My Autoimmune Life

I’ve had friends sharing pictures of their kids throughout the day with it being Hallowe’en. I also have friends with babies or toddlers. I’ve been doing okay with all of this. Then the trick or treaters hit. We didn’t have many, but there were some. One of the trick or treaters was a neighbor who has a daughter who is either one or two years old. And it all hit me. I did the math, I’ve had two miscarriages in 3 1/2 months, between the day before Father’s Day and the middle of October (the 13th or so I believe). I had been avoiding counting how close together they were, but then I got curious as to how far along I’d have been if I hadn’t miscarried. And I realized I’d have been around 5 months if the first pregnancy had stuck and around 2 months if the second had. I’ve just been going with the general “two miscarriages in six months” statement… but then I realized that I’d have only been around 5 months, and became curious how much closer together they were. So tonight I’m letting myself feel and mourn. I’ve been doing so all along, but the … 4 days or so it had become easier and I was doing…. better I suppose is the right word. I was more of myself again. Now I’m sitting here sad and thinking and hurting. And I’m letting myself, as long as I don’t sink into a pattern of darkness and depression, because I need to let myself grieve. I didn’t do that the first time around (although at the time I didn’t realize just how much I was burying) and ended up being a mess a month or month and a half later. I refuse to do that again! I will be talking to a counselor on Monday (and doing other things as well) and that will help a bunch. But for tonight I’m feeling and grieving and internalizing some. And honestly, it’s what I need to do right now.

And seen other family members get hit with different things too?

E was in ER last night, we had to go because he had a bad reaction to his latest blood pressure med. He had random facial swelling with the last one after being on it a couple of weeks (not unusual for him) and this time just one pill affected him and made him really ill. He’s also dealing with intense fatigue. Like, he was almost unresponsive to me the first several times I tried to wake him tonight when I realized his alarm never went off. I finally got him to wake up enough to look at his alarm clock and tell me what time it was and if he was going to work tonight. We decided he is not because I don’t want him out there driving like this, and I don’t think he could safely do his job either. I’m currently awake waiting for the right time to call and report that he’s not coming in again tonight due to remaining issues from last night.

One of the issues he had after starting this med was swelling and pain in his knee. The doctor said it was probably gout brought on by the type of med he was on, and that he needs to get his kidneys checked to make sure they aren’t the cause of the blood pressure issues, since people with certain types of issues respond about like this to that type of bp med. Unfortunately this in and of itself brought back a memory for me pre diagnosis with my health issues where I had to have E push me around in a shopping cart one day a couple of years ago as there weren’t any handicap carts available, and another day where I used a handicap cart. They had diagnosed me with gout without testing for it because they didn’t know what else to call the issue with my knee that had me so bad I could hardly walk… there wasn’t obvious inflammation or anything. Now we know it was one of the first flares of lupus in my joints. This was circa 2006 at some point. And with the intense fatigue he’s having all I can think of is the family members I have with FMS (my mother) or CFS (my sister) and how bad their fatigue would be. I’m not saying that’s what’s wrong with E, though if this continues I will be pushing for testing to see if they can figure anything out along that vein. It just interests (and irritates) me that I see E like this and instantly my brain jumps to “there must be something like that going on…” though if I understand correctly rheumatoid arthritis does run in his family…. so it could be that, or that could have led to him ending up with something autoimmune? UGH! I think I’m just still freaked out from the flu the other week, and seeing this going on is really worrying me.

So I forgot to blog about these in June/July after my miscarriage then, and I’m going to do so now for future reference if it happens again. Also because I need to remember to tell my PCP about them, and because I’ll need to tell my OB when we start trying again. My PCP and E’s PCP discussed my case and both of them recommend me going to a specific OB in the same city as my rheumatologist… there are no OB’s in our town/city… we have a bunch of doc’s… but no OB’s… the only one we had moved to the east coast sometime in early 2008. So we’ll have to drive an hour to an hour and a half each way for OB visits… hopefully I won’t be pregnant during the winter or that’ll suck… though I’d rather be pregnant during the winter than the summer…. for a lot of reasons! Hopefully I won’t have to have frequent OB visits. I’m also hoping to have a midwife, but there is only one in the area who travels to where we live, and she only takes low risk pregnancies, so I doubt that will be happen. I’d just rather have a midwife, and see an OB while for the fertility counseling my PCP wants us to have due to the miscarriages and to check into risks. But I know with my health issues an OB would be better, and it’s likely we’ll have a hospital birth, though I’m really hoping to avoid C-Section for a lot of reasons… thankfully E and I have talked in depth about our wishes for how the birth will be handled if we ever get that far, so he’ll be able to help advocate for me.
Anyway… I was going to post about the other ways the miscarriage is affecting me (and the way the last one did, which I hadn’t entirely realized was connected). I have been nauseated in the afternoons about an hour after we go to bed both yesterday and today. This happened after my first miscarriage too, at the same point in my cycle (right about when I “should” ovulate) and I wasn’t sure if I’d managed to get pregnant again, though I knew it was really early for pregnancy symptoms. Also, I start getting mucus changes at the same point in my cycle as normal, but they end before they change into “true ovulation discharge”… about a day before I get ovulation changes. So I’m coming to the conclusion I don’t actually ovulate since all discharge stops at that point, and I don’t get the “egg whites” on the day I should. The fact I don’t seem to ovulate (though I’m sure I do at some point, since I do end up having a period… though my cycle last time was longer than normal, and I’m guessing it will be again this time) and the nausea are (I’m assuming) more signs of my hormones regulating again. So that’s how the miscarriages mess with me (nonemotionally) a couple weeks after they happen.

