Living With Lupus: Not Just Another Birthday

Sarah celebrated her 23rd birthday again for the 9th time last week.

All kidding aside her youthful looks mask what has been an unfair roll of the genetic dice for the rest of her life.

My wife suffers from Lupus and has known this since childhood.  Even back then the prognosis for those diagnosed at an early age is generally unkind. Some may see little to no improvement from symptoms even with heavy medication. Nearly an equal percentage can see a downward spiral into worsening health.

This is why birthdays can’t be taken for granted for anyone suffering from lupus/SLE or any other potentially deadly illness. But this year perhaps more than most. Sarah is nearing the completion of the capstone project for her PhD program – new research that will hopefully redefine how lupus patients can better communicate their symptoms through self-assessment for with improved treatment practices. Before I talk more about the future of this survey, I need to do my best to tell you what its like to live with lupus through someone else’s eyes.

I found out about my future wife having lupus on our second date.  I didn’t fully realize how lupus really could be a killer disease.  I simply saw how healthy she looked and couldn’t believe her condition could possibly be as bad as what I read online. What you will find when you ‘Google’ lupus is find a definition that includes a ‘butterfly-like’ rash on the face and as a chronic autoimmune disease…it can be fatal.

It was a small relief to find out her condition was considered a ‘mild’ case, though she was still prone to flares.  These are times where the disease ramps up its attack on your own internal organs and tissue.  This can and often will lead to hospitalization and/or aggressive chemotherapy treatments.

I remember Sarah telling me in so many words what it was like to have lupus:

“The most limiting is the exhaustion and fatigue.  Imagine you have the flu, every day with a feeling of fever, body aches and joint pain.  Now imagine you also have other elements of Lupus such as rheumatoid arthritis, Reynaud’s disease, occasional mouth ulcers and skin rashes due to stress or too much exposure to the Sun.”

Since she was first diagnosed, my wife takes 12 pills daily for a variety of symptoms as complex as the disease itself.  She carries a positive spin on things despite as she says, “even though you have this disease that’s trying to kill you, you can’t simply become a grouch about it or feel sorry for yourself.  Because you live in pain, doesn’t mean you have to become one.”

And that’s for a typical day for a ‘mild’ case of lupus.  I’m still floored thinking about it and saddened to type it.

As is the case living with any terminal illness even the ‘mild’ variety, there’s the always very real possibility of the situation worsening and doing so on a timetable you’re never prepared for.

“Carpe Diem”

That phrase may sound a little cliché, but its a motto we find ourselves sticking to when the medical odds are stacked against you. I’m happy to say in the seven years we’ve been together, we’ve certainly found time to love living life.

From the shores of Venice to Hawaii…

Here are more snapshots from our wedding day to traveling around the world from Europe, Alaska and most recently our trip to the Caribbean.

These best of times that are counterbalanced with those other times that seem to have become a little more frequent of late.  Those are the days where we simply stay at home as Sarah goes to bed taking another round of pill-based chemotherapy treatments.  Its on these treatment days when vacation and happier times are the furthest thing from my mind.  But not Sarah’s.

Suffering from lupus has yet to get in the way of her childhood dreams. She wanted to travel the world.  Check.  She wanted to stay close to friends and family through the years.  Check.  She wanted to become a college professor, succeeded and was quickly promoted to Dean of Academics in less than 3 years. Check.  She wanted to complete her PhD program, several times delayed by lupus-related flares that make simply picking up a book too hard on her limbs.  As of next August- check.  She wanted to be treated well by a decent man, and hopefully one day have a family of her own.  I can’t vouch for the former, but hopefully we soon will be working on the latter.

This is why I value birthdays far more now than ever before.  It isn’t a milestone that’s simply passed by, this is a very real celebration of life.  Or at least that’s what it should be.  This perspective I would’ve never known or fully appreciated until I met my wife.  Through the eyes of someone facing down a potentially deadly disease, now I find myself appreciating more every moment, every minute of life and even the pauses in between.

“…In sickness and in health…”

With her wedding band in view, this photo reminds me of my life’s oath to stay by her side no matter what comes our way. Also in view is a delicious dessert (one of our favorites creme brulee) reminding us to savor the moment while living one day at time with lupus.

