My Autoimmune Life

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.

I’m going to share a link to a blog post that really touched me today (thanks go to Sonja for sharing it with me)….This post ( When I’m understood I’m healed needs to be read by everyone, it is incredible.

Yesterday the kdis and i had a vehicle to go to the park in, so we did. I also had errands to run. I ended up getting too much sun (though not at the park, it was the errands that did me in) and cauging more of a lupus flare. I also walked too much and am paying for that in my lower back anddown my left leg… today is also the day I’m doi8ng my 24 hour urine collecyion, so Im sticking close to the bed and bathroom.
Pls excuse typos – laying on my side and typing one handed.

I had a few days lupus free… I guess almost a week. I think it was last Saturday or Sunday the flare finally mostly let up, and I was brace and splint free by Wednesday. I started using them less last Monday, but still used them when I started moving around much both Monday and Tuesday, especially with my driving on Tuesday for my OB appt. I have had my mouth blisters/sores most of the last couple of weeks, but they don’t really bother me or interfere, so I don’t even think of them when I think of a flare. That’s been the only sign of my lupus until I started having preflare signs again yesterday and today. Yesterday I started having more aches in my elbows like the lumps there are trying to come back, and today I had trouble getting out of bed, and my joints are aching more. I may have to wrap up my right knee (well, Johnny may have to, he’s better at the ace wraps than I am, I don’t have a knee brace right now), but I should make it through today before it gets too bad again.
My kidney pain let up when we stopped the heparin a week and a half or so ago, but last night it came back strongly. I started having sharp stabbing pains in my left kidney late last night and the ache and whole kidney pain is back in force today. The nurse at my OB’s office is mailing down the paperwork today for me to get the labs done to check kidney function. I’ll be doing a 24 hour urine collection and they’ll be checking some things in my blood when I turn in my urine. They’ll also do some other blood work as well, but that’s not related to my lupus or kidney at all.
The pregnancy seems to be going well, the only issue is my weight, but that doesn’t seem to be affecting Littlest at all, when I had the ultrasound s/he looked right on track for gestational age, and the heartbeat is right on track as of last week.
My doctor mentioned last week that there was no way we could be feeling movement or kicking yet, and that it must be gas, but my in home nurse agrees that with my weight it seems likely we may be feeling it, and Johnny has gone through two to term pregnancies in the past and felt movement and kicking through his ex’s belly before when Gamer and Duckling were in utero, he has felt some obvious kicks. Also, as he said when I told him what OB said “You can’t wake up gas” and we can definitely get responses from Littlest when we put pressure on my belly in the right spot, or start tapping that area.
It’s monsoon season where we are at, and we’ve been having storms the last few days (at least, I can’t remember how long now)… yesterday I got some great pictures, so I thought I’d include one of the pictures that caught the double rainbow in it.

Lupus is kicking my rear end… it’s affecting all my joints, plus having some fatigue issues. My main issue right now is with my wrists and hands.
Saw the perinatologist today – thinks look great, we also had an ultrasound! The heartbeat is great, we got to see baby from lots of angles, and I have a story from this that I’ll get to at the end of this post.
I should be going off the prometrium next week when I see my OB, it’s usually only used in the first trimester, so the peri suggested talking to the OB about it.
I should also be stopping the heparin next week (YAY!!! No more home shots for awhile unless we start my B12 back up), since I don’t have a personal history of clots, I haven’t had any clots come out when I’ve bled, and I’ve not had any other issues that indicate we should continue it, since we’re now at the point where miscarriage is extremely unlikely!
I need to have my OB order a 24hour urine collection for me (peri is in another state, and not a primary doc for me, he’s just giving input on my case to my OB) to see if there is any sign of problems with my kidney function, since I’m still having pain. He is also concerned (obviously, from the start of this section) that it’s my lupus… that was the only suspicion he had.
On to my story! When we first started the ultrasound Littlest was moving all over, showing us hands and feet (if you have the password you’ll see the pictures in the next post, if you don’t have it send me an email… it’s in my contact info on one of my pages). A few minutes into it Littlest fell asleep, so the sonographer started poking at him (Most of the time for whatever reason male pronouns come out when referring to the baby, though once in awhile female ones come out instead), he woke up, stretched his arms, went back to sleep. She tried again and got a couple movements before sleep happened again. This kept happening, then she switched to 3D for a couple of minutes and got a dirty look shot at her before sleeping again (she was pressing harder at that point)…. For those who don’t know… that’s totally how I am. If I’m tired I go to sleep no matter what anyone wants, and if you try to get me to wake up you’ll either get grumped at or you’ll get me rolling over and going back to sleep lol! It was so cute and funny to see my personality already coming through some lol! I turned to Johnny and said something about how “Not that there’s any doubt, but this is totally my kid!” lol!

