Welcome New Diarist Sheri

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so glad for all the support....

well i finally made the decision to do this diary. i was a little unsure as i am not real good at writing stories. i do enjoy reading all the others and what they are going thru tho, so i thought if it helps 1 other person, like it has helped me, then it was worth it.

where do u start? i was dx in dec. 2003 i went in for what i thought was a pulled muscle. i had chest pain, but no big deal i thought. they heard a slight mur-mur and wanted a echo, still no big deal, what are they going to find? nothing as far as i knew. i had the echo and within about a 1/2 hr. on a fri. at 5pm they had called and told me i had ph. didn't know what it was.... didn't know what to do. was too stupid to ask the right questions when they were on the phone w/me. they had just said not do anything and it was life threatning. a cardio would be getting ahold of me on mon. my husband was with and we just didn't really know what to do or expect. i had not been feeling the greatest, but i figured that can't be right. i got home after alerting my parents and sister's. got on the internet, and starting finding some scary stuff. little did i know this is reality at the time. i figured it was all wrong up until i had my rhc in feb 2004 when they were wheeling me in i kept saying, u can tell me this is where u made a mistake right? they thought i was crazy... i had it. pulmonary hypertension.... then we had to do all the great tests to rule out for other causes. i didn't have any. so now they call it primary. i can say that i did take redux tho. only 3 months but a death sentence it might be. i told the dr. i did this to myself then and she tried to make me feel better. nobody knew the side effects. i started out on ccb hoping i wouldn't get worse and striving to find my new normal.

how do u do that when you are married and have 3 kids? u can't do the houswork, vacumn, laundry, give the time u need. i cried the 1st 3 months. i do have to say my kids and husband and my mom have been great and have been dealing w/this way better then me. i have up and dwn days. good days and bad, no energy and days where i feel like i wanna go, but know i can't.

i have just recently been put on 02 24/7 and boy has that been a challenge. let alone a fashion statement. 3 kids running threw the house. my poor ears. i felt more for the kids having to go around w/a mom on o2 then me being seen w/it. i get the looks, but i hate for the kids and my husband having to deal w/it. more of reality w/the o2 on i think for us all. my sisters, my dad all involved. as u know u can tell people till u are blue in the face, but till they walk 1 day in your shoes(don't wish on anyone) they don't know what we are going thru. we for the most part look healthy, but aren't. i am awaiting to start tracleer. i have heard many things and am anxious to try this as i have progressed. i also just started the coumadin and now get to go 10 days instead of 2 or 3 days a week to the doc for labs.

x-mas is over, time to turn a new leaf, start the new yr. find that miracle cure for ph... that is what the future holds for us pher's. i am holding on to that for our dream. i am trying to take each day as it comes. i know some days i am not so good at it, but i am trying. i hope that is making the difference on the days i am not doing a good job of being a good person.

Thank you to all the other people w/ph who have come forward and offered there wonderful help. it means more then words can ever express.

whew i did it

sheri

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kinda a dull day (reflecting)

well today is just 1 of those days, not feeling great, but not bad..(which is good) we have been getting snow and rain here in minnesota. now we are suppose to be getting the cold, cold weather. wind chills in the -30's and such. not looking forward to that. easy enough to have the car warmed up, but when u are going to and from places w/the o2, it likes (tubing) to freeze up. then i have the issues of keeping the house entryway cleaner. all the wet... not that it isn't hard enough doing the normal stuff.

how do all the other people w/ph handle all this? i find myself wondering this all the time when i am trying to acomplish the smallest tasks. u can only have your family do so much for u. the kids can only pitch in so much, and the husband..... how much more be4 he will resent u because u can't even do the simplist things? i have read many stories of fellow pher's and their caregiver's. they just bring me to tears. i can't imagine where they find the strength and the courage? then i think well, u just have to do it. i don't not want to be here for my family, so what is the choice. u can't make this go away?it's not like we can say" ok we are done now, no more i want this to be gone," then puff it is gone. what would life be like if u could just do that?

i guess i just needed to get that out.. 1 of those moments. we have those. i will keep doing the small stuff at home that i can do till i can't stand housework anymore(lol). i am getting used to having the o2 around more. it does get easier, never thought i would be doing this but who does? my grandma f. was on o2 and she had other heath issues not relating to mine. thank god she didn't see me like this be4 she passed on. that poor thing wouldn't been able to handle that. my grandma was having a bad moment after just getting the o2 and we were at the casino, people were all around, we were sitting dwn, she was crying, i thought oh god she is sick right now. it turns out she looks at me and says i want to slit my throat, i hate this oxygen. i looked at her and really seen she was in pain from this, no joke. i told her if this was me, if that was the worst thing to happen to me, it wouldn't be a big deal. i keep playing this in my head a million times. even when the o2 is stepped on or tangled, caught or just driving me crazy. how can i complain? it might be guilt, but still is it the worst thing to happen to me? no there is worse, something happening to my family, kids, husband, parents.

i can handle this, i am going to take each day as it comes. thankful that i am here 1 more day. i used to dread getting old, but i am looking forward to it now.

