I developed a new sensitivity in late January. Basically, the smell of almost anything cooking brings on devastating, torturous symptoms. In particular, I develop that severe burning sensation throughout my torso. It starts in my chest, but then fills my torso. It feels like my insides are on fire. It is very intense, and lasts at least a whole day. It's accompanied by intense agitation and insomnia. I've come to understand that this is, of course, a symptom of mast cell activation. Some patients refer to it as masto-burn. It's like the common symptom of facial flushing and burning, but internal. Of course, I have another invisible, but extreme and intolerable, symptom.
I originally got the burning last June, after a week of steroids, while in the hospital for migraine, and was treated with strong IV medications. Then, I continued to get this symptom when I was on the Indomethacin for my facial pain. Then, I developed it again during the suspected serotonin syndrome episode in November. Maybe, it was mast cells all along.
I have also developed other sensitivities, including NSAIDS, Tylenol, Relpax, Prevacid, Nexium, and Gas-X. Basically, all of my as needed medications, I can no longer tolerate. I have had to go without treating most problems that come up in a day. The burning torso is just too intense. I have to avoid it at all costs. And the cost is very high when I can no longer treat so much pain.
I also discontinued my vitamins and supplements. Because I'm just so desperate to make sure I'm avoiding anything contributing to the burning.
Finally, I've recently discovered that I no longer tolerate eggs. Severe GI bloating and cramping seem to be caused by eating a single egg. I don't get much protein at all, and my diet is so restricted right now, so this is another big loss.
The progression of all of these sensitivities has been really discouraging. Especially since I'm on the medication that should be helping prevent this. It's just not enough, I guess.
So, I became aware of an allergy/immunology doctor at Rush that treats MCAS. Unfortunately, when I finally worked up the courage to contact her office, it was a big let down. She greatly restricts the number of MCAS patients she is willing to treat. And she won't see me at this time. I can try to get together documentation and get further testing done, but it will be a huge project. Why do I have so many conditions that doctors are unwilling to treat? It's nuts. My awesome POTS doctor is currently not taking new POTS patients. I'm very lucky I got in with him when I did. There is a huge list of geneticists/rheumatologists that have blacklisted EDS patients. And now MCAS specialists that are unwilling to take on new MCAS patients. It's just so hard to be so unsupported and so alone in managing these conditions. I guess I have to keep seeing my current allergist, because at least he is willing to try things with me (although we haven't managed to make it through an appointment without him infantalizing and condescending to me yet--I always leave crying.) But I should try to get him to order new testing, since the last testing was totally mismanaged.
I did see Dr. Barboi, who I'll now be seeing only yearly, due to his schedule. He basically wanted me to hold everything for now, and wait to see if things calm down. He is worried that getting off of the Cymbalta has destabilized my autonomic nervous system. We are hoping that things will calm down in a month or two. But I'm not sure he's acknowledging how much the mast cells are interfering, and the fact that my reaction to Cymbalta could have been caused by my mast cells, meaning I really can't go back on it.
Being off of my vitamins and supplements has impacted my frequency of headaches and migraines. I really believe the vitamin B2 and Butterbur were helping a lot. But I just can't take anything extra right now. So headaches seem to be daily again. That's getting really exhausting. If I get back to a point where I feel stable, I will try the vitamin B2 again, first, to try to reduce the headaches.
My daily life has certainly been impacted by all of this. I've been able to move back home! I think the biggest difference is the weekly vacuuming my husband has really committed to. With very old carpeting, I just can't handle the dustiness. It upsets my whole system. My diet is even more restricted. And the inability to cook in the house is so limiting. I love to let in fresh air from outside, but we have to be so careful that no one smokes near our window, and to close the place up whenever there is grilling smoke in the air. Because that smoky air that comes with fair weather just about kills me. I get the same bronchospasm and throat closing that I did in high school that was called "asthma," but we now know is from mast cells.
My diet is down to this:
Joe's O's with almond milk
Whole grain graham crackers with peanut butter
Quinoa pasta (made at my mom's house-I can't even be around boiling anymore.)
