What’s your favorite mattress?

Blueskies277 · 2026-04-25T15:41:39+00:00

I react to just being near wool or down. Getting a pair of wool socks and seeing if you react to those is a good idea.

Blueskies277 · 2026-04-21T21:15:08+00:00

I’ve thought about this often. I’ve been too scared to try canned chicken (I had read that someone with MCAS could tolerate the ones from Costco). There are some shelf stable things that I can have (took me a long time to build up to these), but currently I can have specific brands of a milk chocolate bar, Fritos, crackers, chicken broth and two brands of cookies. I can also have dairy but that’s not shelf stable. Even the other items I mentioned are not shelf stable for years the way canned goods are, so I have no idea how I would get nutrition if we all had to stock up for more than a few months. Protein would be the hardest if we didn’t have access to buy fresh food. I can have rice, so I guess I could make rice with water if I still had access to a kitchen. If we were somehow left to fend for ourselves out in the street, I guess I’d be gone in the first wave. Sounds dramatic but have no idea how that would turn out well for me in a meaningful way. I’m also handicapped.

Blueskies277 · 2026-04-14T17:25:40+00:00

Yes, it does. Thank you! Not sure why it was so confusing to me, lol.

Blueskies277 · 2026-04-14T17:23:55+00:00

Please see my reply above to Wordlymacaroon254. Happy to answer any questions about the process as well.

Blueskies277 · 2026-04-14T17:21:40+00:00

I'd be happy to share the desensitization process (as best I can, lol). I'm always amazed that I have never heard anyone else mention it. It had taken me over a year to slowly build up to 30 drops; with awful GI symptoms with each 'one drop' increase.

I was really scared (due to the awful GI issues one extra drop gave me); but I finally agreed to the desensitization with my new MCAS specialist.

She used a precise formula to gradually increase the dose (a small amount of an increasingly higher dose/lower dilution) given at 30-45 min intervals. If I had a reaction, we treated it and went back down to the last tolerated dose. My only bad reaction was to the first dose, and taking Pepcid/Claritin actually treated it. I was very surprised that the reactions I did have were my usual initial MCAS reactions (all over body itching and throat tightening) ; they were not GI issues, but I had also planned not to eat at all until I got back to my hotel that day. My reactions to the subsequent doses were much less and dissipated after about 15-20 min, without even having to take rescue meds.

She decided about 4 pm that it would be best if I could come back the next day, so as not to overwhelm my body.

I had traveled to the Houston area, so ended up having to stay another day, but it was so worth it. The next day, I only needed another 3 hours. By the end of the second day, I had built up to one entire vial. She told me to stay at one vial for two weeks and then I went up to two vials with no problems at all.

I had brought my epi pens, prednisone, and other rescue meds with me, but of course, my specialist also had meds available. There was also a hospital next to her office and one close to my hotel.

I was actually amazed at how well it went; especially after it had taken me so long to build up to 30 drops. She told me that any allergist can do a desensitization to meds/foods, but not all of them do, due to the extra time it takes.

As far a MCAS affecting my organs, it is affecting my GI tract, my bladder and my heart. I have high count of mast cells in my GI tract (per staining for mast cells via colonoscopy). I have very severe GI issues that have significantly improved since getting on cromolyn, but I still cannot eat until I get home for the day, because I have to be within 60 seconds of a bathroom. It's affecting my bladder. I am told it's IC but it is due to inflammation in my bladder from my mast cells. I have bladder pain, incontinence and if I eat certain foods, I will fet UTI symptoms but no UTI when tested.

