Its been a few days since i've blogged as since i had a steroid injection i've been making hay while the sun shines as they say.
Let me begin at the start. On thursday i had ra clinic,wasn't feeling too bad when i went in. I was trying to get to see a specialist for my knee through the back door as you all know my gp won't refer me. Anyway the nurse told me that it was not possible to do it that way. So i'm back to square one on that subject. What did surprise me was my reaction to the news,i sobbed my heart out. Claire was lovely with me,she always is,its so hard to get a ra nurse who is good. The upshot of this tale of woe is that i had a steroid injection. Since then i have been manic to coin a phase. It made me feel well for a while. Since then i have started to put my decorations up with the help of my Grace,bless her she has put them on the ceiling for me,put lights on one of the trees and cooked a very nice sunday lunch. Friday and saturday i went to bedworth just to have a nosey around. Yesterday i had to go out in the wind as our seeds were ready to be picked up for next year on our allotment. Got home after doing that job in my dressed up scooter and sat down for a while. Then i got in our porch to tidy it up as our plants had to come in so i was trimming them and did a bit of repotting with some of the house plants. Then the rest of the afternoon i was putting up deccies. Hubby came home about 7.00pm from work and he was not feeling too good.
We bathed and i got in bed because by that time i knew i had overdone it. My right side ached so i knew that i might suffer a bit. So here i am at 5.00am writing to you all. I don't feel too bad in my head just the rest of me aches. I've got an ot appointment this morning at the hospital,so we'll see how that goes.
I wish that you all sleep better than i have and good morning to all when you read this.
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sylvi
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Good mornining sylv hope you went straight back to bed for some rest after blogging. So sorry you were upset at your appointment and I hope you keep pushing for a second opinion. Do not give up on that! Its good you managed to get things done around sylvi HQ. Hope you have agood day. Hugs xx
Morning treesha,i didn't go back to bed,but i did have a sleep down here. I have a recliner which is very comfortable. I will not give up trying to get a second opinion,i'm just going to bide my time and wait for the right oppourtunity. I am now coming to terms with my eyes,which is probally caused by the ra. I had my eyes cauterised in august and i have been discharged over them,but the right is still swollen and sore which i didn't know why. I asked if it could be the ra and the nurse said it could be. Now i know i will come to terms with it. I have an ot appt this morning for my hands and then when i get home i must write my xmas cards. This way i wil rest and then later i can put some more things on the xmas tree.
It very cold here in the midlands and i wonder how mch that has to do with my pain as well.
Luv sylvi. xx
Oh dear Sylvi, if I did half the stuff you do I would be completely wiped out! I realise that you're having a steroid 'bounce' but do take care of yourself.
I found that to learn to pace myself I had to take away any negative thoughts that I had around the 'pacing' word - such as 'being sensible' ! I think of it as conserving energy to do the things that I really want to do. Realistically, for me, this means that I can do one main thing in a day - this might be attending an appt, my afternoon clinic, going to the shops or coffee/lunch with a girlfriend.
If I'm having a day at home I might first walk the dogs then sit down for an hour, put some washing on then sit down to deal with e mails and the post, take clean washing upstairs and sort it then sit down and have some lunch. In the afternoon I would go to bed and read then sleep for 2 - 3 hours, then walk the dogs again, sit down and watch the evening news then get my dinner etc etc.
This would be on a 'good' day! on a 'bad' day I would walk the dogs for 15 minutes and that would be pretty much it. If I push myself on a 'bad' day the repercussions include more joint pain, pole-axing fatigue and a string of 'bad' days. House work will always be there, my energy won't! I have a cleaning lady who comes in once a week and does all the heavy cleaning - vacuuming, washing floors etc - and the things that I can't reach. She's worth her wait in gold but in reality is very affordable:-}
Ladies ,all i've done today is go to the hospital for a ot appt. Which went well,i've got a splint to wear during the day and i already have one that i've now got to wear at night as well. She was pleased with what i have managed to do to get round my problems. It still comes back to this pacing thing again, as you all know i'm not very good at pacing. I think i was quite good yesterday as i did do a bit of sitting down between jobs.
After hospital i went to nuneaton to meet hubby,he had to go to the doctors again. More pills for him,he had to drop grace of at a funeral as she was carrying the standard. Then we had a coffee and went to pick her up and we came home. Hubby had to go the bedworth to see optician and get his prescription and i went with him. I haven't done any deccies today.
