We’ve been having some bad days between us…. Johnny’s had an especially bad one since we woke up Monday morning (now technically yesterday for us)….. I’ve been having worse days again since Saturday…. Saturday was the day they estimated for Lily being born based on my last period. Also, I went out to the front room with Johnny and we both played video games, then watched movies as Johnny put together some shelves and drawers for our things, since we don’t have as much room to store everything now that we are no longer on our own (and haven’t been for about two months)…. I started rocking in the chair in the front room (something I just automatically do when I’m in a chair I can rock in…. I have as long as I can remember) and it made me think of Lily and our nursing times, and how I’d rock her when she was upset and Johnny was trying to sleep, and of our times falling asleep together in the rocking recliner in our room and it all just started hurting in a way I could cry again, and I have cried every day since that point now… which is nice, as I was unable to cry for awhile, but at the same time, I wish I could stop crying and be happy at least a little again…. even if it wouldn’t last long.
Johnny and I are doing what we always do when one or both of us are hurting, pulling together, holding each other, supporting each other.
I commented to him earlier that at least we know that we can survive together through the hard times, and that we always have each other….. this is the hardest thing we’ve had happen while we’ve been together, but we’ve had a lot happen (deaths in the family, family members being ill and we couldn’t get to them for various reasons, my own health issues, his arthritis getting worse, job loss, lack of income, having to give up the home we had together for over 2 years, having to move out of state at the start of our relationship, and so on)… and we always stick together…. and so far there’s no change there… it’s how we deal with things.
Today was spent cuddling, touching, talking about how thankful we are for each other, talking about (and crying for) Lily, and just spending time together. It was still a hard day (especially for my Johnny), but we always come out of them stronger, even if we are hurting more for awhile because they are hard days, we know we can rely on each other, and how much we love each other.

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I didn’t end up with that migraine thankfully, though I have had headaches on and off since. I managed to rest enough right after I started feeling the effects to keep it from going to a full blown migraine.
I have been much more calm and at peace this time around with the miscarriage, which is definitely a miscarriage and not just a late or bad period. That is not to be confused with unemotional or unaffected, I am still very upset, but I have been able to not freak out as much. The miscarriages last year caused me to really freak out and I was in a state of panic on top of all the other emotions, then I’d panic more because of the emotions not calming down, which would cause my emotions to become even stronger, which in turn would panic me more and so on. With all that panicking I wasn’t communicating well with Johnny, either in terms of what I needed, or in terms of understanding what he was trying to say to me, I kept overreacting to him. In turn he wasn’t communicating well with me, and it was just a big mess. Also, the second time last year I was freaked out by how much I was bleeding, the way I was still having pain and bleeding, and (after I saw my doctor) that I had to go to the hospital, and that he suspected I’d need a D&C. Johnny wasn’t able to go to the hospital with me due to work, and I knew that was the case, but it had me really upset with him. (He’d been out of work a lot due to his hip and was on the verge of some trouble, as well as the fact he’s our only income and with him missing so much work his checks had been really low.) I must brag on him for a minute though…. even though he couldn’t go with me to the hospital and he and I were upset with each other he made sure to get things set for whatever I would need when I got home. He had my pjs laid out for me, he had the couch set up so I could lay there if I needed to, he had a laptop on the couch for me, and he had my spot in bed ready for me. He’d also made sure to make comfort foods available to me (the ones we had any way) and greeted me with a hug when I got home and let him know I was back. He was obviously concerned, but there were circumstances that made it so he couldn’t go with me. This time around, since I’ve been calmer, he’s not been so freaked out by how freaked out I’ve been, and we’ve been communicating better I’ve had a lot more support in person. He hasn’t said that those are the reasons he’s been more supportive, vs less supportive last time, but looking back on those experiences, and how he’s reacted when I’ve been so freaked out by other things, that’s what was going on there. This time I’ve had back rubs, lots of cuddles, him just being around for me, and understanding if I need to let it all out. We’ve also been watching movies together, and lots of cuddles while sleeping (this generally doesn’t happen due to our pain and the locations of the pain, it’s very difficult for both of us to lay in a way that allows long term cuddles). And, after I received some money that was not set up for a specific purpose and needed for bills we were able to get the new Final Fantasy video game, so I’ve been playing that quite a bit, both as a distraction and because I enjoy those games. It’s just been a …. I don’t want to say better, but I’m not sure what else to use… different (?) experience all around. Still painful physically and emotionally, but things have been different this time as far as support and it’s just all been … easier I suppose.

