Podcast: Play in new window
Hi everyone – here are the show notes for the very first episode of the new podcast (I am seriously excited!):
Dave: Hi there I’m Dave Graham and this is the Escape from the Grey planet podcast.
Thank you so much for taking the time to listen, I’m really excited to be kicking off this brand new podcast today and I really think that we’ve got such inspirational stuff coming up that when todays show finishes you’ll be wanting to start the next one straight away! And I’m working on bringing you more as soon as possible! I want to hear the next one too – after working on the material for this one, I’m really happy with how it’s come out, and I hope that you are going to enjoy it as much as I’ve enjoyed putting it together.
Today I’m going to be presenting three different stories, from three amazing women, all of whom have faced problems in their lives that I can’t begin to imagine. But their strength and courage – and their attitude towards their problems is incredibly inspiring – and to be honest has made my problems feel insignificant.
The common thread is lupus, a immune system disorder that is a strange and mysterious illness that can have a devastating effect on peoples lives. I do have to point out that none of us are doctors (I’m certainly not trained in anything!) and we cannot give medical advice, so please see a professional if you need it.
Just before we get into the featured stories, I just want to quickly explain the concept of the website and podcasts name in case it’s got you puzzled.
When I decided I really wanted to do these shows, I wanted to have a concept that was different to anything else out there – and true to me, so I came up with this not-too-serious sci-fi theme – like an old b-movie type idea. The concept was that everyone is born on the blue planet – which is a happy place, where there is joy and laughter. But as we go through life, we travel around and some of us end up on the grey planet – a sad, lonely place where there are only negative thoughts and feelings.
Some people get stranded on the grey planet and can’t leave on their own – I’d like this podcast to be my own little rescue mission – my rocket ship that goes to the grey planet, plucks up as many stranded people as it can carry and brings them home. It’s silly I know, but I like silly and I like happy, and I’m not ashamed to be both! I’d love for this podcast to make you feel good, make you think, and if it helps someone, somewhere find the hope and inspiration they need to get through their darkest times, then my job is done. So that is what it’s all about.
If there is anyone out there who is really in their toughest times, if anything that I can present to you here gives you that strength, or makes you feel that other people can understand what you are going through, and that other people have gone through something close to it, even if it’s not the same, but gone through something close to it, and can understand a little of you’re feeling – and that gives you the hope and courage and the inspiration to push on and keep going, not giver or lose hope – I would love for that to be the case. That is what this is all about!
You can check out the site at escape-from-the-grey-planet.co.uk – with hyphens between the words – I know I know it’s a long complicated name, but there you go! Google escape from the grey planet and it will come up!
Ok, no more chat from me, I want to hand over now to my first guest..and she is..well actually I’ll let the tape roll as I explain it a bit better at the start of the interview…ok./..
Talking to Denise about Lupus:
Dave: Ok so here we go! Today I’m going to be interviewing a very special guest, who is someone quite close to home, because I’m actually going to be interviewing Denise who happens to be my wife! So…probably a couple of things we should make clear before we start..we’ve got some other special guests in the room while we’re recording which is three of our four daughters (Nya -10, Naima and Samira – twins of 8 months).
Today I want to talk to Denise about a really difficult time in her life, in our lives that we had, and get her feelings and thoughts on how it was dealing with this really difficult situation and coming through the other side.
So Denise if you could introduce yourself and let the listeners know fo anything they might need to know about you!
Neicey: Ok, my name is Niecey (Note from Dave: I forgot Denise prefers this nickname in the introduction, I guess I was thinking interview means formal!), I have four daughters, Samira, Naima, Nya and Tiana
I also have SLE lupus, I had a kidney transplant in 2009, I had a c-section and part of my intestines removed in June 2012, and i’m also being interviewed by Dave Graham, my husband!
Dave: hah yeah I think we know that! (We were sitting in our kitchen surrounded by our kids, so passing around a microphone and talking about ourselves felt pretty weird!)
