I know I am getting my hopes up already, but...I spoke to my neurologist today and he says he still wants to try to take me off my one med since it makes me feel so bad. So tonight I start a lower dosage. If in a week I have no added or increased PTC symptoms then at that time the dosage will drop again and so on until I am off the med!!! I'll still be on one medicine but I think thats fine w/ me, for now. My biggest thought right now is that if this works, if this is truly the miracle we've been waiting for, then we might be able to start thinking about baby # 2 again!! I dont think theres as big a concern w/ taking my one med and being pregnant, at least not as big a concern as taking the other one and getting pregnant. I know I shouldnt get so excited about something that might not happen, but for once in the last few months I actually have hope about feeling better soon. Now we just wait and see what happens!!!!! Say lots of prayers for us!!! I know this might just be temporary for me, going off meds, but if it gives me enough time off meds to get pregnant and deliver a healthy baby than I'll take it!! The waiting and seeing approach is never the best for me, but if I can at least have something to look forward to if it works out then it's worth it. As opposed to the last few months of not knowing what was going to happen, I know at least now I might be able to enjoy food again soon!! We'll know more in a day or two after the dosage has been dropped, so heres to a bright starting new year!! WOHOO!!!
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.
In my rushed attempt to get last minute stocking stuffers for caleb and dean, and a need to go grocery shopping and to the post office, I have already worn myself out. the reason for the rush is because we had no money til Dean got paid today, so now I can go to the store and I know I'll be out of commission most of the week due to my spinal tap which brings me to my deadline, I have to take Caleb to my moms around 1 so I can be at the hospital at 2. and not knowing when I'll be feeling better after that makes it hard to know ok, I can go shopping next week if I need to but not sure that'll happen. I'm already worn out and thats before my spinal tap. well caleb is demanding attention and there's ton to do around here like packing my son for his overnight w/ his grandparents, which in itself worries me. He'll be gone from us til around 6 tomorrow. I will miss him so much!!
So off to get tons done before my wonderful spinal tap this afternoon!!!
Ok, so I know Saddam was captured, but it's also snowing and icing outside, so I wish the news would address how our lives are currently at risk if we leave our home or not in this weather as opposed to something that I am sure we can only hear the same thing about over and over again so often, or rather that they can talk about after they let me know what it's like on the roads today!
it's friday night, we just got back from a christmas party at church. I ate way too many chips esp. since I am supposed to avoid salt and am a few hours behind on taking my meds for the night so I'm getting to feel a little bad. But overall I did a lot more today than I've done in a long long time. I took Caleb to the mall, one that has an indoor play area since it's way too cold outside for any fun there. Then I managed to fight w/ him at the grocery store and get the things we need to restock the fridge for the weekend. The hardest part for my going grocery shopping is loading and unloading groceries, and having to go up our stairs to do so doesnt help. By the time I was done that I was ready for bed, but I'd promised to make a cake for the party tonight so I did that and then worked on planning some games for the party. Nothing like the last minute. Needless to say I never napped and by the time we should have been leaving to go I was a miserable mess, but Dean forced me, well kind of, to go. I am glad I did I ended up having a great time. And my games occupied everyone for at least an hour! But now I am really tired. But it was nice to finally make it through a day w/out a nap and get a lot done and know I can do it. Although I might not feel great, I can do it.
Caleb threw a fit at the mall when I wouldnt let him go see Santa. This mall has it so unless you go into Santa's house you cant really see him unless, like me, you do your best to find a window a toddler can see into! Caleb wanted to say hi to him, but I was already exhausted and didnt want to deal w/ a possible tantrum if he got closer and decided he didnt like Santa. So I convinced him that Santa was too busy today and that mommy talked to him and he said we could go to his house tomorrow to visit him. So all afternoon he kept saying I go to santas house later. I kept saying tomorrow, but he was gonna do his best to convince me we'd go today. So looks like we'll be fighting lines at the mall tomorrow so Caleb can see Santa. I think watching all the kids movies on tv lately about Santa and christmas has had an impact on him. He is in love w/ reindeer and santa and snowmen. i am so happy. It's a great season and there's no reason for him not to be interested in Santa. Heck, who wouldnt like a guy who gives everyone a present they want!! or mostly.
well its to bed w/ me, 2 days and counting til my spinal tap. I'm nervous yet know what to expect the worst part will be finding out how high or low the presssure is and then making a new treatment plan based on that info. I'm trying to do as much house work and quality family time as I can this weekend so next weekend when I am in bed all week I wont feel so bad about it. Have a great weekend everyone!!
