Wisdom from my walk

I talked to my neurologist this morning. He said the MRI was about the same as the one last year. there was a slight area in the white matter but he said it is something that shows up commonly in people who have migraines so he thinks that is all it is from, but it wasnt there last year on the MRI. He is taking the wait and see approach, as he did last year when he didnt know what was wrong with me. He admits to not knowing what is causing me to feel bad. I see my regular doctor tomorrow and hope she has more advice to offer other than to suffer and wait it out. He said he does not think it’s MS, so that’s good. but the bad is not knowing what is causes me to feel so bad. I’ve been through this before and it’s even more frustrating now that it’s been a year and it’s the same load of crap from the doctors, and I feel worse now than I did then. reading back though to this time last year I may have been just as fatigued as I am now I just dont remember it. the other big problems that are worse now are really bad dizziness and of course tingling all over, used to just be my face but now it’s everywhere. my legs and arms are weak, I keep getting bad muscle spasms, they are like the bad leg cramps you get when pregnant and wake up screaming, ok that’s how I was when pregnant at least, but now it’s in my back and arms and sometimes thighs. my body is so out of whack it’s driving me nuts! and the drs arent helping either…we’ll see what my favorite dr says tomorrow, hoping she’s still on her “i’m willing to find out what it is no matter what” kick….

I’m tired…oh so tired.   Friday we did the zoo field trip, that really wore me out!  Yesterday we didnt do much, visited my dad’s family for a bit before coming home to hang out with my mom while Dean went to work a side job for a few hours.  If my mom hadnt come over I dont know how I would have made it through the rest of the afternoon.  I wasnt feeling so good at all and dont know how I would have managed without her here.   I fell asleep for a bit when Dean got home then got up to watch some tv with him before we both crashed.   This morning I had to be at church for the first service, so had to be there by 9.  Zeke woke me up around 6:30 so I stayed up, bathed and dressed him then got Caleb dressed once he was up and got myself ready to go before waking up Dean and Getting Bo up and ready.   by the time I helped out in nursery, sat through the church service after that, and got home I was done.  I started to help Dean get lunch ready but told him I just couldnt pretend anymore and went to lay on the sofa, I was out almost immediately after closing my eyes!   when I woke up lunch was over, bo was down for nap and Dean and caleb were hanging out.  I made myself lunch and fed Zeke then fell back to sleep.   I am just too tired to function sometimes.  it really sucks.  it’s a beautiful day outside and I can barely make myself get up and force myself to eat something.  I’m not depressed really, just frustrated that I cant live life how I used to.   I want to be able to continue to be superwoman, that’s what Dean used to say when I’d have the house cleaned, the laundry done, and the kids contented when he’d get home.  these days I am lucky to get one of those things done or if I do I am usually doing it while in pain or forcing my eyes to stay open during extreme fatigue.

a week or so ago I forced myself to scrub the kitchen floor because it needed done and I knew Dean wouldnt do it but it was after a day of extreme pain and feeling crappy.  afterward Dean said he just didnt understand why I’d allow myself to suffer just for a clean floor.  to me it’s easier to be doing and being miserable then just laying around wallowing in my pain and misery.   today though I’m too tired to “do” anything.   yesterday I heard him telling his dad I was doing fine, he said this because I had been up doing chores and tending to the kids all morning.  I laughed and said no you are wrong, I feel horrible.   Dean cant see how I feel most times becuase I dont let him, because I try so hard to keep up that I can keep doing things because I want so hard for it be true.  but he also cant tell how I”m really doing because he cant feel how I feel.  unless I say to him, I hurt, or I’m having trouble moving things or walking because my legs or arms are weak  then he just doesnt know.  I dont tell him becuase I dont want to constantly complain, because I save my complaints for here, where I dont expect a reply, where it doesnt matter.    I dont want my kids to know how weak I really am these days, but I also know that when I tell caleb I cant go to the park today becuase I am sick and he looks at me and I look fine that he will never understand either.   I’m just rambling now, I think I’m going to force myself to try to get something done today….I’m hoping after all this rest I’m able to enjoy some time at the park with the family this evening….I hope at least…

