Tuesday, February 21, 2017

Another Progression

I need to update more regularly, because my foggy brain can't keep track of even small developments. But I'll do my best to remember.

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.

Sunday, January 8, 2017

How to Go Fragrance Free

......And be able to visit me!!!


Okay, I have a few updates. Then, I'll be describing which products are safe for me, and how someone would need to be unscented enough to visit with me.

The holidays were pretty sad for me. I mostly had to visit with people through Skype. There are so few people with whom I can share a room anymore. I also had laryngitis and bronchitis for a few weeks, so I was sicker than usual, and my mast cells were really irritated, so I was needing extra Benadryl around the clock.

I stayed at my mom's house through all of December, since our apartment was still triggering a major reaction.

Earlier this week, I saw my supposed mast cell doctor (allergist/immunologist). His office is supposed to be fragrance free. But they have started using an air freshener spray in the waiting room and the bathroom. They also have air purifiers in each room, but none of them are turned on. So, his office is no longer safe for me. I had to wait in the car for an hour and a half before my appointment. The appointment was not very productive. He doesn't seem to be treating me for mast cell disease anymore. He didn't seem to remember any of the medications that he is prescribing me, including the mast cell stabilizer. He did recommend I try the supplement CoQ10, but that is more likely to help fatigue and pain than allergies or environmental sensitivities. So, I feel like he's given up on actually helping my mast cell activation. I appreciate that he wants to improve my quality of life, but it seems that I really need more of a mast cell specialist. I'll be looking into getting in with a doctor at Rush next. Although, I'm still afraid of going inside a doctor's office, since they are all so scented.

The same day as the appointment, I finally moved back home. It was a little earlier than I wanted to, but the house cleaner used scented products at my mom's house, so we had to move me out abruptly. Coming home was difficult, because something in the air was still problematic. After having bronchitis, my airway still seems to be very reactive, so I developed a persistent cough at home. (Reactive airways are common in mast cell patients.)

Yesterday, we had the carpet steamers come by to try to reduce the amount of dust in our carpeting and in our newly inherited 30-year old couch. We made sure they didn't use any scented products. Initially, it made things worse, because it pulled all the dirt and dust out and into the air (It also smelled really bad.) So, last night was pretty miserable. But, today, now that the dust has settled, it seems to be easier to breathe in here. It's hard to say for sure, as there are so many factors contributing to my state at any one time, but I believe the air is clearer. We also bought a dust mite encasement for the couch, so any dust inside will stay inside. We also bought a new heavy-duty air purifier, so we have one in each main room of our house. Next on the list will be mattress encasements, but I'm putting it off for now, since I seem more comfortable in the bedroom. (It would be a good idea, since both of our mattresses are 12 years old at this point.)

Okay, onto the list of products I use that do not trigger a reaction! I know you're excited!

I am not guaranteeing that anything on my "safe list" will be safe for anyone else with chemical sensitivities, or that I will not become reactive to these in the future. These are just the ones that work for me today. The disease tends to be progressive, so this list may get shorter with time.

Also, I seek out the most affordable products that I can tolerate, not necessarily the most natural or safest products on the market.

I get asked all the time about cleaning products. Most people know there are free and clear laundry detergents. We usually go with Tide, because it seems effective at getting out smells, but All and Seventh Generation work, too. This one is the Target brand, which is usually the best price:

http://www.target.com/p/-/A-13186521

I don't use any fabric softener, because it is just a major irritant for me.

Here is the dish soap we use, which is the Target brand:
http://www.target.com/p/-/A-16600501
Seventh Generation also makes a free & clear dish soap. This one is okay for me, too. And dish soap also makes a good general all-purpose cleaner around the house. Anywhere you want suds in your cleaning, dish soap is a good solution.

For general cleaning, I use the seventh generation brand. They make an "all purpose natural cleaner," as well as a "glass and surface natural cleaner." These are the only ones I know of that do NOT contain essential oils, which are super problematic for me. I use these for most of my cleaning:

http://www.target.com/p/-/A-15172078
http://www.target.com/p/seventh-generation-natural-glass-and-surface-cleaner-free-clear-32-oz/-/A-14694505

For dusting, I just use a lightly dampened cloth. Apparently, that's safest for those with dust allergies.

For hardcore cleaning, I'm still experimenting on what works best. I'd like to try this product for our shower:
http://www.natlallergy.com/tub-tile-cleaner-32-oz-spray-bottle.html

I think that's most of the cleaning products. (Obviously, I don't have the energy to keep a perfectly clean home, but these are the products I use when I can clean!)

Personal products can be really tricky, too.

A good example is unscented deodorant. "Unscented" deodorant is usually NOT fragrance free. Here's two good examples, that I used for a while, before I became too sensitive:


But as you see on the ingredients list, both of these products contain fragrance!

So, I've switched to this Almay brand, which I've only been able to find online:


It says "fragrance free," not "unscented," and so it actually contains no fragrance. This is true for most products. Unscented is not enough! This deodorant literally smells like nothing. If someone else were wearing the Sure deodorant, I probably wouldn't notice, because it contains very little scent. But this may not always be true for me.

Another one I have to order online is hair products. Regular stores just don't sell unscented hair products. I have used several brands. I don't love them as much as I used to love my "traditional" scented shampoos, but at least several brands are acceptable for me.

Right now, I have the ones by Free and Clear. They also sell hair sprays and gels, as well as various other fragrance free personal products.
https://www.amazon.com/Free-Clear-Set-Shampoo-12-Conditioner-12/dp/B00164E8TI/ref=sr_1_1_s_it?s=beauty&ie=UTF8&qid=1483932525&sr=1-1&keywords=Free+and+Clear

Some pharmacies will order this brand for you.

