Everything (that has been able to be run… still haven’t had a chance to run the DS-DNA, C3 Complement, or one other) is normal… Rheumy wants to see me in January. No idea what to do about weight or digestive issues at this point. No idea what’s causing them.
I don’t really want to talk about it… but I did want to update.

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.

This morning was spent on E’s and my health. We both had appts at our PCPs office to get our labs run. E is having the normal works…. CBC, Complete Metabolic, urinalysis to check kidney function and make sure everything is normal there too. I think theres another test or two, but I can’t remember. On my end it was all but two of the tests that were ordered when i was at my rheumatologist’s office the last time (9/29), the remaining blood tests need to be drawn at the hospital, as they aren’t in the tests that the lab our clinic sends it’s tests to covers. And that sentence will probably need to be fixed later when I’m more awake. Basically the clinic that provides our primary care has a draw station attached, and can run certain tests as well. The rest get sent up to a lab in the state’s capitol city, as the clinic is a state run clinic, and that is where the state’s lab is. They do not provide all testing, and do not have the ability to do all testing, I’m not sure if the reason is financial or something else. So the tests that aren’t able to be done by that lab are tests that have to go on another lab order for me to take to either the hospital we live by or the hospital my rheumatologist ie abouts connected with (her office is in the hospital complex in the city she works out of). After I get these last two tests run I will call and set up my next rheumatology appt and will likely get the results of everything in three to four weeks, as she only works two days a week at that office, so she is usually pretty booked up, and that also gives the hospital time to get all the results to her. The clinic, which ships all of my labs to the opposite end of the state, gets my labs back faster than the hospital, and is more reliable about actually getting them to my rheumatologist. So a few days before I go see her again I will have to call and make sure they have received all of the results. If not I’ll have to call and bother the hospital until they send the results to the proper place.
While we were getting the other labs done they ran the pregnancy test that my PCP wanted done before I started the bcp. It was negative… no surprise there. So I started on my birth control, and back on my blood pressure medication (for my Raynaud’s) after we got home. And I’m warning everyone now, it will likely turn me into either a ball of tears or a raging bitch, and probably I’ll go between the two until I get through the adjustment period. If I can get my body to cooperate I will be using the pills continuously, so hopefully that means that I will settle into whatever normal will be for me on this pill rather quickly and stay there until I go back off of it! We’ll see… I’d like to skip periods as much as possible during that time, and it has the added affect of no changing hormone levels since I’m on a monophaisic… so unless I’m having periods every month my hormones will be staying the same (or close to it) constantly until my body decides it’s time to bleed or I go back off of the pill. And if that works, it’s good news my friends. In fact it’s excellent news!
Oh, and a report on the amount of pokes for my labwork… two! And not only that, my blood flowed well enough for them to get the full amount that is liked for the tests, rather than just the bare minimum, which is what usually is drawn if they can get my veins to give up any blood. So I’m keeping myself overhydrated again tonight, then going to the hospital tomorrow as long as I continue to feel alright, at which point those other two tests should be easy to draw for!
The trick seems to be drinking a lot more than necessary for staying hydrated, so my veins stay plump, followed by them applying heat to the area of my arm they want to draw from immediately before they insert the needle. Between those two things and the tourniquet my veins end up showing themselves!

So that post about yesterday (doc appt/ER visit) is coming, it’s actually a draft sitting waiting for me to finish it…. and I WILL finish it lol! I’m adamant on that. But I thought this was important to get out.
One – I’m taking some time for myself tonight, I’m currently listening to music and getting ready to cook spaghetti, which is a comfort food and something I’m pretty awesome at making. I’m hoping that once we get our food stamps we’ll be able to get everything I need to make my own sauce!
Two – We’re doing more testing on me on Tuesday. What all is being run will be decided when I get to my PCP’s office, but there will be testing done … provided we can get through the layers of bruising and pain all over my arms from lots of blood draws and attempted blood draws the last couple weeks, and IVs yesterday. (It took three tries for that stupid IV)
Three – Whether I get it through the clinic that my PCP works out of or through Walmart (who provides free counseling over the phone for employees and their families) I will be getting some counseling… my health stuff has been extremely overwhelming lately, especially with the weight issues and not knowing what’s wrong with me *this time*…. 😦 On top of that I’ve had two miscarriages in about 4 months… two pregnancies within 5 months… so mentally although I’m not necessarily in a bad place yet, I’m not well. I want to keep from getting to a bad place. My doctor and the paramedic/nurse who usually takes care of E and I pre appts (taking vitals, etc.) have both been trying to get me to consider some counseling since the first miscarriage. I have been considering it since early Sept when it became obvious the weight and digestive issues were chronic and not just a bug. This second miscarriage has made up my mind for me. I will be getting counseling one way or another… I just need E to bring home the information for Walmart’s program for me. I don’t want to get to the point where I’m forced to get help, I’d rather make the decision on my own, and get the help now so I can start coping better.
Four – We didn’t get the disability aid (E makes too much, which is fine with me, at least we aren’t making as little as we’d need to be to get that aid) but we will be getting food stamps… especially since I’m supposed to get them since I’m going for disability. This will be a HUGE help! 🙂

