Feeling alone

[jsfound]

Hi all, - I'm brand new here and relieved somewhat to find a forum where perhaps I can quit trying to be "Sally Sunshine". I'm so tired and worn out from trying to appear calm, cool and collected to everyone around me.
Here's where I am - I was recently diagnosed with a GRF of 40, in stage 3 and just had a biopsy that in the prelim report showed IgaN. Tomorrow I go and meet with MD to discuss the final lab report. That's the medical info- here's where I am mentally - I'm tired of anyone who knows about this trying to act like they know everything because "they know someone who....(fill in the blank)" or the other thing I'm finding out is that I'm surrounded by a herd of food Nazi's. Everyone is scrutinizing everything I eat or do and it's making me crazy!! I'm trying really hard to change my eating habits - and I'm having success but I view it as a marathon not a sprint to change everything at once. Frankly, I'm feeling so overwhelmed with all this news and all these changes.
So, when it comes to my friends and family - I just want to have a good cry or maybe 2 or 3 good cries.. but if I let that happen, I get the people near me telling me to go on anti-depressants, get a counselor, etc. What is wrong with just being sad for a little bit? I'm not shutting down or making dangerous/unhealthy choices - I'm just sad that my life is changing and my body is defying me.
Physically, I'm really tired. I don't know if that is normal - so a little imput would be nice. I mean I'm really tired. (and when I say anything to fam about being tired...it turns into "that's depression" etc.) I don't understand why some are all so hell-bent on the idea that I'm just stressed.
I'm really glad to have found this board - thanks for letting me rant...

Jenny

[Tonia]

Re: Feeling alone

Jenny, I truly welcome you to the forum. I'm glad you found us. Learning and sharing experiences and letting your hair down is pretty comforting for all of us. Being tired is pretty normal with kidney disease and it's common in stage 3 to have some anemia which can be treated. I think the best advice I can give you is to learn all you can about this diagnosis and give yourself time to accept it. You do have the right and it is normal to feel sad and to have anziety over all this. It takes time, but it will get easier to accept. As far as your friends and family -- they don't know how you feel, but try and be patient with them because this is new for them too. And the diet...you will come to learn the importance of the ol' diet. It really does help to slow the progression of kidney disease. Ask your Neph. for a referral to a good dietician as this can take the guess work out of what you should limit. There are others on here who know more about IgaN so hopefully they will share with you. Feel free to ask any questions or vent anytime.

Toni

[JasonEdwards38]

Re: Feeling alone

You can't expect someone who has never experienced something to truly understand it. It's like depression or anxiety, or the death of a close one...unless you experience it, you haven't the slightest clue what it's about. You think you do, but you dont. I can speak from experience...I thought I knew what depression was, and then I suffered from a bout of it. Now I know what depression is, and it's not about 'feeling bue'. Likewise, I've had anxious times in my life, and figured that was anxiety. Then I had a panic attack, followed by real anxiety. Now I understand what it's all about. So now I have kidney disease (12% function) and I don't waste a lot of time trying to explain how it feels to someone with healthy kidneys - you just can't do it to any real effect. I'll restrict that conversation to others in the same boat, that truly know what It's like.
That said, it's all about 'making the best of it'. Regardless of the challenges that are thrown in your face, the old "Talk Talk" song still rings true: "Baby, life's what you make it".

[jaybird70]

Re: Feeling alone

I am in the same boat. i went for a physical and came back with really bad results GFR of 48. After putting in my lab results it shows I am in Stage 3. I am 40 with two small kids. I am scared to death and I don't want to tell anyone because I am always the calm one. I am going to an endocrinologist in a few days to get an official look and then probably a nephrologist. I don't what this all means. It is all so unexpected. Trying to be happy while hosting a house full of people for Christmas. The "food nazi'ing" has already begun for me as well. I have hypertension and apparently had diabetes and didn't know it. I know what you are going through.

[jenjen76]

Re: Feeling alone

I can not tell you in enough words to say how much I truely understand and the levels of emotions we go through-I have my good days and bad days ..more good than bad now a days but when there bad there a doozy..had 1 yesterday..horrible..I feel for you I wish we all lived closer and could hang out..it is soooo hard for other people to understand ..they just cant..but this is the best site to come to w/the greatest people you could ask for ..truely amazing courages - caring loving people we are blessed to have this site

[I Am Blessed]

Re: Feeling alone

JayBird,

20 years ago I was stage 3 CKD (just didn't know it) and 10 years ago I was stage 4 (just didn't know it) and now I am still stage 4.

HAD I KNOWN ABOUT STAGES AND THE WORKINGS THEREOF, I would have taken better care of my body by eating right and not consuming all the hoards and hoards of dairy products that not only was killing my kidneys further (due to phosphorus and mineral overload) but was clogging up my arteries with cholesterol. I also was eating way too much meat (I'd not only eat my meat portion, but whoever elses meat was left on their plate---love meat!) Well, everything came to a screeching halt 16 months ago when I was told that my kidneys were about gone--16% left!

