My Autoimmune Life

My migraines have been gone again, hopefully the next one will wait until after I have my appointments in the morning (disability stuff).
My lupus is… active (like usual) but not as bad as sometimes, which is amazing considering the storm coming in.
My endometriosis however…. it’s nasty. Each time I’ve miscarried it has gotten worse. Note: I do not know if this is actually endo, or another form of scar tissue that the miscarriages are causing, but I doubt that I’m getting scar tissue from the miscarriages outside my uterus, and I’m guessing from the pain that it’s both. My endo related pain (spots I’ve had it removed from before) is definitely worse… but my uterus is hurting more too. I’ve been pretty much stuck in bed or on the couch, and I’ve woken up crying a few times in the last couple of days due to the pain. I have no idea how Johnny is able to sleep in the same bed as me because I start making noise and writhing around when the pain gets too bad. I’m also having more and more bowel issues. :/ This is not a good sign since I do have endo that attacks my intestines. As I described it to Johnny the other night it feels like someone stuck barbed wire into my rectum, it poked through and is wrapped around organs and going through organs at an angle from the middle of my body up to just under my bottom left rib. It’s really uncomfortable, I have to be on pillows if I’m sitting (not that this is unusual, my hips are really bony), I have to be careful how I’m laying, I have to be careful what clothes I’m wearing (for both my pelvic region and my rectal pain), I have to be careful to keep from having anything touch my rear, as any pressure on it causes the pain to rear it’s ugly head. And if any one spot that feels like it’s got barbed wire in and/or around it gets pressure put on it, I’m running to the bathroom (even if there is nothing in me to run to the bathroom for) or nearly screaming from the pain… and all of the areas that are affected by that pain start hurting quickly, not just the one that has the pressure on it. This all has me pretty scared, because although the individual pain is not quite as bad as before my last laparoscopy, my overall pain is some of the worst I’ve ever had … I’d rather have the pain of my miscarriages again, surgery recovery is less painful, cysts bursting are about all I can think of painwise that compare…. I’m hoping this is just a cyst, but I have a pretty good guess that it isn’t. And I just want it over with. If I thought I could get a lap done with no money ahead of time, I’d be on my hands and knees begging in front of anyone I thought would be able to do even a tiny amount of help here. And I wonder what stage my endo is going to be at when I have my next surgery, since I was barely not stage two the last time, and I’m not far from there now, and it’ll be awhile before I can have another surgery. So I worry how much more damage and growth they are going to find when it’s that time again. I’m nowhere near my period, but I feel like I should be (and then some) with the pain I’m having…. I’m past ovulation, but not yet at my period and the pain keeps getting worse…. and I’m not exactly regular with my periods… it can be anywhere from 14 days between periods to 30 or so (the longest I’ve gone between periods since 2008 without being on continuous birth control has been 36, and I was pregnant). So I have no idea what to expect, besides the fact I’m on day 18 since I started bleeding with the miscarriage …. and like I said, it could still be at least another 10 days… and I thing it probably will be somewhere around that length. I really hope I’m wrong!

I’ve been stuck on the couch since last night due to pain issues and been on my pain meds. It’s not been a good day.
So I finally was in a position where Mischief could join me on the couch and not be hurting me while laying with me… and this picture is the result.

It made me smile to have him able to lay with me, and it made me laugh to realize he was “feeling me up” and the pain meds made it that much funnier!! I just had to turn the webcam and camera program I have on the laptop on and get a picture.

This morning (like… 2am, while Johnny was at work) I actually felt up to taking the shower I’d been needing all day yesterday. This was the first time in… I’m not even sure how long, that I’ve showered without Johnny being able to supervise if I needed it, I actually felt well enough to manage and not be scared something was going to happen, so I went for it!
Afterwards, I got annoyed with my wet hair hanging around, but it was too painful to pull it all back into one ponytail, so I went with pigtails.

The last couple of times I’ve slept the hormone/miscarriage induced dreams have hit. They haven’t been rough like in the past (though this morning’s did involve pregnancy and babies, it wasn’t a tough one like some of my others have been), but they are definitely hormone and miscarriage related… I’m currently trying to figure out why my blog isn’t showing all of those entries when I use the dream tag, I’ll link to the posts about my dreams when I can. It seems the hormones from the miscarrying are finally catching up with me, as my emotions have been more rough too. I’m definitely starting to feel the physical and emotional effects beyond just the cramping and bleeding. Also, even when my dreams aren’t related to pregnancy or miscarriage or babies, but are obviously hormone caused, they have a certain… feel or texture, I suppose, to them. There is just something different about them, even when the subject matter isn’t related to anything with pregnancy or babies. I don’t know how to explain it. That’s where I am at with the miscarriage though… on the roller coaster of dreams. It’s not my favorite place to be, that’s for sure, but it’s where I am at.