Neicey: Well, one of the certain things I think of is one, my daughter Nya, she was born in 2003 and has cerebral palsy, she’s disabled , but she’s fun to be around with and she made me stronger, because she made me learn about patience, and about caring and you don’t need ot be able to walk to be happy about who you are.
I had a c-section back last year in june 2012 where I gave birth to Samira and Naima who you can hear in the background chatting away
Neicey: and after I had the c-section I had surgery, I had part of my large intestine removed because it was glued on to my skin, and that actually explained the pain I’d been having for a couple of years and doctors couldn’t understand why I was having all these abdomen pains. Because of that surgery it made me even more mentally stable and stronger.
Dave: Ok so do you feel that the c-section and bowel removal were the toughest thing you’ve had to go through?
Neicey: I feel that is the toughest thing I’ve had to go through especially emotionally, physically and mentally – because in my body I’d developed very high blood pressure , I felt my body went into shock after having the surgery and I was trying to help my body out of it.
But having my family and my friends supporting me is really what made me better and mentally stronger.
Dave: Can you briefly explain a little bit to the listeners what that situation was like – because there was quite a lot fo things going on, it was quite a difficult and confusing situation with a lotof things happening at the same time. If you could just explain a little bit to the listeners about what that situation was like.
Neicey: Well in the beginning it was a bit hard because I’d just had the c-section and bowel removal and I didn’t know how to handle it at the beginning. I kept on shaking, and it was hard because I felt like I had to push myself mentally to get out of the state of mind of feeling sick, and being sick, so i could be there in the hospital for Samira and Naima. When I also saw Nya and Tiana come, i had to show that I was strong because I didn’t want them to worry about me – because if I show, if it was written on my face that I felt ill – I didn’t want to portray that to them, especially to Tiana becuase she’s a very sensitive daughter, out of all four.
So I felt I had to be strong for them, and they also had to be strong for me.
I was in the hospital for 7 days, but to fully recover after the surgery for my bowel took 6 weeks. To recover from the c-section only took 7 days because I’d done it twice before.
Dave: Ok so obviously that continued to affect you even after you’d come out of hospital. Could you explain to us a little bit about how that extended period of recovery, coming home and having two new babies to look after, how that affected you as well with he problems you were having.
Neicey: With this bowel repair – in a way I had to push it to one side and concentrate about Samira and Naima cause i knew they needed me to help them, cause they had to get changed and get fed and cared for, and the same thing applies for Tiana and Nya. In a way you have to be mentally strong and physically strong after oyu have your surgery becaus eyou can’t let illness pull you down.
It was my will to stay healthy so I could care for them and care for Davey.
Dave: Yeah I need it!
Neicey: I don’t like to think of myself being sick, like when I have a lupus problem or a kidney problem or if I have the bowel surgery problem. I feel that if I feel, or think that I’m sick, it kind of puts a block on what I want to do, and what I want to do mentally. Because if you constantly think that you’re sick the your body will probably take longer to repair. If you think that you are ok the your body takes a quicker time to repair itself and you can go on to be there for other people.
I went in on the 21st June around 11;30 in the morning just to have a c-section and to be out (of surgery, not the hospital!) within an hour – but unfortunately because I had the bowel stuck to my skin and that was very unexpected. When they was doing it I didn’t know what was going on until after the hour and a half then they told me “oh we had to repair your bowel because it was stuck to your skin”.
Dave: I’ll just add in a little bit here because I was in the room as the surgery was being done, and after the babies popped out and we said hi to them, I aksed Denise, as the babies were being taken to the ward, I asked Denise “are you ok if I go with them?” and she said yeah as it seemed like she would just be getting stitched up and then would be down on the ward in about half an hour. But when I went with the babies, about half an hour or so later to see Denise, and you weren’t outof surgery yet, came baout half an hour later and you still weren’t out of surgery, and then came back and you still weren’ t out!
I was dealing with the worry there about you as there was no one there to ask, and I didn’t know what had happened to you and why you were still in surgery when I thought you were going to be out in 20-30 minutes…
Dave: and an hour and half later you’re still in there and I don’t know what’s happening. I’m dealing with that while saying hi to two new babies and knowing that you’ve only seen them , you only got to say hi to them for a second before they got whisked away.
