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ritzbit
01-03-2010, 11:57 AM
My step dad accidentally got all my meds today. when we told him I only needed one. and my mom was trying to figure out when the last time I got them filled was. And she searched to find my pills. And saw that I havent been taking them. And was having a fit upstairs. And she's probably going to tell my doctor that I havent been taking them and that I've been lying about taking them for a few months. Im so sick of pills. And Im so sick of getting more. They dont make me feel better. I dont like taking them. And they're going to try to make me Im sure. I dont want them. Im sick of being sick.

:grumpy:

BonusMom
01-03-2010, 12:25 PM
Ritzbitz, I can truly understand where you're coming from although we're a generation apart. I have a pill box like "old" people use am I'm not even old yet (depends on who you ask, I suppose.)

My former sister-in-law had juvenile onset diabetes. In her teens, she didn't eat right or take her insulin. She wanted to be a "normal" teenager (whatever the h*ll that is???). Believe me, it bit her in the butt later as she had two very high risk pregnancies and several eye operations. She even used diabetes as a defense when she was being held on criminal charges (she's now serving eight years, four months at Chowchilla for stabbing my brother, but that's another story in its entirety). Anyway, she was labeled a manipulator because she refused to take her meds and take care of herself. I'm sure that didn't bode well with the probation officer who made the sentencing recommendation.

You're hurting yourself by not taking your meds as prescribed. Your parents love you. They want you to be well. You are not helping yourself by defiant about it. I know you're not looking for any lectures, but I would be so frustrated if my son refused to wear his hearing aid because he was sick of it. If the meds that have been prescribed make you feel un-well, ask the doctor for alternatives.

You claim to love your boyfriend....wouldn't he (and your other family members) be so very sad if you weren't around any longer? Your being defiant hurts YOU in the end. Your parents have every reason to be angry for your not taking medicine as prescribed. They provide everything you need (and probably want) to live a good life. You're disrespecting them and YOURSELF by not doing your part.

I know you're sick of being sick and I understand that, but you do have options and you can control the situation (to an extent) by working with your parents and your doctors. You can choose to you use all your energy in fighting everyone and trying to hide the fact that you're not taking your meds or you can use that energy to concentrate on finding meds that are suitable and taking care of yourself. It's your choice.....

ritzbit
01-03-2010, 12:34 PM
I feel the same right now as I did around this time last year and that was before I knew there was anything wrong with me. I wish I'd have never found out. Nothing has changed at all. And I dont care anymore. Im sick of worrying about this all the time. And no one understands what it feels like to feel weird to begin with and then feel extra weird when you go to your friends birthday party and they all look at you like "what the hell is wrong with you?" when you pull out like ten pills. or when your the only kid at school who's allowed to wear a hat becuz your freezing and kids give you weird looks and tell you to take it off. or when you're informed like every few minutes that your hands are dark purple, as if you didnt notice that already. Im like the quiet girl who doesnt talk to people and now I get funny looks. Im sick of it. I just want it to go away. So I've just been ignoring it. Because thats alot easier.

MicRoMediC
01-03-2010, 12:52 PM
Ritzbit! You totally need to take your meds. They may not feel like they're working but they are. I feel like nothings working for me either but I know in the end they will help. They may even be preventing you from having another flare. If you truly are concerned, keep taking them but discuss it with your doctor. Express your concerns, don't be completely against everything but be open to other options and if you stay calm, I think your doctor and your parents will be open too. I completely agree with BonusMom about everything she said.
Think of yourself as unique, not different. I know it's hard because of your age. Believe me, I'm only 23 but had to grow up really fast. A little reminder to take care of yourself, read (or reread), Saysusie's blog about Laurie.
Micromedic

ritzbit
01-03-2010, 01:00 PM
They just tell me to take my meds. I dont want to be on so many. And no one seems to really care.