So we are having our first snow of the season… it started last night.

I’m now posting my hot cocoa recipe that I forgot to post when I mentioned it before….

home made cocoa mix:
2 cups dry milk
1/2 cup unsweetened cocoa
1 cup sugar
1/4 tsp salt…
mix together, store in airtight container.

To make a cup of hot chocolate mix 1/4 cup dry mix w/ 1 cup boiling water. (makes approx. 14 cups)

How about that I like to snack while sitting at my desk? Or the fact that between social security and all the other stuff that’s going on in our lives we’ve got LOTS of paperwork going on?
Yes… I need to clean up my table… desperately… I need to find some stuff to email to my aunt… and right now that’s just not working out.

So my nightmares post miscarriage seem to be grief and emotion related rather than hormonal…. since this time the dreams waited until almost two weeks after the miscarriage to show up, and I doubt even the flu could put off my hormones trying to normalize again that far. Especially since I’m having discharge like my body is attempting to ovulate right now. This weekend I’ve finally had a chance to grieve a bit as E and I have both felt better, and everything is done on the other situations in my life that can be until tomorrow. We aren’t completely better, but E did finally manage to return to work, and I’ve been able to stay awake longer again. I think we’re still a ways away from better though.
I’ve been feeling more about it all, and crying more for the last 4 days or so. I also started having nightmares either Thursday morning or Thursday night/Friday morning, not sure which. I’d guess Friday morning since I know I woke up from the dream at around 7am, and because we had some other stressful things occur Thursday morning and afternoon so it would make sense that my dreams became chaotic during all of that.
The only one I remember clearly is the one I woke up from the other morning. I have a few family members who read my blog on a semi-regular to regular basis (how often they read it depends on which family member you are talking about lol) and I dreamed that one of them read my post about the medicine for my Raynaud’s being a possible cause of the miscarriage and emailed me saying “Your mom and I are spending time together right now, and I just read your post about your miscarriage and your medication.. and I’m telling her. And you are a fake and a fraud for calling it a miscarriage… it’s an abortion!”… Please note I would not ever conciously compare this to an abortion. They are not the same thing. My family wouldn’t call them that either. But apparently the medication thing is bugging me more than I thought apparently. And with my family abortion is a huge deal and VERY BAD… (note I say my family, I’m not going into my beliefs here, I don’t feel like turning this more political, and also my beliefs conflict with some of my family and some of my readers, so I’d rather just leave it here…. but abortion is definitely not something I see as an option for myself) so it just turned into this huge nightmare of a dream.
I can’t remember my other dreams as clearly, but that one had a huge effect on how I’ve been emotionally the last few days. I hadn’t realized just how much the med thing was bothering me, and I hate that it is bugging me so much since I had done my research and at the time that I did it they didn’t know for sure (at least not where I looked) if it was pregnancy safe or not. On top of that I hadn’t realized I was pregnant, though I was starting to suspect I should do a test… so there was nothing I would have changed… if I’d known about being pregnant the only thing I can think of is that I would have asked my pharmacist if it was safe, but otherwise…. /shrug. But I didn’t know, and I didn’t realize more research had been done on the safety of the med, so yah… I keep telling myself that, but it’s still one of those things I think of from time to time.
All of that right there, that’s one of the reasons I’m getting help mentally/psychologically, and why we’re taking a break for a bit… These miscarriages are really bugging me… that dream may have only dealt with the most recent one, but I’m hurting from both right now. And hoping that some time and perspective will help before we start trying again.

