I wish someone would explain that to my ex. I have had physical problems for a great majority of the time we were together and he never took me seriously. <snip> One day he said I gotta leave this place before I throw up and I just wanted to cry because I have done all I physically could do.
My Crohn's got so bad in 1998 that I dropped to 72 pounds and was so weak I had to be carried. The first doctor I saw (a G.I. specialist) told me I was sick cause I smoked cigarettes. *sigh* I was so angry I went directly across the street from his office to the hospital clinic the resident doctors were that I used as my GP docs. I was on the state medical care at that point. I asked if they could slip me in to see one and they saw my soon to be hubby standing there with me in his arms, they had me in a room very quickly.
It took that resident, who knew nothing about Crohn's, to just be willing to listen to me and be willing to run a few tests. Something no other doc would do thru the first 40 years of my life due to having no insurance and not enough cash to pay for tests, not to mention they didn't believe me anyway, I looked fine, they always ended up asking me if I'd like them to refer me to a nice shrink they knew. :(
The barium gulp, iodine push CT Scan found the Crohn's and as I prepared for surgery with the surgeon they referred me to, my resident GP started studying up on Crohn's.
We don't have a car, so DR (hubby's nick) rides his bicycle as I ride mine when I'm able to get around. Needless to say, back then I could do nothing more than lay on the couch, in bed, or sit up at my computer. The net became my way out to the rest of the world, I only saw real life by looking out my window. By the time he worked all night and rode the bike 6 miles to get there and back, he was too tired to do housework and I wasn't able to. I don't even think rats would have wanted to live in our apartment. LOL. We had a path to get thru it basically. I was surrounded by all the things I needed the hours he was gone, so I didn't have to try to get up to get them and risk falling and hurting myself. I only got up to go potty and to go to the kitchen, the rest of my time I was at my puter or lying on the couch.
While I've never been a neat freak, I was totally embarassed by the inside of our place. I know exactly what you are feeling. I then came to the understanding that I was NOT going to make myself sicker, to please anyone else. They could either choose to ignore the mess made by having needed things around me or they didn't have to come inside. I didn't care which, I just didn't want to hear a word about it from them until they had walked in my shoes for awhile. (Well, by then I had the wheelchair, maybe I should say rolled on my wheels. LOL.)
You ex makes ME sick. What I would do is to not let him inside the house again. On the days he comes to get the kids, have them ready to walk out the door as soon as he arrives. If they aren't quite ready, he can wait on the porch until they are. That way his poor tummy won't get upset again by having to come inside your house, unless he comes in and cleans it for you. While that IS the thing he *should* be doing, I don't expect him to ever offer.
As you know I've had many more than one husband. They ALL were the same. They said I was lazy, I used 'I hurt' as an excuse to get out of doing things and when I'd double over and hit the floor from the gut pain I was faking it. It's very tempting some days to get copies of my medical files of the Crohn's Dx and send them a copy. I probably never will, but it sure is fun to think about. Like your's though, I wouldn't ever hear apology one for all the nasty things said and done to me by them I'm sure. One of them heard me say my gut was hurting one day and said 'I'll show you pain' and then proceeded to. What fun, then my gut and other body parts hurt when he was done.
Real friends who love you I learned will become apparent as time goes on. They are the ones that do try to understand that immuno diseases are an internal illness, not one that shows on the outside of the body in most cases, until the disease is at it's worst if even then. There is really nothing on the outside of our bodies that our immune systems can think don't belong, how silly would that be? LOL. It gets confused on our different body parts internally and thinks they are bad and goes on the attack, just like it's supposed to do to real bad things inside us. Just in our case it's attacking parts that aren't really bad and it ends up destroying our good parts. My favorite saying around here as I head towards the bathroom is: "I hate my guts ... and they hate me!"
Every time I eat, if I'm flaring, my immune system thinks that the food moving thru my guts is something bad and it attacks my bowels, mainly right at the end of the small where it connects to the large. Over time the scar tissue builds up from all the times of inflammation deep into the bowel walls and if the nasty meds don't stop the flare, the only choice left is to have surgery to remove the bad section of bowel. I've lost a little over a foot of my small bowel in 1999. I am going thru more tests now and may need to have more taken out. Time will tell on that one.
With MS your immune system thinks different body parts are bad and goes on the attack just like mine does. It can't be seen by others, but boy can we sure feel it. I wish I knew how to get your ex to understand how it all works, but I doubt he reads here to see what I've written and I don't feel he sounds like the type that would take the time to actually research the disease to see what it's doing to you in there.
Well sweet lady, welcome to the world of all things immuno. We are a special group of people and do our best to support each other.
At any rate, this was a good deal of time after she had been diagnosed with MS, and she has continued perking along, hunting, drinking, bein a wild woman, and selling insurance where my wife works. A very active woman, which, as I understand it, is an important thing to be when one has MS. An amazing gal. I think her husband has a hard time keeping up with her. She has sort of "defied" her situation and told Life, screw you! You ain't stopping me from gettin all of the best!" And she keeps on keepin' on.
Anyway, thought you might get a kick out of that stow-ree... :)
JL
Well, so what? Obviously MS is affecting Free a LOT differently. I don't see how your little stowree is supposed to help Free feel better.
WB- I think Johnny shared his stow ey to give her vision of not giving up and when all comes at her to not back down, but FIght..Its the attitude he is trying to convey here...heck..I know in a health challenged situation I would want someone to encourage me to fight..how about you?
What I can't figure out is how the woman carries on being the drunk that she is. But apparently even that is available. No doubt the heavy drinking will eventually get to her though...
I agree, keep your negative ex and his hurtful comments OUTSIDE of YOUR environment. Just because he has rights to the kids doesn't mean he has rights to come inside your house!!
I also understand your frustration about going from being a neat freak to a "not-so-neat-freak". I was positively obsessive about my house, and still cannot concentrate if there is too much mess around me. But, as I've taken on more things (house ownership, yardwork, school, multiple jobs) and as my health has taken a slight turn (cannot seem to keep my iron levels up so I'm always tired) I find I have neither the time, the strength, nor the will to worry about it. Yes, I have been positively embarrassed to have someone "pop" by and see the state of my home a few times. But I know I'm doing the best that I can. My home is not filthy, and it isn't unhealthy, but it is usually cluttery and certainly not spotless!! (I have a teenager and pets in the house, so sue me)
So, here's the place I've gotten to in my mind to deal with it... anyone who comes into my home, knowing what is going on in my life right now, and thinks, "boy, she's a lousy housekeeper" just doesn't get what the really important things in life are all about. My kid is not judging me. My friends are not judging me. So why should I be judging me so hard? I kinda think God understands, you know?
