My Spirit Is Broken on My Road to Recovery
I was lulled into thinking that I could give American healthcare another chance. I had a 14-day stay at the James A. Haley Veterans’ Hospital in Tampa, Florida, where I was treated like a VIP. I heard about the culture shift throughout the hospital, and I felt it through and through. From the nursing staff to the intern who took the time to share his own history of an autoimmune disease, I received excellent care.
Then I was released to a 24-hour rehabilitation center. I had lost 20 pounds in four months, most of it muscle. I have a hard time standing, and stirring a cup of oatmeal gives my wrists a good workout. After my hospital stay, I somehow expected the less critical care in a rehabilitation space would be even better.
For those who are reading my column for the first time, I live abroad. I return to the U.S. for routine primary care visits to ensure my veterans benefits don’t lapse, but my specialists are in the country where I live. For my most recent trip to the States, I only packed a few items of clothing for what will likely be a two-month stay by the time I am released.
On my first day at rehab, I was taken to a private room without any information about my stay. When I asked a friend to take me to retrieve my carry-on bag with my clothes, I was told I was in isolation and could not leave without the doctors’ permission.
The next day, my only meal was almonds and a protein shake that a friend had brought. My weight had dropped to 99 pounds on my 5-foot-7-inch frame. I needed to gain weight, which is hard to do with snacks as my meals. Fortunately, a loved one advocated on my behalf, and some of the issues were resolved. Loved ones stayed with me for the first week to ensure I received proper care.
Some might wonder why I didn’t go home, but my immune system was too compromised to fly. And at home, the trip from my sofa to my kitchen sink would leave me breathless. I couldn’t carry my laptop. I needed daily rehab to figure out how to function again. Because of my desperation to be independent and not homebound, I felt stuck.
When I first arrived, I would ask and remember everyone’s names. I would chat them up and learn about them — that is my way. I like to get to know people. But eventually, I stopped being me. Now when someone new comes into my room, I keep to myself.
Over the years, I have talked about the importance of having trusted people to advocate on your behalf when you cannot. I am happy that I took my own advice. I hope that you have dedicated friends and family who would be willing to do the same for you. I have witnessed firsthand what it means to have people on my side.
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.
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Comments
Kimberly Bruce
The lowest point of my life was when my appendix burst. This came barely a year after I had been diagnosed with SLE, my (ex) husband leaving me, and after I had quit my 15 yr job due to my health. As I lay in the hospital bed for 2 horrible weeks, I had no to fight for me. I was in a great deal of pain from the surgery but every doctor, nurse, whoever I had to constantly remind I had SLE and Sjogren’s, so when I would request my medication for pain, they thought I was just wanting more pain medication. And since my appendix burst and infection basically covered the inside of my abdomen, I was on a drain tube, NO WATER, WITH SJOGREN’S. I cried every day. When they finally released me against one doctor’s orders ( multiple doctors, only one came to see me and he wanted me to stay bc he said he was afraid I would abscess, I did 2 wks later), I told him I would rather die then come back, almost did. Then, the topper of the story was my Rheumatologist was upset she was not contacted about the pain medication I was prescribed while in hospital bc she thought I could have taken both(I did not as I was constantly drug tested in hospital) and immediately drug tested me.
Kellie McRae
Oh Kimberly, I'm so sorry you had this experience. I want so badly for our healthcare system to truly focus on health and not financials. I pretty much lost faith in our system and that's what prompted me to leave the country. The care I got at the VA this go round was what I would love to see everyone receive. For doctors to think you were a drug seeker when they can clearly see your medical records is shameful. I can't imagine anything inside of our bodies bursting and it not being extremely painful. I hope you never have to endure anything like that ever again. Please know that when you are not being treated right, there are channels to pursue to go on the record to complain. I know that it may seem fruitless but it gives you something credible to stand on should you have to hire representation or prove that you have not been getting quality care. Its so hard to advocate on your own when you are in high levels of pain and it sounds like you were having to do just that. I hope next time you have to go to the hospital that you will call your rheumy and let her know where you are because she sounds like the one that would have gotten things done on your behalf. I hope you are feeling better and are in higher spirits. Its not easy what we deal with but you keep hanging in there, I'm hanging right here with you :-)