Edit added 3/21/10 – I now believe (after having another miscarriage, and a delay of around a week before the dreams hit this time) that the dreams were caused by a mix of hormones taking a bit to reach the level where I started having hormone dreams and grief …. I think both play a role. The further in the pregnancy I was the longer it seems to take for the “post miscarriage hormone dreams” to hit. With my first (confirmed) miscarriage they hit pretty quickly, but I was barely past implantation happening (I was barely in the time range past ovulation for when I would have been able to test), the second miscarriage last year (Oct. 2009) I was 5 weeks along according to the last period style of counting (about 3 1/2 to 4 weeks past ovulation), and this time I had implantation bleeding (which hadn’t happened before) and was 5 or 6 days past that when the bleeding happened. The amount of time I was into my pregnancy seems to determine how long it takes for the dreams to hit afterwards. And of course if I’d gotten far enough into the pregnancies for dreams to start being caused by them I’m sure that would affect when the dreams afterwards happen also, but so far I haven’t experienced “pregnancy dreams”… though from talking to women who’ve had “pregnancy dreams” these seem to be basically the same thing.

We are still sick with the flu. E hasn’t had a fever in a couple of days, but he’s still coughing and having dizzy spells and headaches. It’s still firmly set in my head and chest, though at least I haven’t had any stomach issues other than two days in the middle of the week. The worst part is that everything will start clearing up for a day or two, we think we are doing better, then *WHAM* we’re right back where we were, or close to it. E says he thinks he can finally go back to work tonight though, we’ll see how he does. He only has two nights left of his work week, so he may manage to make it through the rest before he needs to rest again…. Monday I need to call and see if we can get tamiflu and if they need to see us. Other things that had to do with court and other nastiness got in the way this week and there was no option on taking care of them right then. But I’m not going into that here.

All emotional side effects aside, as well as the pain that happens when I’m miscarrying, these miscarriages can’t keep happening because both times my endo has ended up worse for it.
I’m having worse cramping and pain during the month after the miscarriages. The first one made it worse, this second one has made it a lot worse. I’m having pain in more and more places, and it’s worse pain too. So we’re definitely looking at taking a break for awhile just so I can keep from getting worse. Hopefully soon I’ll be able to get another surgery done and get cleaned out and see how much damage has been done.

Ever since I realized I’d be writing about our flu again I’ve wanted to use that title!!! Yes I’m goofy at times.

E was sick all weekend, and has been improving quite a bit since yesterday. He’s still not 100% but he’s definitely doing better. His fever seems to have left for good sometime Sunday night or early Monday morning. He’s still tired, but he’s actually able to be out of bed and awake longer than 5 minutes now. When he had the fevers he was dealing with he would wake up long enough to get fluids, eat (what small amount his appetite would let him) or use the restroom, then he was back in bed and sleeping. If he’s not feeling completely better by tomorrow night (his usual first night back at work) I’m going to push for him to stay home another two nights (to get sick pay you have to have at least two nights in a row off) and get rested and well before he returns.

As I mentioned before I have had respiratory symptoms for a couple of weeks now. While E was sick they started getting worse, and throughout the last 4 days or so I’ve had a sore throat, a nasty headache, coughing fits, a cough that happens once in awhile but only one or two coughs during those spells, an elephant sitting on my chest (at least, that’s how it feels), stuffed up and/or runny nose and chills. I don’t think I’ve had all those symptoms at one time thankfully, but I’ve had all of them spread throughout the last few days, and the only ones that haven’t been together are the headache and coughing. I’m glad for that, because by themselves they are miserable enough. Usually all the other symptoms are present at some level or another…
I’ve been sleeping a lot since I went to bed yesterday afternoon. I think the last 3 hours are the longest I’ve been awake in about 24. I managed 2 hours awake this morning to watch some tv shows, but otherwise I’ve been sleeping. Apparently I’ve been a problem to be in bed with also lol! It’s not unusual for me to toss and turn, nor is it unusual for me to steal blankets. Last night however I was very bad about it and E didn’t get a whole lot of sleep. Part of why I’m still up right now (besides sitting with my head over our vaporizer) is so that he can get some sleep that isn’t interrupted by my coughing or moving around. And when he was finally getting back to sleep his mom called to check on us lol! She also wanted to let us know my FIL was going to be over this morning with Lysol spray for us… once E and I are both out of bed again I plan to spray down the mattress, and the bedding that our washer is too small to handle. We have some big blankets, and aren’t willing to risk running them through our washer and dryer. Once I’m feeling better again I’ll go to one of the local laundry mats and stick them in to wash and dry. Note to self: Go get quarters from the bank… LOL!
The vaporizer and vapor rub have both been my “friends” the last two days or so. I’ve also been taking cold & flu meds as often as I can, and drinking lots of gatorade and tea. My main food has been soup…. I like soup, but it’s getting old. I’m just glad I managed to get out of the house to get meds, food and fluids before I got to where I am. I did all of that Sunday night and started getting worse Monday morning. I think maybe the amount of time out of the house and doing stuff contributed to how I am now, and I know that the fact I didn’t get much sleep Sunday night did.

