Lost and confused

By rwest345

6 min read

I don't know if my story is different than anybody else's. I haven't read hardly any. I just joined recently. I've avoided this part because I'm not that strong. I thought I was. I'm clearly not. Will it help? I don't know. It's probably going to make me cry. I hate that part. I don't cry because I'm dying. I cry because I don't think I will have the strength to get through the struggle. No matter how many times I tell myself I have strength in me - life just proves me wrong. I don't think I have won too many of those battles.

Experiencing mental health struggles

Luckily, I'm in a better place right now and can share. It's very hard. Impossible some days. I have beat thoughts of suicide. With help from a counselor. I do slide sometimes and have been able to keep going through fear of pain. Many times I have thought about it and couldn't because I didn't know how to take my life without it hurting.

If anybody needs this, use it. "I don't want to be here" I've said too many times. Now I say "I don't want to be here in this situation" and I don't try to find ways to change the situation at that time. That can become hopeless. It works just to realize in this particular moment right now is what has put me here and things can change in another moment. Just get through the here and now.

I had high blood pressure for quite sometime. I had a little neuropathy. My doc was treating me for both. He did say my sugar was little high. He had me on metformin and blood pressure pills. I was active in my job. I changed jobs and started supervising with a lot less manual work. I got treated unfairly and acquired a different job doing less physical work as a night manger.

Not knowing I have diabetes

I don't remember what sent me to the doctor in the first place. This all happened 2-3 months ago. He ran some tests. I think it was a physical I was supposed to get. Anyway he tried to get me on trulicity. I didn't even know I was diabetic type 1 when he tried to get me on trulicity. The insurance turned it down. Makes sense, I'm not diabetic. (I was type 1 and did not know) I did not know that was type 1 -a little high blood sugar. I thought diabetics fainted if they didn't eat. I thought there's more to it than that (found out I was wrong).

My doctor was treating me as a diabetic. I did not realize that I was or had diabetes. When the doc said, "but that's what diabetes is" - I felt stupid. I never treated myself as a diabetic. The doctor was managing it fine with the meds he had me on.

I'm not sure of the exact timeline, but at one point my kidneys were at 53% earlier this year. Maybe 3ish months ago. Doc said they are working, but at half their percentage. Knowing you can be just fine with 50% it wasn't too much of a concern.

Fast forward to the recent blood work. When the bloodwork came back, I was diagnosed with type 2 diabetes and Ck3b at 35%. The paper work said acute kidney injury and my doc referred me to nephrologist. Life just stopped and changed overnight. I did not realize I was even diabetic in the first place. All of a sudden I'm near stage 4 (had to research to find that). I'm now on insulin. Thank the goodness he got me on Mounjaro and not Ozempic.

Navigating diet with diabetes and CKD

I asked my doctor about a dietitian. Wouldn't even give me a recommendation much less a referral. I guess he assumed the nephrologist will. But my apt is still 30 days away. Most everything I've read on what to eat is based on numbers. He said my protein is high in my urine. Creatinine is what i think they call it. When researching, it seems some advice is to have a high potassium content in your food, but saw somewhere else and you can read just the opposite. Apparently the menu selection for diabetes and CKD is different - but some things cross over.

I've been eating fruit like crazy - but another article says potassium is not your fried. PMG berries are supposed to be good, but all they have in them is high potassium!! I tried having nuts to fill me up. Well that ended up not being a good idea either. They list stupid spices as a food good for both. I don't even know what turmeric is, much less just eat it from the container. Lentils are supposed to be good for me. It's bird food. So are stupid sunflower seeds.

I grilled chicken boneless skinless chicken breast on the grill and froze some. Apparently I can't have the doggone best part. It's not supposed to be browned at all. The crossover list has like 3 foods on it I might like. Hummus is stupid and tastes terrible. I've told my wife for years and I still mean it. The day I can only have kale and spinach just kill me. I still stand on that. I don't care to live if I can't have anything worth eating. I hate over half the crap I can eat that's on this list.

Struggling with a new diagnosis

I have so many struggles with this new diagnosis it's not funny. I'm lucky to get through a week without crying about something. My stress level is off the chart. I called insurance about a psych doc. It's $75 a visit. Can't afford that. As it is, the meds are starting to pile up.

At one time, I was taking 5 different meds. Some for medical, some for my mental state. I got tired of taking meds and dropped a lot of them. Took myself down to one metformin and one gabapentin a day. Went off the sertraline, switched jobs and insurance anyway and wouldn't be able to afford the psych doc who prescribed it anyway.

