I don’t know where to start to update, so I”m going to start with the latest that’s going on.

 

Still grieving Lily (as I’m sure I always will), but I’m feeling alive again.

 

I had another echocardiogram a couple months ago to check on my murmur. When I went to get my records for social security the hospital included the cardiology report. Someone I know, who is a nurse, read it and explained it…. NOT OFFICIALLY! The understanding of it is that I have two small murmurs, and I have some enlargement of my heart. Now, whether this is lupus or not, and what level of concern this is, I’ll find out on Sept. 11. 

I’m still on prednisone because I ccan’t go below 5mg without neurological symptoms starting up. I’m pushing for a neuro work up when I see my rheumy.

I’m having a ton of foot pain…. the doctor I saw at the walk-in clinic thinks it is from my lupus, attacking the stationary joints in my foot. Xrays have been taken and I’ll find out more on the 11th. 

 

Lupus just seems to be out to get me, even when I’m on 3 meds strictly for putting it into remission 😦

 

The kids are great. Gamer started HS this year, and Duckling is in her last year of elementary school.

I will soon be leaving on a trip with my husband and one of our cats (who has separation anxiety, and is also my comfort animal). We will be gone for a few weeks for our kids’ winter break, as we were unable to see them this summer. We will also be spending a bit longer than that with my parents, aunts and uncles, and cousins (all in the same area as the kids live).
Although I have not done this trip driving since we moved out of state in late 2007, I have done it via train (while pregnant, and on the way home I was on rest), so I have some idea of what my body needs.
I also know our vehicle well enough to know that I will need padding on the seats.

I also will be taking plenty of snacks and drinks, making sure ALL my meds (even ones only taken once a day) are accessible, as well as other medications (OTC) that can help. I’ll make sure the icy hot is available for sore joints, and to have some heat and ice packs that are usable on the go.

Stress is a big factor to prepare for, and to do so I will be making sure I have things that help me calm down available. For me spearmint candies help to calm me down. I’ll also have my favorite blankets in reach, and be wearing extra soft clothing. I will make sure the music we have with us is calming for me. I’ll be dressing in layers to help with the fact my husband stays warmer than I do, and will want the heater down before I do. I will have my photo album close by so that I can stop and look at pictures of my family if I need to, as a reminder of why I’m putting my body through more stress than usual by doing this trip.

To help prevent some of the stress in the last couple of days before we leave I have started packing non-essential items now, and getting refills on my prescriptions so that I’m set with my medications. I am doing a bit each night so that I can go to bed after, and making sure I have plenty of time to get everything done so that it’s not needing to be rushed the last couple of nights.

As I mentioned my husband and my comfort animal will both be with me, which will help with stress as well, as I can use Mischief for comfort as needed, and my husband will be with me to talk me through as we go.

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.

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.