My Autoimmune Life

Remember that toe I mentioned that I broke….. (the old break, not the one I just broke)….
Well… I just kicked one of E’s shoes that was laying on the floor… and that toe is at a bit of an angle (again)…. it’s just never going to be normal again.
I was joking with E (because, well.. it’s that or cry, and I do find it to be kinda entertaining/amusing) that his shoes have done this since I moved in with his family. I then asked what I ever did to them…. which I answered “Oh … that’s right… I kicked them!” LOL
So that’s my funny and sad update for the day…..

I will hopefully be replying to everyone in the next few days….
Thank you to everyone who has left comments for me.
J

So I managed to do about the last thing that my body needs on top of everything else… and broke another bone.  This is the third bone in my body I’ve broken in my whole life, and all of them have happened since I turned 18… which is when all my autoimmune stuff started showing up more and getting worse…. though I’d had endo for about 4 or 5 years at that point, it just hadn’t been diagnosed yet.  Well… last night E was home from work for his lunch, like usual, and I followed him out to the kitchen as he was getting ready to go back to work, as usual, and M was leading him, as usual.  Well M stopped and E stopped to pet him, and I didn’t stop… because I didn’t realize they had stopped…. and I had been about a step behind E, so I doubt I would have stopped in time anyway.  Well, E had his shoes on since he was going back to work, and I walked right into his shoe…. toe first… and broke my toe next to my baby toe on my right foot.  Thing is, I didn’t even realize I broke it until tonight when we got up.  The last bone I broke was another toe, but I BROKE it… like… kicked a chair, wrapped my baby toe around said chair, and dislocated and spiral fractured it.  And the break went down into the bone that runs along that side of my foot.  I was on crutches for weeks….. and it took a long time to heal and never healed properly, I was in ER for a sprained ankle almost a year ago…. 6 months or so after breaking that toe and the ER doc asked when I had broken my toe because he could tell it was an old fracture, but he could still clearly see where it had fractured.  So this break is nothing compared to all of that.  I fell down because it didn’t really feel to good when it happened… but I was back up and walking with just a slight limp after that.  Tonight I got up when E’s alarm went off, got his clothes for him, and curled up in bed again til I realized I needed to use the bathroom.  While I was in the bathroom I realized how badly swollen and misshapen my toe was/is…. It’s definitely broken… but at least it isn’t painful…  I’m just laughing at myself over here…

