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Tootles
03-01-2009, 09:38 PM
Hello,

My name is Deb and I am 36 years old and found out I have lupus in June 2008. Tonight I am having a very hard time. I was sitting at my kitchen table with my meds filling my 4 a day one week pill sorter. It just became overwhelming, to see the huge bottles of medicine and have to sort them out every week. When is this going to end? I am 36 years old with the deluxe pill sorter and that does not even hold all of them. I am sorry to complain because I know so many of you have it worse than me, but I am just tired of this. Thank you very much for letting me vent to you, I do not have anyone to talk to about this. Not much understanding from anyone else and I have been letting it all bottle up without someone to talk to.

Thank you for letting me get this off my chest.

Deb

rob
03-01-2009, 10:20 PM
Hi Deb,

I didn't think I would need one of those pill sorting boxes until I was in my 60's or 70's. I'm 41 and have already worn out two of them. You open and close the lids enough, and they finally break off. I was 36 when I was diagnosed with SLE, where you are now. It's not fair. When does it end? It probably won't end anytime soon. The meds that help us keep our symptoms under control, can also have many side effects. And looking at the sheer number of pills we have to take every day can really make all this seem hopeless. Feelings of being overwhelmed, will happen. Lupus, meds, the lifestyle changes we have to endure, will take a toll. So many of us deal with this every day. Some days it's a nightmare, but, somedays you can turn the tables and kick Lupus and the meds in the butt by having a great day despite it all.

There's nothing wrong with feeling overwhelmed. This damn disease and all that goes with it can tear down the strongest of people. But you need to know that it will not always be this way. You can adjust your life, and learn a new normal. Five years ago, I was asked where I thought I would be when I was 40. I didn't answer because honestly, I thought I wouldn't be here. Yet, here I am. I have good days, and I have bad days. The point is I'm still here and life is still very much worth living despite Lupus, and all the things I've lost because of it. Deb, you are not alone. Please know that there is always hope, and that regardless of how terrible and dark things may seem right now, tomorrow is a new day. As unpredictable as Lupus is, tomorrow could just as easily be a good day as it could be a bad one, and there are lots of good days left for all of us here to enjoy. Have hope.

mountaindreamer
03-02-2009, 05:17 AM
hi deb,

welcome to a great group of people who are always available whenever needed. Yes, we suffer from "i hate taking meds syndrome". Sometimes I stand at the counter and just have to force myself to take the meds. It is a twice daily reminder of what i am fighting. My omega-e three pills will not fit into those little plastic containers, so i have decided to be creative/loonie with my med storage. I have taken a cloth bag, decorated it with various little trinkets, and keep my meds in it. My granddaugher enjoys adding stickers, etc to the bag. At least I get a small smile when digging the meds out.

just a crazy story on how i try to manage the small irritations.

again, welcome and hope you enjoy the family

Angel Oliver
03-02-2009, 06:06 AM
Just to say hello and welcome to this site. Im sorry to read how overwhelmed you feel, but we all understand you. Sending you gentle hugs and hope you come back here often so we can help make you feel a touch better.

love n gentle hugs
Angel.xxx

jenniferlynn
03-02-2009, 08:03 AM
Hi and welcome. I am new here too, but have had lupus since 2005. I am 32. I hate to take the medications - and actually have learned the hard way what can happen if you don't take them. I am in a horrible flare and have a long way to go to get out of it! Hopefully someday soon there will be a breakthrough and a medication will be found that can make our lives better and cut down on the number of pills we take.

sick n tired
03-02-2009, 10:14 AM
Hey Deb,

Feeling overwhelmed is understandable...I just want to offer you my support and hugs...gentle ones of course

{{{{{{<<<<HUGS>>>>}}}}}}

JennM
03-03-2009, 05:35 AM
Hi Deb, I'm 38 years old and was diagnosed with SLE in 2004, but denied having it and didn't start taking care of myself and going to doctor regularly until this past year. Part of the reason, I was in denial is because I felt, I can handle this without taking medication. Well for the past year and a half, my flares have become more frequent and severe, so I finally faced reality and got on meds. I can say, that I do feel better and I know there will be times when I will not feel good. Sometimes it is very overwhelming just worrying about when the next flare is coming. But at least there are medications that can help. Hang in there, we all understand how you feel. Take care.

Grime
03-03-2009, 11:00 AM
When I first got the word that I had Lupus I was down inside. Starting to feel sorry for myself. Then I went online to a forum board that I visit trying to figure out what to do about our little boat. The support I got was over whelming. The ones that didn't know about Lupus went on line to find more information. The member came back with suggestions on how to cover up, clothing, etc. Some even offered for us to move up to where the UV is not as high as here on the Texas coast. 99% of these people I have never met. They are now my extended family. If I get down and post there I know what will happen. They will get me over it with all types of suggestions.

My point is we may not know that we have a support group. All of a sudden we have one.

Deb any time you need to vent just email me. I don't know how much help I can be but I surely will listen. conagher60 at gmail.com

kducks
03-03-2009, 01:08 PM
Hi Deb,

Welcome to the boards! Sorry you had to find us in the first place, but I'm happy you have found it for support. It seems so overwhelming at first and you go through so many emotions, all I can tell you is it can get better. I was diagnosed 16 years ago and it did get better for me. The pill situation seems like so much at first but honestly, it just becomes routine after a while. I know I have to take these pills to make me feel better, for my body to work somewhat normally, so I just do it. Don't apologize for complaining, it's what we are all here for. It's hard when no one in our lives really understand, but there is people out there that do. Come talk to us, we understand.