We found out later that the surgeon had to improvise and decide to do it there and then, he couldn’t really get consent from you or anything he just had to go ahead and do it.Anyway..I just wanted to add that bit in!
Neicey: ok Dave!
Dave: Could you say a little bit about your lupus?
Neicey: Yes I have SLE lupus, and I’ve been having lupus for 13 years now. The way I feel about it is that I have lupus but lupus doesn’t have me. I feel that it’s in my bloodbut it doesn’t really affect me and who I am.
And because of that I don’t have much flares of my lupus. Within the 13 years I only had two flares because I have to keep positive. The one I have is SLE - thee;s three types of lupus and it affects every organ in your body including your skin, brain, heart , lungs…well every organ you have.
It really affected my kidneys. Back in 2005 is when the lupus really flared up on me. A what i mean by a flare is that my muscles tend to turn against my body, or your own immune system starts to attack you body, your white blood cells attack your own body as it feels the red blood cells is not ok.
You sometimes look swollen, you get swollen in your ankles, knees , hands, your joints swell up and also your face tends to swell up as well.
Yes lupus can affect every bit, every organ in your body. Like how I have SLE lupus – I feel that I have the disease but the disease don’t have me. I’m sure the same applies to people who have other diseases too…arthritis, hepatitis…
You have to have that state of mind that youhave the illness but the illness don’t have you.
You need to take control of your body and not let the disease or disorder take control of who you are.
Dave: So you don’t define yourself by an illness or a problem?
Neicey: Yes Dave that’s exactly right.
Dave: Thank you to Naima, Samira and Nya for behaving while we were recording!
Neicey: ok thanks Dave, bye!
Dave: Huge thank you to Denise for doing this – she’s private person and it’s a big deal to her to talk about problems like this in public so big thank yous to you!
What impresses me most about how Denise thinks is that she kind of separates her problems from herself – they are something that happens by they are not HER. She doesn’t define herself by her illness. I think this is a great outlook. Denise is the most ridiculously tough minded person I think I’ve ever met…an inspiration to me for sure.
Ok, before I get all soppy, I should probably move on to the next guest. I found Charisma on a facebook lupus group and she immediately jumped at the chance to talk about her experiences with lupus. She also started trying to get other people to take part as well and she was so enthusiastic.
She is perfectly good at explaining herself so I’ll hand it over to Charisma and let her do all the talking and i’ll speak to you on the other side – enjoy!
Charisma on living with lupus:
Hi my name is Charisma, I’m from Chicago, Illinois – aged 27. i was diagnosed with lupus at age 18.
A family friend pointed out the signs of lupus which were joint pains, swelling in the joints, rashes and hair loss. So my parents rushed me to the hospital and I was officially diagnosed in novemeber of 2003. Since then has been a struggle.
Every day is hard to get through without my medications. I have been through chemotherapy, medication regimens which include plaquenil, cellcept (Note from Dave: Denise had a terrible allergic reaction to Cellcept, aka MMF) and prednisolone.
It’s been very hard dealing with lupus – you get down a lot, and the pain and agony it causes – wow …no words to explain it. People really don’t understand.
I’ve also been diagnosed with pulmonary hypertension along with lupus, and on top of lupus I have two other diseases. I’ve been through four different doctors, medications, hospital stays and the list goes on and on.
I have fought through every day to get where I am today – in 2009 I graduated with two degrees in accounting and business management. In 2011 I started my own business with my sister called CJ National Funding.
Also this summer I’m getting married – I’ve been knowing him for four years and I’m very excited, he’s very understanding and patient. (Note from Dave: Congratulations – send us a pic from your wedding day please!)
I try to encourage people to keep going, I try to keep a positive attitude because if you don’t you’re just going to be left behind.
Lupus is such a painful disease, it’s a very silent disease, people really don’t understand it, so how I explain it is: it’s your own body attacking itself. It’s really nothing visible, it’s all inside so I’m so happy that David is doing this recording of people with lupus and the every day struggle and how we get over it.
