Hi all!
If have noticed in my last response to Coco about my feet pain, i have been struggling. I took my son out for his birthday last Saturday and that took abit out of me. Then Sunday i was so keen on houvering the house. Since i have been trying out my new light weight houver. I also helped my son with his school work (to make a rocket). I then had to arrange the flowers in my living room. At the end of Sunday i could barely walk my feet was in agony.
My last appointment with my consultant, we resolved that i need to come into hospital for a flolan infusion. My fingers are really sore. I had my last flolan in December 2017 but by January my finger started flaring up. My salivary glands are swollen and i have painful lumps in my scalp. So the plan is to get me into hospital for the treatment.
I really want and to get the flolan because i am increasingly incapable of helping myself. I dont want to be an inpatient. I have had the worse experiences as inpatient. Most time the nurses (especially those on night duty) have no clue of flolan. Sometimes i dnt get my night medication till midnight. I promised myself that my next infusion will be at the day unit. The infusion will be from 8am-4pm for 5 days. I have arranged hospital transport.
But since monday i have been so poorly. Unable to get out of bed. My fingers are on fire, i avoid going anywhere that will make me dress up. I contacted my consultant after a few correspondence via email during the week, he called me to say they need to get me a bed asap for my infusion. Since my planned appointment is till March 12th. He said i should come in on Monday morning and talk to his colleague because he will be on holiday and that i should pack a bag.
This may sound flimsy considering my present state of health. But i dnt want to be an inpatient for the following reasons: 1. My fingers are so bad that i need help with my personal care. My mum is my carer and she helps me. The nurses and health care assistant will not do it for me. First they will look at you as if ur lazy. I had the experience when a had my knee and ankle surgery. My fingers were bleeding and i didn't get a decent wash till my mum came to visit. 2. My son is on half term and i promised him we will go to the cinema and do things together. My mum may have to drive us everywhere and i will be very slow but i need them around me. 3. My son is 6 and he has Gp appointment, where we need to do some tests. Because he breaks out different skin rash regularly, he has asthma and he complains of his ear and constant pain in his left knee. I am worried he may also have an autoimmune disease. I am now keeping a log book to record the frequency of him being sick.
I know this text is long but this is the only place i can pour out what am going through. I have not used my crutches/stick in awhile and i felt good. I do have pain but i just kept going. I was diagnosed with a damaged catilage and am on a waiting list for a surgery. But since my present flare up, i have to use my crutches because my knee hurts even without me moving it. Just laying in bed, it hurts with every turn. I am hanging in here and manage till monday to see my Dr. Take care everyone and hope u have a better weekend than mine. God bless.
Regards
Ijeasike xxx
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