Carrots and Broccoli, steamed in the microwave
Asparagus or green beans, steamed in the microwave
Grapes
Potato or corn chips
Rice Krispie treats
I may try cooking sweet potatoes in the microwave, to mix things up. I miss my daily egg! (Although microwaved egg was pretty gross.)
I still occasionally get some type of chicken from a restaurant, but I've had some questionable reactions, so I'm not sure how well I tolerate it. I believe it has to do with the freshness of the chicken, which determines the histamine level in the chicken.
So, I spend my days alone with my little Wilma. I try to care for myself and for her. I get both of us food. I take her outside several times a day. I keep myself entertained with television, my ipad, books on my kindle, and my phone. I haven't really been coloring. I have very little physical or mental energy. And most of the time, I suffer. I know it sounds like boredom would be a huge problem for me. But it's not. Loneliness? Of course. I have almost no contact with the outside world, outside of Facebook. We haven't really worked out visitors yet, with my progressing sensitivities. But boredom is just not something I contend with. Most of the time, I am dealing with severe symptoms, and I am suffering. I am desperately trying to figure out what is causing my current misery. But I'm not bored. When it's not one symptom, it's definitely another. If I get a break from the itching and burning and insomnia, I am plagued with reduced consciousness, severe facial pain, or migraines. There is no break. When symptoms are on the mild side, I honestly just try to let my body relax and recover from the constant assaults. So, I'm sure my daily routine would bore most people, but not me.
I am still so relieved that I can basically care for myself. Home health care would be expensive, and add an intruder into my safe space. And I just can't handle that. It's hard enough to keep my home scent-free as it is.
I need to arrange a trip to the dentist and a trip to the optometrist soon. The dentist, because my EDS gums are receding, and my teeth hurt often. (Although actually getting dental work done with no pain killers available would be horrible.) The optometrist, because glasses give me headaches, so I need a renewed contact prescription. I don't know how either one will happen, when I can't go anywhere without triggering a major reaction.
Emotionally, I'm struggling. The depression is hard to live with, as usual. I have deteriorated to the point that most days are a fight to maintain my will to live. It feels like all I have to give at times. At least I'm still here. I'm still going through my days. I have not abandoned my loved ones. That feels like all I have to offer. But I sure wish I had more to offer. I wish I had more to share.
I found this Quality of Life Scale by the American Chronic Pain Association:
Quality Of Life Scale
A Measure Of Function
For People With Pain
0 Stay in bed all day
Feel hopeless and helpless
about life
1 Stay in bed at least half the day
Have no contact with outside world
2 Get out of bed but don’t get dressed
Stay at home all day
3 Get dressed in the morning
Minimal activities at home
Contact with friends via phone, email
4 Do simple chores around the house
Minimal activities outside of home two
days a week
5 Struggle but fulfill daily home
responsibilities
No outside activity
Not able to work/volunteer
6 Work/volunteer limited hours
Take part in limited social activities
on weekends
7 Work/volunteer for a few hours daily
Can
be active at least five hours a day
Can
make plans to do simple activities
on weekends
8 Work/volunteer for at least six hours daily
Have energy to make plans for one evening
social activity during the week
Active on weekends
9 Work/volunteer/be active eight hours daily
Take part in family life
Outside social activities limited
10 Go to work/volunteer each day
Normal daily activities each day
Have a social life outside of work
Take an active part in family life
According to this scale, my current quality of life is 1-2 on average. I'm not sure what can be done to improve this. I'm doing what I can.
There are still more mast cell medications to try, but not a lot. A supplement called Quercetin. An out-of-the-country prescription called Ketotifen. Some risky injections called Xolair. And eventually, chemotherapy. But I don't have a mast cell specialist to help me try these. And I'm so afraid I won't tolerate anything new.
Finally, I would not be surviving all of this if it weren't for my mom and stepdad making their home a safe space for me, as well as my husband accommodating my needs at home. I am no fun to live with with all of my sensitivities. Light, sound, smells, cooking, extra pads and cushions on every seat. I need a million accommodations just to be less miserable. And I am very lucky that I have two safe households to choose from, in case anything goes wrong in one of them. I am so grateful to these three people for allowing me to limit their lives so much. And I'm also grateful for my little Wilma for being my constant companion, no matter which home I'm in.