thank you grandma for helping me on my o2 journey. you are still here w/me and holding my hand.

sheri

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i had good news tonite

well i had very good news tonite.. i found out i got accepted on the tracleer program. thank u god. now i get to start my meds. sometime nxt week. it has taken about a month, but it has benn worth the wait. i am hoping this is my miracle drug. i want to be the role model for tracleer. i am going to stay postive and give it a fair chance. as with any meds. they all have pro's and con's. will see w/the future holds. i had to share w/my family, i was so excited. there would've been no other way for me, i could not afford this medicine. when u pay out of pocket these meds just get to be too much.

i am going to make this a short and sweet entry tonite. i am having a good nite.

we are having bad wind chills here in minnesota. wants to make u cuddle up and stay warm. i am going to start to crochet a new blanket for my couch. brings out the grandma in me   lol. have a good nite all.

sheri

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what a wierd day

today started out very, very cold. school was called off due to the cold wind chill's. made the kids happy, they have a long weekend w/no school monday either. but i wouldn't let them out the door for fear they would get sick playing outside.

u know be4 i had ph i was protective, but i am way owrse i will admit. i am selfish i a way. i have to worry about them getting sick, but also me getting it as well and i know i can't just BOUNCE back like i used too. i really get nervous when somebody gets sick. i mean kids get sick all the time, what do u do? my kids even get a little should i use the word paranoid? it is probably something i tuned them into. ph affects the whole family down to every little thing. i read a post today on how much to tell your kids? well mine ask the questions, we try to answer them. we half the time don't even know the answers. my son doesn't want to know all of it. he said what he wants to know he will ask. i think we should be truthful, but at the same time, they are still kids and need to stay that way. why should we make they worry every minute of the day? they are all smarter then what they act like and understand more then what we think. i think we should let them lead the way and we will follow.... that believe me is a hard thing for me to say. i like to be in control.

i hope all that have ph understand that most of us are going thru or will be or have gone thru the same things. i find that i am going to post a question, but bam it is there already. it makes it feel that your really not alone in this fight. you are not crazy. you feel like crap and alot of the others do too.

well tomorrow is a new day and with it brings a new hope of feeling well. if i can only get a few things done, i will feel good, that i was able to even get something done, not nothing. i can move, that is the good part and i am here still. take each day as it comes.i love you family for all your help everyday!!!!!

sheri

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no groove today

today is 1 of those days, can't just seem to get in the groove of things. i want to get stuff done, but just don't seem to have the energy. not really tired, just slow and weak.

i talked to my atty. today about my date w/the ssd judge. he prepared me for a long wait. yahoo, boy am i excited. NOT. like we don't have enough to worry about w/our ph? they(ssd) have to make it harder for us, deny us what is coming our way anyway's. now i know their are dishonest people in this world, we all do, but comeon, who wants to have this and be diabled, not to play w/ their kids, have worries if your husband is going to leave cuz he can't stand this disease and all it brings early in life already? i know i would rather work, then go thru all that. it is just so maddening. i just want to throw something at them.  lol

we all deal w/this sometime or another and each case is totally different i know. some get ssd on the 1st try, some get on the 2nd and yes some in front of the judge(hope me). well at least they have to back pay me. i am not starting over so, they can not have to pay me. i know as a employer, i would'nt hire me. o2 and constantly not feeling good from day, to day. how dependable is that? not to mention dr. appt.s or tests.

well i am at least hoping the tracleer helps w/the tiredness and weakness i am having lately. i do try to do things, then get tired to easy, so i am really hoping for this to work. if not i will try something else. i will stop at nothing, even tho i am not entertaining the thoughts of having a iv perm. in. at nothing for the sake of me. i want to see my kids grow up, i want to be here for grandchildren, to let them jump on my kids beds when they aren't looking(lol). grow old w/hubby and sit on those old rocking chairs on the porch. i will do it.

i had smoked 5 or 6 cigs. a day be4 o2. i knew i would have to quit some day. when i got the o2 i was done, just like that. now i would like 1(more a stress thing). but i did that w/out anything i can do this. my mom said i am stubborn, wow i think she is right(lol). in fact i know she is............

tomorrow will be a great day right? i will say this hope all is well for all. i am going to watch my nephew tomorrow he has been sick. so i volunteered. my sister has school. they said if i had the flu shot, which i did, i shouldn't get sick. that is the strain. we will see, kinda scary, things have changed for me know, w/getting sick. take care all.

life is precious as i am yelling....lol

sheri

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went to the er last nite...

well we went to the er last nite. thank god, it wasn't for me. my sister had the worst migraine yet. they doped her up and we got home in the wee hours of the morning. i have been having a hard time catching up or getting back into it since then.

i NORMALLY would've just brought her myself, but w/ph now, it took my longer to get ready. had to make sure the o2 was ready. had extra tank with, the car warmed up, husband was up and dressed too. i know, if something were to happen i can't pick her or push her even in the wheel chair. how pathetic is that? so, the poor thing is in pain waiting for her slow sister now. i was in a hurry, i am sure it seemed like hours to her. i used to get migraines, i know what she is going thru. they are the worst. i would not wish them on my worst enemy. when i found out i had ph it got tricker for them to treat my migraines, but they did find 1 drug i can have for preventive and it has worked wonders. i do have back up shots at my home so, i don't have to go in, and the migraines don't get real bad. they are dhe injections, and tardol injections. it usually works pretty good. i have been really lucky and had my last 1 in oct. last yr. when i had to use a shot. so i am extremely happy.