But there are other choices. Sometimes, I just look for the best price. Desert Essence makes a decent FF (fragrance free) shampoo and conditioner:
https://www.amazon.com/Desert-Essence-Organic-Shampoo-Fragrance/dp/B0019GZCYI?th=1
https://www.amazon.com/Desert-Essence-Conditioner-Fragrance-Free/dp/B0017QSW92?th=1

There are others, but these are the ones I use the most. Jason and Earth Science are two other brands that make FF shampoo and conditioner. Available on Amazon or Walgreens online.

I know you can also find FF products at Whole Foods, but I can't shop there anymore, due to the essential oils in the air. (Reminder: essential oils may be more natural, but they are still very dangerous for me!!!)

Body wash is so much easier. The Target brand makes a liquid body wash:

It's generic for Aveeno Active Naturals Skin Relief Body Wash.
http://www.target.com/p/daily-moisturizing-body-wash-18-oz/-/A-14044281

I use this soap for hand soap, too. I've even gone crazy and tried it as shampoo, and it's not bad. I know that sounds nuts, but the ingredients are pretty similar to a mild shampoo. And it is much cheaper and easier to find than actual FF shampoos.

There's also Dove sensitive skin beauty bar, which is fragrance free. I've gone a little crazy and tried this for washing my hair, too. It will also work in a pinch.

So, you could literally wash head to toe in either of these, and end up clean and fragrance free. It would be cheap and easily accessible for anyone that can get to Target.

*****If someone is normally heavily scented (from products in their home, at their work, on their clothes, or any exposure to cigarettes), they may need to use an odor-removing wash, which is often used by hunters. This is an example:
https://www.amazon.com/Hunters-Specialties-Scent-Liquid-Shampoo/dp/B0132U0UK4/ref=sr_1_3?ie=UTF8&qid=1483937044&sr=8-3&keywords=scent+away
This is also an easy all-in-one solution.

If someone's clothes are normally strongly scented, especially if they usually use fabric softener, they may need to use an odor-removing detergent like this one:
https://www.amazon.com/Hunters-Specialties-Odorless-Scent-Detergent/dp/B0132U0VOE/ref=dp_ob_title_sports

BUT, even if a person were to wash their clothes in FF detergent, not use fabric softener, and use only FF personal products on the day they see me, I can still have a major reaction. This seems to be due to residual scents. Our hair, skin, and clothes are so absorbent. They hold on to fragrances. So, if you usually use any type of scented product (natural or artificial!) in your house or in your daily life, it will probably be stuck on you. I also know that vapor from e-cigarettes are a huge problem for me, as well as regular cigarette smoke (which has been a problem for me forever).  ***Another reminder that products with essential oils or diffused essential oils are a major trigger for me!

The best way around this that I can think of is storing clothes in an air-tight bag immediately after washing in FF detergent. Ziploc Big Bags should work for this:

You can get them at Target and Walmart.

Then, you would just need to be freshly showered with FF products, and put on the unscented clothes that have been sealed in the bag before seeing me. And then not be exposed to any new scents/vapors/essential oils/etc. on the way to seeing me.

I am absolutely not asking anyone in my life to go to all of this trouble. This is my problem, not theirs. I would like to try to maintain my current relationships through texts, calls, Skype, etc. Especially Skype, which really helped me to "participate" in holiday gatherings. No, it wasn't the same. But it was better than nothing.

This is just for people in my life that would like to have an in-person relationship, and are willing/able to go to all of this trouble in order to visit with me.

My fear is that even with all of this, I'll still have a reaction, which happens so often. My head will start spinning, I'll get suddenly congested, or I'll start having palpitations. The cascade of symptoms will follow, ending with my days of severe facial pain and exhaustion. And I have a serious problem with speaking up when an exposure has happened. If the scent is really noticeable, I've gotten better at quickly fleeing the situation. But for scents that more gradually seep into my system, I'm terrible at being assertive. Especially when I know that someone has really tried to come unscented. (See: Very British Problems)

And honestly, even though our home is full of safe products, we still have to run two air purifiers on high all day in order for me to be somewhat comfortable. I think it's just an older space with older furnishings. So, I'm not sure how I will ever be able to go anywhere outside my safe spaces, like other people's home or stores. I have had some success eating out. If the people I'm with are unscented, and the restaurant isn't crowded, I can sometimes survive. Most restaurants want you to be able to smell the delicious food, not numb your senses with added scents. But, if something in the kitchen burns, or someone scented sits down near me, I'm out.

***Reminder: essential oils are huge on my list of triggers. I have serious reactions and cannot tolerate being near them, even if it is just residual scent on hair or clothes.

Anyway, I thought I should lay out what it seems like might work to help me to be less isolated. Feel free to ask if you have any questions. Thank you for caring enough to read my updates. I still need to work on staying in touch with people. I just still don't have anything interesting to share with people. Dealing with all of this has been my life for at least a year now. This life is not getting easier, but I'm still here.

Thursday, December 15, 2016

Ready for my bubble now

I don't want this post to sound as negative as the last one. So, I'll include the positives first:

Cymbalta withdrawal is lessening, I think. The biggest thing that has stopped is the jolts/shocks/startles/zaps. Whatever you call them, they are miserable, and they are mostly gone.

In addition to this, I have had a lot less days with classic migraines. There is a chance my elevated serotonin levels were contributing to the frequency of my migraines. It's just a theory, but I'm holding onto hope that that's really what's happening. Of course, it's hard to be hopeful when I currently have a migraine with a pretty high pain level.

