September 2010

So cysts aren’t uncommon in my life. I rarely get documentation of anything but “functional” cysts, which have to do with ovulation, but I do end up with cysts every few months generally … I should say I get painful ones that often, I obviously get “functional cysts” every month when I’m not pregnant as I ovulate, but other than that. I have had endometriomas (two or three of htem at once) documented before, and I’ve had evidence of resolved cysts, but it’s odd for me to have anything actually show up… of course I also don’t go since I know they do resolve themselves one way or another… if I start having symptoms of something wrong with a cyst in the future I’ll go get checked, but so far they’ve never gotten dangerous.
I have had what is a suspected cyst once so far this pregnancy that resolved itself… even my OB agreed it sounded like a cyst, but by the time I was at an ultrasound appointment again 1) the pain had gone away and 2) I was far enough along that they couldn’t get a shot of my ovaries anymore. Today I noticed I’m having that pain on my left side now…. it’s just a certain type of pain, and usually since it’s pretty centered in an area it’s obvious it’s not just endo flares. We’ll see what happens this time around with the cyst. :/
In cyst related news… a family member (I will leave privacy intact and just leave it there, not my news to tell, other than how it affects me) has been diagnosed with PCOS recently. Please keep her (and her spouse) in your thoughts as they deal with this and the infertility related to it. Anyway… this helps strengthen my wonder if maybe I have a mild case of PCOS and that’s why I have these cysts, or at least why I get them as often as I do. There are a couple of family members who have had cyst issues in the past… one I suspect endo in because of the family connection there, and one who may have PCOS from what I understand… though I have heard this through another family member, the PCOS suspicion in this other relative has not been diagnosed (though there was apparently cyst activity there, again heard through another family member, who should be in the know), and the family member in this instance never mentioned cysts or any of that to me. So this could be another part of the puzzle for me. All I know… something causes me to regularly have cysts, which (thankfully) resolve themselves.
Other things (well thing…)…. I have a cold sore, and it’s driving me nuts. And… I can’t treat them the way normal people can treat theirs…. I don’t know what it is about the lupus becoming a more active part of my life, but for some reason instead of healing my cold sores, all the creams and things just make them last longer and get worse. 😦 I have yet to find (in the past two years or so) a treatment I can actually use. 😦 Hopefully one of these days I’ll at least find a way to take some of the sting out again….
A friend recommended apple cider vinegar on them… I’m going to try that. She said it stings when you do it (not surprising considering it’s vinegar, but I am grateful for the warning), but if it shortens the time and nastiness of this cold sore, I’m all for it!!

It’s likely that I’m going to be having intermittent internet time at best for awhile, I don’t know how long… Lots going on here and I’ve got IRL things to work on, then we’ll be at a different location and I don’t know the internet situation there yet.

Here’s the real reason we never go …

Mal: We are not gonna die. You know why? Because we are so… very… pretty. We are just too pretty for God to let us die. Huh? Look at that chiseled jaw!

1. The illness I live with is: Endometriosis, Fibromyalgia, Interstitial Cystitis, Vaginismus, Vulvodynia, Systemic lupus erythematosus (SLE, Lupus), allergies, depression.

2. I was diagnosed with it in the year: Allergies – mid 1990’s (officially, though we’d talked with doctors about them earlier than that); Depression – 1999 or 2000; Endometriosis – 2005; Fibro, IC, Vaginismus, Vulvodynia – 2007; SLE/Lupus – 2008

3. But I had symptoms since: A lot of them have been since I was very young, the depression was when I was a teen… not even sure on the fibro and IC, they were hidden by the others.

4. The biggest adjustment I’ve had to make is: Ummm… so many adjustments… having to plan out even trips to the store and make sure I’ve covered the what ifs, because they’ll likely happen if I’m not ready. Wearing braces on my wrists (and sometimes other joints) when I have to drive more than a couple of miles (and even then I should be wearing them for driving). Not being able to just go places, either for errands or with friends.

5. Most people assume: that because I’m young and (mostly) look healthy I couldn’t possibly have as much pain as I do.

6. The hardest part about mornings are: … this is split into two parts… getting myself out of bed when I hurt, and managing to get myself some breakfast and something to drink so I can take my medications.

