A Day In My Life With Lupus (FMS is close to same)

Discussion in 'Fibromyalgia Main Forum' started by JLH, Jun 4, 2006.

  1. JLH

    JLH New Member

    A Day in My Life as a Lupie ........

    by RemedyFind Columnist and Lupus Host - Sue Davis


    Let me start with the statement that every single person with lupus is different. Lupus has been called the “disease with a thousand faces” for good reason. It can affect any part of the body, although some organs are more susceptible than others are, skin, kidneys, heart, lungs, digestive system, and brain, to name a few.

    My disease primarily affects my joints, brain, digestive system, and skin. I think the brain part is what makes it the most difficult.

    I start my morning every day at the same exact time. I set my alarm so I can take the first pill of the day. I then have 1/2 hour before I take the next pill, then an hour after that I eat breakfast, taking a medication with it. Because I also have Sjögren’s Syndrome, an autoimmune disease that attacks the exocrine, or moisture-producing, glands, I have to be very careful about my oral hygiene. Lack of saliva causes a lot of dental decay. Therefore, I am off to carefully clean my teeth and use a fluoride rinse.

    One hour later, I take 10 more pills. These consist of prednisone to control inflammation, CellCept to inhibit the immune system, folic acid (because I am also on a medication that requires I take it), an antidepressant, and a medication to increase salivation.

    By this time, I need to head to my rheumatology office visit. (I see nearly a dozen specialists, so between them I average about two doctor visits each week.) This is the third visit to this rheumatologist, but I am still confused about how to find the office. Walking through the parking lot is a slow process, as my feet, knees, and hips hurt. I also do not have very good balance—ataxia, it’s called. The visit goes well, even though I forget to ask some of the things on my list. One of my problems is “cortical blindness”, or the inability to see some things in front of me. This includes my own writing.

    I need to have my venous access port flushed, as I do not need to have lab work done today. This needs to be done at the hospital about a mile away. I find my way to the lab without too many detours. I discover that while they can access my port, flush the port, draw the blood, and de-access the port, they cannot do it without drawing blood—unless I am admitted to the hospital. This is a major stressor for me. Stress equals confusion. The more stress, the more confusion I experience.

    I was sent upstairs to the ambulatory surgery unit. Someone from the lab accompanied me so I would not get lost (thankfully!). Once there we decided that the best way to approach this was to get my doctor to order some lab tests so my port could be flushed at a much lower cost. The doctor’s office was closed for lunch, so the nurses suggested I go to the cafeteria and sit down. It was just down the hall to the elevator; go down one floor and turn left. I do not know how I managed to get lost, but I did. More stress, more confusion.

    Once in the cafeteria I was so confused that I had to stand there until I recognized something. I headed to the beverages. Aha! I had something! However, where would I find the French Dip that was the daily special? I asked at one counter and was sent to another. I stood in front of the cook, waiting for her to ask for my order. She ignored me. Weird, I am not small. I caught on when someone came up and wrote up their order to hand to the cook. Why had I not seen the sign in front of my face?

    Now I had to figure out where to pay. Both the cash registers said, “Closed”. I waited until I saw someone else pay and got in line behind her. Actually, when I got there I noticed that only one register was closed. My head was spinning. It felt like it was full of swirling fog. I was very close to tears. It was not until I sat down that I remembered I had missed the medication I was to take one hour before eating lunch. I also forgot the lunchtime medication.

    While I ate, I carefully watched to see what people did with their food trays when they were done eating. It took me a while to figure out why people kept going to one particular corner of the room. After lunch, I made my way back to the ambulatory surgery center, where they sent me back to the lab. They handed me a hospital map, but I was still confused. They decided to send me down a straight ramp and out a door. I could then go across the street to another building and go upstairs to the lab.

    I only found myself lost once going down that straight hall/ramp. I could not remember if she said to go out the first or last door. Did I mention that I had forgotten my keys in the house before I left home? I had a spare car key in my purse, fortunately. Getting back into my house was weighing heavily on my mind as I painfully made my way back to the lab. By the time I found my way back to the lab, my doctor had faxed in an order for some minor blood work. The infusion nurse was able to come flush my port and draw one tube of blood. I was done!

    The stress of the day had taken its toll. I cried all the way home. I was able to contact a neighbor who had my spare house key. That helped. When I got home, I took another of my meds. I waited one half hour later to take a second one, and one hour longer to eat dinner. Two hours after dinner I took another literal handful of medications. I spent 15 minutes on my dental care, 15 minutes on my eye and skin care, and then cried myself to sleep.

    It took four days to get past the stress and extra brain fog my trip caused. All my symptoms got worse. During those days, I was barely able to carry on the basics of living. I stayed inside my house. The good news is that with time and the help of friends, these symptoms are going down now. I find it very frustrating to feel that my brain can be so unusable at times, but it is not always this bad.

    As I said before, we lupus patients are all different. This was a day in the life of one particular person. If you look through all of my articles, you should be able to tell that some months I have a much better use of my brain than other months.

    If you saw me wandering around, lost, in a grocery store, would you realize I was disabled?
    [This Message was Edited on 06/06/2006]
  2. hugs4evry1

    hugs4evry1 New Member

    Sounds just like me a few months ago. Spooky....

    Nancy B.
  3. JLH

    JLH New Member

    Unfortunately, I can really relate to this.


    Janet
  4. libra55

    libra55 New Member

    I have had days like this, believe me. I have Crohn's Disease in addition to FM. It has affected my GI tract, eyes, joints, and skin. I have also been tested for Lupus, but nothing positive on that. I have the dry mouth with cavities and I use a prescription fluoride toothpaste at night.

    Some days it is like Sisyphus (sp?) pushing that rock up the hill. The pain, the confusion, the mounting frustration and anxiety, the disorientation.

    This was a very accurate and touching description of what it's like to live with multiple autoimmune involvement.

    Michelle
  5. mimilove

    mimilove New Member

    hello jlh....need to get back with you not today though...have to get pictures taken of my thyroid..see ya

    mimi

    PS: Been wanting to get back with you, but lost the post, forgot I could check under my user name and in sooooo much pain with my hands lately, can barely just barely type.

    I am going to ask for another raincheck JLH but wanted to say I think this is kind of where I am heading??? My last test was negative....Dr told me that once negative never ever positive.

    Neurosurgeon I went to see, is kind of insisting Lupus. I see the butterfly rash, especially after I wash my face.

    Will get back with you.

    Thanks to much pain to type.

    Mimi[This Message was Edited on 06/12/2006]
  6. AnneTheresa

    AnneTheresa Member

    Thanks for posting this. It described very well a typical day that, sadly, I can relate to all too well. God Bless, Anne Theresa

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