Saysusie
01-03-2010, 01:08 PM
Rizbit;
At the risk of sounding a bit harsh, I just want to say that you are not the ONLY person who suffers from these issues and that it is not true that no one understands. You are here.. amongst people from all over the world. Some who suffer much greater than you and some who do not suffer greatly at all. However, ever single one of us suffers and every single one of us understands. We have all suffered from great bouts of depression due to this disease and the way that it has disrupted our lives and brought, to a complete halt, the life that we once knew. We all continue to deal with doctors who dismiss us, family members who don't understand, friends who have left us, and..the worst..LOVED ONES WHO HAVE DIED FROM THIS DISEASE!! But we are here, we are alive, and we are helping one another!
Many of us have learned to live our lives, with this disease, by counting our blessings rather than hating our losses. I have lived with Lupus for over 20 years and I lost my precious daughter to this disease. Yet, I try and try to maintain a positive attitude and I make it my mission to use my time and energy to help others to live productively with this disease. I am grateful for so many small things that others may take for granted..like the fact that I have a family who loves me and friends who support me. Those are truly blessings that many people do not have. Those are blessings that YOU DO HAVE!
It is not healthy for us, emotionally or physically, to continue to stay in a state of hatred for the illness. It is not healthy to make decisions that could be destructive to ourselves, like not taking our medications. You do yourself more harm by giving up and maintaining a position of anger, depression, and defiance.
Every person here at WHL wants to help you. Every person here at WHL cares about you. But, we cannot do much for you until you have decided to care about yourself, to care about your health, to care about making the most out of the life that you have..because YOU ARE ALIVE.
Instead of giving up and being angry..it might be healthier for you to become strong, take charge of your life, make the appropriate lifestyle changes so that you can live a relatively normal lifestyle, use your energies to find ways to be healthier and happier. These are the things that we want to help you to do, but you have to want to do them!
Anger and depression are all parts of this disease that we all must deal with. Many of us have found that the support, understanding and comfort that we receive from one another here at WHL has helped us through some of our most difficult times. Please, let us help you through this difficult time that you are experiencing now. But, more importantly...please, please make the decision that you will do all that you can to help yourself.

Peace and Blessings
Namaste
Saysusie

ritzbit
01-03-2010, 01:18 PM
I did take care of myself. Almost all last year. And nothing changed. I have too many things going on. Im constantly stressed. And there's just too many things to do. And I just keep thinking that in about a year Im giong to be on my own and then Im not going to know what to do. Everything has just felt completely out of wack all year. I dont handle stress well at all. Then the stress makes me feel more sick. And I try to just ignore everything. Like homework and friends and family and work and lupus. I dont want deal with this. I cant. I am constantly on edge and about to pop and I dont know what to do because nothing I've dont so far has helped. So I just want to give up trying to make things better because it seems like a lost cause.

kim,l
01-03-2010, 06:35 PM
dear ritzbit i know that being stressed can make you feel worse i had a dreadful year and was constantly stressed and i know we take a lot of tablets but we do it because we have to you have your whole life ahead of you you are not weird you are just in a situation through no fault of your own life deals us some unexpected blows sometimes and i know life feel so hard right now but not taking your meds won,t help i have a daughter who suffers depression and at times she feels like you and it so hard to watch but as a mother i know your parents are only thinking of your well being and i know you think we do not understand but sweetheart we do and if i was there right now i would give you a big hug. please try to give the medication a chance it doesn,t work over night but please give it a chance to help you . it maybe that you need to try different ones to you find one that suits you please talk to your parents or your doctor about how stressed you are do not suffer this in silence. we are all here for you and you can talk to us whenever you need we care about you alot please donot ever doubt that. love and many hugs kim l.

ritzbit
01-03-2010, 08:34 PM
My moms calling my doctor tomorrow =( I dont really want her to.

kim,l
01-03-2010, 09:15 PM
i know you do not want to but just give the doctor and your mum a chance to help you i will be thinking of you try to have asleep i will message you to see how you are tommorrow hugs kim l stay strong.

debbie-b
01-04-2010, 06:25 AM
My step dad accidentally got all my meds today. when we told him I only needed one. and my mom was trying to figure out when the last time I got them filled was. And she searched to find my pills. And saw that I havent been taking them. And was having a fit upstairs. And she's probably going to tell my doctor that I havent been taking them and that I've been lying about taking them for a few months. Im so sick of pills. And Im so sick of getting more. They dont make me feel better. I dont like taking them. And they're going to try to make me Im sure. I dont want them. Im sick of being sick.