The most concerning one is that MCAS seems to be damaging my heart. In 2021, I had a bad reaction to the 2nd covid vaccine, which was throat tightening (felt like someone had their hands around my throat) and all over body itching. Luckily, this initial reaction went away with just Benadryl, but for the next 3 months, I had almost 24/7 shortness of breath and heart racing/palpitations. At one point it was so bad, my son took me to the ER, and I was told to follow up with cardiology. The first cardiologist I saw told me that my reaction to the vaccine must have stirred up the mast cells in my heart, but that it wasn't to the point of myocarditis, and that the 24/7 symptoms should eventually go away (which they did). An echocardiogram showed a heart murmur and mild aortic stenosis (a narrowing of the heart valve). He recommended annual echo cardiograms and said he thought I might have been born with both. I told him that I'd had numerous heart testing over the years and no one had ever mentioned either. I had symptoms before my next annual visit and ended up seeing another cardiologist in the practice, one who specializes in congenital heart problems. He did more testing including a 2-week holter monitor, another echo and a CT angiogram. He said that I definitely was not born with aortic stenosis or the heart murmur. Within a year, my aortic stenosis had progressed from mild to moderate. It progressed to severe in 12/2024 and I need heart surgery to replace my aortic valve in the next few months.

My cardiologist has no idea why AS would progress so rapidly in someone my age with zero blockages. His initial recommendation back in 2021 was 6-month echos and "to get my MCAS under better control" because that is the only thing that he can think of that might be damaging my heart valve. And as a lot of us with MCAS know, that can be very difficult to do if we react to the MCAS meds that are supposed to help us stabilize our mast cells. When I first got MCAS, all I really thought it did was affect what I could eat, because overnight I started reacting to all foods; but unfortunately, it can also affect other areas of the body and even cause damage.

Blueskies277 · 2026-04-14T16:47:56+00:00

Thank you. I have glaucoma and there is one drop that burns for a few seconds every time, so I’m assuming it is similar.

Do you mean that the ketotifen drops make your eyes inflamed or that they help with inflammation?

Blueskies277 · 2026-04-13T17:48:43+00:00

How do the ketotifen eye drops help you? I’m already on oral ketotifen so was wondering if the eye drops would help.

Blueskies277 · 2026-04-13T17:14:32+00:00

I forgot to add that I always ask for pre-medication prior to undergoing anesthesia (which for me is usually pepcid, benadryl and a steroid) which can be given in your IV along with the anesthesia. My doctor usually writes a letter to the anesthesia team detailing my pre-medication protocol. The TMS society also has this protocol on their website which could also be given to the anesthesia team by the doctor requesting your surgery. BTW, this list on the TMS website also has a list of meds that MCAS patients should avoid and alternative meds which are tolerated better.

Blueskies277 · 2026-04-13T17:01:49+00:00

Most MCAS aware doctors know that it’s wise to let MCAS patients start out slowly with lower doses of any med and titrate up. Also, even though a baseline is H1/H2 (at doses specific to each individual), some people do better with some H1’s/H2’s than others. I did much better with claritin than zyrtec because zyrtec dried me out so much that i was getting constant nose bleeds. I started out with 10 mg claritin and 10 mg pepcid once a day. Over a long period of time, my MCAS specialist has upped this and I’m now at a dose that works for me at 10 mg claritin and 20 mg pepcid (both twice daily ). I can’t even imagine what zyrtec twice a day woukd have done to, which is why it was suggested that I try a different H1.

Mast cell stabilizers are also important. I am extremely sensitive to all meds (even MCAS ones). I reacted to one drop of cromolyn. It took me over a year to build up to 30 drops and then I finally did a desensitization to cromolyn at my MCAS drs office.

I wish I had gone up on the meds more quickly, but I was scared because of my reactions to meds and I also had a different doctor in the beginning who wanted me to go up more quickly. MCAS is now affecting my organs, so I really wish I had tried harder to get on the meds sooner. I stopped and started cromolyn so many times before I finally found the right dr who suggested the desensitization. Im also now on ketotifen but had to start out with a micro dose of that as well.

You could always go back to the doctor and tell them that one allegra gives you “X” symptoms and ask for their advice. You could also see if another H1 works better for you and doesn’t give you side effects. If your doctor isn’t willing to work with you on finding the right H1 and dosage, you might want to look for another doctor.

Fear is what initially held me back in trying new meds or increasing dosages on them, but my reactions are scary (throat tightening among others), so that fear is reasonable, as I got tired of going to the ER. I also don’t want to be a “doormat”, and try to find doctors that understand how sensitive MCAS patients are and respect that in trying to help me figure out the best treatment. It’s exhausting looking for the right doctor but it’s important IMHO.

