Wisdom from my walk

For as much as a med student pays to learn you think by the time they got to be a doctor they’d know it all. Doctors suck. Well, okay, yes I like my current doctors, but I hate getting sent home feeling as crappy as I did when I went. I was given RX’s for pain killers and muscle relaxers for my back and told to come back in a month. A month. thats a freaking long time to wait out back pain that is making it hard to walk. BLAH!!!!!!

She said I could have pulled it,I know I didnt pull it, heck I’ve been in bed for more than half of the last three weeks. She said that the spinal tap may have irritated my sacral something or another or it could have damaged a nerve but that the pain I was having seemed to her to be more muscular so nothing really to do but more rest and waiting. My life in a nutshell lately. Staying in bed waiting. Waiting for what?? The guy to arrive w/ our publishers clearing house check so we can pay bills and a sitter for caleb since I am sucky mom these days. More like waiting for 5 o’clock to roll around so Dean can get home and save me from having to try and fail at being a stay at home mom. Todays my day to babysit, but since I went to the dr and was miserable that didnt happen. Another week w/out extra cash. I told myself I would do it today no matter what, babysit. But I know that I can barely handle Caleb on my own these days let alone two more kids. We so need the extra money though. Right now theres nothing we can do. Dean cant work another job because I need him at home as is to take care of Caleb and we soo cant afford a nanny or even mothers helper.

I’ve very full of complaints today. Caleb gave me a rough time and wouldnt nap at all, until of course we get to Daddys work, he sees daddy and immediately falls asleep through the drive home, through being brought in the house, through our eating dinner and is still knocked out on the couch!! I need a nap like that. But right now I just want to be able to put away a little laundry in peace and maybe straighten the kitchen, if my back allows. But who knows. I’ll settle for the peace and quiet that I have right now, the little one gave me a run for my money today which was complicated by not being able to lift him or even hold him much. Which is probably why he was acting so horrible, because he wanted to be held and loved on and played with and yet again mommy couldnt do it.

Tomorrow night this horrible year will end. I am praying hard that w/ the new year comes a bright new start for us as a family and for my health. But I have little hope right now to back that up. If I dont come back here before then, happy new year!!

Not much to write about when you’ve been in bed sick for the last 3 days! I was trying to take care of Caleb today on my own, but dont think it’s going to happen. I have a drs appointment w/ my pcp today and so I’m going to drop Caleb off w/a friend so he can play there while I go to the dr. The cold thats kept me in bed is finally leaving but the back pain that went away as soon as I laid down is back. Or rather, as long as I dont move or try to walk I am fine, but thats hard to do w/ a toddler, so off to the dr today to find out whats going on. It’s hurt since my spinal tap a few weeks ago my neuro said my back still shouldnt hurt so I didnt bother him today and will see what the regular dr says. Hopefully it’s nothing major …but things cant get much worse for my health these days…..

I couldnt have had a better Christmas, well maybe. I did miss seeing my in laws and being sick wasnt too fun, but overall it was a good day. Seeing my son enjoy himself was priceless!! He got the Smart Shopper from his grandparents in Ohio, and it’s by far his favorite toy ever!! My mom got him this desk, which goes great in his bedroom! We gave him a train table w/ trains that someone had given to us, it’s in brand new condition. We ended up putting all of his little people toys on it for now since he got this from my brother. He got lots of other little things too. Too much to mention. The best part was we hardly spent too much money on him, and what we did was money we weren’t planning on having. We had resigned ourselves to having a small christmas this year since I havent been babysitting we’ve had no money to play around w/ let alone pay bills on time. So last Sunday after church we were handed an envelope w/ cash !! It had enough money to pay an important bill and buy some family members gifts that we hadnt planned on getting. It was a true blessing!!

My favorite gifts for us have been my in laws paying our car pymt this month! Another true blessing, and my mom got us tickets to see Cats at a local dinner theater! I really wanted that! And my grandparents gave us restaurant gift certificates, so now all we need is to find babysitters and we can have some much needed date nights!!

