My Autoimmune Life

So I have decided on a name for my second miscarried angel baby, who I just know (somehow) was a boy, even though the pregnancy wasn’t far enough along for that to be told for sure. I don’t know how I know, I just do. I asked E if he’d like to take part in the naming, but as I expected, he chose not to. We have differing views on miscarriages, especially early ones, so I didn’t think he’d take part, but also didn’t want to leave him out. Since he seems to have decided not to be involved I’ve picked out a name, though if he chooses to get involved before I do my memorial page in my scrapbook the name may change…. as of this time though his name is Benjamin Nicholas. And I doubt that will be changed. I feel a lot more at peace after sharing in an earlier post that I’d known I was pregnant with a boy, and even more at peace now that I have a name. All that’s left for my memorials is to get the things I need to do the pages. I’m not saying this will heal all the pain, but it just seems essential to my grieving process, especially with little Benjamin. So that’s what I’m going to do, whether E wants to be involved or not.

• 04:05 @LaMamaNaturale I’ll look around at different stores for them (crab apples) but I know the store we usually shop at doesn’t carry them. #
• 04:05 @LaMamaNaturale and with the area we live in I’d be shocked if I find any I used to live in an area with a lot of produce. that’s no … #
• 04:06 @LaMamaNaturale longer the case unfortunately #
• 04:07 RT @APSFA: RT @heartdisease: Many pregnant women put baby at risk with medications – canada.com: pwp5j.tk #
• 04:07 @WackyLisa Ummm… yes that does sound about right for the spilling on the bed checklist lol! #
• 04:09 Twitter and I are on t he outs right now because I’m on new pain meds which make me very verbose, and they try to limit what I say LOL! #
• 04:09 I’ll be around sometimes, but over all I think everyone would appreciate me staying away for now to avoid waaay too many tweets LMAO! #
• 04:10 You should see me on social networking sites, in emails, and other forms of communication! I’m trying to limit myself… really I am! #
• 04:10 RT @sonjathegreat: My first blog giveaway: bit.ly/7iKXGz #endo #endometriosis #infertility #
• 04:10 @sonjathegreat There… I just did the only announcing of your contest that I’m going to do #
• 04:11 @sonjathegreat I wants to win… not let other people know about it and lose my current 1 in 5 chance! LOL! I am feeling greedy! ILY girl!:) #
• 04:12 I have a lot of things I’m thankful for, but I must say that right now the big one on my mind is all my friends! I love you guys! <3 #
• 04:13 @lupuschick LOL I could talk for hours, no promises it’ll make sense though! #
• 04:13 @lupuschick Although we have a storm coming in… so my fingers are swelling and may not appreciate me typing for hours #
• 04:13 @lupuschick How are you doing? #
• 04:13 @lupuschick I have the bacon if you have the lettuce and tomato for your sandwich! #
• 04:14 @lupuschick And as far as needing to put up a tree… I did that when my inlaws gave us the one we have… two weeks ago! LOL! #
• 04:15 What’s that site for sharing pics over twitter? #
• 04:15 @lupuschick OK! You are welcome to do so! (Be warned nasty storm coming in, lots of barometric pressure!) #
• 04:17 @lupuschick the bones ache, the muscles ache, the joints swell, the head hurts #
• 04:17 @lupuschick rain later today, snow tonight, snow tomorrow… should be sunny and warm again Monday apparently #
• 04:18 @lupuschick if this storm doesn’t just skip over us entirely after causing me lots of pain as it goes past…. #
• 04:18 @lupuschick Hmmm… I think blip.com is the normal music one? #
• 04:18 @lupuschick and I answered myself re pics… twitpic.com #
• 04:21 @lupuschick You’re welcome…. I hope that is the right site… if not I’ll go looking back through tweets of a friend I know does music .. #
• 04:21 @lupuschick on here pretty frequently #
• 04:22 @lupuschick Overall I’m a lot better than I have been… storm pain is dealable with better pain meds, and I’m not in constant pain now! #
• 04:23 @lupuschick I’m sorry you are having sleep problems! #
• 04:23 @lupuschick I’m having awake problems… as in, while adjusting to being on vicodin (up from alleve and tramadol) I’m sleeping A LOT! #
• 04:23 @lupuschick You can keep the sun, I’ll take the temperature! #
• 04:24 @lupuschick Me too! It’s been soooooooo nice! #
• 04:24 @lupuschick Rheumy has had me on tramadol for several months, I finally called about a week ago and said with the weather changes I needed.. #
• 04:25 @lupuschick Something stronger because I was getting to where I couldn’t get out of bed… #
• 04:25 @lupuschick A happy medium would be really nice! #
• 04:28 @lupuschick Oh no! I"m sorry to hear it’s not helping! #
• 04:29 twitpic.com/rall5 our tree has been up for something like two weeks now… here’s some of our ornaments (on i
  t) #
• 04:29 @lupuschick I know we do… hence why I don’t want it here! #
• 04:30 @lupuschick LOL! I have a toe I broke several times that we talk about cutting off…. #
• 04:31 twitpic.com/ramel A picture with the whole tree… it’s been up around two weeks now! #
• 04:39 @lupuschick I couldn’t wait… as soon as I got it I had to put it up! It’s been a couple years since i had one #
• 04:46 bit.ly/4TtATG My newest blog post! #
• 05:01 I wish for quality over quantity when talking… my brain on vicodin is giving me the opposite LOL! #
• 05:03 bit.ly/5V6fA6 Those are soooo great! <3 #
• 05:05 @mergyeugnau Morning! Hope you have a great day! #
• 05:09 @mergyeugnau Thanks! I hope so… storm rolling in… :/ my body isn’t happy. I’m in a good mood anyway though.. and silly lol! #
• 05:10 @HeadacheSlayer I hope you sleep well!!! <3 #
• 05:11 bit.ly/60VZbn Got this from the mom of Duckling and Gamer (stepkids) – Gamer is an Aspie so it caught our attention #
• 05:11 That’s a really good article that I just linked to… highly recommend it to anyone! #
• 05:12 @mergyeugnau Thanks… have better pain meds, hope they will help, couldn’t have made it on what I had before… doc had good timing… #
• 05:13 @mergyeugnau actually getting them to me after I called and asked, I was worried she would want to see me first… #
• 06:31 Ugh… I seem to have a fever going. Normal for me is 96.8 to 97.0 … right now (with acetiminophen in my system) I’m at 98.0 #
• 06:33 (me 2) RT @AnkylosaurusRex: I <3 seeing friends & fam, but all travel/cooking/visits of Thxgiving has left me wanting to hibernate til Xmas! #
• 06:34 RT @danteshepherd: New comic! survivingtheworld.net It’s a recitation about contraception. #
• 07:41 RT @RA_Guy: When It Comes To Mobility, What Is Success? bit.ly/5Ay75S #
• 08:49 @WackyLisa It’s not generally warm milk with me, but no, you aren’t the only one! I’m glad he helped, and I hope so too!! #
• 09:15 @WackyLisa oh man! Usually it’s water for me, though tea has happened also! #
• 09:46 @WackyLisa I just replied to you on my blog #
• 12:41 I’m getting grumpy because things suddenly stopped going so well, it’s almost bedtime anyway, I’m going offline. Later all! #