ugh…so this morning I ran to the radiology place picked up my films, ran to the grocery store, went home collected the family, went to drop off the mri films to the dr then to go to the zoo.   we got home from the zoo at 4, on the way home I called the messages at home to see if the dr had called, and he hadnt.   in the 15 minutes from that time to getting home he did call, but his office closes at 4 on fridays.  He said he got a chance to review my mri films and that its not an emergency and nothing worrisome but to call him on Tuesday, cause of course Monday is a holiday.  So now I have to wait all that time to find something out.  so I guess I wont know anything til then…the whole point of running around to get him the films was so he’d let me know something today.    I am so frustrated that we didnt get home sooner, or that I didnt call our messages after he had called so maybe I could have called him on the way home to find out what he found.   patience is NOT one of my strengths….

come on, should this really be news?  geez…they were cheating and she gets the rap for being the bad one because she hurt them, she was probably a lot more hurt by their act than they by her.

this post was a year ago from the day I just got my MRI done last week, I cant believe it really.  we were sitting dealing with this same illness/es and fighting the unknown. Since then we’ve been blessed with a beautiful baby boy. this time though I feel more physically drained than I did this time last year. Maybe it’s the newborn, toddler, preschooler, load of crap to do and then add being sick, oh yeah and I did have a major surgery 2 months ago. It’s not reason I feel so bad if you put in perspective but new moms shouldnt feel like this. no one should, ever….

so…I’ve been waiting for my primary dr to call me back to discuss my mri results that Dean faxed to her today, but instead my neurologist actually called.  I assumed he wasnt going to since I knew he should have had the results already.   So…he thought I was going to the same place I went last year to get the MRI in which case they would have compared the MRI results for him but since I went to two different places he will need to get both sets of films, from the one taken now and the one taken last May.   Reason being this new report notes changes in my gray matter and this means there have either been changes in the last year, not good, or that the radiologist last year didnt make note of the areas on the report but that they were there on the films.   So… after I take him the films he said he and a radiologist at Mercy will go over both set of films to decide if there are changes in the two sets of films or if the reports just werent complete last time.   I dont really know which I want, changes means something is wrong and we’ll be closer to a diagnosis but it wont be a good diagnosis.   if the films show the same thing we’re back to the beginning.   I justdont know what to think.  If Bo wasnt napping I’d go pick up the other films right now as they are ready for me to pick up….but I guess I’ll go tomorrow morning before our zoo field trip then drop them off to him tomorrow sometime and hope he has time to review them but if not we wont know more til later next week.  more waiting….at least it seems like he’s interested in looking more into it which is hopeful as far as in the past its seemed like he wasnt willing to do much to help.   so keep praying…answers are closer than they have been in the past so that’s good news even if theres no real news yet.   have I mentioned how much I hate waiting?!?

In a few months my eldest will be in kindergarten.   He’s very prepared for this and constantly impresses the crap out of Dean and I with his intelligence.  One day last week he was working hard at the kitchen table on this picture.  it’s a picture of a person and he labeled the body parts.  he never asked how to spell the body parts, he sounded them out as he has been taught to in school.  so he spelled “foot” – fut.   My favorite part of the picture is “belly button” – blebtin which directly above he also wrote “belly” spelled bley.   for “leg” he spelled laeg.   and of course “head” is spelled hed.   So he may not know how to spell but he’s doing his best and for just under 5 years I think that’s pretty good.   I’ll admit I’m one proud mom, I’m sure by the beginning of school in the fall he’ll be even smarter than he is today.   Tomorrow we are all going to the zoo for his school field trip, Dean took off and we’re taking all 3 kids.   I’m looking forward to it and hoping the rain holds off.

yesterday Bo turned 18 months old.   That’s just 6 months away from turning 2!!  Soon my he wont be a baby anymore, he’ll be a real toddler.  he’s been walking and attempting to talk(he’s not big on real words, guess he figures if caleb cant spell and gets away with it what’s the point of using real words) for months, before he turned one even.   I guess with each passing day I feel like I’m losing my kids.   Before I know it they’ll all be off at school all day, then where will that leave me?  (hopefully not still going to endless drs appts!)  Bo is a smart cookie too!  He may be a boy of few “words” but he’s very vocal and such a happy kid.   He spends his days wandering around looking for new things to do.  He LOVES cars, he’s getting into an artsy phase, that or he just loves getting to be able to use markers and crayons.   I got some more color wonder ones for him, I felt bad not letting him use markers when he had to sit and Caleb use them and he’s content with using those, to him they are the same.  I also got them window markers, they arent as safe as far as making a mess but considering bo loves to hang out at the window eyeing up the outside all day he can combine the two things he likes to do!   that and it’s fun to watch the boys draw on the windows.   Bo loves cars and anything that goes.  he gets excited driving down the road and watching the cars and trucks go by.  he likes music just as much as Caleb does, he’ll often dance to music from whatevers playing on tv shows.   During the day we listen to xm christian music on the tv and he likes that too, he’s currently standing staring at the black screen listening to the music, I think he might be watching his reflection in the tv.