the ph affects so many aspects of your life, migraines was even another 1 for me, and something as simple as taking my sister in for 1 by myself, is now a problem. recovering is another thing alltogether. wow is all i can say. i learn something new everyday. i have new struggles everyday. my son asked why i am so tired all the time? he knows i have ph, but by the time they get home from school and i have done a few things i am wiped, and after last nite.... getting thur to them to understand, is always going to be a struggle i think. the kids see u have a good day, plus i try to hide it when i am not. i am not as good as doing that anymore. i don't have the energy for it. then a few bad days, so it just doesn't register. heck, i have a hard time understanding and we expect our loved 1's to understand?

i am kinda getting impatient waiting on my tracleer. there was no mail on mon. so i know that slows things down. so when my dr. get's it, i finally get to start. maybe i am putting to much faith in this med., but u have to hope. i know if this 1 doesn't work, there are more. i just know i am doing the ladder as i see it. u have to climb up that ladder while trying all the different meds. to see which 1's work for u. that is progress as i see it.

so i will close and hope all is well for tonite and keep in my mind that their are ladders for everything in our life.

sheri

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snow finally here

well the snow storm they have been talking about us getting, finally came. the real 1st one for us this winter. i hate the snow unless it is x-mas. especially, cuz of the o2 tubing getting so cold. it is harder to breath also. so needless to say i did not go anywhere today. i did have my nails done yesterday(which i kept putting off) cuz i knew it was now or never. that is still the 1 thing i do is have my nails done once a month. i won't give it up. my pulm. sp. hates putting the oximeter on they (nails) are so long, they usually have to get the one that hooks to my ear. too bad for them, i used to feel quilty, but not anymore, i give up enough w/this disease. i am NOT giving up my NAILS. wierd i know, that should mean so much to me, but it does. little things do.

i woke w/ a headache today and thought oh great a migraine, i sure panic when i think i am getting a migraine, i have been doing so good lately, i don't know why i would either. i have shots i can do, heavy duty ones too. maybe all the snow and i knew the roads would be horrible, and if i had to go in....... who even knows what i could've been thinking????

i was in chat and had some new people in there tonite. funny, the same ??? come up. will the crying stop? i cried for 3 months straight when i 1st found out, do u work? no i am not able too. do u see a ph spec.? yes i do mine is also a cardio. are u on the transplant list? no, if u are where? what meds are u currently on? what are the side effects? we all are going thru the same thing. it is all stages... we have been there. it may sound like we are saying it to pacify u, but it is honestly true.

when i got worse i went thru the process all over again. i think that happens to all of us. we have different opinions, side effects. no 2 ph's are the same. we are all effected differently, but we go thur the same emotions. we need each other to have  a should to just cry on sometimes or other times to just ask a question. can be big questions, or littles ones that maybe to others are nothing, but to us are really a major issue. i asked for help tonite on a 02 issue and cheryl helped me. she is a wonderful and knowledgeable person. i couldn't get a straight answer out of my o2 company. i know we are not dr.'s or nurses and should always consult them 1st. but heck, friends are friends and that is what we make here at ph central.

FRIENDS

sheri

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why worry?

 well i am not sure why i doubt myself somtimes? my husband has been wanting to read my diary and i finally let him. i knew there would be no embrassment, so i still am unsure why this was a issue for me? i am sure a counselor could tell me... lol

well i haven't had any major headaches, this is good. the weekend has been real mellow, which is what we wanted. i actually went out and took my son to work, and tried to stay out doors for just a little while. it was nice and sunny, not real cold. we did ger some snow, just felt good. when u don't feel well, u can stay indoors for a longtime. thank god nobody is sick with the flu at my house. so many people have had it.

i did learn something new today after ready the diary's. bollody nose remedy. my youngest gets them non stop, we have had her in countless times. they can't do anything. just keep adding air, making sure it's not dry in here. i will have to try the vinegar trick.

well all i am going to try to get to sleep earlier. i also like to play euchre w/my best friend in colorado on line. take care all.

sheri

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just another day

 today was just another day thankfully.. still here. nothing worse, but nothing better. i feel like i am at a stand still. i need to move forward, i know this feeling is because i am supoose to start my tracleer on thurs. the accredo pharmacy called me today and was filling me in on all the side effects, dosages, when i will be getting them sent to the house etc. the blood work i will have to keep up on. it goes to my ph dr. 1st and they will and have already drilled this into my head so, i won't forget. i know it is important. i am sure they do it so u realize to do it.

i did explain we had wanted to make a trip to colorado in feb. we were looking at the end of feb. but we might go in the beginning of march now. i want to make sure i am stable and not having any complications on my meds. be4 we leave. we will only go for a week,but it sure wouldn't be very fun then. my husband is looking forward to it, more then anybody i think. for some reason, traveling is a big deal for him. staying close to home is good to me and doing things around here. i am happy when i am not pressured to always have to go far away to have fun, but he likes to go. so being married as long as we have i will be the comprimizer in this area.