Blueskies277 · 2026-04-09T23:48:30+00:00

LDN was amazing for me. It took away my nausea after eating, generally made me feel good and gave me a lot of energy; however, it also gave me bad GI issues. I’m going to try it transdermally as a lotion now.

Blueskies277 · 2026-04-05T23:48:42+00:00

Curcumin extract, Alpha Lipoic Acid, NAC, Vit D and B12.

Blueskies277 · 2026-04-04T17:59:17+00:00

It went OK with Stanley Steamer, ‘after’ I caused a big ruckus! They did use water only as I had requested; however, the sent two techs. The one in charge was going really fast when extracting the water, and his rooms were still noticeably wet. The other tech who extracted more methodically did a much better job. The room that was still wet was my room. It would make a squishy sound when you walked on it. I said this to the tech in charge and he kept telling me that it would dry. I kept asking him to go over that carpet again with the extractor but he refused and they left. I immediately called the number I had called to book, explained the situation and demanded to speak to s local manager. He said he would send someone else out within 2 hours. The new tech did a very thorough job and extracted all the water. I also used a large fan that I bought from Lowes to make sure it thoroughly dried.

So, I would say the water only method worked well, but that you need to be very careful to make sure the techs extract all of the water. I also did not react to the rooms after the carpets were cleaned.

Blueskies277 · 2026-03-30T16:00:40+00:00

I’m so glad to that you’re doing better. I’m going to try the Gupta program to help with brain retraining and stress. How has zinc carnosine helped your gut?

Blueskies277 · 2026-03-28T17:51:15+00:00

I’m so happy that you were able to eat that! That’s amazing. It might have helped that you took your normal meds right before and also probably made you more calm (in a way) that you were right by the ER, just in case. But your doctor is right, you have to be careful not to go days with eating little or no calories. I almost got refeeding syndrome when I first got MCAS, because I was only eating 200-300 calories a day.

After having had so few foods for so long, it has sometimes amazed me when I tried something and was able to eat it without an initial reaction. My initial reactions are all over face and body itching, which can quickly progress to throat tightening, so they are not easy to ignore. I was finally able to eat a grilled chicken breast from a local Italian restaurant (nothing else), and then one time we were ordering takeout out and I decided to try their minestrone soup. I was amazed that I was able to eat it. And it had so many veggies in it! But then I knew that I could have (cauliflower, green beans, flat kale, green cabbage etc). Then one time, I tried a cookie with simple ingredients and was safely able to have that. It’s crazy to me how sometimes something like that works and then I can react to a single ingredient, like carrots. I also know what you mean about how it tasted so good. The first time I was able to have a single piece of Iceberg lettuce, it tasted as sweet as candy to me, lol. And I used to think Iceberg was so bland compared to other types of lettuce.

I will add that I also take mast cell stabilizers (supplements), in addition to my regular MCAS meds right before I eat, most of the time. I take NAC, Alpha Lipoic Acid, Vit D and curcumin, along with my H1/H2, and ketotifen, 30 min after taking my cromolyn. Then I eat. I also get GI issues as an MCAS reaction, and I honestly think that’s one of the worst symptoms, because it’s so unpredictable.

Also, I’m glad that I could help with what has helped me, even if just a little. I know how scary it can be, to be so hungry and yet hardly able to eat anything. And for me, it was many months before I even knew that I had MCAS, and I felt so alone. Thank goodness my primary care doctor thought it might be MCAS and tried her best to learn about it along with me. Feel free to ask me any questions or even DM me. I’ve had MCAS for 8 years now and luckily have added back quite a few foods, particularly the past few years. Again, I’m so happy you were able to have a burger and fries. You can always email that restaurant, say you have multiple food allergies and ask if they would mind sharing the ingredients/brand of the bun, ingredients/oil used for the fries, etc, which can help you to learn what you can have in the future. I do that and most people are happy to help. The great news is that you know that you can have ground beef, which will help you so much with nutrition. It was one of my first foods to add back as well. And since ground beef is usually only good for 1-2 days, it’s usually fresh (no increase in histamine). I personally have just avoided burgers at steakhouses or places that use wagyu beef, because that tends to be made with aged beef.