My Crohn's got so bad in 1998 that I dropped to 72 pounds and was so weak I had to be carried. The first doctor I saw (a G.I. specialist) told me I was sick cause I smoked cigarettes. *sigh* I was so angry I went directly across the street from his office to the hospital clinic the resident doctors were that I used as my GP docs. I was on the state medical care at that point. I asked if they could slip me in to see one and they saw my soon to be hubby standing there with me in his arms, they had me in a room very quickly.
It took that resident, who knew nothing about Crohn's, to just be willing to listen to me and be willing to run a few tests. Something no other doc would do thru the first 40 years of my life due to having no insurance and not enough cash to pay for tests, not to mention they didn't believe me anyway, I looked fine, they always ended up asking me if I'd like them to refer me to a nice shrink they knew. :(
The barium gulp, iodine push CT Scan found the Crohn's and as I prepared for surgery with the surgeon they referred me to, my resident GP started studying up on Crohn's.
We don't have a car, so DR (hubby's nick) rides his bicycle as I ride mine when I'm able to get around. Needless to say, back then I could do nothing more than lay on the couch, in bed, or sit up at my computer. The net became my way out to the rest of the world, I only saw real life by looking out my window. By the time he worked all night and rode the bike 6 miles to get there and back, he was too tired to do housework and I wasn't able to. I don't even think rats would have wanted to live in our apartment. LOL. We had a path to get thru it basically. I was surrounded by all the things I needed the hours he was gone, so I didn't have to try to get up to get them and risk falling and hurting myself. I only got up to go potty and to go to the kitchen, the rest of my time I was at my puter or lying on the couch.
While I've never been a neat freak, I was totally embarassed by the inside of our place. I know exactly what you are feeling. I then came to the understanding that I was NOT going to make myself sicker, to please anyone else. They could either choose to ignore the mess made by having needed things around me or they didn't have to come inside. I didn't care which, I just didn't want to hear a word about it from them until they had walked in my shoes for awhile. (Well, by then I had the wheelchair, maybe I should say rolled on my wheels. LOL.)
You ex makes ME sick. What I would do is to not let him inside the house again. On the days he comes to get the kids, have them ready to walk out the door as soon as he arrives. If they aren't quite ready, he can wait on the porch until they are. That way his poor tummy won't get upset again by having to come inside your house, unless he comes in and cleans it for you. While that IS the thing he *should* be doing, I don't expect him to ever offer.
As you know I've had many more than one husband. They ALL were the same. They said I was lazy, I used 'I hurt' as an excuse to get out of doing things and when I'd double over and hit the floor from the gut pain I was faking it. It's very tempting some days to get copies of my medical files of the Crohn's Dx and send them a copy. I probably never will, but it sure is fun to think about. Like your's though, I wouldn't ever hear apology one for all the nasty things said and done to me by them I'm sure. One of them heard me say my gut was hurting one day and said 'I'll show you pain' and then proceeded to. What fun, then my gut and other body parts hurt when he was done.
Real friends who love you I learned will become apparent as time goes on. They are the ones that do try to understand that immuno diseases are an internal illness, not one that shows on the outside of the body in most cases, until the disease is at it's worst if even then. There is really nothing on the outside of our bodies that our immune systems can think don't belong, how silly would that be? LOL. It gets confused on our different body parts internally and thinks they are bad and goes on the attack, just like it's supposed to do to real bad things inside us. Just in our case it's attacking parts that aren't really bad and it ends up destroying our good parts. My favorite saying around here as I head towards the bathroom is: "I hate my guts ... and they hate me!"
Every time I eat, if I'm flaring, my immune system thinks that the food moving thru my guts is something bad and it attacks my bowels, mainly right at the end of the small where it connects to the large. Over time the scar tissue builds up from all the times of inflammation deep into the bowel walls and if the nasty meds don't stop the flare, the only choice left is to have surgery to remove the bad section of bowel. I've lost a little over a foot of my small bowel in 1999. I am going thru more tests now and may need to have more taken out. Time will tell on that one.
With MS your immune system thinks different body parts are bad and goes on the attack just like mine does. It can't be seen by others, but boy can we sure feel it. I wish I knew how to get your ex to understand how it all works, but I doubt he reads here to see what I've written and I don't feel he sounds like the type that would take the time to actually research the disease to see what it's doing to you in there.
Well sweet lady, welcome to the world of all things immuno. We are a special group of people and do our best to support each other.
Dear (((((((Bikerbabe)))))),
I am sorry that I have never had much of any opportunity to get to know you better...I hope that changes; although I wanted
you to know how very impressed I am with your heart of love and your courage, and strength! You are what I call a real undauntable Warrior!
I am keeping You and Free both continually in my heart and prayers! Please remember one thing about me; I am very Idealistic and I do absolutely Believe that Miracles are very Realistic!
Highway, I do get so embarassed about my house and tend to make excuses when people come over, but I know that my "friends" do judge me because I have caught the backlash of the gossip. It's not filthy dirty I do clean the places we eat a couple times a week and have the kids on a chore schedule so that can do a half a$$ed job on the rest but the problem is that most of the time it's the 3 of them against me. Sara is almost 15 and you would think she would be more responsible but she is a little lazy, Scotty is 10, and all boy, he has to feel sorry for me before he will help and I won't play the pity role. So he just sits in his room and does nothing until his chore is done. Bethany is 7 and she does a great job for someone who's 7 just not my standard. So I go nuts because my house isn't what I want. And the kitchen floor needs to be done daily. It seems to be covered in some kind of goop or mud every day. I just don't have the energy after a day at work, squeezing in school, and homework to make mopping a daily task. And the kid's bedrooms well right now I just close their doors. If they don't care about their personal belongings then why should I go overboard. Except it's hard to get into their rooms to put their clothes away, and I feel like putting clean clothing in there room is only a waste as the clothes end up on the floor (clean clothes) as they rip them out of their closets and drawers to decide what to wear. It's bitterly frustrating!!! argh!!!! lol
BikerBabe - Thanks for sharing your experiences with us, that took courage to come out here and tell your story. You must be an amazing woman to keep going as you do and you are a beautiful woman. Sorry you have had husbands who didn't understand the seriousness of your illness. Makes me think that it's probably better to not entertain a relationship with a man from here on out as I may just fall into similar accusations when truth is I just want to collapse with exhaustion. I will continue to pray for you. Hang in there and let me know if there is anything I can ever do for you.
