And no energy to put it all together in a way that would make sense… so I’ll sum it up.
Headaches still aren’t gone (started somewhere between Jan 1 and Jan 4… pretty sure it was the 2nd) and they ended up worse again in the middle of the week last week (It’s Sunday today right? That would make it last week? It was the 3rd of Feb or the Wednesday right around then that they got worse again).
Had a period only 24 days after the last one.. .so a 23 day cycle, while on birth control. Getting ready to ask doc to take me off the med that is making me stay on the birth control as it’s not making much difference and I’m really tired of pumping that crap in my system.
After no cysts (that E or I can think of) since right before the first miscarriage (so last June) I seem to have one again. I should say no definite cysts, at one point in the fall I thought I had one again but I never had the pain from it popping, so not sure. Definitely having all the normal symptoms this time, we’ll see if it pops or if it resolves some other way? But sudden horrible pelvic pain (post period, at a point in my cycle where I should be in THIS much pain), a weird cycle leading up to this, lots of swelling on the left side of my abdomen, pain that centers on the left ovary when the rest of the pain is more under control, and ovary tenderness in the last few days (which I was chalking up to heading to ovulation, since I do still ovulate on birth control, it just keeps my lining thin enough to not implant)….
In other news I have two blog posts I want to point my readers to. I had another one but I can’t seem to find it or remember what it was.
First off I want to point all Interstitial Cystitis patients to Jeanne’s blog post about educating Congress about IC … she received an email about it from the ICA and they want patients to email them their IC stories. (Sorry for scrunching this in here Jeanne, I just know you word it all better than I could and I want to make sure the info reaches more IC patients…)
Secondly Kate at Busted Plumbing is doing a giveaway at her blog which I recommend for all people with fertility issues or infertility! I had a great post planned out just for this, but I have not been feeling up to doing anything with it, though I do want to spread the word (Sorry for bunching your contest in with everything else Kate) so… Please go see what it’s all about and take part if you are interested.
I think that is all I wanted to post about over the last couple of days (including this morning since a couple of these things just came to my attention) … sorry that it’s a shorter post and for not giving more info about the links… I’m just really unsure how to explain all of it right now.

Ok, let me preface this by saying I’m in the middle of my period, and it started out of nowhere, through birth control and with a short cycle…..
Over all I’m doing pretty well with the miscarriages. I’m definitely a ton better than before Christmas, and so on. However, I should be somewhere in my 9th month of pregnancy now if I hadn’t had the first miscarriage, and although overall I’m doing ok with that fact, it still stings at times. I would have been due somewhere right around the last week of February if I’ve done the math right the many, MANY times I’ve done it. It isn’t easy to realize that fact, but it doesn’t hurt as much as I would have expected it to…. probably because I’ve had long enough since I was last pregnant that pregnancy isn’t running through my mind as much now… and we’ve stopped trying so my focus isn’t on pregnancy. It’s been mostly on taking care of me, taking care of E, and getting rid of these stupid headaches.
On the headache topic – as long as I take my Plaquenil twice a day like I am supposed to (I’ve only missed one dose since the beginning of the month) they aren’t as likely to turn into migraines, but they are still bad headaches that are there almost constantly. With vicodin I can get the pain down to around a 3, and when they get really bad I also take an alleve (which overall I’m avoiding due to the digestive issues that run with me taking NSAIDs) which helps bring the pain down to about the same level. I’ve been getting breaks in the pain, not frequently and not for more than a couple of hours, but I have been having breaks from the headaches finally! These breaks started somewhere around a week ago and I’ve had 3 of them.
On the topic of E – His pain is extremely bad tonight. I took him his morphine almost two hours ago and he’s still in bed unable to get up due to the pain. An hour ago I took him a vicodin (his doctor has him on morphine consistently and vicodin for breakthrough pain) and he’s still really hurting. I wish I could take his pain away. I don’t care if I’d have to feel it myself if he just weren’t in so much pain. It’s so difficult watching him hurt, and understanding chronic pain, even if I don’t understand his exact form of pain, makes it even more difficult because I know that although it becomes less with the meds (usually) it doesn’t go away, and I know how difficult that is. He had wanted to be out of bed almost two hours ago, so I took his meds to him and started waking him up, and he has been unable to get the strength and lessened pain to be able to get out of bed. 😦 I would take his pain on myself if I could to make him feel better, and I know he feels the same about my pain. It’s just so hard to watch the one you love suffer. 😦
As I mentioned I’m in the middle of an unexpected period. My PCP and I have agreed that we think the Nuva Ring will be worth a try to see how I do… I just need to make it a couple more months until I can go back off the blood pressure medication for awhile (which isn’t making enough of a difference for me to want to continue, but I want to try it through the whole winter and see how it goes) and start trying again, if the rest of my health is in order. He (my PCP) tried to recommend an IUD for me to see if it would help with the endometriosis, but we both agreed that is definitely a long term investment, and I’m hoping that going back off hormones (or changing them) will bring my health back a bit better and I’m hoping to potentially start trying for a successful pregnancy again in a couple of months, so we’ll see what happens. Obviously though this birth control pill is not for me. And although we agree with my rheumatologist that the migraines are due to my lupus, we aren’t wanting to up the estrogen content on a pill any further. I know that I can’t do progesterone only birth control pills or shots, so the Nuva Ring is our next method to try. If these migraines and nasty headaches continue for more than another month or so (Dr. Rheumy is unconcerned unless they go more than a couple months) I will be going off the birth control and blood pressure medication… this is my own decision, which will be discussed with both doctors when the time comes… but I want to go back to the basics if they continue… and since both of these were started within a couple months before the serious headaches started I’m not convinced they should be continued if the headaches continue, I want to go back to where I was before all the changes and see if I can get my body a bit more under control. Those two things and cutting out beef (mostly, other than the rare meal with hamburger) have been the only real changes in my life other than a couple stressful situations which have been cleared back up. When I was just on Plaquenil I was not doing great, but I was definitely better than this. And since I can’t take the blood pressure medication without being on birth control (other methods don’t work for us for a variety of reasons) both are going to have to go. I will be sad to go back to having my fingers not work with the things they put on your fingers in doctor’s offices to check O2 levels (and pulse?)… but that is about the only thing that has noticeably improved while on the blood pressure medication (which was supposed to help my Raynaud’s a lot more than it has) so I’m ok giving that up to get back to feeling a bit better. Going off of those medications is not guaranteed to improve my health, but I want to at least give it a try.
I had other things I wanted to talk about but I can’t remember what so I guess this is the end for now lol! 🙂 I’ll do another entry at some point with an update on things.