Edit: the reason I felt the need to brag on Johnny for doing what he did when I was at the hospital was due to the fact although we hadn’t argued per se we had some pretty major disagreements over him not going to the dr with me, then not going to the hospital with me, and neither of us were happy with the other….. so it meant that much more to me that he did it.

For those who don’t know me well, or aren’t in my life anywhere but this blog… I LOVE food. I have trouble gaining weight, so this isn’t usually a problem. I don’t overeat (usually) but it is one of my joys in life, and although I’m not huge on cooking, I do like to try different things.. I’m (generally) not a picky eater. Or… I wasn’t a picky eater until I had to become one. I have multiple issues that *should* change the way I eat, but they never have. For example, I’m severely lactose intolerant… like to the point that the lactaid pills you take each time you have dairy don’t help unless I take at least double the dose they say to. I no longer take those. I now take probiotics that are formulated specifically for lactose intolerance. And I have to take two of those every day to be able to eat dairy, even though most people can cut it down to one a day after the first few daily doses. If I miss days and have to start all over taking them I have some issues the first day or two when I have dairy again (though not as severe as without them). Also I have other health issues that have diets to follow to help reduce some of the pain. I do stick with certain parts of them, such as I don’t generally eat citrusy or acidic foods (this is VERY tough since I love sour and citrus foods!), but there is a very obvious difference in how I feel when I splurge. Once in awhile I can splurge (with the proper medication taken at the same time that neutralizes a portion of the acid) and be okay, but those foods will not be a part of my normal diet again unless they come up with better treatments or a cure. There is a med I can take for my bladder, which makes it so that I am more able to tolerate foods and such, it helps build the lining back up, so things don’t get to the tender part of my bladder under that lining as much and I don’t have as much pain… but uninsured it’s $400 a month (last time I checked, I’ve recently heard more expensive quotes from other friends) so it’s not in the books right now since although I’m insured now I have to wait on pre existing clauses…
Anyway, onto the main point of this post. I’ve been very nervous trying to decide how to handle Thanksgiving with my inlaws. They know how much I love to eat, and I’ve spent a few holidays with them now, so they know how I am about stuffing myself at holiday meals. This year however, I’m having to eat very differently than I have so far, and a big thing is not eating protein, so I was trying to figure out how to do this without insulting them or having to tell awkward answers at the dinner table if asked what was happening. My digestion issues really aren’t dinner table conversation lol. All of us except my father in law have had some type of job in the medical field at one point or another, so 5 of the 6 of us don’t care… but he really does lol. So I was trying to figure out if I fill them in about my medical stuff ahead of time (my MIL is a nurse, so I figured if I called and filled anyone in it would be her) or if I just say ahead of time that my diet is limited right now or what. I asked E the other day, because it was a really big concern on my mind. He suggested we bring left overs home so I can enjoy some of the foods that I won’t touch while we’re there (I’m not wanting to make myself ill here or there, but I’d rather have the pain happen here, and I can’t pass up some turkey completely…), and if they ask just say a general “my health is getting a lot worse, so I’m having to eat a very limited diet right now” type of thing, and I can mention the likelihood of pancreatitis because my MIL will understand, and she can explain later if anyone else has questions…. They do know I’m applying for disability and all, so they are aware I’m not doing well, and after my last appt I told my MIL it was likely something with my pancreas, so hopefully that will keep it from getting too awkward. However, my in laws don’t have the greatest memories for reasons I’m not going into here, so I’m not sure if she remembers about the pancreas stuff or not. I would have worried about all of this anyway, but things are somewhat tense between me and my MIL, or were last time we spoke, so I really don’t want to make the situation worse. So that’s how we’re handling that. And the same will likely be done for Christmas, though I’m hoping that maybe they’ll think to ask if there are any certain foods to include in the meal for that get together. I’m not too worried either way, there’s usually enough variety that I’ll find enough food to fill myself… so it’ll all work out on that end. 🙂 Another way I may handle it, if I’m still not past this flare, is to just take the Ensure with me that I’ll be switching my entire diet to later tonight and tell them we’ll take left overs home for me to eat when I’m back on solid food again. Either way, it’s covered. 🙂

