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ritzbit
05-20-2011, 06:41 AM
Some of you know I have been really bad about taking my pills before. I feel stupid because I know why I need to take them, I know taking them is important, I know I need to take them to maintain everything and not get sick again. BUT everytime I get sick I am so good about taking them and dont have a problem with it at all, and then as soon as I start to get better I look at them and have to force myself to take them. I know I cant just take them everytime I get sick to make things better and then just quit, but that ends up happening everytime, and everytime that has happened I've gotten more sick than I was the time before. I dont know how to just suck it up and take all this junk. I already am feeling that way and dont want to end up off my meds again and getting really sick. Everyone keeps saying "oh after this last time I bet she'll never do that again" but I cant help the way I feel. I want to get over the way I feel about my pills. I know I need them, but I hate them. Its easy for someone to tell you to take all your pills when they aren't taking so many everyday.

steve.b
05-20-2011, 06:56 AM
i take 11 in the morning and 7 at night.
i should take more vitamins, but i think i have enough already.

there is no easy magic potion to help make you take them.

just shear stubbonness.
i bet you can be stubbon if you want to.
be stubbon about your meds.
untill you can change your mind set, it will always be hard.

SandyR
05-20-2011, 07:00 AM
I'm like you with this. I just hate taking pills. It's really not a good position to be in when you need them to keep you alive. Maybe that's the trick for us - to change the way we think about them as tools for when we're sick to tools to keep us alive.

tgal
05-20-2011, 07:10 AM
I really think the majority of us feel this way ritz. It is 9AM and I have been up for two hours and I am still trying to psych myself up for my meds. For me it doesn't stop when I am feeling bad because my meds are not helping me feel better right now (going to the doc at 11) so it seems like a waste. I KNOW it isn't but I just hate them so badly! I think Sandy is right about changing our view of them. I am gonna try that from here on out!

debbie-b
05-20-2011, 09:09 AM
Hi Ritz,

Here is an old lady speaking.
I have been put on MTX 12 weeks ago and I am good about giving myself the shot, mainly because it is only once a week, every tuesday and secondly because I am hopeful it will help( which so far it hasn't). I was also put on folic acid, which I hate to say only took once in a while, because I didn't find it to be important. Well, let me tell you, I found out it was, the hard way. I didn't have alot of nausea with the shots, but I was very weak, leg wobbling weak and I had the corners of my mouth crack open, very painful. So I went on line to find out why the corners of my mouth would crack open like that.
SURPRISE it is because of folic acid deficiency. Well needless to say I started to take the FA every day, after two days my mouth healed and after my next shot, I didn't feel as weak as I did before.
I totally understand how much you hate your meds, because I hate mine. I promised myself that I will do better from now on.

Debbie

Gizmo
05-20-2011, 09:50 AM
May I ask you all what it is that you hate about taking your pills?
Do you have side effects?
Are you worried about long term effects?
Are there so many that it's just hard to get them all down?
Are there particular meds that you hate taking more than others?

rob
05-20-2011, 10:25 AM
OK, this might sound silly, but here goes-

I hate taking my meds too, so what I do, is keep a jar of my favorite candy right next to my meds. I take my meds, I grab few peanut M&M's, and enjoy. You would be surprised how far a little reward can go when it comes to your subconscious.

It's worth a try maybe...

Rob

tgal
05-20-2011, 12:18 PM
May I ask you all what it is that you hate about taking your pills?
Do you have side effects?
Are you worried about long term effects?
Are there so many that it's just hard to get them all down?
Are there particular meds that you hate taking more than others?'

I wish there was a real and logical reason but it isn't that simple. I actually don't have as much problem with the ones at night as I do in the morning. It doesn't have anything to do with the actual meds themselves. It is a mental thing. Until I have to take those first pills in the morning I can forget for a few moments that I am sick. Yes, I still feel bad but I can forget that this is a long term thing that I will most likely have to control the rest of my life. It is stupid, I know. They are just pills and they help me feel better but but those pills symbolize what I am going through and sometimes I just dread taking them.

Don't get me wrong, I DO take them. I learned the hard way what happens when I don't so there is never a question of if I will take them or not. It is simply a matter of what time I take them and making mysel get up and do it.

@Rob- LOVE the idea!!! Not sure how much good that is going to do me right now since I am doing an atkins type diet since I read that it can help with seizures.. hmm.. I did read the best candy for a splurge is peanut M&Ms. maybe a couple of those with the pills will make it better!

ritzbit
05-20-2011, 12:52 PM
'It doesn't have anything to do with the actual meds themselves. It is a mental thing.

Its a complete mental thing for me too. I take my morning pills at school and thats not so bad. But when Im already tired and exhausted at the end of the day and have a pile of 7 (sometimes more) of pills I just dont want to get up to get them. I have to go get them, get a glass or bottle of water, find something that will wash away the nasty taste some of them leave. I just get fed up with it. And Im not the best pill taker to begin with I gag on them sometimes and it makes me want to puke because they'll start to dissolve if I dont swallow them quick enough. I just hate the whole process, and yes it is a process.

