The theme of the 13th Chronic Babe's Blog Carnival is: how do you handle a crisis? There are always times when things go terribly wrong with your health or a personal issue no matter how hard you try to take care of yourself. In this blog carnival, we are going to blog about how we prepare for such turn of events, how we cope in the middle of everything, and how we recover from it.
A crisis is a crucial or decisive point or situation; a turning point, an unstable condition, involving an impending abrupt or decisive change, a sudden change in the course of a disease or illness, toward either improvement or deterioration, an emotionally stressful event or traumatic change in a person's life, a point when a conflict reaches its highest tension and must be resolved. Synonyms for crisis are: crossroad, head, juncture, pass.
For me, I can live with the pain, but the fatigue is killing me. When I wake up in the morning, which is bright and early--about 6:30 or 7:30 a.m.--I have so much fatigue that I literally cannot physically get myself out of bed for four to six hours. That is a lot of time that I am losing each day, which is adding extra stress to my life. Of course, this isn't anything that unusual for me. I tend to have ups and downs all the time with my many chronic diseases. I just have to take it a little slower and easier for a while, and slowly increase what I do each day until I am back to my normal activity schedule. But for some reason, this time around, I have had a flare with my fibromyalgia, sjogren's, and psoriatic arthritis. To top it off, I only have my period every three months, and this is the month that I will have my period, so I am also PMSing! I have psoriasis on my scalp, I am having muscle spasms, fatigue, bowel and bladder spasms, headaches/migraines, forgetfulness and confusion, and extremely dry mouth and eyes. I ended up getting a new prescription steroid foam for my scalp. I am on a new medication for my fibromyalgia--Savella. I began taking a migraine medication again--Topamax. I had to go to my eye doctor because of scleritis. I had silicone tear duct plugs placed in my eyes two days ago to help to keep what little tear production I have on the surface of my eyes.
Basically, for me, I have to always anticipate that a crisis with my health could be awaiting me around the next corner. It is one of the main reasons why I cannot go back to work because I could need another joint replacement at any moment. After all, that is how this whole blogging thing got started in the first place. I had my right shoulder replaced in March, and although I knew that both shoulders were in extremely bad shape, I would have never thought that my shoulder would collapse ahead of my other hip or one of my knees. And yet, it did. If I had taken a job here in Atlanta, I would have had to quit by now, and we hadn't even been here four years. So as you can see, planning and foreshadowing what could and will happen next is the only way that I can live my life. So I have a doctor for every single part of my body. I plan trips accordingly. I make sure that I get my Remicade infusion just before a trip so I have more energy. I make sure that I get all my prescriptions filled before I leave to go out of town. I check out every new symptom immediately, and everything that has changed as soon as possible even if I think it might not be anything at all.
This is important because with my eyes for example, I made an appointment with my cornea specialist when I felt like I was getting a sore on my cornea. I have a history of uveitis, iritis and scleritis because of the sjogren's and the psoriatic arthritis. My eyes have been especially dry lately, and I have had to use not only the Restasis twice a day, but also artificial tears during the day and eye ointment to lubricate my eyes at night. Well since May, they have been exceptionally dry, but in the last couple weeks, they have been scratchy, sore, the vision was a bit blurry and even looked as though they had a spot on each one of their white areas. So I felt it was time to see the doctor. It turned out that they were much drier than they were previously in May. They did have a spot on each eye in the sclera, or white part, and the doctor ended up placing silicone tear duct plugs in each eye right there in the office chair. I didn't know they did it right there. She came back in the exam room with a tray, gloves and a needle and the instrument to place the plugs. I said "you're gonna put that needle where?" She actually put a needle into the tear duct to numb it and then placed the plug into the tiny tear duct in the right eye, and then the left eye. I WAS SCARED OUT OF MY MIND! I was at the appointment all by myself, and at that moment, I wished that Jim was there to hold my hand. I kept thinking, "what if she slips?" It went without any problems. She told me that if this didn't work, they would have to place a specially designed contact to cover the white part of my eye only to keep it moist, or to take the serum from my blood and use it as my own natural tears to keep my eyes lubricated, or the last resort is a cornea transplant if all else fails. For now, I am using my Restasis four times a day instead of two, artificial tears and gel tears during the day, as well as the eye ointment to lubricate my eyes while I sleep. I need to wear large sunglasses to keep the wind and sun out of my eyes and avoid breezes--stay away from fans and vents. It's scary stuff, and I'm not even sure that what's been done so far is helping.
I believe that being ahead of the game, knowing that a flare or anything else unexpected could be awaiting around any corner up ahead, is the only way to live my life. I keep a journal, and write everything in it about how I feel that day--pain, fatigue, and symptoms. I usually can see a pattern just before all hell breaks loose. I did notice that at first I was able to exercise 30 to 60 minutes 5 days a week with no problems except my normal pain issues. I began eating better and going to bed at a more reasonable time. So the exercise caused me to be more healthy in other aspects in my life, and in turn I felt more healthy, so I exercised even more. But then I began to slow down, I was able to notice the fatigue first in my journal, so I took it easy on the exercise, and I took some of it out for the week so that I wasn't overdoing it. Then I noticed that my sleep pattern got messed up again, which caused me to have more pain, and then which in turn made me begin to start eating at odd hours. It is a never-ending circle of events.
Hopefully, if we can get the scleritis and dry eye situation under control, I think that I am on my way out of this crisis though. Today, even on a methotrexate day, I played kickball, and yesterday was my aqua aerobics class. So I was able to do a couple days of exercise in a row, and I'm getting my blog post finished on time--well let's hope--for the blog carnival!
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