Randy's Rally Against Lupus
Donation protected
Hey guys,
I just want to start of by saying thank you for everyone and everything people have done for me so far and the amount of support and prayers have been very helpful.
This is not a plea of anything, just me explaining and telling everyone about my situation at one time is easier on me and less stressful when asked a million questions, as if I'm being interviewed to become the president.
Story-
As few of you know in June 2010 (almost 6 years ago) I was diagnosed with SLE Lupus. I say few people know because I wasn't one to run around and look for the sympathy of others because I was dealt a bad hand of cards. Also, at that point the mind of the typical 8th grader would never really understand so I never mentioned it to any of my friends or anything and just said I was "sick".
For those who don't know lupus is a autoimmune disease and is very common among women and not seen often in men. (Yay me) Some have it worse than others. Some refer to it as a hidden illness because the person doesn't actually look "sick". With Lupus your immune system is over active and instead of just attacking the bad cells like a normal body, it tries to go above and beyond and just starts attacking everything and effects major organs and other parts of your body. It's complicated in a sense so in short and sweet way "my body attacks itself because it too active."
Okay now that we got passed all the boring stuff I'll get into the current situation. If you kept reading thank you and sorry for it being long I don't want to miss anything.
After my first "flare" I was in remission for about 5 years, which is why all of this seems to be shock to people because I've been "healthy" for so long which is why people tend to refer it as a "hidden illness" as I stated above.
Fast forward to November 2015. Thanksgiving. First sign that my lupus was starting to take back over. However, to me to seemed to just be a flu or cold and didn't think much of it. I was hospitalized that night with what believed to be the flu. From there I noticed I never really felt "100%". Fast forward to December 2015, seem to be getting sick again, could be just a flu or cold, hospitalized again, got my meds right felt better moved on. But again I still didn't feel "100%". At this point I believe it could just be stress from a relationship or work or just simply fighting a flu that's been lingering. For the next 3 months, I started to notice mild symptoms, a little bit of arthritis and such but they all seemed to go away quickly and never held me back from anything really.
March 10th, 2016 - March 14th, 2016
The turning point. I remember texting one of my best friends from my bed who was waiting to hangout that night told him "I couldn't walk". It felt like I ran a marathon and could not move. I had no muscle strength, fever, chest pains, joint pain. So we call my dr and he tells us to come in and it's probably a lupus "flare up". I spend 4 days in the hospital. After high dose steroid treatment I begin to feel better and I am able to go home. That night and the next day I noticed my leg starting get swollen and begin to hurt.. The worst pain I've ever had. Many of you know my pain tolerance is very high so having me in tears because of the pain was alarming.
March 16th, 2016- March 19th, 2016
My dad takes me back to the hospital where they suspect I formed a DVT (blood clot) in my leg but never really were able to find it. Which is scary because blood clots can kill you if they break off and travel to your lungs or heart. Which they believed could have happened and my body dissolved fast enough. Not sure I haven't gotten much straight forward answers.
I was out of the hospital for about a week because they believed to have found the issue and I would recover at home. Again, I didn't feel like I was "100%" then again being in a hospital for 11 out of 12 days will do that to someone. Anyways, a few days has passed and I still haven't seen much improvement but I did see some.
March 29th, 2016
My day is going along fine and well. Until, I got home. Felt like I was hit by a bus. Keep in mind I'm still recovering from a blood clot and I still have pain in my legs and I use a walker to get around. Mainly for my safety but also because I can't really walk. As I sit on my couch with my dog, who has been some of the best company ever, I start to notice my heart race which is weird because I'm just sitting on the couch watching Netflix. Suddenly, I start getting this weird headache I've never really felt before. Then starting getting a little light headed. I called my dad to see when he'd be home because something didn't feel right and he should be home around this time. My luck it's pouring rain and he's stuck in traffic. Suddenly I can't see my dog. He's laying on me but I can't see him and I notice my vision is starting to fade and I can feel my phone in my hand but I can't see it. I started losing my vision and that was probably one of the scariest things I've ever experienced. I call 911 and try to remain as calm as possible as I'm starting to feel a stroke or something worse come on and I'm home alone.
First time I can say I feared for my life.
March 30th, 2016 - currently.
If you're still reading this I appreciate it and I know it's long but again I think it'll be easier if everyone is informed and on the same page so I get into detail while trying to make this enjoyable to read (with my mild sense of humor). This part is VERY confusing so please bear with me.
After making sure my lungs and everything were clear of a clot and my life wasn't at immediate risk at the moment I was moved back to Miami where my specialist is so I can be under the proper care and try to tackle this whole situation.