MaryS42
05-20-2011, 02:11 PM
Hi I'm a newbie on here and its not actually me that has Lupus its my partner Alan because he was involved in a motorcycle accident in 2006 where he sustained terrible injuries he was already on a lot of meds now he's been diagnosed with Lupus and has been put on even more meds this now means for him that he takes 21 tablets in the morning and a further 11 during the day/evening so he takes over 30 tabs daily and let me tell you he hates it not just because he has to take so many meds but also all the different side effects these drugs give him the worst being he takes 60mg of steroids and the mood swings are horrific not just for him but for me as I am on the receiving end of these anger and frustration outbursts.We are in very early days of his Lupus diagnosis only April 2011 and I can only imagine how hard it is for everyone on here but I hope that you are feeling better and that you realise how important your meds are and take them when required and hopefully keep well in the future. Love M.x.

Gizmo
05-20-2011, 02:30 PM
I look at my meds (5 pills for breakfast, 6 for dinner, 2 before bed) as a GIFT. I am SO fortunate that I have access to medication that can help me to live a better life. My life would be pretty intolerable without my pills. Yes, sometimes I forget to take them (and I pay the price) and sometimes I don't bother to load my meds for the week and then it's really a pain to get each bottle out. But ultimately, they are all that stands between me and "the wolf". Why would I chose to be devoured when I have materials to build a fence?

Yes meds are a symbol of my illness if I chose to see them that way, but they are also a means to have some control over my disease and I will embrace the power they give me. I really dislike adding new meds to my regime because I am afraid of side effects, but once I find something that helps, I gladly swallow it - preferably with a big glass of chocolate milk!

rob
05-20-2011, 04:14 PM
Its a complete mental thing for me too.

It is for me as well. Sometimes I get angry and frustrated and I lash out at anything that has to do with me being sick. I sometimes wish I could just stop all meds and by some miracle, just get better. But of course, I know what the real world results of not taking meds are, so quitting them is not an option.

Rob

giggle
05-20-2011, 04:35 PM
I didn't like taking my meds for various reasons.

Plaquenil because it makes me terribly terribly nauseous, especially because sometimes I feel like its not working because I am still 'sick' anyway... answer: take it just before my night time shower before bed. So any nausea happens while im sleeping. I take all three of my plaquenil tablets at once instead of split up as recommended by my doc.

Thyroxine was hard at first because I had a bad attitude about it, I didn't think it would work because it hasn't in the past. Its also really hard to plan the right time to take it 30mins before or 2 hours after food... answer: take it before I have a shower in the morning, its the first thing I do. I have to make myself go to the fridge and take it before I even visit the bathroom.

My vitamins... somebody please give me an idea of how to make myself take them? PLEASE! lol I haven't found a way to make myself take them. Hell, I havent even bought the vit D supplements I need or the magnesium or what ever it was the doctor said I should be on. : / Maybe I should try Robs treat idea.

tgal
05-20-2011, 05:05 PM
The sad part for me is that none of my meds make me really sick and I STILL have times I just hate taking them! We just upped the MTX so I may not being saying that tomorrow but on the low dose it upset my stomach some and I slept a lot that day then I am fine the next day. I am actually OK with taking it but when I look at 12 (yes, back up to 12 since they added them MTX) different bottles and some I have to take 3 or 4 each it just makes me sigh and stomp my feet like a two year old. Then, I take them like I am supposed to because I paid the price dearly for stopping my plaquenil and I won't ever do that again.

Yes, it is mental. I get through it but there are moments that I just want to stop

ritzbit
05-21-2011, 09:53 AM
My problem is putting them off. I'll look at them and dont feel like fighting myself to take them so I tell myself I'll take them later. But sometimes I forget and lay down and the second Im in bed Im out, Ive been really exhausted lately. I keep trying to come up with good ways to have them with me before bed. I even leave some of them ON my bed with a bottle of water just in case I forget and still sometimes that doesnt help.

tgal
05-21-2011, 10:17 AM
Actually IBS and Lupus do tend to go together. Saysusie made a wonderful post about it several months ago. I am heading out now but I will look for it later and post it

ruziska
05-21-2011, 01:51 PM
I have a husband who has taken upon himself each night to ask me if I've taken my meds. Mind you, we've had days where we'll hardly speak to each other but THAT he doesn't forget. I usually respond with "ya, ya, ya" then get up and take my meds.

rob
05-21-2011, 03:10 PM
My problem is putting them off. I'll look at them and dont feel like fighting myself to take them so I tell myself I'll take them later. But sometimes I forget and lay down and the second Im in bed Im out, Ive been really exhausted lately. I keep trying to come up with good ways to have them with me before bed. I even leave some of them ON my bed with a bottle of water just in case I forget and still sometimes that doesnt help.

