okay

Well, that's done. Saw the neurologist-- not the best beside manner I've ever seen, and apparently he has it in for immunologists-- sheesh! He said he was not going to "get into arguments with immunologists anymore"-- so sorry I made him go through that. I was a little ticked about it after the appt., but now that some time has passed, um I'm really ticked about it! I'm so sorry if he can't come to terms with a specific type of dr., but this is MY LIFE, dude-- seriously! ANYWAY... he has me back on neurontin and according to him, "the bad news is"... I'll have to stay on it. AND, whatever it is that is going on with me will not have (in his words), a "resolution". It has been his experience with people that have complications similar to mine that these things do not get "healed". We will look for what is causing them, but whatever it is, I was "born with", and it's not going to get "resolved". We can treat the symptoms, but the underlying cause is always going to be there. Now, why did he feel the need to say that in that manner? Could be lost in translation (he is Austrian-- no offense if you are-- don't mean it that way, he just had a different way of saying things that what I am used)-- or is he just cranky and hates immunologists so he's taking it out on me? I don't know, but it made me sad all day. He said it was "the right thing" to seek out the cause, but ultimately, it will not lead to a resolution where it will all go away.

I said before, I don't have to feel "GREAT", I just want to feel normal... is that too much to ask, I mean really? I don't think I am looking for a "solution", just a way to feel better... and now, I am TOTALLY confused, because he says the "T-cell deficiency" is basically a bogus "catch all" term and should have never been used. He said that of course t-cells are always part of the picture when you have re-current yeast infections and that the term "t-cell deficiency" should never have been used. So what does all that mean?

Not sure I know for sure yet, but he referred me to another rheumatologist to get a 2nd opinion about RA, etc. Does that mean it is or isn't an autoimmune problem? Don't know. He is having me come back in June to do a muscle / nerve conduction test before I go see the rheumatologist. He took 10 vials of blood and is testing me for Celiac and my CK count (to do with muscle-firing or something like that). And, I'm back on the neurontin. Sigh...

So, I have a follow-up with the Integrative chick in May (guess I will find out the rest of those results then). Oh, and he did say that a vitamin-D deficiency can cause muscle twitches... interesting... meanwhile, if you have an autoimmune issue and you take a vitamin D supplement in the wrong dose, it can complicate matters, so here I sit on that one.

The frustration continues... I explained it to someone tis way... it's like someone is sitting on your shoulder making the most annoying sound you can think of without stopping for months right in your ear. It eats at you until you want to scream-- that's the best way I know how to explain this. And, I am supposed to think there's no solution... no thanks... I'm betting on the fact that there is. Like I said, I don't have to feel "great"; good will do.

L

today & tomorrow

Today, we had a field trip to an art center and a play. We ate paper sack lunches indoors because it was so cold, but other than that, it was good. It was long and I am beat, but the kids were really pretty good and the play was cute. :) The stairs got me and I felt to be about 80... pretty tired of that.

Tomorrow, I have my neuro. appointment. Kind of nervous. It's such a strange thing to feel like you don't want them to find something, but then again you want them to find something. After everything, I just can't go on another wild goose chase. I also can't stand the thought of this being something really scary. It's a catch-22. I just want to feel like a normal 35 year old-- I don't have to feel "great" all the time, just "normal" would be just fine. I sat there at the play today and noticed that both of my hands were twitching, then my feet. When it's NOT happening, I try to talk myself into believing that it's just been my imagination or something, but then when it is happening, that is hard to do. And then the "voodoo" like pain-- you can't ignore that when it happens. It's very much like my body is just attacking itself or trying to "throw something out" (for lack of a better description).

Anyway... hopefully, hopefully, hopefully, I will be closer to understanding tomorrow than I am today.

L

feeling

frustrated, under-appreciated, like crap in general. I know I am not the only one to ever feel this way- I know others can definitely identify, but that is where I am at the moment. It's not just that I am physically feeling like crap, but that leads me to feeling useless and then the things that I DO do, I feel are not good enough... for me or anyone else. I don't know if it is just me putting that pressure on myself and it's just built up over time or what. But, Thomas has even been shall we say less than appreciative of my efforts. This is my "thoughtful" kid. So it makes me wonder if maybe I just suck at everything right now.

Andrew came home to a messy house since I was sick while he was gone, and I have been very sensitive to little comments here and there. Thomas complained while Andrew was gone because he didn't get to do some things because "Daddy wasn't home" AND I was sick, so he really hurt my feelings with a couple of comments ha made about not getting to do some things. The house is still a mess because we had the pinewood waste of time yesterday, which has me further upset. They judged the council race TOTALLY differently than they did the pack and district and so Thomas didn't even place with his awesome car. He tried really hard not to, but he cried. IT broke. my. heart. And now that HE is okay with it, I'm kinda mad because they judged it differently, and we just KNEW he was going to at least place for design.