I went to my eye drs today w/ the hope that no matter what happened that I would walk away being able to say yes I need eye surgery or no I dont. I didnt want to be the one making the decision. My dr told me my eyes are perfectly healthy and he doesnt know why I am having the problems w/ vision or floaters that I am having. Seeing as he was the one who did my eye surgery last year, I am hoping he was tellign the truth and not trying to admit the surgery failed and that it needs redone. Dean doesnt think this dr would do that and I hope not, but....it is good news for me. I dont need to consider eye surgery. It doesnt help us figure out what is causing these symptoms, or rather is it just too soon for him to see the problem yet, are the symptoms showing up because the condition is worsening and because I had surgery the eye wont be further damaged but it still gives me symptoms that I had pre surgery? Who knows. I know I dont. I know I should accept this as proof that things are getting better but it's still hard. I still feel sick and the symptoms are the same. So now we wait for Monday to see if the spinal tap clears up any question about why I am so sick. So pending how that goes and if lowering my dosage of meds helps me feel any better, we will then decide whether to stay on the meds for longer or to go ahead and talk about getting a shunt put in. I dont think my symptoms are bad enough to warrant the shunt but if I cant go off the medicine to keep the pressure from rising then it might be worth it. If not I stay on these meds and get sick from the meds, if I go off the medicine I get sick from the elevated pressure. As is I am having symptoms still of elevated pressure so does that mean I need more medicine??
I could have lived very happily w/out ever having to deal w/ this condition and the daily struggles of it and the horrible effect it's having on my marriage and son. Would I be the same person in the end probably not. I dont think I've learned the lesson yet that God wants me to so more waiting. yes, I've always never been good at being patient w/ God. Let alone w/ trusting anyone even Him. I have tried hard to give this to Him but right now I feel so alone that I dont think I've done that completely. I know I've been trying to do this on my own and I dont have the energy to keep fighting w/ Him about it, so I know I should just give it up and let Him take control. And since I lost control of this whole battle about a month ago anyway theres nothing much left for me to hang on to, it's just letting Him get close enough again for me to know that though He's allowing it it doesnt mean he's causing it. I blame Him. I blame myself for being a horrible person. It's making me mean and angry.
Looks like I've come to grips w/ things a little more today, dont know why I cant just look at today's appointment as a blessing. If I felt better I might accept it as so, but just because the dr said it it doesnt take away my symptoms. It's like saying I have been healed then walking into the ER because I am bleeding profusely all over the place. How can you accept something when what you see and feel are so different than what you are being told. I thought faith was trusting in things hoped for and not seen or something. I can see the symptoms I can feel them, and I hear the dr say my eyes are ok, but it's like saying you're someones parent but the DNA test saying you are not. Dont know if I am making any sense and I dont really care if I am. This is my blank page and I had to write to think it all through for myself. Sorry if you're more confused then you were before you stumbled along my page. I feel like lately all this is about is my sickness and the sadness that goes with it. I am sorry for that, but if this is the only place I get that out of my system than if anything I'll keep doing it for me and I wont mind if you decide to not come back for a while .
Meanwhile my baby boy is trying to sleep despite his waking every few minutes to cough horribly. It's breaking my heart to hear him be so sick. I imagine that's what God's been saying about me lately. I only wish I had the power to make my baby boy feel better. He told me today that he doesnt like mommy that he wants daddy. this was no after telling him no or yelling at him, it was while I played a game w/ him on the computer. I know he knows I am sick. He's been to several doctors' office waiting rooms lately and all he knows is mommy is going to the dr. I asked him today why mommy went to the dr and he said momy go dr I go w/ Daddy. that's how it's been. Dean either goes w/ or keeps Caleb so I can go. Today they went w/ since I couldnt drive very well w/ my eyes before or after the appointment. Caleb fell asleep in the dr's waiting area while I was taking a test and seeing the dr. I hate that he has to go through all of this. Once we got home and Dean went to work we took a nap together, he woke up and played in his room while I continued to try to sleep for another hour. He's hardly been out to play w/ friends or to do much until daddy gets home from work. I can understand why he wants daddy and not me. It still hurts though, it's not like I am hungover and cant play w/ him, I am just too sick or tired to. I do my best to make sure he has time to do art work w/ me everyday or lately to bring a bowl of snow in the house to play w/ w/ me or tonight we made a huge mess w/ packing popcorns! But w/out those naps I would be rendered useless to him for those times even if they are breif compared to the whole 9 hours I have him alone w/ me all day. It's no life for a two year old, but we cant afford a nanny or even a mothers helper. Next week he will have fun as my mother will have him two days and my brother and nephew will be up one day to play w/ him. Tomorrow I am hoping to take him to a nearby mall that has a playground in it, but that's if his cough subsides and my energy level gets a little better. He's the son I waited for for 3 years, and now that he's here I feel like I've abandoned him.