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E had a doc appt Tuesday, he’s now on a different pain med which seems to be working better for him (he’s sleeping again, and not having to sleep as long to try to feel rested, the sleep is restful and he gets a good 8 hours almost every day so far… Thanksgiving being an exception due to timing of eating and all of that), he has a new bp med which we haven’t had money for yet, and he is to have an epi pen at all times (no money for that yet either). His cholesterol is high, so we are changing our diet some more, but there aren’t too many more changes we can make, it’s just a matter of them actually starting to make a difference… we made some huge changes to our diet about two months ago, though we’ve been eating pretty healthily over all since we got our own place about 15 months ago. When money gets tight we’ve had to go back to cheap food, but now that we have the food stamps things are a lot better. So we just need to make some adjustments and things will be good as far as diet. The other thing the doc said would generally be recommended is exercise, but with E’s hip, and the fact he walks at least 4 miles a night at work, the doc was more concerned with him not getting more walking in lol. E’s been having elbow issues lately (the past few months, but it’s gotten really bad the last three weeks or so), and the doc examined it while we were up there… he suspects some form of degenerative arthritis, though is unsure what kind, or why. There have never been injuries to that elbow, so they aren’t sure what is going on yet… we need to go get xrays done on it.
We both survived Thanksgiving… it went pretty well over all. And E survived working Thurs night/Friday morning so that’s good too. We have a storm coming in so both of us are hurting, but we would have been anyway, me from just going out to spend an hour or so with E’s family and trying to keep myself functioning well enough for that time to be sociable, especially since it was more than just his immediate family there. It was E and I, E’s mom and step dad, his half sister, his step sister and his step sister’s boyfriend. Some friends of his sisters’ stopped by at one point too. I fixed the salad I made (not all of the ingredients had found their way to our house) and sat down in a chair, where I stayed for pretty much the whole hour we were there. I was up for maybe 1/4 of our time with his family, the rest was spent sitting down. But I did ok acting normal and came home, relaxed a bit, and E and I went to sleep. I’ve been sleeping 10+ hours almost every time I’ve gone to sleep since. I think I’ve had one nap for a couple of hours, but otherwise each time I close my eyes I am out for several hours. I’m on new pain meds, which I’m sure are lending themselves to the sleep situation as well.
I think that’s all the news here…
I’ll be talking to E at some point this weekend about the name thing I mentioned in my last post, I’ll try to remember to post about it afterwards, but my memory is affected lately (more than usual) so we’ll see… I’m just so tired all the time right now while trying to adjust to the meds. Which is both good and bad…. I’m getting lots of sleep, which I really need after all the sleep issues of the last few months, but I’m also having memory issues because of being so tired. And no, I’m not taking the full prescribed dose, my doctor and I both feel I should take the least amount possible and only increase to the full dose if I have to.
Oh, and I’m also at the point in my cycle where I’d normally be getting ready for a period, so we’ll see what happens when I try to push past it with this birth control…. I’m worried there isn’t enough estrogen, but we shall see…. that’s all playing a role in how tired (and emotional) I am right now too….