Free... if your friends are judging you in their own heads, shame on them, but to go even farther and SAY something to someone else about it... sorry, but TIME FOR NEW FRIENDS!!!
Seriously, I would rather be peaceful all by myself than surrounded by back-biting, unhelpful acquaintances. Do they even know what's going on with you? Geez, what's wrong with those folks? Even if they don't know what's going on with you, shouldn't their response be to ask if everything is alright rather than jump to judgement?
You deserve far better than that!!
By the way... my kid (15yrs) has no concept of putting things away... he'll do it if I point to something and say "put that away" but otherwise, whatever it is (dirty sock, clean sock, food wrapper, empty soda can, dirty dish, cd, ipod charger, old school papers, photographs, dorito crumbs...) could sit there for a month (oh, who am I kidding, it could sit there forever) and it wouldn't bother him in the slightest. I know this is just a phase (granted, a really long phase that will last until his mid-twenties) so rather than freaking out about the state of his room, my rule is that it is not allowed to spill over to the rest of the house, and when I tell him to bring me his dishes, empty his trash, gather his dirty clothes, or vacuum, he either does it without procrastination and a lot of attitude or he starts losing privileges, starting with his allowance. So far, that has worked pretty well.
WB- I think Johnny shared his stow ey to give her vision of not giving up and when all comes at her to not back down, but FIght..Its the attitude he is trying to convey here...heck..I know in a health challenged situation I would want someone to encourage me to fight..how about you?
Hey likeaneagle,
I didn't mean to come on so strong, but it sounded insensitive. At least the woman who gets drunk all the time and has all that energy has a husband. Free is a full time mom who works a full time job and goes to school full time. I don't have MS, but I double d*** guarantee I wouldn't be cleaning my house after a day like that. When would she start? Depending on how far away her classes are, I'd say 9pm would be the earliest...and she has homework and she has to get herself and her children ready for the next day. How much more can one person fight? It sounds like she already runs circles around most people and that's not factoring in the disease.
Well Highway I will say this in my little girl's defense. She is actually very good at doing her own laundry and keeping at least that nice. Now to get her to put the same care into the rest of the house, and maybe throw in a load or two of laundry that's not hers. lol
WB it's nice to have someone understand. It's a little tough keeping up with it when I was healthy but now that I am not up to par it's even tougher. It looks like I will have a bit of a break next week and hopefully I will have a little extra energy to get some stuff done. We shall see. Work doesn't have a new contract for me yet. They want to keep me in KC which adds 3 hours to my day. So far they haven't found a new contract for me so I will only have to make that trek once this week and work from home the rest of the week. That is if there is any work for me to do. So a little lighter on the stress next week. And maybe time and energy to boot. Yeah!!!!
Got some health food store stuff today hoping it helps with the MS. The clerks looked it up and got me what was in the system and ordered me a specialty item. I am not waiting for the treatments. They will come but in the meantime I will do what I can.
Well Highway I will say this in my little girl's defense. She is actually very good at doing her own laundry and keeping at least that nice. Now to get her to put the same care into the rest of the house, and maybe throw in a load or two of laundry that's not hers. lol
WB it's nice to have someone understand. It's a little tough keeping up with it when I was healthy but now that I am not up to par it's even tougher. It looks like I will have a bit of a break next week and hopefully I will have a little extra energy to get some stuff done. We shall see. Work doesn't have a new contract for me yet. They want to keep me in KC which adds 3 hours to my day. So far they haven't found a new contract for me so I will only have to make that trek once this week and work from home the rest of the week. That is if there is any work for me to do. So a little lighter on the stress next week. And maybe time and energy to boot. Yeah!!!!
Got some health food store stuff today hoping it helps with the MS. The clerks looked it up and got me what was in the system and ordered me a specialty item. I am not waiting for the treatments. They will come but in the meantime I will do what I can.
You have my empathy and warm wishes... I know only by having a next door neighbor with MS (which means I know a little, but not a whole lot about it).
No doubt simplifying your life/lifestyle will be a good thing. I also hope you've got what everyone with major stressors in their lives needs... a good support network of loving friends/loved ones.
Highway, I do get so embarassed about my house and tend to make excuses when people come over, but I know that my "friends" do judge me because I have caught the backlash of the gossip. It's not filthy dirty I do clean the places we eat a couple times a week and have the kids on a chore schedule so that can do a half a$$ed job on the rest but the problem is that most of the time it's the 3 of them against me
That is more than sad! How can 2 people chat so coldly about what you cannot accomplish! Instead of that - - they should put their heads together in prayer for you and your family! I'm so sorry that's the "ilk" you live around.
Kinda reminds me of that scripture where the begger continues to stay firmly planted on his behind and call out" There's a lion in the street" rather than take some affirmative action to warn others or somehow help to minimize the problem.
If they don't think your house is up to snuff, perhaps they could stop hollering"there's a lion in the street" long enough to lend a helping hand.
I've learned that some people (none in here obviously) get into a mindset similar to the one when someone dies. They really have no idea what to say, what to do and would love to just avoid the entire situation and have everything back as it was. They know that won't and can't happen, so they will use the most convenient excuse to justify to themselves or the 'group' of friends that they have a reason that is good enough to not come around and visit so often.
Heck, that's real easy with people like us that use the little strength we have just to get thru our day and do the absolutely necessary things. Housework, thank you cards, online things, parties, whatever it is you used to do always, just isn't a priority any more and would take away strength needed for you to have some quality of life. There's such a vast different between not being able to do things and not wanting to do them. They have never been in that position in their life, so it never crosses their little minds that you aren't the same anymore and pitching in and helping would mean more than they would ever know. They just find an excuse that suits them, so they feel no guilt in spending more time away from you than they used to.