But, it sounds like sometimes your water bottle idea does indeed help. So hey, at least that's progress. And the fact that you know that you have a hard time taking your meds, and that you are here talking about how to fix this problem, that's real world progress too. You don't have to be perfect every day, just keep chipping away at it.

Rob

Gizmo
05-21-2011, 07:31 PM
Ruzika, you made me laugh outloud! He really must love you if he wants you to be well, even when he's too mad to say anything else.

ritzbit
05-23-2011, 04:51 PM
I am trying to be good really bad but I'm having a hard time. I dont know why I'm like this with my medication.

Corella
05-24-2011, 01:32 AM
Try a set of balancing scales with a photograph of yourself in ill health or anything that reminds you of being or feeling ill, it could be anything that reminds you of being sick, have that one one side and have your medication along with a photo of you feeling fabulous on the other.

Ask yourself which do you prefer - feeling sick or taking pills and feeling better?

I havent been diagnosed as yet but am already on Vitamin D as I cant maintain my levels - I will go on to 6 tabs a day in the winter, I am on Omega 3 fish oils for my joint pain and Biotin to try and keep my hair in some sort of condition. I have figured I dont like eating a lot of fish and I dont like joint pain, so the Omega 3 is the trade off for that.

I have figured that I want to keep my hair for as long as possible, so the Biotin is the trade off for that and I have figured that I do not want a poor immune system, or bone problems from lack of Vitamin D so I take the Osteo Vit for that.

I dont want to wheeze so I take my inhalers - so everything is a trade off - the hassle of taking medication traded in for relatively better health.

Take a good look at all your meds, have a really good look at what they are and what they do for you - and I mean a really good look, and see them as part of the currency in return for a life worth living.

I cant imagine how hard it is as I havent seen my specialist yet and dont have a diagnosis but I know its hard to take medication but I do try and look on it as bargaining power - Ill take this and in return I have my life.

But first of all I would start by going through all your meds, REALLY seeking out what they do and how they help and what will happen if you dont take them and if you are prepared to take that risk - as in is it worth it?

Linda From Australia
05-24-2011, 04:44 AM
YEP! Everything Corella said

tgal
05-24-2011, 07:15 AM
ditto what she said!

ritzbit
05-24-2011, 12:46 PM
Take a good look at all your meds, have a really good look at what they are and what they do for you - and I mean a really good look, and see them as part of the currency in return for a life worth living.

I know what all my medications do. I know they're important. It doesnt help me not wanting to take them. I dont completely feel like I do have a life worth living. Everything I wanted to do with my life seems way out of reach now. Im only 18 and have to look forward to a life where my health will more than likely continue to deteriorate. I have all these high goals set for myself and probably wont achieve half of them. The meds dont make me feel like Im getting anywhere with this disease. They got me back to walking. But what good is that when your too tired to want to walk.

SandyR
05-24-2011, 01:03 PM
May I ask you all what it is that you hate about taking your pills?
Do you have side effects?
Are you worried about long term effects?
Are there so many that it's just hard to get them all down?
Are there particular meds that you hate taking more than others?

It's mostly a mental thing for me too. Mentally, if I don't FEEL sick then I don't remember to take them/feel like they're just pharmaceutical poisons in my body.
It's also partially a physical thing for me. It stems back to childhood. Pills always made me gag. Most of them still do. Even my toothbrush makes me gag. Gagging's not fun and so I don't like to take pills. Still...If I NEED to take them, I'm better at taking them then if I SHOULD take them. I've also gotten much better as I've gotten older with this.

SandyR
05-24-2011, 01:26 PM
I know what all my medications do. I know they're important. It doesnt help me not wanting to take them. I dont completely feel like I do have a life worth living.

Your life IS worth living. If you don't feel like it is for you then know that it is to me. Where else would I go to see such beautiful nature photographs if not from your page? Who else would remind me so much of the over-achieving hard to please (and I mean that in a kind and loving way) me from high school? In the time since I've known you on here I've come to like, respect and look forward to your thoughts and opinions. I may be older than you but I think in many ways you may be wiser and I consider you a friend. That alone makes your life worth living to me.


Everything I wanted to do with my life seems way out of reach now. Im only 18 and have to look forward to a life where my health will more than likely continue to deteriorate. I have all these high goals set for myself and probably wont achieve half of them.
EVERYONE has a point in their life where they hit a wall in reaching some of their goals. They have 2 choices. Either you re-evaluate your goals and decide to make new ones since the ones you had are now out of reach or you find a way to lower/hurdle the wall blocking your path. Maybe you take longer to go to school. Maybe you go in the same field but with a different career focus. Maybe you dream a new dream. You are just reaching this point younger than most people because on your particular situation. That's kind of a blessing in disguise. You don't have to wait till mid-life for you mid-life crisis.