Me personally, I’m a very determined person, I’ve been paralysed three times and I’m walking. I am totally blind. I am struggling just to get through the days that come my way.
It’s very stressful – its nothing to really brag about, but I just want to get this story out there to let people with lupus know that it is possible to keep living and to accomplish your goals.
Don’t let it stop you.
There’s already people out here trying to stop you - prove them wrong, because they really don’t understand. I just want to let all my fellow lupies know that we are here. You’re not alone. We are all over, we’re on facebook, we’re on twitter we can even be your next door neighbour.
Lupus is such a silent disease that we need to get our voices heard – we need to let the world know that lupus has a voice.
To the people that know someone with lupus, please patient, be understanding. We know you don’t understand it but believe me we are suffering every minute of the day.
So on that note I’m gonna end. I just wanted to share my story and some encouraging words. I hope I accomplished that and I thank you again.
Ok, so thank you to Charisma – I actually didn’t know about half of the problems Charisma mentioned there when I asked her to record this for us, and I respect her acheivements and strength of mind even more now for understanding her story more. I think it’s interesting how different Denise and charisma’s views are, whilst both obviously incredibly strong people, Charisma is more sort of proud and willing to label herself with her illness whereas Denise prefers to distance herself from that label. Of course neither is wrong – it is totally up to the individual to do what works for them and I think this is a really nice illustration of how you can go either way and be just as strong. Thank you again to Charisma and Denise for being so open and willing to share your stories to help others…
Next we are going to hear from Amy. Now her story is a bit longer, s he has recorded quite a lot here and I have not edited it at as I think it is perfectly fantastic. Now once again Amy is perfectly able to tell her own story better than I can but I just want to let you know in advance that before recording this Amy has some surgery on her throat, so her voice is not how it normally would be. So next up is Amy…
Hi, my name is Amy Shields, and I’m telling you a little story regarding my life, and the day it turned upside down. The reasons I’m telling this story is that i’m hoping that my story can maybe help someone out there who is going through the same struggles, or something like this, or just needs to hear that there is hope, and ways to get through the darkness to the light. There is hope, and there is love and so many good things out there – and you wouldn’t think you’d be hearing me say that after all the things I’ve been through.
I remember hearing “You have Systematic Lupus” – I remember hearing those words and feeling as if my world just crashed.
Having suffered with many debilitating diseases I found a doctor who listened to me. His diagnosis was devastating to me. I experienced severe depression when I was told what it was. As I look back on it now, I realise that the fatigue and depression were part of the disease. Once I did some research on the subject of SLE, i felt I had an autoimmune death sentence.
My two sons were approximately 3 and 4 years of age at the time. They were scared and didn’t understand why I was spending most of my time in bed sleeping and just not myself. Just crying and feeling alone, you know, I can’t explain it unless you’ve been through it.
Before my diagnosis I was a very successful career woman in the time share industry. I started when I was 17, I worked hard and studied marketing at college. My plans were to run my own resort one day, and I was fortunate enough to move up the ranks.
I was selected out of approximately 2000 applicants to go to Hawaii to run a resort there, so I left my home and lived there for a year. However I became homesick and decided to return to the mainland. I was financially stable, I’d never really had to worry about money. I pretty much believed in living in the moment and having fun.
I decided to take some time off from work, start a family and have children – now I have two adorable sons. After that I decided to return to Florida with an offer to work that I couldn’t refuse. I’d be able to see my old friends again in Florida and it sounded just right. I started to work and i began to notice that I seemed tired all the time and like I was always fighting a cold.
It seemed to get worse and worse instead of better. I went to so many different doctors and got so many different diagnoses. I had fibromyalgia, I had arthritis, I had the flu, asthma, bronchitis – you name it I had it.
Then one day I had to go to the emergency room because the pain was just unbearable. I could barely walk, and this gentleman, an older doctor, cam looked at me, looked at my hands and said “it sounds like lupus”.
I was admitted to the hospital and I was treated for lupus.
