It's just getting so overwhelming.

• By Beth75
• Posted October 9, 2008 at 4:34 pm
• Report post

Hi P,

To be so young and dealing with this has got to be very difficult. I cannot even imagine. I would highly recommend seeking therapy, there might be something free you could go to. No one can know what you feel until they walk in your shoes.

I went to therapy a few years ago to help myself deal with my mother's mental illness and becoming her legal guardian and all that goes with it. I cannot tell you how much better I felt going, it was a place purely for me to vent all of my feelings of frusteration, rage, sadness etc.

There is also a book called, Coping with Prednisone, you can order at Amazon for like $13. It helped me realize that a lot of what I was going through emotionally was b/c of pred.

Please take care and I wish you all my best.

Beth

• Reply

• By Gayla1
• Posted October 10, 2008 at 12:36 am
• Report post

I have diabetes, stage 3 kidney disease, had intestinal probs for 2 years, and a stroke last December. I naturopathic physician told me once, this too will pass.
It's actually a small amount of time in the scheme of things of the time you will be on this earth. And she was right. At times I thought it was forever. But bittle by little this improved, then that, then something else. One day you find things are pretty good overall. Find something good in each day and hold on to it will change. Don't give up.
Gayla1

• Reply

• By Drkevorkian
• Posted October 10, 2008 at 3:45 am
• Report post

Just be positive!

I´ve NS for more than 30 years and I know that the path isn´t easy. Don´t try to hide your disease from your friends. I did it for more than 15 years and i felt overwhelmed most of the time, but when I started to talk about my disease with my friends I felt very reliefed and my friends started to be more comphreensive and helped me a lot to go through this disease.

Small tips: Try to get extra activities outside, like swimming, soccer, tennis that will help you to "forget" your condition and consequently your head will be more cleanner.

Avoid eating red meat and diaries, that will help you boost your immune system.

Don´t worry about your parents. People have different ways to show their emotions but parents will never give up on you. They are your best friends and whatever you do they will never stop loving you!

Helder

• Reply

• By andisc40
• Posted October 11, 2008 at 8:42 am
• Report post

Thank God you at least have found this site to vent and tell how you really feel. I think most of us want to try to keep as normal of a life as possible. When you are newly diagnosed, you figure you'll just beat it, then the meds and the disease kicks in and you start to wonder. I know losing control of what my body decides it is going to do was devastating. I sometimes wonder what is normal--is this the new normal? I would hate to think so. My heart goes out to you being eighteen and having to deal with this. I have a son your age and can't imagine him having to go through what we are all suffering from. He has however had to deal with an autistic spectrum disorder his whole life. Talk about coping skills. With support of those in your family and when you are ready to share with your friends--you still have those on this site . I have found that getting it out it helpful--and this is where I can say how I feel without being weak. Try to stay strong--I know I have good days and bad days --and just wanting the good to outnumber the bad.

It is okay to be tired of being sick--that is NORMAL!!
Keep fighting one day at a time. I am hear to listen as I am sure others are as well

Andrea

• Reply

• By KateG
• Posted October 12, 2008 at 11:55 am
• Report post

i have to reply because of your last few words including "shame". where does the shame come in ? you didn't do this. every reaction you have is valuable and real and truthful. please tell your friends. they really will respond positively. and give you support. and keep writing here. kate.

• Reply

• By Pmorris
• Posted October 12, 2008 at 1:58 pm
• Report post

I thank you all. Im not hiding it from my friends. They were the ones that were there with me when I had it and didnt have a clue what was going on. But I dont have that many friends, Im very selective on who I call 'Friends'. Im hiding it from the rest of the world. There was only one other case like this in my city and that man passed away in 2000. Going around a university with everyone knowing my problems will only make it harder on me. I know how people react to the out of the norm here... Ive been here for most of my life. But it does help me to know that people with problems like mine are here to listen. I truely thank you all.