It’s so hard to believe 18 months ago I was having my second son.   Even more unbelievable is that 2 months ago I was having my 3rd son! It’s really no wonder I’m so tired!  This morning I awoke in so much pain( and throughout the night as well) but I picked up my wide awake infant and his smile just melted my heart.  I truly believe he’s my little reminder baby, he constantly reminds me that God does grant us our hearts desire.   just a few months after having Bo I was talking about when we’d have our next but my health was a mess then(or still) so we didnt think we could anytime soon.  I stopped nursing and got pregnant right away, something we never expected, for once my body worked the right way.   I honestly believe had I not got pregnant then that I wouldnt have ever had a 3rd son, something I wanted so much, to have more kids.   This morning as I looked at my precious Ezekiel I yearned for the chance to do it all over again.  I know that half the reason I am so sick now is because my body goes haywire after pregnancy, something that’s been proven time and again for me.   I look him and know that I might not feel this way(sick that is) if I hadnt had him, but I cant imagine life without him.   he is still so young and spends most of his day just hanging out with us, but those smiles and laughs he gives me are just what I need to bring some much needed joy to my days.

All my boys are constant reminders of God’s ability to do amazing things in my life.    Lets not forget the big boy in my life.  the man who stands beside me through it all.   My hubby is awesome, last night I was in so much pain I couldnt stand to be touched and I know all he wanted to do was comfort me but I couldnt tolerate his touch even.   He works so hard for me and the kids and tries to be understanding of how I feel.   It’s also hard for me to believe that it’s been nearly 10 years since we started seriously dating.  10 years, 3 kids, 2 cars, a house, a steady job, a great church community, friends and family…..the american dream….guess things could be worse than being sick huh? sorry I have to keep reminding myself of all the good things in my life…but it helps keep my attitude about being sick in check….thanks for putting up with me!

Finally….

thryoid bloodwork:normal(yet I still have an enlarged thyroid)

ANA: positive but doesnt mean much by itself(could just be supportive evidence of Hashimotos which we already know I have)
lyme titer: negative – that’s good!

rheumatoid factor:  negativeI(also good)

there was another lab results I that I cant recall that was abnormal but by itself means nothing.   so….usually to diagnose certain conditions you have to have a positive ANA and positive rheumatoid factor or other abnormal results.  She said my results arent conclusive, which just means we havent gotten very far.   But…my heart is fine!!  The test showed I have a low ejection fraction rate but she said that might just mean I’m out of shape.  nothing to really “stress” about!
I have the MRI report sitting here but my neurologist hasnt called me, guessing he’s waiting til my appt, which isnt for 2 weeks!!  so I told my reg. dr I had the results since they wont fax them to her since she didnt order the test, so I’m faxing her a copy of the report tomorrow and she’s going to call me after she reads it.   I’m guessing they’ll order another test or two based on what I read from the report and googled about it!   not to mention the report clearly states if pateints symptoms persist, to do another mri w/ contrast since part of the MRI was w/out contrast, which is frustrating as they did an MRA that day w/ and w/out contrast so we could have saved time and money just doing the MRI that way too.   as well as the other report(they did 4 tests) said something about needing to do another test for something else but I’ll wait to see what she says about it.  so nothing major yet, I’m guessing I’ll know a lot more after talking to her tomorrow about the MRI report.   All I know is that so far I’m not too upset about any of it.   Kind of frustrated but we knew that no matter what the results showed it wasnt going to be easy and that the chance of things not being clear yet were still pretty high.   she once again reminded me that she is going to do her best to get to the bottom of this and help me get answers.