Title taken from an awesome song from Buffy the Vampire Slayer – It’s the title of that song.  The whole episode “Once More With Feeling” is pretty incredible… It’s all a musical… one of my favorite things.    I guess a more fitting title would be “Going through the Motions” which is another song from the episode.  I almost think I should divide this up by songs, because different songs fit for different parts… but I don’t think I will.
When I was at the rheumatologist’s office last month she ordered blood work and a urinalysis, checking the blood for stroke and clot autoantibodies, checking my kidneys for protein and such.  Just doing the final check for my kidneys being cleared (at least for now) and checking to see if I can go back on birth control.  I made an appt with my gp’s office to get the labwork done since they have a lab, and I’m on a program that makes going through their office cheaper, since I have no insurance (and am currently out of work – have been for coming up on 3 months now).  When I got there with the lab work (keep in mind I drive an hour to get to this office) and went to the lab, the tech had never heard of the tests, and they weren’t in her book of what the actual lab can do.  So one of the other ladies called the rheumy’s office and found out (as well as possible, my rheumy is only in the office tues/thurs) what tests were meant, and the tech called the lab who does the work to find out if they could do the tests.  They said the tests that were written were very vague, and they didnt know exactly what she was asking for, so they gave her what the tests could be, and how to do them.  The ladies and I talked about whether or not to do any of them, and decided against it due to not wanting to do expensive tests and then have them be the wrong ones.  We also didn’t do the urinalysis due to the fact I’m on my period, so that would mess with the results, and the ability to do some of the tests potentially.  They suggested going to the hospital lab in the town I live in and seeing if they could do them, but I don’t have the money for them to do the wrong tests, so I’ll just have to have her order them again, and have them done at the hospital connected to the office she works out of…. that way I get them done the same day, and if there is confusion they can reach her.  Plus, I should be off my period by the time I’m up there.  I also need to talk to my primary care provider, and see if the rheumy and I work out a protocol, if he can continue treatment and I’ll go see her every six months or year, because we can’t afford the drive to her office plus the nearly $100 out of pocket just to be seen (and that’s with a discount).  If my primary agrees to that I need to talk to her on appt. day and see if there is some way we can work that out.  Otherwise, I guess I’m already at the end of the line for treating my lupus until I get insurance that will cover me or get on disability.  And then I have to hope they take medicaid, because otherwise I’ll be in the same boat for paying out of pocket… though at least I’ll have some income at that point. 
I’m hoping to either get on disability (because I’m seriously almost a prisoner in our home most of the time – and when I do go out I have to wear layers and gloves and hide as much skin as possible… I wear hoods when I go out… and usually even in stores (yah… I get weird looks for that even if it’s raining or snowing – but on sunny days?) so I just have no idea what I’m going to do this summer.  At least it doesn’t get as hot here in the summer as it does where I grew up.  I think we had one day over 100 last summer… it’s usually mid 90′s for the highs…. so if I have to go anywhere out of town I guess I’ll ask my mother in law if I can borrow her car (no a/c in ours) … she’s already said we can borrow it when we need to… If I can’t get disability, or even if I can, I’m hoping to get in with vocational rehab (somehow) and get some kind of job training to work from home… but at this point the lady up there said she had no idea when they’d start working with me even if I did qualify.  So I’m not sure where to go from here…. I’m just…. frustrated.  So frustrated.
On top of everything else… I’m really beginning to think the Plaq is affecting me mentally… but how do I know it’s not the lupus?  Lupus can cause the same issues?  And on top of that… how do I know it isn’t just everything?  I mean – just everything added up could be stressing me enough for me to have nightmares, and for me to be depressed.  I’m pretty sure the 3 hallucinations I’ve had since the beginning of January are the Plaq though… since I haven’t had them happen until I went on it.  The scariest was yesterday on the way up for the lab work that didn’t happen…… I was driving and I saw the road going the opposite direction from how it actually turns ….. luckily I was a way away from t hat turn (not a long way, but far enough that I wasn’t right on top of it) and I was done hallucinating by the time I reached it.  It was really weird realizing the road actually went the opposite way when I came out of it though.  I’m not sure what I’ll end up on if I have to go off the plaq though… from what Im reading it’s the most commonly used in the US due to the fact it is felt to be less likely to cause eye side effects.  And one of the other two anti-malarials is only available through compounding pharmacies… so that much more expensive, not likely to be covered by insurance even if I had any, and most areas (from what I understand) don’t even have this kind of pharmacy.  I’ve actually used a compounding pharmacy in the past for hormones… so I am familiar with how it works…  I’m reading up on the other antimalarial now, and it looks like it’s an injection only…. which means either doctor’s office visits to have it done or – more likely due to why i’d be taking it – home injections… E and I would be instructed on how to give them (I’d more than likely be asking him to do them) or asking my motherinlaw to come over after work and inject me… she’s a nurse.  I’m so…. so frustrated on all levels with this.  My endo and everything else has been annoying and painful… but the lupus, it’s flat out frustrating and aggravating me.  I thought I’d made changes in my life and thoughts with the others…. they caused no changes in my life compared to what this lupus is doing to me.  Am I going to lose myself over this?  Which brings me to my next topic….
I’m really beginning to think this is all driving me crazy.  I’m just slowly feeling more and more like I’m losing my grip on reality and on life.  It’s usually worst while I’m laying down trying to fall asleep, but it’s happening more and more.  I’m just … I’m not sure how to put it.  This all started when I started getting sick in September, and it’s been getting worse, so that now I wonder if I’m slipping all the time.  Though at the same time, if I’m still sane enough to wonder if I’m slipping, am I slipping at all?  Or just becoming paranoid that I’m losing it?  I’ll have to write on this more later, because right now I’m exhausted and not sure how to get what I want to across.  Seriously though, I think I’m slowly losing my mind…. and that terrifies me. 

I’ve had friends asking lately what’s going on with me and my life….
Basically right now I haven’t worked in two months, I’ve had no income, I have not been allowed to return to work (by Walmart, both of my doctors have agreed it would be good for me to go back a couple days a week), and my whole life has been reduced to E’s and my house. I also have no friends where I live, they have all moved from where I live, and my inlaws are basically the only people I know outside of my “coworkers”… I’ve become isolated because a disease (another disease) is attacking my body, and at this point I can’t even go out in the sun without getting pretty ill. On top of that my mind only works part time… I’ll be mid conversation when suddenly I can’t think of a word, or I can’t remember what was being talked about.
Hopefully I’ll be working again soon, but what’s being talked about right now, especially with the whole not going in the sun factor, is doing medical billing – if I get to do that (I’d like to) I’ll unfortunately be even more isolated because I’ll still be home all the time….. working out of the house.
So yah, that’s what’s happening with me – I’m 20 some years old, stuck i n my house, and my body is attacking itself, but I won’t even die from this, I’ll just be stuck in pain…. hopefully my meds help and I’ll be able to do more again. At this point, I’m a 20-something-year-old stuck in a 90 year old body.
So I may not be the best at keeping in touch with everyone, partially because I’m embarrassed by the state I’ve reached due to my illness, and partially because there are days I’m not even sure how to say what I’m trying to, and partially because I don’t want to burden everyone with how sick I am.
Have a nice day!

