Breaking through the Fibrofog…

Well we are home again. We’d been in Ohio for a full week, which was very restful for us. But we were ready to be home. Caleb was very ready to be home. He was the happiest little boy when he got home and ran around and when he laid down to go to bed you could just see his relief to be in his bed not the pack and play again. About half way home today he kept asking for grandmom and granddad and kept doing so and even once home asked for them, and I suspect he will for a few days, but he really did miss the comforts of home, as did we. We’ve slid very easily back into our routine, laundry is already being done, we’ve twiddled away at the puter for a while and now Dean’s ignoring me for some game , same old same old. It’s nice. nice to be home. Be nicer if we hadnt turned the heat off for a week though!!

It was a very quiet week, mostly. thanksgiving was spent w/ 20 of our closest friends and family there, but it was great. I particularly enjoyed getting to play cards a lot while we were there. Our neices helped watch Caleb some so we could enjoy the other adults, so he had fun and so did we! The worst part about being sick was not enjoying the great food that was made. Everytime I’d try to eat something yummy it would either taste horrible( my taste buds are all wacky from the medicines) or it would make me sick. So I ussually either suffered by not eating at all or by being sick. I preferred the not eating part much better. I was silly and ate a big breakfast today before we drove off for home and got very sick on the drive home, so that added a lot of stops to our already lengthy drive.

Speaking of eating or not eating, since I was in the hospital 3 weeks ago and started new medicine I’ve lost 20 lbs. I think it’s good but I am getting worried I’m losing too much too fast especially since it’s mostly because I dont eat or when I do I get so sick, I am putting off calling my dr because I dont want to have to find out what comes next, plus I dont mind losing weight that I need to lose, although I know I should do it the healthy way since I know it will be hard to keep this weight off if it’s from not eating cause eventually I’lll have to eat right? or maybe not if my stomach doesnt adjust to this new medicine.

Well theres tons more I want to say but I’m tired so I think I’ll save it for another day…. say extra prayers for Cheryl and Eli this week!!!

It’s snowing! in Ohio at least! and since that’s where we are today that’s all that matters!!! wohoo!! we’re off this afternoon to the mall, not to shop but to volunteer to wrap Christmas presents at the mall w/ our old church. They do it for free at the mall during the peak holiday shopping season. Ought to be interesting!!! Snow, wrapping presents, what more do you need, you’d think it was closer to christmas, but it’s only the day after thanksgiving!! hope everyones having a great week!!

It’s been about a week since i started taking Topamax as just another med to help alleviate symptoms of pseudo tumor cerebri. I was excited because my dr said it helps you lose weight. sure, why not try something that will help me feel better and lose weight in the process. Little did I know what I would lose along the way. I’ve read others blogs who have described it as losing themselves. I dont know yet how to describe it. I definitely am not myself. I at best have described it as becoming someone else or having a personality crisis.

Pre-meningitis and this bout of bad pseudo tumor I was able to complete a zillion feats in one day, although I would say I’d tire quicker than some people but I also would do lots in a days work. Laundry, cleaning, having fun w/ Caleb, drives to the park, walks to the playground, visits to the mall, store and short hour drives away to visit a friend of mine. not to mention getting up early taking Dean to work and making sure to be around to pick him up from work at 5. I’m sure there’s lots more I could mention but hopefully you get the point, the job of a stay at home mom is quite busy. I used to do it w/ ease, I used to be able to do and watch my friends children 2 days a week as well. This week I’ve left the house twice during the daytime w/ caleb( not counting taking Dean to and from work) once to the playground since it was like 60 degrees out and sunny and I felt guilt ridden for having him houseridden cause I was so sick. One day I went out and took him to a friends house so she could keep him all morning, he enjoyed playing w/ her son so that was good for him, and I sat at the shop waiting for our car to be fixed. I think that’s all we’ve done all week. I’ve done my best to occupy his time but it’s mostly been tv time for him because I’ve no energy to maintain keeping up w/ him and the house stuff all day. I’m lucky to get either done well all day.

I used to be able to multi task, now I cant even finish sentences sometimes w/out forgetting what I was saying. Sometimes it’s as bad as forgettting what the word is for what I’m trying to say. I stutter sometimes even because of this. Yes, oddly enough I can write my thoughts out. Sometimes not as quickly as I hoped but it comes easier than saying it.

I wont even go into detail about what this drug has done for my sex drive just let me leave it at I am not devoid of any feeling. Now that statement is true of any feeling really, not just sexually. I feel void of any sense of anything. I tend to be an emotional person. This week nothing. I dont know what to do with myself.

I was talking to my friend today and she said I should talk to my dr soon about it, I am not supposed to see him for weeks. I dont know if I can handle this for weeks. I dont know if it’s worth it to take this medicine. Aside from the negative side effects it’s not making me feel any better as far as my pseudotumor is concerned. Everything I’ve read about the medicine says that these can be normal effects so I dont know that it matters if I call him or not?

