hurdles

i should've been in track i am finding. there just is so many damn hurdles with ph. i would've been able to jump so high over them. i always say when a door closes another opens, or force the sucker open. well my arm is getting real sore.

bailey got me thinking..... i have all the fears, usually at night, i think that is normal, please tell me this is when most get them? i will cry yes, but i say buck up, i let myself do this once and a while for like a whole 5 min. i don't want my kids seeing, or hubby all the time, but yes i do need this and i decompress late at nite. i think that is why people w/ph and some other disease's don't sleep well at nite. minds wander.

now what would i say? i love u at least a hundred times. i want them too all be happy. i do want my pictures around. i want them to remember me. please don't ever forget the things i taught u or the memories we have shared, but don't stop your life either. life stops for nobody. i just don't think i could get 6 min. or small amount of time enough.

i wanted to write letters to my family and have them opened, when the time comes. i still think i might do this. of course, i am far from this point. yahoo. but we do never know......... i maybe will start, by telling the kids when they were little and making small journals for them. i do have baby books, but this would be in more detail. then to my marriage to my husband. he isn't a real mushy guy, but hey. i am sure he would get some ejoyment out of it, maybe the word i am looking for is peace.

well i am going to start my day, because i can and that i am thankful for. i know it doesn't seem like it sometimes, but i am.

with all the different personalities in these diary's it always makes me think of something new. i love it.

thank you friends

sheri

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update

thing here have been going ok,stable is the word i am looking for. i am having more of the naping days still, which disappoints me... i had a burst of energy a while back and it was a taste of the nice life. it is now gone, so i am morning for it again. i will just keep pluggin away at life and hope for the best. june is when i get medicare and hope i can add another med. to the mixture. i think that is where i stand.

well chats started back up on march 1st. they went awesome. we had so many people. we was nice to see new and familiar people there. i really enjoy chatting, and love when the new's recently dx can get some questions answered from us veterans. it is such a scary time, remebering back to when i was dx. i was to scared at the time myself to join in the chats. it took me severall months to do it, but i was sure glad when i did. they sure helped me out and made me feel so welcome. i am glad i can return the favor. i don't want people to have all those horrible newly dx feelings and have nowhere to go or turn too. thank you all for coming.

we got a update in chats from annie, that was a surprise to see her there, with all going on. i was so glad she thought of us and let us know how things are going. this is such a trying and busy time for them. tim is critical, but stable condition is what she said. he is on the transplant list and waiting for the donor. i pray he gets it in time. tim is such a insipration the way he just keeps fighting. what a truly remarkable man.

the i-neb seems to be doing ok for me, not as well as the prodose, but still is helping me. i have found a few tricks that seem to help with it. accredo has been wonderful with helping, plus they keep calling and checking up. makes me feel good.

well i hope to see more in the chats sun. evening, and then for the following weeks to come. i am truly blessed to have so many friends here at phcentral, and to make new 1's along the way. thank you all.

sheri

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boy it has taken me long time to right a update.. so many things have happened, not sure where to start....

well finally broke down and purchased a home. i didn't want the family suffering anymore cuz i was afraid i couldn't handle a home. a small townhome, just wasn't cutting it for a family of five and they all just weren't happy. honestly i wasn't either, but moving, upkeep and such, scary things. i had put this off long enough since dx. in 2003. always saying let's see what happens.. ya what will happen? let's make the most of it, u never know about tomorrow.

so i had to switch internet, so i missed wed. chats. thought i might have my new internet up and running, but they hook up the new dsl not me, so i had to wait for there appt. i didn't realize this. sry folks, i apolozie for this.

i get on the interent, and what do i see, poor, poor, poor tim... poor, annie, and her family, tim's wife. i was dumbfounded to say the least. i sat her and allowed myself some tears in the midst of moving, and had to move on. will i ever forget this day? no this was the day i moved into my new house. this was the day, that the world lost a amazingly couregous young man, to a horrible senseless disease. the only good thing, i am so glad he is not suffering. he has to be breathing better now, no chest pain, no pain at all anymore. being able to smile, run free. tim will always live in our memories even tho. we never got to physically meet him, he made such a lasting effect in our family. his name became part of our family.... thank you so much annie for sharing tim with us.