Her perspective living with the disease has become the basis for her research to develop a more accurate symptom assessment scale for lupus. Sarah hopes the development and validation testing of her research will provide patients with a more accurate measure to communicate what ails them and what pains them daily, known as the Lupus Activity Scale (LAS).

LAS– potential for lupus patients to self monitor their flares and symptoms, empowers the patient to be active in their treatment and will help speed up research as it allows studies to monitor the disease activity cost effectively, non evasively and in a timely manner, no need to wait for lab results.” 

With any luck, by creating this measure of self-reporting symptom activity, Sarah will be providing a new tool for doctors and care takers so that other children and adults getting diagnosed with lupus for the first time hopefully won’t have to experience the weeks, months and years of medicine roulette and missed diagnoses.

I am amazed that she’s able to do this while taking chemotherapy for the very same disease she’s doing research on to benefit present and future patients.

Then again this is wife I’m writing about, I would expect no less from someone who lives life to the fullest no matter the odds.

Sarah’s Research Project and Survey Link – please forward to those you know who suffer from Lupus.

Helpful Links:

On Facebook: The Lupus Activity Scale support page
Lupus Foundation of Northern California
Lupus Foundation of America
Center for Clinical Trials Education (development and validation of the LAS study under the “psychosocial” section)

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By robmayeda

56 comments on “Living With Lupus: Not Just Another Birthday

  1. Thanks so much for sharing your story. The Lupus Activity Scale will be a godsend to people who have the frustrating battle of just getting diagnosed correctly.

    • Helen-

      Indeed that is her hope. She had a struggle of being diagnosed correctly as a child, so the survey certainly has that perspective in mind. Thanks so much for the show of support! – Rob

  2. I think Sarah will agree that even the strongest of women can not do it alone. She’s lucky to have a guy like you at her side. Many birthdays and many blessings!

    • Kris-

      Thanks so much for posting here as well! We’re lucky to be surrounded by good friends like you who are always there for support. Its moments like these where life comes into perspective, and you’re thankful for simply just having this time together. Thanks so much again – Rob

  3. Thank you for sharing your story. I know that someday my daughter will be blessed with an amazing friend, husband and soulmate like you! Understanding what life is like for those that have Lupus as well as how it effects the whole family – no one knows unless they live it. It’s stories like yours that will help others have more compassion, understanding and love. I
    I have been blessed with the most amazing, strong, courageous daughter in the whole world. Best to you and Sara – live a long, happy, wonderful life together!
    Blessings,
    Dawn

    • Dawn-

      Thanks for sharing your thoughts on the posting…it has been quite a journey for us, and I don’t think I could’ve managed things the way Sarah has. The collective support of family and friends (and new online ones!) is really remarkable/essential to keeping a positive outlook on things. Thank you! – Rob

  4. Thanks so much for reaching out and educating those who love Sarah about the condition and her incredible strength. I can speak from the heart, to know Sarah is to love her. I really treasure the time we spent and think of her often. She is and always be, my shining light.
    Sherry

    • Sherry-
      And thank you for your kind message — we are feeling a nice collective boost of well wishes and kind thoughts. Sarah has been extremely happy to see all of them, thank you! – Rob

  5. Thank you for this story. I have lived with lupus for over 40 years and found a doctor just 20 years ago that told me that he had treated and studied many lupus patients but he had not lived it. He said we needed to be partners in my treatment and I am so grateful for his words of advice. I pray for you and your wife. Yours in the fight against LUPUS.

    • Anna-

      Thanks for much for your inspiring words — good to hear folks managing through this with long lifetimes. You’re absolutely right about the patient/doctor connection – very vital. Best wishes – Rob

  6. Thank you for sharing this inspiring story, Rob. I have lived with lupus for about 25 years and understand well the ups and downs. With Sarah’s positive attitude and your loving support, may you continue to have a full life together, enjoying life’s many blessings and each day you have together.

    • Thanks for the support Connie – keeping a positive attitude is definitely key. Hoping we’ll be able to see a new wave of meds beyond Benlysta that have higher effectivity in our lifetimes. Many medsci companies seem to have new ones in development – including Immunomedics, so there’s that to look forward to as well. Thanks again for posting! – Rob

  7. Rob, thank you for sharing your story. Most of the time, we go through life immerged on our professional duties without stopping to take a detailed look at the world around us while taking a very deep breath. Reading your blog has been to me the deep breath that I needed today. We are blessed to have people like you and your wife who inspire us to cherish and rejoice life one day at the time. Blessings!!

