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 have got to (yet again) brag on my wonderful husband. He does things most people I know wouldn’t even think to do for me. An example of this is earlier I was telling him about some Easter candy I’d seen (but not been able to find a price on) and I wanted to try it if it wasn’t really expensive. Johnny said he’d look and see if he could find the price, and if it was cheap he’d get some for me. Well he went back to work after his lunch tonight and a bit ago I checked our text program and there was a text “You don’t want that, it has aspartame”…. Before even finding out the pricing, he checked out the ingredients to make sure I can actually eat it. He pays attention to my diet restrictions, and the things we know make me ill, and actually looks into the ingredients and so on before buying it. He brings home surprises to me that he’s checked out before buying. If someone accidentally gives me something that I’m allergic to (for example I received lavender a few months ago, which causes breathing issues for me) he takes care of handling it for me and getting it either out of the house, or put somewhere that I’m not going to have contact with it until someone comes to get it.
He takes care of giving me showers or baths if there is stuff I can’t do for myself on bad days. He will assist me with shaving if I can’t do it myself.
Yes all of these things that are just part of our day to day life and they are done because they need to be… but there are people who don’t do this for their spouses no matter the circumstances (I know I’m not always the best about listening to cues from him if a soap I use bothers him… though I’ve been better and better about listening to things like that lately). And I haven’t always had this in my relationships. Granted in the past it wasn’t quite as serious with complications for my health if others didn’t keep an eye out (I try to keep an eye on my own things, but I’m stuck in the house more and more now), but now, I really need help both keeping track of things and with me not going out as much he does more and more of the shopping and errands like that, so it does fall to him to look at that sort of thing before bringing home things that won’t be eaten. In the past with people I’ve dealt with they’d just become angry that I wouldn’t eat what I’d asked for, Johnny goes around that by looking before bringing stuff home and saying “well this isn’t a good idea because”. And I can’t thank him enough for it…. I really appreciate all the care he gives me, both with the shopping, the getting baths ready for me or helping me shower, helping me get dressed or put on my shoes (I generally wear shoes I don’t have to tie because I can’t do that anymore most days, but some days I have to wear tie shoes, at which point he helps me), tucking me in bed when I go alone, or helping me with covers when we go at the same time (the blankets can be hard for me to maneuver.
Or… he just brought home regular epsom salts and some eucalyptus/spearmint epsom salts and is mixing them together so I don’t have to try to get the same amount of both into my bath… he put them in a container that is easier for me to get them out of than the bags also! 🙂
He really picks up the slack for me when I can’t do things.
Granted, some of these things (the bath salts for example) benefit him as well, but a lot of it is stuff he takes extra time and while it benefits him because things get accomplished that I couldn’t do on my own, they do take extra time and focus on top of him working full time (or as close to it as he can get with his own pain issues), he comes home and works another job helping me with things I can’t take care of. And really, taking care of me is at least another part time job, some days definitely full time. So I have a lot I am thankful to him for that he does for me.

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.

“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!

E and I have an incredible relationship. There are a lot of factors for this including good communication, having been friends for quite awhile before we changed our relationship, and continuing our friendship. Another (major) factor for this is also that he knew what he was (more or less) getting into with my health issues before we were together (other than the lupus, though we knew it was possible I’d end up with it due to symptoms and such) and I knew about his hip issue, that not in depth … I’ve learned a lot more about the whole situation there in the last year or so than I knew before that time period.
We also both deal with chronic pain, so we are more understanding towards each other if we hear “I’m too tired to do it right now” because we both know how draining the pain can be, as well as “I hurt way too much to move/talk/sleep/whatever” since we know how intense the pain can be. We may not know exactly how the other person’s pain feels, but we know how our own pain affects us and we can draw from that to help each other, and to understand each other. The issue is that at times the pain gets so bad for both of us at the same time we end up snapping at each other and getting angry because we can’t communicate (though we do realize why it’s happening, and talk about it later) which ends up stressing us out more than the pain is already doing. Another downside is that some days it’s rough getting the house cleaned or any good food made because we are both hurting. Thankfully this didn’t happen when the kids were with us, and Gamer is old enough that when it was just me awake and I was hurting a lot he would make sandwiches or get cereal for him and Duckling. Also the kids were very excited to help clean up around the house, so things were taken care of during a time that I had a rough time… the storms really got me, plus I don’t sleep as well at night as I do during the day, and I was sleeping more lightly in case the kids needed me. But anyway, this post is about E and I lol! It has made a huge difference in our marriage, and our attitudes towards and treatment of each other that we both have chronic pain. This is in comparison to my first marriage, in which I was the only one with chronic pain, and I hadn’t been diagnosed with anything yet, so it was a double whammy … especially once I was diagnosed with so many illnesses. It is fascinating how much of a difference things can make, between having been friends before anything else, having seen each other sick before hand, and knowing most of what was wrong with me, so there weren’t surprises so much as just some more difficulties added on. It’s nice to see that maybe a marriage can survive all of this. I just wish we didn’t both have to deal with chronic pain, it’s so hard to watch him be in pain, especially when my pain levels are up a lot and I can’t help him out. However, it’s nice to know that we both understand each other and can deal with what’s going on with the other.