well i will try to keep plugging away, my family, parents, have been awesome helping me. i couldn't have moved with out them. boy my hubby, what a amazing man. he doesn't want me doing much, so he keeps doing more. scares me tho. he is getting so wore out. we just need this doen. most is coming to a close, so it is finally looking like there is some end.

take care, see ya in chats sun. evening.....

i hope this interenet is good w/rain storms, we are suppose to be getting some all day tomorrow and then again in the evening sun, w/thunderstorms, spring is here.

sheri

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bree ty so very much

i just wanted to  write and let u all know wonderful bree sent me some ph bracelets she made. they are gorgeous. she did this out of love and just being her. i was talking to her about needing something other then rubber 1's. she and i had discussed a few things, but the overhead is very high. she made me a couple, but i told her i would take some pics. and post if any1 interested and i think poeple could special order them if they like. she really outdid herself. she is so thoughtful and caring, trying to just brighten any 1's day.it made my day so much, i was almost in tears. that is how much it meant to me. she was worried i wasn't going to like them. how could u not?

i really have to give her a big hug...... ty her again, for helping to bring us together in the cards, gift exchange.... i feel closer to alot of people since starting do this. makes it feel more homey feeling.

on the house moving in phase of my life... urgh. will  it ever end? at this point i think no, but i know it iwll just seems like no... i have been pushing so hard. my body is fighting me back. i knew it would.. i have ahorrible migriane now, haven't had 1 in a while. time to go back to the easy life. lol have to leave stuff alone for now. relax more. take advice i dish out.my ph nurse called and i go in for a echo on the 2nd of may, then ph dr. may 10th. i qam hoping all is good. haven't had 1 for quite some time. if not we will talk about adding more meds. at that time i guess. on a good note, i found out my ph sp. is now able to do iv meds. at this hosptial, they are doing them, so if and when that time comes, i don't have to switch dr.s like we thought. i am so excited about that. i was so worried. well enough rambling, plus head is killing me and i am making more mistakes then writing, oh i am on my new laptop too. it is so cool to have 1. i love it, being able to be in my chair and do this. what a wonderful husband and family i have.....

take care all, see ay in chat, wed. 1pm&9pm central time

sheri

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misc.

there is so many things i could write about.... i got a call from ph nurse. she wanted to set up my echo, so i have 1 may 2nd, then see ph sp. may 10th.. we discussed if my pressures are up or still high adding more meds. i am ok w/that. i was just worried i wold have to witch ph dr.'s they don't do iv drugs there. well i just found out they do, yippee.. now i say to myself, this is sad to be happy about this. but when your life could depend on it ir does, yipee....

we have finally started to get more settled, but my body also has been saying no more. i wasn't listening real well, my fault i know, but it has to get done. today was the 1st day in like 3 weeks i allowed myself the luxury of laying around. it didn't happen for long, got a call about son,he had massive headache, went to school and got him. i did manage to get a nap tho. he slept off some of his migraine, i was too still from mine last night. we are suppose to get rain, this brings them on for us.

i might have to take my son in for preventive meds. if they get worse. in 2003 (may) he had nisserin meningitis and as in a coma... they told us he was going to die. thank god he is with us. he is truly a miracle, all he has is a small amount of short term memory loss and migraines, diabetic brought on sooner then believe, but i am 1 too. he is healthy otherwise and plays all sports, and they are looking at football scouts for him. we are so very lucky. our girl's didn't get it, they were given antibotics right away, after exposure, so were we, but being parents, we didn't even care at that time....

i was hoping maybe my kids could be spared the mediical crap in there lives. so much for that now...i should be going and checking on my youngest outside, i am on my new laptop hubby got me. i love it. i don't hqve to run around anymore. harder to type i think, but wonderful to have....