Unfortunately, I really don't have anything else good to report. Despite the lack of migraines, my facial pain has still been severe many days, so not really any better than a migraine. Maybe worse, because I can't treat it. (Well, I try Tylenol + Benadryl, but it is hard to tell if it does much. Maybe, it lessens the pain by 1-2 points on the pain scale.

What has progressed even further is my chemical reactions. It didn't feel like that would be possible, but rationally, I know mast cell disease can progress much, much further. I am aware of people that become allergic to water, anything that has ever touched plastic, and other people's body odor. So I knew it was possible to be more sensitive. I just didn't think it would be me, you know? Thank goodness, I'm not that far along, but I see the progression happening quickly. Where smaller and smaller exposures trigger more extreme and longer lasting reactions. Where it feels like you're always basically in a state of reaction to something.

My fear is becoming confined to a room, a "safe space," and having very few people that do not trigger reactions allowed in the room with me. I'm getting closer and closer to this every day.

Mast cell disease is often mild until exacerbated by trauma or stress. I have had symptoms of mast cell disease probably since birth. I had a major reaction to breast milk as an infant, as well as dairy milk. In high school, I developed what was called "asthma" to exercise and cigarettes. Now, I understand this was most likely anaphylaxis from a mast cell reaction. It makes so much more sense, looking back, since the inhalers never helped, but the shot of epinephrine from the EMTs always did. Then, I have gotten worse after each major surgery or trauma in my life. I developed new chemical sensitivities over time. This Cymbalta withdrawal is just the most recent of the many stressors on my body that seems to have progressed my mast cell disease.

I have major reactions to the smell of cooking now. I try to boil and steam most things. But it's hard to live with me due to this restriction. (It's also hard to be me-because I enjoy cooking and baking and making things taste good!) We also don't have a hood vent over our range, so there is no easy way to ventilate the kitchen.

Exposures that would have only caused me temporary discomfort previously now cause me major reactions that are multi-systemic. Example: I smell some scented laundry detergent for a few seconds, I end up having a full day of itchiness, sinus pressure, vertigo, facial pain, and diarrhea. I also sometimes get swelling in my eyes and lips, usually not right away, but by the next morning.

I had a crazy reaction to being in Whole Foods for less than three minutes. The smell of essential oils was very strong in the air. Ever since then, I cannot tolerate even the tiniest exposure to a scented oil. My head starts spinning instantly, followed by my sinuses filling and all the rest.

Beyond the reaction itself, every single exposure seems to lead to greater sensitivity. The only way to avoid the ever-increasing hypersensitivity is strict avoidance of anything that triggers a response. The more recent your last reaction, the more primed you are to react to the next tiny exposure. Your tolerance lowers, and your mast cells are on edge, ready to burst their contents all over again.

I now have multiple unscented products that cause severe reactions, including unscented Febreze and unscented fabric softeners. And sometimes, it's a mystery trigger. I know there is something, probably on someone's clothing, that is triggering me, but I don't know what it is. That's when I guess it's one of these unscented products.

Currently, I've been living at my mom's house again for almost a month. First, she was helping me through the withdrawal. But I tried to move back home, and ran into a new problem. I'm allergic to our heat. We have baseboard radiators, and I finally figured out that these were triggering a reaction, after spending 2 1/2 days basically manic. So, my husband and I spent a night doing a major cleaning. Over the year(s), the radiators collect a disgusting amount of dust. So, every time the heat cycles on, the dust gets burned off into the air. Even after a thorough cleaning, there's still a distinct smell of burning dust when the heat is on. So for now, we're running the heaters on high while I stay at mom's house to try to get rid of the rest of the dust.

I am completely exhausted and pretty terrified at what this progression means for my life.

I am hoping to be able to move back home soon, but who knows when I'll be able to tolerate it?

I also have no idea if the withdrawal is over. Is my current state of depression with frequent crying just my personality now? Is it just my remaining mood disorder, now that I am mostly untreated?

I'm still trying to figure out what to do about a new psychiatrist. My current one will no longer take my insurance, and I've also now had a major reaction to being in his office. I'm looking into doctors that offer phone and Skype appointments, but my insurance won't cover any of them. I'm not sure there is much of an option though, and my mental health does need some management, even if it can't come from SSRIs or SNRIs anymore.

I don't know how I can go into another doctor's office ever again at this point. Which is a pretty dangerous place for me to be in.

I'm going to share a few embarrassing pictures of mast cell reactions. I don't getting the usual flushing, but I do have allergic edema, with swelling of my face, sometimes swelling my eyes shut. It's not as severe as some edema, but it is a visible sign of my mast cell reaction and my facial pain.




I honestly have a ton more to write about in my head, but I'll save it for the next post. Thank you for reading and for the support. I'm so sorry I haven't gotten back to people that have reached out. I want to reach out, but I fear that I have nothing to say that isn't about my illness. I think I have nothing to contribute to the world but my illness experience. I barely even exist outside of my illness experience lately. I'll try to do better. But I am almost always either in a crisis or in a total fog, recovering from the last crisis. Maybe days like today, it's a little of both. Dealing with migraine pain that started last night, but also in a total fog.

Thursday, December 1, 2016

Really, really long November Crisis: Serotonin and Withdrawal



Life is feeling utterly hopeless for me. My body was not made to tolerate this earth. I don't see a way out of this misery - the misery that has gone on for much of the last five years...and really - a lot of the last 15 years as well (since my Chiari symptoms began). I could even go as far back as 6th grade, if I'm being honest. When the depression and generalized pain and sickness began.