    • Alvaro – photos do have that ability to remember a moment or literally stop, freeze frame it for us, don’t they? It is important to stop down and remember what’s really important. What’s also important is the collective group of friends/supporters we’re finding online esp. w/ respect to lupus as well. Thanks for the kind words! – Rob

  8. Pingback: Living With Lupus: Not Just Another Birthday « Rob Mayeda’s Blog « Eclectic Me

  9. Does anyone who’s read this article live in Arizona? I ask because I lived here for 7 years with no diagnosis, not even a peep that I could have lupus. Then I moved to the Bay Area. Within just a few months I was told I had Lupus, Fibro and Sjorgens. The medical community in the bay area is totally on top of these diseases, its amazing! Support groups, fundraisers, information sessions by doctors. But here’s the kicker: I moved back to Arizona and no one here wants to treat you if the word fibro comes up. Most doctors simply will refuse to see you. The Lupus Foundation of America’s Arizona chapter shut down, and there are no medical run support or information groups in the entire Phoenix area. There are less then a handful of support groups for any autoimmune disease and those are all run by people like me, patients.
    My point is the difference between information and help available between the bay area and the phoenix area are like night and day. If I can spread the word and help with the dependency then i will.
    Thanks for writing this Rob. Your wife sounds amazing!

    • Sommer-

      Thanks for posting… here are a few links in addition to what northernnarratives posted (www.fmnetnews.com).

      http://www.lupus.org/webmodules/webarticlesnet/templates/arizona_support.aspx?articleid=2072&zoneid=506
      http://www.rheumatology.org/directory/city.asp?hCountry=USA&cbxPediatric=&cbxPatientCare=&city=Phoenix&state=AZ
      http://www.lupus-az.org/

      Sarah says there should be a health psychologist should be able to give her referrals in the area as well as provide individual support.
      Its really unfortunate to hear how lacking services appear to be in Arizona. I remember going to school down in Tucson and the UMC there at the University of Arizona was an excellent facility but of course I knew nothing of lupus at the time and don’t know how well they provide services down in Pima County. Seeing that you’re north in Maricopa County (?) -> it still surprises me there’s not more done around Phoenix/Tempe/Scottdale/Glendale. Hopefully some of the links above will help in some way – keep us posted. – Rob

      • Thank you for the links! I will pass them on to the people in my support group. I think Tuscon has a better support community for auto-immune diseases then the Phoenix area. I think the biggest problem is just the sheer size of the valley. I live on the west side and it takes almost 2 hours to get over to the Scottsdale area. So you can see how having a group on one side of town just isnt enough. But I also believe the problems with health insurance coverage and the amount of support the medical field gives are problems as well. I just keep comparing Phoenix to the Bay. There was always a support group or medical type meeting being held near Stanford. I think I attended something at least twice a month. The awareness there is huge. Out here, it is very small. Thank you so much for the help and listening to my rants. 🙂

  10. I hope one day I can meet someone like you. It’s unbelievable to think there are men out there that can love a woman as much as you do…especially one that struggles with this disease. Thank you for giving me hope that I can find love like this. I hope you guys have so much more fun and she changes the world with her ideas.

    • Alaina – There are good people out there who won’t run away when someone they love has a terrible illness or other condition. I didn’t when I found out when we were dating very early on. Sarah’s honesty about it impressed me and humbled me at the same time. Maybe she worried the same re: me wanting to leave. But I will say those people who run away at such news aren’t the type of folks you need in your life. Rest assured you’re part of the greater lupus community and stories like ours are more common than they may seem. Be strong and live your life well and good things will come your way before you know it. I too hope Sarah’s research will lead to positive benefits for those living with lupus. Thank you for liking the article! – Rob

  11. I appreciate you sharing your story. I was first diagnosed with sjogren’s and fibromyalgia 6 years ago, and several months ago diagnosed with lupus. I always experience great fatigue, have low grade fevers, aching joints, and mouth ulcers at times. At this time, I must be having a flair, because I can barely do anything without needing to lay down and rest. I am 58, and had to retire early as a special education teacher of 15 years due to pain, and extreme fatigue, and short term memory loss. Can you explain to me how terminal this disease is for many of us?
    Thank You
    Susan. P.