OH! I never shared my news. Last week (or the week before, I can’t remember now) I received a letter in the mail from our Walmart saying I needed to get my paperwork for my leave turned in or they were going to terminate my position. My doctor had taken over two months to even get the paperwork back to me, and I needed to find my paperwork, so I got this letter about a week after finally getting my paperwork from the doc. E and I talked about it and decided that since it’s been over a year since I went on leave, and almost a year since I was released by my doctors to return, as long as I was given a chair to sit in and a certain position (people greeter), and Walmart still hasn’t let me back, that it was just time to give up on it, especially since I have applied for SSI/SSDI now. So I’m finally free of all that drama!!

Ok, there have been a lot of parts that could be called “the hardest part”, depending on what time you are looking at… but this is the one I’ve been hung up on so much lately, and the one that has affected me most overall.

It’s been a month and a half now since the miscarriage and I’m still stuck on this, though I’m also being careful to let myself feel it, rather than bottling it up or telling myself to “get over it”… I know myself well enough to know if I do that I’ll end up having to deal with it later, and having it be a lot worse.

I don’t know how I know, especially since I wasn’t far enough along for this to have been decided yet (as far as hormones and all that, I know according to christians this had all ready been decided according to Psalms) but I just know that if the pregnancy had continued we would have found out I was pregnant with a boy… well… I would have given birth to a boy if the pregnancy had gone to term… we don’t want to know gender until birth, so we wouldn’t have found out until the baby was born, but yes… I was pregnant with a baby boy… and it just hurts. The first miscarriage still gets me from time to time, but this one has affected me so much more profoundly because of so many things, and the knowing the gender thing, that’s a huge one!

I had actually held this in for awhile already. I mean that I didn’t share it with anyone, not even E, for about the first month after the miscarriage. Finally, since I was still grieving daily, and just really hurting about all of it, I told him. I had kept it from him because I knew it wouldn’t affect him like it did me (and I was right… but I knew it wouldn’t because these miscarriages haven’t affected him as much either, I’ve asked him a few times…. probably bugged him quite a bit, because I wanted to make sure he wasn’t bottling) and he wouldn’t get it. I kept it from everyone else because I didn’t feel right sharing that with other people if E didn’t even know. Finally a couple weeks ago I just had to share it with E because I knew that it was really holding me back on my grieving to not share. And since I’ve shared with two close friends. Now I’m sharing it with everyone who knows about the miscarriages, because as I open up more I feel myself slowly moving on. I still am grieving, and this is still really affecting me, but I no longer think of the miscarriage daily. Sometimes I even go two or three days without thinking about what happened. I don’t go longer than that, and it’s usually just a day or maybe two between thoughts, but it’s progress.