I was having a hard enough time coping as it was with being unable to function due to my health now I’m unable to function more because I feel like I’m losing my mind. No wait, I feel like I’m already lost. Not that all of the changes are bad, Dean said some of it is good, so I can see how he feels sometimes, I dont think he understands though that it’s not like I chose to take on his feelings, it’s like someone stripped me of my feelings and replaced them w/ someone elses. It’s very scary. It’s so hard to describe w/out making myself sound dilllusional but I dont what to say. I had to get this out before I called my dr w/ it, I figure if I try to rehearse it enough times it might start make more sense to me and thus maybe might make sense to him, but heck, he will probably understand more than I think or know. Since his head is screwed on tighter than mine is right now. Off to try to get on with the rest of this crazy new life being dealt to me.

I wish you could hire a nanny, maid and dry cleaner all to come to your home when you are sick and bill it to your insurance company. My thought for the day. Maybe I’ll be the great one who makes up such a system and rakes in the dough!! but I doubt it….make it an insurance plan specifically for stay at home moms/dads! wohoo. now that sounds like a great plan…if only there was a way to financially back it somehow?

I was catching up on reading some other people’s blogs when I realized that my life may be complex right now and that I might be really sick, but it’s all about perspective. There are people out there dealing with bigger issues in life. Sure my issues are pretty big ones, but I am alive and breathing (although not so well today) and can enjoy my adorable 2 year old son’s hugs and kisses.

I love my son. He can now count to 15 by himself!! He says his ABC’s almost perfectly w/out coaching. He says thank you w/out coaching and excuse me if you are in his way. He’s quite polite for a two year old! Today he was full of hugs and kisses for Dean and I. It’s been nice. He may be the only son I bear and I love him and am very thankful to God for our little miracle boy.

My hubby. It’s been quite a few years since we met, at least 12 or so. We’ve been married for 5 of those years and parents for 2. For the last year and half I’ve been dealing w/ a rare health condition. Right now the condition is the worst it’s ever been for me. From Jan 2003- Oct 2003 I was drug free and in remisssion from the condition. I went to the dr in October and started a med for the condition as it had started to get bad. About a week or more ago I got meningitis which severly complicated my prior health condition. I am now on 4 medicines and feel worse than I did a month ago when I went into the dr to tell him I thought my condition was back. through it all my hubby has been super supportive and is trying to arrange a sitter for Caleb as often as possible since I’m not phsyically up to watching him all day alone, and he’s even doing laundry and cleaning house(more than he used to ) It’s straining my relationship with my husband, my son, my family and friends . I want to be superwoman but I cant. Today I decided I cant do it all and am going to try to do better to accept help from others as I’ve come to learn I am not up to doing it all by myself. I dont know when I’ll be better or even how we’ll get me to that point. the meds might be helping but we wont know right away. I’ve lost weight, about 12 lbs since I went to the ER a week and a half ago. Thats good but it mainly because I cant eat much without getting ill.

I didnt mean to whine, I wanted this to be an entry letting you know how grateful I am for all the help I’ve gotten and for the great family I have, but when you feel like I do all of the time it’s hard not to be negative, I am trying to work on that, but I think until I start to feel better it will be hard. Our church family arranged for different people to bring meals every other day for a week. Our last meal came last night, or so we thought. This morning when we got to church some friends had some lasagna ready for us to take home with us and my mom brought us some chili today too. It’s been nice, made us not have to go grocery shopping so helped us save money, which we used to buy those 4 new meds, so the meals were truly a blessing. I received many an encouraging card and phone call from family and friend this past week and half. It’s great to have people who care, but today it was hard to force myself to go to church because I didnt want to have to answer the ultimate question: how are you? I didnt want to lie and say fine, but I didnt want to complain and say well honestly I feel horrible. by the time we left church I was so exhausted both from socializing and worshipping. The main problem about talking to people is most of the church family doesnt know about my condition, they were just told I had meningitis and thats it. so the meningitis is gone and that is fine. but it caused my psuedo tumor to be so bad that I am doing pretty bad now, so I didnt want to have to go into detail w/ everyone . So I basically had to make a judgement call and based on who it was asking me the question I’d be honest no matter what and some people I just told I was tired and achy others I told the whole nine yards, including about the tumor stuff. We’re considering sending out an email to the church family w/ more details so people understand more of what’s going on with me and that my recovery is more than just getting over meningitis. Email is how most communication at large takes place unless we are all at the church together. When I was sick we told one person who email the whole church mailing list w/ the prayer request that I was in the hospital and every day they sent an email w/ an update on how I was. It’s a great system. but I dont know if I want everyone to know. Dean says I have an issue w/ pride, and I know I do, my biggest problem is I want to be strong, I dont want to be labeled and I dont want people to feel sorry for me, but I also want them to understand why I may not be involved w/ things for quite some time. It’s a hard thing to do. I dont want to be fake, I dont want to hide who I am , but I dont want to burden anyone either. Does that make any sense?