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!! 🙂

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!

“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!

So… I seem to “nest” before my periods lol!
I’ve noticed this since going off of the birth control last October… the couple days before my period (or sometimes the day of) I get hit with this need to cook and clean.. no matter how much pain I’m in. I can be at an 8 on the pain scale and still be forcing myself to clean because I just can’t not do it. It’s frustrating and nice at the same time!
An example of this is today. I cooked mac and cheese for us this morning, and hotdogs for E. This evening when I was chased out of bed by pain and the wind making our house creak I cleaned for 45 minutes. Well… when I say I cleaned for 45 minutes I need to clarify. I did cleaning for most of that time, but I did take a break to try to call the kids, and I did sit every few minutes and chat… but in that 45 minutes I got a load of laundry in the washing machine, another one ready to go, trash picked up, our tables straightened up a bit, all the trash taken out to the dumpster, the front room cleaned up basically as much as possible right now (need to go through the pile of blankets and jackets on the couch still), the dishes done other than a few that I need to wash by hand, and the counters wiped down.
In the past I’ve been hit with the need to bake cakes or do other things like that lol.
Oh and also today I cleaned M’s box… like actually cleaned it. We use big garbage bags as liners, that way we don’t have to buy liners, we can just use our trash bags, and that way it’s safer and easier for me to clean it. I needed to clean it yesterday, but forgot once it was warm enough to take the litter out after emptying it. So M had the bag/liner all scrunched up on top of itself. At one point (after scrunching it) he apparently had to urinate, because as I went to pull it out of the litter box I noticed the box was wet. My first thought was the same as E’s when I asked him to come grab another bag for me to put the one that had been in the box into. We both thought he had ripped through the bag at some point… though why litter hadn’t come out was a question that hadn’t crossed my mind yet, and E hadn’t seen what was going on yet when he asked. So since there was urine in the bottom of it, and it had leaked elsewhere when I pulled out the bag I decided it was time to clean the box…. We keep it clean so it doesn’t stink as bad (which is part of the reason for the bag actually… nothing gets stuck to the bottom of the box now..) I took it to our shower, which has a handheld shower head, and sprayed it all down inside and out and let it sit in there for a couple hours to dry. Now M has a nice clean box, although he doesn’t realize the box itself is clean, just that there is a clean bag and clean litter LOL!
I can’t believe I do this kind of thing every month right before my period. Or I should say every cycle to be more accurate. And it is just so odd to me. But hey, I won’t complain about actually getting things done before I’m forced onto bedrest (or couch rest, or sitting at my computer trying to distract myself)… at least I’m getting things accomplished that won’t be done for at least a few days after that.

Well, it’s been around the last 3 months or so. When I miscarried in June one of the things that was different about that period was a day or two before it started I started having pain in the lower left ribs. It was just in the front too…. a feeling like something was trying to pull them down into the rest of my pain, and also a burning/aching pain…. I don’t know how to explain it. This has also happened with every cycle since. It can start as early as day 10, though I believe that’s only happened the cycle after my miscarriage (I have just started tracking it as I’m wanting to see if there is a pattern to it now that I’m heading into my 4th period with it), since then it’s been within a couple days of my period starting. I’m now on day 19 of my cycle. Looking back at the last year (well… 10 months or so I guess) since my first period off of birth control there is a cycle that says I am likely to start my period anywhere from day 21 to day 28… and I’m going to guess (based on when I seem to have ovulated among other things) that it’s going to one of the earlier days in that range for me. 😦 That’s where I end up when you average my cycles… right around day 22 or 24. And with other symptoms I’ve been having this wouldn’t surprise me at all. So it looks like it’s time for a period again. 😦 😦 😦