Now trying Lithium out for a mood stabilizer….. it’s not doing fun things to my stomach, but at least although there haven’t been changes that have been too noticeable yet, my anxiety does seem to be a little less. I’m also feeling a bit less depressed, but that could just be that my hormones have shifted.

On the IUD/endo front things are… interesting. The good news is that my periods are much lighter, almost to the point of non-existent as far as bleeding goes. The bad news is that this month I’m having a terrible period pain wise….. yesterday was the worst, but today hasn’t been fun (though I have managed to just get by with OTC meds today for pain)….

September 12th-18th is Invisible Illness Week. We all know that awareness is so important, and part of events for that week is the 30 things that affect us living with illness, and perhaps will help to gain a wee bit of understanding.

1. The illness I live with is: Endometriosis, fibromyalgia, interstitial cystitis, vulvodynia, vaginismus, lupus (SLE), bipolar disorder
2. I was diagnosed with it in the year: 2005, 2006, 2007, 2008, 2011.
3. But I had symptoms since: For years… .some my entire life, some just a few years…. most since my teen years at the latest.
4. The biggest adjustment I’ve had to make is: Listening to my body
5. Most people assume: That because I’m so young I can’t be so ill.
6. The hardest part about mornings are: Getting out of bed, whether it’s actually am, or just when I wake up.
7. My favorite medical TV show is: None, I can’t stand them! – The closest I get is Sons of Anarchy, where one of the women is a doctor.
8. A gadget I couldn’t live without is: laptop/pc
9. The hardest part about nights are: When it starts cooling off more my pain goes up.
10. Each day I take a minimum of 8 pills & vitamins….. usually I add at least 4 or 5….. in the form of pain management.
11. Regarding alternative treatments I: Don’t usually take them, but I am willing to consider them and talk to my doctors about them. I do have an alternative treatment I use to help my liver with all the other meds I take.
12. If I had to choose between an invisible illness or visible I would choose: I really don’t have an answer for this. They both come with different challenges. I think I’d stick with what I know.
13. Regarding working and career: I am currently unable to work. I’m trying to get my health back enough to work part time again.
14. People would be surprised to know: How it is so hard some days and so easy on others….
15. The hardest thing to accept about my new reality has been: losing hopes and dreams, and struggling to get them back.
16. Something I never thought I could do with my illness that I did was: have a biological child, and deliver vaginally.
17. The commercials about my illness: are terrible. At least the PSAs about lupus, done by lupus patients are ok.
18. Something I really miss doing since I was diagnosed is: signing
19. It was really hard to have to give up: sign language
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: go to the beach and play in the ocean with my kids.
22. My illness has taught me: that I can and will survive through a lot of difficult times!
23. Want to know a secret? Sex hurts, and I usually pay for it afterwards, but Johnny and I still have a sex life through it all. (This is HUGE when you understand how sex is (or rather ISN’T for most people with chronic illness who I’ve spoken to)
24. But I love it when people: Try to understand and learn about what we are going through.
25. My favorite motto, scripture, quote that gets me through tough times is: “Don’t cry because it’s over. Smile because it happened.” Dr. Seuss
26. When someone is diagnosed I’d like to tell them: Research. Lots of research. Advocate for yourself off that research. If your doctor isn’t treating you how you think they should be, get another opinion (3 years into diagnosed lupus I’m going to be doing this soon, if things don’t change during my next appt, as my lupus has become more active again). Listen to your body.
27. Something that has surprised me about living with an illness is: I’m not really sure…. I guess how much of a difference just having a name for what’s wrong with me changes things.
28. The nicest thing someone did for me when I wasn’t feeling well was: make a meal for me, or clean the bathtub for me so I could take a bath.
29. I’m involved with Invisible Illness Week because: We desperately need awareness and research and understanding!
30. The fact that you read this list makes me feel: so very grateful to you and for you being in my life!

This post may be TMI, but I don’t care. As I’ve said in the past, this is my life, and if it’s TMI… stop being a part of it!

I’m starting to wonder if there isn’t something wrong with my bowels, though it could just be adhesions from the endo….. every time my bowels get upset I get sharp pains in specific areas… the same specific areas….