if u would like a pic. of the bracelet bree made me, email me and i will send u a pic. there is too many to post here.

sheri

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pic.s of made ph bracelets

here is  the bracelets bree made me. i finally figured out how to post them on here. they really don't do them justice. they are gorgeous tho. they made my day when she sent them to me. i am proud to wear them. ty bree.

sheri

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i am alive

 it has been so very long i know. i am sure many are wondering..... i have talked to some in chats, but i know most that read the diaries, don't visit the chat room.

well i just got done w/surgery on my behind. yes yikes... according to the dr.s it is from all the med changes lately. i got a anal fissure. this has been going on for the last few monts and it is extremely painful. i don't feel much better yet, but they say i should in the long run. i hope they are right.

ph wise i have good and bad days still, i think the revatio has helped me more then the ventavis did. life is life, u do what u can, i don't over do anymore. that has helped me the most. i know what i can and can't do. sure took me awhile to figure that out huh?. well i wanted all to know i am still here, i will try to write more in a few days as i feel better, sitting the last few months has been real hard for me so laying down is my thing now... kinda hard to type.

nancy tyfor all the cards u send me, i love getting them.

i can't wait till we start getting the santa stuff in the mail, i love this part.

good day to all.

sheri

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way too long again

 well, it's finally me... i am not sure why it's been taking me so long in between diary entries, but other then laziness, pure and simple.

i can't even begin to catch up so i will try to give fill in a few spaces. i was having more chest pain lately, went to ph sp. had a exercise stress echo. numbers were alittle suprising actually. exercise number had gone down about 8 which whoever is reading... can be off, but i will take as a improvement. (dr. said she will give that lol) resting pressure from last time was crap. it went up 36 points. now after careful consideration, we decided to leave meds. alone for 3 months. then we are going to recheck, unless i have more issues. i have been having my usual trips to the er for water issues, migraines from it, u know the good ole ph stuff. thank god, i can pull myself out of the depressed mode when this happens yet. my hubby kinda blew up this last time at the ph dr. since she can FIX me. he said he gets fired if he doesn't perform his job. he told her how furstrated he is with this and seeing me in pain. i think he is kinda in a griefing stage and that is the anger stage. why atfer almost 4 yrs. i have had this since dec. 03 i am not sure, but it's reality so we deal with it. i just feel BAD for him. he is allowed to have his bad times too tho. it can't be easy for my family, they are my life. they do so much for me. i am not sure where i would be w/out them. they do so, so much for me. i sometimes think of people that have nobody and i commend them for all the extra's they are going thru to get by w/this disease and having to do on their own.

on a good note my hubby redid our basement in notty pine and log and i am so proud of him, he is a handy man. that has never been a surprise. when he is laid off in the winter he spends the extra time w/me and trying to get these extra things done. summer is a busy time for him as he is a foreman for a pipe crew. i am going to have to buck up in a week, cuz he is finally(mr. tough guy having his knee fixed) having his surgery on his knee that should've been done ALONG time ago. i will have to take care of him. he has a few months be4 works starts up yet so. my mom offered to come and help if i get to sick too. i just never know when i am going to have good ph days, or bad.

it's been extremely cold here in minnesota the last week or so. the windchills have been dipping in the -30 or better. those days i don't go many places. we haven't gotten much snow this season, which makes it way easier for me to get around since i don't have to lug my body around in the snow too. seriously if my kids weren't young and in school i am not sure i would live in a cold state. i would try to find a place to live that stayed around 60 or 70 yr. round if that is possible. the humidty is super tough in the summer here too, so u are limited then too. but till my kids get older....