7. My favorite medical TV show is: Umm… I don’t have one lol! That’s one of the genres I just can’t seem to get in to.

8. A gadget I couldn’t live without is: Our laptop. When I’m stuck in bed or on the couch I have to have it because it is my link to the outside, and my friends and family help keep me from sinking into (worse) depression. It also provides excellent distractions in the forms of websites, forums, games and so on.

9. The hardest part about nights are: Not being able to sleep in one position all night very often, even with extra pillows and padding under and around me… I end up waking up to move at least two or three times a night, a lot of times I move more often than that.

10. Each day I take __ pills & vitamins. (No comments, please) Individual pills – Up to 14 or 16. Different meds/vitamins – 7 or 8

11. Regarding alternative treatments I: do a lot of research and have probably already heard of and looked at what you may be thinking to suggest. I appreciate the suggestions (as long as they are given with the right attitude… tellign me “This WILL cure you/stop your pain/take care of your symptoms” is the fastest way to get me to ignore you and blow off your advice), but don’t be upset or offended if I tell you that either I have tried it and it didn’t help, or I won’t try it because I’ve already looked into it. I do have a supplement I take when not pregnant to help my liver, and I will be possibly adding some other things into my treatments when I can safely add things again, but Johnny and I both do research, and I discuss things with my doctors before adding them, and I take research with me if it’s likely my doctors aren’t familiar with them, so we can make the best decisions for ME and MY HEALTH ISSUES.

12. If I had to choose between an invisible illness or visible I would choose: Visible

13. Regarding working and career: At this point just being a mom takes a lot out of me… I’m hoping to work at least parttime again, but full time is not an option, and part tiime is hard. If I can start working again it will definitely have to be something flexible that can be done out of our home.

14. People would be surprised to know: just how much has to be done for me some days that I can’t do on my own, vs just how much I do on my own some days.

15. The hardest thing to accept about my new reality has been: not being able to take care of everything I need, or the mental stuff…. there are days where I can’t communicate well at all because I’m unable to come up with words….

16. Something I never thought I could do with my illness that I did was: Be as happy in my life as I am. My life is hard, and I do deal with depression, but I am blessed and I have a wonderful family and wonderful friends and so many awesome things happening in my life…. even as depression touches it all and makes it hard to deal with, I am incredibly happy at the same time… which is an entirely weird feeling.

17. The commercials about my illness: Hmmm…. I know there are commercials out there, but I don’t have tv so I never see them. I know there is a great project out there called Could I have Lupus. I think fibromyalgia may have some commercials too? I’m not really sure.

18. Something I really miss doing since I was diagnosed is: being in the sun (at all) without it causing rashes, trouble sleeping, headaches, even easier sunburning than I’ve lived with all my life. I admit I’d been in the sun less and less leading up to my lupus becoming diagnosable… but the option was always there. Now I can’t even garden in the ground, it’s all got to be in flower pots and things that can be moved into the house or in the shade where I can care for them. :/

19. It was really hard to have to give up: being able to do what I want when I want to.

20. A new hobby I have taken up since my diagnosis is: crocheting

21. If I could have one day of feeling normal again I would: want to know ahead of time so I could travel to California and spend it at the beach with my family (my kids, Johnny, my sister(s- including inlaws) and my parents and cousins and aunts and uncles and grandmothers and whoever else) and and friends.

22. My illness has taught me: to be more patient with others (generally, still learning this one lol) because I don’t know what illness or other issue could be affecting them.

23. Want to know a secret? One thing people say that gets under my skin is: but you’re too young to have all those health issues. Lupus, endo, etc. don’t know ages. Actually… I take that back… pretty much everything I have is most likely to become active during reproductive years, and most likely to do so in women…. so they do know age… young ages. My age has both nothing and everything to do with my being so ill. Nothing because it doesn’t matter how young I am I do have these, and everything because I’m am in the age range that most of these things strike in (not counting allergies or depression)….

24. But I love it when people: give me hugs, ask how I’m doing, tell me I’m strong.

25. My favorite motto, scripture, quote that gets me through tough times is: If You’re going through Hell, keep on going.

26. When someone is diagnosed I’d like to tell them: They are not alone and it is possible to live with all of this. I also wish I could give them hugs. It’s a hard road, even if it is livable.

