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Ok, so it’s been a year since I’ve truly done a lupus update. I’m not fooling with YouTube! So many questions have been answered and so much has happened during this year so let’s get started.
As most of you know, I was diagnosed with lupus back in July of 2020 after a 9 day stay in the hospital. They found I had suffered 3 mini-strokes that slightly damaged my vision and I have a rare blood disorder that caused the strokes in which I had to do a plasma exchange. All this was caused by my lupus.
Fast forward to today, my blood disorder has stayed stable which means no more strokes. My vision has also gotten better but will not be 100% (it’s at about 90%). However, in February of this year, I began having severe back pain which moved up to my lung. My PCP sent me to get X-rays and finally a CT Scan which then I was diagnosed with a pulmonary embolism. I only spent a day in the hospital but I was walking around with it for over 2 months! I was also told that I have a kidney condition but cannot do a biopsy to confirm because I am on blood thinners. So I am being treated for the condition. Fortunately, my kidneys are still functioning correctly but I am releasing a lot of protein which the treatment is helping.
I am also anemic which had gotten so severe that I had to do iron infusions. After my 5th infusion, I began to feel so much better! And honestly almost back to normal (whatever that is lol).
In the end, we are finally on track to getting my lupus under control. I’ve had to jump through some major hurdles:
• I’ve been through 2 PCPs. One I had to write a letter to because they missed my PE even though I pointed it out in the CT Scan that I read over and over again.
• I’ve been through 2 lupus doctors (rheumatologist). I had to get additional private insurance to secure the one that is best for me. She’s black and has truly been treating my lupus on an individual basis rather than a general basis.
• I’m seeing 4 specialist,s not including my PCP: Rheumatologist, hematologist, nephrologist, and pulmonologist.
I'm thankful for many things
To be able to afford good healthcare and additional healthcare along with mental healthcare. I understand this is a privilege and I do not take it lightly especially seeing all these bills that come in and praising God I only have to pay the difference. You honestly do not realize how unfair the entire healthcare system is until you HAVE to.
My marriage. I complain a lot but am forever thankful that I not only have a partner to go through this with but that he is willing to go through this with me. I also understand this is a privilege. My sickness has taken a toll on our lives and I def cannot imagine being in his shoes. Things are not perfect nor near-perfect but having someone to go through the downs with is a major flex. I sometimes worry about him because he’s the type that will listen and be there for anyone and will not talk about what he’s also going through. He doesn’t complain at all. I mean having a wife that has almost died numerous times would send me to the crazy house 😂 Listen… check on your strong friends.
My children have been troopers. I do not keep anything from them. Although my 3 boys are young, they know when I’m going to the doctor, and when I’m not feeling well. They quickly ask their questions like, “Are you ok?” "You’re going to the doctor AGAIN?” and my favorite from my oldest son, "Are you going to die? Like your head will blow up?” ( because that’s how everyone dies in his head 😂) I answer and they keep it moving to the next thing. My daughter also asks questions and I’m open and honest with her as well.
Friends and family keep me going even when I try to stay away. It’s always those who persist on being in my business, text me super late at night to make sure I’m ok or pop up out of nowhere that annoy me the most but that I am the most grateful for.
Things that help me mentally
I‘m a part of an awesome FB support group that has been really helpful especially during the pandemic. They answer questions and we can have conversations that only we can understand. They are listed below if you need that space.
Selfcare days are so cliche but are so important for me. Sundays have always been my days and will continue to be. I’ve added on getting my nails and feet done consistently (this is a big deal because I’m not that kind of girl), massages along with my typical brunching.
Talking with a therapist has always been important to me. I’ve gone from biweekly sessions to once a month. The anxiety from when I was first diagnosed was debilitating and I had to learn techniques to help calm me. You also do not realize how much the medications from lupus contribute to your anxiety as well. I found my therapist on Therapy for Black Girls.
Being my own advocate is a skill I learned from my mom. I read every test result, every scan, every aftercare summary, and everything that is emailed or given to me. I then research and question it. I am blessed to have a few doctor and nurse friends with who I can ask questions and get their perspectives. If there is something I do not understand, I immediately message my PCP. She also recently gave me her personal number (I’m sure she hates she did that). There are many times that I know I have saved my own life just by questioning.
I'm looking forward to losing all of this weight from my steroids. I am now on a very low dose which means the ugly side effects are gone. I'm not so much worried about how I look with the weight gain (I mean I like the junk in my trunk) but more concerned about the possible health consequences. I have been told that you can help heal your body with fruits and veggies and what you take in and now that my disease is almost under control I am focusing more on changing my lifestyle concerning food. I am not going to deprive myself of the things I want because what would be life but will take in all things in moderation. I however will be focusing on fish options when it comes to meat. I am also looking forward to juicing more. I've found an awesome juicery here in Chicago FruVé xPress Juicery.
So that's it! I tried to answer the questions I get asked most frequently but also if you have more, please feel free to comment or email me!