I was born with an inability to eat. My parents baptized me on the third day, it was looking grim. That night I finally started to nurse. My mom breathed a huge sigh of relief. That was just the beginning.
I struggled to eat, I had no interest, my entire childhood. I was underweight. I didn’t like anything but sauerkraut, kale and split pea soup. Food, me gaining weight, became a constant battleground. Scars of that battleground haunt us both to this day.
In my teens my hormones took over, I ate everything! I loved everything. But eating everything didn’t come without unpleasant side effects. I had frequent stomach aches, that I discounted due to overeating. They got worse & worse until I finally went to my doctor for help. X-rays showed a “bubble”. He gave me a tagamet. I was too young & skinny to really be sick.
After the birth of my first child, Soren, I continued to have all day “morning sickness”. This has continued to this day. I learned not to eat mornings. I learned to be slow mornings. I learned not to trigger the extreme nausea. I thought it was just me.
I’ll skip the rest and get to now. Now I’ve been sick-sick a year. At the end of 2021 I couldn’t eat or drink. If I forced myself, it came shooting back out. The pain was insane. My chest felt like an elephant sitting on it, such intense pressure. My stomach felt like it was being torn in two from the inside out. At the ER(s) my heart was fine. Outstanding even. I was constantly dehyrated, and constantly berated and told to “just drink”. There were no answers. No help. I felt as if I was being abandoned to die.
My husband, my hero, stepped in and saved me. I believe he literally saved my life. He found medics to give me IVs. Lots of IVs. Lots of liquid. Precious liquid that stopped me from dying, spinning, fainting, laying on the couch losing my ability to do anything. By January 2022 I was alive, albeit 40 pounds lighter.
In January 2022 Tess found a possible answer. On TikTok. I hate TikTok. But she made me watch… and… well… it did sound just like me. I mean, exactly like me. I know enough from being a psychology major that we tend to see ourselves & our ailments in others, but this was e-x-a-c-t. This was me to a T. This was MALS.
MALS is Median Arcuate Ligament Syndrome. It’s the ligament that holds the aorta, nerves, etc. in place down the middle of your body & through your diaphgram. My ligament has slid out of place, compressing my celiac artery and solar plexus ganglion. The reduced blood flow to my digestive system, and the compression of nerves, causes my pain, pain with eating, problems with digestion and all the other million+1 symptoms.
I was officially diagnosed on March 24, 2022. I took another 5+ months to see a surgeon. A surgeon who said, and I quote:
You are too old and too fat.
By then I’d lost 60 pounds in less than a year. I was a month away from my 55th birthday. I was helpless and hopeless.
In my despair, I posted on Facebook. Facebook that I normally save for the good things. The things I want to remember. The happy things that come up in my memories. This time though, I posted my anger at that surgeon, my condition, my utter helplessness and loneliness.
Of course I got lots of responses and prayers, but I also got help. Alana’s (my bonus kid) mom is a doctor. Not *my* kind of doctor, but a doctor that knows other doctors. Because of her I reached out to Walter Reed Vascular. I finally had a true telehealth appointment with them two weeks ago. While they have no experience with MALS, that doctor did know a guy.
That guy called yesterday. God willing my surgery will be this December. I cannot adequately express my incredible JOY! It won’t be my only surgery, I have some additional abnormal physiology, but it will be the one that gives me a shot at life 2.0.
I am ready. I will be taking the next couple of months off. I need to get healthy. I need to put my heart & soul into getting my body (and sanity) back. Angel, my partner, my friend, my angel, will helm the Studio while I’m gone. But I will be back. Better. Stronger. Faster.
Thankful that you have a date for your surgery … we will miss you, but you need to rest & prepare for your surgeries & then take the time to properly recuperate! {{hugs!!}} & prayers…
Toiny, I just added you to my prayer list once again. May God hold you in the palm of His strong hand as you get ready for surgery & be with those who will be caring for you and with your family as they continue to give you support.
Ann
hope that your health problems will be nothing more than bad memories after your operation.
I wish you a lot of courage to face all this.
So glad that you finally have a date for your surgery. Not only we will miss you, but I’m sure you will miss us and the Studio as much. Take care of yourself and prepare for the surgeries. Get well soon!!
Hugs,
Toiny, I am so pleased that you have received some answers, found a doctor who listened to you and that you have a date for surgery. Please look after yourself and take the time to heal. Sending you hugs, Keryn
I am so happy that you are finally getting some resolution for your problems. It’s been a long time coming and one that you are most deserving of. Prayers and positive vibes coming your way. Hugs.
Dawn
Oh my goodness all that you have gone thru in your life and no Dr. could give you and answer or help you. Strange how we come by answers but thankfully your Daughter say that thing on TikTok which led to you finally finding out what could be wrong with you and finding a Dr. who can help you thru surgery. You have my prayers and best wishes for your surgery and that it will help you. You are so kind and you deserve nothing but the very best. We will all be with you in spirit. Hugs, Love and the very best to you
Linda
Wow, how frustrating to wait so long for answers and in order to finally be treated with respect and serious consideration for your health issues. It reminds me of that show Mystery Diagnosis. The doctor they show the lab coat with their name on it towards the end of each episode is always the one who finally solves the problem, but it usually goes on years and years just like in your case. Be sure to really rest and take good care of yourself during your break. It’s so much easier said than done, isn’t it? Will keep you in my prayers!