The meds dont make me feel like Im getting anywhere with this disease. They got me back to walking. But what good is that when your too tired to
want to walk
Try measuring your accomplishments in different ways. Using your analogy - you can't expect yourself to walk or run or swim again so fast when your body was crippled. It's only just beginning to learn how to re-program itself with your meds and how to properly communicate with your brain to do the things you want. Everything takes time. The butterfly doesn't learn to fly when it's first born as a caterpillar and it won't ever fly if you break it from it's caccoon too fast. You are that caterpiller and you are so darned close to being your butterfly. Have patience. I know that's a hard thing, but I promise that one day you will be glad for this time and for the person who it had/is currently/ shaping you to be.

Gizmo
05-24-2011, 05:48 PM
Ritzbit,
I care, too, and don't want you to give up on yourself. You remind me so much of my precious daughter, as your lives are running parallel courses right now. She struggles with dreams that no longer seem realistic and is so tired that everything is hard. Sandy has offered you more wisdom than I have to give tonight, and it is good advice for all of us. Being 18, newly graduated from high school is tough for healthy kids. You've got extra challenges that are hard for others to understand. I'm rooting for you, and it sounds like lots of other people are, too. Make sure you are telling the people at home how sad you are so that you get help if you need it.

rob
05-24-2011, 06:31 PM
Ritzbit,

I understand your feelings of not having anything to look forward to. Being 18 and moving on in the world is hard enough for a healthy person. It's even harder for people like us, people with this thing called Lupus.

I realize that you may have already read a bit of my story, but I'm going to bring up the part that's relevant to you and what you are facing right now. Not long after my SLE diagnosis I decided that my life no longer meant anything, that it wasn't worth living anymore. I nearly died when I made my attempt. I should be dead, as I overdosed and then decided to turn my car into the path of an oncoming truck.

After nearly a year of recovering, I was OK again, except for the fact that I still had Lupus. I decided that after all of the loss and heartbreak, that life was still worth living. Since then, I found out that I also have MS, as well as a nasty case of Trigeminal Neuralgia to deal with. However, despite all of these damn autoimmune disorders, I have a wonderful life. Since the day I tried to end it all, I have met the most wonderful lady, I have made new friends and have seen the most beautiful sights, I'm even learning how to drive a race car-something I've dreamed of doing since I was just a little kid. If I had died that awful day, I would have missed out on the most amazing parts of my life.

What I'm trying to tell you, is that there is hope, happiness, and the real possibility of a good life after the diagnosis. I am living proof of this. You are young, you are intelligent, and you are incredibly talented. Your poetry and photography are testaments to these facts. You can do this. You can learn to live with this, and you can be happy despite Lupus. It's not easy-you already know that. I just want you to know that despite it all, you can have a great life.

Don't give up,

Rob

tgal
05-24-2011, 07:05 PM
Ritzbit,

I understand your feelings of not having anything to look forward to. Being 18 and moving on in the world is hard enough for a healthy person. It's even harder for people like us, people with this thing called Lupus.

I realize that you may have already read a bit of my story, but I'm going to bring up the part that's relevant to you and what you are facing right now. Not long after my SLE diagnosis I decided that my life no longer meant anything, that it wasn't worth living anymore. I nearly died when I made my attempt. I should be dead, as I overdosed and then decided to turn my car into the path of an oncoming truck.

After nearly a year of recovering, I was OK again, except for the fact that I still had Lupus. I decided that after all of the loss and heartbreak, that life was still worth living. Since then, I found out that I also have MS, as well as a nasty case of Trigeminal Neuralgia to deal with. However, despite all of these damn autoimmune disorders, I have a wonderful life. Since the day I tried to end it all, I have met the most wonderful lady, I have made new friends and have seen the most beautiful sights, I'm even learning how to drive a race car-something I've dreamed of doing since I was just a little kid. If I had died that awful day, I would have missed out on the most amazing parts of my life.

What I'm trying to tell you, is that there is hope, happiness, and the real possibility of a good life after the diagnosis. I am living proof of this. You are young, you are intelligent, and you are incredibly talented. Your poetry and photography are testaments to these facts. You can do this. You can learn to live with this, and you can be happy despite Lupus. It's not easy-you already know that. I just want you to know that despite it all, you can have a great life.