Well while i sit here writing, I am burdening Dean w/ putting Caleb to bed alone, so off I go to help out…..let me know what you think….

Hello all! My drs appt this morning went well, better than I expected. My right eye is better, my left eye which is the one that I had surgery on a year ago is not better yet, looks better than a week ago but still is pretty bad. So I have to go to my eye specialist for that. I am excited about a new medicine my dr is trying on me, it is for migraines but helps you lose weight. I am already losing some because the other new medicine makes my appetite crazy and makes me feel sick, so with any luck instead of gaining holiday pounds I’ll shed some. I am doing my best to un carb my meals. I went and bought some crystal light, and am going to try to use Splenda when I can instead of sugar. I am such a sucker for holiday cookies though but I know my weakness, so that should help. Of course one of my new meds makes me not like the healthy foods, I couldnt down a salad the other day but I could hold down a brownie or two. How ironic. So with a little help from Dean I think I might actually do well losing weight, I need him to remind me not to eat junk, I am a nut for late night popcorn and chips. I am supposed to be taking salt out of my diet and of course all I have wanted for a week is a bag of salty potato chips. It’s not fair I tell you!!! I figure w/ enough motivation I can do this. The more weight I lose the more likely I am to be feeling better quicker, not to mention will get us back on track for trying to get pregnant quicker, so whatever sacrifices it takes, well kind of!!

This being sick thing is doing a number on our check book, I’m up to taking 4 meds now daily so thats new expenses every month, and the copay for a specialist appt w/ our new insurance is $25. That adds up when you have to go a lot or to many different specialist. My er copay last week ate up $50 we werent prepared for. Not to mention I was babysitting and bringing in money every week, I have now lost 3 weeks of that money and we are going away for Thanksgiving so more money lost that week. It’s so tough. It’s hard to live on a stay at home mom’s salary let alone have someone around to watch the kid when I am so sick. I am having a hard time asking for help, or rather accepting it. This is my job, I want to be able to do it, but I physically cant. So looks like our Christmas tree will be bare underneath this year unless a miracle or five takes place before then. I hate that we live well enough to put on the appearance to others that we have it together financially but we are really just barely getting bills paid or paying them late. Let alone not having any money for emergencies or savings so thus this illness is eating away at our bill and going away for Thanksgiving money. I’m not asking for help, just venting. This is very hard for me. I want to live comfortably but we cant. Not unless I go to work and make lots of money, enough of course to pay a sitter and still bring money home. I have a great prospect for nannying to start in January, but now that I am so sick I might have to say no. It would be great money too, I’d take caleb and bring in really good money and only work 2 1/2 days a week. but there would be 4 children total including caleb and right now I can barely keep caleb. Please continue to keep us in your prayers!!!

I have never felt so tired in all of my life! I slept most of the day yesterday. I awoke w/ Dean early this morning and as soon as he left slept and didnt wake up til 11:30 a.m. I’ve been up for less than an hour and I feel like I just ran a marathon. all I’ve been doing is sitting in front of the laptop reading online. This meningitis recovery is kicking my butt. I was reading about how long it should be before I feel better because of course I am super mom and supermom needs to be up cleaning and watching caleb and my friends kids asap. I can barely stay awake to watch tv or look online. This sucks. My hubby has been great, taking Caleb away from me so I cant even think about watching him. I miss him so much. When he’s around I play hide and seek w/ the bed sheets w/ him since thats about all the energy I have to play w/ him. I feel like Dean is doing double, no triple duty even w/ work and Caleb and housework. I cant do my job. I cant stand it. I am stronger than this right? well guess I am not. I dont see my dr again til Friday, the dreaded appointment when we’ll find out if I’ll get another spinal tap soon or not. The appt where he’ll tell me if the eye damage is correcting itself or not. the OR NOT is the tough part. Not sure what will happen. I am truly scared about my future. we have to put off trying to conceive indefinitely. I honestly think if I hadnt gone to the ER and gotten the spinal tap when I did that I would have lost vision in one of my eyes, thats the course of the disease, the swelling gets bad causing eye damage causing blindness. I wasnt far from the latter I am sure. I knew as my neuro. stepped away from me that things were much worse than ever, just the way he sighed. If I hadnt gotten meningitis I would probably be fine, the psuedo tumor might have gotten worse eventually but not this quickly. If I didnt have psuedo tumor I dont think I would have gotten so many curious drs/med students visiting me at the ER after my spinal tap. Stupid psuedo tumor. Stupid meningitis. They say depression is an after affect of meningitis, I think for me it’s the affect of realizing my lost future.

just one more whine: Diamox makes soda tastes very very metallic! Yuck! I love my diet caffiene pepsi or did until I started this medicine. nothing like a good illness to get you to go on a water and cracker diet. I have an appetite but once I eat I get sick so I try not to eat. Great way to quick weight loss!!!