After I was released, I still went to a few doctors who diagnosed me with other things. The more I researched lupus the more I saw my symptoms were compatible with the disease. I finally met a doctor who didn’t see me as a number but a person.
Once diagnosed, all the pieces of the puzzle fitted together. Right away I was put on a strong dose of steroids and as a side effect I started losing my hair, my teeth started breaking. Weight gain, oh my goodness, I put on at least 150 pounds and I don’t know they say it’s the steroids but it could be the lupus I have whats called a moon face and also the butterfly rash.
Also, lupus causes confusion and memory loss, so that might happen when I tell this story, I’m not a professional at this and you’ll hear me stop in a couple of minutes as my throat gets real dry.
I just recently (not to change the subject) had a procedure done as my throat was closing and I was having severe stomach problems. So they went in and opened up my throat, so it’s kind of hard for me to talk, but this to me is much more important.
So as I was saying, along with the weight gain I experienced such a depression that I realised I needed help. I was scared, I needed to get out of bed and fight this thing.
I could not work and had to apply for social security and disability, but was denied for the first two times. I was told that autoimmune diseases did not qualify me for social security and disability. My savings ran out and I was completely broke.
Now I was married at the time, but when I started getting sick I noticed my husband started to pull away and when I was finally diagnosed I know I was angry a lot at the world but he just didn’t come home or just, you know, went to his own world. My sister, who I call my angel on Earth, her name is Michelle, she dropped everything in her life in North Carolina and without questions or without saying as word she picked up and moved in, and has been with me since. She is walking this path with me. She may not have the disease but she sure knows what it’s like, because she’s been with me every step of the way.
She couldn’t work though, because she was taking care of me she was helping with the kids. We couldn’t pay the rent since I had no income. My husband has just decided to take off. We were almost homeless. One night a dear friend, her name was Nina let us stay the night and she gave us money for a hotel after that.
My mum was with us, God bless her, but she only had a small widows pension. We moved into a hotel and I was so thankful to have a roof over my head even though the living conditions were awful. Every night helicopters flew over as drug deals were happening and a few rooms down fight would break out. I was so worried that it would effect on my boys. We lived there for six months. My immune system was so bad and I was getting sicker and sicker because the rooms were so old and tiny. I don’t think they changed the air conditioning in about 60 years!
But it was as if God had my prayers, I found a lawyer for my case and he told me it would take 12-24 months to receive disability because it was an appeal. He told me most people who apply without a lawyers expertise get turned down because the don’t fill out the correct paperwork.
It had been maybe six months after I got the lawyer when I was lying in the hotel feeling pretty sick and I received an email form my lawyer stating that I’d won my case with disability.
They took my file to the judge and he bypassed everything. I jumped up and down and cried happy tears. I wanted to tell my sister first because she had been with me every step of the way. When I told her it was like angels singing in the room.
I was able to move out of the hotel and into a house and be able to go to a place where there was good schools for my boys and great doctors in the area there for me.
This was now on my horizon and things were starting to look up for me. Most importantly I felt safe and blessed. I felt like life was turning around for my family, but in regards to my health there were other plans. Shortly after I had a liver biopsy and was told I have auto-immune hepatitis.
It was advanced, my doctors said, I might need a liver transplant. But he had good news. There was a new drug called Imuran and this can not only help my liver but my lupus as well.
Later I started getting sharp pains in the back of my head due to what was believed to be just a cyst. I’ve had a cyst on my head there for 7 or 8 years. They did an MRI and said it was a cyst, and I had local doctors actually cut it open and try to squeeze – not to make you sick – but remove it and it’s just a hard cyst.
Then I had a wonderful neurologist who decided to send me in for a biopsy. I got a call and was told that the biopsy came aback abnormal and I had to have it removed immediately.
It turned out to be cancerous – cancer was so rare that 2% of the population got it. Why couldn’t my odds be like that with the lottery?