Don't give up,

Rob

You forgot to tell Ritz one important thing... Had your attempt been successful many, many people would have shared in that loss because we wouldn't have had a chance to become your friends. Same with Ritz. I know having AI diseases suck but this place wouldn't have been the same without either of you

steve.b
05-25-2011, 03:09 AM
it may sound silly but......................


i need my ritz.

please remember life is what you make it,
not what it tries to make of you.

ritzbit
05-25-2011, 09:30 AM
I read a few of these posts yesterday and couldnt think of what to say. If you guys cant tell I've been slightly an emotional wreck, though I dont want anyone to really know that (friends and family). Im supposed to be all happy and excited about graduating, which I am, but at the same time I feel like Im trying to do too much right now and everyone wants me to get all this stuff done. You guys are awesome. You made me cry...lol Everyone here is like my second family. Dont know what I'd do without you.

tgal
05-25-2011, 09:43 AM
I get teary eyed often when I read posts here. My favorite thing is that when I am down there is always someone there to life my spirits and when my spirits are good I get to help lift the spirits of others. It is what we do here and it is what you are a huge part of. Right now you need us. Soon you will be better and others will need you. It's how it works and it is why we love each other so much

SandyR
05-26-2011, 06:40 AM
Ritz,

I caught part of the Oprah final episode yesterday and didn't get to see everything, but the one thing I did catch I think I saw to tell you. She said (and I'm paraphrasing) "Everyone on this planet has one thing in common. They want to feel like they matter. You matter. You, as an individual person, matter. The very fact that you are here and the significance of being born is reason enough to know that you matter. You matter."

rob
05-26-2011, 10:00 AM
I read a few of these posts yesterday and couldnt think of what to say. If you guys cant tell I've been slightly an emotional wreck, though I dont want anyone to really know that (friends and family). Im supposed to be all happy and excited about graduating, which I am, but at the same time I feel like Im trying to do too much right now and everyone wants me to get all this stuff done. You guys are awesome. You made me cry...lol Everyone here is like my second family. Dont know what I'd do without you.

I think you're doing pretty well despite it all. Just keep your focus on going straight ahead, and keep on moving. You are stronger and more courageous than you know, and you are tougher than I ever was when I was your age.

Rob

ritzbit
05-29-2011, 10:20 AM
Pharmacy is making it hard for me to be good about my meds. They are out of my medrol, which I need more of tomorrow. Its a holiday weekend god only knows when they'll get more.

Gizmo
05-29-2011, 12:14 PM
Can they get it from another pharmacy or find a pharmacy that has it in stock and send you there? My husband routinely does that for his customers.

Peridot20_Gem
05-29-2011, 01:41 PM
Gizmo,

Your right in what you say concerning ritzbit's medication and what your hubby does.

I take my prescription to the same place monthly and if they're unable to get my stuff straight away i take my prescription off them and take it to another around the corner.

ritzbit
05-29-2011, 06:14 PM
I know that I always have to call my patch in early because they have to order it but never had a problem with anything else. I was told they were on a huge back order and they would call my doctor about it and acted like there was no way they could get it. I called the on call doctor for the weekend to ask them what to do about it, they said they had no knowledge of a big back order of medrol and told me to take my prednisone until I get more, but prednisone didnt work last time I used it. I think I've been forgetting my meds alot more lately, I've been dead tired and no one will let me sleep. I have another rash on my leg too. Always full of problems lately.

Gizmo
05-29-2011, 07:44 PM
Ritz, don't skip your steroids! After you have been on them for more than about 10 days, your adrenal glands get lazy and quit making natural steroids. That's why the doctors want you to taper down, not just stop taking them. If you are sick or hurt it is even MORE important that you remember to take them. My doctor has me double mine for a few days if I am sick, because that's what your body would normally do in response to illness. If your adrenal glands aren't making natural steroids and you don't take your meds, you could go into an adrenal crisis - which can be life threatening. My daughter has adrenal insufficiency and has to carry an emergency supply of injectable steroids in case she gets hurt.

I didn't know they make a Medrol patch. How often do you change it? Do you think it works better than prednisone for you? Is it hard to remember to change it? Do you have fewer side effects than with oral prednisone?

rob
05-29-2011, 08:03 PM
Ritz, don't skip your steroids! After you have been on them for more than about 10 days, your adrenal glands get lazy and quit making natural steroids. That's why the doctors want you to taper down, not just stop taking them. If you are sick or hurt it is even MORE important that you remember to take them. My doctor has me double mine for a few days if I am sick, because that's what your body would normally do in response to illness. If your adrenal glands aren't making natural steroids and you don't take your meds, you could go into an adrenal crisis - which can be life threatening. My daughter has adrenal insufficiency and has to carry an emergency supply of injectable steroids in case she gets hurt.

I didn't know they make a Medrol patch. How often do you change it? Do you think it works better than prednisone for you? Is it hard to remember to change it? Do you have fewer side effects than with oral prednisone?

Gizmo is right. Don't skip your steroids Ritz.

lovedbyHim
05-30-2011, 05:12 AM
I am on 7 scripts and 5 different vitamins. I think my main reason for hating the meds is that it is a reminder that I am sick. I like the candy idea! I buy myself earrings every time I have to get bloodwork. Lol It just sweetens the moment.

ritzbit
05-30-2011, 07:55 AM
I'm not intentionally not taking them? I clearly said I cant get them anywhere. And the patch isn't medrol its nitroglycerin. I know I cant just stop thats why I'm mad I cant get it. Prednisone doesnt work for me so taking it will be kind of pointless.