27. Something that has surprised me about living with an illness is: I can’t think of anything, because I’ve been ill my whole life, I just didn’t have names for most of it until my 20s. I guess it would be the validation that having names for these things would bring.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hmmm… are we counting all the awesome care and spoilage I get from Johnny? When he’s able to he makes special meals for me, he brings home surprises from the store for me when he can, all the care he gives me with taking care of things I can’t do. Otherwise…. cards and gifts that have been sent, especially the ones that have been complete surprises.

29. I’m involved with Invisible Illness Week because: Well I haven’t been as involved as I’d have liked since I’ve been super busy with medical appointments this week (including traveling out of state to see one doctor because the closest one in state is at least 6 hours away)… but I’m taking part because these illnesses affect so many people, yet so few people outside of those of us affected and our close friends and family members know about them. We’ve GOT to raise awareness! And we need understanding from people!

30. The fact that you read this list makes me feel: so special and so appreciative. The fact you took the time to read this means the world to me.

To learn more about Invisible Illness Week visit this site. If you’d like to do this meme, the blank form can be found here, and please leave a comment at the bottom with a link to your post about it if it’s posted somewhere that you can do so (like a blog) so that everyone can read it!

I had my second counseling/therapy appt today. We’ve decided on a biweekly schedule.

We started out just catching up on the things that have changed in my life since we last met (Johnny’s job situation has changed, don’t want to go into it right now; the kids are back with their mom and stepdad; I’ve been put on more of a bedrest type thing, though I can still do things I’m to take it easy or I could end up on bedrest; I’ve been doing a lot of bottling of emotions; my anxiety has been higher). We ended up spending most of the appointment talking about my anxiety and ways to deal with it… she suggested breathing, distracting myself when the anxiety gets too big (though trying to deal with it in other ways first), NOT beating myself up over feeling anxious or depressed (I don’t do this quite as much over the depression when I’m feeling it, but I do over the anxiety, and after the fact with my depression… I start telling myself how silly I was for feeling upset over things, that sort of thing when I try to go do my other therapy/journaling if I wasn’t able to when it was happening), concentrating on the moment – doing things like focusing on the feeling of the keyboard under my fingers, or the blankets, or the music that is playing, that sort of thing, to relax myself. We ended up going into unexpected territory (things that we hadn’t planned on going into until after baby is born and my hormones are more stable again)…. we started talking about some of the reasons I feel how I beat myself up over feeling anxious or depressed, and that got into some family stuff before we got back on board with the original topic, but I think my counselor has a better idea of where some of my issues come from now, and we will be talking about them later on.
We went over the treatment plan she came up with, and started talking about the ideas the psychiatrist had for treating me as well… I see the psych in two weeks. It looks like I will end up being on some form of SSRI for the next couple of months, tapering the dose at the end of the pregnancy to help reduce the amount in the baby’s system so we don’t have to deal with the negative affects that happen for about 48 hours in some infants (don’t want my baby going through that, and my OB wants me weaned anyway), then back on them postpartum…. between my mental health history, the fact I’ve felt unstable enough to need to go back to therapy, and the fact I’m in several risk categories for postpartum depression this seems wise, though I am still iffy and doing research. I will definitely be on meds postpartum though, and will likely go with my psych’s suggestion, especially since before I even mentioned the possibility of meds to my OB (I mentioned that I felt I needed help and I’d be going to therapy) she said “If whoever you see feels that you should be on meds you need to go on a SSRI, and we’ll need to lower your dose before birth.” So it looks like meds here I come…. I admit to being uncomfortable with being on those meds during pregnancy, and it may not happen still, but…. I can see the reasoning behind having me on them, and I am looking at the research, and my counselor is going to find out what drug the psych wants me on and let me know next week… I plan to do research on the effectiveness with pregnancy, and the downsides, and come to the table with my own input if that drug has me too worried. I’ve been reading an excellent book about depression and pregnancy btw… and recommend it to anyone who is TTC or pregnant… ESPECIALLY if there is a history of mental illness, or if there are signs it may be starting…. The book is Pregnancy Blues (note to self – page 215 is where I’m at, I’ll check it back out later) and it has all kinds of info on depression in pregnancy, some on depression with infertility, a lot about depression in general, anxiety, and so on. Then in the second part it talks more specifically about types of depression and mental illness and the treatments (both pregnancy approved and not) for them, and goes into each different medication and the reasons they are or are not pregnancy safe and the ways to decide which med(s) to use and just all sorts of information. As I said, I HIGHLY recommend it.
I think that’s everything on that topic for now, not sure, I may come back and write more later, but I wanted to make sure I had a note somewhere about the topics we discussed today and what we talked about doing to deal with everything….

