How Lupus Attacked My Central Nervous System

October 14th, 2017, my brother’s wedding – what an amazing day! We had so much fun and it was honestly the perfect day. I think I danced for 4 ½ hours straight!

A week later I just didn’t feel “right”. The next day October 22nd, 2017, I woke up and couldn’t walk. It was like my brain and my legs couldn’t connect to each other. No matter how hard I told my legs to move, they just wouldn’t do it. It was almost like my legs weren’t my own. I was admitted to the hospital that day and began having testing. Shortly after being admitted I was given three days of IV pulse steroids. That meant 1000mg each day, so paralysis wouldn’t set in. The reason I couldn’t walk was because Lupus had attacked my central nervous system.

I was discharged a couple days later continuing on 60mg of prednisone. Not being able to walk let alone do stairs left a question of what to do when I got home. My apartment has a flight of steps to get in and I was not capable of doing them at all. Friends of ours, who really are more like family, were gracious enough to let us stay at their house while going through this difficult time. Our friends thankfully have a walker and shower chair that I am borrowing while we are living with them. We have been living with them for three months. Because of not being able to walk on my own, I needed help from my loved ones or my wheelchair or walker to get around in any way. It is amazing how quickly things can change. One day you can take a normal shower and the next you can’t even stand by yourself while showering, so you need a shower chair, and that is just one example. Your whole world shifts and you have to adapt. You realize things are not as handicap accessible as they should be or even at all.

I began physical therapy to work on balance, strength and one stair at a time. Yes, just one stair at a time. It has now been three months since this all started, and I am gaining some strength back. I am now able to walk around the house without the walker or wheelchair,  although, if I feel unsteady I have a chair to sit on, things to lean on, or something to grab onto.  Because things are more controlled in the house I feel comfortable without someone or something helping me to walk. However, outside the house I still use the walker or wheelchair because of balance, strength and stamina. Outside of the house, things become more challenging because of  the balance issues and also safety too. I am still not able to do stairs but with a little more time I hope to be able to in the future. Time will tell.

Occasionally I still have days where my brain and legs decide to have a disconnect and not cooperate together, the doctors say this is normal and can continue to keep happening. When this happens there is sometimes no warning and it can be a little scary.

I started a new treatment for the central nervous system lupus. It is a chemotherapy infusion called Rituxan. I received one infusion in December and one in January and won’t receive another infusion for six months. I am now down to 35mg of prednisone, but I can’t go down any further right now because I have had a couple of seizures in the past week. The Neurologist increased my seizure medicine and hopefully this helps.

A stairlift is going to be installed at my apartment soon and then we will move back home. The goal is to continue getting stronger with the help from physical therapy. I eventually want to transition out of the wheelchair for good and just use the walker or cane outside of the house. I feel very lucky considering where I started in October. There is still a ways to go but I am optimistic about the future. Not only did this experience open my eyes but made me realize somethings you take for granted in life. Things can change in the blink of an eye. For me it was something like not being able to walk.

Many of you know that I say that I believe I have Lupus for a reason and I still believe that no matter what Lupus throws my way. Now with these new obstacles I believe I can help even more people because I have some understanding of what it is like to do things in a wheelchair. Things such as sidewalks, parking lots, bathrooms and doorways are not always handicapped accessible. For instance, even if the stalls inside the bathroom are wheelchair accessible the sink, soap and paper towel dispensers are not. Having this new point of view, I now not only want to continue my fight for people with Lupus but for those that continue to live with daily struggles such as being in a wheelchair. I believe that we can improve these situations vastly, even small things to make daily living easier for people. Being in a wheelchair for the past three months I have realized I have gained the attitude of “Oh no, don’t worry it’s fine”, “it’s okay I’ll do it this way” or “I’ll go around”. People who are handicapped shouldn’t have to make excuses but somehow, we do, and it’s just supposed to be okay or is expected. I know that I have only been in a wheelchair for three months and I may or may not have to use it again. However, like I said I still have the sporadic days where the connection is off, and I can’t walk, and the doctors said the lupus could attack my central nervous system again. If it does I will be as prepared as I can. Now the point is, no matter how much or how little experience I have had in a wheelchair I feel like I can help and that is what I want to do. I encourage you to think what it is like for people in a wheelchair and either try to help in any way possible or make suggestions while you are out to a restaurant or somewhere you know there is room for improvement. There is always a way to help someone in the world and now it is time to give back to the people who sometimes sit quietly on the side trying to figure out how to do something by themselves.