we are suppose to have nice weather tomorrow, maybe i will try to get outside tomorrow, go in the garage, look around for a bit. there is really nothing for me to do otherwise. the kids will be in school. i need to find a few things anyways. we watched a movie tonite. the village. very good movie. thought i would share that w/ya. i am getting to be quite a movie expert since getting the pph.. something good to come of it?  lol not in my book.. i read less. i wonder why that is? i will fall asleep i think while i am reading. could be the trouble.

well all have a wonderful nite and uneventful nite.

smiles

sheri

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got a few things done today........

 i got a few things done today. that sure felt good. i started my entry, then my sister came over. the poor thing can not quit coughing. they(family) have been having that ugly flu bug hitting their family in many different ways. she got the cold one i believe. i am doing laundry so i am up anyways. i still have just a hard time sleeping at nite.

well i have come to a few decisions tonite, i have been thinking pretty hard about this. this is not something i FROWN upon, it's just a hate adding another med. to the long list. i am going to go in to the dr. again. i am going to insist on a antidepressant this time. they say i am not depressed. i feel for the most part i am not, but man do i have these mood swings. i hate them. i think they are just getting worse. i worry none stop and i don't want too. i am not sure that will help, but i want to feel a little more carefree like a used to. i seem to be more uptight., more w/drawn. i just want to cover all my bases and make sure i don't push my loved 1's away and sometimes i feel like i am doing that, cuz i can handle this. i don't want them to have to shoulder the worries. i am a strong person, but i think i need to hand some of it away. i just want to make sure i am not screwing up my kids. i have tried so hard to make sure i am raising them right, i don't want this to make a mess of everythign we have shared and learned together. being a mom was the most important thing to me. it is but being sick is now, i know that is what happens, for now i have to deal w/that till i can be like i call a even keal. i am not there yet. i hope it is soon, if not i will have to find something else to do about that. i am always learning and finding new ways and things i need to try. i was trying to hold off till i started my tracleer and was stablized on it, but i don't think i can wait that long. my right eye has even been twitching alot lately,stress i am thinking. which is not good for ph, so i am going to make the choice. i find that it doesn't make me less of a person either, i just wanted to wait till i needed to if i did. i know alot of people are and w/this kind of illness it is common. but you never know i could be one that doesn't need too. i had got over the 1st hurdle. i do think sometimes, it gets harder each new hurdle. the smoking was my stress reliever too. i know u all think shame on u, but that is the worst thing i ever did in my life. so sue me..... i miss it too. maybe that is why i am getting more depressed too. since i haven't been for almost 2 months. i have major problems w/not having them. no gum, no patches, no meds. cold turkey. not the easiest either. i was a calmer person when i smoked, but o2 and that does not mix.

i do have to chuckle tho, i have seen many a old aged folks(no offense ) chimney just a going and the o2 a going. they can and will blow there faces up. i have seen it happen. 2nd to 3 rd degree burns. i know people that have to have a neb. to just have a smoke. but i look at this, are u going to change them? no, u can't if they don't want too. make it as safe for them and u as possible. at least have them move away from o2 and take it off for a smoke.. they are not going to change, and us harping is not going to change that. they have lived most of their lives, and they have accepted that. they want to be happy. we may not understand it, but i chose to let them make their own choices unless it puts them in danger.(not smoking)

well i will get off my soap box for now. i sometimes get in the preaching mood sry folks. its just we always want to change people. we can't. this is why we like that person. why would we want to mold them into us. i don't always even like myself alot of the times.

ok,ok, maybe it's cuz i am doing laundry and i hate doing it. maybe cuz i hate going to the dr. maybe i am just fed up tonite. it is my bad day. can u tell? i will get back to my good self. i promise.

the ugly side of me...

sheri

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running around all day...

 i woke up and now i am up at 1 am not a good thing. i made sure i didn't even nap all day. i have sooooooo much running. well for a person w/ph to do today, that i wanted to make sure i wasn't tired. i have to go to the county in the am, then i u got it FINALLY go in and pick up my tracleer, it is in and have all my good blood tests at the heart center. in the early afternoon. then when i am done i will hit rush hr. traffic. oh how lovely. my kids have early release today too and i won't even be home. which sucks. i go in the my primary on fri. at 11 am also. i need something to give me not so many mood swings, but then i will hopefully not have all the side effects of the tracleer either, so i didn't really want to start anything else yet. maybe i will just have to try something else for the anxiety instead of xanax, till i know what i will do on the tracleer? there has to be more i know there is. they just tell me to take xanax. well if i sit here and keep rambling on about nothing u all will think i am a dah head and i am not just tired, and want to be able to sleep and have a normal life.

i need to get out of my funk i am in. back in the groove of things. it is hard to get back in again. plus i am not sure how i got out of it? well i will figure it out sooner or later.

nite all

sheri

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busy few days...