Ok, before I start the post I have to say I love Douglas Adams’ series The Hitchhiker’s Guide To The Galaxy!

Anyway… Last weekend I started having UTI symptoms again. I didn’t want to go to ER over the 4th of July, I knew no matter what hour I went it would be crazy, so I decided to wait until our primary care office was open again Tuesday. I went in and did a urine sample, which the doctor looked at under the microscope before coming in to see me, and it looked normal OTHER THAN having red blood cells in it, and one or two epithelial cells as well. He didn’t think there was an infection, but started me on amoxycillin just in case, and sent the rest of the sample off to the lab to be cultured. We talked about what else it could be and his first thought (with the RBCs) was kidney stones, I reminded him of my lupus as we were talking about medications, and he said that it could be lupus nephritis starting up too. He told me to call back and check for the culture results in two to three days, so I called and left a message today for someone to look in my records and see if the results were back. A few hours later I checked back and there was a message in our voicemail inbox from a woman at the clinic letting me know the results were back and perfectly clean. I’ve since stopped my antibiotic. By the time I got the message it was too late for me to reach my nurse at the OB’s office, so I’ll call in the morning and find out how they want to proceed. I’m guessing they’ll want me to head to my rheumatologist, but I do want to check and find out if they have testing they want to do as well, so I’m going to hopefully hear back with their thoughts sometime tomorrow. Thankfully this all happened before meeting the perinatologist (as I’ll only see him a few times and am unsure how to get messages to him about changes with my health), so it’ll come up during the consult we have next week with him. At this point I’m trying to keep in mind that it could still be something minor causing all the kidney pain (and other things, but kidney pain and urine odor are my main issues right now) and that my rheumatologist does keep an eye on my kidneys just to be sure nothing changes there. However, my concern is that this pregnancy has well… not been easy on my body. Don’t get me wrong, I didn’t expect it to be, but it is causing health issues for me, so that is what I’m referring to. My lupus is definitely not in remission at this point – I’m sporting a butterfly/malar rash, I’ve got a sore/blister in my mouth (which hasn’t happened in… a year? I know it’s been at least 6 or 8 months now), my joints have been bothering me, etc., so that’s not helping my worry, and my worry isn’t helping with any of that. We’ll see what the doctors office says, hopefully they’ll be able to get back to me the same day (it depends on if my ob is in or not, or on call, etc), and we can move forward with testing and treating.

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.

I’ve got to say, other than that flare while I was dealing with the UTI (and just after it) my lupus has been more or less in remission since around the time I got the positive pregnancy test, and I’m in shock! It’s nice, but highly surprising to me! I had heard this tale that pregnant women can get a break from autoimmune issues, I never expected to be so lucky though. I’m not entirely in remission, I’m having “fatigue” (both pregnancy and lupus related), which is a very incorrect word for what I’m feeling, but anyway… and I’m having some inflammation issues in my ribs, but otherwise I seem to be doing great on the lupus front. I think I’ve had my rash on and off, but I’ve dealt with that for so long I don’t even think about it (it was one of my earliest symptoms), and I’m still photosensitive… but neither of these have been unusual for me in my life, so I don’t even connect them with lupus (though I now know that they are a part of it)… I’ve had them so long that they are part of my life. The arthritis however, is not part of my life. I mean it is, I’ve had it for nearly two years now (on a regular basis I mean, it’s been longer than that since I’ve randomly had joint issues), but it’s not something I’ve accepted. In fact it’s something I am known to bitch about. Well yesterday I went to the bank (this has been needing to be done for awhile, I kept not doing it) and on the way back to the car I took the quick way from the door to the car, which included stepping up and down a couple times onto and over dividers in the drive up area. In the past I’ve had to walk extra distance to go around those as stepping up and over made me want to curl up in a ball and cry, and would leave me having difficulty walking. Yesterday I was able to walk over them without thinking about it, I didn’t even realize what I’d done until I was almost back to my car! And I almost collapsed in shock and happy tears when I realized I’d done it. When I got home I had to brag to Johnny about it. Today I have one knee that is a bit sore, but that’s more likely to be from sleeping on the couch earlier than from my lupus! This is huge! I don’t know the last time (other than the last few weeks when I’ve been lupus/arthritis pain free) that I was pain free… I think it was almost a year ago, last June or July! Like I said I’m still having some pain due to swelling in my ribs, but that doesn’t really affect my ability to walk, sit, lay down, or anything else, it’s just uncomfortable if I stretch the muscles in that area (my chest muscles always inflame if my ribs do, due to irritation) or if I put pressure right around it, but otherwise I’m great! My headaches have been allergy related (or with that migraine I blame the chocolate) and I can control them with the allergy meds that my OB approved. I think I shall have to use this remission to the fullest. I’m still going to make sure I get plenty of rest (and my body is definitely making sure I do as well), but I think I will be able to take the kids to the park this summer without any issues other than fatigue. Of course I’m not holding my breath on this, and will still be watching them from the shade whenever possible, but I might have a few months where I can enjoy the sun again! I think my cousin and I will definitely be doing a (still short) trip to the beach when I’m with her, so I can see the beach again and be in the sun for a short time, as long as I’m still feeling well on the lupus front while I’m there. That’s been one of the hardest things about leaving California, and ending up with photosensitivity that affected more than just my skin…. I miss the beach so much. And it’s funny since I hadn’t been there very much in the 4 years or so leading up to it, I think part of it is the option to go to the beach. And since I’m now starting to ramble I will wrap this post up with YAY for lupus breaks, however long it/they last!