I know why you put medications into child proof bottles, but when you are prescribing medications to someone for lupus or arthritic conditions, or other issues that can limit hand function, please make sure the lid is removable!! Luckily the times I take my meds E is home, and there are those daily things I can use (once we get one) but…. it’s not easy to get into those bottles for anyone, so please make sure that the lids don’t stick or aren’t too hard to open.
Thanks
A lupus patient

I’ve been… reconnecting with some friends recently.  Some friends I’ve not kept in contact with very well (though that applies to basically everyone in my life I suppose, an issue of having all the health problems and living in a completely different state and time zone), partially due to my health, and partially because of how life gets. 
One of my friends reacted to my health in a way I would never have expected, partially due to how our conversations have gone in the past.  It  was very nice to have the offer to call any time I need or want to talk, especially with how busy said friends life is.  She and I had a very frank conversation about how some of the issues with my health have been affecting me, and I think she understands why I seem so distant at times a bit better now. 
Another friend and I haven’t kept in close contact, I’m  not sure why.  We’ve had our close moments, we’ve also had a lot of time where we have kept in touch but we just would message each other out of the blue, it wasn’t a steady or extremely close friendship, as the friendship I mentioned before has been on and off for years.  She saw a message I sent out crying about my hair, and replied to me, and we’ve been talking back and forth since.  As I said we haven’t been close, so it surprised me to get the message from  her, but at the same time, she’s one of the most caring people I know, so I’m not surprised. 
It’s been nice to get the support, and to be able to open up a bit more with some people who haven’t been as involved with my health. 
I also called and spoke with my mom earlier, and had a great conversation, she helped me out a lot.  We have had… a rocky relationship at some times (and what mother and daughter haven’t?!) but I can still call her and talk to her when I need to, even if it’s while she’s at her office working, and I’m crying about my hair.  After I told her what was going on, and how upset I was about it, she said she’d call me back, she was going to call her hair dresser and ask her for suggestions.  When Mom called back, not only had she called her hair dresser (who gave a suggestion on a brand of shampoo and conditioner) but she had called the local health food store and gave me some ideas from them.  It was great to have that support over the phone, it was also nice to receive the help and suggestions.  On top of that, she could sympathize, as she’s going through some of this as well. 
E has unfortunately been sick, and on top of that he was supposed to work tonight, so I wanted to let him sleep when that stuff happened, but when he woke up enough to talk, he gave me a huge hug and helped me a lot, not that his actions are out of the ordinary (other than the being sick and not being able to go to work) but it just reminded me of how much he means to me and how much I appreciate him. 
Another of my friends who I’ve had some contact with over the last couple months and I had a …. misunderstanding.  It has since been cleared up (I hope at least – are we clear Shadow?  I think you read this) and although we haven’t been able to talk since the clear up due to how I’ve been, she has been amazing since realizing just how much she didn’t know about what was going on with me, and about helping.  I just wish we’d have a chance to talk more again soon.  I know I can call her any time, but… it’s hard to do so, knowing she’s got the job she does and I never know quite when she’ll be home, or awake, or not working. 
I think (and hope) I’m starting to find that balance of letting people know what’s going on with me, but not letting it be my only focus (other than here and with specific people with whom it’s the normal topic of conversation) in conversation, or otherwise.  Hopefully I continue to remember this balance, and fine tune it more, as I don’t want to be “that sick girl” or something, but I want (and  probably need) people to know what’s going on with me, so that there is an understanding of my life, and why I may be distant, or that sort of thing. 

I’ve heard lupus (and some of the related medicines, though I don’t think Plaq is one) can lead to hair loss.  It’s one of the things that, quite honestly, I have been dreading the most and hoping wouldn’t happen to me.  I have….. medium to long hair… somewhere in that range… it’s down to mid back on me.  Although I’ve had it cut short a few times in my life for various reasons, I love my hair best when it’s long.  Now, long hair isn’t my best look, but  I’ve never been one to do things just to look good lol.  Well… mostly not at least.   Anyway, when I was young my hair was really thin, it started thickening more when I was … 18 or 19, and brushing it every night, plus from the time I was 18 until a couple months ago I was constantly playing with my hormones, mostly with birth control, trying to control the endo pain (though when I started I didn’t know that’s what it was) and trying to keep my period more normal.  My hair, although thicker now, is still baby fine (or close enough to it) and tangles extraordinarily easy… it always has, I’ve just become better at dealing with it over the years (including wearing it up for any job so it doesn’t look as bad at the end of the day) and it hasn’t been as much of an issue.  I was brushing my hair a bit ago, as it was quite tangled since I’ve been in and out of bed a lot the last 24 hours or so, due to being extremely fatigued again for some reason.  I got my brush into one of the tangles, and started working on it as I always do, when suddenly the whole clump came out in my hand.  I barely even felt it come out either… usually when hair comes out like that (I’ve had it happen a  time or two with how bad the tangles can get) it hurts for quite awhile, and it’s a huge, painful tug when it comes out.  This was just barely even painful.  There are a lot of things I’ve been prepared to deal with with the lupus, hair loss has been one of the things I’ve struggled the most with.  Just the thought of it is enough to send me into tears, especially since if it becomes an issue, I’m going to cut my hair short again because it looks HORRID being thin and long.  And I HATE the thought of cutting several inches off again, I like being able to put my hair in a ponytail, or being able to play with it, and E likes it long too, though that wouldn’t be enough to be a deciding factor for me if I wanted to cut it off.  I’m… really hurting at the thought of losing my hair though, both at it being thin again, and at the thought of having it short again…. it’s one of my favorite things about me lookwise, even if it doens’t know whether to be straight or curly.  I think I just need hugs right now… I’m not happy here… it hurts too much….