I've had people choose not to want to be around me because of the pain meds I take. In real life I rarely tell anyone what I take, except the other pain patients at the clinic as we talk about what meds work or don't work for us. The second people hear Methadone they assume I'm a drug addict and say so via asking how much and what kind of drug I was abusing, before I was put on the Methadone. Sheesh. I again tell them I'm a pain patient, I've never abused drugs and they still don't understand many times. They don't get it that while Methadone is used to help heroin and other type opiate addicts detox off them if they can't do it on their own, it's also been found to be an excellent drug for people with intractable pain. Most pain patients feel it's the best, I agree with them. I feel no 'high' like all the other pain meds give you, I don't get cravings for 'more' as a lot of pain patients end up doing over time because the drug is made so you don't have that happen and should I ever lose my medicare, I could afford to buy a month's worth of Methadone for around 40 to 50 bucks probably for the amount I take. A month's worth of not even half the strength of Oxycontin or Morphine I'd need would cost 400 bucks at least. But ya know, I don't feel I should have to explain all that to anyone, if they are really my friend they would just be thrilled I was able to get the medicare and get the meds to get rid of the pain which enables me to eat and put weight on. I can say that in here because those that know me from chat WERE thrilled when I got the pain gone and would give updates on my weight over the months. I haven't told anyone in real life much, just say yeah if they do notice I've put on 25 pounds over the past 7 or 8 months.
Free, don't let any of 'em get to ya and make you sad. I learned the stress of it all isn't worth it. Give them a little more time if they do come visit without you asking them to and maybe the light will dawn soon. I sure hope it does, there are days when there's nothing like having a friend you can go to and whine your heart out, knowing he or she realizes it's healthy for you to do that ... when you have someone like him/her whom you trust enough to open up to and are assured it won't be taken wrong. It's good for you and should be an honor to them to be thought of in such a wonderful way by you.
If these friends don't come around, as others have already said .. it's time to find new friends. I know it sounds scary, but new friends can be fun as you get to know each other over time and talk about things new to both of you that your old friends would have no interest in hearing about again for the 10th time. :)
thanks for your insight and explanation. I guess I never thought about it like that. People do back away when they are in an uncomfortable situation and don't know how to handle it. I guess that is human nature. I'm glad you have folks here you can confide in... I guess most of us here understand being isolated in a crowd and the need to vent sometimes! I'm glad you are doing better. I hope Freeatlast can find some relief as well.
Great post. Thanks for sharing your insight. I never thought about it from your perspective. I have found that when dealing with people who are dealing with tremendous physical pain or a death in the family, etc., that even taking their hand and saying something along the lines of 'I don't know what to say to you' at least indicates that you're there for them if they need to talk or vent. At least most of the people I've dealt with seemed to be encouraged by it.
thanks for your insight and explanation. I guess I never thought about it like that. People do back away when they are in an uncomfortable situation and don't know how to handle it. I guess that is human nature. I'm glad you have folks here you can confide in... I guess most of us here understand being isolated in a crowd and the need to vent sometimes! I'm glad you are doing better. I hope Freeatlast can find some relief as well.
BikerBabe,
Great post. Thanks for sharing your insight. I never thought about it from your perspective. I have found that when dealing with people who are dealing with tremendous physical pain or a death in the family, etc., that even taking their hand and saying something along the lines of 'I don't know what to say to you' at least indicates that you're there for them if they need to talk or vent. At least most of the people I've dealt with seemed to be encouraged by it.
You both explained it every well. It is human nature to back away and be timid of the things we don't understand and that scary feeling we know there is nothing we can do to 'fix it'. We women are worse than the men most of the time too, due to our mothering instinct which tells us to 'fix it'.
When there's a death or someone I know gets ill, I usually come up with some one liner that says something like 'There are no words, so I'm not gonna waste your time or mine trying to come up with any. Let's just sit here together and 'be'. We can talk about whatever comes to mind or not say a word and just get peaceful together, it's your choice'.
When I first met my next door neighbor who has Cerebral Palsy and uses a power chair, out on the walkway, I said to him 'well darn, I finally get strong enough to get out of my chair and NOW I meet you .. shoot .. well, one day I'll dig mine out of the closet and we'll hit the parking lot for some chair races, sound cool?' He about fell out of his chair laughing at me. (He's 50 yrs old like I almost am, the mind pic alone was great.) Since that time we've come up with a better idea. We're gonna get a long rope, put his chair in front of mine (his is powered, mine is manual) and he will hold one end of the rope and I'll hold the other. Then he will give me a 'tow' down the street so we can see how many people we can get laughing as they drive by. We live on a very busy street too, so that makes it all the more fun to plan out. We will try to get it on video too so I can post it online.
I've also point blank told him that when he's out of his chair and hobbling around his apartment, he reminds me of me last year when I couldn't hardly walk due to muscle weakness. We have fun comparing notes of the 'best' places we've dropped like a rock or gotten stuck in our chairs. He's told me since we met that he has so much fun with me because I'm not afraid to talk about it and can make the fun jokes that gets us thru every day. I've always been the type who'd rather laugh than cry, so I try to find the humor in every situation.
Another day, a couple weeks ago I went over to the store with him and on the way there I just hopped on the back end of his chair, grabbed on around his headrest and went for a ride. Man, that was fun, but we came to a pretty bumpy part of the sidewalk and so I hopped off at that point. Didn't want to take a chance of tipping us over! We'll find a better area of sidewalk and do it again one day, we had a riot and everyone driving home from work that came by us and noticed gave us a laugh and a wave. :)
Gotta end this for now. I was supposed to ride up to the bike store yesterday to get the light put on my bike so I can start riding now after dark. Once it hits over 100 degrees daytime here, we try not to go out till after the sun goes down and it cools off some. Instead I spent the day watching my manager remove my dead fridge that I woke up to find out of here and get a new one put in. Then by the time I got all the food moved into the new one I was pretty tired. I sat down and after a few minutes my computer's alarm went off saying it was overheating. I spent a half hour under my desk cleaning the dust out of all the fans, off the boards, etc and then when I booted back up, the vid card decided it didn't want to work right. After removing it, putting it back in, getting new drivers for it and the monitor and making some adjustments, I'm back to normal. By then it was too late to go to the store though. So I'm up early on just a few hours sleep to make sure I'm there shortly after they open this morning to get my light put on. Gotta stay safe out there on the road and after dark without good lights and good flashing LCD lights totally around the bike, you won't be seen and take a huge chance of getting run over. I saved up 150 bucks over the past few months so I would be able to do this once the weather got hot.
So many great posts here, I just don't have time to respond to them all. BB you are a trooper and you have a lot of courage to come out here and lay all you have been through out for everyone to see.