For those who don’t know me well, or aren’t in my life anywhere but this blog… I LOVE food. I have trouble gaining weight, so this isn’t usually a problem. I don’t overeat (usually) but it is one of my joys in life, and although I’m not huge on cooking, I do like to try different things.. I’m (generally) not a picky eater. Or… I wasn’t a picky eater until I had to become one. I have multiple issues that *should* change the way I eat, but they never have. For example, I’m severely lactose intolerant… like to the point that the lactaid pills you take each time you have dairy don’t help unless I take at least double the dose they say to. I no longer take those. I now take probiotics that are formulated specifically for lactose intolerance. And I have to take two of those every day to be able to eat dairy, even though most people can cut it down to one a day after the first few daily doses. If I miss days and have to start all over taking them I have some issues the first day or two when I have dairy again (though not as severe as without them). Also I have other health issues that have diets to follow to help reduce some of the pain. I do stick with certain parts of them, such as I don’t generally eat citrusy or acidic foods (this is VERY tough since I love sour and citrus foods!), but there is a very obvious difference in how I feel when I splurge. Once in awhile I can splurge (with the proper medication taken at the same time that neutralizes a portion of the acid) and be okay, but those foods will not be a part of my normal diet again unless they come up with better treatments or a cure. There is a med I can take for my bladder, which makes it so that I am more able to tolerate foods and such, it helps build the lining back up, so things don’t get to the tender part of my bladder under that lining as much and I don’t have as much pain… but uninsured it’s $400 a month (last time I checked, I’ve recently heard more expensive quotes from other friends) so it’s not in the books right now since although I’m insured now I have to wait on pre existing clauses…
Anyway, onto the main point of this post. I’ve been very nervous trying to decide how to handle Thanksgiving with my inlaws. They know how much I love to eat, and I’ve spent a few holidays with them now, so they know how I am about stuffing myself at holiday meals. This year however, I’m having to eat very differently than I have so far, and a big thing is not eating protein, so I was trying to figure out how to do this without insulting them or having to tell awkward answers at the dinner table if asked what was happening. My digestion issues really aren’t dinner table conversation lol. All of us except my father in law have had some type of job in the medical field at one point or another, so 5 of the 6 of us don’t care… but he really does lol. So I was trying to figure out if I fill them in about my medical stuff ahead of time (my MIL is a nurse, so I figured if I called and filled anyone in it would be her) or if I just say ahead of time that my diet is limited right now or what. I asked E the other day, because it was a really big concern on my mind. He suggested we bring left overs home so I can enjoy some of the foods that I won’t touch while we’re there (I’m not wanting to make myself ill here or there, but I’d rather have the pain happen here, and I can’t pass up some turkey completely…), and if they ask just say a general “my health is getting a lot worse, so I’m having to eat a very limited diet right now” type of thing, and I can mention the likelihood of pancreatitis because my MIL will understand, and she can explain later if anyone else has questions…. They do know I’m applying for disability and all, so they are aware I’m not doing well, and after my last appt I told my MIL it was likely something with my pancreas, so hopefully that will keep it from getting too awkward. However, my in laws don’t have the greatest memories for reasons I’m not going into here, so I’m not sure if she remembers about the pancreas stuff or not. I would have worried about all of this anyway, but things are somewhat tense between me and my MIL, or were last time we spoke, so I really don’t want to make the situation worse. So that’s how we’re handling that. And the same will likely be done for Christmas, though I’m hoping that maybe they’ll think to ask if there are any certain foods to include in the meal for that get together. I’m not too worried either way, there’s usually enough variety that I’ll find enough food to fill myself… so it’ll all work out on that end. 🙂 Another way I may handle it, if I’m still not past this flare, is to just take the Ensure with me that I’ll be switching my entire diet to later tonight and tell them we’ll take left overs home for me to eat when I’m back on solid food again. Either way, it’s covered. 🙂