So due to the lupus, and the blood clotting factors involved with it, I’ve been off birth control since… the end of October now I believe… something like that. I have blood work to do (the clinic I’m seen at for my primary care has a lab, so I’m having it done there, since I know the paramedic there can get my veins to cooperate – they like to roll away from needles and are hard to get in to) to find out all my clot risks, and I’m hoping that there aren’t any so I can’t go back onto my birth control. I’m also hoping none are found so I can have a lap (laparoscopy) done again when I need one – because with clot factors and risks, doctors get very concerned about doing surgeries on patients who have risks of clots… with everything that happens in surgery. I’m trying not to worry about any of this, because I know I can’t change anything… most of this is frustration about it all. If I can’t have laps done anymore, and I can’t take birth control, my plan is to find someone to do a hysterectomy on me. I know that it isn’t likely to cure me, but at least then I shouldn’t have as many issues with it all (I really hope). I just don’t know what else to do at that point. We’ll see what happens. … I won’t even have the results of the blood work until the 27th (I think) of the month, so ….. no point getting too worked up about it right now.

So when I was at the rhuematologist’s office just before Christmas my heart was beating too fast, and I’ve been having that and high blood pressure for… awhile now. My doctor’s nurse called me later on the day of my appointment (after the appointment) and told me the doctor had been concerned, but forgot to bring up wanting to do an echocardiogram on me. I thought she meant an EKG, hence listing that as what was happening in my email and blog. I went Monday to have it done, and was told that the order for it never came through, so they needed to reschedule me. That *may* have been due to the fact I sleep during the day, so I didn’t get the nurse/assistant’s message about my appointment and to call back until after the office closed for Christmas. We rescheduled for yesterday (Friday) and I was told they would have the order by then. On… Wednesday I think… I recieved a few voicemails while I was sleeping, one was to confirm my appointment, one said to not bother showing up, they didn’t have the order yet, and the third said “oh… we got the order, come in on Friday at the scheduled time”. So I went today to have this done, and apparently while they were getting ready to call me back they realized that no one signed the order. So they told me they were trying to reach the office, but no one was returning the calls to the secretary/admissions lady for the imagery section of the hospital (she’s t he one who left me all the voicemails, and rescheduled me for Friday… I was and am completely impressed with this woman, especially with how she kept me informed, both before my appointment over the phone, and while I was sitting there waiting to go back to the ultrasound tech), so she got her supervisor and he called and was able to reach someone to get this whole situation worked out. I’m not sure if they ever got it signed while I was there, or if they were just given the go ahead, and got the signed copy faxed down later. Either way it was done. So from what the guy was asking me while doing the procedure, I’m guessing it’s a murmur, though I won’t find out for sure what’s going on until the 27th unless it’s something serious. He was asking me if I’d ever been told that I had a heart murmur (No), or if I knew if I had a heart murmur (No), and if there were heart problems or anything in my family (yes, two members of my family have had heart surgeries, and one is right around my age, I also found out later that my Dad’s Mom has a heart murmur, and my mom thinks that my dad has a minor one too), also – do I get short of breath or chest pains on physical exertion (not generally, but there are things that do cause both to happen). I’m guessing the main reason for my blood pressure and heart rate being high/fast is that I’ve been in a lot of pain the last couple months, which stresses the body; I’ve gone completely off the hormones I was on; I was on a high estrogen birth control, which can put strain on the heart; and my body has been through a lot of changes with my health lately.
So…. I have a heart murmur, or something with my heart, to add to the list of things going on with me…. the 27th can’t come soon enough in regards to my curiosity and wanting to know what’s going on lol. Though I don’t want it to come too fast, as far as the rest of my life is concerned.