:grumpy:

Hi Ritzbit,

I want to tell you, I TOTALLY UNDERSTAND, BUT, you know, there is always a BUT.
I am 53 ( 54 in a few days), I hate taking my meds. I was diagnosed a couple of years ago, my first rheumy ( a big jerk), send my home with my meds, it was like " here take them and shut up". He did not explain anything.
I took the meds for about three months and than stopped, because I didn't feel a difference. Then I finally got a computer and I found WHL. It tought me alot, I learned that Plaquanil takes up to six months to work ( which my idiot rheumy never told me).
I have found a new rheumy, he is great and I started plaquanil in november again, I don't feel a difference yet, but now I know to stick with it.
Even though you don't feel much of a differance, it could be, that without the meds, you would feel much worse.
We all expect a quick fix, but there is no such thing, when it comes to lupus, but maybe the meds will prevent things from getting worse.
In the beginning I had " only" joint and muscle issues, now I have possible kidney and liver involvement, plus sjogrens and raynauds. Would I have gotten kidney,liver, sjogrens and raynauds, if I had taken my meds in the first place? I will never know, but it is always in the back of my mind, " what if".
You are in a better position, than I was, I had no info back then, you do. Please use this info wisely and do the right thing.
TAKE YOUR MEDS.

Debbie

Bonita
01-04-2010, 10:30 AM
I think we all feel the same way. I was 58 when diagnosised and maybe it would of been better when i was younger. They just increased my methotrexate again and that scares me but the alternitive of maybe dying from these dieases is worse. yes i would not wish these dieases on anyone but it so happened and i have to deal with it just as anyone who is diagnosised with any other dieases. I am a Christian and i depend on my faith to sustain me. As for being different as a kid i thought most kids wanted that. I hope you can come to grips with this and deal with it better it is good that you have a good family support system. Bonita

SandyR
01-04-2010, 09:52 PM
Ribitz,

I know we have spoken about this many times and everyone else is saying the same things (take your meds) but it's out of love and concern. Your parents are worried about you. We are all worried about you. Your friends who know what is going on must be worried about you too. You are not alone. Lots of people there and here care for and about you and what happens to you and what you do. Like others have said, the meds take different amounts of time to start showing a difference or may require a different amount or even a different drug therapy. It is so important that you communicate what you are feeling with your doctor. If you don't tell them that you are not feeling differently (and this means as many times as it takes them to hear you) then they aren't going to know that your meds aren't working and aren't going to think they need to change course with you. I know you have lots of wonderful plans for next year and the years ahead and there is going to be a lot more stress involved in that time in front of you. It is so important that you work on managing that stress now and working through it by continuing with your medical plan that you have created with your doctor. It is important that your parents know when you are on and off meds. I know it seems like what they don't know won't hurt them, but it may just hurt you. Your parents need to know what you are and aren't taking so that/ God forbid, if something should happen to you and you couldn't speak for yourself, they would be able to communicate your current medical conditions and treatments for you. They need to know what you are doing to help keep you safe and healthy.

Health isn't something that we are lucky to be ignorant about in this group. Each and everyone of us understands how isolating and depressing and frustrating disease and dealing with disease is no matter if we are 18 ot 31 or 58 or diagnosed last year or last month or last century. We have all, in our own ways, experienced the 5 stages of grief http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model are are all in different spaces along that process. For some of us, myself included, we waver back and forth through the stages whenever a new stressor or symptom comes along. You must try to work through this period of anger, depression and denial so you can accept your responsibilities to yourself, your body and your loved ones and start taking charge of your health.

We are all here for you, and so is your family and friends (the true friends) and love and support you. Now, GO TAKE YOUR MEDS! (And also schedule that eye appointment while you are setting goals and achieving them).

Sandy

magistramarla
01-04-2010, 10:13 PM
Hi Ritzbit,
As someone else mentioned, I've also seen a student with diabetes crash and burn because she was in denial and wanted to eat junk food like a "regular teenager". On the other hand, I had another student with diabetes who was extremely mature about taking care of herself. I had enough confidence in her to take her with us to an out-of-town convention. Jeff, me and all of the other students were well aware of Ashley's condition and we all looked out for her with a lot of love. She did fine, and it gave her the confidence to continue being involved in fun school activities. She later became one of the stars of the school theater department. If you are open and honest with teachers and other students, you'll soon learn who your real friends are. Then just ignore the rest.
As everyone here has told you, some of the meds that we take can take a long time to start showing any results. Also, my rheumy told me that the primary reason for me to take methotrexate was to keep the RA from progressing. So, perhaps a med that doesn't seem to be working might just be keeping you from getting worse.
Work out a medication plan with your doc and start to take responsibility for sticking to it yourself. That will prove to everyone that you are ready to take on adult responsibilities.
We all know that you can do it, and we're here to listen when it gets rough.
Gentle Hugs,
Marla