I think what really needs to happen is for E and I to pick a name for him. I don’t know why, I just think that would help as well… probably because this knowing the gender thing is making it harder on me and it feels like there is a little boy’s soul out there somewhere with no name. /shrug I don’t know. It’s just how I feel. I also want to do some type of memorial thing for both miscarriages… probably a scrapbook page or something. I like Sonja’s idea of a display box with her memorial stuff in it (shown with the altar thing she did for her hyst anniversary), but it’s not quite something I would do, and I think a scrapbook page, and displaying the memorial/care package we received from Yaya elsewhere is more fitting for me/us. I think all of that would really help me heal. I don’t know what name we’ll choose for this baby (we didn’t choose one for the first miscarriage, but the pregnancy wasn’t as far along, and I haven’t had as many attached feelings there as I have with this one) but I think it’s a good idea. I want to keep the name we’ve picked in the case we have a son for if we actually have a live son later on. I have some potential names picked out, but want to talk to E about them first.

I am healing, and I’ll continue to heal, but I think all of this would really help with the grieving and healing processes, as I’ve said. We shall see what happens.

• 00:24 @HeadacheSlayer I thought you said you had to switch to a diff med temp. due to being so low. #
• 00:28 @Mariah2you I only do a little per day, otherwise I wind up really bad #
• 01:09 RT @sonjathegreat: What I’ve gained from my hyst bit.ly/69BMQ4 #endo #infertility #
• 01:10 @perpetualspiral I enjoy reading it #
• 01:28 @perpetualspiral Me too!!! #
• 01:28 @perpetualspiral Enjoy your oatmeal!! #
• 01:28 @HeadacheSlayer Good luck with med stretch! #
• 01:31 @HeadacheSlayer I hope you get a better med then! ((hugs)) #
• 01:33 @perpetualspiral I hope you get something to work for you #
• 02:14 @perpetualspiral I hope your migraine goes away soon! #
• 02:28 @perpetualspiral Oh no #
• 02:37 RT @perpetualspiral: "My latest blog entry (yesterday) -> PerpetualSpiral’s Process Blog: Undisturbed by Death" ( bit.ly/92pjWR ) #
• 02:41 Definitely both! RT @perpetualspiral: Photo: iz both!! jessiebee: tumblr.com/x45483noi #
• 05:14 @anyasizer Thanks #
• 05:15 @NTBW If there have been storms in the area it is probably dirt in the pipes that needs to have a chance to run through… #
• 05:18 @NTBW It is gross, just letting you know… grew up with a well and most storms gave that to us… #