It has been since the 12th that I last wrote in my food/migraine diary about having a migraine. That’s the day I took the Excedrin Migraine and stopped it in it’s tracks. I had starting signs for one on the 17th, but after more rest it went back away. Today I have one again. I got really nauseated last night (couldn’t even finish my sandwich) and took an anti-nausea pill, slept from a bit after 3am until sometime around 7:30 am, at which point I woke up starving, had some breakfast, went back to sleep until 10:45 am or so when our neighbor who loves playing music (with LOADS of bass) very loudly woke me up, at which point I realized I had a migraine going. Two hours later the pain is manageable and more like a normal headache (though I’m sure if I don’t keep pain meds in me it’ll be a migraine again), with the help of most of a can of coca cola (yay caffeine…. ugh) and one half of one of my prescription pain pills. I have been keeping a food diary since the 12th, and also keeping track of pain levels, and any treatments I do for headaches, keeping track of meds I’m taking and when, and anything else that seems to contribute to my migraines (such as using the phone when it’s got white noise on the line, like I had to this morning when I called the landlady about our neighbor, and like last night when I had a quick phone call to make)… I notice if there isn’t static or other noise on t he line I can talk without it giving me too much of a headache, but if there is any noise on the line besides the person I’m talking to I’m prone to start having headaches. I have 3 foods I currently suspect for linking to this migraine. First is hotdogs, primarily because my pain shot back up not long after I finished having left over mac & cheese with hot dogs in it awhile ago, and we had that for dinner last night too, nausea started a couple of hours later. I had been craving corndogs about a week and a half ago…. and looking back at my diary/journal I had pretty much constant headaches (though not generally migraines) while eating those frequently. So that helps with my suspicion. The hotdogs are also a different (and cheaper) brand than the corndogs we buy (we’re corndog snobs … at least as far as what you can buy at walmart lol… they need to be one of two brands, the names of which I can’t think of… but they are the more expensive ones as the cheapies are gross…. hotdogs we’ll go cheap with though)… so that could be the cause of why hotdogs give me migraines, whereas corndogs just give me nasty (constant) headaches. My next suspect is Beef… which I’ve been trying not to eat as much of anyway. I have been having hamburgers again lately, so it’s been in my system more again. The third (and most sad) is chocolate. I still haven’t worked out what the link is there. I do know that I had been doing fine with small amounts of chocolate, but yesterday I had a bit bigger piece, and a different kind than I’d been having, and I”m having a migraine again. I think though, that it’s a coincidence with the chocolate and my headaches since I don’t always get a headache, let alone a migraine after eating it… but if I’m going into a migraine I crave it (and do pretty well not having it at that point, yesterday I wasn’t craving it, I just decided to try a piece again after not having any for a few days)… so we shall see… I’m continuing this food journal thing. Another thing to note is that this is the first migraine I’ve had since I started bleeding with the miscarriage…. I don’t know if that is linked or not… I know hormones were definitely causing some of the issues, so it could be. :/

I didn’t end up with that migraine thankfully, though I have had headaches on and off since. I managed to rest enough right after I started feeling the effects to keep it from going to a full blown migraine.
I have been much more calm and at peace this time around with the miscarriage, which is definitely a miscarriage and not just a late or bad period. That is not to be confused with unemotional or unaffected, I am still very upset, but I have been able to not freak out as much. The miscarriages last year caused me to really freak out and I was in a state of panic on top of all the other emotions, then I’d panic more because of the emotions not calming down, which would cause my emotions to become even stronger, which in turn would panic me more and so on. With all that panicking I wasn’t communicating well with Johnny, either in terms of what I needed, or in terms of understanding what he was trying to say to me, I kept overreacting to him. In turn he wasn’t communicating well with me, and it was just a big mess. Also, the second time last year I was freaked out by how much I was bleeding, the way I was still having pain and bleeding, and (after I saw my doctor) that I had to go to the hospital, and that he suspected I’d need a D&C. Johnny wasn’t able to go to the hospital with me due to work, and I knew that was the case, but it had me really upset with him. (He’d been out of work a lot due to his hip and was on the verge of some trouble, as well as the fact he’s our only income and with him missing so much work his checks had been really low.) I must brag on him for a minute though…. even though he couldn’t go with me to the hospital and he and I were upset with each other he made sure to get things set for whatever I would need when I got home. He had my pjs laid out for me, he had the couch set up so I could lay there if I needed to, he had a laptop on the couch for me, and he had my spot in bed ready for me. He’d also made sure to make comfort foods available to me (the ones we had any way) and greeted me with a hug when I got home and let him know I was back. He was obviously concerned, but there were circumstances that made it so he couldn’t go with me. This time around, since I’ve been calmer, he’s not been so freaked out by how freaked out I’ve been, and we’ve been communicating better I’ve had a lot more support in person. He hasn’t said that those are the reasons he’s been more supportive, vs less supportive last time, but looking back on those experiences, and how he’s reacted when I’ve been so freaked out by other things, that’s what was going on there. This time I’ve had back rubs, lots of cuddles, him just being around for me, and understanding if I need to let it all out. We’ve also been watching movies together, and lots of cuddles while sleeping (this generally doesn’t happen due to our pain and the locations of the pain, it’s very difficult for both of us to lay in a way that allows long term cuddles). And, after I received some money that was not set up for a specific purpose and needed for bills we were able to get the new Final Fantasy video game, so I’ve been playing that quite a bit, both as a distraction and because I enjoy those games. It’s just been a …. I don’t want to say better, but I’m not sure what else to use… different (?) experience all around. Still painful physically and emotionally, but things have been different this time as far as support and it’s just all been … easier I suppose.