I have no words – I can’t imagine dealing with that kind of pain, discomfort, frustration and still having any semblance of a normal life, and yet that is just what you have done. Your strength amazes me! You will be in my prayers as you move towards hope, help, and healing.
So sorry to hear about your long struggle, but very glad that you now have some answers and a plan in place. Prayers for a successful surgery and a speedy recovery!
I am so glad you found out what was wrong with you and a doctor to fix it. I wish you a speedy recovery, also sending you a big virtual bear hug.
Oh my, so sorry you have been going through this for so many years! I’m happy you kept searching for answers and that your daughter stepped in and got you on the right track. Best wishes for your surgery and speedy recovery. Take care of yourself first, we will all be here waiting when you feel up to coming back. Prayers going your way…
Wow! 55 years of that! You survived, that is a miracle in itself. Hope everything works out with the surgeries and you can live a full life without all that crap to deal with. Of course you will be missed. I do hope you will stop in often when you have the time. Keep us up to date on your progress too, if possible. Over here we will keep you in our thought and prayers for a speedy recovery and the joy that will come with it. Take Care.
OMG…. What a journey you have had… lifelong and this long to be diagnosed… Sounds like it is extremely rare… I have intestinal issues, but I know where they came from, but can sympathize a tiny bit… I do truly believe that each person we meet, may hold the key to something in our lives… so glad those little keys started opening doors to the answer for you… and good to have such a large supportive family and of course a huge network of well-wishers who care. Please keep us updated…. prayers and wishes for things to go well are of course sent your way. Liz (easyeyes4you)
Praying for your speedy and complete recovery! It must be such a relief to finally know what causes all your problems! Thank God for your beautiful family and caring friends who have helped you on this journey to recovery! As for me – I hadn’t realized how much I enjoyed you sharing your life and photos until you apparently disappeared. Hugs and prayers!
Wow, we all have our burdens in life , my heart goes out to you. my grandson (10yo next month) is G-Tube fed because he can’t swallow without choking. Different reasoning but well understood. We’ve nearly lost him too due to this, Blessings and wishes for a complete recovery/resurrection! 😉 You’ve got this!
Just reading this! I remember your talking about the morning sickness since your firstborn. So glad o hear you are finally getting some answers! I hope the upcoming surgery gives your body the relief it needs. Wishing you a smooth surgery and a quick recovery! ♥♥♥
It’s such a shame in this day and age with all the technology we have that we have to be our own advocates to get someone to take a hard look and help when we need it. I am so sorry to hear what you have been going through and hope and pray that now the light is at the end of the tunnel and you will be well and whole when you return to us. You will be missed and know that you are well loved and cared for. Keeping you in my thoughts and prayers as you continue this journey.
Hugs,
Judy aka Pixel Palette
I just read your message. My goodness, how strong you are to have put up with this disease for all these years. I am glad you finally found the source of your problem and a doctor who will do the surgery. We will miss you but it’s time to think about you. Hugs!
as someone else said, i have no words! i can’t believe your struggle has lasted this long without any concrete remedy. you will be in my prayers that this is just the beginning of a successful resolution or, at the minimum, recovery of your quality of life. you bring such happiness to many (not just your friends and family) and your light needs to keep shining brightly and enhance so many other lives!
I am so glad that you shared and that you found someone who knew what was going on with you. I cannot imagine what you went through and continue to go through. Prayers for a successful surgery and to guide the surgeon’s hands!
Oh Toiny…what a relief that you have a diagnosis & a plan. You will be in my prayers. Stay strong, have faith & trust that Go has you in the palm of his hands. Let your light continue to shine for all you have touched and enriched with the gifts you share with us constantly! Rest, recuperate and have a blessed Christmas!
My heartfelt wishes for a respite from your problems and health in your future. So sorry you’ve been going through this ordeal for so long, but happy to hear you’ve now got a solution coming.
Hello Toiny or anyone who can shed some light on how Toiny is doing, has the surgery been done, hope everything is going ok.
I just read this – Jan 2023. I have been concerned and realized last night in bed that this was the place to look. I had already been praying for you feeling pretty sure that something was wrong. Prayers continue. You are certainly missed but we want you back healthy, happy and strong!!!!!!
Praying that you are well on the road to getting your body, heart and soul back. Can’t wait to see you back here.
Checking in @Toiny… let us know how you are doing, we are all praying for you! Blessings, hugs & love to you & your family
Haven’t heard anything from you, I hope all is well. Anyway just wanted to let you know I was thinking about you. hugs to you..
[…] surgery that I hoped I’d have in December (MALS, Surgery & Leave of Absence)? It’s happening May 3rd! Not only is it happening, it’s happening all at once. […]