I have had to be organised so that i can ease the load of my hubby. Not only that it makes me feel useful. I feel redundant as i am unable to do much round the house.
By the way my nails are now red and silver with glitter on them just thought it would make you al smile. xxxx
All ok in the end then?.. you must try work on pacing, or if you prefer the word "rest breaks", some things will always wait til tomorrow xx
I have been reading your blogs for 2 weeks now, have left a few (lengthy) comments as appropriate and have enjoyed your comments back.
I think I should give you some of my background information.
I've been diagnosed with Psoriatic Arthritis since 1985. At the time, it was mostly my spine. Have had 8 spine surgeries, with fusions with harvested bone and titanium rods and screws, from thoracic level 11 to the sacrum. Including a plate and screws in my neck at C3,4,5,6.
Sometime along the last 10 years, I also developed RA. Started at work in my feet. One day realized my shoe felt tight, took it off and couldn't get it back on and my feet were both red and very swollen. I worked in a hospital Laboratory, (I'm a Medical Technologist) so my co-workers got me to Emergency Room, I was admitted, got antibiotic IVs, in case it was a bone infection. Couldn't stand on my feet for almost a month, had crutches, but couldn't use them until I could put one foot on the floor. I crawled through the house. Anyways. Never could go back to work. Was on disability for 11 years, until I was retirement age, then I could draw my pension.
I had just bought a little house about 6 years previous, and the only way I could keep it was that I had taken a LongTerm Disability insurance out at work, which paid 70% of my gross pay. I survived OK, until August, 2004.
Had an insect bite (a spider, I think) on the back of my neck, from leaning back in my deck chair. I was on Remicade and was getting around very well, with minimal fatique. Well, the Remicade allowed the bacteria carried by the spider to cause Septicemia, or Sepsis. Blood infection, from which developed a kidney abscess the size of a silver dollar. I was in Intensive Care for 10 days, on 5 different IV antibiotics. Then had to go to Outpatient care every day for 4 more months, until the kidney abscess went away. Needless to say, my Rheumatologist has been reluctant to give me a Rx for any of the stronger, anti-tnfs. Until recently, I finally convinced him it has been 7 years since that episode and nothing more has happened, except the joint damage is progressing. So here I am, on Simponi, already tried Enbrel and Humira. Haven't had any more infections!
So, one of the antibiotics I was given was Gentamycin, or Garamycin. You have to have labs drawn every 3 days to check for "peak or trough" levels, meaning the highest and lowest values of the antibiotic, then they adjust the dosage. Well, I became extremely dizzy, with loud ringing in my ears, which is still there, and I had lost my sense of balance, plus my eyes cannot focus when I turn my head, or if I am in a car. Was sent to a Medical College hospital, Neurology Dept. and it was determined all the nerves in my inner ear have been burned out due to toxic levels of Gentamycin. Can no longer drive. For 7 years, I am dependant on someone to take me out, to the grocery store, pharmacy, Dr's office, hospital, where ever.
Going back through all this, since 1996, I have worked with the Arthritis Foundation, as a volunteer, leading an Arthritis/Fibromyalgia Education and Support Group. The AF sends me pamphlets discussing all the various types of Rheumatic diseases, which I take to the meetings for folks to take home. I arrange for a speaker from one of the specialties that treats RA and other diseases, for each meeting, once a month. We have OT, PT, Pharmacy, Podiatrist, Ophthamologist, Nutritionist, hand Specialist, Orthopedic Surgeons, etc.
I need to walk with a walker, not only because some nerves in my right leg were damaged by an episode of Spinal Stenosis, caused by the Psoriatic Arthritis
but also because I have no sense of balance, due to the nerves destroyed in my inner ear from Gentamycin.
Since April this year, I have been writing a column for the local newspaper, to further educate the public on the usually hidden aspects of so mnay of the Rheumatic diseases. Plus I make it the newsletter for the Support group, therefore encouraging others to come to the meetings, including the spouses and significant others. Men tend to not understand or tolerate what they cannot see!!
I wanted to explain all this because I suspected some of you would read my comments to your questions, and wonder who the devil does she think she is? Most of what I have commented on is relaying knowledge I have learned, in college, in the laboratory, from the Arthritis Foundation, or personal experience. Thanks for listening...well, reading Loret
Oh loret my friend you really have been through the mill haven't you. I have never judged anyone as i know too well what this disease does to us. You expertese is invaluable(excuse the spelling). You are an inspiration to us younger members.I'm proud to have you as a friend i can tell you. I had an ot appt yesterday and the weather here is rough and boy do i ache. Let me explain about the ot. It is called occupational therapy,don't know what you call in the usa. I had to have some therapy on my hands. As i'm in a flare up my hands are really sore. She has given me a splint to wear when i'm doing things.I have a resting splint for when i'm in bed and i haven't been wearing it for a long time and i didn't think about it helping me to be honest.