In the last 24 hours I have had my two oldest sit with me and cry. It broke my heart that they were so upset about me having a disease. My oldest says it's just not fair that one person should have so much sickness in their life and although it may not be fair I told her it was the way things are. I think she got really effected by it when her shopping spree for her NY trip this summer wore me out to the point I couldn't continue with her and had to let she and her little friend run ahead and when I caught up I would see what they selected pay the bill and sit down again. I guess she really wanted me in there with her. That's when she realized I wasn't as strong as I used to be, every August when we did our back to school shopping we made it an all day event, this time I couldn't even last 4 hours. So that night she bawled.
Last night it was my son's turn. When I asked him why he was crying he said he had a cold and a really runny nose. You know those little boys. Can't admit they are crying. Then he asked me if I was going to get to see him grow up. I told him absolutely and with the meds today I would probably get to meet my grandkids. He felt better after that and told me he prayed to God that when his family memebers died it would be in their sleep. Heavy prayer for a 10 year old but he's been through a lot with me and watched me beat the odds everytime. He's got the experience in life that this type of prayer would seem natural to him. I pulled him in hugged him and explained to him that I would see him grow up and become a man.
As the evening progressed we talked about how long we wanted to live. He said he definitely didn't want to live to be 90. I told him me neither. I would just be a human raisin and that he and his sisters would say when is that woman going to die. All the while I would be saying, "Sonny, I just want to see my great grand kids grow up." He cracked up and dozed off to sleep. I guess he got what he needed to feel secure again.
My youngest hasn't dealt with it so well, she's just acting out and misbehaving worse than ever. Makes it hard to be understanding in that situation. Somehow I will get to discuss this with her. At 7 it's a tall order to handle and when I had the tumor in my heart she was too young to understand how serious it really was.
Dear Free, Sorry to hear about you having MS and your ex acting like an arse-hole. I will pray for your healing(at least mental and spiritual). You and BB have shown great courage about your illnesses. Hope both of you have near-by relatives to help you out. God's love to you. Thomas
thanks TLB, you are sweet and the prayers are much needed. I started taking cod liver oil with A and D to straighten out my immune system and the health food store ordered something called Padma for me. It's supposed to be another remedy and I am looking into the gluconutrients. I joined an MS forum/group and I am trying to take in all the information I can to find cures for this disease, or at least prolong the inevitable.
Recommended Posts
Top Posters In This Topic
20
7
11
9
Popular Days
May 13
55
May 14
36
May 15
16
May 12
12
Top Posters In This Topic
FreeAtLast 20 posts
J0nny Ling0 7 posts
dmiller 11 posts
doojable 9 posts
Popular Days
May 13 2007
55 posts
May 14 2007
36 posts
May 15 2007
16 posts
May 12 2007
12 posts
BikerBabe
My Crohn's got so bad in 1998 that I dropped to 72 pounds and was so weak I had to be carried. The first doctor I saw (a G.I. specialist) told me I was sick cause I smoked cigarettes. *sigh* I was so angry I went directly across the street from his office to the hospital clinic the resident doctors were that I used as my GP docs. I was on the state medical care at that point. I asked if they could slip me in to see one and they saw my soon to be hubby standing there with me in his arms, they had me in a room very quickly.
It took that resident, who knew nothing about Crohn's, to just be willing to listen to me and be willing to run a few tests. Something no other doc would do thru the first 40 years of my life due to having no insurance and not enough cash to pay for tests, not to mention they didn't believe me anyway, I looked fine, they always ended up asking me if I'd like them to refer me to a nice shrink they knew. :(
The barium gulp, iodine push CT Scan found the Crohn's and as I prepared for surgery with the surgeon they referred me to, my resident GP started studying up on Crohn's.
We don't have a car, so DR (hubby's nick) rides his bicycle as I ride mine when I'm able to get around. Needless to say, back then I could do nothing more than lay on the couch, in bed, or sit up at my computer. The net became my way out to the rest of the world, I only saw real life by looking out my window. By the time he worked all night and rode the bike 6 miles to get there and back, he was too tired to do housework and I wasn't able to. I don't even think rats would have wanted to live in our apartment. LOL. We had a path to get thru it basically. I was surrounded by all the things I needed the hours he was gone, so I didn't have to try to get up to get them and risk falling and hurting myself. I only got up to go potty and to go to the kitchen, the rest of my time I was at my puter or lying on the couch.
While I've never been a neat freak, I was totally embarassed by the inside of our place. I know exactly what you are feeling. I then came to the understanding that I was NOT going to make myself sicker, to please anyone else. They could either choose to ignore the mess made by having needed things around me or they didn't have to come inside. I didn't care which, I just didn't want to hear a word about it from them until they had walked in my shoes for awhile. (Well, by then I had the wheelchair, maybe I should say rolled on my wheels. LOL.)
You ex makes ME sick. What I would do is to not let him inside the house again. On the days he comes to get the kids, have them ready to walk out the door as soon as he arrives. If they aren't quite ready, he can wait on the porch until they are. That way his poor tummy won't get upset again by having to come inside your house, unless he comes in and cleans it for you. While that IS the thing he *should* be doing, I don't expect him to ever offer.
As you know I've had many more than one husband. They ALL were the same. They said I was lazy, I used 'I hurt' as an excuse to get out of doing things and when I'd double over and hit the floor from the gut pain I was faking it. It's very tempting some days to get copies of my medical files of the Crohn's Dx and send them a copy. I probably never will, but it sure is fun to think about. Like your's though, I wouldn't ever hear apology one for all the nasty things said and done to me by them I'm sure. One of them heard me say my gut was hurting one day and said 'I'll show you pain' and then proceeded to. What fun, then my gut and other body parts hurt when he was done.
Real friends who love you I learned will become apparent as time goes on. They are the ones that do try to understand that immuno diseases are an internal illness, not one that shows on the outside of the body in most cases, until the disease is at it's worst if even then. There is really nothing on the outside of our bodies that our immune systems can think don't belong, how silly would that be? LOL. It gets confused on our different body parts internally and thinks they are bad and goes on the attack, just like it's supposed to do to real bad things inside us. Just in our case it's attacking parts that aren't really bad and it ends up destroying our good parts. My favorite saying around here as I head towards the bathroom is: "I hate my guts ... and they hate me!"