• Reply

• By szaluski
• Posted October 12, 2008 at 9:20 pm
• Report post

I have a 21 yr old with FSGS, was fine all her life until 3 yrs ago. Hang in there, it sucks but you can do it. I do not now where you live, but in NY my daughter can go to school part time and still be consider full time to get state and fed aid. Also they can give extra time etc. Look into it at your collage. You can miss classes with out getting in trouble. Your hospital or collage ask about help with medical payments, you don't know until you ask.
My heart goes out to you and your parents. I wish I could take her FSGS for her, be tough, cry then get up and do the best you can, God bless, Stephanie's mom

• Reply

• By SmileGodLovesYou
• Posted October 12, 2008 at 11:28 pm
• Report post

Get some hand cleaner to carry around in your backpack and continue being social. Try to get more sleep (that's part of the new normal). Try to concentrate on making today worthwhile...
We like to say (after 2 1/2 years of this) that we are making lemonade from the lemons. It is tough to have an illness with no concrete answers. It is tough to take the medicines. My daughter is 16 and had to get used to pills and later shots and recently dialysis. And we just took it one day at a time. I pray that God will give you some peace about your situation.

An idea about the fluid.... we raised the head of our daughter's bed so she didn't end up with so much fluid on her eyes. She found clothes to hide the fluid on her abdomen. Really, people found the dents on her arm kind of interesting. I think more people her age respected her for her positive attitude through the illness and she didn't get made fun of. When she feels worse, she just stays home.... maybe you could work out some independent studies for your college work for those sick days. So glad you found this site so you could vent. Our whole family had a few therapy sessions and it really was helpful. We definitely talk about this more with each other in the last year. And we have been totally honest.... no elephants in the middle of the room that nobody talks about.
God bless you

• Reply

• By ChristiL
• Posted October 28, 2008 at 7:20 am
• Report post

Hi there!

Just wanted to see how you are doing this week? I have Nephrotic Syndrome and Membranous Nephropathy. I can't imagine trying to go to college while getting this disease under control. I'm sure you are under a lot of pressure right now. Freshman year is tough enough! I was diagnosed 3 years ago and finally have a remission. I remember taking 23+ doses of meds a day. It felt like there was no end in sight. My neph kept telling me I couldn't see the forrest through the trees. I hate to admit it, but he was right. At the time, all I could think about was feeling miserable, dealing with people who didn't understand, feeling guilty about the financial burden I was placing on my family, and wondering if I would ever have my life back!

Well, I can't say my life is exactly what it was before I became ill. I'm not sure if I'll ever be superwoman again! But somehow, I am learning to live again with kidney disease and feeling a little better each day.

I know it's little comfort right now but I hear your pain and I understand the loneliness. Just remember you are not alone and don't be afraid to share your feelings. This forum is a great place to vent!

Hope this week is a little better!

All my best,

Christi

• Reply

• By pepper1
• Posted October 28, 2008 at 4:06 pm
• Report post

You can get a mini mate personnel air purifier that you wear around your neck to prevent you from getting sick from other people. I wear it on airplanes. Good luck

• Reply

• By MacLean
• Posted October 30, 2008 at 11:15 am
• Report post

I just joined this group a few weeks ago and am only now beginning to post. Your post struck a cord with me. When first diagnosed (nearly 8 years ago with MGN) I was so swollen I could not bend my legs. In the morning The swelling was in my eyes and it travelled down as the day continued. Very painful and made me miserable. Diurectics soon stopped that and in the meanwhile I wore support socks that sucked in my ankles. Pants were very good at covering all the rest. Winter is coming, good cover up time! Believe me when I say things will get better once your neph discovers what combination of drugs works for you. Good luck.

• Reply

• By Mari4510
• Posted October 30, 2008 at 11:49 am
• Report post

wow!!.. i totally completly understand!!!....with the only difference that ive been fighting for 3 yrs!...let me tell u that its refreshing to read that someone feels and is going through exactly what im going through!... im 20 ( on monday) and ive attempted to go to college twice!... ive failed most of my classes cuz my attendance level was very poor!..cuz i was always sick or too swollen to even put clotheing on that would hide my swelling!..... and most weekends i stay home cuz im embarased to show my face and body!.... its hard ..... but just know ur not alone!!