But it’s not all about the gifts. I had a few precious moments enjoying my son yesterday that I’ll only get at the holidays. He played w/ his grandfather, my father, and loved being w/ him. Now I dont think he knows who he is since we havent seen him in a year or so, but seeing how Caleb love him unconditionally despite that amazes me. It touched my heart in a special way. A way only something like that could. I needed that yesterday, I didnt know I did, but I did.

we spent Christmas eve evening at church then went to my friends house to exchange gifts. A friend of Dean’s from work had come w/ us to church for the first time so we all went over to my friends house together and the adults snacked,talked and played games while the kids enjoyed one another. I think we all needed that, the time spent there was a gift to many of us that evening, and I know only God could have worked it out so perfectly that night. We had a great time and so did the kids.

All this running around and being busy is not helping my recovery much, and I’ve been quite sick but am now hiding it better, or so I hope. My best friend asked today how I was and she said I hadnt said anything in a while about how I was feeling, I laughed and said horrible. She asked if I was just ignoring it and I said yep. I know if I give in to how I am feeling I’d be in bed all day and miserable, now I am just miserable and forcing myself through the daily motions. I dont know which is better. I get myself worn out and feel worse at the end of the day, but I get things done and get to enjoy my family and friends. I just dread having to call the dr and tell him I am still not feeling better. I know that will lead to things I dont want, like discussions about surgery or more meds. I’d much rather enjoy what I can even if I cant fully enjoy everything. My biggest gripe for now is a nagging headache and not being able to enjoy my moms yummy christmas cookies ! Well I can eat them, sure , but they taste horrible!! It’s driving me mad. Yesterday at her house I tasted a bite of every kind of fudge she had and every kind of cookie hoping something would be good and it was all disgusting, meanwhile everyone else raved about how good it was. About all I enjoyed was some potato salad! Yeah, I figured I could whine a little!

Hope everyone else had a great holiday! I probably wont be around for a little while, the puter doesnt help my head feel any better and at best sometimes it’s even hard to read so I’ll be taking a break for a bit. Have a great new year!!

Been a long week around here. I can’t believe next week is Christmas, or even that in two weeks its a new year! The last few months have flown by for me. Last night and today seem to be draggin on forever though. I had a rough night, felt so bad last night that I was about to go to the ER, thats a bad thing. After a not so good nights sleep I feel a little better. I think it has a lot to do w/ laying down or not. I feel fine when I am laying flat in bed, but as soon as I get up I feel horrible. I’m sitting up now and even that is too much pain. i am trying to avoid going back to the hospital at all costs, and am awaiting a callback from my neurologist to see what he says. I dont want to go to the hospital but I also cant stay in bed forever, but at least it’s Friday. My friend has Caleb today so thats good, and Dean will be here all weekend for him, I’m not sure if Caleb seeing me in bed sick is better for him than not seeing me and knowing I am at the drs house(code name hospital). All I want for christmas is a miracle or five!!!

i think my sleepless night is catching up with me, a friend had brought us a beautiful cheesecake and beef stew last night. A little while ago I was trying to fix myself lunch and in the process of trying to get a peice of cheese out of the fridge i knocked the beautiful cheesecake complete w/ cherry topping all over the floor and it ended up all over! i cleaned up as much as I could but bending down makes my neck and head pain so much worse so I, for once, left a mess. dean said to leave the whole thing where it was, but I couldnt get in that much. I managed to clean up as much of the cherry topping as I could.

well back to bed again, what a boring week! Hope the weekend proves better!

I think I have the baby blues. I thought for sure we’d have another child or at least be pregnant with our second child by now. Now we dont know if or when we’ll be able to consider getting pregnant if at all. i am sure this is just a hormonal thing today, but it’s hitting me hard today.

Thanksgiving was hard for me too. We went to visit Dean’s family and having to see my brother in laws very pregnant girlfriend being pawned over like I was when I was pregnant hurt. I know we dont live there and it’s hurt my relationship w/ his parents, but now that she’s there I feel like she’s taking my place. Shes young and will no doubt be more than able to provide more than just this one grandchild to the family quite easily, whereas I am beginning to doubt I’ll ever have the chance again. At the same time my sister in law, my brothers wife, is also as far as long as my brother in laws girlfriend, is having a rough complicated pregnancy at the same time. I cant wait to hug and love both babies but it still makes me want to be able to have another baby of our own soon.