Before anything else is said I want to make it EXTREMELY clear I am not suicidal. I want to live. There are some parts of my life that are very difficult, and which make it hard to live a full life, but overall I’d call my life pretty good. I have some very awesome parts in my life as well, and most of it is just… normal. I do get caught up in all the health stuff all too often, but it also takes up a huge amount of my energy. I have love and goals and dreams and friends and a lot of wonderful parts of my life. I also promised E he’s stuck with me for the rest of his life, and haunting him (lol) doesn’t seem quite like I’d be sticking to that promise! I want to grow old with him, and I want to be a part of Gamer and Duckling’s lives, and watch them graduate, and have a bio kid (though more and more I’m wondering about that…) and so many other things!
However, I’m also wondering more and more how much longer my body can make it. I have multiple chronic illnesses, and right now they are doing tests that will likely diagnose me with another one, and not only will it be another chronic illness, but it’s likely to be another serious one.
My pancreas seems to be the problem. I don’t know for sure yet, but that’s what the doctor is looking into, and I’ve been discussing things with a friend who has autoimmune pancreatitis (I linked to chronic pancreatitis, but my understanding is it’s about the same thing, just that autoimmune pancreatitis has autoimmune factors as well) and has told me (after hearing/reading my symptoms) that my flares and day to day stuff sound like what she deals with. She’s given me some suggestions on foods to eat, and to avoid, and confirmed my suspicion that it was meat causing the biggest issue, but has taken it a step further and told me it’s likely protein, which, looking back and also looking at the flare I’m in right now, makes perfect sense. I haven’t had a lot of meat recently, I more or less cut it out of my diet when I got so sick in late August and through Sept. but I have been eating A LOT of protein containing foods – especially eggs (which are unusual for me) and peanut butter (which I love)! It also explains why the Ensure Plus makes me ill and gives me heartburn.. there is more protein in there… and actually it’s quite a bit per bottle compared with my normal diet. :/
On top of that they still have no idea what’s going on with my heart. I’m not sure if I’ve mentioned this, or how much, but my heart races for no apparent reason. My blood pressure is in normal ranges, so that’s good at least, but my heart just races and races most of the time. They’ve done a few different tests that “should” have shown the reason for this, and so far they haven’t found any answer. The only thing that is obviously wrong with my heart is a very mild murmur, which should not be causing any issues at all, and seems to be unrelated to the fast paced heart.
And of course I have lupus, which I am treating, but I really don’t think the treatment I’m on is enough, while I understand the reluctance to treat it more aggressively at this point because it’s not severe, my quality of life is seriously impacted by what is going on with it day to day, and while I can be more active when I take my meds than when we’ve tried cutting the dose, I still have struggles day to day with it. I’m not asking for or expecting a cure or to never have bad days, but it would be nice to have a day or two at least once a month where I’m not dealing with it… and I’m lucky to get that every 6 months, even if I isolate myself, and avoid the sun and take perfect care of myself. It’s getting extremely frustrating.
I also have (as mentioned above) other chronic health issues, and between all of it I’m just worn out. Tired and unsure how much longer it’s possible to deal with this, and not sure how much longer my body will function. Some would say I’m overreacting, but honestly, it’s been a scary year, and I have survived, but… not without A LOT of wear and tear on my body and more than a few issues. I just really am not sure how much longer my body can handle all of the physical strain it’s under… and that thought horrifies and upsets me immensely.

Coffeesister’s awesome husband has an incredible post up about his wife and dealing with her health issues (among other things)!
I was linked to it yesterday and read it and felt so many emotions. I then proceeded to read it to E, who nodded the whole way through and understood so much of what he was saying, since it’s how he feels and overall how he deals with it as well…. (the frustrations with people’s suggestions, the frustrations of healthcare or the lack of, the watching me and knowing how difficult it is for me)… so, if you have ever wondered how E feels, what he thinks or how he deals… this isn’t written by him, this isn’t exactly how he’d write a similar post, but it will give you an understanding of how it all looks to him. It will also give you an understanding for at least some of the spouses out there of us spoonies! I won’t lump all spouses together, and not all situations are like this (healthcare, etc.) but this is how the spouses I’ve spoken with feel about all of it.

Coffeesister’s awesome husband has an incredible post up about his wife and dealing with her health issues (among other things)!
I was linked to it yesterday and read it and felt so many emotions. I then proceeded to read it to E, who nodded the whole way through and understood so much of what he was saying, since it’s how he feels and overall how he deals with it as well…. (the frustrations with people’s suggestions, the frustrations of healthcare or the lack of, the watching me and knowing how difficult it is for me)… so, if you have ever wondered how E feels, what he thinks or how he deals… this isn’t written by him, this isn’t exactly how he’d write a similar post, but it will give you an understanding of how it all looks to him. It will also give you an understanding for at least some of the spouses out there of us spoonies! I won’t lump all spouses together, and not all situations are like this (healthcare, etc.) but this is how the spouses I’ve spoken with feel about all of it.