Life with Lupus: things happening for a reason

This is a weekly column about living everyday life with lupus. It is written by Catherine Daniels.

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Have you ever wanted to do something that would shape the way people think? Nothing ground breaking; just that something small but powerful. I have spent the entire course of my life trying to figure out how I was going to make that happen. They say nothing is a mistake and that there is a reason for everything we do and or say. For example, I spent some time working with young adults with disabilities. The goal was to teach about grooming and self- esteem, but it seems they taught me. I got far more out of the experience than anticipated. I draw inspiration from the moments I make doing for others.

I think that I take my life for granted. Truth: I have Lupus and it’s not going away. Truth: My family and I are currently without a permanent, home but it seems to have brought us closer together. Before the intrusion of lupus into my life I thought things were pretty great with parenting, homemaking, career and all those other things. Life was good. But complaints come with life. You can’t do too much in life without some bumps in the road. When we set out to design our lives, we can never assume that things will go as planned. In my design I would have never planned homelessness, but it happened and we are dealing with it

Every day I live with the “my life should have been different” thoughts. Sure things could have been different but I would not be the person I am today. Learning to adapt is one of those things that are built into our thought process at birth. When leaving the womb immediately we have to adapt to air, sounds and touch. When we meet our first friend, we have to adapt and so on. Adaptation is a necessary part of life.

With Lupus and Homelessness, the rules are the same. We had to adapt from the wholeness of health, to a lifestyle upheaval of mind, body and soul. Homelessness is different. There are labels that society has put on homelessness. Technically, though, we are not homeless. We are what is called a displaced family. We have a temporary roof over our heads and clean beds to sleep in. Whether its homeless or displaced there are things that make each of those separate. The ease of dependency when you are homeless comes in the form of outreach intakes. When you call Central Access Point there are people there trained to resource agencies on the behalf the homeless client. Then with displacement you are researching resources on your own and creating opportunity. This is where we live. We had to adapt to living out of a suitcase, and learning to make cooking and cleaning a simpler task. There are more things, but I don’t want to go into everything I do.

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Life with lupus: the holiday blues

Life with lupus is a weekly column written by Catherine Daniels, a good friend who also has the chronic disease of lupus. It is our hope that through this column, the world can gain a better understanding of life with lupus.

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It’s really hard to stay in the moment when you feel so bad. There is no Christmas joy here. Don’t get me wrong I really appreciate my family and roof over our heads, but this is the first Christmas I just don’t feel it. The fact is that my body is extremely achy. There is no money for gifts, no visits and an extremely brief conversation with my father. I feel so bad that I could not be a better daughter, sister and aunt. Not of my own making but nonetheless upsetting.

“It’s really hard to stay in the moment when you feel so bad.” – Catherine on life with lupus.

I have a new fetish: watching video blogs. It’s like living vicariously through others. I don’t know if its strange or not, but I have a strange attraction to Aussies. I really love Australia. It’s so beautiful, just like the people. The Great Barrier Reef is just gorgeous. Watching videos is one thing that I do to take my mind off the hard things. I could wallow in that the holidays are hard. Or I could watch videos.

There are days when I can’t get out of bed, so I have to find things to do while lying down. I have succumbed to the fetish I call youtubeitist (yes I made that up. Don’t judge!!!). I was reading a blog of this 14-year-old girl in Brisbane Australia. I felt so bad for her. At her young age she had lost one her kidneys. She was so brave; I did not even know her but I felt connected to her. She was video blogging from bed and I was blogging from bed. Sort of like kindred souls connected through common ailments.

So I’m back on YouTube and I cannot stop watching a video blog of a couple. Their names are Jamie and Nikki. They are a really cute young couple. I cannot get enough of them. Maybe I envision my life being like theirs. I think I am drawn to happy couples and maybe I can even vibe their youthful karma. They are on my watch list. I’ve been watching them from their very sweet engagement thru their first pregnancy. They are so young and so together. I envision my Lamar with a wife and life like theirs. He however would be to different. But that’s mom talk!

At the end of the day, yes I have Lupus and yes we are without a permanent home. Most days I’m missing my little chubby (our doggy). Things are bad but not the worst. Life feels grim but there is grimmest. So I will look to a better day tomorrow. Thanks for checking out my blog post and I will see you next week.

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Life with lupus: My friend the meds

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This is my good friend Catherine. I interviewed her for the Q&A about a month ago. She has lupus, a chronic condition she will have for the rest of her life. Lupus is often called the invisible disease because much of the suffering is not necessarily visible to all. This week she writes about medication and lupus.

People with lupus take lots of medication. I easily take over 20 pills each day, which can create an adventure in and of itself. A few of the different types of medicine used to treat and manage Lupus:

  • Aspirin
  • Anti-Inflammatories
  • Acetaminophen (Tylenol®)
  • Ibuprofen (Motrin®), naproxen (Naprosyn®), indomethacin (Indocin®), nabumetone (Relafen®), and celecoxib (Celebrex®).
  • Corticosteroids (also known as glucocorticoids, cortisone or steroids)
  • Antimalarials
  • Immunosuppressives (Immune Modulators)
  • Cyclophosphamide (Cytoxan®)
  • Methotrexate (Rheumatrex™)
  • Azathioprine (Imuran®)
  • Anticoagulants
  • Monoclonal antibodies
  • Benlysta (belimumab, formerly called LymphoStat-B™)
  • Repository Corticotropin Injection (H.P. Acthar Gel)

As you can see, there isn’t just one medication for lupus. When taking many pills, it can be hard to keep up with it all. As I mentioned in previous columns, you have to just laugh to keep going. What else can you do in this situation? Here are a few funny things I’ve done or have had happen to me:

  • You’ve looked for your sun hat while wearing it.
  • You have to count the amount of pills left in the bottle to tell whether or not you remembered to take your pills that day.
  • When you know another month has passed, only because it’s time to refill your meds!
  • You’re embarrassed to admit it’s because you’re lost, 3 miles from home.
  • Your husband calls you by your Native American name “Dances with Lupus.”

This is just the tip of the iceberg. In my conversations with other Lupus sufferers, there are so many other medications. I know that I take at the minimum of 22 pills a day. All combined creates a totally new drug with all the side affects you can think of.

With there being so many different types of lupus, medicine can be totally different combination. It can be very frustrating to have a doctor visits and have them tell you that they would try a new treatment. It’s hard not to feel like a lab rat when trying to treat your particular type of lupus.

In the words of Mary Poppins” a spoon full of sugar make the medicine go down.” True words!!

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