• Reply

• By caf132
• Posted April 14, 2009 at 12:08 pm
• Report post

Hi-let me start and tell you you definatly have a lot of your plate. Are you on dialysis yet?
My husband was diagnosed with MN back when my son was born 18 years ago. He started on dialysis three years ago and is now at the top of the kidney transplant list. it has been a long and arduous journey. Lots of daily meds and a lot of ups and downs.
After he started on peritoneal dialysis he was able to keep his swelling in check. the nice thing about PD is you can plan you life around it and have control at the same time.
don't give in to the stress. Take it one day at a time knowing things will get better.
You are young and can have a full life ahead of you. A lot of people have kidney disease. You have to remain strong. There were/are a lot of hard times for family members. The moods were often terrible. You give up a lot having the disease and having a family member have the disease. Life was never meant to be easy. You must deal with the cards you were given. Just be positive and have faith that life will get better.
God bless you!!!

• Reply

• By randipink
• Posted April 15, 2009 at 10:28 am
• Report post

Hi P, I hear you! It must be so frustrating for you. Being sick does impact your emotions in a great way. Dr's are good at dealing with the physical aspects of illness but not the mental part. Please go to the counseling center at your college/university. They can help with the mental piece. As a parent of a freshman in college too, I can assure you that your Dad will pay or do anything to help you. So please don't think about that. Your health is the most important concern.

Remember, our illness is just a part of us. It is not WHO we are. It maybe helpful to focus on the things in your life that you can control. Like your grades and your hope for the future.

What are you studying in school?

I don't have the same illness as you but I too had to deal with chronic illness and the impact it has on your emotions and your family. When I thought there was no hope, I remember feeling like I was so alone and in a dark hole that I couldn't get out of. I went to a wonderful therapist who helped me so much.

Life can be so wonderful and there is hope. Enjoy as much as you can and be present for every special moment.

Sue

• Reply

• By Nina372
• Posted April 15, 2009 at 12:39 pm
• Report post

HI Pmorris,

I emphasize with you! When I was reading what you wrote I felt like I was reading my own emotions.
I too am 18 and a first year college student just the other day I had to make the very hard choice to stop going to school until next semester.
I have Dysautonomia and it is effecting my organs, the other day I found out it finally got a hold of my kidneys!
my first thought - ''What first my nervous system then my heart, eyes, stomach and now my kidneys!''
Its hard to find friends that really understand what I am going through and realize that what I have is not as simple as the flu, the truth is I would rather have the flu everyday for the rest of my life then Dysautonomia.
I don't know how I can encourage you but it does help to know that you can come here and talk to people that are facing the same issues.
Hang in there. Opportunity knocks but tragedy kicks the door in!

• Reply

• By ddarling
• Posted April 16, 2009 at 12:25 pm
• Report post

Hi Pmorris,

You are definitely not alone. Seven months ago I was diagnosed with stage 4 kidney disease. About a month ago I was told I have peripheral vascular disease, or PAD. I'm devastated by both and there is hardly a day that goes by that I don't cry at some point. I guess I am morning my health and I'm not sure how long that lasts....forever? I would give anything to have my health back and be my old self again. Right now I'm just trying to educate myself as much as I can on the disease and listen to my doctors.

• Reply

• By Bluegreen
• Posted April 16, 2009 at 12:54 pm
• Report post

Hey, it's not you: it sucks. But it also sounds like you want to make sure you are getting all the wellnesss supports you need: iron injections (something that simple) made all the difference for me.

Get copies of all lab reports. Ask about everything that is outside of normal limits, to remind the doc and also get all the info on what is happening. Get the schedules of protein, potassium, phosphorous and sodium budgets and start making sure what you eat is within limits -- this is a challenge but by working at it, it can become an interesting challenge.