Today, I HAVE to clean, we HAVE to get the recyclables out of here and I HAVE to get my planning done. There's not enough weekend. And, I HURT again. Um, yeah, you might say I'm in a valley today. Sigh... and I shouldn't be on here, got lunch beeping at me on the oven timer... I need a good day in the sun... Off to the beeping for now.

L

so...

this week is FINALLY over! Good grief, this was one long week! I'm finally feeling better-- just have the things I have all but grown accustomed to at this point. I mentioned yesterday that I got an earlier appointment with a neurologist at last. I find it interesting that my GP was able to get an appointment for less than a week away, while the Integrative dr. had made one for me that was going to be TWO MONTHS away. Makes me wonder if they take her seriously, ya know? Anyway, I will be so glad to have that over with! Normally, I would probably just be happy with ruling some things out that have me worried, but this has been going on for so long, that I REALLY want an actual ANSWER, so I hope something will point us in the right direction. I'm really tired of this.

The Integrative dr. gave me some immune building stuff, vitamin B complex and fish oil capsules. I started getting my symptoms of a yeast infection again, so I quit taking them. I don't want to not do what I need to do, but you know, when one of the primary problems returns that quickly, it makes you wonder why you're taking something... I just want *something* to work...

Anyway, Andrew put tons of pictures up from his week at GMA (Gospel Music Association week-- this is what is part of the Dove Awards)... go check them out here on his Youth Roots Music site. He sent me a pic on my cell phone of him with David Crowder, but I can't manage to emil it to myself... my phone is not THAT high-tech... his on the other hand-- I'll see if he can email it to me and try to post it if he'll let me. :)

School has been tiring and dramatic... with kids and other "issues"... Did I mention I am so happy for the weekend? LOL

Thomas has his pinewood derby COUNCIL race tomorrow! He won't be racing, but competing in creative design-- it would be SOOOO awesome if he won-- I am hoping he has a good chance! :)

Anyway, think I am going to jump in the shower. It's been 80 degrees here for a few days and I'm feeling stinky-- LOL-- have a good weekend-- hope it's as long as the week was. :)

L

Thursday.. ahhhh...

Andrew is minutes from home, I got a neurologist appt. for next Wednesday and my fever, etc. is gone...

Whew!

L

what day is it?

What a loooooonnnnnggggg week! I waited and waited for results-- called and called to get someone to answer me. I was finally told that I have a Vitamin D deficiency and that my dr. will "discuss my other results with me at my follow-up appt. in May". K. so, apparently, a vitamin D deficiency is common in autoimmune diseases, lupus, MS, all the stuff I am worried about... so... I called my regular dr. to try and get a sooner appt. with a neurologist... called yesterday (he doesn't come in on Tuesdays). In the meantime, I got REALLY sick-- last night I had a temp. of 102 (which for me is more like 103). I called every sub on the list for school-- all booked. My director was going to try and shuffle people around, but when I got up this morning, my fever broke, so I went on in. What the heck is wrong with me? Really, that's all I want to know.

So, just a bit ago, I finally got a call back (after calling them this afternoon) to tell me the names of some neurologists... um, I just wanted the appt., and figured it would be faster if they could do it for me... the appt. maker said she could do it for me or I could do it... I asked if it would get me in quicker if she did it, and she said probably not, but I opted for the chance that it would and asked her to do it. I may regret that-- I don't know... I hope not.

At least Andrew will be home tomorrow-- YAY! This has been the longest week EVER!

L

Warning: I'm going to be ugly and you might not want to read this.

I put that up there because I am completely PO'ed at this point and I just can't take this crap anymore, I really can't.

I called the stupid Immunologist's office this morning to be kind and cancel the appointment that they tried to make me wait 8 weeks for. Since they were supposed to "see what they could do" and call me back with an earlier appointment, and I NEVER heard back from them, I assumed that meant that the appointment was still scheduled and I would be the bigger person and actually call to cancel it-- SURPRISE, they didn't have me down for an appointment AT ALL! I told them that I thought that was simply amazing since they never called me back, and the receptionist had the nerve to ask me if I needed to make an appointment since I apprently never had one-- UM-- NO THANK YOU-- that one would probably be for SEPTEMBER.

