waiting

feeling confused

Have you seen those commercials-- I think it is actually for car insurance quotes-- where the people are in a big red dot on the floor-- they describe some what-seems-to-be-hopeless situation and say "I am so there"? Let me check real quick and see if I can find one...

Ah, yes... here we go... this one is perfect.



So, this is where I am with, it seems, everything right now. Right on the red dot. I don't know if I am exactly fighting this fibro diagnosis, or just questioning it or what, but all I know is that this medication I am taking me is knocking me out, messing with my memory, making me dizzy (in the strongest sense of the word), and still doesn't seem to be working... so, I am doubting it and even the diagnosis. I went online and asked advice and opinions-- and everyone seems to be screaming, "YES! You have FMS!", but all I know is that I want to stop twitching-- I have to stop twitching, and this stuff so far ain't doing it... and I'm still tired (even MORE so), muscles are tired and hurting, the whole thing... I am trying to hold out-- to give it time, but the side effects don't seem to be getting any better yet. And, then I find myself wondering, can I function this way when schools goes back?? Esepcially if I end up with a whole lot more kids in my class, a longer day, Tyler in school (with possible homework added to Thomas') and Andrew's job changing?? Everything I read about fibro. says you need to simplify your life and adjust your life TO finbromyalgia... exactly how am I supposed to do that?

I have been looking for a yoga class-- can't find one that I can make it to, so we visited the local county fitness center yesterday. They have an awesome indoor pool, a walking track, weight and fitness rooms and offer classes-- no beginner yoga right now though as I can find. I'm not paid again until the end of August, so joining as a family is out for now, but I'm thinking about taking the kids once a week for summer as a "drop in"-- or maybe going as a family on the weekends. But I can't do even the cycle or walking track if the kids are with me, so that leaves the pool... is that enough? (I can't swim, so it would be walking in the pool essentially.)

I'm sorry, I know I said I wanted to get back to posting something other than "health-related" posts, but as you can see, I am totally on this red dot and feel like I can't get my questions answered. (I will try to post some pics from the county fair next time if I can figure out how to get them from Andrew's phone-- we went yesterday-- it was way exhausting, but the kids had so, so much fun). I think I am going to try and make an appointment with my GP as a "follow-up" sort of thing to the rheumatologist appointment and my diagnosis. I have put that off a bit I think mostly because of his previous involvement with the school where I teach and not wanting to give off any preconceived notions at school, but I'm going to just have to bite the bullet and do it. I can't stay on this red dot forever, and I feel like I have been there already for years with NO answers. Now, I have some and I'm just confused by them.

L

a true example of the Father

and we finally have an answer

Fibromyalgia.

That does not positively rule out other additional things, BUT it does look like a good possibility at this point that all of my symptoms have been because of the fibromyalgia. To be perfectly honest, there is still a part of me that is scared to believe it because the diagnosis just came so easily at this appointment-- and after waiting YEARS for someone to tell me what is going on, it just seemed so easy for this rheumatologist. But, he was the only one to actually DO the proper examinations... I'm still pretty angry about wasting all this time and money on being passed from dr. to dr.

Anyway... to back up a bit... the neuro. referred me to this rheumatologist-- for a 2nd opinion-- in contrast to the rheumatologist I saw from LAST June. My appt. was Tuesday morning. I honestly had my doubts going in-- I guess because of the experience I had from my last trip to the rheumatologist. The last one was at a very prominent hospital affiliation (not that this one this week was not-- but the first was at the University hospital), and totally should have been the one to help me, but she was the one who passed me off to the immunologist-- who happened to be her husband. What is super ironic in all of that is that the head dr. in that office is one of the leading rheumatologists in fibromyalgia-- and SHE was actually the dr. that I was supposed to see, but not the one they gave me. I know there is a reason in all of that, but standing on the other side of the matter, I am pretty angry about all of that. Anyway... THIS rheumatologist (that I saw Tues. morning), actually listened to everything I have had going on and then did a thorough examination. I didn't know what he was doing at the time, but when he came back to explain (after I changed out of my gown), I understood that he had done the pressure points test. No one has ever done that with me-- it kills me. The last rheumatologist looked at my wrists, ankles and knees; checked my reflexes, did bloodwork and sent me on my way. If you go to that link up there, (pressure points), you will see there are 18-- to be diagnosed with fibromyalgia, you have to have 11 of the 18-- I had all 18.

