If You Can Believe This! (rant)(long) | Lupus Forums at The Lupus Site
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If You Can Believe This! (rant)(long)

Discussion in 'Chit Chat' started by Karly1964, Apr 6, 2008.

  1. Karly1964

    Karly1964 Guest

    :eek: I have been having trouble with my car lately,:mad: and basically if you want to go anywhere around here you need a car, or ride a bus, everywhere I need to go is pretty far away....My neighbor said well, Karla all you have to do is get your bike (3 wheel bike since I broke my hip) and ride wherever you want to go. Well, first I don't have the energy right now to even pump the tires up :worried: let alone drag it outside, through the mud, down the mud lane, through the grass and up a hill just to get to the road. Then, ride it miles and miles in the hot sun of Indiana summers, 8) I'd be lying at the side of the road unable to move in minutes, or be paying for the effort for weeks I am sure. :bruise:

    Sometimes I do ride in the evening once the sun starts going down, but I wouldn't dare try to ride it ten miles to the doctor or anywhere like that. I try so hard to let people know how lupus affects me, but they either don't listen or want to have a clue...how can this person see me on a daily basis limit my activities, be out of breath getting the mail just down the hall and giving up my puppy because it is too hard, yet suggest I ride my bike everywhere I go? I try to understand and be sympathetic with him because he has type 1 diabetes and has to test blood numerous times and take a lot of shots, but rarely, well really never does he think about what it takes for me to do things.

    It is about as frustrating as my father who can't be bothered to take me to get some blood work done. Basically no one wants to be bothered, I could understand it if I asked all the time, but the only time I have ever asked for someone to go with me to a test was when it was required, a CAT scan that they gave me funky medicine and a heart cateritization, other than that I take myself to every doctor's appointment, test, pick up meds etc. I try not to be a bother. If I am ever sick I have to beg for someone to bring food or something to drink and if they do it is the least amount, even if I pay for it, and they (usually my mom) complains the whole time she is here either about having to get out to go to the grocery or about how messy my apartment is.

    I have always gone out of my way to make emergency room visits with people, run food and drink to them, medicine, sat with them after surgery etc. Most of the time it is my Mom, but she makes out like a martyr if I ask for any help at all. It just really makes me feel unloved, last time when I was supposed to have a heart cath. I called my mom to ask if she could take me, and she told me how much a bother it was, how she was going to not be able to take my brother to the library (unemployed, sponge 45 year old brother with no disablilities) and how she didn't want to drive to the capital (45 minutes away). Basically told me how much of a problem I was, well what she did not know is that my sister's answering machine was recording her all the time and my sister finally heard how she treated me, I had told her but it was hard for her to believe.

    Now if something like a serious test comes up my sis can take me, but I don't ask her for other things because a lot of times she is working at the emergency room (she's a RN) or with the girls doing their thing. But if she is available I do ask because she will try her best.

    I guess I should take my life as I did when I was growing up, we were on our own, fed ourselves breakfast, supper, and lunch if we were not in school, If I got hurt I fixed it, we did the house cleaning, watched my baby sister and basically when they coined the term latch key kid they were talking about us. Not that people haven't had it worse, it is just that when faced with some things it is nice to have family back you up and help.

    Maybe that's what this whole rant is about, I just want my parents to be there in case I need them. I am serious neither one would know if I died right now, really I am serious, especially my dad who only calls at Christmas. How they can be so apathetic I don't know, but it definately explains how I could get abused and no one knows, my sister could break her nose and recieve no medical aid, how my brother broke his foot and no medical treatment, and how I could have pneumonia for 6 weeks before the school nurse sent a nasty note home for my mom to take me to the doctor because I had a fever of 103. Basically when I was a kid it was me against the world, I have learned to share with people, but find it hard to ask for help when I need it although I do when absolutely necessary...It takes a pretty big tragedy to get the family to be supportive, sad because we all miss out on each others company and love. Karly

    Thanks for letting me rant and rave and have a bit of a pity party, I guess I just needed to get that out.;)
  2. Maia

    Maia Registered

    Sometimes, you just have to "give up" on certain people when it's better for you to do that than to keep trying to get them to understand. We can't make anyone understand that doesn't want to... & some people just really don't want to imagine their loved ones or others in a lot of pain/fatigue/problems.

    The best way I've found to explain it is that it feels like I have 3/4 to a full case of the flu for weeks and months at a time. Seems to work best after someone has actually endured the flu for 5 days themselves... ;) I also tend to only actually discuss my condition with people once, and thereafter only if they bring it up. I will just say "I'm not feeling well today" if I have to back out of something for example & usually that is enough.

    For practical advice, is there a "Meals on Wheels" program in your area? Around here there is and they deliver warm meals to your doorstep for a very nominal fee ($5 or less). They have volunteers driving their own cars and delivering things. Something to look into for when you're really sick and need some food delivered.

    If you are of the religious sort, many churches have programs to help people and especially their own members. This would include rides and company to doctor's appointments and procedures and such. Plus it's often a great way to meet other people, and socialize without a huge time or energy commitment.
  3. ALWIN

    ALWIN Guest

    I'm sorry he said that to you Karly.

    You have every right to have a bit of a rant, but i don't consdier a rant the same as a pity party. In fact i have never ead a thread on here where people have described themslves as having a pity party and thought that's what they were doing.

    it's horrid when you are poorly and you still have to drag yourself around and get everything done as if you were fit and well.

    Take good care.

    Sending you a big fat unconditional hug :hug:

  4. Karly1964

    Karly1964 Guest

    I have found a service that will take me to appointments as long as a family member is not needed, they will go anywhere in central Indiana which is helpful. Our Meals on Wheels only delivers lunch, but I am checking into that as well as someone who can help clean around the apartment and help me with daily care these days are kind of rough. Maybe even take me to the grocery store as well. Or run for me. All of these services are covered by medicaid which I have as well as medicare. So I will let you all know how it is going. Karly:)
  5. Karly1964

    Karly1964 Guest

  6. Taree

    Taree Guest

    Hi Karly. Have pm'd you.
  7. pennylp

    pennylp Registered

    Hi Karly,

    I am so sorry you have a family that is so selfish and self centered....I wish everyone could have the support I have...Between family and friends I am very lucky....
    You have tons of friends right here on the site, and they all care about you and like you for who you are and do not care if your apartment is not tidy and understand your illness... The support on this site is wonderful and anytime you are feeling down you can come on here and talk to someone.. They will lift you up.
    I was diagnosed with lupus about seven years ago also RA... a few years later I was diagnosed with non hodgkins lymphoma. Certain members of my family pushed themselves away from me..I think they think if they do that it wont hurt so much if I should die. All but one member is by my side now.. But the support I got from this site is incredible, People called me at home sent me cards wrote me letters and supported me when I was at my worst... And I will allways be grateful for all the people here on this site... They are my family.
    I have since removed myself from all negativity including my one sister. As much as I love her she continues to hurt me so I no longer see or talk to her..
    If we get to distressed we get ill,so if you can walk away from people that upset you then maybe you will feel better. I know I do...
    I take one day at a time and do not make long term plans. I live for those I love and love me back, and I am very happy...
    Please know that you are special person they are the people with the problem not you...And that you can come here and know you are cared for all the time...

    Love Penny

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