 i have been hoping i could write much sooner, but it just hasn't been possible. there have been way too many things happening, which is why i really need to write.

i got my tracleer on thurs. and started it and boy i am sry to say, but i feel like crap, i am feeling like i am going to puke most of the day. i know they say this will go away, but man. plus, just tired too. i am anyways, so that really doesn't help much. i know i have to give it a chance and it is probably going to get worse be4 it gets better if it does, but yuck.

then to make matters worse i am driving home from getting these meds. and a car in front of me hits the center median. now me being a spaz about being close to drivers thank god i wasn't. i would have been toast, they flipped 5 times right in front of me and landed in my lane. now i am stopped and they are, it is on top, no movement mind you, and i am watching. i was a emt be4 all of this and a firefighter. i am wanting to run right over, but knowing my body doesn't do well and knowing i can't w/the o2 on. seemed like forever, wasn't of course, and i had to hop out, nobody was even stopping. i thought what if there is a baby or small child in there? i couldn't not do even w/my health. 1st time i have been in that spot. it was hard, plus i didn't feel real good the rest of the day.

now, the day just gets worse, we get a phone call, that my father-in-law is being transfered from his local hospital down to our big trama for a heart attack. good god. we go there, find out he is going to have a triple by pass. all of this is a total surprise to all of us. so now he is in icu waiting for mon. am then they are going to do. they wanted to get him some meds. on board, etc. we think cuz of the weekend they are waiting. but i look at this 65 yr old man, think i am being selfish all the nursed of course look at me on o2 wondering what in the world. i feel horrible cuz i know it;s painful and scary, but damnit, it's fixable. they have something to fix this . they have nothing to fix me. i would trade shoes. am i a bad person? my in laws just don't get it? my 1 sister in law does, but the rest i doubt it.my 1 brother in law does. he always askes and checks on me, but the rest don't. i don't volunteer info. tho either. why waste the energy? my husband thinks they know, but they just don't care. which is probably true. we look like a wierd bunch together i know. people think omg. don't blame them. we have lots of issues, that will never get worked out in that family anyways. it runs way too deep. my own husband(family)has connection, but they don't w/me or our kids really. that is the sad part, and they have had many, many chances. i wish no harm to anybody, and i will always support my husband. we decided to make the choice and bring the kids there to see grandpa be4 the sugery tomorrow evening. they are old enough, but none of them like hospitals. does anybody? but they voice there opinion now.

in may 2003 my oldest and only boy frank was airlifted to regions hosptial in minnestoa from wisconsin. he had quit breathing 1 time in wis. and they weren't sure what was going on. we all thought the flu. then they weren't sure? MENINGTIS

he was airlifted and my parents lived close dwn there and met the chopper. by the time we got there a 2 hr. drive.we went fast)he was on life support and they told us he was going to die. i lost it, from then on it was the worst nightmare in my intire life. he had nisserian meningtits. he was a miracle, he pulled thru. he has some short term memory issues and that is it. he had other issues right after, but they have gone away, double vision, migraines,severe itching. this hosptial is a hard place for all of us to walk into. this is where my son was. we have not been there since we left. i hope he can handle going back there. that part is the part he is not too thrilled about. that yr. wasn't the greatest for us, then in dec.03 i got dx w/this pph. but we just keep on going. we are made out of tough stuff i keep telling people.

ok i had to get that out, trip dwn memory lane, because of what happened and where we have been. when people are not good to me i still try to be good to them, i see what comes around goes around....

sheri

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been awhile

 we have been with my father in law these last few days. he ended up having quad by pass surgery. he is doing great they say. he is just having some anixety issues i think if nobody is around so we are kinda taking turns.  benn kinda tough on me, but have survived. my sleeping has been screwed up, and i am using alot of the regular o2 not, my concentrator. i like my cont. cuz of the humdifier on it. things should be settleing dwn. we are going to take the kids up tonite.

so far so good on the tracleer, other then sick feeling, and water weight. not bad. they put me on water pills and pottsaium. i have my inr done thrus. curious to see what it is. then my liver too. i am tired, but what with all the excitement the last few days, who knows what it is from?

kinda been getting a headache too. not real bad, but dull aching 1's. they say that can happen. hope they don't get worse. well haven't slept yet and it's early am. we just got back from hosptial, so i am going to hit the sack.

i do wish i could get my disease fixed tho.

sheri

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 wow i haven't been on for awhile. it has so busy w/my father-in-law having surgery. plus on top of it all i am just not liking the pukey feeling from the tracleer. i say it's from this med. cuz i didn't have it till i started it.now they started me on water pill's, yahoo. another pill to the mix. my dr. called to tell me all my liver tests are good. which i am very grateful to hear. i asked what we are going to do about the sick feeling. they want me to wait till tues. they think the water pill might filter the med.? out thru the liver and that is why i am feeling that way. i hate always adding new meds. that is all my life involves now. meds., meds.

enough feeling sry for me. i feel for the people that aren't here. i am at least here. i can feel my kids,(even when they are not listening, fighting, lol), see them love them.

