So, it has been longer than I’d like to think about since I last blogged. There’s been a lot. Another disability denial, getting my medical care underway, working (VERY) parttime, doing crafty things and finishing projects.

 

There have also been skin biopsies. 

I have A LOT of moles. So many that there is actually a name for a person whose skin is in the condition mine is in.

And so far, the three we have results for have all been precancerous. One was bigger than the resident who did that specific biopsy thought, so it had to be redone. 
The latest one to be done (on my hip/thigh area, near my buttock) is looking like the scariest one yet. This is biopsy set 2, and mole #4 to be biopsied. My doctor was very concerned when he saw it. I don’t know if it will turn out to be cancerous or just a higher level of precancer, but either way, it’s worrying. 

So that’s the latest in my journey through life.

 

Oh, and it’s melanoma that all of this is pointing to, so the most serious of the skin cancers.

With a heavy heart I must say that my flare free period is over with my lupus and fibro. The good news is that I had either 3 or 4 days without it, and I *know* they can happen now, as the last time before this one that I had any truly pain free lupus time was when on steroids and trying to keep from having Lily, it lasted less than a week. The time before that was one day in June 2009. :/

At least I know they can happen without med changes (this time I had no meds added to my cocktail to change the flare!)….

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 think the grossest part of my lupus flares is waking up in a puddle of sweat, no matter how dressed or undressed I am. I have the sweats constantly when I’m in this kind of a lupus flare, but they are the worst in my sleep….. So tired of this.
I was curled up to Johnny, apparently we spent the few hours we were both in bed cuddled the entire time, and woke up in a puddle, and it’s even more gross when you end up involving your SO in it, I’m sure Johnny did NOT like being covered in my sweat, though it’s far from the worst body fluid I’ve gotten on him…
YUCK!

This is an informative post only, I do not want the pat church answers or reasons why I should still believe or any of that… I know the christian/sunday school answers… they don’t cut it….. I don’t want to be criticized for my beliefs, or told that I’m wrong. Anyone I hear that from on facebook will be removed from my friends and life…. any comments to that extent will not be approved here on my blog, I don’t usually censor comments, and will generally either ignore what’s said and not respond, or will have a conversation.. this is not one of those times!

I was raised in a strict Northern Baptist (christian) home. For the first…. 13 or 14 years of my life I was a christian, but after that I started thinking for myself and wanting to know why I believed what I believed, rather than just believing it because my parents told me to. Things happened when I was almost 16 that left me removed from the ability to question any of it, as I was fully immersed in church, private school, and only christian friends again…. and in an effort to survive that I turned off all questions in my brain and just went into a mode where I attempted to believe it all again.
As I moved out of my parents house I started questioning more again, but most of my reasons for not going to church and not believing were more related to having had to attend church as a kid, and having had to believe in order to make it in the circumstances I was living in. When I was 20 I was diagnosed (finally) with endometriosis… someone finally listened to me instead of just saying “oh it’s normal” and sending me on my way. As I learned about endo and all that was involved in it my beliefs were shaken because I didn’t understand how a loving god could either make this disease, or allow it to happen… I know all the church answers for that, but those weren’t good enough for me.
After living with an abusive husband for awhile, I went back to church because that was allowed, whereas counselling was seen as a bad thing and I was constantly berated when I went, although I wasn’t kept from going, so I just gave up on therapy as it wasn’t helping and my ex wouldn’t get marriage counselling with me, which was needed. I ended up finding solace in what I used to believe, because it was familiar, and because I wanted so desperately to believe I was lovable in the ways the Bible said/says.
After leaving my ex and admitting to all the controlling/manipulative ways my exhusband treated me, and all the sexual, mental and emotional abuse I started to question it all again….. I really wanted to know how a god who was supposed to be so loving could allow those things to happen (I know … free will is the “reason”…) and just couldn’t understand it.
I more or less just left it at “I don’t understand, and I don’t know what my beliefs are” until my lupus became more active and started becoming a daily problem. For those who don’t know… I’ve only had a couple of pain free days in two and a half years… usually due to my lupus, though once in awhile it gives me a break and something else is flaring (or more commonly, I have several pain conditions acting up at once). When that happened, and I got so ill that we were scared I was dying (I was having all kinds of chest pain and heart attack symptoms, but the hospital and tests were coming up with no answers other than that it wasn’t heart attacks) I started thinking more about my beliefs (when I was able to think about anything but how scared I was that something serious was wrong, and how much pain I was in)…. and at that point I started deciding that although I wasn’t an atheist, that was closer to my beliefs than christianity.
I have since figured out that I am agnostic. I don’t know without a doubt that there is no god, however, I am also not convinced that he is anything like the Bible and other religious texts say he is.
I refuse to believe that (and cannot understand how) a loving god or a god like in any part of the Bible could possibly be involved in or allow this to happen, the physical or emotional pain, or anything else related to the miscarriages, the health issues or so many other things, especially those that weren’t necessarily caused by anything I did or didn’t do….. I can see the free will thing in some of what’s gone on or is going on with me, but there are a lot of things that either god is directly involved in making happen, or that he allows to happen… and I can’t believe in someone that would allow all of this. Nor do I want to. I would rather have an uninvolved god or no god at all than for god to have anything to do with all of this, in any way.