EXERCISE> I cannot make it emotionally without spending time on my bike, swimming, running. The YMCA has a cheap membership option, and I use that without shame. IT's wonderful -- and now I'm getting into yoga which helps with depression and anxiety.

That all comes with one membership.

Be SURE to get some time in the Sun as the weather is getting beautiful.

IT is very hard to have goals derailed for now while you get on top of your health. And it's probably hard to believe you can feel better. But for me, these supports were critical so feel the permission to give yourself time to solidify your wellness routines.

And hot baths are a life saver for stress and helping to move toxins out of your body (not an official opinion but it does seem to help.)

Peace and all the luck in the world, Grace

• Reply

• By amanda_gee
• Posted April 16, 2009 at 1:19 pm
• Report post

You must be strong. I am too a first year college student at the age of 19. Ive had FSGS since i was 14. It was hard at first, trust me. I was going to high school at the time and i had no friends because no one wanted to be friends with someone who was sick. I lost all of my hair and the steroids make me look completely unlike myself. I also had to take 20 pills, sometimes more (and I still do). My family struggled (and still does) with bills from medications and drs.

I had only myself to get me through my illness too. I got depression from it from many things but the biggest one was because i couldnt get off steroids. One day I decided that Im just going to forget about it all and just live. I wanted to just live my life so badly and I decided to start. The next day amazingly, I got better. It was very strange. A couple months later I was in complete remission. The next year I got too sick and had to be hospitalized practically a whole semester. It was a lot worse and I almost needed a transplant (I didnt thankfully).

I know how you feel. No one will ever truly know how you feel or how I feel. The important thing to know is that you have people who support you and want to be with you through your hard times. Its very hard at first, but it wont always be that way. I know you can get through this. I never thought I would but now I am in remission and have been for 3 years. Dont give up.

If you ever have any questions, ask me and I would gladly help

best of luck
amanda

• Reply

• By 2plus1not3
• Posted April 17, 2009 at 7:53 am
• Report post

P -

I too suffer from kidney disease. My condition is so rare I have a hard time finding doctors who can treat it and there is no cure. I remember the first year of college and feeling alone. It was have way in when I was raped then I felt really alone. I was told not to tell anyone. I did tell people, My rapist was a student and I wanted know when else to go through what I did. He was HIV+ (thankfully after many HIV tests I am not). Ironically I found out I was not alone. In fact there were several firls raped by the same person. The only one I did not tell was my Dad - until 4 years later. I am not sure what upset him more the fact that someone hurt me or that fact that I did not talk to him about it. I took the rape not as a tragedy but as an opportunity to better myself. Since that time life has gotten better and it times it good worse. I have been faced with bizarre medical conditions and faced the fear of cancer as well. There is one thing that kept me going. After the rape I was sitting in the chapel at our school wondering if there actually was God and why he would let me go through this. And it dawned on me that God made me go through it because he knew I could and it was also God's why of helping me appreciate the good in life. Thing about it. Look at someone you know who has had little or no tragedy in their life - they probably gripe about the simplest things. Take someone who has been through tragedy and the appreciate the fact that the sun is up, or the fresh smell of coffee. It puts the world in a completely no perspective. When I entered college I was in a shell - talked to noone, socially inept now today I broke out of that shell and have friends and have even become a salesperson and public speaker - something the old me could never have done. Good luck it whatever you do and remember you are special. It doesn't seem fair but you were chosen for a reason so be proud of that - enjoy the sunshine and the smell of a pot of coffee and when you see someone who has never suffered be miserable, be glad you were picked to be you!

• Reply

• By juby
• Posted April 25, 2009 at 6:02 am
• Report post

i can totally relate to you too!!! im 18 and a first year in college. it especially tough my first quarter as i was dealing with the transition of new doctors that were closer to where i am attending college now and meeting new people at the same time...not to mention that classes were a billion times harder than high school!
keep in touch with your professors and the disability office as they can help you out a lot. ie-i get priority sign up time for classes because i get plasma exchanges and my schedule has to work around my treatments
if you have any questions, you can talk to me :)

• Reply

Add to the discussion