I did A LOT of driving yesterday. My perinatologist’s office (well the one I’m seen at, which he’s only at 2 days a month) is somewhere between an hour and a half and two hours away…. so I get in up to four hours of driving in a day when I have to go there, plus sitting in a doctors office, and the worry that accompanies those appointments, etc.
I know that even being in a car for an hour or so (the drive each way to my OB’s office) is hard on me, so I knew this was going to be difficult for me, and I made sure that we had nothing going on last night so that once I got home I could just sit and rest until curling up in bed. Johnny wasn’t even able to make it because this weather we’re having is so hard on us, and he’s out of work right now, so no ins. for meds, so he’s off pain meds and had himself weaned off, so there was no way he had enough pain management to be able to go with me.
I went to bed before 10 last night (though Johnny was helping me with some personal care – shaving, that sort of thing, so while I was in bed it was probably closer to 11 before I fell asleep), and ended up out of bed again at midnight or so, hurting so bad I could barely move or breath (not that my chest hurt, but just that my pain was so high it was taking effort), and trying not to throw up from the pain. I eventually started crying from the pain, which is pretty rare for me no matter how severe. Usually if I’m crying when I hurt, it’s my depression kicking in, not from how much I hurt. I finally got some food (bread with pb on it) in me, and got the pain meds taken, but it took something like an hour to kick in enough for me to consider laying down. Thankfully my friend Sara was awake and let me cry and whine and rant at her for a few while I let the emotions out, then we talked about other things until I was able to rest again.
I slept (with a lot of tossing and turning) until about 9 this morning, when I couldn’t lay in bed anymore and got up. I had breakfast and took some meds, then we had an appt to go to, which unfortunately had to be cancelled due to some vehicle issues (I may have left the lights on and killed the battery, and we couldn’t find our jumper cables in time)….
My pain has kept on going all day, and I can only tolerate so much of my pain meds in a day …. I’ve always had trouble with pain meds, but with the pregnancy I’m having even more issues with them. I’m hurting enough now that I’m considering wearing what I have on right now to my PT appt…. The only time I wear anything but jeans or shorts out (or currently maternity pants) is in the winter when I will wear a pair of warmup type pants I have that are better for dealing with the temps we get out here, they are warmer than my jeans. And they don’t look like pajamas.. these are obviously not clothes that I’d wear outside the house normally… (The ones I’m currently wearing)… but I hurt so bad that the thought of changing again into anything but these ratty old pants is making me sick and cry. 😦

I’ve been asked this more than a few times (since before finally getting pregnant with Littlest and getting him/her to stick around so long), in varying degrees of politeness and concern.
There are several things going on around and after the birth that will help, though neither of us are expecting everything to be easy. We do realize we are going to be parenting with both of us having chronic pain (and that we do so already, but it’s not the same since they are older and more able to take care of immediate needs)… and have some plans in place.
One, Johnny’s parents and half sister live in the area, and we have friends in town and in the area who (although I’m not as close to as I’d like) will help out. Two, my mom (and possibly my dad, depending on timing and how long my mom will be out for) will be out … probably in February once our snow fall is generally a bit less. After my mom goes home I have other friends and family members who want to come visit and help, so we’ll likely try to arrange it so (other than a couple of days between so we have just the three of us again) we can have people around to help for a bit. Three, part of our plan involves cosleeping, which will make it easier to take care of Littlest’s needs (I’ve been getting some practice cosleeping lately, though with a year old child, which I realize isn’t the same since he’s not waking up needing diaper changes all the time… he does have a bottle in bed with him though, and does wake up wanting it every couple hours if not more frequently) and it does definitely make it easier than having baby in a crib or cradle… though we will have a crib for times when we can’t be in bed with Littlest, or if for some reason it doesn’t work out to cosleep, never fear!), and are breastfeeding as long as I can actually do so, which means no needing to get up and do bottles, etc. … I had a point four but I can’t remember it right now, however we do have a course of action in mind, and are working on making things as … workable as we can. It helps that Johnny has had two infants in the past, so he’s able to help with the planning and getting things set up so we can take care of Littlest’s needs while taking our situation into account.

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