is it friday yet? caleb has finally hit his terrible twos, or something. It's been rough lately, he screams and yells and has fits if you tell him no or try to get him to do something he doesnt want to. he used to be a great listener and never gave us any problems, he's now testing the waters I think. I just dont have the energy to stand my ground on things so end up giving in which makes Dean upset and I am sure doesnt help him learn to listen to what we say, but I just cant do it right now. Today I've got his fussiness to deal w/ and I'm babysitting and as always if you tell the other child no or to do something she simply doesnt want to she has a huge fit. Between the both of them I am gonna lose it. it doesnt help that I spent a good deal of my morning very sick, not sure what cleared that up other than the medicine I took, which is good because usually when my day starts like that it takes a while for my stomach to get back on track. I'm ready to crash. the kids are asleep so theres no time like the present. hope everyone's having a good week so far.
Talked to my dr today, again. He called the dr I am going to see on Wednesday, then we scheduled a spinal tap for the afternoon of Dec 15th. So on Wednesday I see the other dr who will tell me what options he has for me as far as treatment goes. The one I am pretty sure he will offer me is the same surgery I had last year which obviously failed. But I wont know for sure til then. The last and final resort by both doctors would be to surgically implant a shant in my spine that drains the excess spinal fluid to my stomach. I am not too keen on that idea but I also can not keep living w/ the side effects of the medicines I am currently on to treat my condition. So right now I feel very lost and confused and unsure of what will happen in the next few weeks, months even. For right now, I'll take the advice of my wonderful hubby and take it one day at a time. If it were only as easy to do it as it is to say it.
we are actually decreasing my one med today to see if the side effects go down any but w/ that comes the question of will the other symptoms its been preventing or well at least making them less noticable get worse. It's a crazy road ahead of me and like I said I am not sure where it will lead us. Thanks for sticking it out w/ me though!
Keep telling myself I should have gotten a spinal tap on Friday.....blah!!!!! I'm home from church, should be resting but that would be giving in to the fact I feel bad again. Dean will be getting home after church and bringing w/ him a group of friends we invited over for lunch. A quite large group we invited, but we've had a lot of people say they are not coming. Me all I want to do today is stay in bed and sleep, but not really. What I really want is enough energy to get up and go Christmas shopping or at least out somewhere. Yesterday I fell asleep twice sitting in a chair in the kitchen, that's how tired I was. This stinks. So off to bed w/ me so I can be a bright and cheery host in a few hours. Hopefully a little sleep will make me feel better.......
Another 3-4 inches of snow this morning to awaken to! It sure does look pretty!! Dean bought this yummy smelling cookie candle and we burned it last night and it still smells delish in here. Yummy!! now if we just had some great tasting cookies to fill my desire! I'm more a cookie person than a cake or ice cream person. Anymore i'm not much on food at all, but I am sure I'd give any peice of chocolate a taste if I had some!! Not sure my taste buds would cooperate but I could try!
Have a great snowy weekend!!!
BLAH! that's how I feel. Funny the way I write and say it sounds so different from the humorous way a puppet on Baby Mozart says it, BLAH! Caleb's been watching that a lot lately, mostly cause the tv w/ dvd and vcr just happens to be in our room which ends up in me sleeping while Caleb watches something on tv. A horrible thing for a two year old I know but it's not like he's watching Springer and there will be brighter more exciting days, we hope. No really, I usually start our day this way so there are brighter and more exciting afternoons for him or even just later morning hours.
