Grrr people just don't get it

I feel for you lawchick, I know I certainly didn't think I would still be like this after so long.

Are you having any more progress with your specialists?

I still have this problem with food time to time with my parents, mainly because I don't see them often so they just don't get how restrictive it is. I've just ended up being straight up with everyone, I have cancelled so many plans with friends now that I just don't get invited to things anymore, but even though they don't really understand what I'm going through, or why its such a big deal, they know that it causes a great deal of stress for me so they are sympathetic to that.

At a certain point you need to just accept that people aren't going to understand, or they will underestimate how bad things really are, Mum had me in a downstairs bedroom when I visited thinking I would have no problem getting up the stairs, but I was borderline asthma attack every time I went up them and she was shocked, but I told her thats what would happen because my airways are so inflamed and messed up from this. It really sucks, and there are probably crappier family members who will resent you for it, but lets face it if you go you are going to feel miserable, and if your family is like mine you will probably get giving grief for that as well, and if you don't go you will worry that you have upset them, but you will be able to have control over what you are eating and stay in your comfort zone.

Don't feel bad for a second that you need these measures when eating, you need to do what you can so that you aren't going to be feeling awful later because your throat feels clogged or you are regurgitating things. People really don't get how psychologically damaging having to micromanage your eating is or that eating differently can end up ruining your whole day. I'm not sure what you can do at work, can you close your door or are you in an open plan office? Maybe go for a walk somewhere outside your office to eat? Maybe you could hide under your desk? (joking) As for at home, thats the one place you should be able to do what you need to. My fiance has been right there by me the whole time watching me go through things and he sees how food can affect me, but there are still things he doesn't understand and therefore forgets about. I got really upset at him because we seemed to be eating later and later into the evening and ended up exploding because I was miserable having to either stay up super late or risk aspirating or getting worst reflux in my sleep. Hes been really good when I just talk to him about it, I do have to remind him from time to time, but I also make sure I thank him whenever I remember for being there and for all he has done to look after me and just to be there with me for appointments and stuff.

Long story short, I think you should do what you need to do to be comfortable eating. The stress of how others will react is far less severe than the stress of having deal with the fallout of having to rush or not being able to eat.

LAWCHICK,
I'm so sorry you are having such an awful time with food. You certainly don't need the stress of Thanksgiving to make things worse. If I were you, I would kindly tell whoever is hosting Thanksgiving dinner, that you would love to be there but are just not well enough with all you've been through and are having a rough time with food.

People who care with understand. For those that don't, who needs 'em?

You're so right; people can't understand how debilitating GERD is and how it impacts our daily life.

Keep looking for answers and try to have that manometry done; it's a critical test for seeing what needs to be remedied. Hang in there, we care here, and the best thing for you is to be as comfortable as possible without STRES and just stay home.

I would try to stay with people who will give you the support you need. I have a very nice roommate who is a chef and when he moved in I already had GERD and he cooks me a different meal when we have diner parties now I also have added Gluten free to my diet. He has all his friends over every Sunday to sit in the man cave watch football and eat. He now only cooks Gluten Free for everyone to support me his friends are on board with it also. They are planning the Thanksgiving diner that will be safe for my GERD and be Gluten free, funny to see 5 men watching football and reading Gluten free cookbook with of course no spice at all.

That's support !!!! And he is just a roommate. I wish all families could be like that.

That's awesome albgirl!

It really is. And people don't get it's not "all better" right after surgery. There's a long recovery with it's own symptoms. This may be a bad idea but if being with his family is a make or break it thing for your husband, especially without his mom there, would you consider doing your own things for the holiday? Just a thought.

jenagade said...
Doctors really love to pin problems on mental illness, and when they aren't doing that they are trying to blame other medications you are on as the cause. I feel your pain there!

Are you waiting to see an endocrinologist about your thyroid? Thyroid issues are so messy, there are heaps of flow on effects from the symptoms thyroid problems cause and it makes it hard to tell if there is something else going on. One of my cousins has thyroiditis, enlarged thyroid, and it took a while before they figured out what she had because she had a lot of symptoms that are super common for all sorts of diseases but once she started treatment a lot of the things that couldn't be directly attributed to her thyroid problem started to clear up too. She chalked it up to a combo of a sluggish thyroid, excessive stress, and that she was also found to be a bit anemic.

Is there anyone on here who lives in your area who might be able to suggest a good endocrinologist, or even just a better PCP for you? Your therapist is right you are doing a bloody good job coping with this considering you're not getting any headway with other doctors. Maybe you could ask your therapist if they could recommend a new PCP for you? They would probably know of ones with a better bedside manner when dealing with people who also happen to have anxiety, meaning that they wont instantly pigeon hole you and blame everything on the anxiety.

I went to the endo and she asked me if I was anorexic and said she had no answers for me and told me to go back to the rheumatologist. Im honestly at my wits end. I have Xanax that I have never taken because addiction runs in my family so I was nervous to take it but I am seriously about to just get some kind of relief.

I have the same problem Lawchick, you could see if there is another option for you, I wasn't comfortable about the idea of being on benzos long term, so I take venlafaxine instead, which is an SNRI, so far it has done the best job out of everything I have tried for depression and anxiety. It keeps them both at an acceptable level, and I'm not numbed by it.