love my family, still try to stay connected to my husband that i do love dearly. this just has to wear on him. we talk about it, but he says he is ok, sometimes he isn't and he lets me know, but i do know he trys. i am not sure if i could be in that spot. i would be there for him no matter what. i do know that. i love him w/ all my heart still. he does drive me crazy, but that is normal. i drive him crazy all the time too. kinda a love hate thing going.  lol

well i just feel so pukey , i would love to sit here and write i am in 1 of those moods. but ish. i know i need to lie down and i need to start listening to what my body is telling me. i plan on being here for along time. i am the mom and wife of this family. no other yet....

sheri

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 hi all,

finally back from my 1st vacation... colorado.. it was a LONG drive, but i think the kids enjoyed. the o2 was at my friends early, no worries there. apria gave me no headaches which i was thankful for. i did have a little more trouble in the colorado air, but i knew we were only going to be there for the week. the weather sure beats here(minnesota) anyday. we came back to snow, and very cold. yuck. didn't miss that a bit. didn't care for all the mountains. they scare me w/the driving. it always seemed so windy on the roads. i am just to pickey is all. we did just fine, but i do like being home.

the best part, was being able to share this experience w/my husband and kids(we had some trying moments.. lol). seeing my best friend in person not on the phone all the time. my friend connie was very open and accomadting to all my needs, cuz of the o2 and having all 5 of us. i am sure she is recuperating.

i did have i noticed, more coumadin issues.. i never have had to have a pressure dressing yet. i did there, inr no.'s were still low and screwed up cuz of the tracleer. i had to even have 1 on for 4 hrs. and when i took off it was still bleeding. it finally stopped. it was just little things. i didn't rest like i should have, didn't really push bad either. just why waste when u are out there.... we have some awesome pic's. i am ashamed to say i took my o2 off for the pics tho. how lame of me, but too bad.. not something i wanted the kids to remember for the 1st vacation we ever took.

i did things and seen things i wouldn't have otherwise and got home safe and sound, ready to recover. life sure didn't stop when we left, it went faster,a nd now we have to make up for time since we got home. is that possible? boy...that is what is good about going away.. the problems go away for awhile. lol. i would rather that(sometimes) then not be on this earth. i am going to watch my neice in the am.(have neighbor for backup) she is 3 in case. i just never know, what i will be able to handle. my nephew has a dr. appt. so early day, i better try to get to bed. i need blood draw tomorrow too. so much going on i tell ya.

hope e1 had a good valentines.......

i did w/my family....

sheri

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i have wanted to get on and write so many times in the last few days, but something or not feeling good always seems to come up. i just started the new dosage of tracleer 125mg 2xa day and it is kicking my butt a bit. i had just gotten used to it a week ago at the other dosage. then we have the inr issue. boy getting that fixed again after going on this is a huge problem. so i am running for checks 2 to 3 times a week. what a pain in the butt. i just wish they would get the checks for us at home. i am not a idiot, i can handle this. all the running makes a person crabby. your health consumes you.

i contacted our local senator office today to try to speed up my judge date, for ssd. i hope it helps, the are sending me the paperwork they need after explaining what has been going on. i have kinda been a little rebel lately, not wearing the 02 like i am suppose too. i think i am testing myself to see if the tracleer is doing anything. my husband says he see's a difference sometimes. but i am good at faking too.i am tired of being tired and sick. i want to feel well again. maybe summer will help. i know it takes alwhile for the meds to kick in too. if they are going to work. they might not be for me. i might have to just try something else. was just hoping that wouldn't be the case. i find out my liver nxt week again. will see what that brings too. that might be the deciding factor anyways. i read all that we go thru and know we pretty much share the same things, but it still hurts to know we all are suffering in our own ways. each day is a struggle, and it seems we just have more and more. maybe nxt week will be the good week....

i am hoping so.....

take care all... peace out......

sheri

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snow again

 going to get snow again,,, kinda fits my mood. no energy. i am dead. i hate this. it has to be the increase of the tracleer. i was like this be4, but i had a little bit more. i am also having way more chest pain. i am going to ride it out and see what happens. i go for my liver test this week. might take a while to know since i just started on the new dose. i try to push myself sometimes, but not much anymore, just becuase i know what i can't do. i was just hoping i could do more? that miracle would happen.. lol my family is just sick and tired of having to do everything for me. i did do dishes and then i did, the kitchen floor, sweept, and mopped. dishwasher isn't hard, just load and turn on, but i always wash some instead. then wipe off counter-tops. the laundry is my biggest problem. my kids have to help for it all. they hate it. but u want clean clothes, too bad. they just don't get or understand the sick mother thing still. they figure i should be able to do this stuff, and yes sometimes i can, but then i am deathly sick after i do a few loads. is it worth it? clean clothes for my kids yes, but they can also do too. it's trying to explain all this to them and get them to understand. i am thinking we are going to have to experience the counseling phase. maybe they can do a better job of it. i have just run out of energy and idea's. i just want us to be a normal family. i am thinking, i am kinda getting blamed from the kids, they can't do alot of things cuz of me. which some is true. money is tight cuz of meds. me not being able to work and no ssd yet. still fighting it. i don't want the hate. i want understanding. is that too much to ask? maybe i expect to much out of them, they are kids.we just need to have to learn to mesh w/this disease and it is not working so far. not bad like i know it can be. thank god., but not real good either. any suggestions i will always take. i am at my wits end. i don't want to feel sick, but i can't help it, so i am forced to feel this way and i need to figure a system out. if i could afford to, i would hire a lady to do laundry and clean. then that would help take some of the stress off. just thinking outloud. don't have the money to do that at all, so that is not a option. meds. are more important. see that is another thing i hate, they are the center of our universe always. do we have enough for mom's meds. urggh. ok better go and play some games. getting stressed, cuz i feel like shit.

