January 2009


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. 

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