    • Susan-
      First, I hope you’re doing better sooner than later… make sure you’re getting plenty of rest – to answer some of your questions I deferred to Sarah who relayed this, “…Lupus is terminal n about 10 % of cases, usually from lupus complications and organ involvement. ” So thankfully its a relatively low percentage but a high percentage (from what I’ve read on http://www.Lupus.org / LFA site) of lupus patients have a wide variety of active symptoms. The LFA website is a tremendous resource that will hopefully answer more of your questions, plus they have a great bulletin board there as well. I hope you have good treatment and support centers where you are? Best wishes to better health soon – Rob/Sarah

  12. Rob;

    It will not be easy but it is certainly worth it. My wife was diagnosed with Lupus at 19 and told me before we were married (it did not matter to me). She survived Lupus for three months short of 54 years (and survived me for 6 weeks short of 50 years). She went through many flares some very bad and some just bad) and remissions but we raised three children and had many good times. She passed away on Good Friday at 1:43 (so I told her that she was the ‘good thief’) from massive organ failure due to lupus and a few other things. May you be as fortunate and lucky as I have been in the battle against lupus. She kept her spirits up and was very active such that most people did not know she had lupus and I wish the same for Sarah and you.

    Raymond

    • Thanks for sharing your story Raymond – very inspiring to hear who people live their lives to the fullest despite the odds. We try to keep the ‘big picture’ in mind especially on chemo or down days, it does make it tough. Hearing stories like yours definitely provides support/encouragement to keep a hopeful view on the *good* times that also will come in the future as well. Thanks for posting Raymond and for the positive thoughts/wishes – they really do mean a lot, thank you.

  13. I am amazed and inspired by this story. I thought I would share it with everyone can maybe understand a little bit better. What a strong amazing woman. I wish I could be like that. 🙂

    • Thanks so much! Sarah is certainly is an overachiever — and managing a PhD program at the same time… pretty incredible, I don’t know that I could manage nearly as well. Thanks so much for reposting/sharing the blog. Hopefully we’ll have a follow up soon as Sarah nears the completion of her program and we eventually have the survey results written up in a peer reviewed journal. Thanks again! – Rob

  14. i am so happy for you and Sarah. your story is amazing and a wonderful inspiration to me and i know many more with these awful diseases. unfortunately my story is not a happy one. not only do i have Lupus, fibromyalgia and sjogrens but i have three herniated discs and have had severe hypertension since i was 24. i am 49 now. my Lupus flares haven’t been severe in a couple of years but they are frequent. my fibromyalgia is constant. i know that stress is my number one trigger. my husband also has many health problems and has had 6 major surgeries on his back fixin to have his seventh. he is 100% disabled. we have lived in poverty all of our lives. before he was hurt and i got sicker (didn’t know i had Lupus at that time) we owned a landscape business and a remodeling business. we also ran a part time youth ministry. we put two of our kids through private school and were starting to see our way out of poverty. then everything come crashing down. it seems our hard work hurt ken and did more damage to me from working in the sun. my husband makes $915 a month. i am waiting for my hearing for ssi. i tried to get my disability way back when i got sick but hadn’t been diagnosed at the time. with his workers comp settlement we bought a house and installed heat pumps. ken mortgaged the house a couple of years later in order to start a recording business. to try and get us back out of the financial problems. but the timing and area were wrong so it failed. we had to sell our equipment. now both of us are going through rough times with our health and our life seems to be falling apart around us. between the two of us we can’t manage to accomplish anything. the stress and hopelessness of our situation just makes the health problems worse. we are living in despair. we had managed to pay our bills and function until our electric co sent us a bill for $1700. we were paying our bill every month but they had been underestimating it for a very long time. now we haven’t had electric in 7month’s. we’re total electric.

  15. sorry this is so long. to finish my story: we got behind on our mortgage and overdrafted our bank account trying to pay this bill. everytime we try to do something to get out of this mess our health get’s worse. God bless you both for being an inspiration. i wish you the best!