my oldest is graduating this yr. i feel so old, but at the same time, i am eexcited i have made it to the next phase of my life. it's the same as getting another yr. older. i am here on this earth still, the wrinkles, the fat, the old gray hair, means i am here still. my son had to try out for football at a college this sat. i was too nervous to go and watch so, my hubby did it and i kept calling. how stupid i know. plus i wasn't sure where we would have to be... so we decided that would be the best. i guess he did good, but he came home sore, very sore. it will be so hard for me to let him go, to live somewhere else. this is going to be a big test for me. i think my kids would tell u we are close, i feel we are. i will miss him horribly. i am not looking forward to it, i know he needs to be a adult and this is why we had children and this day would come. it's just so scary to put them out in this world.

my mom came and spent the weekend with us. my dad was sick with strep. didn't want to be around him... yuck. i am already on my 2nd round of antibotics myself. it was nice she waited on me as only a mother can do.   lol i tried to do some stuff and so did the family, but oh no. that is why i love my mom. she is a very loving, caring, giving oh so giving u have no idea, most thoughtful woman in the whole world. she is 1 in a million. too bad she doesn't read these diaries. lol i keep them private from my family. my kids and hubby read them off and on, know ph central, but i want to be free.

i hope things start to look good for every1. i am saddened to hear about marcine. poor baby emma passed on the 19th of jan. she was 3. it is just so sad.

WILL IT EVER END?

sheri

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EYE SURGERY

 well i went in for a consult on having lasix eye surgery tues. am. since i can't sleep as usual, i thought i would share my experience with it.

like i was saying i just went in for the consult. they said even w/my ph and ALL the meds. i was a GOOD candidate for the lasix surgery. i was very happy. about 6 yrs. ago i did this, when we had the money, but i chickened out and i just justifiy spending that type of dough when the glasses and contacts didn't cost me that much. sooooo, needless to say, i didn't do it. my brother-in-law did it 1 1/2 yrs. ago he loved. i have known a few people that have had it done, they loved it, worked out great, but there is always a room for error. since i have gotten ph i am not naive in that respect anymore. i look for the worst in what can happen in a normal procedure and freak out. lol now the people i knew that had the surgery never told me the details, so i knew what the clinic said, but i always was not PREPARED FOR HAVING IT DONE THE SAME DAY. they said hey we can do it in 10 min. hubby of course knew i would chicken out again, and i wanted it done.( the o2 is making the contacts a issue now, i hate the glasses thing i am always falling asleep w/them on.) i did it, they gave me a valium and miracle happened. for me it was wonderful. it was uncomfortable thru out the day, but as long as i took a nap as they said and kept them closed they got better and better. my vision right after surgery was , i can see. i was almost blind as a bat. i clapped and wanted to jump up and down, but hey who can do that now?  this is just such s AWESOME FEELING.

now i am sure u are all going god, did she check this out w/her ph sp. or anything? yes, yes, yes. she even said if they have any question have them call me, have me paged and i will tell them, THIS HAS NOTHING TO DO W/YOUR PH. boy, oh boy, was this nice to hear. for once my ph had NOTHING to do w/something. the coumadin didn't have to be stopped, there is no bleeding with lasix. it just was meant to be.

i am some our saying why the big deal? i am not so sure, it just feels like a miracle. i have had glasses since 4th grade, i am 38 yrs. old. i don't need anything. this was instantly. barely foggy till later in the day and when my pupils weren't so dilated. just so UNREAL.

sheri

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surprised

i was so surprised by all the comments on my eye surgery.. i loved it of course, read them to hubby even.

sue, i think they can do double vision if u were serious.

nancy, i am getting old, so they told me about the reading glasses, of course they had to remind me about my age.  lol   i am figuring they should find a way soon, how to fix the close up pretty soon too.

i went in for my check-up yesterday, i already ae 20-20 vision. i was surprised myself. they were too, i guess the 1st day when u have bad eyes like me, it takes a bit. i didn't realize either that so many people have had this procedure. i know it's kinda spendy, but they are making it cheaper each yr. i am just glad my husband is so good to me. he is a very kind and giving person to me.

hope all have a great weekend.

hey annie, i look COOL now too. the shades are on top of my head too. i am sizzling.

sheri

p.s. didn't mean to make any1 cry, i just got so dang excited....

