Being a Spoonie my life is pretty full of medical appointments and procedures. Last year I was diagnosed with MALS (Median Arcuate Ligament Syndrome or Celiac Ligament Syndrome). The recommended treatment for this is a rather invasive abdominal surgery (6inch incision from my rib cage to my belly button). I do have a rather complicated medical history and my cardiologist is loathe to recommend surgery. As a final test I was sent for a Celiac Plexus Block, to see if my pain abated at all.
It is a relatively simple outpatient procedure, performed in a surgical center under general anesthesia (Zebras don’t react well to numbing agents). During my procedure I also had Sacroilliac injections as my SI joints are loose and deteriorated. The goal there was similar, pain relief. My block was performed on February 14th, Valentines Day.
If the block worked I should have been able to eat pain free for at least a day, maybe even a few weeks. The block did not work in my case, I had the same gastric pain as I’ve always had. Further confirmation that surgery is not a good choice for me. Good news and bad news I suppose. Unfortunately the SI injections caused a nerve reaction in my hips and I have had an increase in pain since the procedure. I have been working with my PT in an attempt to resolve the damage and regain mobility. Lesson learned. In the meantime I have been spending a good deal more time in the wheelchair.
Sometimes I like to try to forget that I am sick. I push myself too hard and try to do too many things. When that happens life has a way of catching up with me. Tuesday I had an appointment with my cardiologist. It was supposed to be a quick follow up to discuss surgery for MALS. It turned into a discussion of my POTS symptoms and a secondary trip across town for IV hydration. I have another follow up in a week.
Well, life has a way of catching up to you. It really ruined my plans for the day.
But lucky for me I have quite the welcome home committee.
I really hate doing this. I don’t like asking for help. I have a condition called Median Accurate Ligament Syndrome or Celiac Ligament Syndrome. I am meeting with a vascular surgeon to plan a major abdominal surgery for December. The plan is for Yarrow to go to board and train during the time I am in recovery. This all costs money, and unfortunately that is something that is just very tight these days. I have started a bonfire campaign. If you could take a look, perhaps share it, I would appreciate it.
In Denton there is a big Day of the Dead event. There are push cart (soap box derby) races, a pumpkin patch, vendors, food trucks, ghost stories, and a paper lantern parade. This year our Junior Derby team participated in the “coffin race” and parade. I decided to take Yarrow with me for training and socializing.
It was a long day. We arrived at the festival at 11AM and the parade didn’t start until 7PM. Luckily there was a pop up tent and chairs for those of us who can’t do so much walking around. Yarrow was on her best behavior. She did wonderfully walking through the crowds, wasn’t phased by all of the other dogs or crazy costumes and masks. The starter pistol for the race didn’t bother her at all. She enjoyed meeting all of the little kids who wanted to pet her.
After the festival we all went out to dinner together at Chuys. We ate on the patio, Yarrow has never been to a restaurant before. She rocked it. We had to wait an hour to be seated and she spent the entire time sleeping under the bench. During dinner (which took quite a while as we were a large party) she tucked nicely under my chair, even when her tail was stepped on, oops. She did bark once, when one of the waiters stepped on her and startled her awake but she settled right back in and we had no more issues. I am so proud of this girl.
I am so exhausted and paying for this but it was worth it. We had a great time.
I am chronically ill. That means I have an illness that doesn’t go away. I don’t have the flu, or a cold. I don’t just get better. Sometimes I may do things like spending a day out with my kids, but the next week I may not be able to the same.
I have a collection of braces and supports. I use these to keep myself walking and moving as much as possible. Each day I take a large collection of pills and supplements. I don’t do this because I enjoy taking medication. I do this because I want to maintain my health as long as possible.
There is no magic cure. No matter what people say about fad diets, salt lamps, meditation, yoga, vitamins, essential oils, or whatever else they are trying to sell there is nothing that will stop my illness from existing or being degenerative. So I go to physical therapy twice a week. I do my exercises every day, even though I am often exhausted. I do cardio as often as I can. I try to rest when I can (I’m a mother, it is hard). I try to be forgiving of my body (also hard). I use supportive wear. I take my medication and supplements as directed by my medical team.
Just a few of the things I need to get through a day, including my cup of coffee.
Hard to believe my puppy is so grown now. Got news from my cardiologist this week. He confirmed my POTS diagnosis and also told me I tested positive for MALS. I need more testing but I will most likely need surgery. I don’t know how that will effect our training. Hopefully it won’t complicate things too far. I also dislocated my shoulder this week (thanks to EDS it popped back into place) which left me with some lingering pain and nerve issues in one arm. It has made handling the dogs harder. We will get through though, we always do.
We took another short trip to Petsmart for a weigh in and to continue exposure to people and other animals. Yarrow did even better this time than she has in the past with ignoring other dogs and people. Though she is definitely entering adolescence and having some issues with distraction, bouncing, and just general foolishness when we are out (I know I have not spent nearly enough time training her lately either) she did really well for being in a petshop. Scale says 52.4, so she is still growing though she has slowed a little. I am feeling pretty good about her making weight. She also seems to have put on about an inch in the last week, she looks suddenly tall standing next to Freyja.
While we were out we decided to try an outing in vest. We went to Lowe’s so it would be low pressure. We weren’t really shopping for anything, just looking at Halloween decorations and bathroom fixtures to finally fix the boys’ bathroom. It did take a little while to get Yarrow calmed down enough to walk across the parking lot without pulling. She was still very excited from the petshop (next time we will do our “formal” outing on a different day from petshop trip, LOL). However she did very well once we were inside. She is very serious in her vest. She had no fear walking beside the cart, or next to the Halloween decorations. She walked up to the life sized witch and gave it a sniff (gave her a little leeway on that as it was a display model in a garden store) and looked up at all of the inflatables when I pointed to them but seemed completely disinterested. No sign of fear.
We checked out shower stalls, new vanities, and tile. Then took a walk through the cement section with no concern on Yarrow’s part. I was feeling pretty worn out so we headed back to the car. I do think we found the bathroom fixtures we wanted. Yarrow was far better than I expected. Laid at my feet when we stopped, ignored people who pointed at her, and walked next to me politely most of the time (good for a dog who hasn’t had nearly enough heel work on leash out of the house). I am hoping to do more work in Lowe’s and maybe Half Price Books in the next few weeks.