ritzbit
01-05-2010, 10:07 AM
My mom took all my pills and is like hiding them in her room. And some of them like the prednisone I was actually taking. And when I yelled at her to give them to me the other morning she gave me two 1 mg prednisone pills and a 5 mg sleeping pill instead of my prednisone. becuz she's an idiot. and should be glad I didnt just throw them in my mouth and take them becuz I was late getting outside to my ride for school. I told her I'd just start taking them again to make her leave me alone about it but she said she was going to call me doctor and either she hasnt called her or my doctor hasnt gotten back in touch with her becuz that was 2 days ago. And Im off school today and I was supposed to be giving an application for GSP in today which she really wanted yesterday, so I dont know if tomorrow will just be too late for it. Im like UGH

abbasgirl
01-05-2010, 11:55 AM
Ritz...have you shared any of your feelings with the doctor...or the nice one you like to see?

ritzbit
01-05-2010, 02:06 PM
They know what I dont think any of my meds help with my Raynauds at all becuz it hadnt gotten better after being on norvasc and plaquenil for about 8 months and I was getting frustrated becuz I have done everything they tell me to do with that and my fingers are literally ALWAYS dark dark purple. And unless I almost burn my hands with hot water it doesnt stop. Its frustrating. They got ahold of one of my nurses today and they said to just start everything up the same as I had been taking them other than the CellCept which I have to add gradually again for the next 3 weeks. So I guess there's nothing I really need to worry about with them.

DrinkofWtr
01-05-2010, 04:27 PM
I understand your frustation. Is not taking your medications a solution to the problem? I think not, although I understand how you feel.

kim,l
01-05-2010, 07:08 PM
Dear ritzbits how are you feeling today areyou taking your meds hope you have spoke to your doctor sorry i did not check on you yesterday but having trouble with computer but i did not stop thinking about you this disease is so frustrating i know but weallcare about you will check in again tomorrow hugs kiml

ritzbit
01-06-2010, 06:14 AM
I my mom is making me take my pills in front of her and is hiding them all from me so I cant even just take them on my own and she tries to hand me the wrong pills and its annoying

Saysusie
01-06-2010, 10:32 AM
Sweetie;
Once again, I am going to try not to sound harsh. But, your Mom has taken this action as a response to action taken by you and BECAUSE she loves you and wants you to get well. There is no need to get frustrated over a situation that was, honestly, started by you.
Now, you are in a position where you may have to earn her trust again because she does not want you to get sicker (due to not taking meds..and that is a very serious issue with outcomes that can be fatal!). So, take you meds diligently. If she is making errors, then either talk to her patiently and kindly to let her know exactly what you should be taking and when you should be taking it. If you find this difficult to do, then write her a schedule so that she can give your meds to you correctly.
At this point, it is time for you and your parents to work TOGETHER to get you as healthy as you can be. In order to do this, you must find a way to put aside the anger and frustration. After all, the primary goal here is to HELP YOU!! Right now, you are butting heads and I am sensing that a lot of this is due to your feelings of helplessness and hopelessness. One thing that you should keep in mind...THERE IS ALWAYS HOPE AND THERE IS ALWAYS HELP.
I, too, suffer greatly from Raynaud's and my fingers and toes are always purple and always cold. My daughter, when she was alive, and I would take turns rubbing each others hands and feet (she too had Raynaud's) or putting our hands underneath each other's arms. Even though this was not a permanent solution, this combined act of love and kindness took away our frustrations.
I am suggesting that you try something competely new..try approaching your life and everything around you with kindness and love. Look for the GOOD in every thing and in every situation (because the "good" is always there) and live your life giving love and being kind. You will find, I guarantee, that what comes back to you is even greater kindness, greater love, much understanding and tons of compassion.
It is true that the world gives you what you give. If you give anger, frustration, resentment, and hopelessness...that is all that you will see in your world.
If you give kindness, love, understanding, forgiveness, acceptance, and caring....that is what your world will give back to you. And, most importantly, you will find that your suffering is not nearly as great as you think it is!
I am sending you love..from me to you. I am sending you understanding...from me to you. I am praying that you will find comfort and that you will accept the love that is given to you. You are loved!!