nite all. sorry for the depressive state.

sheri

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good intentions

 i always read the diaries and figure i will write, but then never get around to writing mine. why is it that i don't just take the time? i think part of my problem is that i don't think it is interesting enough for people. i have to quit that and move on. this is for me and no one else. having said that(hope it helps), my week has pretty much sucked.

this new dose of tracleer as i have mentioned earlier is really kicking my butt. my liver tests are good, but the water weight oh my god. they are trying to get this under control. i feel like the pillsbury dough boy. lips are swollen, face, hands, feet, u name it. i feel terrible. they upped my lasix, added something i take a 1/2 hr. be4 the lasix to make it work better tomorrow that i have to pick up. my life is all about meds. my sp. nurse knows i hate to complain, she asked if i was having trouble breathing, well hell ya, u have all that water floating around in your body and tell me... she said see i know these things tell me. like i told her today i could really complain everyday of my life if i wanted about how shitty i really feel. but i do need to start letting them know more when i am not feeling well. i will be4 it gets bad, don't get me wrong. i am just not a real big on the what if thing. i call when i know we have a issue. then say what are we going to do about it.

starting having a bad headache the last few days again. i am sure it is the water weight. not the migraines starting again. still very anoying. just another to add to the long list of things. i have kinda been trying to not use the o2 lately, to see maybe if the tracleer is doing anything. i don't think my wish of going off the o2 is going to happen, or not so soon. i think i am just not a patient person, and it is way too soon. i keep telling myself, give it time. i should tape it. i still tend to overdo it too. that sure doesn't help. when it is nice out i want to be out. 34-40 out nice. not real nice, but warmer. o2 still doesn't like that cold.

well i should be getting to bed and i still need to yes i hate to say this clean my bathroom...

my parents are coming tomorrow and i still worry about what they think.. how pathetic i know. i will be running around with my head cut off in the morning making sure all is good be4 they get here. i will learn someday. have a great weekend all......

sheri

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can't sleep

can't sleep, nobody is online, they at least have enough brains to sleep. i just have thses stupid nights where this still happens. i will be up all nite. urgh. makes me angry. part of it is that i am swollen to the gills. i could swim right now. i feel like sausage fingers. can't even type right. turned up the o2(per dr.), guess that is normal, feel like u can't breathe. i am going to have to try again. i hate to have to take my xanax i have my parents coming in the am.

god, this sucks. head aches, swollen body, just check me in somewhere. my skin is like drying up from all the lasix's i am assuming.(or o2?) but then i put lotion, then wow zit city. i just can't win lately. i need some good luck.

i did call my senator. they sent a privacy paper to sign. they are going to look into my ssd denial. i am waiting to go be4 the judge. of course, no date has been set yet. i sent it back in, hopefully, they will just say they made a mistake and all will be well. can it be that easy? do i need to lose everything 1st? be bankrupty? paying for the meds. is killing us. well if i get booted off the tracleer program, then i will be off, that is 1 med. i can't and won't pay for. if it means dieing then.......... there is nothing i can do. the system is killing us for not being able to help pay for these meds. they are way too expensive.  i am curious to find out when people really start to use the inhaled drug and the cost. maybe that is a option dwn the rd. it should be used soon.

enough of my blipping, seems all i do. i need to feel better and get back on track. i know there has to be better days still out there. too many bad days. i take 1 day at a time and it seems to help, but lately 1 hr at a time is more like it. just kinda frustrating as fellow ph'ers know. these diaries i am finding are awesome for the person that needs to vent. i find myself not taking out on my husband as much anymore. i try not to even discuss w/him each day ph. i want normal things instead. we know it's there and we talk but i don't want it consuming us. we are still a family and i try to do and be a family.

i wish i could write like some in the dairies all neat and orderly with a purpose. i was never good at that. maybe this will also help not be afraid or shy that aren't as good to also just write. i love reading other's no matter, how they are writing. i hate when they are having bad times, but u share a commom bond. u can relate. well will try this again, go to bed, my hubby will come looking for me to make sure i am alright pretty soon if i don't. live long all.

sheri

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 i am sryi haven't been on recently. had internet issues(no money)... the story of my life lately. just our cell's for now. i miss reading the diaries so much. i had to go and borrow, lol i have had also so many other issues trying to work on w/meds. it just never ends. diabetic now. why not. just what i needed too. my tracleer seemes to be doing good so far. i am hopeful still. i just want out of the o2 bad still.

