How Lupus Has Dramatically Changed My Life, Part I: Medical Treatment

In my very first post, I talked about all of the symptoms and struggles that led to my Lupus diagnosis, but I hadn't gotten into how my life changed after the diagnosis. My life has changed dramatically in the last two years since and I feel that it is important for me to share these changes in order to bring more awareness to what life is like for the chronically ill. I'm going to talk about these changes in terms of two categories: medical treatment and lifestyle. This post will be focused on medical treatment and I will talk about lifestyle in the next post.

Medical Treatment*
Right away after receiving the diagnosis, my life was drastically turned upside-down because putting out the Lupus fire became the number one priority. As I mentioned in my first post, by the time I was diagnosed, my muscles were so tightened, I ended up with Pelvic Floor Dysfunction, which caused me not to be able to empty my bladder. So the first year of my diagnosis was spent in weekly (sometimes twice weekly) physical therapy appointments designed to help me perform one of the most basic bodily functions. I also had weekly acupuncture appointments where I was given E-Stim treatment of my tibial nerve. In layman's terms, I received electrical currents via needles placed in my ankles in the hope that my pelvic floor muscles would relax enough to let me go to the bathroom. I also underwent weekly cupping treatments to help relax the muscles in my back and shoulders.

Besides those weekly appointments, I was referred to a cardiologist because I was diagnosed with orthostatic hypotension, which meant that my blood pressure would drop when I went from sitting to standing. This manifested in me experiencing extreme dizziness every time I got out of a chair. The doctor prescribed compression socks. She explained that my blood wasn't moving quickly enough from my legs to my heart when I stood up and that the compression socks would help with this problem. So now I religiously wear knee-high compression socks during my waking hours. Before you feel sorry for me, these socks are not your grandma's socks anymore.  You can find some really cute ones. I also had several other tests done, including EKGs, ultrasounds, and monitoring my heart rate for 72 hours. I learned that I have two heart murmurs and that one of my valves is thickened, which could be due to the Lupus, but we don't know for sure.

During this time I also began what is now likely a permanent regimen for my gums, since the Lupus caused enough gum inflammation that I ended up having surgery. I now have to alternate appointments between my dentist and my periodontist for my cleanings and I have to go every three months. I still have another surgery to do, but I'm waiting until I can prioritize it in my budget.

The other permanent regimen of visits is with my Rheumatologist, the specialist for the Lupus itself. After the initial diagnosis, I had x-rays taken of my lungs and my bones to insure there was no major damage done to either (luckily there wasn't). Then I started visiting my "Rheumie" once a month. During these visits, I have blood and urine tests done every time. I now have a six-page report of numbers we analyze every month to make sure the Lupus is under control and I keep those reports in this binder of medical records.

As you can see, it has gotten quite thick in the last two years.

In terms of medication, I was initially prescribed Prednisone in order to calm the inflammation down. Prednisone is extremely effective at quieting inflammation, but it also has crazy long-term side effects, so the goal was to wean me off of them as soon as possible. I started at 12 mg and it took about 15 months to get me safely down to 0. I was also prescribed Plaquenil, which is the go-to drug to keep Lupus in control, even though it is not actually designed for Lupus. It was actually an anti-malarial that just happens to calm down the Lupus inflammation. I take that twice a day, for a total of 400 mg.

Over time, I have been prescribed an anti-seizure medication (Gabapentin) for my nerve pain, a muscle relaxant (Flexeril) for my muscle pain, and a prescription-strength NSAID for my joint pain (Meloxicam). Lupus patients can have chronic dry eyes due to Sjogren's Syndrome, so I have also been prescribed Restasis by an eye doctor. This same eye doctor has to check for Plaquenil deposits in my eye once a year because there is a risk of vision loss with long-term use of Plaquenil. It's very rare, but it's still a risk.

I have so many medications and supplements, I keep them in a shoe box and I use a pill organizer so that I don't forget to take my medication. Lupus patients experience "brain fog" and it is really easy to forget whether you did something just 5 minutes before.

Finally, although I take a few different supplements, I am going to talk about the one supplement that is now medically necessary for my survival:  Vitamin D. Most Lupus patients are sensitive to the sun's UV rays so we cannot get our Vitamin D from its most natural source, the sun, because we cannot be in the sun. So I take Vitamin D3 daily. I'll talk more about the sun in my next post when I discuss how Lupus has affected my lifestyle.

I absolutely must end this post with a note about the health care debate. If it had not been for the Affordable Care Act, or "Obamacare", I would not have had access to the doctors who ended up diagnosing me and I would not have had access to any of the treatments that helped get the Lupus under control. As an example, please try and imagine how painful and uncomfortable it was for me when I could barely empty my bladder. Now try to imagine having that disability and not being able to get the proper treatment for it. I don't even know where I would have ended up.  Would I have gone to the Emergency Room? Would they have known what to do there? The proper treatment was one that lasted a whole year and because the Lupus seems to have caused some permanent damage to the muscles and nerves associated with this region, I was told I would have to be doing the physical therapy exercises I learned for the rest of my life. There is no way that solution would have come out of a visit to the Emergency Room.

We simply must have better, more comprehensive care for all of our citizens. Believe me, I understand the existing system still needs improving. I agree that my premiums are still difficult to pay, but I am so grateful for the access. Thanks to all of the treatment I have received so far, I am doing way better than I was two years ago when I was diagnosed. I would hate to go backwards. I am certain I was headed towards being housebound, unable to work. Now, I still get to perform, I'm teaching, and I have a side job in retail that is quite physical. The only reason I can do all of these things is because of my healthcare. Access to healthcare has helped me have a new sense of normalcy within my new Lupus lifestyle. I don't want to imagine how drastically worse off I would be without it.

* I am not a doctor. Anything I share here in terms of medication and supplements is part of a treatment plan coordinated with my medical team and should not be taken as medical advice. Please consult your own doctors re: your own treatment, drugs, supplements, etc.

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