Gizmo
05-30-2011, 07:59 AM
I'm not intentionally not taking them? I clearly said I cant get them anywhere. And the patch isn't medrol its nitroglycerin. I know I cant just stop thats why I'm mad I cant get it. Prednisone doesnt work for me so taking it will be kind of pointless.

Sorry Ritz, I misunderstood. Medrol sounds like Solumedrol, and since the doc told you to take prednisone instead, I thought it was a steroid. My bad.

ritzbit
06-08-2011, 08:40 AM
Finally got my meds from some tiny pharmacy that knew there was going to be a huge shortage. Has anyone else heard of this national shortage of medrol? My doctor thinks Im on crack or something when I told her we had to keep calling places to find some. I dont see how such a widely used steriod could have that big of a shortage. And also my rheumy told me I can go down to 4mg!!! YAY

SandyR
06-08-2011, 11:11 AM
I found some information through a link off the webmd lupus forum. Apparantly there was a recall (http://www.cardinal.com/mps/wcm/connect/01ddd70046571da18918eb690e45094f/Methylprednisolone+communication+3.30.11.pdf?MOD=A JPERES&CACHEID=01ddd70046571da18918eb690e45094f)in March by the manufacturer that is affecting Medrol and other steriod based drugs.

ritzbit
06-08-2011, 11:17 AM
Really? Well Im glad Im not crazy then because the 2 rheumy I talked to about it acted like I was because "I would have heard about that Im sure" ha maybe they should keep tabs on whats going on with one of the most common meds they prescribe! What if there was a shortage of plaquenil? Im sure they would find out about that real quick.

Peridot20_Gem
06-13-2011, 11:08 AM
Ritzbit,

Glad you managed to get your meds mate to take and it's funny how several of you are mentioning shortness of meds because before xmas it was on the news about epileptic's and other people with serious illnesses adapting to cheaper tablets, as the company's in the uk are making more profit by selling abroad instead.
I hope it never comes to it because my system could'nt go through change again plus you don't know what these other cheaper drugs do.

ritzbit
06-13-2011, 12:24 PM
Im on the generic cheaper version of most of my pills, I think in part because my insurance covers them. I've never noticed much of a difference. Not having your meds sucks though, then it sucks more when you call to ask for help and they basically tell you your wrong when your not.

Peridot20_Gem
06-13-2011, 03:34 PM
I always go to the same chemist but i always have to pick my prescription back up the next day as they phone about for certain drugs and sometimes i do get the cheaper ones and like yourself never found no difference, the only tablet i've noticed which lacks something is the valium it does'nt hit you so strong.

Oh i'd be in a right mess without mine ritz been on them to long and you know the saying mate (the people are always wrong) some can make you look a right idiot.

I'm just pleased you've got them and your system will be ok. xxx

ritzbit
08-16-2011, 03:48 PM
Guys...I cant do all this. I try to get involved on this forum and try to read up on lupus related things everyday but I cant do it. I cant take care of myself. I cant take my pills. I cant admit that Im that person that is always going to be the one explaining the 9-12 pills I take everyday. I can accept lupus, what it does, what it means, but I cant accept that I have it. I try to emerse myself with it to make it seem like I have a handle on it. I dont even know if that makes sense. I have been doing this for 2 flipping years and still cant take my pills. Apparently my doc ran a test to see if I was and found out I wasnt and said that I have "active inflammation". A nurse just called and said she wants to see me this week and asked if I want to make an appointment. I dont want to. I dont want everyone to know I did it again I dont want everyone to think Im doing this to myself. I've been trying to work through some of this with my therapist but I've made like no improvements. I dont want to see my mom when she finds out I stopped taking my pills again.....I just want to sweep it under the rug. I shouldnt have to ddeal with this I shouldnt have to have lupus. No one should. This is MY LIFE. I cant have this in it. I just cant accept its me. I think of lupus outside of myself, and have been told thats bad because its never going to let me accept that I have it. I've just been so stressed and down lately. I dont want to deal with this. I know that should make me WANT to take my pills but Im ass backwards... I just want to go away for awhile. I dont want to go back to my rheum. I dont want to start college. I want to go AWAY.

Elo
08-16-2011, 04:39 PM
I try to get involved on this forum and try to read up on lupus related things everyday but I cant do it. I cant take care of myself. I cant take my pills. I cant admit that Im that person that is always going to be the one explaining the 9-12 pills I take everyday. I can accept lupus, what it does, what it means, but I cant accept that I have it. I try to emerse myself with it to make it seem like I have a handle on it.