I also have a low T3 thyroid count; a vitamin D deficiency; neuroma; Raynaud's; an immune deficiency and tarsal tunnel-- along with the twitching, vision issues and nerve pains... and the recurrent yeast infections and bowel issues-- apparently, all of that is caused from having fibromyalgia. Now... what are we doing about it? The medication part, I am not overly thrilled about.

The rheumatologist wants me to stay with the tripled dose of neurontin (which kicks my butt-- makes me feel drunk). He wants me to continue taking it and then if after a while I still don't see a difference (it is making NO difference at this point with my twitches or joint and muscle pain / fatigue), then I can see my GP and he will change me to Lyrica. I really didn't want to stay on the neurontin, but apparently, Lyrica has the same side effects (PLUS weight gain--yikes), so I am going to try. I am also going to take the thyroid boosting stuff that the integrative dr. gave me and then continue on the vitamin D. The dr. also suggested that I start a light exercise program, such as pilates, yoga, cycling, etc. I looked into yoga and can't find anything offered at the time I could make it in my area-- still looking and went to the library last night and picked up some books while the kids were at VBS-- just to give it a try. The dr. also said that the first thing I should do is educate myself on fibromyalgia, but not to read everything I find on the internet-- he said there is a lot of garbage out there. So, I went to the sites he suggested and also checked out some books on fibromyalgia at the library last night.

I don't want to go overboard, or I know I will be flat on my butt, but I also know that I need to get all these things going while it is summer and I have time. I also know that I can't stand this twitching anymore, so I'm giving it all a try-- in moderation. I just don't want to waste anymore time-- it's been years and just having a direction to go to combat this is a HUGE thing for me. I sooooooo want to feel 35!

So-- all this long post to explain all that, and to say that all of us should take charge of our health. Don't give up if you're being passed from dr. to dr. because all they do is try to treat the symptoms rather than the root cause... eventually, there might be someone who is willing to connect the dots and I have hope now that this has happened for me.

And, maybe now, I can post about things non-health related. :)

Lynn

um, OW!

Yeah, I mean OWWWWWWWWWWW! That was not fun! I had my EMG this morning. I seriously almost passed out. The initial part of the EMG was okay-- the "nerve" part. Basically, they send shock signals through these little tape pads into different parts of your body and your nerves react. It is totally non-invasive-- just stings and makes you jump. The worst part of that was the back of the knees and then my ankle / foot with the neuroma.

The 2nd part of the EMG was one of the most painful things ever-- especially the calf muscle and my back around my spine. OH. MY. GOSH. The neuro jabs you in various places with a needle, which then sends electric impulses into the muscle. Granted, the needle is not quite the size of a shot needle, but it is definitely NOT the size of the pins you see used for acupuncture either. The really awful part is the wiggling of the needle in your muscle when the dr. can't get the reaction he is looking for. I closed my eyes when the dr. told me that all I needed to do for this 2nd part was try to relax-- LOL. As you can imagine, you bleed in all these spots you're being jabbed in, so the dr. hands you a paper towel to take care of that in the midst of jabbing you. Somehow (honestly, I was praying the whole time), I got through the whole thing-- all the way to the end where he was jabbing me in the spine and neck. He then started talking to me about the results and my follow-up next week with the rheumatologist, and I started thinking, "huh, I think I might throw up... nah, it'll pass... um, no... it's not going to". I wasn't quite sure if I was going to throw up or pass out. I think I blurted out something like, "I think I'm going to throw up", which was eerily reminiscent of the afterglow of giving birth to Thomas. The pain in my lower back, coupled with what seemed to be my ovaries was also very familiar. I think the neuro. asked me if I wanted to lie down and I think I must have said yes, because I remember him saying, "Then, do" and I fell back on the table... Andrew was there with me thankfully. I'm not sure how gracefully I did so in my hospital gown-- that thought just occurred to me, LOL. All I know is that I was burning up and wasn't sure I was going to stay conscious for a bit there.