Edit: the reason I felt the need to brag on Johnny for doing what he did when I was at the hospital was due to the fact although we hadn’t argued per se we had some pretty major disagreements over him not going to the dr with me, then not going to the hospital with me, and neither of us were happy with the other….. so it meant that much more to me that he did it.

As if enough weren’t happening in my body with the miscarriage, I just woke up from 4 hours of sleep a bit ago, and am having migraine symptoms….. I may be around even less the next couple days if I’m right about the migraine coming on. I’m off to go get some caffeine and hopefully break the cycle before it gets bad…

I’m on miscarriage 3 or 4 now. I don’t know for sure which because in January 2008 I had tissue come out like the last two miscarriages, and it was more painful than usual and all, but I never tested and I don’t remember the period being that much heavier than normal like the last 3. The tissue is the main thing that makes me wonder if that was a miscarriage. But I’ll never know, and until this month I’ve just left it at maybe, maybe not. However this month’s period/miscarriage is a lot like the pain that time. That was a point when we didn’t have money for me to get more birth control… this time is my first full cycle off of birth control (second period with no bcps). Although the bleeding is slowing down now (24 hours of heavy bleeding later… which since the last surgery isn’t as common) the pain is definitely still up there, and similar to the pain of my last miscarriage. Very similar in fact, just a bit lower on the pain scale…
This month I had a longer cycle than normal (if my period hadn’t started I’d be 31 days in as of the time I’m posting this) and had been having some weird symptoms for awhile now… at first I thought “I’m pregnant!”, in fact I even had what seems to have been a few spots of implantation bleeding a week ago. I tested twice last week, but never got a positive so I wrote it all off as my hormones re stabilizing from me going off the birth control again. I mean, anytime my hormones go through any change I end up with “pregnancy symptoms” (other than the spotting, which hasn’t happened before that I can think of… at least in relation to hormones regulating) so it wasn’t that much of a stretch to get myself thinking I was just going through my hormones going back to normal after the birth control. Like I said, this period has been heavy and different than normal though, so I’m going with it being another early miscarriage (the length of the pregnancy would be right in between the last two miscarriages). I have probably missed the tissue this time around, as I got up a few times during my sleeptime earlier to use the toilet and was not paying attention like I do when I’m awake to see if there was anything other than heavy bleeding. Not that I mind missing that, as much as it interests me to see it, and proves to me that it’s a miscarriage, it’s a relief not to have to see it on the emotional side of things. The thing that proves this is a miscarriage to me is that the only times I’ve cramped in this way (it’s a different type of cramp… I described it to a couple friends who have given birth they say it is a light contraction) have been the miscarriages.
I think I’ll just stop here for now, I’m sure there will be more posts dealing with all of this as time progresses, but I don’t know what else to say right now… just wanted to let you guys know what’s happening.

More to come later…

It looks like I’m having miscarriage 3 or 4……

Edit: I’ll explain why I’m not sure how many later… or you can go back through my posts…. Somewhere between Nov. 2008 and March 2009 is a post that mentions a previous possible miscarriage. And of course there were the two last year.

From Katie

1. If your doctor told you TODAY that you were pregnant, what would you say?
I’d be concerned due to having taken Excedrin Migraine this morning, but otherwise I’d be delighted!