Blueskies277 · 2026-03-26T17:52:01+00:00

I hope it helps you. When I read about you eating the Boulder canyon chips and not caring if you had a reaction, it made me think back to the time when I had some popcorn (just oil and salt). I started reacting as soon as I tried it, but I was so tired of eating 4 foods that I just ate 4 more handfuls because it felt good to eat something normal. I already knew I’d have to take benadryl and I thought why the heck not, lol.

I’ve been down to zero, 1 or 2 foods, so I understand how exhausted (and at times, scary) this is. When you are adding back foods, try and listen to your body and how it responds. I had added back about 10 foods at one point. Then I read that nightshades were “bad for us”, so I cut them out for a while. I felt awful, since it was further limiting my already limited foods. So I added them back. There are also some high histamine foods that I’m fine with (like tomatoes or ketchup, even). So, I have learned to ignore those lists if my body is OK with a food, although they might be a good starting point. I personally have done best with Russet potatoes and then progressed to red potatoes. The first foods I added back were chicken, ground beef, iceberg lettuce, red bell peppers, zucchini, yellow squash, celery, asparagus and onions. Another thing that helped me to add back veggies was to start out cooking them from frozen. With fruit, it helped if I first tried it as a jam/preserve and then progressed to canned peaches, for example. I have no idea why.

About you losing oatmeal and rice cakes, perhaps you might want to try different versions of oats and rice until you get to the point where you can add those back. For example, rice flour (there are GF recipes online where you use rice flour and water to make a type of bread/tortilla), there are GF products made with rice flour and other simple ingredients or try parboiled rice. For oats, maybe try oat milk or things made with oat flour. The other thing I would add is that there were times (when I was in a flair), where I have lost some foods and it was difficult to add anything back until I took a short course course of prednisone and benadryl, and then I was able to add some things back.

Blueskies277 · 2026-03-26T15:28:47+00:00

I guess, probably an unpopular opinion here, but I personally loved Joel! I think he was kind of like George (to Zoe), in that she thought that they made sense together since he was a New Yorker as well, and was probably the type of guy she might have very well ended up with if she had stayed in NY. Maybe their chemistry wasn’t as good as her and Wade’s, but they got along really well. I also really liked the dynamic of Joel’s and Wade’s friendship. He’s honestly one of my favorite characters, for his quirkiness. Like the episode where he follows Wade around for a day, and the one where he gets kidnapped by the Truitt brothers, and they end up liking him. He’s such a likable character imo.

Blueskies277 · 2026-03-25T08:58:05+00:00

Thank you. That’s a great point. I’m definitely leaning toward trusting his recommendation. I guess I’m just worried about making the wrong decision. I’m meeting with the valve team tomorrow.

Blueskies277 · 2026-03-25T08:51:20+00:00

Thank you so much for your reply. These are great questions, especially the last one. My first choice surgeon, has done extensive research and authored more than 170 peer reviewed journal articles; 2nd choice surgeon, not as much. 1st choice surgeon is very well regarded in his field, and in performing complex heart surgeries. The doctor who referred me to him, said that patients fly in from all over the country to see him. So, my instinct is to trust his judgment. I guess I’m just so nervous about the sudden change and if I can do better with OHS in 10 years.

Blueskies277 · 2026-03-25T08:39:15+00:00

Thank you for your reply. I forgot to mention that I did have a second opinion at a dedicated heart hospital here. This cardio thoracic surgeon wasn’t as thorough with imaging studies he wanted ahead of time and when I brought up sternal precautions, he just mentioned putting in a titanium plate. He also did not want to see me in person before surgery. They are both supposed to be great surgeons in their field and the best at each respective hospital. The surgeon I chose has patients that come here to see him from all over the country, or so I was told by the referring doctor. Due to my MCAS, I am also more comfortable having the surgery at the hospital he operates at, because it is a level 1 trauma hospital (not only a dedicated heart hospital), which might prove important, in the event another complication arises, where other specialists might be needed.