Well, as time goes on I keep getting more auto-immune diseases. I have approximately eight. I have esonophilic colitis, I’ve just recently been told I have prednisolone induced diabetes type 2 and I have hashmoto thyroidism, the malignant tumour and now they’ve found a mass on my adrenal gland.
On a good note I get to go to a place called the Mayo Clinic in Jacksonville, it’s a very rare hospital, it’s almost like a college campus. They give you an itinerary when you check in – where you are supposed to be, who you’re gonna meet with, and some of the best doctors in town are there. So hopefully, and with the best of hope, I’m gonna be able to go there and get some help.
But what has got me through this is my family and my faith – I pray to God like there’s no tomorrow. I’ve had a difficult life, I lost my father when I was young and he was my best friend, but I always feel like he’s right there with me, holding my hand when things get tough.
And recently I’ve..I can’t afford my medications at this time, I’m having a rough time..which I’m sure everybody, economically , is having a hard time, so I don’t like to go out there and complain too much. My friend from high school, her name is Rhonda she put together a website called lupusfight.com which – after you’ve listened to this whole story you’ll read it on there, because she wanted to send my family and me to Disneyworld so I can have a time with my children where it was about laughter, not tears.
Happiness not sickness and we were treated like queens and kings and my boys had the best time.
During that time I got emails after emails from people I grew up with that I thought I’d never talk to again wanting to donate money to help with my vacation or for Christmas..or just the outpouring of love. It wasn’t even about the money, it about the people, the friends that came out..my friend Christy..there are so many people to name! I was amazed, and now every day they check on me and help my sister because my sister is non stop morning till night – she’s my rock. She’s my hero.
If anyone deserves some kind of Nobel prize it’s her..because she’s with me when I’m crying at night thinking I’m going to die, or when I’m mean which really doesn’t happen I use humour a lot, as that’s what gets me through. I make jokes. I learned that from my father when he was dying, from cancer. He had a slow, painful death but he kept his humour.
I also sometimes feel like a boxer – I keep getting knocked down and I just keep pulling myself back up. Some days it doesn’t feel like I’m going to be able to pull myself back up, but somehow, some way, I get the will..I don’t know where it comes from, I don’t know how, but I get it. It could be ba look in my sons eye, it could be a sticker he comes and sticks on my shirt or something funny that they say. Or it could be a rainbow I see out my window.
Or it could be someone funny on tv like Ellen DeGeneres who makes me laugh every single day – because to me laughter is the greatest medicine. I hope to all of you who are going through anything, that you find your humour, and you find your light that makes you happy, and you will get through what you need to get through, because you will be able to find your way.
If you want to you can go to my website – not to donate money I’m not asking that – but to sign up for my blog or to ask questions, you know I might not have all the answers but I’ll try.
All the best. Thanks.
I just find Amy’s story heartbreaking but also so uplifting in her attitude towards such hard times. An incredible person I’m sure you’ll agree.
I want to thank all my guests today – not just for telling their stories but for opening up and being courageous enough to put this information out there. I’ve found them utterly inspiring and I’m sure you have too. Please feel free to add your comments on the blog – and if you enjoyed the show, please leave a review and rating on itunes – I’d appreciate it massively, and it will help the show reach more people.
Once again, thank you so much for your time – I really hope you have got something from this podcast, it’s blown me away already and I just want to pass that feeling on as best I can.
Take care and I’ll see you next time!
Daves Favourite Bits:
Denise saying: I have lupus but lupus doesn’t have me
Charisma saying: Know that it is possible to keep living and to accomplish your goals.
Amy saying: Find your light that makes you happy, and you will get through what you need to get through.
Lupusfight.com - support Amy, and keep up with her news.
http://www.giveforward.com/fundraiser/5z12/weddingday - Please help out Charisma and her family if you can.
Lupus Facebook Group - this is the biggest one, but there are others such as:
Lupus Uk Facebook Group - this is a closed group though so please only join if you are directly affect by lupus!
Lupus UK - the only registered UK charity supporting people with lupus
Lupus Foundation of America – the only national force dedicated to fighting lupus in the US.
I won’t share or do anything unexpected with your details- I’m nice!