Tag Archives: #people

Not always a Happy Ending

Welcome back fellow readers, bloggers to the world of The Reality of Unseen Illnesses,

Sorry I haven’t written for a few months I have been confined to white tiled rooms we call hospitals, going through the same cycle and struggle of fighting with Medical Health Professionals.

Let’s back it up a bit my last story was the long journey I had taken to discover I had an Illness called Abdominal Cutaneous Nerve Entrapment Disorder (Here is a quick re cap on what that disease is :  (ACNES) is a condition that causes chronic pain of the abdominal wall. It occurs when terminal branches of the lower thoracicintercostal nerves (7-12) are ‘entrapped’ in abdominal muscles, causing a severe localized neuropathic pain that is usually experienced at ventral portions of the abdomen. It is frequently overlooked and unrecognized, although the incidence is estimated to be 1:2000 patients.[1] )

It was an amazing woman, a woman who looked beyond the norm and discovered that this was the main source of my chronic pain, a wonderful woman named Dr Heide Feberwee
Gold Coast Persistent Pain Management Service
Suite 3, Campus Alpha
2 Investigator Drive
ROBINA QLD 4226
Phone: (07) 5668 6825
Fax: (07) 5680 9539

and after having the  (RFA) ablation surgery I was pain free for quite awhile. However because I am only a young 22 year old my nerves grow back quite frequently and I usually have this operation done every 3-6 months.

So lets fast forward a few months to June 2016, I woke up the same as every morning and went through my usual routine and whist normal 22 year old’s morning’s usually consist of breakfast and coffee, this is what my morning consists of 100g of Thyroxine for my under active thyroid (Hypothyroidism) , 1 tablet of inner health plus (because of all the antibiotics I have to take), Movical and Iberogast (to help soften the bowel and help the digestive system whilst on many Opiate related medications. Which is not good. BTW. PLEASE ONLY TAKE MEDICATION AS PRESCRIBED BY GP OR HEALTH PROFESSIONALS.)

So in June 2016 , I woke up and realised I had a very bad pain on my right side and at first it felt like that odd sensation before you need to urinate, when this appeared the pain became so unbearable that I remained in a crouched over position clutching my right pelvic side. So I went through the painful steps of organising a GP appointment, the GP sending me off to get a Pelvic Ultra Sound both Internal and External, and for a girl a first time Internal Pelvic Ultra sound is a bit uncomfortable. Transvaginal ultrasound is an examination of the female pelvis and urogenital tract (kidneys and bladder). It helps to see if there is any abnormality in your uterus (womb), cervix (the neck of the womb), endometrium (lining of the womb), fallopian tubes, ovaries, bladder and the pelvic cavity. It differs from an abdominal ultrasound as it looks at the pelvic organs from inside the vagina.

I had that done, got the results and was sent away with the normal anti inflammatory pain killers, but this didn’t do anything so hoped into mums car and drove to my second home ‘Robina Public Hospital.’  went through the usual cycle of explaining the same thing over and over again being pumped with pain killers, getting told there is nothing really wrong, organise another  round of ultrasounds and because of the pain killers the hospital pumps me with I end up having to have a catheter (“uretic catheter”:) draining urine from the urinary bladder as in urinary catheterization, e.g., the intermittent catheters or Foley catheter or even when the urethra is damaged as in suprapubic catheterisation. 

After a major 48 hours I finally ended up with a questionable diagnosis of Pelvic Inflamatory disease: (inflammation of the female genital tract, accompanied by fever and lower abdominal pain.) I was put on two types of antibiotics Flagyl

(Flagyl (metronidazole) is an antibiotic. It fights bacteria in your body.

Flagyl is used to treat bacterial infections of the vagina, stomach, skin, joints, and respiratory tract. This medication will not treat a vaginal yeast infection.)

and …

Doxycycline is an antibiotic that is used in the treatment of a number of types of infections caused by bacteria and protozoa. 

and whilst these medications for the two weeks in combination with strong pain killers did help this pain for a period of time. However because the side effects were so bad I almost considered just living through the unbearable pain. Some of these side effects from both antibiotics included:

  • Diarrhea
  • Nausea
  • Migraines
  •  Bleeding
  • Loss of appetite
  • and the constant feeling of not feeling 100%

 

So i guess where I am going with this story is that not everyone is happy ending, and I still have to fight to prove my illnesses are real only to end up with a MAYBE or Questionable diagnosis. The only good thing to come out of my stories is that I end up making wonderful friends at the hospital going through similar things to me so they are very understanding, so when you are feeling stressed, sick and alone please remember that you are not alone and that there are people out there just like you!

Lauren x

If you have a story about your invisible illness that you would like to share with me and the world please email : thatsteelmedia@gmail.com

 

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A story not from me, but by another.

Today for the first day my blog has achieved and started to do what I hoped it would do, give courage and freedom to people like me, who have also been treated and thrown in the “too hard” or “it’s in your head” baskets to not feel afraid, and are not alone  in telling their stories. The more we do this, the more we are united I believe that we can make a bigger difference in the world on educating health professionals and the general public about unseen/ invisible illnesses.

This wonderful person reached out to me and had the courage to share with me their story, however in terms of this blog and their privacy, they have chosen to remain anonymous and out of respect I shall do that. I am just glad that they were able to share their story none the less.

This is their story:

“I just wanted to let you know I both cried and cheered reading your story! I feel so so sorry for what you had to go through. Makes me angry. My story is very long over a decade, and  now I’m telling you because I’m amazed that someone else has been made to feel how I did and still do as my pain journey has not finished unfortunately. I had a simple labrum tear in my hip.”

A hip labral tear involves the ring of cartilage, called the labrum, that follows the outside rim of the socket of your hip joint. The labrum acts like a rubber seal or gasket to help hold the ball at the top of your thighbone securely within your hip socket.

hip_labral_tear_intro01

 

” I was mis- diagnosed for 18 months with everything from post natal depression to depression and attention seeking thrown at me. I’ve since had hip replacement after years and years of battling again for help then back surgery because of a chiropractor that bulged 2 of my disks,  another surgery for that, and after waiting nearly a year for a DR to listen.

I was  called anorexic by people because I couldn’t eat from medication side effects and the constant amount of pain.. And now post 1 week after having my nerve block done my muscle cramping and headaches have not subsided due to poor posture and loss of muscle from not recovering from hip and back was damaged 12 weeks after that huge surgery.

Osteo has worked on me just this Thursday and was amazed at how lop sided my body is due to muscle miss alignment. I have a weekend right arm as I type with nerve pain running from shoulder to wrist . My recovery is going to take forever because I was not taken seriously in forever 😞 I’m 43 and I live in the body of a 90 yr old drives me crazy!”

Anyway that was long winded , thank you for sharing your journey it makes me feel less mental and a lot stronger about telling the medical profession . That I know my bloody body and to help me. Best wishes for you I hope your pain has gone for good you deserve a break xx ”

And I too thank this amazing person for having the strength and courage to open up to me and now the rest of you and share their incredible story which they are still writing, but please everyone remember you are not alone! There are others out there like you! We no longer need to hide, or feel embarrassed. Time to fight, stand up and believe in ourselves, we know our pain, our bodies, our stories and no matter what anyone tells you, you know best! Together if we are united we can help raise awareness about the Reality of Unseen/ Invisible Illnesses.

Thanks,

Lauren x

P.S. If you have a story you would like to share please send it to: thatsteelmedia@gmail.com