So, then, I was supposed to get my test results-- you know, the ones I was SUPPOSED to have last Thursday from the "very thorough dr. who was supposed to be finding all the answers for me". Yeah, I didn't hear from her all morning, so decided to call them at lunch. RESULTS NOT IN YET AGAIN!! SO... I very politely stated that I have some nerve / muscle related issues that I am growing more and more concerned about and that the appt. they made me to a neurologist was for JUNE, and I needed those results before I Could call to get that moved up-- AND repeated that I was growing very concerned about these symptoms that have gotten worse. She said she would check with the lab tech (WHO, BTW is IN the doctor's stinking office)... and I should call back this afternoon. K.

2:00, I have my planning. I call. The dr. HAS the results and has finished up with her morning patients and will be calling me back. K. Meanwhile, I am have started feeling like total crap. My throat is killing me, I feel like I have a fever, on TOP of all the nerve pains and muscle pain and twitches.

Yeah, 3:00-- car line for kids to go home.

I go home because I feel like CRAP.

I wonder why she STILL hasn't called, so I jump online to check the office hours-- this was at 4:06.

Um, they close at 4:00.

Did she call me? No.

I call and get the machine at their office. They will re-open Tuesday morning at 8:30.

What days does this dr. come into the office? Monday and Thursday.

I seriously cannot take it anymore.

K... now my hands hurt and I am SERIOUSLY tired of complaining.

L

Oh my gosh...

I just discovered that TARGET has been selling my book, LOL! Now, my publisher "is no more", so it was not placed there by them, but darn, that would have been awesome if that had been able to line that up when I actually got royalties! I'm pretty bumbed that I see no royalties from that since they've ended publication. I also found mention of my book in several recent newspaper articles... what is up with that happening now that it doesn't count? Makes me wonder... anybody out there interested in re-working it / republishing / re-releasing? I'd be more than happy-- got TONS of new ideas to refresh the thing now...

something to lighten the mood

I just stumbled on this...



This made me laugh... and then I found a ton of them on youtube-- do a search, LOL. It must be all the rage now-- I feel like an old married hag, LOL... (14 years next month--yikes!!!) We didn't get to dance at our wedding (reception at a Baptist college-- no dancing), but I SOOOO totally would have done this-- it would have been too funny!

Gettin' my "back" in gear to get something done today now...

L

results? nope...

Yeah, so I waited all day for a call from the dr. with results-- nope. After school, I called them-- nope, didn't come in... try back on Monday. I asked about getting an appointment sooner with the neurologist (or seeing a different one)... got the typical, "have you called them to ask about going sooner if there is a cancellation?". Um, no, I have no results to give to them to help me do that... so, looks like it's all Monday. Here we go again.

L

I kind of went AWOL

because I'm too stinkin' tired. I went to the dr. on Monday and somehow it is already Wednesday... I am exhausted. Andrew leaves on his trip on Saturday, and won't be back until Thursday, and I am already exhausted. Not good.

Had more tests at this new dr. She is really thorough, and listens and wants to get to an answer, which is all very good, but she made a referral for me to see a neurologist, and they called with that appointment today... June 3rd! What? I cannot keep doing this for that long... here we go again. I should be getting a call with my yet more test results tomorrow, so when they call, I am going to make it perfectly clear that I cannot wait that long. She will either have to send me to someone else or get me in quicker. I need relief. I would have told them all this when they called me with the appointment, but they called me on my cell phone right at the end of lunch-- I was in a hurry to write it down and get the kids, and then all I was thinking was how the date fit into my schedule with the end of the school year, Ichthus, etc. About 5 minutes later, it hit me... JUNE... this is APRIL, um, no.

So, now I am just a big crying baby again. I am so worn out with this. I am so tired of myself, I really am. Not to mention doctors. I just cannot understand how they could expect me to wait that long with the neurological stuff I have going on and the immune stuff-- just don't get it. I'm tired of wasting time and feeling like crap while I'm doing it. And I'm tired of complaining... I'll shut-up now...

L

tomorrow is the day

I am going to my appt. with the Integrative Medicine dr. in the morning. I have drawn up all of test papers and my full medical history... I know I sound nuts for doing that, but I have GOT to find an answer, and I have really big hopes with this dr. I think I have included everything that could possibly be related in that and I am just really trying to take charge of my health once and for all. I told Andrew that if they told me to eat noting but broccoli, I'd do it-- I am so tired of being in pain and being so tired.

So, anyway, if you think about me at around 8:30 (EST) tomorrow, please say a little prayer for me... which makes me think of this (everything makes me think of a song, LOL).



L

Funny

So, I posted a link to Dave Barnes, a good musician in my "Good Stuff" post the other day... one Andrew had brought to my attention, and we have since discovered that he is also a comedian... who knew? Andrew found this on youtube... a just "for fun" video (the "Andrew" in this is also a musician)... he has lots of other funny stuff on youtube if you dig around, but this one just made me laugh. :)



L

back into it, and ugh...