Every time I eat, if I'm flaring, my immune system thinks that the food moving thru my guts is something bad and it attacks my bowels, mainly right at the end of the small where it connects to the large. Over time the scar tissue builds up from all the times of inflammation deep into the bowel walls and if the nasty meds don't stop the flare, the only choice left is to have surgery to remove the bad section of bowel. I've lost a little over a foot of my small bowel in 1999. I am going thru more tests now and may need to have more taken out. Time will tell on that one.
With MS your immune system thinks different body parts are bad and goes on the attack just like mine does. It can't be seen by others, but boy can we sure feel it. I wish I knew how to get your ex to understand how it all works, but I doubt he reads here to see what I've written and I don't feel he sounds like the type that would take the time to actually research the disease to see what it's doing to you in there.
Well sweet lady, welcome to the world of all things immuno. We are a special group of people and do our best to support each other.
Link to comment
Share on other sites
Cynic
FreeAtLast,
I think your attitude in the face of adversity has been to this point rather amazing. May God sustain you and grant you his grace and mercy.
Link to comment
Share on other sites
waterbuffalo
Well, so what? Obviously MS is affecting Free a LOT differently. I don't see how your little stowree is supposed to help Free feel better.
Link to comment
Share on other sites
likeaneagle
WB- I think Johnny shared his stow ey to give her vision of not giving up and when all comes at her to not back down, but FIght..Its the attitude he is trying to convey here...heck..I know in a health challenged situation I would want someone to encourage me to fight..how about you?
Link to comment
Share on other sites
J0nny Ling0
What I can't figure out is how the woman carries on being the drunk that she is. But apparently even that is available. No doubt the heavy drinking will eventually get to her though...
Edited by Jonny LingoLink to comment
Share on other sites
TheHighWay
Free,
I agree, keep your negative ex and his hurtful comments OUTSIDE of YOUR environment. Just because he has rights to the kids doesn't mean he has rights to come inside your house!!
I also understand your frustration about going from being a neat freak to a "not-so-neat-freak". I was positively obsessive about my house, and still cannot concentrate if there is too much mess around me. But, as I've taken on more things (house ownership, yardwork, school, multiple jobs) and as my health has taken a slight turn (cannot seem to keep my iron levels up so I'm always tired) I find I have neither the time, the strength, nor the will to worry about it. Yes, I have been positively embarrassed to have someone "pop" by and see the state of my home a few times. But I know I'm doing the best that I can. My home is not filthy, and it isn't unhealthy, but it is usually cluttery and certainly not spotless!! (I have a teenager and pets in the house, so sue me)
So, here's the place I've gotten to in my mind to deal with it... anyone who comes into my home, knowing what is going on in my life right now, and thinks, "boy, she's a lousy housekeeper" just doesn't get what the really important things in life are all about. My kid is not judging me. My friends are not judging me. So why should I be judging me so hard? I kinda think God understands, you know?
THW
Link to comment
Share on other sites
RainbowsGirl
Dear (((((((Bikerbabe)))))),
I am sorry that I have never had much of any opportunity to get to know you better...I hope that changes; although I wanted
you to know how very impressed I am with your heart of love and your courage, and strength! You are what I call a real undauntable Warrior!
I am keeping You and Free both continually in my heart and prayers! Please remember one thing about me; I am very Idealistic and I do absolutely Believe that Miracles are very Realistic!
If there is anything I can ever do please PM me!
I Love You Bikebabe, RainbowsGirl
Link to comment
Share on other sites
FreeAtLast
Highway, I do get so embarassed about my house and tend to make excuses when people come over, but I know that my "friends" do judge me because I have caught the backlash of the gossip. It's not filthy dirty I do clean the places we eat a couple times a week and have the kids on a chore schedule so that can do a half a$$ed job on the rest but the problem is that most of the time it's the 3 of them against me. Sara is almost 15 and you would think she would be more responsible but she is a little lazy, Scotty is 10, and all boy, he has to feel sorry for me before he will help and I won't play the pity role. So he just sits in his room and does nothing until his chore is done. Bethany is 7 and she does a great job for someone who's 7 just not my standard. So I go nuts because my house isn't what I want. And the kitchen floor needs to be done daily. It seems to be covered in some kind of goop or mud every day. I just don't have the energy after a day at work, squeezing in school, and homework to make mopping a daily task. And the kid's bedrooms well right now I just close their doors. If they don't care about their personal belongings then why should I go overboard. Except it's hard to get into their rooms to put their clothes away, and I feel like putting clean clothing in there room is only a waste as the clothes end up on the floor (clean clothes) as they rip them out of their closets and drawers to decide what to wear. It's bitterly frustrating!!! argh!!!! lol
BikerBabe - Thanks for sharing your experiences with us, that took courage to come out here and tell your story. You must be an amazing woman to keep going as you do and you are a beautiful woman. Sorry you have had husbands who didn't understand the seriousness of your illness. Makes me think that it's probably better to not entertain a relationship with a man from here on out as I may just fall into similar accusations when truth is I just want to collapse with exhaustion. I will continue to pray for you. Hang in there and let me know if there is anything I can ever do for you.
Link to comment
Share on other sites
TheHighWay
Free... if your friends are judging you in their own heads, shame on them, but to go even farther and SAY something to someone else about it... sorry, but TIME FOR NEW FRIENDS!!!
Seriously, I would rather be peaceful all by myself than surrounded by back-biting, unhelpful acquaintances. Do they even know what's going on with you? Geez, what's wrong with those folks? Even if they don't know what's going on with you, shouldn't their response be to ask if everything is alright rather than jump to judgement?
You deserve far better than that!!
By the way... my kid (15yrs) has no concept of putting things away... he'll do it if I point to something and say "put that away" but otherwise, whatever it is (dirty sock, clean sock, food wrapper, empty soda can, dirty dish, cd, ipod charger, old school papers, photographs, dorito crumbs...) could sit there for a month (oh, who am I kidding, it could sit there forever) and it wouldn't bother him in the slightest. I know this is just a phase (granted, a really long phase that will last until his mid-twenties) so rather than freaking out about the state of his room, my rule is that it is not allowed to spill over to the rest of the house, and when I tell him to bring me his dishes, empty his trash, gather his dirty clothes, or vacuum, he either does it without procrastination and a lot of attitude or he starts losing privileges, starting with his allowance. So far, that has worked pretty well.