i had kinda of a emtional thing going and still do cuz of my sister's not being realn supportive. my dad wasn't either, but he and i know on same page i think. just couldn't take it no more, i exploded. i will write more, when not laptop, i am so full of things to get down on paper, but i hate this laptop. don't have much time. i hope all goes well for all, and plz take care of youreselves every1.

have a great week...

sheri

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i have to admit i read the diary enteries everyday, but i just haven't been getting mine done latley since i have my internet back. not sure why? lazyness? i enjoy reading how every1 is doing. i wish all the good health for all. i hate to hear when people are having rough times, but i know this is par for the course. it still hurts to know. i feel for each person. it doesn't matter that we don't even know who anybody is...

like so many i have had my up's and dwn's. i am not sure if this tracleer is helping or not yet. in some ways i think it has. then i still have bad chest pain, that hasn't been fixed or should i say helped, since there is no cure. some days i think i could go w/out o2, then i know i can't. it is just such a jo-jo. they sweeling being on the tracleer has the been the toughest for me. plus i still have the issue of not being able to sleep. really this is not new, but i sure would like to sleep. not just when i can't move anymore. i am trying to not make this a complaining diary for me, so i am going to close for now, but i wish happiness and wellness for all.

sheri

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 i finally am writing a positive thing tonite. upbeat. i got a call from my senator's office. i had wrote to them on advice from all of u fellow pher's. they looked into my ssd case and mind u i am in the going be4 the judge stage and they said it would take me 12-15 months. that was 2 months ago. i have a date now set for may 11. i am so excited and scared at the same time. my atty w/access is going to be there. the senator office said they couldn't help me orginally unless i was in foreclosure, eviction, or worsened. i told them i had worsed look at my records and they must have. if i was the other 2 like i told them i would be living on the streets still waiting. it is too long of a process. we know the process isn't right. now i am praying, hoping for a i should say the right outcome. me entitled to my ssd, i qualify and am entilted to it. maybe they will see that now. it is too bad we have to go thru all of this tho. life is just so crazy sometimes.

i wish there was a way for me to help people. if i was rich i could make a foundation for ph. help those that were waiting for there ssd or just needed help. boy lol there are tons of things i would like to do. not even greedy things how about that.. i would just like to buy survival guides to have in my dr.'s office for them to hand out for patients that just get dx. i sure could've used 1. i ended up buying my own, which wasn't the end of the world, but by then i had most of my tests.

i am waiting for the ph bracelets to be made again. i am going to buy a bunch, pass them around here. i am getting the ?'s about my purple 1, thxs to trudy. my mom wears her's and i saved 1 just in case mine? safety net. i did find a red 1 w/hearts all over it. from the americsn heart assocaiton that i bought and wear also. that helps make people aware too, since it has the hearts on it. the red helps to.

well as u can tell no gripping tonite so i am going to leave on this good note. goodnite all.

take care.

sheri

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i am so happy to be reading that people are finally getting what they deserve.. it is about time. maybe things will look up for all of us in our fight for ssd. hopefully, social security is realizing what a deadly, horrible, depabilting disease this really is. that would be a wonderful acomplishment. then it would be worth the wait we have had to put up with i think. now plz pray for me. i am not really the praying type, but i have been doing alot of it for so many people lately as alot seem to need this recently. we need more up days. we are kinda all having to many dwn days.

like i said earlier, the lottery would really help here  lol. some of the problems we face might be helped w/a foundation set up for us struggling. those are just my dreams. i still need to have some. i still dream they will also find a cure for this disease soon too. i am happy to be reading that birthdays are still coming and being celebrated. wonderful milestones they are. truly blessings. happy bd jenn L.

i am really happy for u jenn and your family, maybe now u can have a normal, new normal life going again. take care.

never give up hope.

sheri

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things have been real slow moving around here. i have been trying to be more of a mom? doing laundry, cleaning. the normal things. didn't really work. now i am sick, i have a bad cold. i need to learn to pace myself still yet. i just feel bad for my family when they have to do all the work.

well i am on my 3rd helio's. the o2 company is bringing it wed. they are either not holding air, or they leak. go figure. i just want something, that is small i can depend on and that will work. i really can't even breathe thru my nose right now, so i am not sure it would sense it anyways. i am using it straight from the source right now. i did call my ph sp. to see if i can turn it up sense i feel like i can't cathc my breath. it is the cold and i know it is from the coughing. i already started my antibotics. hope they work soon. it started so soon overnite. it caught me off guard. i wasn't prepared. at the 1st sign i am suppose to start a antibotic i have presc. for anytime. well, i was dumb. i won't be next time. i will do it and have it ready. my ph sp. said to turn up to 3 and see how that goes. i am on 2 anyways. i still might have to go in, but i am not looking forward to it. not that any1 really is.

this board has been so silent lately, i hope everything is alright. i am real nervous for my hearing on the 11th of may for my ssd. i just want this to be it and be done w/it and move on. this is my new life, and i need the money, it is real, approve me and let's move on. try to have some normalcy. well i have total rambling tonite. i have tons of thoughts and they are organized as usual, so i am going to close. i hope all have a good and healthy week.

take care

sheri

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