So I finally made the decision to start a blog that showcases my everyday struggles with Lupus. It’s definitely been a long time coming, and while I am a bit nervous to communicate my ups and downs, I KNOW that there are Lupies out there just like me that perhaps just need some encouragement every now and then, someone to talk to, or maybe even some updated information on Lupus research.
Any who, here’s a bit about my history with SLE (Systemic Lupus Erythematosus). During the fall semester of 2009 (I can’t believe its been that long), I began to feel consistently sick. It seemed that I’d caught the flu and was just not recovering from it. On top of feeling ill, I slowly began to develop joint pains. Over the course of 7 months, I got progressively worse–I was ALWAYS tired, I needed help doing everything from walking up and down stairs to getting dressed, and at 5’8 and 117 pounds, I was severely underweight.
I know that you’re probably wondering why I suffered for so long without going to see a doctor…well, unfortunately, I did not have heath insurance at the time. Thankfully my manager (yes, I was working and going to school full-time during this entire ordeal!) fought for me to get insurance. When I finally had the opportunity to go in and see a doctor, he ran tests and called me back several days later with some news. According to him, it was clear that I had an autoimmune disease but he was not a specialist and needed to refer me to a physician who specialized in autoimmune diseases. At The Hospital for Special Surgery (NYC), I met my rheumatologist who ran even more tests and eventually diagnosed with me with Systemic Lupus Erythematosus.
Since then, it has been a LONG journey filled with some good days and some bad days. I’ve gone from refusing to take my medication (“This isn’t a disease. I’m going to pray and it’ll go away.”) to finally reaching acceptance and doing everything in my power to live the healthiest lifestyle that I can.
I’m sure that there are many of you out there that may be in my position (7+ years post diagnosis), as well as many of you who are right at the beginning of this journey, not knowing where to start, how to cope, and “how long this is going to take to go away”. Regardless of where you are, I look forward to sharing my experiences with you and hopefully making this walk just a bit more enjoyable.
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©joezettesjourney/Feb2017
Joezette's Journey: My Everyday Walk With Lupus 
Keeping all the medical check ups are really important, also the medication.
When sister is so unwell she can’t organised anything, so someone has to step in and arrange the appointments, make sure she goes to them, make sure she takes the medications, and that the right ones are there.
Just recently I looked at my medications I had collected from the pharmacy and I saw they wrong strength even tho the label was printed right. The pharmacist had put the wrong medicines in the packet. I had to phone and arrange to get them changed.
I had to arrange an appointment for my 3 monthly ferritin check as no one has set it up for me.
Also make sure you check the letters from the hospital for the information and that it is correct. Being a patient can feel like a full time job at times. Wishing you all strength and good health!🙏
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Thanks for sharing your journey! I too am a lupus survivor. I was diagnosed with SLE June 2005, and have been up and down ever since. Although this journey have not been easy, I have for the most part kept a positive attitude. However, because I seem to be dealing with more health issues as a result of lupus, my positive demeanor seems to be dwindling down. I am to start Benelysta infusions on next week, and I guess I would say that I am happy and nervous. I pray that it works. Stay strong and encouraged, and I look forward to reading your future posts.
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Wow, thank you so much for sharing this! I am glad to hear that you are beginning the Benelysta infusions soon! Years ago I did a Rituximab infusion treatment and it was so helpful–expensive! But definitely helpful. Please let me know how you feel following the treatment! I will be praying for a successful treatment that provides you with reprieve! Thank you so much for your support, many blessings to you, and please be well!<3
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Wow. That’s very strong and brave of you to share your journey this way. I will definitely follow you. Thank you for doing this. God bless you and all those you love and hold dear 🙏🏾
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Thank you so much for your support!!!
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God bless you and your family as well!!
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My sister has Lupus since she was 17. Now she will be 33 this year….. I was at Woman 24/7 and discover the worrying can cause sickness like Lupus….. When my daughter died in 2001, this could have affected my sister a great deal…… I almost teared😢 I m happy Joezette that you started this blog. I would hear stories how people with Lupus does live normal lives… I see this in you. However when I look at my sister, I see suffering, a SSI check for my mother whose doesn’t really help my sister to help herself. My sister has memory problem along with lots of pain. She takes medicine. But the thing with that, my sister doesn’t go to regular checkups, so……. I was lost before I found Jesus. It hurts me. This is where sometimes I question God……. I know He knows…….. My family is so dysfunctional…… I m a mother, I don’t ever want to imagine doing what my mother does to my sister to my daughter….. My children has special needs and it hurts me when I have to not get them something due to misbehaving…… But just taking their disability check and not taking care of them is wrong……..
I m feeling so convicted because if the shoes were on the other feet….. I believe my sister would have helped me…… But since my mother is her mom, I keep my distance….. I can go on….. Please keep my mother, Annette and my sister Latesha in your prayers🙏😇
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Wow T…thank you so much for sharing! That is definitely a lot to cope with. While you can not control your mother’s actions, I do encourage you to be the most supportive sister that you are able to be to Latesha. You never really know what she is feeling at any given moment and you just might be the person to lift her spirits.
In reference to living a “normal life”, I think I do a good job of acting like I live a normal life. To know more about that take a look at my latest post, “And the Award goes to…” Normal check-ups and medication are mandatory with conditions such as Lupus. Absence of daily medication makes life impossible and consistent follow ups with physicians ensures that everything is working well internally. You never know when/if things may go south. Please please please encourage your sister to schedule an appointment as soon as possible, try her best to live the healthiest lifestyle that she can, and stay encouraged.
You and your family will of course be in my prayers, and I pray that God also bring healing to your relationships!
Thank you so much for reading and commenting! Please subscribe so we can continue to stay in touch and tell your sister (and any other sufferers that you may know) to feel free to reach out to me directly. ❤
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Amen
Thank you and I will
God bless😇🙏
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Love love love this. And I will absolutely share this with my following. Love you and keep being the strong woman I’ve grown to love immensely.
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Thanks so much for your support Jess! It truly means a lot! Love you too!
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Wow
Thanks for sharing. I have an aunt who has lupus ( mother’s sister) and father side they just buried an aunt who had it.
I had the test done for it, negative but i still like to be kept inform because of family members with.
Once again thanks for sharing.
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Hi Vicki! Ofcourse! I am so sorry to hear about your aunt. Did your aunt pass due to her Lupus? I’m glad to hear that your tests came back negative! That’s such a blessing!
Please continue to follow and stay informed. I think it’s so important for us all to be able to understand each other and our stories just a little better. Perhaps my journey will help you better understand your aunt’s along the way…
Thanks so much for reading and commenting and God bless!
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I am so excited your sharing your story because even though I know it reading about it definitely helps me understand more and appreciate your friendship even more. Can’t wait to read more.
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Thanks so much Marvz! I really appreciate that! It really is my hope that I can encourage others while enlightening the people in my life about what I go through everyday. It’s as much for me as it is for others!
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Wow, I’m grateful for your bravery. For your decision to invite others into your journey. Keep fighting, you are not alone!
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Thank you so much Cindy! It’s a bit intimidating, but I’m glad I finally decided to go through with it:)
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