    • Retta- thanks for sharing your story… I know so many people are both being hit by the ridiculously high cost of healthcare these days and the absolute lack of support on the work/economy side of things … is just a perfect storm of misery for many people living in the country today. You still have each other to carry through the rough times and one day the good times will somehow and someway find their way back into your lives again. Stay strong and thank you for liking the blog post, wishing you both only the very best. – Rob

  16. thank you for your encouraging words. right now we are starting to plan a support group and events to raise money for people in our area who are afflicted with Lupus and other related diseases. it won’t solve our problems but it will feel good to help others.

    • Thank you as well Vivian. It feels good to know you’re in some way inspiring other coping with similar issues or know someone else who is. – Rob

  17. What an amazing testament of your love and your wife’s bravery through this disease. I am a mom of 3 young boys and was diagnosed 5 years ago. Life gets hard but when we (Sarah included) look at the love surrounding us we can’t help but stay positive and feel blessed. 🙂 Thank you for sharing your heart. I can’t wait to share it with others.

    • Please do share with others… And thanks for sharing your story too Tonya. Good to know you’ve got family support there… We don’t have three sons but three Cavalier King Charles Spaniels who do what they can for some support/love.

  18. Wow! I watch you on the weekends and I thank you for sharing your, and your wife’s story! I too suffer from severe Lupus, effecting several systems (heart, lungs, brain, and blood), but I won’t bore you with that. I know this is an old post, but I stumbled upon this via a FB post by your wonderful wife (thanking you for your support and love of her), and I felt moved to add my two cents (LOL!), which isn’t much, really, other than to say thank you for getting the word out. But to also say that I know how hard it is, and can be to be a spouse of someone living courageously with lupus. I call people like your amazing wife “Lupus Warriors”!

    Outreach is very much needed regarding this disease, as well as support and services. This is why I started my own foundation (after not being able to find any real and meaningful resources and help besides LFNC, but they’re just too far away for me – I’m in Contra Costa County). We’re brand new, still getting started and will have our first fundraiser in May – I’m so excited! Here’s our info:
    The Butterfly Project for Lupus Foundation
    http://thebutterflyprojectfoundation.blogspot.com
    http://www.thebutterflyprojectfoundation.org (site under construction)
    and you can find us on Facebook too!
    my personal blog, which chronicles my story and journey is:
    http://princesstinybutt.blogspot.com

    Thanks again for sharing your story!

    • Thanks for your support and sharing information on your sites! We’ve appreciated the support and have some exciting news regarding Sarah’s ongoing research for her PhD project which I hope to share in the blog soon. – Rob

  19. I am cheering you on, Sarah, as you earn your Ph.D.!! You both live with grace, courage and strength — thank you for sharing the inspiration.

    • Thanks Edie! And thanks for the support — the survey data is being crunched right now. Will keep everyone posted on the findings as soon as the work is complete.

  20. I too am living with Lupus (diagnosed at 26) and like the idea of check list to mark all of the important accomplishments one may have made. This is a nice reminder that even the midst of the chaos of living with Lupus, those we love are indeed there in sickness and in health – reminding us that life and goodness can coexist.

    You have inspired me to make a list for myself this year as I celebrate my 43rd birthday. Thank you for this post and may blessings continue to light your journey – Meies 🙂

    • Sorry it took so long to reply – just saw this now! Thanks so much for sharing your story…and its inspiring to see how you are keeping a positive attitude on things, living your goals and dreams despite what Lupus throws your way. Congrats on your 43rd birthday – hope this year is wonderful and you continue to reach more accomplishments and goals in the years to come!

  21. Amazing story! I too was diagnosed at a young age with Lupus- I was 11. A year later I was diagnosed with Lupus nephritis and have had many rounds of chemo . I had a great 9 year time period without disease activity but now over the last 7 years I flare every 2 and currently am trying ACTH injections for my nephritis. Your wife’s story reminds me so much of my own. And there’s nothing like not having a supportive spouse. It means so much to have such a understanding person in one’s life.
    THanks for sharing your story. And thank you to your wife for continuing to fight for herself and all lupus patients! I wish her nothing but good health!

    • Dina – there are many parallels with your story and my wife’s – being diagnosed at an early age like yourself. Hopefully things ease into a remission/calm phase again… how are the ACTH injections helping (at all, any?). Keep your positive attitude going and thanks for also inspiring us with your story … we wish you too the best of health and bringing awareness for Lupus as we approach Lupus Awareness month next month. Thank you again!

