- I'm 15 and my mom has had IC with Adrenal insufficiency and Addison's Disease on top of it for 11 years. She's in chronic pain a lot and I feel totally out of control and helpless. I've hit my breaking point and I feel like I can't talk to anyone that really understands. (I'm also the only child) This is a last resort.. PLEASE email me @ email@example.com I desperately need help. :(
I was diagnosed with Addison's, also known as adrenal insufficiency, in 2002. It was a very challenging time for me and I thought I was going to die because I was that sick. The medications I was placed on while in the hospital were life altering - literally, and not in a good way. What this means is the body isn't able to manufacture cortisol on its own which leads to other symptoms. In my case it was syncope, hypokalemia (low potassium), hypocalcemia (low calcium). I spent two unpleasant weeks in the hospital most of which was without a diagnosis.
I am better now and do not take any of the meds I was once prescribed. The reason for that is I sought a second opinion from another endocrinologist. She got me off of the garbage drugs the other doctor had me on. Florinef and Decodron nearly destroyed my body chemistry. I suffered greatly on them. My body didn't know day from night... cold to hot to cold again in the middle of summer... I had trouble walking because standing up made me horribly dizzy. I had trouble eating, too. Addison's does that. You forget to eat because your brain isn't getting any signals that you are hungry. I never felt hungry and I had memory issues as well. I couldn't remember to eat and I couldn't eat solid food. This illness did a number on me and my body.
I am so much better today. My bones are at issue now but that can be dealt with. I've had one hip replacement and holding off on the other hip for now. I work part-time and glad to be out of the house. I hurt a lot but I can deal with pain. I am alive and well and that is what I choose to believe and that is how I operate in life. My second endocrinologist believes my condition was "medication" induced. It was a long, slow recovery and I'm not 100% and that is okay. I live like I'm 100% okay and that is all that matters to me.
Remember that you need to take care of yourself and your needs. Your mother's needs are not for you to fix but for you to give that 100% unconditional love and to receive it as it comes. The more I do for others the better I feel, too. I don't know if you are a person of faith but when I don't know what to do... I pray for guidance and direction. You don't need to be religious to pray... you need a humble heart and the willingness to step outside of yourself to ask for help... God will meet you right where you are.
I too suffer from interstitial cystitis, and chronic pain. I've lived with the chronic pain for almost 30 years after having to have 13+ spinal surgeries. However, about 5 years ago I started getting this horrible pain in my gut. I'd never had this kind of pain so I saw at least 5 doctors, who were no help whatsoever, until I finally saw a great gastrointestinal doctor, who for the first time mentioned IC, I'd never heard of it, but everything he said fit me to a tee. I now take medication to control it, I still have flare ups, but for now things have been really good.
As for you feeling helpless, that's normal. People who live in pain live in their own hell, you can't feel your mom's pain and therefore it's hard to imagine what she's going through. The best thing you can do to help is just let her know you love her and how much you care. We all have loved ones who feel helpless and that sometimes brings out misdirected anger. I know there are quite a few support group for caretakers of those in pain, you might want to check those out too. God Bless you and your mother, it's tough watching a loved one go through pain.
sounds like you have your hands full pal.
if you really wan't to talk then i will be all ears my name tez will be
in touch .just saying not always too good myself may be the next day
when i get back to you.just hang in there pal life is not what it seams to be
it kicks you even harder when you are down then stamps on you,,,
I am also an IC sufferer with Addison's disease, as well as Fibromyalgia and GI issues. What I can tell you is that this is a very hard road, both for your Mum and you. My family has supported me during the worst of it, and that has made a real difference. Also, my Mum has health issues and I KNOW how hard it is to watch someone you love suffer, as well as being responsible for their well being. Having said this, you are still a child and entitled to your own life, enjoyment of, etc.
There are some excellent on-line support groups for IC sufferers (IC Hope, ICN, IC Help), and some good books about natural remedies by Catherine M. Simone, and perhaps you can suggest to your Mum that she start accessing them so you can get a break from the emotional demands of it all. When I was at my lowest point health-wise, the women on these forums provided a ton of support, and I was able to talk to people who truly understood what I was going through and this meant I didn't have to rely as much on family/friends for this type of support.
Is your Dad is the picture? If not, perhaps you can speak with an aunt or family friend about getting more support for you and your Mum. Counseling, home support for your Mum, etc., -- basically, anything anyone can help you access.
Your Mum is probably pretty near her breaking point, as well (I certainly have been), and maybe things need to change in your household.
What, specifically, are the things causing you the most stress? Think about this. Are you having to assume more adult roles in the household. like cooking and cleaning? Is your family suffering financially? Is it hard for you to watch your Mum suffer like this? Let me know, if you'd like, and maybe I can help with some suggestions for services or resources to lighten your load.
Another thing is that while these online supports are great, you are still a child (though I know you don't feel like it!), and need some support from the people in your life in a more direct and immediate way.
All the best.
I am so glad that you're able to get some of your feelings out in the open here, and that it helped your Mum see that you're struggling. I don't think that you should worry about talking to your Dad. You're in this as much as he is, and you guys should be able to talk. They might just assume that you're fine because they are so overwhelmed and don't quite see things too clearly right now. Definitely speak up in a loving, compassionate, and open way if it's possible. While some people don't see it this way, disability and illness IS a family affair. I think that you should suggest family counseling. I know that money can be tight when there's a sick family member, but there are services available (at least where I live).
This piece of advice is really important -- stay away from drugs and alcohol to cope with your feelings. You need to take care of yourself and study hard so that you can have a good life when you get older. I know that every grown-up says this, but they do for a reason, and it's usually because they wish they could go back in time and change what or how they did things when they didn't know better.
Get involved in extra-curricular activities and sports so that you get some positive time away from your home, and a break from the stress. If there's a Boys and Girls Club in your area, you can always hang out there and it is a safe, healthy, and fun place to be with some great activities and other kids your age.
Remember that you're entitled to your own life, and also allowed to express your feelings while learning to navigate it.
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