Process of Elimination.
I'm sure some of you have been wondering what in the world I've been up to. Am I better yet? Am I working? Is anything helping? I tend to only like reporting when I have something substantial to share. There's been a lot of work being done, it's just not very quantifiable. Try this, try that, this works, that doesn't. When will I be better? I don't know. When will I go back to work? I don't know. I wish I could say yesterday :) How long do I give these new health professionals before I try something else? Despite having setbacks here and there, we are learning a lot together and they have my back. They are with me every step of the way and seem to genuinely care about me. They are also so smart and have come up with things no one else has thus far in this journey. So I don't have a good answer. But right now I'm sticking with them.
I know sometimes I may seem so certain something will work. I've clearly had a lot of fails along the way though. This is my coping mechanism. When something doesn't work out I go through a mourning period. Sometimes it's an hour and sometimes it's days. I was the same way with infertility. It didn't work out, I'd mourn for a few days, and then I'd jump back in with optimism. For me, I need to be two feet in. There's no in between. If I'm going to try something, I'm going to give it my all! Does that always mean I'm absolutely certain it's going to work out? Of course not. But does that mean I have to believe and have faith with all my being that I'm doing what's right for me in that moment? Yes. I think the tricky part is that I often don't let people in on my mourning or my skepticism. I shield others from it. I'm not good at being vulnerable in some situations and this is one of them. I can tell you after the fact what I was going through no problem. But in the moment, it's hard. It's not even that I don't want them to know. It's that I don't know how to be openly in pain sometimes. And I want to save myself from other's reactions or save others from having to react. It's awkward. I don't want to put people in that spot. And if I've had a bad experience with someone I'm likely going to guard myself even more the next time. I'm working on it though. Baby steps!
So what have we discovered? I'm a puzzle. Oh wait, we knew that ;) Right now we are focusing heavily on my gut issues. It seems to be the root of many of my issues (and we can't get anywhere without addressing it). Remember when I had SIBO (small intestinal bacteria overgrowth)? Well, that is still an issue. It's stealing my energy and making me sensitive to a gazillion foods. On top of that we've found that I have a histamine intolerance. These two things often go hand in hand. What happens is the DAO enzymes get blocked so they aren't able to break down the histamines from our food. What blocks these enzymes? SiBo, leaky gut, Crohn's, pain relievers, anti-depressants, antihistamines, DAO blocking foods like alcohol, immune modulators, to name some on the list.
We've narrowed down my diet substantially and I'm still having issues. Though I will say that things have calmed down quite a bit from where I was at least! So there has been progress made. You don't realize the power of food until you're in these situations. We had tried doing bone broth since it has a lot of healing properties. Wow! Did that go awry! I went into an insane flare. I was in excruciating pain. Have you ever felt like someone was just stabbing your arms nonstop? I hope you never do. It's awful. So if you're puzzled as to why you're feeling crummy or struggling with inflammation.. take a good look at your food. It's not easy. You have to narrow things down quite a bit and then add in foods to see how you react. And like me, you'll probably be shocked at what your triggers are. The good news is that this is all temporary. It won't be like this forever for me. Since doing a low histamine diet is not quite doing the trick we are moving to a 50/50 elemental and low histamine diet for three weeks. An elemental diet is basically a powder drink you make and drink slowly throughout the day. We're going to try allowing one meal of actual food for me to see how it goes. Crossing fingers and toes my body will accept that.
This hasn't been easy. I go from frustrated, to sad, to angry, to content, to excited, to sad, and so on. This has been an adventure with a lot of roller coasters. And in many ways it's been isolating at times. A lot of life revolves around food. And the other part of life involves getting out and experiencing life. And another part is often work. So I'm at a bit of a disadvantage right now with that. But I'm trying my hardest to stay afloat! And I do have such wonderful friends, family, and health professionals at my side.
Though I haven't been working, the days go insanely fast. Most days I have at least one appointment. And if I don't have an appointment I will probably at least go float then, which is another appointment sort of. I have to do food/mood logs everyday and check in with my doctor quite a bit. Maybe someday I can go a full week without talking to him or my nutritionist ;) haha The rest of my time is spent resting if possible. I try to do at least one thing around the house each day. Then there's the assignments from my physical therapist that I need to do. And it's the holiday season so I slowly decorated my house and am slowly buying gifts and wrapping them. The good news is that the Hallmark channel has been my new best friend :) I try to hoard energy when I can so that I can fit in some fun things with my family. The hardest part through all of this is watching it impact my family. I'm not certain how much my kids pick up on, but I know it's hard on Ben. How could it not be? Two weekends ago my mom took us to Jurassic Quest! She got a hotel so we could rest as needed. I used that card more than everyone else. But it was nice because it allowed us to go to the convention center for a bit, rest, and then go back later when it was not so insane. I was so wiped out by the end of the weekend. But I did it and it was worth it. Sometimes not being there is more heartbreaking than being there and not feeling well. It's a hard balance that's for sure.
As for work, I'm not sure what will happen. I put in a claim for long-term disability. Currently, I'm on unpaid leave. We have a PTO donation program at work, so I'm praying so so hard that people are feeling generous right now. The intent is to get back to work at the start of the year. It's not far away, so I'm feeling really anxious about it. I really hope this elemental diet works so I can get back on track with the rest of my healing.
If you want to read more about histamine intolerance, here are two good articles:
https://www.amymyersmd.com/2018/06/sibo-histamine-intolerance-connection/
https://www.amymyersmd.com/2017/10/histamine-intolerance/
Love to you all! I hope you're having a magical holiday season. And if you're on a roller coaster like me, that's okay too. We'll just keep doing the best we can :)
Ashlee
I know sometimes I may seem so certain something will work. I've clearly had a lot of fails along the way though. This is my coping mechanism. When something doesn't work out I go through a mourning period. Sometimes it's an hour and sometimes it's days. I was the same way with infertility. It didn't work out, I'd mourn for a few days, and then I'd jump back in with optimism. For me, I need to be two feet in. There's no in between. If I'm going to try something, I'm going to give it my all! Does that always mean I'm absolutely certain it's going to work out? Of course not. But does that mean I have to believe and have faith with all my being that I'm doing what's right for me in that moment? Yes. I think the tricky part is that I often don't let people in on my mourning or my skepticism. I shield others from it. I'm not good at being vulnerable in some situations and this is one of them. I can tell you after the fact what I was going through no problem. But in the moment, it's hard. It's not even that I don't want them to know. It's that I don't know how to be openly in pain sometimes. And I want to save myself from other's reactions or save others from having to react. It's awkward. I don't want to put people in that spot. And if I've had a bad experience with someone I'm likely going to guard myself even more the next time. I'm working on it though. Baby steps!
So what have we discovered? I'm a puzzle. Oh wait, we knew that ;) Right now we are focusing heavily on my gut issues. It seems to be the root of many of my issues (and we can't get anywhere without addressing it). Remember when I had SIBO (small intestinal bacteria overgrowth)? Well, that is still an issue. It's stealing my energy and making me sensitive to a gazillion foods. On top of that we've found that I have a histamine intolerance. These two things often go hand in hand. What happens is the DAO enzymes get blocked so they aren't able to break down the histamines from our food. What blocks these enzymes? SiBo, leaky gut, Crohn's, pain relievers, anti-depressants, antihistamines, DAO blocking foods like alcohol, immune modulators, to name some on the list.
We've narrowed down my diet substantially and I'm still having issues. Though I will say that things have calmed down quite a bit from where I was at least! So there has been progress made. You don't realize the power of food until you're in these situations. We had tried doing bone broth since it has a lot of healing properties. Wow! Did that go awry! I went into an insane flare. I was in excruciating pain. Have you ever felt like someone was just stabbing your arms nonstop? I hope you never do. It's awful. So if you're puzzled as to why you're feeling crummy or struggling with inflammation.. take a good look at your food. It's not easy. You have to narrow things down quite a bit and then add in foods to see how you react. And like me, you'll probably be shocked at what your triggers are. The good news is that this is all temporary. It won't be like this forever for me. Since doing a low histamine diet is not quite doing the trick we are moving to a 50/50 elemental and low histamine diet for three weeks. An elemental diet is basically a powder drink you make and drink slowly throughout the day. We're going to try allowing one meal of actual food for me to see how it goes. Crossing fingers and toes my body will accept that.
This hasn't been easy. I go from frustrated, to sad, to angry, to content, to excited, to sad, and so on. This has been an adventure with a lot of roller coasters. And in many ways it's been isolating at times. A lot of life revolves around food. And the other part of life involves getting out and experiencing life. And another part is often work. So I'm at a bit of a disadvantage right now with that. But I'm trying my hardest to stay afloat! And I do have such wonderful friends, family, and health professionals at my side.
Though I haven't been working, the days go insanely fast. Most days I have at least one appointment. And if I don't have an appointment I will probably at least go float then, which is another appointment sort of. I have to do food/mood logs everyday and check in with my doctor quite a bit. Maybe someday I can go a full week without talking to him or my nutritionist ;) haha The rest of my time is spent resting if possible. I try to do at least one thing around the house each day. Then there's the assignments from my physical therapist that I need to do. And it's the holiday season so I slowly decorated my house and am slowly buying gifts and wrapping them. The good news is that the Hallmark channel has been my new best friend :) I try to hoard energy when I can so that I can fit in some fun things with my family. The hardest part through all of this is watching it impact my family. I'm not certain how much my kids pick up on, but I know it's hard on Ben. How could it not be? Two weekends ago my mom took us to Jurassic Quest! She got a hotel so we could rest as needed. I used that card more than everyone else. But it was nice because it allowed us to go to the convention center for a bit, rest, and then go back later when it was not so insane. I was so wiped out by the end of the weekend. But I did it and it was worth it. Sometimes not being there is more heartbreaking than being there and not feeling well. It's a hard balance that's for sure.
As for work, I'm not sure what will happen. I put in a claim for long-term disability. Currently, I'm on unpaid leave. We have a PTO donation program at work, so I'm praying so so hard that people are feeling generous right now. The intent is to get back to work at the start of the year. It's not far away, so I'm feeling really anxious about it. I really hope this elemental diet works so I can get back on track with the rest of my healing.
If you want to read more about histamine intolerance, here are two good articles:
https://www.amymyersmd.com/2018/06/sibo-histamine-intolerance-connection/
https://www.amymyersmd.com/2017/10/histamine-intolerance/
Love to you all! I hope you're having a magical holiday season. And if you're on a roller coaster like me, that's okay too. We'll just keep doing the best we can :)
Ashlee
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