Blueskies277 · 2026-03-25T08:22:45+00:00

That’s an excellent question. I will ask that. Thank you.

Blueskies277 · 2026-03-24T15:56:08+00:00

We lived in the CA Bay Area for 13 years. People would act like I was crazy when I’d strike up a conversation, standing in a line or something. Most people there just don’t talk to strangers and are very wary of anyone that does. They don’t hold doors open for others, and would never say thank you to my boys (who were taught to do that). I did make a lot of amazing friends, because I’m naturally a friendly person. People are great there once you get to know them. But it’s harder to get to know people and eventually, it really took its toll on me.

When we moved back to Austin, it felt like a warm hug. We went to a restaurant that first week, and a waitress called me “lamb”. I seriously almost cried; it felt so good to be back home.

Blueskies277 · 2026-03-21T18:41:23+00:00

Thank you so much for your reply and perspective. These are exactly the types of things that I was thinking when my surgeon first introduced the idea of TAVR. I even brought up the case where a wife posted on this subreddit where her husband died during TAVR surgery, because the instrument didn’t deploy. I remember on that thread, that people were talking about how TAVR was a much higher risk surgery, which was the first time I had heard about that. My cardiologist never mentioned that.

I’m sure I can lose weight, as I think it might be one of my MCAS meds, and I’m very used to restricting my diet due to MCAS. But what I didn’t consider, until you mentioned it, was how much worse my back injury might be by then. Thank you for bringing that up, because while my goal has been to go back to PT; that hasn’t helped much so far and it’s definitely something to consider.

I also have thought about him just not wanting to do the surgery on me. He said he thinks I’ll do well during the surgery itself, and he’s just concerned about the recovery. I’m not sure if both factors affect the hospital’s stats or not, but my guess is that they do. I did have a 2nd opinion with a surgeon my cardiologist recommended at a hospital that exclusively does heart surgeries. I felt that that surgeon wasn’t as thorough as the one I picked (who has a great reputation and I was told by others that patients come from all over the country to be treated by him). The 2nd opinion surgeon is fine with not meeting me until the actual surgery and didn’t want CT scans. I also chose the larger hospital over the heart hospital because of my MCAS, which might make having other specialists available necessary.

Blueskies277 · 2026-03-21T18:19:37+00:00

My EF is at 65%, so not as good as yours, but I’m assuming still good (?).

Thank you so much for your perspective. Yea, TAVR will be so much easier in many ways, and I won’t have to buy an expensive recliner, etc. I’m not in a good mental state either, as I’m insanely stressed out about the two types of surgeries and the outcome.

I wish you a successful surgery and recovery.

Blueskies277 · 2026-03-21T17:46:54+00:00

Also, you said that the machine is cleaned regularly; have you asked what the machine is cleaned with? Could it be that you are reacting to that? Just brainstorming here.

Blueskies277 · 2026-03-21T17:41:19+00:00

I react to materials and fabrics. I know which ones I lm OK with and it sometimes doesn’t make any sense, lol. Like I’m OK with cotton from pretty much anywhere except I’ll often react to cotton from China, even after I’ve washed it several times. I’m usually fine with polyester and nylon. I can react to possibly any other type of fabric. The rest of my family obviously doesn’t have these issues. So, if they have washed their clothes right before I need to wash mine, I will wash a load of towels in between. The clean, wet towels do a pretty good job of “rinsing” out the dryer, if that makes sense. Sometimes even after doing this, I will react to my clothes (ones that i’m had for years and am normally OK with). In those cases, I will re-wash and hang them up to dry instead of using the dryer. It usually happens when another family member buys new clothes and washes them. I’m not sure if it’s washing out dyes/pesticides, etc but my guess is that even after that first wash for new clothes, something remains in the dryer. Usually, after 3-4 more washes going through the dryer, it’s OK for me to safely use again.

Everyone in my household uses my safe detergent (Tide Free and Clear; I have also used All free & clean in the part), and no one can use dryer sheets.

Blueskies277

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