Had an uneventful doctors appointment, aside from how I could have made a great story out of it had I taken him up on his offer to send me downstairs to get a spinal tap today and then get sent home from the hospital shortly thereafter. Although quite a temptation for how to spend my Friday evening, I neglected to take him up on his offer and came home to a horrible evening at home. Caleb is grouchy, he's getting a molar or whatever those big teeth in the back of your mouth are called, I just cant get words out lately, so we are hoping that's all his problem is, that or he's got major terrible twos happening all of the sudden. He finally collapsed in bed after a long bath and a dose of motrin, and after listening to a zillion books I read him. So he was fussy tonight. I was fussy about having got mostly bad news from the dr or rather no good news. Dean was fussy as a result of all of the above but still he was sweet enough to make me the chocolate chip cookies I've been wanting for days even though he hates baking cookies. I've got a list a mile or five long to get done by Sunday, we're having a party here, bad idea to host when you are so sick, but it gives me motivation to get out of bed and clean. The housework has been getting done mostly by Dean which is fine but I have high standards for a clean home and lets just say his idea of clean for a party and my idea of that are two different things. I managed to clean the bathrooms and vacuum some today all which wore me out immensely and I am sure added to my horrible mood. Awaking to 4 inches of snow may be nice but not when you have to figure out how to get to a drs appointment in it. I'm a grouch. I admit it, I'm sure there's a stronger more suitable word for my attitude tonight but I'd like to think when one is sick they should be given at least some slack for being moody to others. Although I dont condone my attitude I dont think it's fair I should be expected to be all smiles and energy when I'm just not doing good. Not doing good, facing some major health decisions and having to figure out how and when those things will happen and what that means for getting childcare for Caleb and also means more lost money for not being able to babysit more once I make some of these decisions. It's a huge mess. My life in a nutshell that is.
Dean just headed out to meet some friends at a coffee house. I feel like I've been trapped in a bubble for a month, sure I've had chances to go out places but by the time evening rolls around after taking care of myself, caleb and the house all day long is just more than I can take and add to that an evening out, although it might be a relaxing night out w/ the gals, it still requires some energy which I just dont have. I made myself go out Wednesday night but then of course that made me feel worse when I woke up Thursday. Blah. That's about it.
Well despite my nagging bad attitude I do have to stop and add that my son has been loving the snow. we put his snow suit on and let him play this evening and he cried when he had to come in. He just kept playing in it and falling down in it. it was adorable. I took some pics, not sure when I'll get around to posting any though. Maybe have Dean do so tomorrow. hint hint Dean!! So that was Caleb's bright point of the day. He needed to be out running off that energy I am sure, and he just loved it.
well tomorrow looks to be a quiet around the house day for us, which means lots of time to rest and clean. we did our first christmas shopping tonight. caleb wants the things we got for his cousin, he kept saying they were his. so we had to promptly hide them. Not that he's old enough for them but all he knows is the packaging makes it look fun so let me in that box gosh darn it!!
well the house is quiet theres fresh baked cookies on the counter and a bunch of christmas cards to write out. what a way to spend a snowy friday night!!
well our little boy loves the 4 inches of snow we awoke to this morning! too bad it wasnt enough to keep dean home from work. So we'll wait to go out to play til he gets home, which may be early since he's got to come home early as is and take me to the dr and guess pending how the roads and the time he may come home or choose to to go back to work. Guess it also depends on how well my appt goes. I've been quite sick since yesterday but now I'm wondering if Caleb and I have just caught a bug, which makes sense because the baby I watched tuesday had a 101 fever all day then. He's just clingy and got yucky diapers and well me, I am always a mess. Well thanks to our crazy schedule today we'll have to nap early, so here's hoping this fussy boy is acting fussy becuase he's ready for an early nap.
In other news, a friend from church came over last night and did a lot of repairs on drywall to our house. It was nice, except I was trying to sleep and they were noisy, but it was a small price to pay. We've had tons of holes in different places throughout the hosue since we bought it and after we got the house livable and all the big fixes done we left the little ones, this is year two here and we are now finally getting the rest done. It felt great to go downstairs and see some work had been done and now if Dean just finishes it we'll be good to go and the house will finally be up to par, for me at least. well the fussy boy continues to get worse as he wants to go outside now and mommy is too sick to do so lucky me, why Dean cant get off when it snows drives me mad. Argh. gotta run..........
I talked to my dr today, my blood work isnt back yet, something about my insurance company and how they process the lab order. Even though I went to the hospital lab where my dr works they sent the blood work out to be processed so he has to wait longer for the results. He was concerned about how I was feeling and my symptoms so he said he wanted to see me as soon as possible, which for him is tomorrow. I am supposed to see my other specialist next wednesday but he's out all this week on vacation or something and my dr that I spoke w/ today said I should be seen before next Wednesday, and that's before he's seen my blood work results, so that scares me a little bit. Hopefully the blood work will clear up lots of questions for us and hopefully it's as easy as giving me some vitamin supplements or something like iron pills if not the outlook may not be so good. So today's been rough, I've felt bad, very bad actually and had a lot to do since I was putting off grocery shopping as long as possible since it really is hard for me to do physically now, but seems they are calling for some bad weather tomorrow so Dean thought I should get as much done today as possible, which would be fine if I had his energy or better yet Calebs!!