“Helping one person might not change the world, but it could change the world for one person” -unknown

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Blood Transfusion and ICU stay

This summer I had a complication after having my regularly scheduled colonoscopy and endoscopy for my Gastrointestinal issues. A few days after my testing I was very weak, light headed and began to have black tarry bowel movements. I know that is something you probably don’t want to hear, but you should know that those are not normal and if you ever have them you should call your doctor immediately. I ended up going to the hospital and was admitted and put in the ICU. They immediately checked my blood levels and gave me oxygen. From just a week before, my blood levels, especially my hemoglobin, dropped from 14 to 8. After testing it again it dropped even further to 7. They figured it was a Gastrointestinal bleed most likely from the biopsies they took during my endoscopy and colonoscopy. Most people don’t have any issue with bleeding afterwards but because I have been on Ibuprofen for my chronic pericarditis (check out my blog post I’m Back for a little bit more of an explanation on chronic pericarditis). The Ibuprofen I was on is a nonsteroidal anti-inflammatory drug used for decreasing swelling and inflammation. However, even though it was helping my heart condition it most likely lead to a bigger problem at the time. It caused my biopsy sites to not heal properly and as quickly as someone who wasn’t on this medicine, like I was, at 1200mg a day. This made it so the biopsy sites kept bleeding causing my blood levels to drop. While in the ICU I got a blood transfusion and oxygen. After having another endoscopy and colonoscopy to make sure that I wasn’t actively bleeding anymore, they just worked on getting my blood levels and compliments (Lupus blood levels) back to normal. It was a crazy couple of days in the hospital, but my blood levels went back to normal and I was finally discharged. It still took a while to recuperate, I was still very weak for a while, but I finally made a recovery.

Please follow my blog at http://www.spreadyourwings4lupus.wordpress.com to get alerts of new posts by putting in your email!

Nonprofit Website: http://www.hopeforlupus.org/

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Name of page- Hope For Lupus Society

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28th Annual Lupus Golf Outing

On July 10th I volunteered for the second time at the Lupus Foundation of Pennsylvania’s, 28th Annual Lupus Golf Outing at Nevillewood Club and Golf Course. This event is to raise money for those with Lupus and honor those who have fought this battle and lost. The day was filled with good company, golfing, raffles, and auctions. The staff at the Lupus Foundation of Pennsylvania put together a great day.

The staff at the Lupus Foundation of Pennsylvania surprised my mom and I with an award, “Change Maker Award, a recognition for the Hope for Lupus Society and the commitment to their patients”. Both my mom and I had no idea this honor was planned. My mom and I both started to tear up but couldn’t completely break down because we were honored and asked to speak about my nonprofit, Hope For Lupus Society. We are very lucky to be partnered up with the Lupus Foundation of Pennsylvania to work together to help those with Lupus, spread awareness and educate others about Lupus. It is great when you find wonderful people that share your passion about something and want to see you succeed as much as you want them to. Shout out to my girls at the Lupus Foundation of Pennsylvania! Keep up the good work and I look forward to what we do in the future!

Please follow my blog at http://www.spreadyourwings4lupus.wordpress.com to get alerts of new posts by putting in your email!

Nonprofit Website: http://www.hopeforlupus.org/

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Name of page- Hope For Lupus Society

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Meeting Ian Harding, Lupus Advocate

I know that I have not written a blog post in a while so I would like to go back to the beginning of May when I had the honor to meet a person that is an advocate for the Lupus community, Ian Harding. Harding wrote a book called Odd Birds, and I was at his book signing and that is where we got the chance to talk a little. I knew this before going out there, but his mother has Lupus and that is one of the many things he talks about in the book. His book is a memoir style book that he ties back to a hobby of his, bird watching. The way he integrates his life memories to a specific bird watching event was very interesting and was something I had never seen before. I thoroughly enjoyed the book and highly recommend it.