Peace and Blessings
Namaste
Saysusie

abbasgirl
01-06-2010, 12:28 PM
There has been a lot of great advice shared on this thread with a lot of heart behind each one. Each post is full of wise caring advice. But there are some things that stand out to me I feel needs pointing out.

Ritz has shared things with us lately that look like red flags to me. I could be biased with my thinking here because I'm still healing from abuse from my parents at the ripe old age of 40, but I'm concerned that her mother is giving her medication the wrong way. She should be in the know about that. I'm also concerned that her mother has slapped her as she shared with us some time back in another post. I'm concerned that someone with the health problems she has is expected to babysitt children. I don't know how much babysitting she is doing, but I hope she's not being relied upon for that too much. Helping out is one thing, but putting more on her than she can handle is another. I may be jumping the gun here, I don't know. Counseling for her mother and herself may be a good idea. A mother that is involved in her child's life should know how to administer medications and making sure they're being taken the right way. So should her father. Mistakes are made, no one is perfect, but by now I'd think her mom would know how she's supposed to be taking her meds. Some teenagers are perfectly capable of taking very good care of themselves. My daughter has always wowed me with how independent she can be, but I would still want to be a huge part of any healing she would need and making sure she isn't going through too much stress the best I could. And there is never a good reason to take a hand to anyone let alone your own child. She has a doctor that isn't listening to her or taking the time to explain things to her. There's no such thing as a perfect parent or doctor. And it's normal for children and parents to argue and such... but it's not that hard to be in the know about your child's health and well being and it's never good to strike someone. We can't be everything for our kids, but we can be there for them the best we can.

Ritz, do you think maybe you and your mom would benefit from counseling? Do you think you can sit down with your mother and tell her the things you tell us and she would be able to understand? Explain things to her, calmly? I don't know all the facts about your situation, but please consider this and all the advice you've been given. You are loved and appreciated here and at home. You are. You're a very talented and bright young woman. But if you cannot sit down and iron things out with your mom, understand her just as you need to be understood also, you may need the help from counseling that could help bridge the gap in communication. You could try to have a talk with your mom and if nothing will budge then maybe suggest to her that you could both perhaps get help with counseling. If things aren't okay at home, it affects everything else in your life. You do need to forgive her sweetie and understand how she feels also. You also need to tell your doctor how you feel you are being treated by him/her and that you need to understand why you are taking medication that you are still taking. Everyone deserves to have a doctor that will take the time to explain why they prescribe what they prescribe. If the doctor is insufficient in that, you need to find another doctor that isn't. You don't just give up, okay? If you do that, you chance things getting a lot worse which hurts you more and your parents. If you want to take a break from treatment and it's safe to do so, I don't see any harm in that. But you need to talk to your doctor about that first and your mother.

There's no doubt things need to be better at home for both you and your mom...you do have some responsibility in that and to take your medication, doing everything you can to help yourself. Don't hide things from your mother like that sweetie...people need to know you're not taking your meds, that's important, and you also need to tell them why you don't want to take them. Don't get defensive about it...just explain how you feel about it. I promise you hiding things from your mom will not help life be better and you both need to be communicating with each other better which means you hear her out completely too. It's gotta swing both ways. Relationships are a lot of work. Although some things she has done seem like red flags to me, it's a good thing to know that your mother wants you to take your medication...she wants you to be well and that says she loves you and cares. I'm just a simple minded country girl with no degree in anything...but from the sounds of it I think you both need to work on communicating better. If help in that is needed from a good counselor, it's something you both should consider. And please know that everyone here that has given you advice about this did so lovingly. We care about you very much!

Saysusie
01-07-2010, 10:04 AM
Abbasgirl;
This is a very astute and very powerful post and so wonderfully said. You bring up some very important issues that should not be overlooked. Thank you, so much, for posting this.


Peace and Blessings
Namaste
Saysusie