Well i haven't had a very good night,hubby has not been very well during the night and he came down in the early hours to sleep upright and i think he feels brighter today. I had a lot of pain,i over done it at the weekend, as i had a steroid injection last thursday when i was at the hospital. After the jab on friday/saturday i felt great and being stupid like i an i started to do things like putting up decorations. I really felt great and my mood was good as well. I still haven't finished, i think my family will have to finish it off which upset me greatly. I digress. The trouble with feeling great is i over do it,hence why i'm in pain,also the weather has changed and that doesn't help me at all.
Send me a message with your address so i can send you a xmas card. I feel priviledged to know you and i look forward to hearing from you more. I hope that you sleep well my friend.
Love sylvia. xx
Sylvia dear, You are so sweet. Thanks for the kind words.
You know, you are right on, or as you say "spot on" regarding your response to the steroids, they are great, I once had to take them about a year ago, on the second day-I was taking the pills-I was so wired, couldn't sleep, lay there thinking about repainting the kitchen! Immediately, now, at 2 am, not tomorrow I did talk myself out of that one!
tROUBLE WITH THOSE, IS IT GIVES SOME RELIEF, WHICH WE ALL PRAY FOR, BUT WHEN IT WEARS OFF, HERE YOU ARE AGAIN. sOMETIMES THE EFFECT CAN LAST FOR MONTHS Oh shoot, I just looked up and see I must have hit the caps lock key!!
Amyways, we all tend to overdo it when we feel better, then we pay. That is what pacing is for.
You don't have to do any less, just alternate busy, upright activities, with sit down ones, like read the mail, or newspaper, or work on any kind of handwork, like your cards, then after a half hour, go back to the upright, tasks.
That is the only way I get through a day. Living alone, I do it all, but on my time. Don't have to punch a time clock! I notice it takes me all day to do something I might have done in an hour! Well, maybe not that slowe, but slow.
I have kept a journal, with almost daily entries, for 41 years. I have 43 books, so I must have written alot on some days. It is so neat to go back, like 30 years ago and see what we did, like the Thanksgiving weekend.
I was working full time then, had had 2 back surgeries and returned to work, did all the Thanksgiving and Christmas dinner preps at night, while we played cards, or Monopoly, sipped a little wine, got silly, yet it all got done. The night beforre Tday, 30 years ago, I came home from work, ordered pizza for all the guys for supper, then made 3 pumpkin pies, one deep dish apple pie, and a mince meat pie., then made the toast for the dressing, cooked the celery and onions and sausage and went back to playing cards till 1:30 am. How on earth could I do all that? The drive was from the need to get it done, plus wanting to make things special for my family.
I have a splint for my right wrist for night time, but sometimes have to keep it on for a few days, off and on. I don't have a splint for daytime. Will have to ask our OT about that.
It's called Occupational Therapy here too.
You are also very right about the weather. We all say the same thing. Right now, we are under a severe winter storm warning, been raining for days. By 3-4:00 this afternoon, the cold front is moving in from the West, will meet with this huge stream of water coming all the way from the Gulf of Mexico, and turn it into snow! Very exciting weather reports!
Will rest your eyes for now, have a turkey carcus simmering on the stove, to make soup. Relax. Enjoy feeling good, while you read a book Love ya, Loret
Loret you are soo right. I haven't a good night,my hand has been causing me trouble all night,i put the night splint on and i took it off during the night and then i put it back on,at 3.00am i took some painkillers and slept until 6.30am,but i have to be up as i'm being picked up at 8.30am as i'm having my hair coloured today.
The soup sounds lovely,i can taste it over here in uk. The decorations are getting there now thank goodness,still got more to do.The outside isn't done yet,but they will get finished by the weekend.
Message me your address and then i can send you a card and a photo of my new hair.
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Most of what I have commented on is relaying knowledge I have learned, in college, in the laboratory, from the Arthritis Foundation, or personal experience. Thanks for listening...well, reading 
Struggling with it all
Here I am again ! 
Rheumatology today 