Also, peanut butter seems to be one of the culprits… I know regular peanut butter definitely is…. I’m not sure if this morning’s issues are the natural pb I ate yesterday (I don’t think so, since this is the first attack of the bowels, and I have had it over the last couple days fine, and with the regular pb it strikes pretty quickly) or if it’s the med withdrawals because I slept through when I was supposed to take pain meds, and since I had to use them heavily yesterday and the day before I need to wean back down…..

I just know this is terrible and hurts and is gross. 😦

I don’t share good news often enough.
In fact I’m not even sure I’ve mentioned my IUD placement at all on my blogs.

I had an IUD placed in… I believe it was early May….. and although I have some discomfort physically, over all it seems to actually be working to treat my endo! The only other thing (aside from surgery) that has helped was the birth control patch, which I had to use without any breaks, so that I wouldn’t bleed at all!

Yay for working birth control and endo control! I wanted to wait until I had at least a couple months of it before really talking about how it’s helping, and I hope it continues to, because it’s so nice to not have to worry about taking a pill daily or anything!

Infection seems to be a bit more controlled right now…. second round of antibiotics, and I’m going to be needing a partial third round to get to the appt, otherwise it’ll just come back up in the meantime.

My jaw finally doesn’t have a golf ball attached though! I’ve seriously had a ton of inflammation, and have had to use different meds to get it down so it wouldn’t swell my throat shut. I’ve still got some inflammation, but not like I was having!

Ummmm…. IUD string cutting and check was today, things look awesome, my body is actually acting like it should with the IUD (as far as the ways it works as birth control) and I seem to be getting relief from the endo…. I can’t remember the last time I had this few cramps in a month… it’s been over 3 years ago….. I had a few months where my endo wasn’t bugging me after my last surgery (4 years ago), but I had to go back on birth control to help keep it from bugging me as much 3 1/2 years ago, and 3 years ago it got bad enough again that the doctor had me on continuous birth control, which worked well until my lupus took away that option…

My lupus is flaring, but it’s seeming to be a steady flare, not one that really has anything out of the ordinary, and since my lupus is constantly at some level of a flare, I’ll take the constant i’ve had lately…. especially since *gasp* I”m able to use stair cases, and I can walk more, and everything else! I think this is a combo of the psych drugs, the weather change, and just all around starting to feel a bit better from all that’s gone on…. things are leveling out physically and emotionally for me!

I think that’s all the updates I have…..

So I have a cyst that seems to be getting ready to pop (yes… even though I’m right around the third trimester – either I hit it Monday, or last Monday was the big day, depending on where you look) I’m still dealing with cysts… I seem to have had them the whole pregnancy.
I decided awhile ago I was going to come lay down in our bed and take a nap…. after laying here for a bit I started having a lot of pain hit….. running from just below my lowest ribs on my left side, to mid thigh… .eventually it started running all the way down my left to my foot….. I ended up nauseated and having just a lot of pain…
Thankfullly I still had the laptop in our room from last night when I was trying to wind down for sleep… so I was able to roll over and grab it, start it up, and message Johnny asking him to get me ginger brew (Reeds Extra Ginger Brew is a wonderful thing), toast and some pain meds… and he did it for me. He then helped me sit up so I could actually use those things… and brought my glasses to me so I can lay here using the laptop and distract myself.
I’m so tired of cysts though… yet another sign I shouldn’t do another pregnancy… at least when I’m not pregnant they only happen every 3 cycles at the most frequent… they’ve been continuous while pregnant though. 😦

The good in all of this… that I had the laptop in here with me and was able to get Johnny’s help without having to drag myself out of bed (not sure how I’d have done so) and get those things… I think I’d have just stayed in bed sobbing until he checked on me in a couple of hours if I hadn’t had it. 😦

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!!

