This week we hear from Lauren from St Louis, Missouri, USA. My first international guest post, Lauren has shared her journey with a chronic illness that began in her teens. I really hope you enjoy reading it (I certainly did!)
While sitting here in my front room, I noticed myself looking down at my newest of surgeries; a partial knee replacement at the ripe age of 32. So if we are going to list all of my surgeries from the age of 17 until last week, we should be right at about 31. Dealing with chronic illness and pain wasn’t a big deal in my life until all the sudden it was. It somehow makes sense in my life that I woke up at 17 and my life was very literally never the same again.
High school health wise was very draining for me. I was always tired, had massive headaches and had to bring at least one extra change of clothes to school because I was for sure bleeding through a pair of pants every day. I can remember asking my friends if they were bleeding as much as me, to try and figure out if I needed to be concerned or not. Once I went to my new GYN doctor, he decided to do extra blood work because I had indicated in my paperwork I had been bleeding excessively. That day changed my life forever. First, I found out I have a blood disorder called Von Willebrand’s Disease. The best way for a new person to think of Von WillieBrands Disease is to think of it like haemophilia. My blood just has a hard time clotting, and very literally makes less clotting factor. So in cases of surgery I need medication to help my blood clot. It’s genetic and could have killed me because of all my blood loss, it also was the reason for all my symptoms up to date like the headaches, anaemia and fainting. The second thing my new doctor said that day was that I had Endometriosis, and it was bad.
From age 18 to 23 I had around thirteen surgeries to try and get rid of all the endometriosis. Surgery after surgery, hormones, oral chemo medications and then in January 2009 a total hysterectomy; I was only 23 years old. I had been told since I was 21 since I had so many surgeries and there were so much scar tissue and the endometriosis and was now what my doctors categorised as stage 4, meaning it was all over my major organs and moving upwards towards my heart. I wanted to have kids but knew I was going to be unable to physically do so, at the time full hysterectomy seemed to be the only option (bearing in mind I had also been non-stop bleeding for a year). I found a top doctor in St. Louis who carried out the surgery because I thought this would be the cure…I couldn’t have been more wrong.
In 2011, after having some other health issues creep up in my life such as 2 knee surgeries, and half a dozen kidney stone procedures. I started to have that old friend, back pain and stomach pain come back into my life and not go away. I went back to my group of doctors that had treated me in the past for my endo, and at first said there was no way it could have come back because I had no “ working parts” to produce the amount of oestrogen needed to cause the amount of pain I was in. I was persistent and after a few months, talked the doctors into doing an exploratory surgery, and if I was wrong I would leave it alone. They did the surgery with 2 different surgeons, and I WAS RIGHT. The endometriosis had come back, but the place at where it is located the surgeons simply can’t and wouldn’t even chance taking it out.
I think the hardest thing about having chronic pain are numerous are far reaching. First, when you have chronic pain you don’t just get to be sick. You have to be sick all day every day, not look sick and then still deal with all of the life’s problems and family problems. You never get a break to just be sick. Since the shit has really hit the fan, and I have been in and out of the hospital having all my surgeries. I have had 2 family member’s kill themselves, my older brother has been a Marine and deployed multiple times to Iraq, and that is not even going into too much detail. Life has not been easy.
Second, as chronic pain sufferers we are always looked at as “Drug seekers”, and I am working hard in St. Louis to change that dialogue. We are patients, not addicts. Third, we have to deal with all the mental health stuff that comes along with being sick and being judged for being sick on a daily basis. This is really the first time in my life that I am dealing with depression and anxiety on this level and it’s harder than anything I could have imagined. Although I am disabled (as of 2015) and thought doctors and family would be more understanding, I still have to constantly bring advocates with me to doctor’s appointments or paperwork proving my disability. We all together are in a hell that no one can understand, and I find that other chronic pain sufferers are some of the strongest people I have ever met in my life.
If it weren’t for my mother (pictured), I am not sure where I would be right now. She is my strength on every level. She is an advocate for me when I need to bring her to doctor’s appointments to prove I need to be treated like a human being, she’s there. I can speak up for myself and she has raised me to be a strong woman, but it always helps to have another voice in the room to make it crystal clear, you are a patient, not an addict! She always approaching things with a level head, and when I sometimes find myself getting into a narrative where I think life is unfair, she snaps me back into the young women she raised. A strong, smart women, who doesn’t take NO for an answer. I think she is one of the main reasons why I have come for far in my life in general. The second part I want to leave readers with is that they should never, never take no for an answer. You have to be your own advocate, no one else will. I know it’s hard to feel like a nag all the time, but this is your health it’s worth fighting for. I realise some people don’t feel comfortable going head to head with doctors, so bring someone with you. Find someone to go to new doctor’s appointments with you, so that you understand what is going on and your best interest is truly at the forefront. YOU matter. STAY STRONG!
What a journey! Thanks to Lauren for opening up so much and sharing her story. You can follow Lauren on Twitter.
Until next week!