2. Do you trust all of your friends?
Sometimes I really have to work my way past a lot of suspicions due to my divorce and all the mind games that happened before and during, but if I call someone a friend I do trust them, even if I don’t tell them every detail of my life. I have acquaintances who I don’t know well enough to trust, but like I said, actual friends are people I trust.

3. Would you move to another state or country to be with the one you love?
Been there, done that, still live in said other state with said love. <3

4. Do you believe that everything happens for a reason?
I really can’t… .some things are just senseless.

5. Can you make a dollar in change right now?
Probably lol!

6. Which one of your friends do you think would make the best doctor?
I don’t know…..

7. Are you afraid of falling in love?
Ummmm … am in love… So I’m really not sure how to answer this…. If something happened between Johnny and I, I think I’d be pretty scared to go back to love….

8. Is there someone who pops into your mind at random times?
LOL Yes!

9. What’s your favorite scar?
Hmmm…. favorite? I know several scars I’m not afraid to show off or talk about, not sure I have favorites though. There’s one above my right knee from when I ran into a barbed wire fence one night at a camp. There’s the one right by the inner elbow on my left arm from Mischief pushing off my arm when we lived in the motor home after moving here. I have one on my upper left arm where I pulled a baking sheet out onto it and didn’t realize it was resting there one night while working at the nursing home. Then there are my 5 surgery scars for my endo… my mom tried to convince me to use Vit E on them when they were still fresh so they could heal up and not scar as bad, but I’ve left them because they are my battle scars… they are what I have to show for this war I’ve been fighting for 10 years or so (though only had help with the last 4)…

10. When was the last time you flew in a plane?
Feb 2008. I don’t think I want to fly again if I can avoid it.

11. What does the last text message in your phone say?
I have no idea, I haven’t had a cell phone in almost a year now lol!

12. What features do you find most attractive in the preferred sex?
Being able to put up with me? I suppose that would be, being able to support me emotionally on my bad days, and being able to laugh with me about it all on the ones where I’m laughing.

13. Fill in the blank. I love:
food lol. Not that you’d ever guess it by looking at me or hearing my weight…

14. What is a goal you would like to accomplish in the near future?
Getting the train tickets for the kids and I for the start of summer as soon as we have the money.

15. If you were to wake up from being in a coma for an extended time who would you call first?
If Johnny wasn’t already there, him. Otherwise, probably whoever had the kids (if they weren’t Johnny)….

16. How many kids do you want to have?
I would love to have one more. However, I love the two we have, and would be perfectly happy there too (though I really hope we can figure out 50/50 custody at some point rather than just summers like we have right now due to distance and weather)

17. Would you make a good parent?
I think the common consensus is that I am.

18. Where was your default picture taken?
It’s my belly, with heating pad/EndoFEMM burns, taken in the front room.

19. What’s your middle name?
I’m not quite that open about who I am online…

20. Honestly, what’s on your mind right now?
The pain in my ovary, and the fact that it’s swollen enough to be easily findable, unlike the other.

21. If you could go back in time and change something, what would it be?
I’m really not sure I would have.

22. Who was or will be the maid of honor/ best man in your wedding?
My sister was my maid of honor when I married my ex and had a wedding. This time the “wedding” was just Johnny and I.

23. What are you wearing right now?
Blue pj pants and Jackie’s grey tshirt that she left here when she was here before.

24. Righty or Lefty?
More of a righty, though I am ambidextrous… just not wonderfully lol.

25. Best place to eat?
home, with Johnny (and the kids when they are here)

26. Favorite jeans?
Comfy ones!

27. Favorite animal?
Hmmmm….. I have ones I don’t like, but I’m not sure I have a favorite…. cat, dog, rabbit, rat…. I like all of them pretty evenly. There are others that aren’t far behind also, but those are the 4 I’d choose over any others.

28. Favorite juice?
Depends on my mood and how I’m feeling physically. I love citrus punch, but I can’t find it anywhere here.

29. Have you had the chicken pox?
When I was in elementary school… I gave it to Jackie too… I think I beat her to spots and itching by a couple of days, but I don’t remember for sure how much time between my symptoms appearing and hers.