I overdid it today… well…. in my timezone it’s now yesterday … so I suppose that I should say I overdid it on Saturday.

We didn’t get a whole lot of sleep Saturday morning as we weren’t tired until around 5am (as we’ve got our sleep schedule completely turned around right now) and we woke up around noon so we could do some errands and work on fixing our sleep again….. I then went grocery shopping once my Father in law was available to drive me…. thankfully it was just a small amount of groceries…. (enough to make a double batch of taco soup). After that I did some dishes, and spent the rest of the day relaxing. I was tired, achy, and sore, but doing… well enough to think I could handle a shower later on. So a couple of hours ago (several hours of rest after all I did during the day) I took a shower. And while I was trying to wash up I noticed my hands were shaking really bad. I also felt weak and exhausted. When I got out of the shower I had to sit on the toilet for awhile to recover and I’ve been weak and exhausted since, even with food and water… I’m now in bed with the laptop, my Mischief, propped up on pillows, and watching NCIS episodes that I have playing on my computer.
I won’t be doing much of anything tomorrow at all…. I think my SIL and I will be dyeing each other’s hair, but otherwise I’ll likely be in bed all day….

So today was a busy day for appts, my inhome nurse came by today (we mainly talk about symptoms and how I’m feeling, do basic monitoring of my health as far as how I’m feeling, and discuss pregnancy and babies, birth and that sort of thing)… I was NOT feeling well. It was a very miserable morning, and I’ve been feeling bad the last few days. We had a good chat, as always (I love this woman, she is fantastic… all four of us – five if you count baby, since she is a regular part of Littlest’s life too – love her), and I woke the kids up so they could see her for a few minutes before she went to her next client. She was concerned enough about how I was feeling, and about my weight, that when she went back to the office (She works out of the health department, which shares offices with WIC) she went and saw my WIC lady and talked to her between appointments and let her know I was having a rough day, and asked for an update when we got my weight. After seeing her and getting the kids breakfast I went back to bed for a couple hours before getting up for lunch and doing things with the kids (it’s been a challenging day with them as well), then went to WIC.
So the great news is that after actually losing weight before my last WIC appt and being put on Ensure 3 weeks ago (I saw my OB the week after the appt at WIC where I was last weighed, and my OB signed the rx form so I could get Ensure with WIC) I have GAINED WEIGHT! I was down to 93 lbs a month ago, and like I said, 3 weeks ago I was put onto Ensure – two bottles per day. Now I am up to 99 1/2 lbs!!! That’s right… in 3 weeks I’ve gained (Drumroll please!) SIX AND A HALF POUNDS!!!!!!! I can’t tell you how happy I was to see/hear this when we weighed me! I was nearly in tears. This is some awesome news that was desperately needed at this point, I’ve been having a hard time with a lot of things, some health related and some not so health related. I’m going to be going to therapy starting in a couple of weeks for that, but in the mean time I needed something to lift my spirits! And of course I had to come do a blog post about it so everyone could share in this wonderful news!

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.

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! 🙂 🙂