It has been such a long time since I gave any life updates. In the last seven months since my last update a whole lot has happened and like always I felt like i should update you all. You’re my biggest supporters and allies and you know my story almost as well as I do. I trust all of you incredibly which is why I feel comfortable enough to share everything with you.
Firstly my ex girlfriend was in the hospital the past eight months and recently got out but because of a big argument I had with her friend she dumped me. Well more like ghosted me. She blocked me on everything we had to communicate without any form of warning. Lord only knows what she has been told about me to make her turn on me so suddenly. It absolutely broke my heart but I’m slowly learning to move on without her in my life. There was a time I didn’t have her and I survived then so I can survive now. That’s the most recent event as I’m writing this.
I met a new friend who has inspired my inner author the past few weeks and has helped me feel better about the breakup. She’s one of the sweetest girls I’ve ever met and I can easily foresee her being in my life for a very very long time.
We also got a new car. A 2019 Jeep Cherokee. My dream car brand! It’s meant for me for when I move out but for now it stays in my parents name. I’m probably going to marry the car though because it’s literally the perfect car for me. I can back into my driveway now!!! And it has a sunroof which is super amazing!
I didnt get my wisdom teeth out yet. They haven’t been bugging me much the past few months but I’ve been refusing to get them out here in Texas cause the dental surgeon I sent to turned me away the day of surgery (I’ll explain next paragraph) and I’ve been too anxious to go back to get a new referral. We are currently on our way to Montana though so I’ll hopefully get them done there.
I reached an all time low in my depression and anxiety. The stress of having my brother living in the camper with us after his accident and having to get my wisdom teeth out put me in an incredibly bad state of mind and I ended up taking a bunch of pills. For a few moments I wanted nothing more then to leave my body and be at peace. My best friend who lives here in the states managed to knock some sense into me pretty quickly. I 100% owe my life to her. I was in the icu for a few days while they tried to stabilize my blood pressure and heart rate. Then I was moved to a different floor I can’t remember the name of and I stayed there for a couple more days. I then spent 4 days in the psych ward and was put on three anti depressants. While I was there I also learned I have adhd and that if I’d had that diagnosis as a kid and was treated I probably wouldn’t have struggled as much in school. I ended up quitting the meds when my doctor couldn’t refill them and my primary refused to make adjustments or changes. I cannot see a therapist as I’m not a resident and that’s a requirement for mental health care apparently. On the bright side for almost six months I had no sleeping issues after I got out. Now I’m back to writing posts in the middle of the night suddenly😂😂. The night I took the pills though was very scary for me. I’ve always had those thoughts when looking at freshly refilled bottles of meds but I’d always been strong willed enough to ignore them and go on with my life. I never want to feel like that again.
My mother was recently diagnosed with stage three kidney failure as well. While we were in Colorado from my brothers accident my mom went to the er and I saw her creatinine levels were indicative of stage one but her doctor brushed it off when I asked about it. Only to find six months later that it was kidney failure. It truly has me peeves thinking of we’d known then we could’ve helped her stop the damage and keep her from getting to this point. She brushes it off too. While she’s taking better care of herself she keeps joking and talking about herself dying. It’s very hard to watch and hear but I suppose I’d have to face losing her at some point in my life and even if it doesn’t happen for years I’ll at least be more prepared now that we know it could be sooner rather then later.
My brother is working way sooner then had been suspected. Which is amazing!! He’s working as a truck driver currently and is doing decently on his own. In light of covid 19 though he’s been staying with my aunt and cousin since he’s been considered non essential to the company he’s working for (still technically a trainee)
I can’t think of anything else that has happened since our last ‘talk’ but if I do I’ll put it in the comments 🙂🙂 I hope everyone is safe and healthy and not going insane with the virus going around so ruthlessly. Please feel free to tell me about all your milestones in either treatment or in life! I love to hear about other people’s lives.
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Ccrowlu
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That all sounds like a riding a surf board through a massive surf. Well done for coming out the other side - you obviously have a resilience that you didn't think you had.
WOW what a life you have been having darling and well for admitting what you did. It was a cry for help and i understand where your coming from. I glad to hear your brothers working so that is good news.
