Hiya lovelies, well what a week it’s been. I’ve spent so long advocating for other people that I forgot to advocate for myself.
A friend gave me the kick up the butt I needed to ‘forcefully request’ a CT. I’ve done so before but have been dismissed time and again.
I’ve been dealing with this for eight months and I was so tired of being told ‘it’s natural for your age, take two Nurofen, and rest’.
Why do women have to fight so hard to be heard?
Finally I have answers. Several of you have messaged me asking that I share what’s been happening in the event it can help them post Covid. So here we go.
For me a previous Covid infection left me with joint inflammation that softened ligaments and connective tissue. Because it was untreated it allowed injuries to occur.
What follows really bugs the cr*p out of me because it’s what I guessed and what I’ve been (almost) begging them to check for me for months.
The post-Covid inflammation aggravated a pelvic bone injury from when my youngest daughter was born and it has completely destablised my lower body.
Because of it I have a two torn tendons in my knees, a tear in my hamstring, bursitis in both knees, a bulging disc or two in my spine (which I could feel), and a trapped spinal nerve. This has caused my right leg to be twisted inwards and be a teeny bit shorter than the left leg (which I knew!)
But wait there’s more.
Of course all of this aggravated my auto-immune condition (which was stable) and which causes, among other things, joint pain.
Double whammy!!
I’m grateful I now know what’s wrong but I’m also very, very angry that despite repetitive requests for further investigations I’ve been dismissed and treated like I was a hysterical woman.
I still don’t have any pain relief but you can’t have everything can you?
The good news is that my arms just need rest. As for everything else, it will take time, loads of physio, and help…. but guys I know what I need to do and that is to rebuild my lower body strength and possibly sack my GP haha.
It’s been one heck of a ride these past few years hasn’t it.
If I never have to hear the word ‘mindfulness’ again I will be happy!
I’m so very grateful for my family’s unending support, for the friends I’ve made through this blog, and to everyone who has taken the time to message and encourage me.
There were some very dark moments, mostly in the wee hours, when I didn’t think I could take the pain in my legs any longer.
In future I will advocate for myself as strongly and as passionately as I do for everyone else. I will be a ‘mama bear’ and protect my own wellbeing. toni xx
I was just wondering how you were going, I’m sorry you have had such a rough ride. Hopefully now you can get the help that you should have received earlier. All ways trust your gut instinct. Stay strong 😊
Oh no. I’m so sorry, Toni. We know our own bodies and we know when something is off. I wish doctors paid more attention to that. So I have two thoughts for you. One, the way you’re describing your pain sounds a bit like small fiber neuropathy, which is one of the many diagnoses I had to fight for. Waited about 5 years for that one. The neuropathy is thx to Ehlers Danlos, which I was just diagnosed with at age 52, after weird pains and symptoms my entire life, most notably during pregnancy and childbirth.
My oldest decided to flip during labor and was split breech, and in their rush to get me back for an emergency C-section, they forgot to give me pain meds. So, yup, came to as I was being wheeled out of the surgery suite, screaming bloody murder. I thankfully don’t remember much. Baby girl was/is ok, thank God. My youngest baby also put me thru hell, bc at 20 weeks, she decided she’d had enough and wanted OUT. Went on full bed rest for the next 17 wks and ended up in the ER 9 times total bc I kept going into labor. But, healthy baby born at 37 weeks!
There’s lots more to the story, but up until 2018, I believed the docs when I was told nothing was wrong and I was perfectly healthy. Turns out, I have LOTS of things wrong with me, 4 of which are considered to be rare diseases. So, LONG story short, listen to your gut. And if it takes going to 40 docs to get help, do it. You deserve to live as pain-free as possible. Look into small fiber neuropathy and Ehlers Danlos, and see if anything clicks. Gentle hugs. Hang in there!
Hi Peggy, I’m so sorry I’ve been meaning to reply to you for ages. I’ll be in touch privately soon. toni xx
Toni, I am so sorry you have had to go through all this! I only hope that now you can start your way to healing and better health. You are such a wonderful lady and you deserve all the best. Take care and please keep us in the loop.