When I finally pulled it together, I wasn't sure if I was supposed to get dressed or what, so we waited a while before we gave up and Andrew asked the nurse in the hallway what we were supposed to do... I was having back spasms and I still feel like I've been beat up-- and it's all still kind of foggy to me, so I'm not sure I understand still. What I think I remember is that my EMG didn't show any abnormalities in nerve / muscle conduction, but because of my continued twitches even though I am on neurontin, I am now going to be on three times the amount. If I understand and remember correctly, the twitches could either be benign fasciculation syndrome, or somehow connected to the low thyroid levels the integrative dr. identified. I think he mentioned something about a possible autoimmune thyroid something. So I am supposed to have this appointment with the rheumatologist on the 24th and then possibly an endocrinologist after that. That just REALLY, REALLY frustrates me because I just want a blasted answer already... and as I said to Andrew earlier (paraphrased), I have to deal with lots of physical imperfections as I am getting older, I don't think I should have to just "live" with never-ending twitching all over my body at the age of 35-- I just shouldn't.

Off for now... my back can't take this chair anymore-- I wanted to write about the poor old man and woman in the waiting room, but that will wait until later. Let me just say, if you have elderly people in your family, please help them when they need you, and say a prayer for them when you can't physically be there to help them. This couple just broke my heart today. I'll be saying a prayer for them.

Lynn

I'm getting 'lectrocuted in the morning...

bzzz, bzzz the electrodes are going to buzz...

Sorry-- just trying to have a sense of humor with my take on the Getting Married song from My Fair Lady. I have my EMG tomorrow morning at 9. I've been nervous about it all day. Half of me has worried that the twitches will hide at the worse time possible, the other half of me is just worried about it hurting. I have stayed fairly quiet about it on here because I feel like I just drone on and on about it, but I REALLY hope and pray that this gets me SOMEWHERE. I even video-taped my toe twitching in case we need it, LOL... I just want them to identify it and so I need it to be obvious WHILE I am having the EMG. I even worked myself to death on my feet all day just to hopefully provide some extra twitching tomorrow... I know that sounds messed up-- I just need this, I mean NEED this to give some definition to what's been going on with me. So, if you happen to read this, please say a little prayer for me tomorrow at 9 am. I would really appreciate it. :)

Many blessings to you,
Lynn

did I mention...

that I am going to see the Counting Crows & Maroon 5 on August 30th? I thought not. I am. :) The Counting Crows are kind of the honorary band of our marriage-- every time i hear anything from August and Everything After, it reminds me of our first apartment... there was barely enough room for a couch, LOL. It actually had 2 distinct rooms-- living room / kitchen and bedroom/ bathroom. It was newly built and right off campus, which was good since it was walking distance to our classes and to the restaurant where Andrew worked. Life was so, so, so simple. We were young, we had friends (LOL), we didn't have much money, but it was okay because our apartment with ALL utilities included was only $350 / month (I think that even included Cable-- ha!). In our bedroom closet, we had a hook-up for a washer and dryer. We bought an old used dryer and would go to the laundry mat down the street, wash our clothes, and bring them home to dry them. Those were the days.

We celebrated our 14th anniversary this year-- blows my mind. We are so old, LOL. What stinks is that I FEEL older than I actually AM... hoping to change that... but I digress. Andrew told me yesterday that he told someone else that he is still crazy in love with me. I am so blessed to be with the love of my life. Life is not the same as back then in that little apartment off campus-- the world is not new and shiny; decisions are not easy; things are NOT simple anymore, but oh, how I love him still. In this world where I am not sure of a lot of things, that I am very sure of, and how grateful I am for that fact.