“Stop multitasking with your health!” ~ Sonja
“I try not to, but it just happens!” ~ Me

So… I’m doing a minor lupus flare, dealing with whatever is happening with my weight (still haven’t gained any, but I haven’t lost any either, so at least I’m holding steady), having my period, and on top of all of that I’m dealing with some kind of cold or flu… coughing, stuffed up nose and headache… as well as just an icky feeling in my chest… like it’s tight or something.

The good news is in spite of all of this my emotions are remaining pretty even. I had a day where I was in the doldrums, I believe I mentioned it a couple of days ago. Other than that day my moods have been pretty even though. 🙂 So things are ok here. 🙂

E’s now on his days off, so we’re spending time together. Bills have been paid, thanks in part to my in laws. We have the appt for the food stamps and state disability aid on Wednesday. I also have the name of the lady to talk to at the health department about medicaid. I received a packet from Social Security the other day, and part of it was a letter regarding food stamps and the fact we qualify for them due to applying for disability, so that will be going with us.

I think that for the most part our time before he goes off will be spent relaxing together at home. E may go hang out with a friend for awhile tomorrow afternoon, and we have the appt Wednesday morning, but otherwise I think it’s just a home weekend. And we’ll see if E goes this weekend or waits for next weekend.

I talked to my rheumatologist’s office today about some paperwork, and mentioned my (failed) lab tests, she said to let them know when I do manage to get them done, and to drink a lot of water before I go. We also decided to cancel my appt and reschedule once the tests are done so they’ll actually have the results before the appt. So hopefully sometime this week I can go get them done and reschedule the appt. We’ll see what happens.

Some good things that have happened lately: We’ve talked to the kids a few times lately. Unfortunately they don’t have a phone right now, service was cut off, but we will be able to continue talking through emails, which we’ve done before when one set of parents or the other lost phone service. But we talked to them either 3 or 4 times in the last 7 days or so. 🙂 And I talked to them for quite awhile yesterday morning. They both get so happy when they get to talk to us, and it was so cute the other morning when Duckling called us (she called the night before, but I had started spotting earlier that day, and wasn’t feeling well so I couldn’t really concentrate on what she was saying), when I answered she said “J! J! J! J!” and was squealing and sooo excited to get to talk to me. 🙂 And Gamer and I can talk for quite awhile, so we generally do. Between the kids, and them getting to talk to both of us, phone conversations usually end up being at least an hour, part of it with Duckling being silly and excited and cute with her Daddy and I, and part of it being Gamer having in depth conversations about books he is reading, or some about school, or video games or tv shows with us. 🙂 We have such wonderful kids! I love them so much!! 😀 I can’t wait for next summer when we have them again!
E and I have been spending time together whenever we’re both awake and home, and just enjoying each other’s company. He also comes and curls up with me in bed within a couple hours of getting home if I’m still in bed… I think it was 3 mornings during his last work week (including this morning) he curled up in bed with me within 2 hours of getting home from work, and I get lots of cuddles when that happens. 🙂 It’s a lot easier for me to fall back asleep while cuddling than to fall asleep the first time around while being cuddled… because I’m already in a comfy spot and he just curls up with me however I’m laying. 🙂 I’ve been feeling very loved, and I know he has also! 🙂
M has been making us laugh a lot, and the other day he didn’t want to let me out of his sight (he’s also been staying in bed with me even after E gets home, rather than coming out to the front room with E), so he went into the bathroom with me, which isn’t so unusual. This time however he decided I was moving too slow and he wanted attention, so he jumped on the toilet so I’d be able to reach him easier… the issue was I’d just opened the lid!!! Luckily he caught himself on the seat, he had all four paws in about a 2 square inch area (quite the feat for a big cat) and I was able to push him off the seat before momentum pushed him into the bowl lol! It was very amusing, I was still laughing after I got out of the bathroom and got back to E so I could tell him about it!