Hugs,
Kim

Tootles
03-03-2009, 08:51 PM
Thank you very much to each one of you for the uplifting words. I guess I am going thru a grey time right now. It is so wonderful to find this website and to actually be able to communicate with people that are dealing with the same thing. People do not understand what this disease is like to live with on a daily basis, at least now I have a place to go where people actually understand and care!

Thanks again and I hope everyone is feeling good tonight!

Love, Deb

Faith
03-03-2009, 09:03 PM
Hi Deb and Welcome,

Don't laugh please. When on a short vacation; I use three pill boxes. I think it is normal to be overwhelmed and there would be something wrong if you weren't. I always have to triple check because I forget something.

I didn't want to add up my total number of meds because I didn't want to know. I have had to look into prescription assistance programs lately, and I added up the meds, toothpaste, eyelid cleaner, three types of eyedrops per day, creams (psorasis & lupus), Lupus, fibro, sjogrens, restless leg syndrome, Gerd meds, etc., and I actually cried. I was sad that my life has come to all these meds, creams, etc.

You are not alone, and if you ever need to talk we are all here for you. Welcome and take care. Take one day at a time.

God Bless,

Faith

Rastagirl
03-03-2009, 10:18 PM
Welcome!! I thought I posted here earlier.... Mmm. Can't keep my head on straight today.

Just wanted to say hello and let you know that the frustration with loads of meds is a very, very familiar one here. I remember at age 23, I was on 23 prescriptions and I thought it was going to be that way for the rest of my life. I cried many a tear over it. I used to have to force myself to take them and I even tried just stopping them one day. Yep, just like that I decided that enough was enough and I wasn't going to put up with it anymore. And boy did I pay the price...landed myself in the hospital for 2 weeks with that decision.

There are so many difficult things we must go through when our life changes with a diagnosis, and I think the whole 'multitude of pills' most of us have to endure is another one of them that screams 'out of control' to us. We feel like our lives are being controlled by this Lupus and by the many drugs that we must ingest in order to survive. I understand how frustrating it is. But I want to give you some hope...as things calmed down for me and I began to have longer and longer periods between flares, I slowly began to get off of some of the drugs. Yes, it definitely took some time. I wish it could have been quicker. But one by one they were eliminated. And each time one was stopped, I cheered in my heart. I began to look at the slow, steady progress and it gave me hope.

I've had Lupus since my teens, and although its taken some time, I am finally only on 4 prescriptions...and they are all very small doses. Do keep taking your meds, but don't give up the hope that one day you may find that you are taking a few less. Celebrate each success and keep going one day, one pill, at a time....and one day you may find that you don't need that huge pill sorter any longer.

Fondly,

Lori :)

p.s. When I was typing '23 prescriptions' my hand slipped on the zeros and it ended up 23,000 prescriptions. How awful would that be? That makes 23 sound like a walk in the park. :)

DrinkofWtr
03-05-2009, 05:17 PM
I log my meds in a notebook, then I check them off as I take them throughout the day. I guess this is similar to what hospitals do, although I have never worked in one.

It used to be very confusing for me to take all my meds., but I am getting better at it through time. That reminds me, I need to go take some meds right now. Bye!

tasha
03-15-2009, 12:36 AM
i'm only 23 and have to have a pill sorter and go through this same routine as the rest of you. it's depressing! but you know what? i NEVER forget to take my vitamins because of it! which is something i brag to my friends about. they always complain about how they want to take fish oil and calcium and all these vitamins and they just never remember. because i HAVE to take all these meds, i never forget to take my vitamins :)

just trying to point out a silver lining!

i do understand the pain though. i actually just filled up my pill container a few minutes ago for the next week. every week when i do it i think about how much time it takes just to sort through all the medication that my poor body needs in order to function properly and it makes me grumpy :(

tiggerlishus - Heidi
03-15-2009, 03:00 AM
Hi debs and welcome on board!! thanks to this thread i actually remembered to take them lol it can become a bit dawnting but lori thanks you have given me hope i'm on at least 20 tablets a day at mo :wacko: i now look forward to the day when that lowers!!
debs i been here a few weeks and the comfort adn knowledge i have gain already is overwelming in its self in a good a way!! :)

karenboss
03-16-2009, 02:26 PM
I'm new to all of this so mostly I'm thinking from what I've read, not my experience, but isn't it possible for Lupus to go into spontanious remission? That can last for years? I mean it's a hope isn't it - some other diseases just have one prognosis.

hang in there & hope you feel better soon.

tasha
03-16-2009, 10:40 PM
I'm new to all of this so mostly I'm thinking from what I've read, not my experience, but isn't it possible for Lupus to go into spontanious remission? That can last for years? I mean it's a hope isn't it - some other diseases just have one prognosis.

hang in there & hope you feel better soon.

yes! and remission is something we all hope to achieve!

ashleybaby715
03-17-2009, 04:44 AM
your not alone thats forsure lol.

im only sixteen and i already take 8 pills a day monday-saturday and i take 14 on sundays! [thanks to the methotrexate]

i always laugh because i feel like a grandma with a pill box... but it does make things easier, i will admit that lol :)

lupus is tough, but you gotta just be strong ! that all we can do!
...well that and hope they find a cure ASAP!!!

i wish you the best, and feel free to message me anytime!! :laugh:

Mary Jane
03-17-2009, 11:55 PM
Yep...I have two pill boxes...one for morning and one for evening. I believe I take 11 pills a day. At age 46, it just doesn't seem right. But it is what it is...and we do what we do to keep the beast under control. Welcome to the sight, and hang in there...your not alone.:wacko: