Lupus Update


Well, this post is very fitting right now because May is Lupus Awareness Month and because I am under Cecilio's employee health insurance, I am now able to see my old doctors again from UC Davis Medical Center.


If you're new to this blog, then you probably don't know that I have lupus: SLE, lupus nephritis (which affects the kidney), and cerebritis (an infection of the brain that resulted in a stroke in December 2011 and subsequent seizures, so I have to take keppra forever). I've had flareups, seizures, and a kidney problems between 2010–2015.

So last year, I was on my way to remission and my labs were excellent. I had negative protein in my kidney, and my anti-DNA labs were coming up as negative, which meant that the lupus was inactive. My former rheumatologist at the time, kept tapering my prednisone because she saw how well I was doing. There was another problem though: I was on regular MediCal (state government funded insurance), I had to renew my membership in June. UCDMC only accepts regular MediCal as opposed to the MediCal Managed Plan (which is also state funded, but coordinates and sets you up with doctors but only within their network. So I did renew my membership and had my PCP fax over the part of the form she had to sign along with my lab tests. I got a letter a few weeks later, denied from staying in regular MediCal because the "labs showed that my condition was not severe enough to stay on it" (I am just paraphrasing what the letter said). I was livid. Yes, I was getting better at the time but that's because I am under the care of excellent specialists who are treating me, and if I don't see them regularly, I could slip back into a flareup. And if I don't take my keppra, my risk of getting another seizure increases.

I fought tooth and nail to stay on the regular MediCal so that I can still see my doctors. They knew my health history inside and out, and have been with me throughout all of my issues. I even had to speak to the judge on the phone, explaining to her that I needed to stay with my doctors to manage my lupus with the severity of my past issues. She was kind and understanding, so she told me to have my rheumatologist and nephrologist fax a letter to her and send her my lab tests. I did do that. I still got denied in September.

I was eventually mailed a new insurance card with my new PCP's information, and I set up an appointment with her in December. She refilled my medications for me, but when it was time for another refill she denied it, because I did not get my labs done at the time (the labs were at a different location from her clinic). She eventually did refill it one more time, but I could not deal with her front desk lady. She was very rude, and talks in a "what do you want?" tone. I've seen her talk down on other patients. I was at fault for not getting the labs done and running out of cellcept, but they also did not store my information and were bad at communicating with me. So I had to go to urgent care twice just to get my meds refilled.

Ok, that was a long-winded summary of what's happened in the past year. For the past few days, I was able to go back to UCDMC and see my PCP. She prescribed to me a month's worth of my medications, and I was able to pick them up at my new pharmacy, CVS. I also had to get some lab work done. I was able to see my new rheumatologist earlier this morning (my former one no longer works there). He concerned that my blood platelets were low, and that my sed rate (a blood test that indicates inflammatory activity) was high compared to last year, though not as high as when I had really bad flareups. He also saw that there was a bit of protein in my kidney. Again, not as high as when I had flareups in 2011–2013. He had me take another spot urine test, and he will follow up with me to see if I have to increase my cellcept or go back on prednisone.

Honestly, I'm pretty disheartened right now. It feels like I taken 1 step forward only to go 2 steps back with my health. It put a damper on my day. He said I would have to probably go on 5 mg or 10 mg on prednisone which is really small, but I prefer not to take it. We suspect that my lupus is flaring up a little bit because I've either missed doses of cellcept (which is incredibly hard to refill) or tapered down on my prednisone to where I'm not taking it right now (per my former rheumatologist's orders). I've struggled with the weight gain on prednisone, and I know it's so vain and superficial that I am mainly concerned about with that but I've suffered with body image issues since I was younger and it's always been a struggle to lose weight while tapering. I have been able to lose 25 pounds as I was tapering, but I don't want to go back to having that dreaded moonface and bigger frame, with people wondering why I don't like taking pictures at parties or gatherings. But if I have to take it for the sake of my health and for the sake of remission, I will. So that it won't happen again. And like I always say about my weight loss: if I go back to the prednisone weight, I hope I can be able to take it with grace this time.

I try to be strong in my posts and not be negative like I used to be, but it can be hard. But what I want to send the message is that it's ok to not be ok and it's ok to have weak moments. I sometimes resent people who are perfectly healthy and don't have to struggle with their body, weight, or can fulfill their dreams without impairment. Like when I couldn't drive for a long time while I was in school because of my seizures, so I couldn't work or have an internship (until after I graduated), therefore lacking experience. I was so depressed about it too, thus impairing my ability to perform well in my classes, projects and homework.

But I wouldn't be where I am today without all of that, and I probably wouldn't have been motivated to work harder because of it. My mom and Cecilio tell me sometimes that there are healthy people who don't work as hard, and to accomplish what I've been able to despite the hardships. There are those also with impairments, sicknesses, etc. but are able to accomplish much more than anyone can ever dream of. There are times when I want to throw in the towel and give up on the job search because it feels like it's going nowhere, but I can't.

Cecilio has been so supportive with my health too: forcing me to wear a hat even when I don't want to (lupus patients have to stay out of the sun as much as possible) and promising me we will eat better, and making me feel beautiful no matter what size.

I don't know what you guys are going through, maybe you are desiring that job, relationship, child, better health, etc. Hang in there. It does get better, and even if the situations seem cyclical and never ends (like how my lupus comes and goes). I am taking things day by day. And even if I am a little blue right now, I have so much to be thankful for: a loving husband, a cool little apartment in a quiet neighborhood, a supportive family and great friends. And being paid to take care of my younger sister who has autism until I find a job. And of course, the insurance thats enabling me to see my doctors again and treating me well. It's ok to not be ok and strong all the time, and we're all in this together.

13 comments :

  1. Thank you so much for teaching me a little more about Lupus. I wish you the best! -Hanna Lei

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  2. I love your message about being okay with not being okay. I'm so sorry that you have to deal with your health issues, but I know that you're such a strong person and it sounds like you have a great support system, too. Your strength is so inspiring and I agree with what your mom and husband say; I know of so many perfectly healthy people who not only take their health for granted, but also waste their lives away and don't work as hard as others who struggle with other issues. You're doing amazing. Sending all my love your way!!

    Paula
    Thirteen Thoughts

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  3. Praying for you girl. 💜
    You can do this!

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    Replies
    1. Thank you! I am praying for your mom too.

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  4. Thank you for sharing your story! I didn't know a lot about Lupus so this was very eye opening!

    Britt | http://alternativelyspeaking.ca/

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  5. It was a great introduction to Lupus since I didn't know anything about it Hannah. And I have to agree, we all struggle with something every day and we must support and love each other. I am a little blue right now too but I know it takes time and everything will be back to normal soon. Sending hugs and I know you are a strong girl! x

    Yiota
    PinkDaisyLoves

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  6. Blogging is a good release I think when you are feeling down. It also helps others who are often going through similar.

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  7. Just discovered your blog! Love to read you, keep strong as life is always up and down, perfection does not exist!

    Send you a huge kiss from Spain <3 <3 <3

    www.lacaleya.com

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    Replies
    1. Thanks for your love, care and support <3

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  8. You are so strong, Hannah. Remember, only the strongest fight these battles… but there are brighter days definitely ahead and being so well acquainted with darkness only makes them all the brighter. Stay strong xX

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  9. You're so inspiring, Hannah. And I think you're much stronger than you think you are.

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