Showing posts with label Lupus. Show all posts
Showing posts with label Lupus. Show all posts

Wednesday, April 18, 2018

Momma Bear Got to Roar by Konnie Enos

I’m sure any good mother would be protective of their children when the need arises. When you have children who are disabled in any way that protectiveness goes into overdrive. I should know. I’m the mother of five wonderful children and they all have their individual trials, including one on the Autism spectrum (high functioning) and two with health challenges, one of those major ones.
With her long list of diseases and conditions she has faulty collagen, loose joints, and issues with her heart, and her digestive track not functioning as it should. All thanks to EDS, Mast cell disease, Lupus and Gastroparesis. And those are just the major highlights of her list.
Over the last eight months she’s been in and out of hospitals and going from one doctor to another. Sometimes as much as four in one week.
This last month has been more of a nightmare. She’s been to the ER every single week, as much as a couple of times. Then the week before Spring Break she went back to the ER and they admitted her.
Things went well the first couple of days. They seemed to listen to her about her reactions to medicines and then they determined her issues seemed to require surgery.
Things went downhill from there.
The surgery was on Sunday. By Wednesday they had not given her any nourishment of any kind and were concerned that her blood sugar was so low.
NO DUH! You aren’t feeding her!

Then four, yes FOUR doctors invaded her room and made every effort to brow beat her into submitting to their treatment plan and when that wasn’t working one of them took me out of the room and suggested she needed a psychiatric evaluation.
I not only told him in no uncertain terms my daughter was of sound mind, but I also told him he was NOT paying any attention to the fact she had Mast cell disease. She AMA’d (she signed out of the hospital Against Medical Advise) shortly after that.
As she left one of the doctor’s, expressing that he thought she was making the wrong choice said, “I hope we don’t see you back here anytime soon.”
By Friday it became clear, from the pain she would have to return to a hospital, but she refused to go back to the one she’d just left. So we found another one. (Thankfully this is big city and it was easy to do.)
I can say this much for the staff at this hospital. They were very thorough in running tests to figure out what the problem was and seemed to listen to her about her reactions. One of those tests required her to go under anesthesia again. Thankfully it also helped them find and fix the problem.
The problems arose after that.
As they were preparing her for that test, she said she was feeling nauseous. After the procedure she started throwing up.
Every doctor and nurse we came into contact with the rest of that day insisted it was because she’d been under anesthesia totally ignoring the fact the nausea started BEFORE they took her in to do the procedure.

I had gone home to get some sleep but my dear daughter called me back with a text. She was still throwing up.
I had to find the nurse and tell her to disconnect the medicines being pumped into her by IV.
She hasn’t thrown up since.
She spent the next day refusing all treatment.
The doctors and nurses repeatedly told her it was her choice while also stressing she would die if she didn’t continue treatment.
While my husband and I were visiting with her one of the doctors came in and tried to get her to submit to their treatment plan.  
According to my husband I was rather thorough in chewing him out when I told him the failings of his plan.
I know I told him she couldn’t move and was throwing up while they were pumping all that medicine into her and she only started getting better when she stopped all of it. I also again, reminded him, she has Mast cell disease.
All I could think was that when the patient it reduced to a nearly vegetative state and is lying there repeatedly throwing up when they have had zero nourishment in over twenty-four hours THERE IS SOMETHING WRONG! When all of that slowly subsides when the patient STOPS ALL medicines, THEN one can conclude continuing treatment IS NOT the best plan for the patient.
Yes, I went a little Mamma Bear on him.
And yes, I helped her AMA right out of there.
Yes, she has been improving daily since then.
Sometimes you gotta do what you gotta do.
Smile. Make the day a brighter day.

Also Posted on my daughter's, May Enos' blog, Price of Genetics (it will be up at 9 a.m. April 18th).

Wednesday, January 28, 2015

Momma Bear’s Ready to Roar

I’m sitting here coughing and sniffling and it suddenly hits me that I have to write the blog this week. With my body aching, writing anything is, well, a chore.
I’ve seriously started this three times in some attempt to come up with something. Anything. But since my own health is currently taking a slight blow, my brain is stuck on the subject of, well, health.
I do have some chronic health conditions, which are currently well controlled and I’m actually in good health, generally speaking. Bonnie has serious chronic health conditions and has to monitor her conditions daily. Now that she lives alone I have reasons to worry, though she has friends nearby who worry faster than I do, which is good.
But if you were to see either one of us, say at Walmart, you wouldn’t be inclined to describe us as young and healthy. Well, unless you were already an adult back in the early sixties when we were born and therefore could still consider us kids.
On the other hand, if you were to see any of my adult daughters you could describe all of them as young and healthy. People do it all the time. And the men in my family, especially my two boys, get so frustrated when I let the two who still live at home get out of chores because they don’t feel well or it makes them sick.
You see, both of my younger two daughters have auto-immune diseases.
My youngest daughter has migraines and Fibromyalgia. ‘Flares’ mean muscle soreness which could be all over or localized, or sensitivity to light and sound. Sometimes she gets them both at the same time. Now imagine doing dishes or cooking dinner for a family of six under those conditions.
Yeah. Not happening.
The older of the two girls, my middle daughter, actually has two auto-immune diseases. Fibromyalgia and Lupus. So she not only gets the muscle pain, but she is also sensitive to sun and florescent lights, and Lupus is known for sapping energy. She can’t do yard work and we can’t use the florescent lights in our kitchen. Plus she often doesn’t have the energy to spend a half an hour or more doing dishes or cooking dinner.
Through her Lupus support group she found a post, a blog or something, by someone trying to explain what Lupus was to a friend. This woman told her friend something she dubbed “The Spoon Theory”. This theory is basically that those with auto-immune diseases, in this case Lupus, though I think it applies to all of them, wake up each day and have only so many spoons. Spoons represent energy, and if you don’t have any you can’t do your chores, or much else.
The thing is, just looking at someone, you can’t see auto-immune diseases. Unless you can recognize a Malar, or Butterfly, rash for what it is, how would you know someone has Lupus? How many people realize Michael Jackson had Lupus? You can’t see someone’s reactions to pressure points unless you actually touch them so how would you know by just looking that they have Fibromyalgia? And how about those times when they aren’t experiencing any symptoms?
It all comes back to what I’ve always said. Don’t judge a book by its cover.
If you want to make this momma bear, currently pumped with menopausal hormones, really ticked off, tell one of these two beautiful young ladies they look young and healthy or that their health problems are all in their head.

Yeah, that can rile me, even as sick as I am. How’s that for a picture?