The current saga started November 9th, I think. I woke up with another hemiplegic migraine (the kind that looks like a stroke). It didn't last too long (maybe 2 hours), so I just went on with my day. Yes. This is actually the type of thing you can get used to. Unfortunately the standard 1-3 day migraines became frequent after that. The 12th-13th, a new one the 13th-14th. Again on the 16th and the 18th. The days in between had more generalized facial pain, but not true migraines, as far as I understand.


I saw my migraine specialist on the 16th. She gave me the lovely news that "We are running out of options." And she gave me a referral to a pain management office, where they can do more invasive treatments (that are bound to make me worse, since everything else seems to). I got the helpful diagnosis of "atypical facial pain," associated with my frequent migraines and chemical sensitivities.


I left the office feeling like I've already been through this letdown...because I have. I've had three doctors that are board certified in headache medicine give up on me. Dr. Semenov did send me home with a script for Gabapentin to try, as I requested. Unfortunately, I haven't been able to try it yet.


Because my serotonin levels were already elevated by that day. I had to use a triptan 3 times in 5 days. That, in addition to my other daily serotonergic medications, was too much for my body to take. By the 16th, my serotonin was too high, as indicated by the milder symptoms of elevated serotonin I was already experiencing. (These include low fever, feeling of burning up inside, agitation, restlessness, elevated vitals, and more frequent bms. In fact, I had discontinued my daily Miralax and my Midodrine to accommodate the change.)


And I may have been okay, if it weren't for the huge weather change on the 18th. As many people across the country experienced, it turned from early fall to winter overnight. A temperature drop of 50 degrees in Illinois. The head pain was beyond unbearable. If I could see any way around it, I wouldn't have taken anything for it, since I knew I was in a vulnerable state. But I truly could not handle the pain. I took my Relpax (the 4th dose in 7 days), and prepared for the worst.


Unfortunately, my fears were completely right. As the pain started easing, my serotonin levels soared. How do I know, when there is no way to reliably test serotonin levels, or diagnose serotonin syndrome? Well, I've been through it four times before, and it is quite predictable. Within an hour of taking the serotonergic medication that puts me over the edge, I develop a fever, intense burning throughout my torso, high blood pressure, racing heart, twitching, agitation, restlessness, and diarrhea. It is similar to other types of episodes (especially mast cell ones), but the fever and burning insides really stand out as specific to this problem. And they come on very quickly. Also, they are very predictably based on the number of serotonergic medications I've had to take.


Since then, I have been in hell. The only safe way to deal with high serotonin levels is to immediately withdraw all serotonergic medications. For me, this includes Cymbalta, Remeron, triptans, Flexeril, and Zofran.


As soon as I started skipping doses of my anti-depressants, I began experiencing symptoms of withdrawal, which can feel similar to the serotonin problem itself.


I'll try to sum up each day since then, as so much has happened.


November 19: No anti-depressants. Developed symptoms of withdrawal (diarrhea, restlessness, extreme sadness, huge temperature swings, tachycardia, brain zaps, body zaps, heart startles/shocks, and sudden vertigo/blaring ears). I also developed another migraine this day. My pain absolutely hit what I want to call a 10 for a couple of hours, and I wasn't allowed to take any medication for it. All I could do was moan and rock. Any sane person would go to the ER, but I knew I wasn't allowed anything for it, so I just rode it out.


November 20: No anti-depressants. Withdrawal persisted. BP very low now (85/55 after Midodrine and salt tablets). I was unable to sleep again this night due to withdrawal symptoms.


November 21: Tried a 1/2 dose of Cymbalta, at the recommendation of my psychiatrist, due to extreme emotionality/suicidal ideation. Unfortunately, I developed mild symptoms of raised serotonin, including a fever and twitching. In addition, this day, I contracted Norovirus, along with many other family members. Symptoms were very hard to sort out this day, because I became very dehydrated. During the night, I had a pounding heart and found my blood pressure to be 68/38.


November 22: No anti-depressants. Standard withdrawal symptoms. Heart rate was 100-120 most of the day. Had another sleepless night.


November 23: Nausea, flushing, sobbing, deeply depressed, suicidal ideation and panic. Tried a 1/2 dose of Cymbalta again. Within an hour, the burning and twitching started, along with the fever returning. This was officially my last try at Cymbalta.


November 24: Woke up with extreme panic/nausea and tachycardia again, from the restless nights and withdrawal. Developed a migraine with pain level 8, which I treated with Tylenol + Benadryl. Panic, depression, restlessness, insomnia, suicidal thoughts. Continued withdrawal.


November 25: Continued withdrawal. Migraine persisted all day at an 8. Moodiness, crying, suicidal ideation again. Appetite slightly improved, but I was still easily eating sub 800 calories per day. Developing a problem of hypomania at bedtime.


November 26: Still withdrawal. Barely slept. Awoke with heart rate 120 and extreme emotionality/suicidality. Struggled to stay conscious for much of the day. Fainted many times, no balance, many falls. Withdrawal and POTS were severe all day. Hypomania again at bedtime.


November 27: Continued withdrawal and no meds. Very low blood pressure day and persisting of all symptoms of withdrawal, including severe heart startles/shocks/head spins. Hypomanic in the evening again.


November 28: Usual withdrawal with low heart rate and blood pressure. Head pain increased from sobbing and the weather. Passed out constantly--every few minutes for several hours. Suicidal ideation while awake. Became hypomanic in the evening. Since my BP had normalized, I was able to exercise for 45 minutes. It was very painful, and there is not a lot I can do, but at least I tried. Became very hypomanic. This was the first night I took a 1/4 dose of Remeron. It did help with the withdrawal symptoms and sleep, but only lasted a few hours. In my notes, it says that I was exposed to a scent this day, but I don't remember which scent. Maybe a hair product. Facial pain did increase as a result.