Right now my main hope is for it not to go into pneumonia, since if I’m right and we’ve got the swine flu that’s what it can turn into. Also, the majority of my issues revolve around my chest… and my lungs seem to get involved whenever I get sick.

So that’s what’s new in our house… and with our health.

E and I are discussing whether or not to keep trying right now.

I’m on a new medication (which may have cause our latest miscarriage, though there are a lot of possible reasons) which is helping with my Raynaud’s. I can actually feel my toes and they’ve been red or pink every time I’ve taken off my socks for about a week now!! I can’t remember the last time my toes were red unless I’d been running hot water over them!

However, this new medication is a Class C drug for pregnancy (and breastfeeding?)… and the information about it specifically says it can cause miscarriages and newborn death. So we’re discussing taking a break from trying and having me go on birth control for the winter to give my hands and feet a break. The problem is that the last time it took us 7 months (give or take a week or two) to get pregnant after I went off the birth control. I know it was out of my system sooner than that because of how I was feeling, but I don’t want to risk another 7 months before pregnancy, as I can only be off the blood pressure med 5 months a year due to our weather here…. so I may just go back off the blood pressure medication once I finish this month of trying it out, and wait to go on it again until after I’m done with pregnancy and breast feeding. Or pregnancy at the very least, no guarantees on whether I’ll be able to breastfeed or not, we shall see if (when?) we get there. I’m also not sure I want to wait much longer to get pregnant and have a baby considering ages and health. We’re not old by any means, but I’d like E to be able to enjoy having a baby again, and Gamer is 9 years old… I won’t say how old E is, but… well… it is a consideration. Also we’d like to have a baby before our kids are teenagers…. and Gamer is getting there…. Duckling is 4 years younger than him, but we’d really like to have another kid before either of them are teens. (For those who are wondering, I’m not giving exact amounts of years here, but I’m around 16 years older than Gamer, and 20 years older than Duckling, and for those who are just joining us, they are my (step)kids.)

I do want to take at least a short break no matter what, I need it, the last few months and the two miscarriages have been very rough on me. And I need some time to heal. Also I’d like to get some of my counseling done before getting pregnant again, just a personal preference since everything is getting so rough on me mentally right now. I firmly believe I need to take care of me before I can take care of a baby at this point… I’m not in a state where I’d want to try to deal with another pregnancy or a baby. Plus I think a break from having to focus on trying to get pregnant would be a good thing. I think after a year it’s a good idea, and I think that it will give us a chance to look at how things have gone and decide if we want to keep trying or not, it’s been a rough year on both of us, though E has handled it better (differently?) than I have… and it’s definitely affected me more… I wouldn’t say that if I hadn’t talked to him about it on different occasions and asked how he’s doing and his opinion on things, but from how our conversations have gone it’s definitely a true statement. We’re also in a different place than we were a year ago, I don’t necessarily mean physically, but financially and healthwise things have definitely taken some changes that need to be considered. Things have also changed in a lot of other aspects in our lives, and I think all of those things are important to look at before we decide what to do.

I’d be surprised if we decide to stop trying… but I think we will definitely decide to take a break for a couple months. That seems to be the way our talks were leaning. Another thing to talk about is how many more miscarriages are we willing to go through (if they continue to happen) since they have a definite toll on me physically and emotionally, and have an emotional toll on E as well. I told him while we were in the (physical) process of going through the last one that I don’t think I can handle too many more. I don’t think either of us want to go through anymore even without the rough time that I go through, and even without the emotional impact on both of us.

One thing I know for certain, as we’d talked about this even before we were ready to start trying, is that we won’t do any type of fertility treatments. My body has been through enough hormones, I’d rather not going on birth control again if we had many other options, but we really don’t. And neither of us want me on birth control long term again for sure. We’ve looked at the options, and weighed pros and cons of them, and have decided that we just can’t see doing the physical strain on my body of month after month of different meds and hormones, and also the financial cost, especially without a guarantee we’d have any more success than we have been at this point.. it’s just not someplace we are willing to go.

If we don’t manage to have another child, we already have two great children, and although they aren’t with us all the time, we are in their lives year round, and we do have an awesome cat. We’d both like another child, and Gamer and Duckling would love a little brother or sister, but we shall see what happens, and leave it at that.