The longer I deal w/ this illness we continue to lose chances of ever being able to get pregnant again. this condition I have often leads to menstrual irregularities which have hit home in the last year for me, which eventually leads to infertility. this is something I cant control but I still feel guilty for failing to be able to fulfill my husbands desire for a house full of children, as well as my own desire and that of our families.

I have been meaning to write about this, but I know that some readers out there are touchy about when I write about being unable to get pregnant especially since we already have one wonderful son, or because they know I am envying them and their new babies or babies on the way. I dont intend to offend anyone, this is my space and the place where I feel freest to open my heart and mind. I am a quiet person and unless I am very close to you will not discuss these things w/ you in person or even on the phone because it is so difficult for me. So I use this space as my outlet for these feelings instead of keeping my hurt deep down inside where it just hurts me more although it may not bother your comfort zone as much.

we all grow up with dreams, mine was to be a mother and wife to the man of my dreams. the man of my dreams has a heart and passion for people and children, such a big heart that he desires to fill our home w/ many children whom we can love and grow to be passionate parents one day themselves. we’ve known for years, probably since we discussed marriage and eventually children that this plan for our lives would include our own children and possible foster children or adopted children, I just never dreamed it would mean only one natural child and a home full of children that I didnt bare. Right now this isnt t really an issue since I’m so sick, but like I said today I’m thinking about this a lot so I had to share. Thanks for listening.

for those of you dying to know how I am recovering today, let me just say, BLAH! when your dr tells you to lay in bed for 48 hours I guess you should listen to him. I didnt do such a good job of staying in bed yesterday and am now paying for my sins. My wonderful brother took my son to go visit his great grandparents today though so it’s been nice to be able to lay in bed all day, and yes, today I’ve done a much better job at that than yesterday. The true test comes tomorrow when I have caleb all by myself again. well back to bed w/ me, just wanted to check in here.

In other news, it is a nice day to lay in bed and stare out the window. It’s snowing, enough to look pretty but not to lay on the ground and make a mess. So back to enjoying my warm comfy bed overlooking the falling snow outside. It sure is nice to get a day off but i wish I could spend it differently then keep getting sitters and having to spend my days in bed.

Bedrest just isnt the same when you have a tv w/ cable to watch, a laptop you can surf the web on, and a phone to call all your closest friends with. Well, for the first hour or two at least. Now I’m starting to get bored, but I’ve yet to turn on the tv so I’m sure I can find something there to interest me when I’m done w/ the internet.

My spinal tap went well yesterday, it seems a little more painful than the first 2 I’ve had, but cant help but wonder if that’s because the area might still be healing from the one I had last month. I did notice though after looking at my back in the mirror that he did it in a different place than he did before, guess it had to do w/ how I was laying on the table differently this time. A normal spinal fluid pressure for someone w/out PTC is 10-20, last year when I was diagnosed w/ PTC my number was a 35. When I had meningitis it was ridiculously high, like 300 or something like that. Yesterday it was only a 27 which is good or rather better than before, but still not normal, and the goal of all the meds I am on is to make that # normal. So not sure what that means, it does mean that the meds are helping because in a month my pressure dropped dramatically and is even lower than it was last year, but last year when I was at a 35 I wasnt even on medicines yet for it. So, tomorrow morning I see the dr to see what’s next. I know there are people w/ PTC whose pressures are always over 100 or higher constantly. so when I know mine is a lot closer to normal than others that helps but I also know I still feel symptoms when it’s as low as it is now. And the reason I dont get headaches as badly as other PTC may be because my pressure is lower than theirs plus I’ve had eye surgery to help the headaches. But i still get all the other great PTC symptoms and pretty badly on the bad days, and almost every day I contend w/ the annoying noises in my ears and nauseas. The spots in my eyes are not always daily but have been at least 5 out of 7 days a week. and I constantly battle w/ increased sensitivity to light.