Been medicating with MJ for years. Works for head. I can honestly say I just like the feeling though. I may have been addicted slightly. But I've quit (this time) maybe for good. Apparently near end stage it may help when other meds can't be taken.

Feeling lost and frustrated on conflicting information

I'm lost and confused on what to eat. I hate just about everything except for fruit and then some of it I can't have. Of course it depends on who the heck you ask.

My wife is a health nut when it comes to food. We both have said I could probably eat anything she makes and be fine. I've seen what she eats. I don't like that junk. My daughter and her love hummus. OMG that stuff is the worst. Kill me first. My wife was very happy to hear that I don't want her to cook for me. She knows I'm just gonna complain - I do too. I don't like it and don't want it.

Apparently, if I like it, I can't have it. God forbid good fruit be on the list I can have. Any fruit that is actually ripe and good to eat raise the stupid blood sugar. Filling up on nuts has too much protein. Apparently any more than 2-3 cups plain air popped pop corn has too much starch or something. I bought some stupid salmon today because it's on the list and fish is not terrible - but again apparently I can't have that too much of that. I bought tuna for to make a tuna melt. Can't have the relish or the doggone pickles.

I'm getting mad just typing all the dadburn things I'm limited by. Every time I find something tolerable, it's either not really or if actually taste good you can't have more that two bites.

Thinking about the future

I was already on edge. Now I've got all this new stuff and more just keeps piling on. It seems I'm forgetting more than I already was. Apparently that's a symptom. Oh great. I just can't wait for the future. Lost stressed and confused. And I don't see any of it getting better.

Yeh people live with both for years. I really don't want too. Boy I Sure can't wait to get on dialysis. I honestly hope I die first. Sounds too damn hard to live thru. Yeh that 's my fkn story. I'm sorry for cussin I'm cryin noew

