The Medical Freight Train

It has been awhile since I have been here. Life has a way of grabbing you and swirling you around until you forget to do the things you love.

In the last year, Taylor (now 23) has been diagnosed with Ankylosing Spondylitis (AS), a rare type of arthritis that causes pain and stiffness in your spine. This lifelong condition usually starts in your lower back. It can spread up to your neck or damage joints in other parts of your body. Because of the inflammation, and the immune response of the body, the body attacks itself and her spine will actually begin to fuse together. It can even fuse the ribs, which makes breathing quite difficult. It was a long journey, but she finally got diagnosed and was put on a Humira injection. The Humira is a biologic with some nasty side effects, but she stated that she would rather live her life now than wait and worry about what might happen. The Humira gave her her life back. She started going to the gym (she lost 65 pounds), she started food prepping, and had all kinds of energy. She started a job as paraprofessional, first for troubled teens, and then in the elementary special education department. She decided to go back to college (online) and is now working towards a dual licensure to teach. Her main focus is on special education.

Unfortunately, fate is a bitch, and she isn’t done with her. She started having numerous stomach issues, and is now being tested for Crohn’s Disease or possibly Ulcerative Colitis. But wait, there’s more! In the last month she has gone from an active girl who took a trek around a mountain in Tucson in March to wheelchair bound. She started passing out, with little warning and would land flat on her face. The first time we chalked it up to fainting. The second time, I took her to the ER. These last six weeks have been hell for her. She has no warning, just falls. Once I get her roused, she can’t use her legs for a good 45 minutes. She has had enough CT scans and MRIs in the last month to last a lifetime. She eventually landed in the hospital for observation. They discovered she has Postural Orthostatic Tachycardia Syndrome (POTS). POTS causes the blood to pool in the bottom of the body, and when that happens, the brain overreacts and the heart rate skyrockets, and it can lead to fainting. But wait, there is still more! She also as orthostatic hypotension, meaning her blood pressure also plummets at times. Her heart has always had tachycardia, running on average at 130bpm. They slapped a heart monitor on her and learned that she is exhausted because her heart is a constant state of… well, imagine if you ran on a treadmill for 24 hours a day. I guess that explains the exhaustion. The kicker is that these two diagnoses are almost never given together. Because she has both, the meds that work for one will make the other worse, and so on and so forth.

She has seen a specialist and has been put in a wheelchair. She can’t drive. She can’t work. She can never be alone. She is being referred to Mayo Clinic, but, in the meantime, they are trying a couple of medications. She is continuing with college online. We were told to file for disability. We were given handicapped placards for the car. In just one short month, she went from encouraging others to workout with her on Instagram to needing 24 hour care.

Is there hope? Yes, because you must always hope. The electrophysiologist (they deal with abnormal heart rhythms) has run a bunch of tests. They did find out that, while her heart is a workaholic, it is strong and healthy. However, her conditions are permanent. BUT, they do hope that with the right medication, and from help at the Mayo Clinic, that she will be able to, eventually, get back to some semblance of a life. She will always struggle, but perhaps we can get rid of that wheelchair (for the most part). She has remained amazingly upbeat, and even stated that she was going to finish school because if it comes down to it, she can teach from a wheelchair. We were told that this is not going to be easy, and to plan on this being a long-term battle. It is going to be managed with baby steps, and we are just starting to work through it.

We set her bed up in the living room so that she doesn’t have to try to navigate the stairs. We removed part of our furniture to make sure she could wheel herself around the house. But, this is a temporary solution. I have been looking for a new place, and now realize that my best option may be to build and to include a separate living quarters for her. She could then have her privacy, and I will have mine, but I will be there when she needs me. For now, we are just making do with what we have.

They said that the syncope episodes are not harmful, other than the fall danger, but how could the brain reset that many times on a continued basis and not have some kind of issue? She has syncope episodes up to five times a week, sometimes more than one in a day, which have now progressed to happen even when she is seated. We have her belted into the wheelchair, because when she goes out, she goes out forward and lands on her head.

For me, this has put me in a constant state of anxiety. I am to the point where I even sneak downstairs at night to check to see if she is breathing. I am trying to be there for her. She has saline infusions a couple of times a week, she has counseling appointments (thank goodness), and she has multiple medical specialists to see. So, we trudge forward. I take her to work with me when I can, and leave her with family when I can’t. But this isn’t a permanent solution, and we are looking into possible PCA services. I do know that I can’t keep running on empty like this. I know that sounds selfish, but I also know that I still need to function, to work, to take care of my other children and to make sure they all have exactly what they need. That includes a mother who isn’t so tired that she falls asleep before her head hits the pillow and then wakes up in the middle of the night in a state of panic and concern, unable to return to bed.