At this point, I feel terrible putting through friends and family through this and like I said I'm always one to lend my hand out no matter my situation so it's been hard for me to not be able help. The hardest was having my mom here on her birthday while I lay in the bed, immobile due to all the pain. I try to tell her she can spend the night at home and I'll be alright for the night but she's stubborn. I don't like seeing my parents in pain as I can only imagine what it's like to see their son like this. It's been hard. I felt like giving up but then that would mean I failed so i couldn't do that and promised myself I wouldn't. I'm already in pain might as well get a reward from it.
After many tests, hair pulling and having a different Dr come in and try to figure out what's going on everyday, I can present only things I know and will update when they come in.
As of now they are treating me for a lupus flare up. Which requires me to undergo 6 months of chemo. Yes chemo is chemo and it will beat the crap out of me but its not as harsh as cancer chemo.
However we are still trying to figure out why there is bleeding and bruising inside my legs and why my body is retaining so much fluid. ( could be another problem we haven't figured out quite yet).
As of now, I still need assistance getting out of bed and getting dressed and such which sucks because Im 18 almost 19 and I shouldn't have to rely on someone pulling me out of bed or helping me walk. I try to do as much as I can on my own as I feel i put so much on everyone already that I don't want to overwhelm them. There is a long road to recovery and I'm prepared for it and I appreciate all the love and support so far.
Thank you all for reading and if you'd like to help out I set up a gofundme to help with the bills that were thrown onto my parents.(They don't know I'm doing this and I think it would be a good surprise and it would help me knowing I can still help them) With my birthday approaching on the 22nd, Id like to be able to take them out as they have done enough for me.
This isn't a plea for help, this me getting my story out to everyone.
Remember to cherish everything you have now and never take anything for granted. Things can change in a matter of seconds. A little over a month ago I was walking, running, working, and preparing to start my dream career in law enforcement. As well as playing for one the best paintball organizations, Palm Beach Vipers, for a second season. As of now everything has been put on hold.
Drs are saying it's going to take time and at this point it's a waiting game and we will take it day by day.
So hug your kids, hug your parents, hug your dog, hug your turtle, hug yourself. Be grateful for what you have.
Donations will be used to help with medical expenses and treatments
I just want to start of by saying thank you for everyone and everything people have done for me so far and the amount of support and prayers have been very helpful.
This is not a plea of anything, just me explaining and telling everyone about my situation at one time is easier on me and less stressful when asked a million questions, as if I'm being interviewed to become the president.
Story-
As few of you know in June 2010 (almost 6 years ago) I was diagnosed with SLE Lupus. I say few people know because I wasn't one to run around and look for the sympathy of others because I was dealt a bad hand of cards. Also, at that point the mind of the typical 8th grader would never really understand so I never mentioned it to any of my friends or anything and just said I was "sick".
For those who don't know lupus is a autoimmune disease and is very common among women and not seen often in men. (Yay me) Some have it worse than others. Some refer to it as a hidden illness because the person doesn't actually look "sick". With Lupus your immune system is over active and instead of just attacking the bad cells like a normal body, it tries to go above and beyond and just starts attacking everything and effects major organs and other parts of your body. It's complicated in a sense so in short and sweet way "my body attacks itself because it too active."
Okay now that we got passed all the boring stuff I'll get into the current situation. If you kept reading thank you and sorry for it being long I don't want to miss anything.
After my first "flare" I was in remission for about 5 years, which is why all of this seems to be shock to people because I've been "healthy" for so long which is why people tend to refer it as a "hidden illness" as I stated above.
Fast forward to November 2015. Thanksgiving. First sign that my lupus was starting to take back over. However, to me to seemed to just be a flu or cold and didn't think much of it. I was hospitalized that night with what believed to be the flu. From there I noticed I never really felt "100%". Fast forward to December 2015, seem to be getting sick again, could be just a flu or cold, hospitalized again, got my meds right felt better moved on. But again I still didn't feel "100%". At this point I believe it could just be stress from a relationship or work or just simply fighting a flu that's been lingering. For the next 3 months, I started to notice mild symptoms, a little bit of arthritis and such but they all seemed to go away quickly and never held me back from anything really.
March 10th, 2016 - March 14th, 2016
The turning point. I remember texting one of my best friends from my bed who was waiting to hangout that night told him "I couldn't walk". It felt like I ran a marathon and could not move. I had no muscle strength, fever, chest pains, joint pain. So we call my dr and he tells us to come in and it's probably a lupus "flare up". I spend 4 days in the hospital. After high dose steroid treatment I begin to feel better and I am able to go home. That night and the next day I noticed my leg starting get swollen and begin to hurt.. The worst pain I've ever had. Many of you know my pain tolerance is very high so having me in tears because of the pain was alarming.