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CommunityMember993158 Member
It is all very hard and can be extremely depressing. Yet I'm sure your alot stronger than you give yourself credit. Thank you for sharing your feelings. I don't believe you realize how strong you are in just doing that. I wish I could do more but I will definitely keep us both in prayers 
1. rwest345 Member
 <inline-mention username="CommunityMember993158" user-id="8588980"/> I forgot to mention I do appreciate your reply and feed back. It helps. It's been in the back of my mind to get back here and update, but being low priority makes it easier too. Anything that needs or wants doing that can be put in a box that says(when you feel like it) is a huge help on the psyche.
rwest345 Member
Thanks . I'm doing a lot better recently. I've got a counselor I've met with twice and I'm getting a better handling the new challenges. Life in general threw a curve ball and kept my mind busy too. Had a problem with the truck doing a shimmy shudder. It seems this is common. And learned the fix is a transmission fluid change and filter replacement. The guy at the transmission shop said that never fixes it. Said either plan to spend 4-5K on a rebuilt transmission or get out from underneath it. Traded it in over the weekend. Now it's not my monkeys. I still kinda' followed the plan , but nothing got logged and I didn't go all off the program I just let myself have food when I was hungry and didn't worry over if it was to little of what or too much one one. I think I checked my blood sugar 1-2 times a day. It was fine. Back on the program this week. I had already been sorta' looking around . The wife had mentioned the gas its been taking. I drive 45 min. to work and back. I miss the truck but the 2022 Camry averaged 33mpg to the 2018 Colorado's 20mpg. I wanted a Maverick but damn they're expensive!! Those trucks are getting 40's on the highway-but so does the camry. lol I put my truck box and tools in the trunk. tools can be access by dropping the one side of back seat. l first tried laying down the back seat. Worked good too, but I like it better with the seat up and the tool bad accessible. Haha there's no room left in the trunk except for maybe squirt bottle. Put the heavy tools opposite my big butt - closer to the passenger side to balance out weight. Car rides smooth as butter. Probably gonna have to rotate tires every oil change. Anyway I am doing better and my counselor is great. I've met with the nephrologist and my second apt is coming soon. The dietician got fired. All she had to say was cut back on salt. And she insisted I eat more meat - heck that's what put me here. My nephrologist said he will get me a dietician next visit. so things are looking up. Still don't ant to do this long term. I'm sure that will never go away; but my counselor has already been helping me cope. if nothing else it's someone to talk to. 
1. Cindy Barton Moderator
 <inline-mention username="CommunityMember9791401" user-id="9791401"/> Keep fighting the good fight Diane you are amazing and my hero! Cindy (TM)
2. CommunityMember9791401 Member
 <inline-mention username="Cindy Barton" user-id="8860834"/> Thank you so much!! You are the best. Diane (Team Member)
rwest345 Member
Breaking our own stereo types is really hard. When asked if I wanted to talk with a male or female I already knew I could never talk to a man abut my feelings. It just appears wrong in my head. I have a hard time just wanting to be a regular guy and the idea of getting in deep thoughts with another guy just scares the hell out of me. I even know its not the case but I could never be honest. I'd still have that stigma. We're supposed tot be tuff right? Yes I'm 60 and live with that stigma in my mind. It really hurts me when someone actually sees anything from me that resembles weakness-even though in reality I crumble like a baby. Hard enough to admit it out loud. Gawd forbid in front of a guy. And if I did breakdown I'd probably lose my mind. Just can't get there. I doubt I ever will. someone asked me how I can just let loose online. to me I guess it's kinda like a diary that talks back. We will never meet. You don't know me. Chances of anyone realizng who I really am are so low it nears astronomical. I haven't had anybody to talk to for years. The release does wonders. I never thought it would help as much as it does. So I ramble a lot. Many of my posts go all over the place. It's just thoughts that go thru my head. It's a place to put them. I have actually gone back many times and read them over-and can say ,yeh that's about it-aint nothing wrong about it. I've been dealing with personal struggles for years. Adding on Kidney disease and diabetes type 2 just made life tougher.(yes I have both-and I found out at the same time) Especially when you were never in a good place to start with. I have good days and bad days. Sometimes weeks, sometimes months. I don't have the memory to keep up. Oh and I have my second nephrologist appointment coming up. Looking forward to it. I like my doctor when we met the first time. I'm looking for the amil but didnt see it. Gotta go through textt next-oh I bet thaat info is in my folder. I made a folder/notbook just for medical stuff. Has my latest blood work and most papers given to me. I keep my Livongo repot in it and has my Insurance card. I take it with me to any appointment. This way it's all in one place and feels confined. Oh and thanks for being concerned/interested.
1. Cindy Barton Moderator
 <inline-mention username="rwest345" user-id="9763544"/> You know you talk to whom ever you feel you are comfortable with and I must insert here your wife is okay with too. She matters. It is hard to share our inmost confidential thoughts and feelings. I'm glad you have found this a safe place to share. We are glad you are here and you are expressing yourself. Keeping feelings pent up inside is not healthy for any of us. Let us know how your next nephrology appointment goes. I will be sharing mine I'm sure. Prayers for all of us. Cindy (TM)
CommunityMember0914d9 Member
HI I'm Gala I was just diagnosed today I only have 1kidney my other was removed due to a tumor in 2007 the one left is at 22% my PCP is sending me to a specialist trying to figure out what is happening I am only 7% away from dialysis told me to eat fruit and veggies only and also I am a diabetic type 2 metformin for it twice a day with meals I AM SCARED CONFUSED AND HAVE NO IDEA AND ALSO I AM BATTLING A HERNIATED DISC IN MY LOWER BACK 
1. Diane Talbert Moderator & Contributor
 <inline-mention username="CommunityMember0914d9" user-id="9799852"/> , I am so sorry you are having to go through so much. It is alright to be scared. You have several things going on. Is your healthcare team working together to put together a plan? Please talk to someone who can guide you. I have 5 doctors that work together. At the end of the day, I take all directions from my kidney doctor. Have you had a chance to talk to your nephrologist yet? We are here if you need us. Just do 1 thing at a time. Start taking notes if you are talking to different doctors at once. You want to be able to tell them what each doctor is saying. Diane (Team Member)
CommunityMember0914d9 Member
Thank you I was just called by my spine doctor I am going to need surgery for this disc only way to fix it I am waiting for them to call for a pre op appointment but will they do surgery with my 1kidney only working 22 %????
1. Cindy Barton Moderator
 <inline-mention username="CommunityMember0914d9" user-id="9799852"/> hello! Sorry you are going through so much. You have a lot of your plate. I can’t answer your question about the surgery and your back but it is something you need to discuss heavily with your nephrologist and your spine doctor. There are certain drugs that can cause damage to the kidneys and you need to know what medicine they will be putting in your veins. Also, with the diabetes you really need a certified renal dietitian to help you balance out the diabetes needs and the kidney needs. They are different. If you don’t have any certified renal dietitians in your area there are some on Facebook and Instagram. Did your doctor tell you how much water to be drinking a day? If you are not retaining water (swelling around the ankles and other places) you should be drinking a lot of water but a doctor needs to tell you how much. I hope you can get some help. Keep us posted. Cindy Barton (team member)