30. Have you had a sore throat?
Lots of times

31. Ever had a bar fight?
Nope… in fact I’ve been to a bar … once? twice? Something like that… /shrug… not the big social butterfly, especially in places like that…

32. Who knows you the best?
Johnny

33. Shoe size?
7

34. Do you wear contact lenses or glasses?
Glasses

35. Ever been in a fight with your pet?
Yes………………..

36. Been to Mexico?
3 times

37. Did you buy something today?
Nope. Though Johnny bought Excedrin Migraine for me… does that kinda count?

38. Did you get sick today?
I’m having tummy problems due to the migraine meds.

39. Do you miss someone today?
Yes

40. Did you get in a fight with someone today?
No? Not that I know of anyway.

41. When is the last time you had a massage?
Johnny gave me a mini neck massage a bit ago….

42. Last person to lay in your bed?
Johnny

43. Last person to see you cry?
Probably Johnny

44. Who made you cry?
My head

45. What was the last TV show you watched?
Buffy, we’re currently watching it lol.

46. What are your plans for the weekend?
Hanging out with Johnny while he’s awake, hopefully calling the kids.

47. Who was the last person you hung out with?
Johnny. If you mean the last person who doesn’t live here…. Nikki.

48. Are you craving anything?
Chocolate…. raisins… maybe chocolate covered raisins? But I’m limiting my chocolate intake right now.

49. If you could have one thing right now what would it be?
I’m not sure….

50. Would you rather have ten kids, or none?
I really don’t know… I think it would be more fair to everyone involved for there to be none though. :/ I don’t think I have the energy to give 10 kids the attention they deserve.

51. What’s something not many people know about you?
Ummmm?? Enough people know enough different things about me that there isn’t much left that most people don’t know….

52. Is your bed against more than one of your walls?
nope

53. Have you ever swallowed a watermelon seed?
Yes… I don’t eat watermelon anymore though, and I don’t remember the last time I did…. I’m not a fan.

54. Are you there for your friends?
As much as I possibly can be. If I’m unreachable, my inbox is always open.

55. Be honest, do you like people in general?
Ummm…. generally, no… not a fan.

56. What’s your favorite movie?
I watch The Princess Bride and Never Ending Story a lot. Another would be Across The Universe.

57. Now your cell phone, what color is it?
I don’t have one.

58. Does anyone completely understand you?
I think Johnny probably comes the closest to that….

59. Do you have a reason to smile right now?
I always have reasons to smile, I may not always feel like smiling, but the reasons are always there.

60. What do you like more, Fruits or Veggies?
Depends on my mood… and what the choices are… if you give me a choice of strawberries or peas I’ll take peas. If you give me a choice of apples or cauliflower I’ll take the apples.

61. Who do you talk to the most about your problems?
Johnny, Sonja, Sara, Jen… Johnny definitely knows the most, but there are times where I get to talk to the other three more just due to work and sleep schedules (or lack of work schedules depending on who you mean)…

62. What’s your favorite color out of these? Green, Yellow, Blue, or Brown?
Blue or green, depending on the shade

63. Are you going to get hurt anytime soon by someone?
Besides my body attacking itself? I don’t know…

64. Do you currently like someone?
What kind of like?

65. What was the last song you heard someone singing and where?
Idk… I haven’t been paying attention to the music on Buffy.

66. When did you last cry?
Last night

67. How are you feeling?
Achy and upset stomach, but my head is mainly pain free.

68. If you look straight ahead past your computer screen, what do you see?
Our living room wall and the mirror I’m slowly covering in cards!

69. Favorite vegetable?
Generally Peas….

70. Last person that commented you on Myspace?
Aunt Cindy is the last I know of to comment on my status, the last to comment my profile… No idea!

71. Ever listened to a song on repeat or does it drive you crazy?
Sometimes I listen on repeat, other times it drives me nuts, depends on the song and my mood.

72. Do you want someone to call you right now?
I am waiting on some calls, but it’s not necessarily anyone I want to talk to so much as people I need to talk to in order to get some things done. Not social calls in other words.

73. Is there something you’re not looking forward to?
The caffeine crash I’m going to end up with and the possibility of my migraine returning.

74. Do you miss someone?
Definitely

75. Is something wrong right now?
YES!

76. Hair/eye color?
Auburn-ish, and hazel

77. Name something you dislike about the day you’re having?
The headache, the treatment required, and the upset stomach from said treatment.

78. What are you thinking of right now?
Being kinda cold…

79. How many months until your birthday?
3 1/2 or so

80. Have you been out side longer than 30 mins today?
Nope, I think the longest I’ve been out was 5 mins or so.

81. Where were you at 9am this morning?
Trying to rest I think…

82. Why do you feel the way you feel?
Because I do?

83. What are you listening to right now?
Buffy the Vampire Slayer

84. How has the week been?
Ummm……. interesting lol.

85. Is there something you wish you could tell someone but can’t?
Probably, though I can’t think of what right now.

86. How many windows are open on your computer?
Three.

87. In the past week have you gotten sick?
A bit.

88. What are you doing?
Working on this thing…..