So, in honor of those thoughts and the Counting Crows... which I know I have done before... but hey, it's my blog... I found this of one of my favorite CC songs (not the best video, sorry). And, low and behold, it was from VH1 Storytellers, so it explains why the song was written-- always wondered. Adam Duritz is such a poet with his lyrics... "Every time she sneezes, I believe it's love"... ah, the lyrics.



Oh, and I think there's some Maroon 5 down there in my sidebar, too, in case you're interested. :)

Lynn

two different lives

Since it's summer, I have been feeling like a different person-- I guess just the liberation of cleaning has me giddy. I've even cooked once or twice. Today has been a little different. While I did balance the check book (and will be getting to bills shortly) and have been working on laundry, I also have had to deal with some work stuff. That other me has been present today-- and not for enjoyable reasons-- so I haven't liked it very much unfortunately. Today has just brought back to me how torn I always feel with the two different people that I have to be... and how unfair it feels to the boys. I hope this summer goes slowly in many ways-- and yet, I also have no pay days until the end of August, so, you know, there I am torn again.

Thursday is the day I go for my EMG-- I am nervous. The more I read about it, the more nervous I get, too... gotta stop reading. Meanwhile, twitching is an understatement... it's in my feet all the way up to my face... my lips today. Not sure being nervous about it is helpful-- how can I win?

Anyway, my house-cleaning self calls. Hopefully, I'll have some pics to share again soon... may camera has been calling to me. :)

L

getting to know you

Someone sent me this, so thought I'd just respond here-- will send on, too, but if you feel like answering in a comment here, feel free. :) Catch is, you can answer using only one word...

1. Where is your cell phone? pocket
2. Where is your significant other? Ichthus
3. Your hair? messy
4. Your mother? love
5. Your father? tireless
6. Your favorite thing? simplicity
7. Your dream last night? forgot
8. Your dream/goal? freedom
9. The room you're in? front
10. Your hobby? photography
11. Your fear? several
12. Where do you want to be in 6 years? healthy
13. Where were you last night? pizza
14. What you're not? type-b
15. One of your wish list items? car
16. Where you grew up? KY
17. The last thing you did? ate
18. What are you wearing? PJs
19. Your TV? on
20. Your pet? four
21. Your computer? laptop
22. Your mood? wondering
23. Missing someone? Andrew
24. Your car? minivan
25. Something you're not wearing? watch
26. Favorite store? craft
27. Your summer? clean
28. Love someone? LOTS
29. Your favorite color? red
30. When is the last time you laughed? yesterday
31. Last time you cried? today
32. Who will resend this? ?
33. How many sisters? 0
34. How many brothers? 1
35. How many children? 2

just sitting here...

reading about Tim Russert-- what a sad day... he was such a good man. Forget about his TV personality. He was a good man. A good son. A good dad. Just so very sad for his family. Just sad.

It's been raining / storming since this afternoon, which has messed up Ichthus this year. They ended up canceling the evening's concerts. I know Andrew is bummed. Thomas and I are supposed to go tomorrow-- if it's not too much of a mud-pit and/or too wet.

I have gotten a lot done these past two days-- pantry totally cleaned-- kitchen totally cleaned-- stuff pulled off counter tops even. I re-discovered that I have an island in my kitchen, LOL. Started Thomas' room, but then left to find some organizational things, got side-tracked by supper and didn't get finished. Living room is a mess still and I can hopefully get that done tomorrow morning. I'd like to get it cleaned up before Father's Day-- not much time with the trip to the festival though. Still gotta pick up Father's Day gifts tomorrow, too.

Found something cool... I know I haven't posted many "visuals" here in a while, so thought I'd share this cool little tool...

Places I've been (not including ones I have flown over, LOL)

Make yours @ BigHugeLabs.com

Looks like I need to travel west young man, huh?

Well, I'm going to take my twitchy self to bed. It's been a little better this week, but seems to be back today-- since I've been busiest today I guess. EMG is now 6 days away... a little nervous about it... scared that it will show something, but also scared it won't... I need to figure out what prompts it before I go and do it. If you're a mom, you know what it's like to take your sick child to the dr. and they are suddenly just fine, until you get home and their fever shoots right back up... that's sort of where my fear lies with myself. Yadda, yadda.