March 16th, 2016- March 19th, 2016
My dad takes me back to the hospital where they suspect I formed a DVT (blood clot) in my leg but never really were able to find it. Which is scary because blood clots can kill you if they break off and travel to your lungs or heart. Which they believed could have happened and my body dissolved fast enough. Not sure I haven't gotten much straight forward answers.
I was out of the hospital for about a week because they believed to have found the issue and I would recover at home. Again, I didn't feel like I was "100%" then again being in a hospital for 11 out of 12 days will do that to someone. Anyways, a few days has passed and I still haven't seen much improvement but I did see some.
March 29th, 2016
My day is going along fine and well. Until, I got home. Felt like I was hit by a bus. Keep in mind I'm still recovering from a blood clot and I still have pain in my legs and I use a walker to get around. Mainly for my safety but also because I can't really walk. As I sit on my couch with my dog, who has been some of the best company ever, I start to notice my heart race which is weird because I'm just sitting on the couch watching Netflix. Suddenly, I start getting this weird headache I've never really felt before. Then starting getting a little light headed. I called my dad to see when he'd be home because something didn't feel right and he should be home around this time. My luck it's pouring rain and he's stuck in traffic. Suddenly I can't see my dog. He's laying on me but I can't see him and I notice my vision is starting to fade and I can feel my phone in my hand but I can't see it. I started losing my vision and that was probably one of the scariest things I've ever experienced. I call 911 and try to remain as calm as possible as I'm starting to feel a stroke or something worse come on and I'm home alone.
First time I can say I feared for my life.
March 30th, 2016 - currently.
If you're still reading this I appreciate it and I know it's long but again I think it'll be easier if everyone is informed and on the same page so I get into detail while trying to make this enjoyable to read (with my mild sense of humor). This part is VERY confusing so please bear with me.
After making sure my lungs and everything were clear of a clot and my life wasn't at immediate risk at the moment I was moved back to Miami where my specialist is so I can be under the proper care and try to tackle this whole situation.
At this point, I feel terrible putting through friends and family through this and like I said I'm always one to lend my hand out no matter my situation so it's been hard for me to not be able help. The hardest was having my mom here on her birthday while I lay in the bed, immobile due to all the pain. I try to tell her she can spend the night at home and I'll be alright for the night but she's stubborn. I don't like seeing my parents in pain as I can only imagine what it's like to see their son like this. It's been hard. I felt like giving up but then that would mean I failed so i couldn't do that and promised myself I wouldn't. I'm already in pain might as well get a reward from it.
After many tests, hair pulling and having a different Dr come in and try to figure out what's going on everyday, I can present only things I know and will update when they come in.
As of now they are treating me for a lupus flare up. Which requires me to undergo 6 months of chemo. Yes chemo is chemo and it will beat the crap out of me but its not as harsh as cancer chemo.
However we are still trying to figure out why there is bleeding and bruising inside my legs and why my body is retaining so much fluid. ( could be another problem we haven't figured out quite yet).
As of now, I still need assistance getting out of bed and getting dressed and such which sucks because Im 18 almost 19 and I shouldn't have to rely on someone pulling me out of bed or helping me walk. I try to do as much as I can on my own as I feel i put so much on everyone already that I don't want to overwhelm them. There is a long road to recovery and I'm prepared for it and I appreciate all the love and support so far.
Thank you all for reading and if you'd like to help out I set up a gofundme to help with the bills that were thrown onto my parents.(They don't know I'm doing this and I think it would be a good surprise and it would help me knowing I can still help them) With my birthday approaching on the 22nd, Id like to be able to take them out as they have done enough for me.
This isn't a plea for help, this me getting my story out to everyone.
Remember to cherish everything you have now and never take anything for granted. Things can change in a matter of seconds. A little over a month ago I was walking, running, working, and preparing to start my dream career in law enforcement. As well as playing for one the best paintball organizations, Palm Beach Vipers, for a second season. As of now everything has been put on hold.
Drs are saying it's going to take time and at this point it's a waiting game and we will take it day by day.
So hug your kids, hug your parents, hug your dog, hug your turtle, hug yourself. Be grateful for what you have.
Donations will be used to help with medical expenses and treatments
Organizer
Randy Davis
Organizer
Pompano Beach, FL