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taking care of some1

i should start this weird title by saying, my husband had routine knee surgery yesterday. he had a rip in his cartilage. it went well, but as u all know, it takes some time to heal and he needs some help. boy, oh boy, he isn't really asking for much, i realized last nite all he really does for me. i can just lay down when i need too. i dn't need to make the supper if i don't feel good enough, u know all that stuff. i can sit on my big rump. he needed ME. i am there for him, but WOW. it's been so long since i have had to do this, since i was dx. i take care of my kids, but he is there to help me.

i feel that any1 that has to do this on a daily basis w/ a disease or something like ph, anything. i commend u. i don't know how u do it day to day. taking care of little 1's even. i have so much admiration for u. i bow to u. u are very strong people.

happy valentines day. i just had to say how much i feel for thses people that do this day in and out. hats off to u. hope u all have a great day.

sheri

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sleep what is THAT?

 what is sleep? i sure wouldn't know it if it wasn't for crashing lately. books aren't interesting, interenet, nothing. i feel to shitty to go on the treadmill so ocuppying my time has been hard to say the least. hubby has been pretty tolerant, he is still layed off so this helps, but i am sure it MUST drive him NUTS. i know it does for me. i have been having the lovely water issues, that all of us have. then the posstasium goes all nuts. ya..... i can't move, my heart funks out more, skips beats. i know i am real low at this point. but going in is pointless for me. i just keep shoving in more pottasium. after the stint in icu, 18 bags later and they didn't get further then i did at home, screw it. sure the pain managment was better at the hospital, but i have pain pills here and i am doing kinda ok. i am going to try to function today... this should be a trip.

i guess that is what bends me the most out of shape, not being able to SEE the next day. should just know it will be ok, but w/ph we all know that story.

well thought i would just check in, not sleeping is making for a real grumpy person... kinda negative too. have a good day all.

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just a quick update

i am doing so poorly lately with keeping my diary up to date. this was never my intentions when i started one. so many things have been happening in my life, in fact to many to get into. health wise, i have my up and downs. had a new echo still the same results. yahoo, no improvement, but not worse. i will take that...... i had to go in, i was having these almost passing out episodes. strange, they just would come on all of sudden, different times, nothing we could link anything too. so ph is the cause, since it can happen, but i has never had them happen since i had been dx. in dec.n of 03 but go figure with lovely ph, there is no reasoning with it. i now haven't had 1 for almost 1 month again. had 2 last month. who knows......i will take none and be happy, i can feel them coming on, that is the good thing now. just kinda embarrasing when u are out. i have always struggled with weight loss as most of u know i took redux. i now have been dropping weight for no apparent reason..... nothing to stress so far, but starting to get some worries, its almost like size 18 jeans to 12 and i need a 10 now so we will see. had tons of more blood tests nothing. haven't changed any eating habits either. hmmmmmm. still taking tracleer and revatio and they have helped me very much.

my 1st child is graduating this week and that is somewhat stressful, but i am dealing with it. my sister and her 3 kids had to move in my home as she is going thru a aweful divorce that was much needed as there was mental abuse going on for years as many know the stories of this tale. i am happy for her. it is going good. the kids are doing good as they are young and love it here anyways. they all feel safe, so there is less stress on my whole family knowing they are finally safe as we couldn't really do anything be4.

we have had tons of rain as of late and they say more. i want some sun. we have enough rain. all the softball and baseball is finally done, so all that running is done, and school will be out this thurs. i enjoy when they have the summer off. my 2nd. child gets her drivers license this summer. another hurdle of me letting another child move on in another phase of their life. they grow up to fast. i had them so close in age. 1 does it, then bam, then next, i am left realing. scary sometimes for me. but i am so glad i am still around to see their progress in life.

i hope all are doing well. just thought i would let all know i am ok.

sheri

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