I have no idea how consistent I’ll be, just so you all know, but I am back to blogging here!

I’m off the haldol (It caused some scary shit that is mostly cleared up now and wasn’t all in the paperwork they give you, I’ll go into more detail when I can get to my journal), and on Abilify.
Not sure it’s doing anything for me yet, what I’m feeling may just be the result of going off the haldol.

Side effects from the abilify have included nausea/vomiting, sleep problems (which are clearing up now) and restlessness.

If it works for my bipolar I can deal with it!


On the lupus front – not so good. I’ve got to get a rheumatologist again. Nothing new, just lots of pain from the weather, and a need for more aggressive treatment so it doesn’t get worse. In the same boat with fibro.


Endo – my ovary is waking back up from it’s 2 to 3 month nap due to the haldol (I didn’t ovulate while on it) and is making me hurt pretty badly.


Grief – here’s the big one. I’ve acheived peace most days. I’m still sad, I still miss her, I always will, but there is a calmness about it all..

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!

I wrote this earlier (a few hours ago) and forgot to post it here….

Lots of depression today, for various reasons, including over a week of a costochondritis flare…. at least we believe it’s costochondritis, as the symptoms fit and it runs with both lupus and fibro.

Won’t go into the other depression reasons here. Just know that there are lots of them (as if the bipolar needs reasons to send me into depression.. HA!)….

Depression is now known as dementor attacks……

I overdid it today… well…. in my timezone it’s now yesterday … so I suppose that I should say I overdid it on Saturday.

We didn’t get a whole lot of sleep Saturday morning as we weren’t tired until around 5am (as we’ve got our sleep schedule completely turned around right now) and we woke up around noon so we could do some errands and work on fixing our sleep again….. I then went grocery shopping once my Father in law was available to drive me…. thankfully it was just a small amount of groceries…. (enough to make a double batch of taco soup). After that I did some dishes, and spent the rest of the day relaxing. I was tired, achy, and sore, but doing… well enough to think I could handle a shower later on. So a couple of hours ago (several hours of rest after all I did during the day) I took a shower. And while I was trying to wash up I noticed my hands were shaking really bad. I also felt weak and exhausted. When I got out of the shower I had to sit on the toilet for awhile to recover and I’ve been weak and exhausted since, even with food and water… I’m now in bed with the laptop, my Mischief, propped up on pillows, and watching NCIS episodes that I have playing on my computer.
I won’t be doing much of anything tomorrow at all…. I think my SIL and I will be dyeing each other’s hair, but otherwise I’ll likely be in bed all day….

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. 😦

A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water. – Eleanor Roosevelt

I like this quote, which one of my aunt’s posted as a facebook status last night, and which inspired me to write this. I know a lot of really strong women, and they’ve gone through a lot of really hot water that has made them show that strength. A lot of my friends say I’m a strong woman too… and although my feeling is that I”m just playing with the hand I was dealt and living the best I can, I suppose if I were watching someone else walk my life I’d call them strong, so looking at it that way I guess I can agree that I’m strong.

A few weeks ago (I think that’s the timeline) a friend and I were discussing one of the photos I still have from my wedding with my ex husband.

The above photo is the one being discussed. It’s a (now deceased) family friend and I, who I used to be a parttime caregiver for. I would go to his house between college classes a couple days a week and make sure he had enough water, if he needed food I’d prepare it for him and give it to him, we’d sit and watch tv together, etc. The friend I was discussing it with commented that I looked really happy and healthy in the photo. I then mentioned that none of my diagnoses were made (other than the allergies I had at the time) until after that period in time. At that point she said something about how hard it must be to deal with all of it coming on so quickly… which led to me making the list of all of the diagnoses in the past 5 years that I’m about to share.

I was diagnosed with endo Nov. 2005, Fibro and my vulvar and vaginal issues in Dec. 2006, the bladder condition (IC/Interstitial Cystitis) in Jan. 2007, I was told I’d end up with lupus (due to already having signs, just not enough of the diagnostic criteria was met yet) in March or April 2007, and diagnosed with lupus tentatively in Nov. 2008, and positively in Dec. 2008.

That seems like a lot of hot water. I’d also like to say that I have had allergies since I was a child, I had asthma as a teen (which is now in remission and has been for the past 7 years almost, but is still certainly there under the surface) and I have dealt with becoming ill more easily than most for a long time (stupid autoimmune issues). Also – 4 miscarriages in 2ish years. That’s just the health and health related stuff too, it doesn’t include the stuff that has happened in my personal life (some messes I got myself into as a teen, some messes with my parents, sexual harassment (or was it abuse or somewhere in between? I don’t know how to define it, although marital rape is a good word for at least some of it) and verbal abuse from my ex, leaving my ex, and so on)…. but each thing has made me stronger. That’s part of why I say I wouldn’t change any of it. Oh there has been a lot of stuff I’d never want to go through again… but it’s made me.. well.. me. And it’s made me strong. The fact it’s made me strong and I know I can survive, and have more of a fighting spirit towards adversity than I ever expected is part of why I’m …. why I wouldn’t change it. I can’t say I’m glad to have gone through all of it, but I’m glad for how it has shaped me. That water has been very hot, but it’s also made me a stronger person, and in some ways (though I realize I can be very bitter) it’s made me a sweeter person as well, in that I am more compassionate towards others than I think I ever could have been without going through this stuff.

My wonderful husband is currently working on the final touches that I want done to get the blog ready for unveiling (a couple of addons I wanted and was unsure how to get until he just showed me, because I was trying to do it the complicated way). The new location is centralhive.com/autoimmunelife and it should be that for quite some time so we don’t go through me moving again. Centralhive is a domain we pay for every year and it’s just been sitting around gathering dust, so we decided we might as well put it to some sort of use. 🙂

So I take part in a few different online support groups… my primary ones being weareendo.org and wearelupus.org … I’m working on becoming more active on them again, I had been, but between being busy with the kids during the summer and the miscarriages and how my mental stuff was post miscarriages I closed in on myself. So I’m taking part more again. I also have an email group I’m in (a yahoo group, I get it delivered to me) and know of some forums. My friend Jen is currently looking for some online support groups for fibro and I sent her to wearefibro and to the forums from But You Don’t Look Sick and Chronic Babe but I wanted to get other suggestions for her as well. She is in the process of being diagnosed with fibro, and having a full rheum panel run (she’s on the way to the rheum soon hopefully) and she could really use support. So we’d both appreciate suggestions (you can comment on both of our blogs, I’d love to hear the suggestions, and I know she’s appreciate having them given directly to her as well) on that end. And since the topic came up I thought I’d ask my readers what your favorite support groups are, for any illness you may deal with. It doesn’t have to be fibro, or anything I deal with, I’m just curious what good support groups are out there for different illnesses! So if you want to talk about support groups please leave me a comment with any of them! 🙂

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

Coffeesister’s awesome husband has an incredible post up about his wife and dealing with her health issues (among other things)!
I was linked to it yesterday and read it and felt so many emotions. I then proceeded to read it to E, who nodded the whole way through and understood so much of what he was saying, since it’s how he feels and overall how he deals with it as well…. (the frustrations with people’s suggestions, the frustrations of healthcare or the lack of, the watching me and knowing how difficult it is for me)… so, if you have ever wondered how E feels, what he thinks or how he deals… this isn’t written by him, this isn’t exactly how he’d write a similar post, but it will give you an understanding of how it all looks to him. It will also give you an understanding for at least some of the spouses out there of us spoonies! I won’t lump all spouses together, and not all situations are like this (healthcare, etc.) but this is how the spouses I’ve spoken with feel about all of it.