November 29: I had an appointment with my psychiatrist, which I clearly needed. It was a pretty distressing appointment for several reasons. He told me that I will not be able to restart Cymbalta, and must endure the withdrawal as long as it lasts. He allowed me to try the 1/4 dose of Remeron, for now. But in the future, he's considering Lithium or Lamictal-something that will not raise my serotonin significantly. He also strongly recommended therapy. Therapy is just so tricky for me, because I have so much trouble going anywhere, due to scents. And I have a lot of sick days when I would have to cancel. He also mentioned looking into TMS therapy (transcranial magnetic stimulation) and ECT (electro-convulsive therapy). This is how I know my future psychiatric treatment looks bleak.


The main problem with this appointment was that the office was strongly scented. Even wearing my mask, I have been suffering greatly due to the scent. I'm not sure how I can go back to the office, although I'll be due for a follow-up in three weeks to reevaluate.


Finally, today, November 30: I had a brief exposure to essential oils in a Whole Foods (ironically, I was there to buy a specialty fragrance free product). The scent knocked me down so hard. I had been unsure if natural fragrances like this were a trigger, but clearly, at least some of them are. The pain is intense, as well as severe vertigo and nausea.


Unfortunately, as I have experienced before, the pain from a scent exposure gets significantly worse in the following 24-48 hours. And since I had already had a reaction yesterday, this could be even more prolonged. I no longer have any plans to go anywhere or do anything until I can get the facial pain back to baseline. I expect pain levels 6-9 for a while. Also, with my scent reactions, my eyelids have started swelling, especially the following day.


The withdrawal symptoms have lessened, but my emotional state is still extremely unstable. I break down and sob many times a day. Things that can make me cry to think about:


*everything that I have missed out on in life

*everything that I will miss out on in life

*what I could have been

*what my life could have been

*the level of suffering I have been through

*the amount of suffering I am guaranteed to go through for the duration of my life


[I have sobbed at Gilmore Girls and Christmas music. Gilmore Girls, because I related to Rory as a teen, and I will never achieve anything I thought I would. Christmas music, because there is reason to be joyful in this world. There are things to look forward to, but not for me.]


And honestly, none of these feelings are new. But being on the appropriate doses of my anti-depressants left me mostly accepting and numb to the pain. Without them, I feel the loss and the grief almost constantly.


But I understand that I will not be able to stay on these medications that help me maintain my mental well-being. Because it puts me at the top of my serotonin threshold. So, any migraine or pain medication can put me over the top into a dangerous place, as serotonin syndrome is life-threatening.


How will I live with so much emotional pain? Why must it be this way? Why can't I find a treatment for my physical pain either? I know it seems trite, but it is not fair. The tiny moments of life that I get to enjoy are few and far between. The rest is suffering. How could it be worth it?


I wish I could escape this personal hell. I wish there were a way out.


For now, I have to just lay low and wait for my body to find a new baseline, without treatment for my depression or my physical pain. Once I reach that baseline, I can try to prioritize what to try to deal with next:


*my joint instability and pain that is causing such reduced mobility, including my feet

*my POTS symptoms, which can only really be managed with exercise (Unfortunately, cardiovascular exercise is very difficult to achieve with my lack of mobility and high pain levels.)

*my emotional state-maybe I will try therapy or TMS at some point in the future.

*my chemical sensitivities--I have no real idea how to deal with this one. It seems to be a limitation I will have to accept/adapt.


In general, if I want to make contact with the outside world, I need to make sure that everyone is completely unscented, which is almost impossible to achieve. Fragrance free products are not always readily available, and usually more expensive. Especially hair products, for some reason, which have to be purchased online. Fragrance free detergents are readily available, but all fabric softener is basically the devil to me. Even skipping perfumes and colognes is very difficult for some people, as they are such a natural part of life.


Some unscented products I recommend:

Free and Clear Shampoo, Conditioner, and Hair Spray

Aveeno makes an unscented body wash

Dove makes an unscented bar of body soap

Free and clear laundry detergent, various brands

No fabric softeners or air fresheners of any kind

No personal scents


I've learned that even unscented products can emit harmful VOCs that may contribute to my overall ill health, but honestly, you can only do so much.


All scented products linger on clothes, skin, and hair. So if you use these products in your home, they will still bother me when I come into contact with you. See why I haven't been participating in social events all year?


I have no idea who would read all of this, but I am grateful that anyone still cares about my tiny little existence that has so little impact on the world.


Sorry for the tone of this. The depression of withdrawal is very intense.


I'll update sometime in December, when at least the withdrawal symptoms should have settled down a bit.

































Monday, November 14, 2016

Getting very isolated

I've been dealing with plenty of medical problems in the last few months, as usual. I've been dealing with a lot of pain and am not coping too well, emotionally.

I use anti-histamines, mast cell stabilizers, and various masks. They reduce my allergic-type reactions to an extent. But nothing prevents or treats the facial pain, which lasts days or weeks after an exposure. The scent can be perfume, lotion, scented hair products, fabric softener, strongly-scented detergents, air fresheners, scented candles, smoke residue, or a million other things, it seems, that contain these irritants. I'm to the point where I rarely leave the apartment, and I have to be careful with anyone coming into our home.



I am so used to being stuck at home a lot, being sick, being in pain, and doing it all alone 95% of the time. None of that is new to me. It's been 14 years since my first surgery, 13 years since I got my first wheelchair. It is my life. But this fragrance problem is so isolating, so frustrating, and causes me so much pain.

