I haven’t written in awhile. I got the diagnosis of Lupus March 4th and since then have been fighting with insurance to approve the immunosuppressant my rheumatologist wanted me on (Abatacept/Orencia). My doctor went through all the appeals he could and then it was turned back over to us to file a grievance through the state against our insurance company to approve it. Still no- so 2 weeks ago I started another immunosuppressant in lieu of the Abatacept. It is called Cellcept. Cellcept is used after transplant cases and also is used in Lupus (SLE) and Lupus Nephritis (the kidney disease I have). I am on a titration schedule currently with the Cellcept, so every week my dose increases until I get to my steady dose. It has definitely hit me hard GI wise and also headaches. Those are the most common side effects. I am not eating much, throwing up, and major stomach problems. The doctor is hopeful this medicine will work, but if you are familiar with autoimmune diseases and biologics, you know it’s a lot of trial and error to find the right concoction for you. At least we are started on the right track and finally getting treatment! I love love love my new rheumatologist!
I had an appointment with one of my urologists yesterday and it was heavy. I have 4 kidney & bladder specialists, this one is a female reconstructive pelvic surgeon and she helps manage my infections, Interstitial Cystitis and kidney health. She is also on the mind-track that this kidney isn’t going to last and a transplant is my future. She wants me to do my catheters more, 3-4x daily because she reminded me that my brain doesn’t commmunicate to my bladder & tell it to empty, so the urine sits in my bladder & backs up to my kidney & that’s why I’m having bacteria & sediment in my kidney and bladder. SO, in addition to cathing 3-4x a day. I have to irrigate my bladder once a day. I don’t know completely how this works yet, I have a nurse visit in a week to learn how to do it. But basically I have to rinse out my bladder through a catheter with ~250 mL’s of saline to get all the debris out of my bladder. It’s such a process & I’m not looking forward to this AT ALL. But my doctor is confident that this will help my case. Lastly, she changed my prophylactic antibiotic from Hiprex/Methanamine to Macrobid, which is a lot stronger. A prophylactic antibiotic is an antibiotic you take every day to reduce infections. The Hiprex worked great for awhile but I’m back to getting constant infections again so she wants something stronger. Hopefully I don’t get side effects from this one either- Macrobid also has bad GI side effects. It’s hard hearing from all my doctors about my kidney. It’s not easy to know that one day I will have to go through the transplant process, it’s scary, unfamiliar, and seems crazy to think about. I’m trying to compartmentalize this appointment. Yes I will need a kidney transplant but not right now so, I’m trying to tuck away all the fears and emotions that are surrounded with that. And focus on the cathing & irrigating. I will keep everyone posted on how this is going. Please keep this new regimen in your prayers and good thoughts.
I turned 25!! I celebrated my bday 2 weekends ago in Big Bear with some of my best friends! It was amazing & just what I needed after a long, lonely year with covid. My friends went above and beyond to worry about everything so I didn’t have to. I was so spoiled & loved the quality time I got w my girls. It’s crazy we have all known each other for 10+ years!!! The theme was all things pink & I really think we killed it. Also, HUGE NEWS- my parents got me a puppy for my bday!!!! She is a Mini Long-Haired Dachshund named Pippa & she’s an ANGEL BABY!!!!! I’m completely obsessed w her. We just had our first full week together. She’s had very few accidents & is really killing the potty training game. She sleeps w me in bed & finally slept her first full night til 5 am last night!!! The first couple days she slept in the crate and I woke up 5-6x a night to potty her. But 3 nights ago she proved she could be in my bed at night so here we are!!! Georgia (my Basset Hound) is obsessed w Pippa & she is doing SUCH an amazing job being a big sister. Penny (our 4 year old Dachshund) is questionable right now hahaha she will play with Pippa & Georgia occasionally but she’d much rather just be held by my parents lol!
You might be thinking about how sick I am & how I’m managing to parent a puppy right now. But it is actually so so good for me. It’s getting me up & moving a lot more (built in physical therapy), but mainly it’s given me some purpose. I feel needed & important to this little girl. She is providing me so much comfort and makes days in bed so much easier. I never knew it would feel THIS good to have a companion. The last time I felt this way was when I was Tucker’s main human. I also forgot to note that we had to put down 2 of my dogs in April. Butter (our 13 year old Basset) had a stroke while I was in the hospital & when I came home, we put her down. Then, weeks later, Tuck (our 9 year old Great Dane) passed too. It took my heart out & it was a very very hard time for my family. I still think about Tucker every single day. Sometimes all day. I know we gave him the best life & he is still right here with me. Pippa actually has bonded to some of his favorite toys and it makes me smile.
To sum up- a lot of moving parts. I honestly think if it wasn’t for Pippa, I would be in a lot worse shape mentally right now. But I’m staying strong & faithful. I’m vocalizing my emotions, fears, and worries & working through them as best as I can. I’m turning to my family & friends & of course they’ve been beyond amazing & supportive. I’m very blessed. Even with all the bad, there is still good. Thank you for reading!
*If you have familiarity with irrigating your bladder at home, please shoot me a message or comment!
4 thoughts on “Lil update- The good, the bad, and the in between!”
Pippa is so cute! Almost as cute as you and your friends all in pink!
Just seeing this – aweeee thank you!
Lupus is really a struggle and I hope you find the right mix of medications that will work for you. All your pics from your bday party look so fun. And your new puppy is too cute.
Thank you so so much! Just now seeing this