This makes me sad. I was medically defined as a ‘hysterical young woman’ in 1979 before I was finally diagnosed with cancer. Only took 3 years to convince them I was sick. I had hoped that by now, things had changed. Hang in there!
Now that they know exactly what is going on, I pray they will treat accordingly and more rigorously than they did in the past. Best wishes and prayers go your way.
Oh Toni – what an unnecessary waste of time, pain for you, downtime when wouid rather be working – I recently had a friend – her condition ignored by 4 medical people including specialists and ended up in emergency – she is OK now . .but . . .again – such a waste.
Your story above about when your daughter was born is so scary . . I’m glad it worked out,,.,..but I am sure you would prefer not to be famous for that reason.
Hang in there – hopefully the answers are there and with time, you will be back to your “normal”.
Keeping you in my prayers ❣️Try to stay positive and remember god only gives us what we can handle sometimes we forget to talk to god when we feel discouraged but with his guidance and grace we can get through many things. Please know many quilters are send out prayers for you and yours!🙏🙏🙏🙏🙏🙏🙏
Glad you are getting answers and are on the road to healing. Stay strong – we women are good at that!
I am so glad that you finally had someone listen to you. A lot is going on but it sounds like you’re on the right path. It will take lots of perseverance and patience. God is at work in you. All things are possible with Him. 🙏🏻🙏🏻❤️
I’m so glad you advocated for yourself. That is 75% of the battle. Now you know what you need to do!
So sorry you are going through all of this. If and when you can, the friend that “encouraged” you to make a fuss deserves a big hug.
I like to say that I have educated my doctor on hypermobility syndrome and all it entails. She was just out of school when I started seeing her, and completely out of her depth, so tended to ignore my issues. 30+ years later and she works with me, and, I believe, has greater understanding for all her patients.
She and I have both been dismissed by specialists, as recently as November.
I am sending you healing thoughts and a virtual hug.
So sorry for all you have gone through but so glad you finally have answers and the beginning of a plan. I remember when I first found your blog, many years ago, my mom was in the hospital and you sent such an encouraging
note – hope I can do the same for you! Sending prayers and good thoughts !!! Take care of you ! Debbi ❤❤❤
Oh my goodness, what a terrible time you’ve had. Sending you love from Bury St Edmunds UK
Wow! You sure got hit with a bunch of whammies! How sad that they don’t listen to us! Praying the best for you in the near and far future!
Toni, I’m so sorry you’ve had to go through this! Why do people not understand that women are people too???!!!! I’m very lucky that my Primary Physician (a man) believes me when I tell him things!! Hopefully this will now start to turn around and you can get your life back. I’ve read so many stories like yours – doctors quite often seem to think women are just complainers…. Take back your life and live it to the fullest!!! You deserve it!
Thanks for all the wonderful creativity you share with us – especially while going through all of this. Bless you!!!
I’d love to work it out Vivian. The tech who did my blood test had the same thing. Like me she suddenly couldn’t walk one day. She had a severe injury that was showing through her skin (!!!) and she was still dismissed. I mean my God I have better things to do than hang around my Doctor’s office seeking attention! I’ve been telling them my leg was twisted and shortened for months, I keep taking my trousers off to show them ROFLOL and they didn’t believe me. Heck I know when my leg is twisted inwards and not touching the ground as much as the other. The physio took one look and went holy cr*p!
What really bugs me is that when my youngest daughter was born my then GP ignored me when I said there was something wrong. I went back six times before she threw a scan referral at me and told me to leave her office. I needed emergency surgery, nearly lost a kidney, and I nearly died. She was reprimanded by the AMA and my case is part of the Uni curriculum. I’m famous! ROFLOL. They know I don’t go to the Doctors until I have a very good reason and that I know my own body! Grrrr!
So glad you’re able to move forward (somewhat). Prayers for your continued improvement even though it will be a long process. Blessings.