I have multiple diagnoses that contribute to this problem, but no one can exactly say how it got to this point. The chronic migraines were certainly the start of the pain. And it is not unusual for migraines to be triggered by scents. Then, the fact that my migraines became so frequent and often intractable made it worse. The nerves in my face got irritated by the regular high pain levels from the migraines. Then, after my surgery in 2013, my chemical sensitivities got stronger. The biggest reaction was to the hardwood floor varnish in our old apartment (the one where we had to break the lease, because I never could stay there.) Ever since that, the sensitivity to fragrances has gotten stronger and stronger. And the nerves in my face stay irritated most of the time. They often hurt for no reason (like this past weekend). And my face is usually in agony with weather changes.

When I'm exposed to an irritant, the pressure in my sinuses starts immediately. I get a sinus headache and fill with mucous right away. Gradually, the pressure increases into a sharp pain through my trigeminal nerves. It used to be primarily the left one, but currently, it can be either side, or both. I also start to feel like I want to crawl out of my skin, and I feel desperate to escape. I can't think about anything else but avoiding severe pain from starting. I often cry in relief when I can get away.

And staying in a scented environment for more than a minute will increase my pain levels and sensitivity to migraine triggers for weeks.  An example is that I stood in Wilma's vet's office for about 10 minutes last Thursday. The air freshener smell was strong, but I needed to get her prescription food. I wore my mask, and tried to breathe through my shirt for another level of protection. It wasn't enough. By the time I got outside, I started crying. I knew I'd irritated the nerves. My pain level was through the roof all weekend, and everything had to be canceled. No plans. Forget about my to-do list. I couldn't do anything. And I had to just stay at home and suffer, mostly alone. The horrible thing is, Wilma's food wasn't there, so I need to go back into the office tomorrow again. I don't know how I'll do it.

So, I need to find Wilma a new vet. Even though I love her current vet, I can't tolerate the office. I've also been putting off my dental cleaning appointment, because I don't know how I can be in an office that long.

I tried to attend a wedding last month, but barely survived just the ceremony sitting in the back of the church, away from people. The are many events I have to miss and invitations I have to turn down.
I won't be attending holiday gatherings this year, because people's homes are full of scents. Cleaning supplies, air fresheners, scented candles, personal products, etc. It's a minefield for me. And unfortunately, even if the home were to switch over to unscented products in the week before the gathering, these types of smells linger. They literally absorb into the furniture, the carpets, the walls. These household fragrances are so potent, and made to be stronger and last longer. Downy unstoppables, Gain long-lasting detergent, Glade plug-ins, Yankee candles. They all have long lasting effects on a home. Making so many homes off-limits for me.

Even in my own home, I often find the need to ventilate quickly, by opening the windows and blasting the fans and the air purifier. I'm very lucky we found me a new car that is not scented! As even after 4 months, my husband's new car is still too scented for me.

In stores, scent marketing is big business. Each store has a signature scent which is pumped through the air vents. Seriously. This is why most stores are out of the question for me. Kohl's and Bed Bath and Beyond are major offenders. I can't return to them. I can survive Target if I wear a mask near the entrance and near the laundry/fragrance aisles. Walgreens is becoming too much for me to take.

Oh well. It's not like I've been well enough to work, so I don't have any extra money to spend anyway. I buy most of the essentials online. But it just makes me even more isolated. And some trips are necessary.

I hate that I'm terrified to go anywhere or be around people.

But from what I've heard, chemical sensitivities have the potential to improve, after you have avoided all irritants for a long enough period of time. I'm just not sure this is possible. Even the smell of cooking can be an irritant. I take Wilma outside and there is often cigarette smoke or laundry exhaust in the air. The neighbors may be painting. So much is just unavoidable.

I'm seeing my migraine neurologist this week. She also specializes in facial nerve pain. So, I'm sure I'll be trying something new this week. Most likely is Gabapentin. The other option may be Tegretol. I have tried Gabapentin years ago, but my pain is a lot different now, so it's certainly worth trying. I absolutely do not want to take any new medications, but I don't think I really have a choice right now.

Looking ahead, if these medications fail to help my problem, or if I can't tolerate them, there are few things left to try. Migraine medications help my migraines, but not my nerve pain (which I admit, even I can't always tell apart.) Botox made my nerve pain worse. My dysautonomia specialist doesn't think I'll tolerate anything invasive. I do terribly with steroids, and they also don't seem to help this pain. So nerve blocks are out. Nerve ablation also seems unlikely to be tolerated.

If it gets to that point, I'll look more into medical cannabis and low-dose Naltrexone. I could always try occasional opiate therapy again, only when the pain is at its worst. But of course, these prescriptions are hard to come by these days. And I have an annoying reaction to opiates, where it acts like a stimulant, so I have trouble resting and sleep is impossible.

Other symptoms I've been dealing with:

My joints are trouble, as usual. But my hip pain became so severe that I had to give up biking completely! Now that I haven't biked in two months, my hip and sacrum pain is almost completely gone. So, yay! I'm avoiding long-term joint damage. But, of course, without that regular form of exercise, my leg muscles are shriveling away, and my POTS is harder to manage. I haven't really figured out a solution yet.

I've been considering physical therapy for a long time. Especially with the new EDS PT manual available, and a recommendation for an excellent physical therapist near me. The main problem with this is that I have trouble getting out of the house, trouble getting to the hospital, and even more trouble being reliable for multiple appointments per week. I would need to cancel at the last minute at least half the time, due to severe pain or other symptoms. Also, my body is injured by so many seemingly simple movements, I'm just not sure if a regimented protocol could work for me. Perhaps if I just work through the chapters on my own, using skills from years spent in PT. (It's not recommended to do this, of course.)
        {For those who have asked, the PT manual is here: https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880}

Walking was such a great form of exercise for me for years, until my feet gave up on me. They became totally disabling. The custom orthotics and compression socks in supportive sneakers only help so much. They keep me able to walk around my apartment, but don't allow for extra walking. (I still need to use my wheelchair to get around a store, or my feet become too painful to walk around the rest of the day.)