Milestones well i too could write a book. It all started late 2018 when my rheumy wanted me of my meds to put me baricitnib, but before that could take place i had to the various blood tests. Trouble was i was diagnosed with latent tb and then there was a three month course of serious hospital antibiotics. The side effects of them was every morning i had the trots. After that i was able to take said new drug and i was doing alright until last autumn when i kept going to the drs with breathing problems. I would be given some antibiotics which eased it for a little while. I kept going back until Xmas when i rang my rheumy nurse who told me straight away to stop the drug. So coming into the new year i kept going back to the drs and a few weeks i saw a new dr at the practice and she ordered a x-ray which came back clear so she ordered me a ct scan. WHich in turn showed where the infection really was. I have pneumonia and i have been fighting this since last year. So more antibiotics for me. Well i am now on my 4th yes 4th course of them and i have just started to turn a corner. I am feeling brighter even though i know i am not out of the woods yet as i could always have a relapse, but i am hopeful. Now my story is over i hope we hear more from you darling.xxx
No one’s life is perfect but you have certainly shown how to deal with a heck of a lot......you’ll go far with all you have overcome....well done you.
You have made your one big mistake in life ...now put it behind you and never do it again......It sounds as if you have made a good friend now....you can start to enjoy life again.
Great news about the car...have you got a job yet...I guess that is difficult moving around like you do? Very pleased to hear your brother has recovered so well too....you are a tough pair.
I hope your Mum continues to look after herself....she’s setting you an example to do the same....take care & obey all the instructions re Covid19....it is not to be trifled with.
I’m personally making sure she stays safe. I don’t feel like losing my mother in the midst of everything. I do not have a job yet sadly but I have found a friend who has a room for me when my parents can afford to help me make the trip across country to reach her!
Great to see you’ve come out the other side and hopefully this girl is the one for you,mental health is a big issue with RA and I was struggling for a long time and putting it to 1 side ,I joined a group where I stay called Martyn’s Monday Club where men with mental health problems meet and it’s transformed me to talk openly now as I wouldn’t have normally done, hope things keep improving as you know we’re all here xxx
Re your mum AKI or CKD stage 3 is near enough normal to not make any apprecaiable difference; most would not even know they had a problem. No meds. or diet just watch the weight and stay active. I've gone from low stage 5 back up to nearly 3 (ever hopeful). I got called into A and E (your ER) because of RA blood test I never knew anything wrong. So please do keep a good sense of perspective. Many people live really good active lives with kidney disease but watching weight, blood pressure etc is advised as it can impact on heart function. I've been advised at CKD stage 4 that I can expect to live normal length of time provided I stay healthy and active. So please do not write your mum off as its not a death sentence and my experience is it doesn't hurt but and thats now over a couple of years. I'd suggest she talks to the nephrologist to see about an exercise program and simply avoid grapes, pineapple, baked beans, lo salt salt and banana. I suggest perhaps looking into a partnered transplant in the future and dialysis is actually not that bad.
She has a hiatal hernia so she actually can’t do anything other then walk. She’s not even supposed to lift a bag of grocery’s heavier then five pounds. And she’s constantly exhausted and her kidneys do hurt her. I personally think that they may have been wrong with the staging part but I’ve see her levels and they are anything but good. All she can actually really do is drink lots of water and walk when she can. She also has diverticulitis too so she already can’t eat anything with seeds and she can’t eat red meat more then one night in a row. Her diet can’t be adjusted any further cause it’s already super restricted
Do you in America not see dietician and trainer which we do her in UK if its needed as they do help. I'm Celiac so do understand but dosages of meds are adjusted so being treated for other things isn't a problem in most cases. Kidney disease hurting might need more investigation as it sounds unusual obviously she must have had a biopsy so a diagnosis of whats going on. If not can she get one? My kidneys are 25% dead and walking is good exercise so is swimming. Has she been tested for Anaemia because thats common with CKD which just means its ongoing over time and easily treated. I'd urge you to find out whats going on as it is treatable and definitely not a death sentence. And Renal Counsellors are great, as it is shock and yes I get tired and Promise you at 8% function even standing up was hard but you do adjust over time. It is not a good idea though to think life is over, dialysis comes in at 10% and works well but your mum at stage 3 is along way from that thank goodness. I'm not sure eating a lot of meat does any good so please ask to seethe dietician with her.Its not about loosing weight but how to eat to help the kidney.
Her kidney doctor talked to her about her diet and agreed there’s not much she can change because of the restrictions her diverticulitis causes. The only changes she could make she’s already done. She’s cut out sugar and pop and that’s literally all she can do. The doctor she saw for her diverticulitis and hernia refuses to do anything to solve those issues so she basically is being forced to wait till it nearly or actually kills her to get something done about those two things. She had many blood tests and gets her blood drawn every month to check her function and has had ultrasounds to but at the stage she claims she’s in there is no probably cause for a biopsy
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frustrated with gp re pain meds. 
been to see my nurse
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Impact of RA on my daughter.. 