Edited by TheHighWayLink to comment
Share on other sites
waterbuffalo
Hey likeaneagle,
I didn't mean to come on so strong, but it sounded insensitive. At least the woman who gets drunk all the time and has all that energy has a husband. Free is a full time mom who works a full time job and goes to school full time. I don't have MS, but I double d*** guarantee I wouldn't be cleaning my house after a day like that. When would she start? Depending on how far away her classes are, I'd say 9pm would be the earliest...and she has homework and she has to get herself and her children ready for the next day. How much more can one person fight? It sounds like she already runs circles around most people and that's not factoring in the disease.
Link to comment
Share on other sites
likeaneagle
I wouldnt be cleaning either..thanks wb
Link to comment
Share on other sites
FreeAtLast
Well Highway I will say this in my little girl's defense. She is actually very good at doing her own laundry and keeping at least that nice. Now to get her to put the same care into the rest of the house, and maybe throw in a load or two of laundry that's not hers. lol
WB it's nice to have someone understand. It's a little tough keeping up with it when I was healthy but now that I am not up to par it's even tougher. It looks like I will have a bit of a break next week and hopefully I will have a little extra energy to get some stuff done. We shall see. Work doesn't have a new contract for me yet. They want to keep me in KC which adds 3 hours to my day. So far they haven't found a new contract for me so I will only have to make that trek once this week and work from home the rest of the week. That is if there is any work for me to do. So a little lighter on the stress next week. And maybe time and energy to boot. Yeah!!!!
Got some health food store stuff today hoping it helps with the MS. The clerks looked it up and got me what was in the system and ordered me a specialty item. I am not waiting for the treatments. They will come but in the meantime I will do what I can.
Link to comment
Share on other sites
Rocky
You have my empathy and warm wishes... I know only by having a next door neighbor with MS (which means I know a little, but not a whole lot about it).
No doubt simplifying your life/lifestyle will be a good thing. I also hope you've got what everyone with major stressors in their lives needs... a good support network of loving friends/loved ones.
Link to comment
Share on other sites
krys
That is more than sad! How can 2 people chat so coldly about what you cannot accomplish! Instead of that - - they should put their heads together in prayer for you and your family! I'm so sorry that's the "ilk" you live around.
Link to comment
Share on other sites
waysider
Kinda reminds me of that scripture where the begger continues to stay firmly planted on his behind and call out" There's a lion in the street" rather than take some affirmative action to warn others or somehow help to minimize the problem.
If they don't think your house is up to snuff, perhaps they could stop hollering"there's a lion in the street" long enough to lend a helping hand.
Just a thought.
Link to comment
Share on other sites
coolchef
damn if i have a friend who is not up to cleang,chopping wood,weeding the garden or what ever i jump up and help
and the favor is always returned
that's what friends are for
i had a buddy come up and mow my lawn the other day and another one put the lawn furniture out for me cause they knew my back was out
god bless friends
if i was around free i would mop your floor every day!
Link to comment
Share on other sites
TheHighWay
My thoughts exactly, coolchef...
I hope Free suddenly finds herself surrounded by such good people as I have had the priviledge to call "friend" and "neighbor"!!
Link to comment
Share on other sites
BikerBabe
I've learned that some people (none in here obviously) get into a mindset similar to the one when someone dies. They really have no idea what to say, what to do and would love to just avoid the entire situation and have everything back as it was. They know that won't and can't happen, so they will use the most convenient excuse to justify to themselves or the 'group' of friends that they have a reason that is good enough to not come around and visit so often.
Heck, that's real easy with people like us that use the little strength we have just to get thru our day and do the absolutely necessary things. Housework, thank you cards, online things, parties, whatever it is you used to do always, just isn't a priority any more and would take away strength needed for you to have some quality of life. There's such a vast different between not being able to do things and not wanting to do them. They have never been in that position in their life, so it never crosses their little minds that you aren't the same anymore and pitching in and helping would mean more than they would ever know. They just find an excuse that suits them, so they feel no guilt in spending more time away from you than they used to.
I've had people choose not to want to be around me because of the pain meds I take. In real life I rarely tell anyone what I take, except the other pain patients at the clinic as we talk about what meds work or don't work for us. The second people hear Methadone they assume I'm a drug addict and say so via asking how much and what kind of drug I was abusing, before I was put on the Methadone. Sheesh. I again tell them I'm a pain patient, I've never abused drugs and they still don't understand many times. They don't get it that while Methadone is used to help heroin and other type opiate addicts detox off them if they can't do it on their own, it's also been found to be an excellent drug for people with intractable pain. Most pain patients feel it's the best, I agree with them. I feel no 'high' like all the other pain meds give you, I don't get cravings for 'more' as a lot of pain patients end up doing over time because the drug is made so you don't have that happen and should I ever lose my medicare, I could afford to buy a month's worth of Methadone for around 40 to 50 bucks probably for the amount I take. A month's worth of not even half the strength of Oxycontin or Morphine I'd need would cost 400 bucks at least. But ya know, I don't feel I should have to explain all that to anyone, if they are really my friend they would just be thrilled I was able to get the medicare and get the meds to get rid of the pain which enables me to eat and put weight on. I can say that in here because those that know me from chat WERE thrilled when I got the pain gone and would give updates on my weight over the months. I haven't told anyone in real life much, just say yeah if they do notice I've put on 25 pounds over the past 7 or 8 months.
Free, don't let any of 'em get to ya and make you sad. I learned the stress of it all isn't worth it. Give them a little more time if they do come visit without you asking them to and maybe the light will dawn soon. I sure hope it does, there are days when there's nothing like having a friend you can go to and whine your heart out, knowing he or she realizes it's healthy for you to do that ... when you have someone like him/her whom you trust enough to open up to and are assured it won't be taken wrong. It's good for you and should be an honor to them to be thought of in such a wonderful way by you.
If these friends don't come around, as others have already said .. it's time to find new friends. I know it sounds scary, but new friends can be fun as you get to know each other over time and talk about things new to both of you that your old friends would have no interest in hearing about again for the 10th time. :)
Link to comment
Share on other sites
TheHighWay
BikerBabe,
thanks for your insight and explanation. I guess I never thought about it like that. People do back away when they are in an uncomfortable situation and don't know how to handle it. I guess that is human nature. I'm glad you have folks here you can confide in... I guess most of us here understand being isolated in a crowd and the need to vent sometimes! I'm glad you are doing better. I hope Freeatlast can find some relief as well.