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• 03:04 @H2Ohexagon I think it’s that the image of witches and heathens are wrong… people make a lot of assumptions … :/ #
• 03:07 @HeadacheSlayer I completely understand stomach fail. #fail #FTW #
• 03:08 Had a fun time in WoW for awhile, made some new friends, now off to sleep for a couple of hours… #
• 03:09 @H2Ohexagon LOL I’ll keep you how you are… I think I’d run away if you were one of the "stereotypical" witches lol… #
• 14:23 @Shennee_Rutt @lupuschick I don’t know when my next appt will be, hopefully soon, but it’s definitely time, since the Plaq helps, but … #
• 14:23 @Shennee_Rutt @lupuschick is not enough, especially during summer and winter when we have our major storms (both seasons have storms) #
• 14:24 @H2Ohexagon I slept very well, thanks! #
• 14:24 @HeadacheSlayer I hope I’m feeling better soon too, slowly getting back on a normal diet again finally! Sorry you had to switch meds. #
• 14:25 I’m awake and I’m hungry… both are good things! #
• 14:28 RT @LupusVoice: DespiteLupus: Looking back blues bit.ly/7RNAGM Full bit.ly/8NqMsQ #
• 14:28 RT @BlendedFamily4U: Give thanks for a little and you will find a lot.— The Hausa of Nigeria #
• 15:00 @perpetualspiral I actually missed out on ur vent and wasn’t around to support you, sorry…. but you r right, it is a good way to find out. #
• 15:00 @LaMamaNaturale I’ve heard crab apples are excellent, but haven’t had the opportunity to try them….. yet… #
• 15:00 @perpetualspiral I hope you get some relief from feeling sick soon. #
• 15:01 @perpetualspiral LOL! So a big chunk of the time I was gone then…. sorry it was so long #
• 15:03 @perpetualspiral no, but I can still hope for you! #
• 15:05 @perpetualspiral miscarriage (2nd in >6mos), some type of digestive issue, lots of personal stuff #
• 15:05 @perpetualspiral and thanks! #
• 15:06 @Mariah2you Having a bit of a better day, finally getting back to more reg food… you? #
• 15:08 @perpetualspiral Yah it’s been a really rough few weeks… :/ #
• 15:12 @Mariah2you Ooooh good luck! I’ve heard good things about cymbalta #
• 15:18 @perpetualspiral If it hasn’t been hell it’s been really close ((hugs)) #
• 15:18 @perpetualspiral oh and E and I had H1N1…. yah… it’s been busy and nutty around here… :/ #
• 15:27 @perpetualspiral I’m glad I survived it to, and I’ll keep that in mind, thanks! My blog has helped, and so has my private journal. #
• 15:28 @Mariah2you I’ve heard about it, but am not familiar with it. Neighbor w chronic pain is on cymbalta w good results #
• 15:28 @Mariah2you I know that antidepressants can be huge helps for pain! #
• 15:45 Slowly catching back up on all the household stuff we’ve fallen behind on… it’s been a bad few weeks #
• 19:12 @perpetualspiral Writing helps me out a lot… need to do more of it! I’ve been reading your blog, just haven’t commented… sorry. #
• 19:12 @Mariah2you For my lupus, just Plaquenil right now, also on a bcp, nifidipine (for Raynaud’s), alleve therapy, and tramadol #
• 19:13 @Mariah2you Plus other supplements and things #
• 19:13 @Mariah2you Def. not doing too much at once. Did one load of dishes, wiped up my mess in microwave, that’s all til tomorrow. #
• 19:15 @sonjathegreat Hmmm… Duckling’s room can be dark like a cave… and we accept Alex kitties! #
• 19:15 It’s been a problem all day for me! RT @ConnieFoggles: Facebook is acting wonky. I no like. #
• 19:16 @lupuschick Heroes! #
• 19:17 @eliiiiiiiiizab My cat does lots of twitching, and sometimes makes noise also, but not meowing. #
• 19:20 Ok I think I’m in the clear for going to sleep now… had to digest food at least somewhat first… off I go, later all! #<
  /li>

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• 00:05 RT @eyzrbrn: Woman Loses Health Insurance Due to Facebook ow.ly/EmxH #
• 00:16 Ok… going to go *try* to get some sleep for a couple of hours… I doubt I’ll be able to, but I do need to try at least. #
• 15:47 @sonjathegreat LMAO! Indeed you can! #
• 22:21 Here is the story of a wonderful woman named Sara Gorman. She had written a really great book, you should check it… bit.ly/6v7bnF #
• 22:23 RT @lupuschick: Living With Lupus – Sex post.ly/DCwf #
• 22:24 @JenVanRiper LOL! I’d love to have your three year old for a few days, but logistically I don’t think it’ll work…. #
• 22:25 RT @windyhill: Sometimes I really hate the limits created by lupus. I want to dream big, but my body won’t cooperate! #
• 22:26 I’m not sure what to do with my #lupus… def talking to rheumy about prednisone next time I see her…. #

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• 23:53 @Suesuesusie I can only take so much alleve – it makes me ill if I’m not careful…. (joint pain flares) and it also doesn’t do much for me. #
• 23:54 I’m back, I don’t know how active I’ll be, but I am finally back #
• 23:55 RT @joeyotto: Interesting press on Benlysta, I wish they cared 4 helping #Lupus pts as much as their own "botoom line" bit.ly/4jkBQl #
• 23:56 Amen sister! RT @lil_lupie01: I wish that I could get my body to cooperate #lupus #fibro #spoonie #
• 23:58 RT @ARTIBILITY: Nikki White died at the age of 32.She had untreated #lupus because she could not afford health insurance.j.mp/nG66G #
• 23:59 RT @sonjathegreat: Thoughts and compassion needed bit.ly/2NUibi #endo #endometriosis #
• 00:00 RT @sonjathegreat: Sonja has a new(ish) blog post: bit.ly/jfhQr #endo #endometriosis #infertility #

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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.