So we know the diamox and lasix treatments are helping keep the pressure down which means I will probably have to stay on the meds. My dr said to me yesterday he was hoping it would like a 10 and then we could try to go off the meds to see if I do okay. Now all we know if the meds are helping and even w/ them the pressure is not at a normal level. Sooooo, I was hoping it was low or very high, if it was very high I would know that the diamox was no good and I could pursue a shunt, with knowing the diamox is helping even though it makes me feel worse because of it’s side effects I dont know what to do next. I want to see maybe what happens if we go off meds anyway even though it’s not at a normal level. If I dont try to get med free I wont know for sure if I can do it med free. The only concern w/ going off the medicine is the risk of leaving it untreated which could lead to further eye damage if the pressure continues to rise. Blah. It stinks. We’ll know more tomorrow, guess there’s no point in speculating til then.

I miss my baby boy. I dropped him off to my mom yesterday at 1; he’ll get home this evening after Dean goes to pick him up after work, which means I wont see him til 6 or 6:30. It was odd to have a quiet house last night and today. It would have been nice under other circumstances, but when I am on bedrest, and cant fully enjoy being in bed alone w/ my hubby in a big quiet house, well it just stinks!!

over the last few months we’ve babysit some friends (two different couples) kids diferent times while they each took their spouses out for a suprise night out ending in a hotel stay while we got the kids. I know these couples have a lot more money than we do, but still. I wish we could do that or at least something!! This last time the one couple told us that we need to go out and have them sit for us, and I mentioned w/ the hubby in the room that my birthday is soon, in hopes he’ll get the hint, but if not, he’ll know now that he’s read this. I know it’s not good to be jealous of others peoples fun and money, but when it’s completely out of our hands when I cant work because I am sick, it makes it hard not to want what others have. I want a normal life for me and my family but right now I’d settle for a content life, but its hard to be even that when the future is so unknown to us and we dont know when I’ll be doing better.

I can be content this week to know that Caleb has a loving family around to care for him, but I still feel like I am failing him. I told him yesterday morning that mommy was going to the dr and that she needs to rest because she is sick so he was going to stay w/ grandmom and pop pop and he said mommy sad mommy go dr mommy sleep and I said yes and he said ok. he said i want mommy. it broke my heart. I held him a lot yesterday. I know he’s young to be talking to him like that but he’s the one who the other day when I was upset and crying to Dean about feeling bad came over and told Dean Mommy have headache. Neither of us said the word headache, but I know in the past i’ve told him no yelling because mommys head hurts or He knows when we go downstairs to the playroom we only turn on a lamp not the big light for the room because it hurts mommys eyes and the other day I turned the big light on so he could play and I could clean up better he said no mommys eyes hurt. I am a firm believer that you tell a kid what they can handle. he knows that there are days when mommy is sad and days mommy is sick, and on those days he’s been known to come to me and hug and kiss me and say mommy all bettter i want hug momma . He’s a smart little boy. he’s been known to hug other kids a lot and when a baby cries he will go over and pat their backs or their head and talk to them softly. i’ve seen him several times sit next to his play mate on the couch and rub her back as they watch tv. he’s a passionate little boy. he loves people. it’s something I know he’s picked up from his loving father. Dean is a very compassionate person and feels deeply for people, i see that same thing in our son. It makes me happy but i also worry that he will one day feel too much for others and get his heart broken one too many times from it. i know our son will handle the stressors in our family life better now that i’ve started to tell him mommy is sick or tired or sad now that he knows what that means as opposed to our shipping him off to someone else house when I was in the hospital and him not knowing why. i think if we had told him then that mommy was sick and needs to rest that he would have been much better w/ being left at someone else’s home. kids understand a lot more than we give them credit for, and I hope one day our son thanks us for our honesty and that these early days of dealing w/ mommy’s sickness dont haunt him as a horrible time in his youth but as a time when he was able to be closer to mommy and daddy and know we did our best to care for him even when it got hard. dean says he may never remember these things but I think he’s awfully smart not to one day look back and say he remembered mommy being sick a lot. i just hope he can do it and be joyful that mommy is now all better as opposed to knowing mommy never got better.