Then, the recumbent bike was an even more perfect form of exercise for me. At least 3 days per week, I could get on and ride for 15-45 minutes, depending on the day, and work up a good sweat. My heart was in good condition, and my legs were strong. This worked out so well, until the hip and sacrum pain became too disabling.

I also have very problematic knees. The tibiofibular joints are completely unstable, popping out every time I bend down. So squatting is no longer an option. Even simple bridges are too much of a strain. I have to wear knee compression, plus side stabilizing knee braces all the time now.

So, I'm trying to figure out what's next. I'm pretty sure I'm going to do a free trial at a local gym that also has a pool. Swimming can be tricky. Actual swimming is hard on the shoulders, and no good with a rigid neck. So water walking and gentle exercises are okay, but it's hard to really get the workout you need. Also, I'm not sure how I'll handle the chlorine, as I haven't been in a pool since my sensitivities worsened. I have had trouble in the past with warm water pools, as they lower blood pressure. But at the gym, I can also experiment with different exercise machines, and see if anything works for me. Maybe a rower, or an elliptical. But those can be hard on different joints, too, although they are low impact. I have to try, right?

I'm still doing some very basic exercises at home. Ones I've learned over my years in PT. But only the ones which don't cause further pain, which is really tricky. And I know I need to be doing so much more.

So, thanks for checking in with me. I hope I won't have to miss out on all of the holiday festivities.

Saturday, August 27, 2016

When it's not one thing, it's another!

So, I got to be strapped to a table and treated like a lab rat a couple weeks ago.

I completed the autonomic testing with Dr. Barboi. It was pretty horrible! Going without my medications for 24 hours was the hardest part. I could barely be upright or stay conscious during that time, and I was absolutely miserable. My medications clearly make a huge difference in my quality of life and level of functioning.

The testing had 4 parts, all terrible for me in their own way. None of these tests would even feel like a strain on a healthy person, but they definitely showed my body's weaknesses.

First was the QSART sweat test. They applied a solution to several spots on my skin, then sent a low level of electricity to them. It was rather painful for me, but ended up being the easiest of the tests.

Next, we did a deep breathing test. You just take slow deep breaths for a couple of minutes, and they watch how your vitals react. I learned many years ago that I can't do any type of controlled breathing- for meditation or yoga- or I pass out. And that's what happened! Even though I was lying down, I came in and out of consciousness a few times. To be fair, I was nearly passed out before this test, so it didn't take much.

After that was the valsalva test. I had to exhale really hard for 15 seconds through a tube. Unfortunately, this action triggered my hemicrania facial pain to spike to a level 10. It really didn't come back down to below an 8 the rest of that day. Any type of exertion or straining triggers my pain, so this was absolutely horrible for me. I cried in pain for a bit afterward.

But, we weren't done yet! Finally was the tilt table test. I've had two TTTs before, which confirmed my diagnosis of POTS. So I knew what to expect. I was strapped to the table and tilted up to an almost upright position. Then, I just had to wait there while they watched my body's reaction. I got my usual hot flashes, nausea, vertigo, and lightheadedness. Luckily, this only went on for about 7-8 minutes before Dr. Barboi said he had seen all he needed.

I was then able to take my medication and drink water to help me recover. I felt significantly improved after a short time, although still pretty out of it and in severe pain. They wheeled me into the next room for my consultation with the doctor. He said the testing showed that I have another new diagnosis. Seriously!?! I was correct that at some point, my POTS has evolved into Hyperadrenergic POTS.

My basic understanding of the condition is this: I still have trouble with vasoconstriction, thanks to my stretchy EDS blood vessels. So, I still have problems pumping oxygen to my brain a lot of the time. But my body has started over-reacting to this problem with a surge of sympathetic activity. Epinephrine and norepinephrine are released. My body goes into fight-or-flight mode, causing heart rate and blood pressure elevation, hot flashes, enlarged pupils, tremors, shortness of breath, anxiety, and headache.

There are any number of triggers for this hyperadrenergic state; mainly being upright, exertion, stress, and any change my body has to cope with. This has been a major problem for me since my surgery in 2013. Any trauma or change in my medication or routine cause me to have trouble.

So, I'm not surprised to have a new diagnosis, and I always like to have an explanation for my symptoms. I also like when the testing proves my self-diagnosis correct. But, I am a bit exasperated to have another rare diagnosis to add to the list.

This definitely explains why I feel incredibly anxious the day after a restless night. My body really relies on quality sleep to maintain homeostasis. It also probably explains my body's reaction to new medications and dosage changes recently.

My well-being is a very delicate thing, and I get thrown off very easily. This is generally a lifelong condition, and can be progressive.

For treatment, we are starting with a new medication to manage my postural tachycardia- Ivabradine. We're starting with a small dose, so we don't overwhelm my system. Unfortunately, my insurance would not cover this medication (No surprise. It's fairly new in the US, and only approved to treat heart failure.) After looking into patient assistance programs, it became clear I needed to order it internationally. It's been ordered, but will take some time to arrive. I expect to be able to try it out in the next couple of weeks.

The doctor had other treatment ideas for me to try in the future, including adjusting my psychotropic medications. I'm pretty reluctant to try this, since I know my mental health is quite delicate as well, but I'm sure I will try it sometime when I feel stable enough.

With so many rare diagnoses, I'm always dealing with a number of problems. I never know when I wake up each day which symptoms will give me the most trouble.

