Breaking through the Fibrofog…

Ok I told you it’s not MS right? i dont remember and I’m too lazy to go back and see what I wrote.  I saw my regular dr today, the good, ok best part was that I havent gained any weight, or lost any. I’m maintaining the same weight which isnt great but I”m not gaining!  My bp was super.   She agrees that what the MRI showed is most likely from migraine activity.  When I mentioned not wanting to shell out the highest copay for the migraine meds, which actually work which made me not want to complain but medical costs are getting out of hand, well she agreed to give me something else.  So I will start that and see how I do.  She thinks it might help some of my other symptoms but if it doesnt we’ll have to figure out something else.  She doesnt agree w/ the neurologists game plan, you know the wait and hope you get better on your own approach.  She wants me to call her after my appt with him next week and if he is still not being active in seeking treatment/diagnosis for me then she is going to give me a referral for a second opinion.   I’m guessing after how our conversation went with him yesterday that I’ll be finding a new neurologist.    I like him really I do but I need someone who is willing to help me not let me suffer.  He isnt looking at all of the symptoms together as my regular dr is, and I think that’s why she is more concerned.  he just wants to treat each separately, he wants her to deal with the stuff he doesnt want to but he’s not even willing to do anything for the neurological stuff right now.

I’m feeling ok these days, I’m not letting this illness get the best of me anymore. if the drs dont know what it is and cant do anything to help then I’m just going to make myself act like things are normal.  I’m going to do my best to keep up with my old routine and push myself if I have to because as of now as far as the drs are concerned it’s not a big deal so I’m done letting it get the best of me.   I might feel like crap but I will keep going.   The busier I am the better is my motto.   Speaking of busy, I took both the little ones to walmart and sams club this morning, barely had time to get some lunch for myself after feeding the kids then going to get Caleb.  then I put Bo down for nap then headed to my drs appt then back in time to visit with my friend until Dean got home when I made dinner.  then we headed out to run some errands and got back after the boys should have been in bed.  now I’m wiped out, again, but I started my day this way so I guess it doesnt matter if I am sitting around being tired and miserable or out and about tired and miserable.  I’m choosing to keep going and hope one day like the dr said, the symptoms will just vanish, it’d be a miracle and I believe in miracles so maybe one day he’ll be right.   until then I’m going to bed….;-)

Around 11:55 a.m. today there was a knock at the door.  I was changing Bo’s diaper to get him ready for his nap.   It was the neighbor, she wanted to make sure I knew that schools were closing early.  I asked her when, she said at noon!  I quickly got the kids together and went to get Caleb.   I put Bo down for nap when we got home as well as got Zeke settled in to a nap as well.  then Caleb and I headed out in the 90 degree weather!  I cut the grass then set up the sprinkler for him to play in.   When Bo woke up I got him dressed in a swim diaper and was going to see if he liked the water.  He HATEd being barefoot and screamed until I held him.  I tried to sit him in some water on the slip and slide and he continue to scream.  I hope he adjusts to it or it’s gonna be hard keeping him busy and cool all summer.   I am guessing I’ll have to invest in some swim shoes for him in order for him to play outside in the water.  He has a huge issues w/ his senses, textile dysfunction is what it’s called I believe.  all I know is that it’s annoying!  

we’re all chilling inside now, the baby hates the heat and fusses tons if I try to keep him out in it.  he’s been fussy in general for a day or two which is not normal for him so who knows what’s up with him.  i have a drs appt tomorrow and Zeke goes for his check up on Thursday.  other than that a laid back kind of week.   thank good ness!  less than 2 weeks of school left, I cant believe it!

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?!?