Was I experiencing symptoms, you ask? Well, yes, but only in hindsite. I had come to "live with" all the symptoms as "just growing older." You know, the aches and pains, and sometimes funny little buzzings in the arms, or itching all over my body. Nothing that really amounted to anything enough to see the doctor about--it might be just for a day or two, and then those symptoms vanished until the next time. I just stayed busy with my life and ignored symptoms. Never did I think it had to do with my kidneys.

Now mind you, I mentioned I was in those stages for all those years, but you have to understand that "stages" were not invented yet...so any time I had blood work done, the doctors would "tag" my creatinine and bun numbers as a warning of some sort, but no doctor did anything about it nor suggested that I do anything about it. Oh, well, 10 years ago, a doctor did tell me to watch my potassium and my magnesium intake, but that was before I was switched to a blood pressure medication with a diuretic. When I switched I asked if I had to still watch my potassium intake and he said no. So, all those years my kidneys were being killed silly. Should I have been consuming so much dairy? Absolutely not--dummy me! Should I have been eating all that meat! Nah, so you can call me Meathead on that one, too. Did I pack on the pounds? Yup--50 lbs worth of overweightness.

Several of you Stage 3'ers out there will hopefully have many, many years left of kidneys function IF and only IF you are eating sensibly and within boundaries. If you need to lose weight, get it off now! This is a must. All the organs in the body work way overtime just toting around the excess baggage, so it's not good for anything. The diseased kidneys, especially, are like a clogged strainer so you can imagine that the harder-to-process foods (ie: meats, dairy, dark greens, etc) are like forcing a bunch of gunk to go through the clogged up strainer. It's just not going to happen! What is going on is that all the phosphorus, all the magnesium, all the minerals are staying inside your sick, clogged up kidney and trapping it in there. The longer it stays in there and is not filtered out, the weaker and weaker your kidneys become...until they quit altogether.

So, my recommendation is to get very serious about changing your diet. Yes, it's very possible you will have to give up a lot of otherwise healthy foods. I had to give up all greens (mustard, turnip, mixed, collards and spinach--boy did I ever love them, too!), I gave up 12 + oz of meat at a meal and now consume around 4 oz, no more dairy of the milk or yellow cheese kind (and see, that really helps towards getting my b/p in control as well because all that is very high in sodium), gave up whole grains, gave up chocolates (don't even miss them and I didn't think I'd ever say that!), and gave up the high potassium fruits such as oranges and bananas. I mainly do lemons...lots of lemons; they're great for flavoring meats and drinks (I put lemon in my water is what I mean by drinks!).

Magnesium is something I mentioned above, and normally on this site I've not seen too much talk about magnesium intake, but this is another mineral that we need to keep an eye on. This is why it's so important to check with your doctor about taking vitamins w/ minerals--or should I say NOT TAKING VITAMINS WITH MINERALS. MINERALS WE NEED, but for the kidney patient minerals can build up in sick kidneys so that needs to be watched closely. Have heart palpatations? Might be an overload of magnesium. Lots of things to think about.

[Palmerswife]

Re: Feeling alone

My husband was recently (2 weeks ago) diagnosed with ESRD. The signs were there but no one saw them, in hind sight , they were screaming at us. We were told that he caught a virus that caused his body to produce antibodies that destroyed his kidneys. He is 53 years old. Life has changed alot in 2 weeks. What we eat has to change, dialysis 3 times a week. I want to do my best for him. I am amazed to find that we aren't alone. There are so many resources available. Our friends and family still don't quite get it, but we are now part of a much BIGGER community. Life is different but different can still be good. I wish you the best.

[jsfound]

Re: Feeling alone

Wow....thank all of you so very much for all the input. For the first time, I feel like I'm not so alone in a room full of people. I see my Neph. MD today to get the final biopsy report and thanks to this site, I have a list of things I want to discuss with him. Here it is - please chime in if you think I've missed something:
A referral to a nutrionist/dietician
Mineral intake
Exhaustion
Those "hindsight" symptoms that I have been ignoring (tingling in my legs and arms, etc)
Fabry Disease (I have really high triglycerides and many of the other symptoms)
continuing to work or reducing my stress and stopping
Dairy

I know there is more but that's my top items. Thanks again for your kindness...I can NOT begin to tell you how relieved I'm feeling !

Take care,
Jenny

[OkieCowgirl79]

Re: Feeling alone

Welcome, Glad you found the forum. Watching your diet and following the rules are important. The diet is hard, but if you learn how to use your binders and eat in moderation, things start looking a little brighter. I have a list that I can email you that may help.

[Maggie1958]

Re: Feeling alone

Hi I am Blessed,

Read your advice, which is very good. You seem quite on top of your illness! For those of us who were recently diagnosed, it's good to hear from someone who has been dealing with kidney disease for quite some time. Your information gives me encouragement that my kidney function won't deteriorate over a short period of time.

I am at Stage 3, I found out quite by accident during an appt. for breast disease. The female surgeon was quite mean and decided to inform me at that moment. She asked if I realized I was at Stage 3 kidney disease. This is one of those doctors whos bedside manner is horrible. We ended up bickering back and forth and she basicly asked me to see another surgeon. Witch!

Thanks again for the information,
Maggie