My bladder infection seems to be slowly getting better, I’m over halfway through the antibiotics now. I have plans to do a post about UTIs, IC and pregnancy… since it’s a muddled mess and involved in why I didn’t catch the UTI sooner (besides the fact I believe it to have partially been a med reaction).

My migraine is gone but I’m still having headaches… of course with all the crap in the air from the wind, and the pressure stuff that happens with these storms it’s not surprise that I’m having headaches.

My rash has cleared up, but I’m still having skin issues in that it did a lot of damage and drying to the skin, not just where the rash ended up, but the whole area around it, so I’ve been peeling some, itching a lot, and thinking I need to use some lotion on the area so that the skin gets moisturized again and the stuff that is dead will come off and the rest will hopefully go back to normal… that whole area feels REALLY odd right now.

My lupus is back out of control…. I had a bit with this pregnancy where it was “in remission” I suppose would be the way to put it… I had a couple days where I was in pain, then I went on bedrest for the pregnancy and although I ached because our couch is uncomfortable and the way I use the mouse doesn’t help my shoulder out, I was not having lupus pain. I had a couple days after bedrest when I was still feeling pretty good, then about a week ago when the UTI really hit and I started really having signs of a reaction to the progesterone suppositories I ended up really ill again…. the dizzy spells are expected with pregnancy, as is the fatigue… the joint pain, the achiness, the migraines and the general feeling like crap… not so much.

The lupus stuff has sent my emotions spiralling even more out of control. I’m still all over the place (and with hormones and what has happened with my other pregnancies is it any wonder?), but adding the lupus pain back in when it looked like I might finally have a break from most of my pain other than some achiness and the normal pregnancy stuff has sent me into a bad place emotionally. With the pain rolling back in all the darkness did too… I had been so hopeful, but the pain, the med reactions and the UTI all happened close together and really is making it difficult to be in a good mood. I’m still excited about the pregnancy, and still hopeful it’ll work since I’m further than I have made it before, but I’m also really down about everything else. I never expected pregnancy to be easy… nothing else relating to my body is, but I still hoped that maybe I could get a bit of a break. And I hadn’t really thought it would happen until I got that time where everything was calm, I now feel as if things have been stolen back away from me, and it has really put a damper on things. Right now I’m just really hoping the ultrasound on Thursday goes well… I don’t think I could handle bad news there on top of everything else going on. I mean, I know I could, I know I’ll make it through, but I’ve had enough going on this pregnancy that I could really use some good news.

Before I say anything (and I’m guessing that at least to some of my readers this will give away what’s coming) I want to say to any face to face friends or family members who know us in person – if you are reading this news and haven’t heard it from me or Johnny personally please contact us before you get all upset, we have our reasons that this has been kept quiet, so please just let us explain and don’t start contacting other family members or friends to find out if they know, they may end up pissed off too, which is the last thing we need.

IFers and M/C sisters beware, this could be a tough post.