Link to comment
Share on other sites
Jeaniam
BikerBabe,
Great post. Thanks for sharing your insight. I never thought about it from your perspective. I have found that when dealing with people who are dealing with tremendous physical pain or a death in the family, etc., that even taking their hand and saying something along the lines of 'I don't know what to say to you' at least indicates that you're there for them if they need to talk or vent. At least most of the people I've dealt with seemed to be encouraged by it.
Link to comment
Share on other sites
BikerBabe
You both explained it every well. It is human nature to back away and be timid of the things we don't understand and that scary feeling we know there is nothing we can do to 'fix it'. We women are worse than the men most of the time too, due to our mothering instinct which tells us to 'fix it'.
When there's a death or someone I know gets ill, I usually come up with some one liner that says something like 'There are no words, so I'm not gonna waste your time or mine trying to come up with any. Let's just sit here together and 'be'. We can talk about whatever comes to mind or not say a word and just get peaceful together, it's your choice'.
When I first met my next door neighbor who has Cerebral Palsy and uses a power chair, out on the walkway, I said to him 'well darn, I finally get strong enough to get out of my chair and NOW I meet you .. shoot .. well, one day I'll dig mine out of the closet and we'll hit the parking lot for some chair races, sound cool?' He about fell out of his chair laughing at me. (He's 50 yrs old like I almost am, the mind pic alone was great.) Since that time we've come up with a better idea. We're gonna get a long rope, put his chair in front of mine (his is powered, mine is manual) and he will hold one end of the rope and I'll hold the other. Then he will give me a 'tow' down the street so we can see how many people we can get laughing as they drive by. We live on a very busy street too, so that makes it all the more fun to plan out. We will try to get it on video too so I can post it online.
I've also point blank told him that when he's out of his chair and hobbling around his apartment, he reminds me of me last year when I couldn't hardly walk due to muscle weakness. We have fun comparing notes of the 'best' places we've dropped like a rock or gotten stuck in our chairs. He's told me since we met that he has so much fun with me because I'm not afraid to talk about it and can make the fun jokes that gets us thru every day. I've always been the type who'd rather laugh than cry, so I try to find the humor in every situation.
Another day, a couple weeks ago I went over to the store with him and on the way there I just hopped on the back end of his chair, grabbed on around his headrest and went for a ride. Man, that was fun, but we came to a pretty bumpy part of the sidewalk and so I hopped off at that point. Didn't want to take a chance of tipping us over! We'll find a better area of sidewalk and do it again one day, we had a riot and everyone driving home from work that came by us and noticed gave us a laugh and a wave. :)
Gotta end this for now. I was supposed to ride up to the bike store yesterday to get the light put on my bike so I can start riding now after dark. Once it hits over 100 degrees daytime here, we try not to go out till after the sun goes down and it cools off some. Instead I spent the day watching my manager remove my dead fridge that I woke up to find out of here and get a new one put in. Then by the time I got all the food moved into the new one I was pretty tired. I sat down and after a few minutes my computer's alarm went off saying it was overheating. I spent a half hour under my desk cleaning the dust out of all the fans, off the boards, etc and then when I booted back up, the vid card decided it didn't want to work right. After removing it, putting it back in, getting new drivers for it and the monitor and making some adjustments, I'm back to normal. By then it was too late to go to the store though. So I'm up early on just a few hours sleep to make sure I'm there shortly after they open this morning to get my light put on. Gotta stay safe out there on the road and after dark without good lights and good flashing LCD lights totally around the bike, you won't be seen and take a huge chance of getting run over. I saved up 150 bucks over the past few months so I would be able to do this once the weather got hot.
Link to comment
Share on other sites
FreeAtLast
So many great posts here, I just don't have time to respond to them all. BB you are a trooper and you have a lot of courage to come out here and lay all you have been through out for everyone to see.
In the last 24 hours I have had my two oldest sit with me and cry. It broke my heart that they were so upset about me having a disease. My oldest says it's just not fair that one person should have so much sickness in their life and although it may not be fair I told her it was the way things are. I think she got really effected by it when her shopping spree for her NY trip this summer wore me out to the point I couldn't continue with her and had to let she and her little friend run ahead and when I caught up I would see what they selected pay the bill and sit down again. I guess she really wanted me in there with her. That's when she realized I wasn't as strong as I used to be, every August when we did our back to school shopping we made it an all day event, this time I couldn't even last 4 hours. So that night she bawled.
Last night it was my son's turn. When I asked him why he was crying he said he had a cold and a really runny nose. You know those little boys. Can't admit they are crying. Then he asked me if I was going to get to see him grow up. I told him absolutely and with the meds today I would probably get to meet my grandkids. He felt better after that and told me he prayed to God that when his family memebers died it would be in their sleep. Heavy prayer for a 10 year old but he's been through a lot with me and watched me beat the odds everytime. He's got the experience in life that this type of prayer would seem natural to him. I pulled him in hugged him and explained to him that I would see him grow up and become a man.
As the evening progressed we talked about how long we wanted to live. He said he definitely didn't want to live to be 90. I told him me neither. I would just be a human raisin and that he and his sisters would say when is that woman going to die. All the while I would be saying, "Sonny, I just want to see my great grand kids grow up." He cracked up and dozed off to sleep. I guess he got what he needed to feel secure again.
My youngest hasn't dealt with it so well, she's just acting out and misbehaving worse than ever. Makes it hard to be understanding in that situation. Somehow I will get to discuss this with her. At 7 it's a tall order to handle and when I had the tumor in my heart she was too young to understand how serious it really was.
Link to comment
Share on other sites
Thomas Loy Bumgarner
Dear Free, Sorry to hear about you having MS and your ex acting like an arse-hole. I will pray for your healing(at least mental and spiritual). You and BB have shown great courage about your illnesses. Hope both of you have near-by relatives to help you out. God's love to you. Thomas
Link to comment
Share on other sites
FreeAtLast
thanks TLB, you are sweet and the prayers are much needed. I started taking cod liver oil with A and D to straighten out my immune system and the health food store ordered something called Padma for me. It's supposed to be another remedy and I am looking into the gluconutrients. I joined an MS forum/group and I am trying to take in all the information I can to find cures for this disease, or at least prolong the inevitable.
Link to comment
Share on other sites
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.