Have you tried the opposite?
Look, when I look at the whole big picture, I get scared sh**less. I really do. And you have it so much worse, I can't even imagine.
What helps me, is that I...well, I don't think about it. And maybe that's a bad thing, but it's how i cope right now. I don't think every minute "oh, I have lupus", and I don't want to know or research every little thing that Lupus can do to you. What I do, is I just...well, focus on me. On how I feel at this minute. At what I need to do to get through today. I think maybe you're trying to swallow too much at the moment. You're thinking of your whole entire life, of Lupus, of your sickness, of what you want... maybe just try taking it one small bite at a time. Wake up in the morning, and think, oh, I feel like this. So this is what I need to do today.
Am I feeling weak? Okay, I should take my cane with me. I'll take my meds so I have an awesome day.
I don't know...I wish there was something I could tell you to make it better, to help you get through each day. But all I can think of to say is just to focus on yourself, not the sickness.

Now, as for the whole meds thing... I'm sorry, I can't understand. I haven't been in that space - I mean, to me, taking pills was something "Grownups" did. My mother is a big health person, so ever since I can remember, she's taken vitamins and supplements every day. And there was nothing wrong with that to me. In fact, at several points when I was a kid, I wanted to take them too, so I could be big like her! I even had (and this is kind of hilarious, when you think about it), a bottle cap that I would put my pills in, to pretend like I had a *real* pill case.
You don't need to be ashamed. Feeling shame isn't going to help you with this. Your family loves you, and they don't understand the space that you're in. And that's fine - they just need to realize that they don't understand it, and admit it.
If you can change the way you feel about your pills, maybe just try to see it as more of a morning routine. Oh, I take my pills, brush my teeth, do my hair... and then at night - Oh, once again, I take my pills, brush my teeth, wash my face, crawl into my super comfy jammies (Which, by the way, if you dont have any, you simply MUST get some), and I go to bed.
I mean, little kids dont want to brush their teeth. But they do. First because they're told they need to, and then, as they age, because it becomes part of their routine, and because they know that its better for them that they do.
So...yeah..thats just my insight. Try to simplify things. Meds aren't your livelihood, they're just part of your morning routine. You dont have to think about having Lupus everyday, just think about how you feel and what you want and need to do to feel better.

*Sigh* I really wish I could help you more. Maybe we could skype sometime and I could show you my stupid cat. (That's not an insult, he's just extremely stupid- its rather cute). I don't know if you have many people in your life who are ill as you are, that you can actually talk to. Maybe actually talking and seeing someone would help a little more than talking online. That always helped me when I felt like crap - talking to a friend on the phone and ranting together. But that's just me.

And... maybe... have you thought about taking a year off from college? Just, kind of living on your own, coming to terms with who you are? Every teen needs to do that, even ones who aren't as awesome and dealing with as much as you.

Another thing...when you just want to get away, perhaps you can try to get out and do something artistic that takes you away from the world. Reading a book, watching a movie, drawing, writing, photography. Something that takes you out of your present situation and gives your mind a little bit of a breather.
Anyways.
I really, really wish I could help more. That there was something I could say to make it all better. That this post actually made any sense.
*Sigh* One day at a time though, right? I hope you feel less overwhelmed soon.

--Edit: My Skype name is superagentbunny .
Yeah, I know.

nicolehinkel
08-16-2011, 07:16 PM
Life truly is what you make of it. For years I was on bipolar medication and all 6 times I was hospitalized for trying to kill myself I was on meds, so I got to a point I didn't want to take my meds, I figured why bother, I am still going to suffer. Then I met my husband and he would get me my pills every day and every night and for a while until I took them for me I would take them for him because if I am suffering I know he is suffering and I love him so much I don't want him to suffer. Last year I had "energy therapy" and it resolved a lot of issues that I had and I don't need the bipolar medication and with just being diagnosed with Lupus I dread the fact that I will have to take medication again every day of my life, but I look at the great things in my life and my wonderful husband and I know when I get the medication I am going to take it and not dread it regardless of how it makes me feel because it will make me have better days and not only do I want that for me I want that for my husband which keeps me going. I know I should always do it for me but when I feel really bad it's hard to focus on me so I focus on him and it gets me through.

steve.b
08-16-2011, 09:00 PM
do not look past today.





i had trouble with the big picture.
so i just live 1 day at a time.
before lupus, i did quite a few different jobs.
one of them was a boss for a retail chain store.
my store would have a budget of just over 1 million dollars a month.
to do that i had to look at the big picture every day.

i was not scared of the big numbers.
but lupus is different.
it is scarey and real.

i could not handle it, and you are not as worldly experienced as i am.
so i doubt you would handle it properly either.

if you know you cannot handle it, find another solution.

for me the solution is 1 day at a time.

for you it is .........................

elo's idea works for her.
nicole's idea works for nicole.
my idea works for me
find your solution

taking medication is a must.
breathing is a must
the rest is optional.

lovedbyHim
08-17-2011, 12:17 AM
I have to live moment by moment. It is a wonderful way to live actually. When I am very sick, if I stay I'm the moment, I am able to appreciate the little things, like a phone call from a dear friend. I dream and make plans, but they must be positive, but when the "what its" come in it pulls me down. Pain & fatigue can suck me in to the negative thinking and so moment by moment I must stay.