My head has finally given me a little break from the relentless pain. I still have an ongoing low level headache with lots of sensitivities that trigger more severe pain, but it hasn't been my most prominent symptom most days. I'm very grateful for the break! It just doesn't always feel like one. My body never really gives me a break!

Currently, I'm dealing with a major mast cell reaction to a couple of mosquito bites. I've had to take two different extra anti-histamines every 2-3 hours just to not scratch all of my skin off. It has definitely interfered with my sleep.

I am constantly trying to avoid exposure to mast cell triggers. Mosquitoes would be a great one to avoid! But also all types of scents, smoke, and fumes. I have a new mask that definitely helps a bit. But still have to avoid known triggers.

I've also been having various joint problems. The most difficult one has been my shoulders, which don't want to stay in the socket. I've been experimenting with different mattress toppers to try to find something that allows me to lie on my sides to sleep. I'm waiting for a new, 4 inch memory foam mattress topper to try to help.

I've also had the usual pain in my knees, feet, and hips. Today, my right knee is the worst, but it could be something else tomorrow. I've also had a lot of pain in my hands, and some trouble with my spine and sacrum. I have a wide variety of braces that help a bit to wear as needed. I also have to be surrounded by pillows for support most of the time.

I had a flare up in my brain fog and trouble staying conscious for about a week. I had gotten a bit busy and neglected my biking a bit, which always has a major effect on how alert I feel. I've gotten back on track this week. It's just difficult, because I can't usually exercise on days that I have other things planned. So, I have to schedule several days off each week, and sometimes miss out on things in order to exercise.

I've had a couple of days where my digestive symptoms were most prominent.

It is all so frustrating. And it really is true that it's always something. So next time, instead of asking, "How are you doing?" you may as well ask, "what's giving you the most trouble today?"

At least when I'm not having too many other problems, I'm actually sleeping at night, and I don't feel too anxious or depressed most of the time. I know that this can and will change again, but I'm enjoying the relative peace, for now.

Wednesday, August 3, 2016

Surviving, often reluctantly

I think I have a lot to update on since last month.

Unfortunately, I had to discontinue the Indomethacin before I could reach the full daily dose. I had another adverse reaction. The kind where my chest starts burning, then it spreads throughout my torso. It's really intense, and Zantac and Tums don't seem to help it. It is still probably a GI reaction, but nothing seems to prevent it. And it is such a strong reaction that I'll do pretty much anything to avoid it.

So, I probably have the chronic headache condition called hemicrania continua, but I can't treat it. Great, right?

I've had daily head pain every day, made worse by varying triggers like scents, storms, lack of sleep, and exertion. I've pretty much been afraid to take any medication for it. My pain level has been between a 4 and a 7 most days, with some 8s. I am very grateful it hasn't been an 8 every day though. I've returned to about 3 distinct migraine days per week. Although, every day feels like I'm on the verge of a migraine. So, I never know when it will actually turn into one. My hemicrania pain is on the left side. My definite, throbbing migraines are on the right side. And some days, it just hurts all over, and I can't tease apart the different layers of headache.

I also had my appointment with Dr. Barboi last week! I was in a major flare the day I was there. I pretty much fainted while checking in, and my blood pressure was very low throughout the appointment. Dr. Barboi is wonderful. I don't know if there's much that can be improved upon in my current management of my illness, but he's going to try to help. But before he tries anything, he'd like to do a day of autonomic testing, including a tilt table test (my third). He wants to confirm that my current diagnosis for my autonomic problems is correct, so he has a good idea how my system is malfunctioning. I'm not sure it even behaves the same way every day. I have times where I seem to have a lot of hyperadrenergic symptoms with a lot of high numbers, and other times where my numbers are always really low. But I do acknowledge that the testing makes sense.

The big challenge of this testing is that you are supposed to discontinue all medication for 5 days prior to the test. He knew this would be too traumatic for my system, so he's allowing me to stop most medications only the day before and the day of the test. Even this will be a real challenge for me. I will definitely get sicker and get increased pain for at least a week afterwards. So, I'm really dreading it.

But it is really nice that doctor Barboi is close to home, and an expert in these problems. I'm so grateful he's willing to treat me and help manage things. It's also really nice that he seems to understand my body's strange over-reactions to stress and to medications. He said he could have predicted my DHE reaction, as well as the Indomethacin reaction. So, next time I want to try a new medication or treatment for one of my issues, I will definitely check with him first, to see if it's even worth trying!

Other than all of that, life has been a challenge this summer. Various things have been going wrong. Our cars both broke down the same week. Our air conditioner leaked and got the carpet in the bedroom moldy. This has triggered my allergies/mast cell symptoms to be worse, and I haven't figured out how to deal with it yet! Finally, we got a new car, and I'm allergic to the interior. My guess is that they polished the leather seats with something really smelly that I can't tolerate. I got a new mask, so I have to wear that in the car, even with the windows down the whole time. And even doing that, I'm pretty miserable in the car, so I'm avoiding our only mode of transportation, when possible. These stupid reactions are beyond frustrating, for both me and my husband, to deal with.

I haven't had to work much, so that's been nice, with all of this going on. I'm trying to get back into a routine where I get dressed every day, exercise regularly, keep the apartment neat, and actually get to the things on my to do list. It hasn't happened yet. I really haven't dealt with the insurance denial for my hospital bill yet, but it's on the list!

I'm mostly still in survival mode this whole summer. We did have a mini trip to Lake Geneva with family last weekend. It was really challenging, but a lot of fun, too! We're also hoping to plan a trip to Boston soon to meet my brand new little nephew, Lincoln!

Thanks so much for reading and following my progress. And thank you to all of my family and supporters.

I'll post again as soon as I can after my testing next week.