Ok…. the reason for my last post, and for my silence lately is that I’m pregnant. I’m currently almost six weeks along, and have known since the first Tuesday in the month. The last two weeks have been extremely rocky as I have had to go on extra hormones, I had super scary cramping… I also had the “normal” cramping and pelvic twinges and such that are just part and parcel with pregnancy, but I’m talking cramps that had me in tears and felt like the ones I’ve had with my past miscarriages. For those just joining in on the story this is pregnancy number 5 for me, no live births, which means 4 miscarriages so far (I hate having to add so far on there, but even with the treatments I’m still really scared this is going to end badly) and at nearly six weeks this is the longest I’ve ever been pregnant. Three of those miscarriages have happened in the last year – starting the day before Father’s Day last year, then one in October at 5 weeks (the only one I even had a suspicion of pregnancy with, also the longest pregnancy I had before this one), and one in March. The cramping got really bad over the first weekend that I knew I was pregnant (I wasn’t able to start my progesterone suppositories until right before the weekend, a couple days after the positive) and I put myself on bedrest. The following Monday I called my ob’s office and the nurse told me to continue the bedrest until I heard back from my doctor. A couple days later I still hadn’t heard back so I started really bothering the staff to get me an answer, they had another of the ob’s review my case and I was told to go ahead and go off bedrest. I was supposed to up my progesterone, but there just isn’t money right now (I’m working on getting on other insurance) and now that it is in my system more I’m doing better. Then, Saturday or Sunday I started feeling more and more like absolute crap. I think it was Sunday I had some leg pain (one of those side effects they warn you about as it could be a clot) and early Monday morning I started itching around my butt, so I scratched and found that the skin felt really odd, so I had Johnny look at it (this was during his lunch break thankfully) and there was a good sized rash going on. I also had been having some issues urinating, but the retention I was having was listed as a possible side effect, and the pain I was having isn’t unusual (especially since I got brave and tried to drink one of my favorite drinks a day or so before – lemonade) so I hadn’t thought anything of it. Johnny bought a baby “healing creme” for me and has been applying it and the rash looks a lot better, I think we are at the point that we can stop treating it, it’s not itching anymore and although the skin is still a bit discolored (I look bruised) it’s definitely healed up. Due to all of this they switched my progesterone from suppositories to oral, same med and dose just different way of getting it into my body. Hopefully this works and I won’t have to do any more switching of meds. They also told me to “drop by and do a urinalysis” and I replied with something along the lines of there is no dropping by your office… I’m an hour from you guys, so they sent me to our PCP office, which I did Tuesday (yesterday for me) morning when they were able to get me in. Once I got there they gave me a cup and I went and peed in it so they could run the urinalysis… it was pretty obvious to me when I was closing up the cup and putting it in the cubby for the lab that something was up… I won’t go into details, but it was really obvious. Johnny and I both had appointments, so we took care of Johnny’s appointment, after which his doctor looked at the results, said “you have an infection, does your ob want to treat it or should I”… I didn’t know so he gave me a rx (the one he always uses for pregnant women apparently) and I’m to verify with my ob’s office that it is how they want it treated and start on it. So it’s been an eventful pregnancy. When I haven’t been dealing with those things I’ve been pretty happy, but it definitely hasn’t been an easy couple of weeks, and due to my health and miscarriage history we’ve been keeping it pretty quiet…. even with the treatments they are doing (aspirin and extra progesterone) we’re still walking on eggshells and pretty nervous about the whole thing. I have my first prenatal appointment and ultrasound next Thursday, we’ll see what the results are… the u/s tech isn’t entirely sure she’ll be able to see anything at that point, but since I’ll be pretty near 7 weeks she thinks that there is a good chance.

I want to let my readers know I don’t know how much or how little this pregnancy will come up in my blog…. when I’m not sick (like with this infection) although the pregnancy is on my mind it’s not so much a topic of conversation for this blog because my AI issues seem to be in remission. Unfortunately the infection has made my lupus flare a bit more and me feel like crap, but that’s no surprise. I will be doing updates, I’m not sure how frequently. Any pictures will be in password protected posts and labeled so that no one has to see them if they don’t want to, as I know how tough it is to see baby bump pictures when you want one so bad and can’t get there. This is my space and I will post what I need to, but if it does get rough for you to see the posts please let me know in a comment or email and I’ll let you know when non pregnancy posts are up (with a link) so that you don’t have to keep checking my blog and seeing pregnancy news. I am wanting to write about the pregnancy, especially as things change with my health, but I also do know how hard it can be to read and am concerned about how the news will affect the friends I’ve made through this blog. I know on a forum/community I’m on that deals with all sorts of topics and has both fertiles and infertiles there is a pregnancy boom going on and we’ve had a couple of members needing to take a break, which … although I haven’t necessarily forgotten where I’m coming from, has made me think a bit more about what I’m saying… I want to share my happy news, and I do want to give updates in what is a high risk pregnancy situation, but I also don’t want to overwhelm those for whom this is a sensitive topic, so like I said just let me know!

I think that’s all my news for now…. Umm…. I can’t think of anything else for now.