  22. Thank you so much for sharing your wife’s amazing story. I’ve been fighting this evil illness for several years with little acknowledgement from friends/family of it’s potential severeness. Most people can’t “see” it, so they either choose to ignore it or choose not to believe it is real. Please pass along my admiration to your amazing wife for all she is doing. Kudos to you for being a wonderful, supportive husband and advocate!!

    • Karen – thanks for your kind comment and hope the illness will be a little less evil for you in the coming years… I can only witness the unfair variability of Lupus — Sarah manages it somehow — I don’t think I would do nearly as well as she does… Hopefully future generations of patients will benefit from surveys like the one Sarah is creating to establish more immediately effective treatment plans… And hope new meds come online soon – there seem to be many in the pipeline thank goodness – Rob

  23. Rob – found link to this blog entry on a lupus site I frequent and I have to say you sound like a wonderful husband. I shared this with my husband and he appreciated reading from someone that understands how he feels. I just began Benlysta treatments for my “mild” (HA!) lupus and my husband are quite hopeful that this will be what we need to continue to fight! All the best to you and Sarah in your journey.

    • Debbi – thanks for your comment! Wishing you well on the Benlysta treatments – would like to know how effective they are for you if you don’t mind sharing? Sarah’s lupus seems to be in same level of activity… But have not gone that route yet. Best wishes always and keep in touch! – Rob

  24. There was a reason you and Sarah met. God saw fit to put you two together to heal others mentally, spiritually & emotionally. I was diagnosed almost four years ago & the transition from being healthy & mobile has been very difficult to say the least. Sometimes I think I may have had this disease in my childhood because of the unexplained pain, swellings & flu like symptoms throughout my life. A story from a loved one is both inspiring & revealing. It lets us know your fight against Lupus is just as real & mighty as your wife Sarah’s. I think it’s great she is getting her Phd in the field she has been diagnosed with. I also thank you for the encouragement as a divorced mother of three. My children are adults now, but it was very difficult raising them by myself. But to know there are men our there who accept women with Lupus very encouraging woman. The Lord has blessed me with a wonderful man who looks beyond my disease & loves all of me. The Lord sent Kin to me almost two years ago. He was my first love in high school & we lost contact after a few months when someone trashed my letters to him & his letters to me while he was away in college. But, thirty three years later God has brought us together again. Men like you & Kin are sent from God. Thanks for being courageous & writing this blog. I too, feel birthdays are much bigger blessings than most people believe. It’s the believing that makes them more special. They are even more miraculous & wonderful for those with Lupus. Each time a person with Lupus celebrates a birthday it should be celebrated highly. God bless you Rob for this article & God bless you Sarah for being the inspiration of this blog! I will pray with & for both of you, as well as other people with Lupus & their friends & family. Blessings & Miraculous findings for Sarah’s LAS research.

    • Tammi – what a tremendous story — and so glad to read how you’ve managed despite all that lupus throws our way. You clearly haven’t let it stop you from what’s most important to you, and kept positivity in your life and now have seen it rewarded with the right people who are are the best of friends and more meant to share their lives together. Your story is one I’d like to read more about one day, thanks again for connecting here and sharing such an inspiring story! – Rob

  25. Thanks for sharing this beautiful story about your wife Rob. I was just diagnosed this year, in late August and it requires so much to find everything else out that pertains to labs, mri’s and you name it! I have had many crying episodes wondering how I am gonna get through this financially and raise my 2 children too. I was in Dental school and worked full time and being a full time mommie until my chronic fatigue and patches on my face got me to finally break down and go to the doctor. I can’t work now so I can’t help my family out and my husband is 4000.00 over the state guidelines to help us out at all!! Talk about swallowing some pride to evenjust check on that. I had been dealing with patches on my face for 3 years and never went, now I wished that I had. The two of you are a beautiful couple and I have enjoyed looking at all of your photos too. Hugs and God Bless, Cindie

  26. I was diagnosed 7 yrs ago. It was a struggle for me,but my husband was my gaurdian angel and stays by my side. Ive been so blessed thru my journey. My husband found out that beauty and fashion is my passion in everyway,it takes my mind off the lupus. I was blessed to have my first fashion show in 2011 it was sponsored by oldnavy,marshalls,tjmax and more. Now im becoming a founndation ,the name is “the livelife foundation”.i hope u continue to reach for the stars in your journey and never give up and most of all livelife.

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