So, we've been back to school from spring break for three days now... and it feels like it. I need sleep, I h-urt and there has been more drama... add to that I can't sleep and I'm hormonal, and ugh. 5 days until my dr. appt. with the integrative med. dr.-- come on Monday. I have to be able to get somewhere with this dr.-- I can't take it anymore... I must have looked especially miserable this morning (I was) because during morning prayer before school, they laid hands on me and prayed. I need to feel better-- I am so ready for that.

I have lots of adorable pictures of my kids at school (for a graduation project we're working on), but I can't post them here-- pooh... I have some super cute kids-- wish I could! :) Doing some work on moving forward with the pics still, so hopefully, more to post on that soon.

Going to sit on the couch for a bit before cooking supper...

L

it's the end of our break

as we know it... tomorrow, we go back to life in the craziness... shoot! And, to top it off, it has been gorgeous today... makes it even harder... sigh.

I had a really well-rounded break with the kids-- didn't step foot in the school building all week... which was nice. We also slept late every day, which was nice, but makes the prospect of 6am look pretty awful, too. I didn't do too much of any one thing this week-- I cleaned enough, I got to see my family (extended, I mean), I got to work on photog stuff (which has only put me in the mood to do that all the time-- come on summer), I got to explore the world with the boys (including Andrew), I got to visit a church I have always wanted to visit, we got ice cream, went out to lunch, went to the library-- it has been *nice*.

So, I said I would post about our "family adventure day" yesterday... we went to the state capital city (very close-by home) and just walked around down-town. We ate at a local diner, took pictures, walked across the "singing bridge", listened to the world around us (have I mentioned that we also saw "August Rush" over the break? You HAVE to see it if you haven't!)... we found some cool chalk-graffiti and were able to add a little sidewalk art ourselves, just a very cool day... so, here are a few of the pics. I have a TON more, so I'll probably add in the coming days and will be putting some up on my photo blog, too.

*Someone had written "Join Hands" on the sidewalk with chalk-- the chalk was left behind, so Thomas and Tyler added some of their own art-- will add those pics later. Just couldn't resist the pose with the words.


*This is one of my all-time favs of Thomas-- just wish his eyes were open a little more-- he was standing outside an old building down-town.


*Can't decide which way I like this one... we were sitting in a booth in the diner and he was by the window... good lighting. :)It looks better bigger, too, so click on it.




These still need some tweaking, but I like them. :) Loads more still...









Back to life as usual for now,
L

andrew

let me take some pics of him yesterday on our family adventure day (will post more pics of that later-- got some awesome shots of the boys again), but wanted to go ahead and get these up of Andrew... he makes me smile. :)











L

cool dudes and portraits

added to my photo blog (click that to see them).

Added a bunch of portraits of Thomas from our outing, too... scroll down on my photo blog for those. :)




L

we had a blast yesterday

We knew the rain was coming, so the boys and I jumped in the car to return some movies, some library books, pay some bills, get dog food, you know, a mountain of errands... we were trying to beat the rain. Well, I am so consumed with my camera these days, that I thought I'd just take it and maybe if the rain held off long enough, we'd stop at this little historical park area and take a few pictures. It was sprinkling lightly, but we did make it in time... with umbrella in hand, we spent a long time at this little park and discovered a few little local treasures that we drive past every day, but don't pay attention to. So, this spurred us on to find more... we drove around town and every time we noticed something cool we hadn't noticed before, we jumped out of the car and took pictures, all the while dodging sprinkles with our tiny little umbrella. It was a blast! The boys loved the history they found and getting to see things closely that they usually just drive past... I totally think we should all do this from time to time. It was the best day!

And, here are a few shots I got (um, I took 150 pictures yesterday... yikes!)... more will be on my photo blog-- as soon as I get all the editing done. :)

ETA: Apparently, embedding from the new Adobe makes the pics "un-clickable"... I will put pics up on my photo blog that are (so they will enlarge).




(They were putting on their "cool" faces-- LOL).








(Trying to look "cool" again... this reminds me of the old farm couple with the pitchfork, LOL.)

good stuff

This is good.

He is good (Thanks, Andrew!)

These are good (and made with Spelda)... they have gone down in size though, which is NOT good-- wah!

Been doing this while eating lunch... gotta go, will find more good stuff later, just a bit to post for now. :)

L

I know it's hard to believe...

but I actually like this song, LOL. Something I said today reminded me of it-- I know it's not my typical music, but I like it and I haven't posted much music lately, so here you go. :)



L