When it was finally my chance to meet him, I actually got really nervous! I wanted to tell him about my nonprofit I created, The Hope for Lupus Society, and hand him a pamphlet explaining what my goals are with it. He was very impressed and interested not only in my story but my mom’s, who also has Lupus. We talked for a good couple minutes and I heard a little more about his mom’s journey with Lupus. It is very inspiring to see someone care so much about their mom, like I do, and on top of that do what they can for the Lupus community, even if it is just talking about their family’s story. I want to thank him for everything he’s done and being so nice.

Talking to him and getting my picture with him was a great memory I will never forget. It came as a shock when I later get a notification that he followed me on Twitter! Thank you Ian, what an honor meeting you!

Please follow my blog at http://www.spreadyourwings4lupus.wordpress.com to get alerts of new posts by putting in your email!

Nonprofit Website: http://www.hopeforlupus.org/

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Name of page- Hope For Lupus Society

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Benlysta: what is it and how it works!

Some of you know from past blog posts, that I started a treatment called Benlysta about two and a half months ago.  I have been on this treatment before, but I had to stop due to side effects.  This treatment is given to people who have Systemic Lupus Erythematosus (SLE or just commonly called Lupus).  People that receive this are currently on other medicines to treat their Lupus, but this is just added to their current treatment regimen (for me I am also on a chemotherapy medicine called Methotrexate and an antimalarial medicine called Plaquenil).  Now, Benlysta is the first treatment approved for Lupus IN OVER 50 YEARS!  That is a long time if I do say so myself haha!  This treatment is given by way of intravenous (IV) infusion.  Benlysta cannot be given in pill form because of the complex proteins it is made of.  If these proteins were swallowed they would break down in the stomach before reaching the bloodstream and before being affective; therefore, Benlysta is given through an infusion right into the bloodstream.

Lupus is a chronic auto-immune disease as I have stated before.  Adding Benlysta to your treatment regimen will NOT get rid of Lupus.  In your body, certain white blood cells (WBC) produce antibodies.  Now normally regular antibodies help the body in protecting from foreign invaders.  The way Lupus works is when those cells stay in your body for too long, the cells become harmful.  These harmful cells react with your body in a negative way to cause the disease Lupus.  Also, the harmful cells produce a protein called an autoantibody.    These autoantibodies result by attacking your own body.  The attacking of your own body is what leads to inflamed and swollen body tissue.  In order for the growth of the harmful cells, a protein called B Lymphocyte Stimulator (LBys) is needed.  Benlysta binds to this protein to prevent the autoreactive B cells from forming.  Benlysta is not a steroid like Prednisone, it is a biologic therapy.  Benlysta helps by reducing certain cells in your immune system and by reducing abnormal immune system activity that make the disease active.

The dosing schedule for Benlysta goes as follows: for the first three infusions Benlysta is given every two weeks and then once every four weeks on a continuous basis.  Before each infusion you have to take a Benadryl and Tylenol to decrease your chances of having an allergic reaction.  Most people will take up to a year to see the full benefits of the medicine.  Some people can see improvements as soon as three months! I am close to my three month mark so hopefully I am going to turn a corner soon.

This disease is powerful, both in a positive and negative way.  Now most people are questioning how it affects me in a positive way? It affects me in so many ways but I am survivor!!!  In addition, I feel that I can be an advocate or voice for Lupus awareness so that I can help others with this daily struggle.  Some days may be harder than others and not all symptoms of Lupus can be helped with medicines, but a healthy attitude and being strong minded I believe is half the battle.  If this medicine will help out in the long run so that Lupus doesn’t affect any more of my organs or even helps my joint pain and swelling, then I will consider it a win.  I will take whatever it may give me and be gracious for whatever benefits I may see from this medicine so that I can continue to fight for awareness and eventually a cure for Lupus.

 

Please follow my blog at http://www.spreadyourwings4lupus.wordpress.com to get alerts of new posts by putting in your email!