Congrats Cheryl and Schaun, but Eli still needs our prayers!!
Figured I'd end on a happy note, did I mention tomorrow may be our first snowfall this season! wohoo!!
My son turned two in August, he's always been a great napper. Today is no different. I dont know what I'll do when he realizes he and Mommy are the only ones left in the world that nap in the afternoon and decides to ditch me for something better. I need nap time, for me personally and phsyically now too. Since I've been sick I've tried to make days where I dont nap but I never make it or if I do I barely make it through the evening w/out loading all the dinner and other housework and Caleb care onto Dean.
Yesterday I babysat for the first time since the end of October, and it was quite an experience. I made sure at nap time to give myself 30 minutes when all 3 kids were sleeping for my own nap and I did, and sure enough 30 minutes later the baby woke up crying. Sure I would have made it through the day w/out a 30 minute nap but at that point I felt like I was barely getting by on energy and didnt know how in the world I'd make it til 6:30 when they were supposed to leave. But we made it through.
I should talk to my dr tomorrow and find out about my blood work and stuff. I have an appointment next week w/ my eye dr who did my surgery last year, I am really dreading that appointment, it's a major turning point for treatment. Things have hopefully improved themselves over the last two weeks but after how I feel today I have to wonder if thats true. But I may have just done too much yesterday. If things havent improved then I really dont know what the next step is, thus what I'll find out next week from that dr. He holds a lot of answers for me, ones I am scared to hear answers to.
This time last year we were battling these same questions and at the same time I was working full time. I ended up getting fired from my job because I missed so much time from work being sick and w/ emergency dr appointments. I cant believe it's only been a year. I feel like I've been a stay at home mom for longer. After I got fired we decided we knew I'd lose our health insurance there so the surgery I needed had to be done asap and thus the day after christmas I had eye surgery to correct eye damage from psuedo tumor. Theres no rush this year as far as having to worry about losing insurance, so at least we know we are stable as far as a job for Dean, at the time Dean was contracted and didnt have health insurance for us. So not only was I providing us w/ a decent salary but health insurance. Since then we've felt because of my condition and the cost of childcare it would be wise for me to just stay at home even as we struggle financially. Now we wonder if I should have sought out sooner if I was eligible for any kind of disability or compensation for getting fired due to a true medical condition, since that is quite illegal. At the time my bosses knew the situation they just didnt care. Funny thing is I worked for a health insurance provider, if anyone should understand how important someones health is it should be them, but no wait, I should no better than that.
needless to say, looking back its been an interesting year. Things have come around to us again, the same struggles yet somehow different and somehow easier. Having good friends around that are willing to help out makes a huge difference, I think if we had this relationship structure last year I might have been able to pull through more sitters and find more ways to get to work when I couldnt physically drive myself. But we didnt, yet we've made it through. we made tough decisions a year ago, and since then we've had many blessings despite my failing health. Countless times we've wondered if I'd be able to go back to work soon and things wouldnt work out or I'd get ill again. So we know this is part of God's plan for me to be home, but like I told Dean yesterday, it's hard to be the one writing out the bills and pushing aside some bills to pay late because we dont have money to pay it because I dont work and because I physically cant. He says he understands, but I think theres somethings men just will never understand. Being a stay at home mom and making sacrifices for the decision to do that is one thing and I am sure Dean understands how important it is to me to be home with my son, but I dont think he equally understands how important I feel it is that I should be making money for us when we are struggling. If it wasnt Christmas time this might not hurt so bad, but being sick and unable to provide and care for your loved ones when that is your primary job makes my heart break w/ every day that I feel like I fail them.
I just got off of the phone w/ my doctor, he has decided to take me off of the newest medicine I am taking, topamax. Fine w/ me, in a few days I will hopefully be back to myself, at least somewhat. Last night I got lost in a walmart parking lot, it was a bad experience, luckily Dean was still inside shopping and came out and saved me, not sure what would have happened if I had been out shopping alone. Did I mention I had Caleb w/ me?
I persuaded the dr to order some blood work, not sure if he was gonna mention it before I did or not, but he sounded ok with the idea and ordered several tests I was suprised he thought to think of, like checking my thyroid, which always pleases my mom, since all of the women in my moms family have some sort of thyroid disease. I told him I would just feel better to know things are ok considering I am not eating much at all and I am concerned since I am so tired and having shortness of breath. Well we are headed out to see some friends, good thing I can drive there in my sleep, so we should be safe to get there and back!! now getting to the drs office later today for blood work might prove a little harder..... I really should have my license taken til this medicine is out of my system....