Anyway, hope all have a nice weekend and Padre's Day!

Night,
L

cleaning, burning and face-booking

I have begun cleaning at long last. I started with the pantry yesterday, went and got groceries today to re-fill the pantry, and am in the midst of dishes now (well the dishwasher is anyway). The boys and I are burned to a crisp! I put sunscreen on Thomas and Tyler, but somehow, Tyler's back is just awful... poor baby. He cried to go to bed last night 9you have to know him to understand why that is a big deal), and got in bed with me at around 4:45 this morning. We picked up some aloe gel at the store, but you know, that stuff just wears off too fast. My feet and knees are pretty bad... feels like they are going to crack when I bend. I didn't put sunscreen on myself (idiot) because I am still trying to get as much vitamin D as I can. Yep, we're staying in today.

I finally added stuff to my facebook page. I set it up months ago so I could read Andrew's for work. It's amazing how many people are there and how many have already seemed to fall out of the sky since yesterday. It makes you think about how many people we meet throughout our lives, how many of them know each other and how much we change over time... I feel like I've been about five different people since highschool. It's strange... and addicting to find people... and it's keeping me from housework-- even now, LOL.

So, I'll jump off now.

Happy summer,
L

learning to relax

I made some temporary decisions yesterday, asked a couple of needed questions, got a couple of (temporary) answers and decided today to REALLY start vacation. That also means cleaning the house though, which I have managed to put off all day, LOL. Andrew left for Ichthus this morning, and then the boys and I spent the rest of the day outside-- they in the pool, me getting sunburned. My feet included. Then, after we walked down the lane to the mailbox (to find no mail after Thomas crash landed his bike-- he's okay), we came in and ate some popcorn. I am seriously going to go clean though. I can't take it anymore-- and I definitely can't really relax until it's done. I crave organization here... my classroom has been organized all year, now it's time for home.

I am hoping to update here a little more often during this break... and eventually, maybe I can post more about the quandary I have been in lately. For now-- I'm off to the kitchen-- gotta start somewhere.

L

today...

was the day I FINALLY got done with my classroom pack up. Whew! Summer has officially begun for me at last. On the flip side of that, decisions and diagnostic stuff is here now for me. It seems that with a couple of things I was looking into, I have "just missed" the mark. I know I am sounding cryptic, and don't mean to, but I can't exactly spell it out here... anyway, some of you know what I am referring to... and, I am trying to see what I think of as my own "bad timing" in reality as God's will. I am open to His direction and am praying with faith for it to be revealed to me... Still, you can't help but kick yourself when your timing just stinks, you know...

So, I ask for your prayers for guidance and discernment, even if you're not sure what I'm talking about, LOL.


Blessings,
Lynn

I'm a stressed-out moron...

I haven't blogged for a while... end of school stress, packing things up for summer and other stressful events. I left school after cleaning yesterday in such a tizzy with Tyler that I went off and left my sizzix machines and die-cuts in a large basket on the bench inside by the office doors... and didn't realize until I got home. UGH. And, of course no one would answer the phone this morning (summer program is there), so I went ahead and got ready to go earlier, BUT Andrew just called (he is picking up some sound equipment from the church the school is in), and said he would get it and put it outside my (locked) classroom door... I hope he finds it. You know a person is frazzled when they do something so stupid... sigh... I just want to get everything at school done today and then I can slow down a bit. A lot of stressful things have accompanied the end of this school year... things I really can't talk about here, but I really need a mental break.

Then, I get electrocuted on the 19th (the nerve conduction thing) after Andrew is home from Ichthus. He goes to set up Saturday, then leaves for the festival on Wednesday and back on Father's Day. Then, the electrocution. He's got major stuff going on right now, too... and it's just a really stressful time right now, which is only compounding my problems with being "Twitchy Woman"...

Anyway... yes, I am still around, I am a moron and ready for a break-- that pretty much sums it all up for now. Hope everyone out there is good.

L