Nonprofit Website: http://www.hopeforlupus.org/

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Name of page- Hope For Lupus Society

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Lupus And Hair Loss

Hi everyone!

I know a while back, around the time I went into the hospital, I mentioned that I was losing my hair. Well about a year ago, I did lose most of my hair. I even had some bald spots too.  I really didn’t have much hair and I didn’t feel that comfortable with what hair I had left. I always had extremely thick and wavy hair and all of a sudden it became thin to the point where you could see my scalp. I was raised that life is not about looks and I truly believe that because beauty is in your heart, but when you’re used to something for most of your life and all of a sudden it’s gone, it’s a shock. So after a discussion with my mom, I decided to get a wig. After some research, I found a place called “A Hair Boutique” in Shadyside. I went down, had a consultation and ordered a wig. I eventually got another wig too. I ordered both of those wigs in different shades of red because if you know me, I loved my red hair!!! I had red hair for about six years. Then, about a couple months ago my hair started to grow a little and it definitely got thicker again. So right now my wigs are on the back burner while I rock a purple pixie! I eventually hope my hair grows some more. However, I am more than thankful that my hair grew back at all! Going through this experience has really taught me a lot. It has taught me to be ready for anything, to be more understanding, and to be patient. This whole experience has been humbling and I feel sorry for those that aren’t as lucky as I am to have my hair grow back. I also feel very blessed that I was able to get two wigs in the interim. My wigs were awesome and if I ever need them again, I am so glad that I have them. I would like to say to everyone that there are many options out there if you are not comfortable with your situation. Certainly if you are comfortable, then good for you and I’m sure you’re rocking it! The only thing that matters is confidence and if you’re walking around like a rock star, then that’s all that matters. You should feel good in whatever you are wearing or whatever your style is.

 

Please follow my blog at http://www.spreadyourwings4lupus.wordpress.com to get alerts of new posts by putting in your email!

Nonprofit Website: http://www.hopeforlupus.org/

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Name of page- Hope For Lupus Society

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I’m Back!!!!

Hi everyone,

I know it has been a very long time since I wrote one of these. Almost a whole year. Let’s see, since my last post I was in the hospital and on 60 mg of Prednisone and going to be doing a medical withdrawal from Duquesne University. Well I can officially say the Lupus Enteritis that put me in the hospital last March is gone and I am off the 60mg of Prednisone. However, I am still on a medical withdrawal from school. I have been off for 3 semesters now. I miss seeing my friends. In a way it is like my life stopped and their lives moved on without me.

I have not been able to go back not due to the Lupus Enteritis anymore, but because my condition with my heart has gotten worse. If you don’t remember I have chronic pericarditis, which is constant inflammation of the lining of the heart. This inflammation causes me to have constant chest pain and shortness of breath with walking short distances. I have failed multiple treatments for this condition hence why I have not been able to go back to school. My new goal is to go back to school this coming fall! We are still trying to figure out a treatment plan for my heart and my fantastic doctor. Dr. Sokos will continue to help me. He is now putting me on 600mg of Ibuprofen three times a day for a month to see how that helps. I started a new treatment for my Lupus as well. It is an infusion called Benlysta. They tried it once before but had to stop it.  It is the first treatment approved for Lupus in more than 50 years! The doctors hope that the Benlysta will help with my Lupus symptoms and maybe even the heart if we are lucky. If not my pericardium could eventually harden and stiffen. This can make it impossible for my heart to expand when beating. If it comes to that case then the pericardium at that point has to be removed. Now I don’t know about you but when I first heard that I was like “YOU CAN DO THAT!!” and it is probably just as weird to hear for you. Now I am no where close to that point yet. However, if my condition stays at the point I am at right now that is a very likely scenario. For now it is just one day at a time and making the best of each day.

 

Please follow my blog at http://www.spreadyourwings4lupus.wordpress.com to get alerts of new posts by putting in your email!

Nonprofit Website: http://www.hopeforlupus.org/

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Name of page- Hope For Lupus Society

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Handle- HopeForLupusSociety

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Handle- @Hope_For_Lupus