I'm here because I have a few rare diseases 1st was a congenital heart defect #ScimitarSyndrome which lead to 3 #OpenHeartSurgery and 1 #stent after I was diagnosed with #PulmonaryHypertension and now testing is in the works for #Scleroderma non skin so here I am figuring it all out !!! Hello 👋🏾
#Fibromyalgia #Lupus #Infertility #COVID19 #Depression #PulmonaryHypertension
I have not written for a while, the simple reason I had to take a break after writing my book. I landed a bestseller allowing people to step into my journey with fibromyalgia, depression and infertility. The struggle to find out who I am now that I cannot work, and the meaning of life continues to be a daily journey. In 2016 I stopped working and was in severe depression and in excruciating pain. In 2019 I was diagnosed with lupus. By that time, I was so tired of the fight I shrugged my shoulders and cried and went on with life.
2020 I was in the first group of COVID sufferers. I almost lost my life and the subsequent chest infections and sepsis with 4 admissions in the last 2 years have taken a lot out of me. My lungs were scarred and I have borderline pulmonary hypertension. Accepting living with a limiting diagnosis and reduced mobility has made me quiet. Quiet because I got tired of explaining to anyone what they could not see. I did write the book, did I not!
Many of us struggle in finding who we are again as the pain rips through our bodies. It is a daily decision. Our responsibilities as husbands, wives, siblings and colleagues weigh heavily against the pain. We diet, we walk, we look for solutions and you find no size fits all. Who you are is your character, it is not your job title and through therapy, we revisited my values.
As a fibromyalgia and sufferer who suppressed a lot of pain, I learnt to have boundaries and put myself first. I learnt to be self-full (coined by Iyanla Vanzant). It has been a surprise to many. I am lonely, something I had not counted on. My friends have moved on with their lives and even when you get an invite you have to choose between the pain the next day and disappointing people.
The next big decision I made was not to have children. With the pain, depression and inability to have a child, I chose to not adopt or go for surrogacy. The tradition, of course, was busy challenging me “you know you have to have a child to work for”. My question was, if my pain is 15 on the richter scale and I take opiates, how do you deal with a 2 year old? The grieving of motherhood was difficult and continues to be a companion who turns up at inopportune times triggering a flare.
I reinvented myself to be a best selling author and I am writing my second book on grief. I have had to fight against the norm of how people did things. Social media did not help the insecurity of not being good enough. I found a lot of people do not understand invisible illnesses and the safeguards we have to ensure to live. It took me 5 years to write my book and I wrote it so that someone who looked like me, a cross-cultural British Kenyan woman would have a reference point. Perhaps I continue to hope that professionals will read the book and understand how we present with pain. The language we use when explaining pain needs to be understood. I have been able to help people in Eastern Africa and America who have struggled with understanding the multi-system diagnosis. Yet I still don't feel I am good enough.
I have found my passion for creating awareness on mental health and infertility which are a taboo subject in the African community has been worth it. I evolved and became more compassionate and learnt to listen. I now use a walker to help me walk and sometimes I cry because I am an old woman with a young spirit. Then I am reminded who I am and how I stand with the weakest is most important. I think one of the greatest challenges is not being financially independent and is soul destroying, but that is a story for another day.
Hang in there, the sky may be grey the sunshine will turn up when you least expect it.
Knitter's Corner
July 19, 2022
Do you find that as you have more pain the type of knitting you can do changes to become simpler? Does the heat affect you? And what you knit?
#Fibromyalgia #Osteoarthritis #ChronicPain #Hypoxia #Scoliosis #hernia #BackPain #stenosis #PulmonaryHypertension
I am under investigation now for sleep related hypoventilation which was discovered when I had supine oxygen desaturation during a scan for pulmonary hypertension.
They have decided that I don't have a lung disease - probably - I do have UARS however - and that I need more investigations. Unlikely to need a CPAP but a different oxygen mask may be needed.
Has anyone had these tests done? And what outcomes from them?
#excessive whole body sweating and #Exercise Induced Pulmonary Hypertension.
These are relatively new symptoms to me and are having a very negative effect on my life. Is anyone out here dealing with treating either of these conditions? I also deal with 7 other auto immune diseases. I am seeing doctors at Mayo Clinic with no real answers for these two conditions. Thanks for whatever you can offer.
Barb
I live with CREST Syndrome, Iritis, Pulmonary Hypertension and now A Fib which is a racing heartbeat problem. I got Covid a year ago and spent 6 days in the hospital and because of the Covid I have the A Fib problem. We thought we had gotten my heart beat back to it’s normal rhythm but a couple days ago my feet and legs started swelling really bad. My whole body is swollen and I can barely walk. I started taking water pills and the swelling has gone down but I am still having problems walking and I feel terrible. Went to my doctor who sent me to the ER because the A Fib is back and if I am understanding the condition right resulted in the swelling of my body. I also gained about 10 pounds which is the result of the swelling that is going on. I am so tired of not feeling good. I have lived with the above auto immune disorders for 22 years and have been able to live a pretty good daily life but here lately I have been getting worse. Getting Covid did not help because of the lingering effects of the virus. BUT I will keep on fighting these ugly diseases, I just have to remember to be positive and that GOD is there for me‼️
Just wanted to introduce myself. I'm Deb, I'm 52, a wife, and have two adult children. I've been battling illnesses for a decade now, so many physical problems that I'm now disabled and stuck in the house for most of the time. I'm also learning how to give up doing the normal things I used to do, although most of the time, it's not pretty. I am mortified and embarrassed to list my issues... but, I feel I need to as I did come here to learn and be a part of a group that understands. So.. here goes.. my list of issues are fibromyalgia (10 years officially diagnosed, 17 years with it), heart disease (including an emergency triple bypass when I was 44), pending pulmonary hypertension diag, asthma, copd, liver disease, kidney disease, stage 3a, hypothyroidism, feet neuropathy, low grade chronic depression, anxiety, and I'm sure I'm missing one or two more. The fibromyalgia really kicks my ass though.
Right now, I'm in the middle of fighting myself to get up in the morning, and finding something to do besides not getting up and sleeping as much as possible. I know, from reading and my doctors, that activity is supposed to help with this, but to date, I think they have no clue. I am extremely thankful for the medication Trintellix, as it's made it so I don't need 3 entire hours to be able to get up off the bed in the mornings. (Speaking of meds, I'm on a ton) My main doc doesn't believe in giving me hardly anything for pain meds, which, sure would help me start walking on a treadmill.
Sorry, I meant to type up a quick "hello" and introduce myself, and I've started a tiny book.
Anywhooo, I'm glad to be here!
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