currently to get my safe brands of meds. It requires a lot of phone calls each month to make sure the brand I need is ordered in time. It is a huge hassle, and a real challenge with brain fog.

-I'm still reacting to weather changes, especially barometric pressure changes. I don't just react with a migraine anymore. I frequently get a whole mast cell cascade of symptoms, with chest burning, nausea, swelling, vertigo, itching, insomnia, and more. This has been nearly constant the last couple of months.

-I've started reacting to the smell of rubber-backed doormats. I've only recently identified this as a problem, so we're still trying to find a good replacement. I suspect this smell has been bothering me for a long time, but I've only recently identified it. (I used to think it was gas of some sort.)

-If my sleep is interrupted, I'll be sick all day.

-We had our apartment's smoke alarm go off. The fire department came and identified a burning plastic pipe in the laundry room. Luckily, we were able to duct tape up our door, so nothing got inside. But that could have been disastrous.

-I barely, barely, burned some carrots in the microwave. The tiny hint of smoke created sent my head pain to a level 9, again, along with burning in my chest and abdominal pain.

-At this point, I react to being around anyone that doesn't lead an unscented life. So many scents hang around. I react to second hand exposures to fragrances. So if Gustavo comes home from his mom's house or the pharmacy, he has to change clothes, because the scent is now on him. If my mom comes home from a concert, she was around scented people and got hugged by scented people, so she is now scented. The other huge issue is laundry products. My sensitivity is so severe, probably because I am exposed to it most times that I step outside every day (laundry vent exhaust in our apartment complex). For the last 6 months, we have not been able to wash our laundry in our apartment's laundry machines. Even though we use unscented products, the machines usually have scented products in them. So the residue comes off onto our clothing, making it unsafe. So, I assume this is a problem for anyone that has a shared machine and anyone that even occasionally uses scented products in the laundry. This particular issue has made the isolation so severe. Because even if a person follows a perfect unscented protocol, they will still smell like Tide or Gain or Bounty to me, and I will still react severely. Highlighting this so those that are skimming can better understand why I can't have visitors anymore.

With all of these reactions, I haven't trialed new medicines, and I haven't seen any new doctors. I just needed a break from that. But not much of a break, because I'm still constantly reacting to things. My "good days" have been decreased to a couple of good hours a week. Daily symptoms include headaches, facial pain, heart rate and blood pressure changes, severe brain fog, random eye abrasions upon waking, unpredictable insomnia, and GI problems. I am so grateful I no longer have pain level 7 or above on an average day. And I am so grateful that I get enough sleep more nights than not. I truly believe the reason this has improved is my attempted avoidance of all triggers, especially environmental ones. But daily symptoms are still severe enough that I dread every day.

I tend to suffer from brain fog most of the time, to the point that I feel mostly numb or I'm vaguely aware of depression. But whenever I am feeling more clear-headed, I start to feel very emotional, and end up crying uncontrollably.

It's been a year and a half so far that I have been progressively housebound. Now, I can be around 3 safe people and I have 2 safe environments. (Technically, there are a few more safe people, but they live in Boston!) I still have about 12 tolerable foods. But I am very lucky I still have those things. But I continue to decline and become more sensitive. It is crushing my spirit. I am so grateful for what I have, but frequently mourn for all I have lost and continue to lose. And I fear for my future.

I have a few other random thoughts. It is amazing how much lack of understanding and disbelief from doctors can damage your psyche. I have never been the same since that started. Certain incidents still flashback in my mind, 15-20 years later. And I still have a wariness/hostility toward a lot of doctors. I try not to. But this whole nightmare of MCAS progressing and not being diagnosed for years, and still not finding viable treatment has made it all so much worse.

I also have some ideas to share with anyone that has EDS and POTS, but not yet MCAS. Or has mild MCAS or suspected MCAS. Or anyone newly diagnosed with MCAS. Things I wish I had known:

Get ready to be your own lab rat. No one will have the answers for you. Your body's reactions will guide you to your safer lifestyle, if you pay attention for long enough. Of course, doctors can help with trialing medications and some general lifestyle recommendations. But most of us have to figure out the how to live part on our own. What to eat, which medicines (including the manufacturer) have more positives than negatives, what environmental changes would be helpful. Support groups are soooo helpful for getting ideas of what to try or what might be hurting you. But only you can figure out what will work for you.

A good place to start is limiting the number of chemicals and ingredients you are exposed to in daily life. In food, medication, personal products, and cleaning products. Keep your routine as simple as possible. Fragrance free is a great place to start. Natural and organic are not always safer with mast cells. A low histamine diet is another good place to start, but again, you'll have to learn for yourself what actually helps and hurts you. It could be salicylates or oxylates or FODMAPS or dairy or gluten, or anything really. (E.g. You may need to eat mostly meat or you may never be able to eat meat.)

Also, don't waste years with doctors that aren't well-informed about MCAS. They will just be lost years where you continue to progress.

I would also try to avoid trauma and surgery as much as anyone can. Nothing has progressed my disease like surgeries and inpatient stays. It's hard to say if I regret surgery, because the fact is, my life is no longer in danger from a destabilized skull/spine. But I certainly wish I could have been well fused 15 years ago when I had my first brain surgery, instead of it taking multiple traumatic surgeries over the course of a decade. Who knows what shape I would be in now?

Finally, it can be hard to read about so many miraculous recoveries, and then what worked for someone else didn't work for you. Most people will improve. Some very quickly, others in time. Some will be able to live close to a normal life. Others will become housebound. We don't all find the miracle combination that gives us some version of our life back. But we have to keep trying.

Well, I don't know what the point of writing was today. Other than loneliness, and needing to get out some thoughts that have been wandering around my oxygen-deprived brain. It's hard to wish for a Merry Christmas. The fact is, many will have a very merry Christmas. Others will still be sick and in pain and severely limited in what they can do. It is hard to see people celebrating with their families, with their children, making cookies, doing all the things I used to look forward to every year. Tonight, I am watching Netflix alone, like I do most of the time. Hopefully, letting out the negativity tonight will make me less likely to be cranky tomorrow.

I am very grateful that some people still care about me, even though I can't see them. I am grateful that I have a few people that have changed their lifestyles completely so that I don't have to be alone all the time. I am so grateful for my little Wilma. I think she is an irreplaceable companion (that lets me sleep until noon without making a peep and likes to be a couch potato all day with me...and is also hypoallergenic!). I am grateful for sleep, although not so much when it gives me corneal abrasions, like today. I often wish I just didn't exist anymore. But since I have to exist, I am glad I am not all alone yet.

Thank you for reading and caring.