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 got my latest lab results back yesterday, according to the latest tests my kidneys are in normal range for the levels that were tested (creatine and protein) and my OB isn’t worried. The nurse told me to call my rheumy and get in with her (which, from what I understand, she’s on vacation) or with her on call doctor if she has one (nurse insists she must, but I’m betting if she does the on call is in another city). I’ve been in a kidney flare since Tuesday, though at times it lets up, it’s really bad today. I’m just sick today with headaches, nausea, kidney pain and all around lupus stuff. And I”m tired… I’m tired physically and I’m tired mentally.
I’m also sick and tired of having to be detective for what’s wrong with my body…. I’m NOT the medical professional, yet when they aren’t listening, or when there isn’t something glaringly wrong (though, if I have days where I can’t get out of pain due to bed I’d say there is something glaringly wrong) they don’t look into it as much as they should. I’m sick of Johnny and I having to be the ones coming up with what could be wrong, then pushing my doctors into doing tests to find out if we’re right or not. I’m sick of us having to be detectives. And I’m sick of my body and mind, at 25, failing me. There are days where I’m great, I can communicate, I can walk and move and get out of bed and run and do all sorts of things. Most days aren’t like that though. Most days it takes me awhile to find the words I’m looking for, and by the time I find the word I forget what I was talking about…. OR… I start rambling on defining the words I’m trying to use so that people can figure out what they mean. That’s one of the things that bothers me most when I start getting down from all of this… the mental affects. It’s also why most days I won’t use our phone (if it’s even working) to talk to people, and why most people can’t reach me on instant messengers either…. communication is too difficult, and either I can’t say what I want to say, or I end up with craziness coming out of my brain and going straight to my mouth or fingers before I’ve really thought about it and been able to realize that’s not what I mean or it’s now hot I should say it. Today though, as much as that’s all bothering me, what’s really bugging me is that at 25 years old my body can’t do it’s job right. I’ve got multiple diseases where my body is attacking itself, and/or not attacking what it should be. My endo seems to be a case of both (rogue tissue goes and grows where it shouldn’t – attacking itself, and my immune system says “oh, that’s part of my body, I don’t need to attack it” and doesn’t do anything to stop it – simplified version of one of the theories going around right now), my lupus is my immune system attacking other parts of my body and being over active, and I have other health issues that are more of the same (though they don’t attack me as badly)…. the other stuff is minor compared with those two generally. I’m just so sick of all this crap going on.

Im prepping for a trip (as I mentioned before) and the stress has my lupus going some, but over all, other than exhaustion (I still say it’s a combo of lupus and pregnancy) my lupus is about the same. I am so thankful for that. My endo and interstitial cystitis are both giving me issues on and off, but I expected that to continue.
Littlest still seems to be doing fine, no miscarriage, I should have an ultrasound done when I have my next appointment if I understand correctly. 🙂 Either way, things seem pretty even. I’m 8 or 8 1/2 weeks now. 😀 Every day it works out is another day further than I’ve made it before!
My shots are going well, Johnny has done all but one so far. The one I did (to prove to both of us I can do them and am able to do this trip as far as that’s concerned) left me bruised up, I pinched too hard and I was really uneven with pushing the hep into my skin, sometimes I was fast, sometimes I was barely pushing at all. I am able to do it though! 🙂 I am in shock, I’m terrified of needles, the thought of doing the shots still makes me feel sick, but I am able to do it! 😀 This is a VERY good thing. Thankfully even though we’ve proven I can do it (and of course could improve if I did it regularly) Johnny is willing to keep doing them, my dad will do them when I’m with my parents, and my cousin will do it while I stay with her and her husband, so I have a minimal amount of shots I have to do! That is a huge relief for me!
Later on today we have a nurse coming in through this program – Nurse family partnership – who will work with me through the pregnancy, then up until the baby is two years old! 🙂 She’ll be in weekly at first, then we’ll be having biweekly appointments after that until the birth. Once the birth happens we’ll meet weekly again for a bit, before going back to bi weekly. I am so thankful for the different programs in the area for pregnant women. I have been able to actually get insurance through medicaid, though it’s not fully kicked in yet; I am on WIC and getting check ups with them, as well as good food; and there is the nurse program. I think there was one other, but I haven’t heard back from them yet, so I could be mistaken (it’s been almost two weeks since I went and did my medicaid app and found about the other programs besides WIC)…. either way there are some great resources here that are helping a lot.