ritzbit
08-17-2011, 04:32 AM
I dont know what works for me...because what did WORK isnt what I like doing. When my pills are out and upstairs and I take them in front of everyone. I take them more often. However, I hate taking my pills in front of people. BUT I know I'll do it. I know I make no sense. I never do. This all caused a big fight with my boyfriend last night. And I woke up again today with yet another headache. sigh.

giggle
08-17-2011, 04:52 AM
ritz is really young and this is why its going to be super hard for her at the moment... SUPER hard. At this time in a persons life, they will only be focusing on the big picture, its what everyone is telling them to do. To plan where their life is taking them.
I understand... for years I neglected my lupus and ended up in a worse position. Right now I am sick to death of what ever this other thing is... I just want to give up and pretend I am normal. But I wonder where I will be in a few years time if I did that.

You need a break, maybe you shouldnt go straight to college? Maybe you should get a part time job and work for a year before heading to college? I know it helped my sister get her life in order. She had chronic fatigue syndrome and having a part time job helped her get some independence and start to understand how her life would begin to work as she eased into the real world... so she could make a clear decision about what she should study and what career path she should take. She worked as a receptionist and did a child care course part time. She has been working part time in child care for the past two years and is now moving into a psychology diploma. It was a really nice, gradual transformation for her and I think moving along those lines might make your transition easier as well, instead of being thrown right into study and right into this enormous pressure.

I hope that made sense, I have been so scattered lately that following forums is really difficult.

ritzbit
08-17-2011, 05:51 AM
Thats what I mean exactly! Im on a pre-med track so I have to keep thinking this semester Im doing this and next semester Im doing that and over the summer Im doing this so that this time next year I'll ALMOST be ready for my MCAT. I have to think of everything in the grand scheme of things. Its like I dont care so much what not taking my pills will do right now because Im too tired to go take them, I'll take them tomorrow. And then I do the same thing again. And then my pills just look so disgusting...I'll feel ok for awhile but I KNOW its going to make me feel like crap. Sometimes I too nauseous or I cant get them down good and gag on them. I try to tell my doctor these things so she knows its not completely intentional that Im not taking them. I just go through these cycles. Every couple months. I'll be good for a few months and bad for a few months. I dunno. Im waiting for my mom to go find something else to do so I can call the doctors office and let them know Im not coming if its just to wait for hours to hear her say "take your pills" because Im already trying. I TRIED using my pill box again; the sight of how many pills I take in a week horrified me. I TRIED to start adding my meds back in one at a time; I'd forget which ones I already took. UGH.

Gizmo
08-17-2011, 09:28 AM
Ritz, I think Giggle made a really good suggestion. It sounds like you know that you're not ready to start your pre-med program, and there is no way you will get through it if you're lupus isn't under control. I went to work in a doctor's office when I was in high school and it totally changed how I felt about myself and my place in the world. Maybe you could find a part time job in the medical field to get your feet wet and take some pressure off.

I started out pre-med and it was really hard to admit to myself that I wasn't ready to make that kind of a commitment. Once I did, it felt like the weight of the world was off my shoulders. I went on to get a degree in nursing instead and found that was a much better fit. There are SO many choices in healthcare, and a lot of them don't require 8 years of college and 4 years of internship/residency. For me, wanting to be a doctor was kind of an ego thing - everyone expected so much of me that I felt that anything less was letting myself and other people down. Then I realized that the nurses and radiology tech's and the folks who draw blood all make a difference and are important. And their training doesn't require them to go hundreds of thousands of dollars into debt, or stay up for 48 hours straight, or take phone calls in the middle of their kid's birthday party.

Ultimately, Ritz, you have to be able to take care of yourself before you can even think about med school. I know you have grants for this year, and that your AP credits mean that you go straight into harder classes and that your family has expectations of you. All of that is really hard, but if you were my kid, I would encourage you to go part-time, or work part-time and let go of the pressure.

n.mac
08-17-2011, 03:47 PM
First of all you know how important it is to take your meds,and we all know how frustrating that can be when it can take weeks or months before you see improvement.

Having said that you seem pretty normal to me. Well normal for a 19 yr old girl anyway. My step daughter is 19 as well, and she has changed her majorseveral times. First she was enlisting in the airforce and was going to be either a pharmacist or a linguist/cryptologist.
At the last minute she changed her mind and started going to community college with the intention of becoming a meterologist,along the way she took a class to become a pharmacy tech,took and passed the state certification test and then realized how boring it would be to work all summer at Walgreens so she moved on.
Now she is going in the Il National Guard Reserves as an MP (all 110 pounds of her). After boot camp she is going to Western Il University majoring in Criminal Justice w/ a minor in homeland security.

She also had talked about taking some time off to travel but then worries about falling behind.

It is normal to be unsure of yourself and to second guess your decisions!

TAKE YOUR MEDS!

Wasn't it John Lennon who said Life is what happens when your making plans?