Koinonia: it has a comforting ring to it.
I am comforted.
My head: PMR temple pain and headache. TMJ causing jaw pain and earache. Fibro brain fog.My neck: Polymyalgia rhuematica pain (PMR) Hashimoto's disease.My skin: psoriasis and rash on shins from lymphedema of left legMy shoulders: fibromyalgia and PMR muscle pain. Lymphedema in my right arm (from the angiogram)My heart: angina, costrocondritis. Hole in the heart. Ongoing IHDMy blood: antiphospholilipid syndrome. (Sticky blood)My lungs: pulmonary hypertension. Only my left one working.My stomach: gastroparisis, GERD. Navel hernia repair done with mesh which is tearing away from fleshMy pancreas: failing due to diabetes 2My kidneys: stage 3 failing and dropping- currently 56 Makers of 50+ kidney stonesMy arms: muscle pain with tearing ligament pain.My hands: deformed from osteoarthritis. Trigger finger on left pointer finger.My back & hips: PMR, fibromyalgia, spinal canal stenosis, ankylosing spondylitis, Scheurrmanns disease. No lower discs left. CoccydyniaMy knees: lymphedema, ligaments torn and a fabella in the right knee. Arthritis.My legs: fluid from heart disease and lymphedema.My feet: arthritis, peripheral neuropathy from diabetes, heel spurs
Each day brings more pain. The level fluctuates, but it never goes. And I am still treated like a drug abuser when I ask for pain relief- and this is all verifiable by medical tests.
In fact, the only "help" I have gotten is through a pain management clinic where I was told to play Candy Crush to keep my mind off it. It is a joke.
At the end of the day
I
have a heart blockage between 2 stents that needs to be addressed. They botched my two angiograms- the entrance of my femoral artery and the entrance into my heart
was damaged, and the followup angiogram thrombosed my right radial artery which
has a very weak pulse and that was 18 years ago. So I refused the procedure.
I
have had stable angina recently and I know somethings going on there, but I am
trusting the LORD for keeping me alive. And if not, I will be with Him.
I
pray that Jesus comes for us sooner rather than later. I am ready..
I probably sound depressed but I am not. I am a realist though... and sometimes that comes across as defeatist. But we are more than conquerors. I remind myself of that often... Yet in all these things we are more than conquerors through Him who loved us. Romans 8:37
We’re
not depressed when we know where we’re going and Who is in control.
I
am petrified of another angiogram with lasting injuries... I got lymphedma in
the leg and arm they tinkered with... a painful lasting after effect still evident 18 years later.
Whether
He takes me now or raptures me, I know I will be with God. That's all that
really matters at the end of the day, isnt it?
© Glenys Robyn Hicks
Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.. 2 Corinthians 4:16
Another chance at life together
© Glenys Robyn Hicks
Because he hath set his love upon me, therefore will I deliver him: I will set him on high, because he hath known my name. He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honour him. With long life will I satisfy him, and shew him my salvation. -Psalm 91:14-16
It's all too much!
So recently I have had chest pain in angina and breathing problems coupled with what I thought was fatigue from an ongoing fibromyalgia flare.
My blood pressure sky rocketed, requiring a visit to a cardiologist who ordered an echocardiogram. My general practitioner told me if the results were bad, he would contact me. And he did.
I got the call last Friday telling me to make an appointment for a phone consult so I ended up speaking to the doctor on Monday. He told me I have heart failure due to Pulmonary Hypertension.
There is no cure for it but there are some treatments. I am already on blood thinners which I will stay on as PH can cause blood clots in the lungs. I already take 7 blood pressure tablets a day.
I often have felt dizzy and this is another symptom of PH and I feel like I can't get enough air in at times. The time will come when I will probably need oxygen at home.
Forget about exercise- I nearly collapse with exhaustion after walking up our long passage to answer the door.
I will know more tomorrow when I see the doctor in person. This is needful because he wants to check out the swelling in my feet, ankles and legs. I suspect I have fluid in my abdomen too. It hurts and is tight like a drum.
I had a blood test yesterday to check on my kidney function and this will be a regular thing.
Lately it's been one thing after another and I am a tad depressed. Prayers would be much appreciated. It's all too much!
I'm no longer a bunny!
More than a place to sleep
Giving the gift of time well spent
Here a little.
It's a pain!
So the day has started off without any appreciable spoons. However, I have purposed to do some chores in the house regardless. Simply because they have to be done.
With the last two days slack on housework, there are dishes and washing and some other chores that are shouting to be done.
My sugars are still 10.4 this morning in spite of taking the new diabetes medications for a week. So I accept that I am never going to feel really well. Fibromyalgia and angina coupled with back pain also seem to do that.
So today's list of to do's are:
- Soak and wash dishes and put away after air drying
- Catch up on the washing and put it away after the dryer has finished
- Cook some lamb stew in the slow cooker for dinner
We have gone mad!
The rheumatologist suggested to my daughter who suffers from fibromyalgia and pain post chemo, to use it as a distraction from the pain. She was one of these mind over matters kind of doctors. We were not very optimistic to be honest.
As a sufferer of not only fibromyalgia but ankylosing spondylitis, spinal canal stenosis coupled with bad arthitis and angina, I thought it may help me. It helps a little. But Tramadol would be better!
My doctor won't let me have them. Even though he knows I only take them as required for high pain days like today. He gave it to me when my second knee tore and it helped my fibro pain so much. Then he closed shop!
I know there have been many who abused pain-killers but when basic pain relief is available only with a chemist's approval such as Panadol with codeine, it makes life more difficult for the person like myself, to get any relief at all.
With fibro flaring and another episode of polymyalgia rheumatica, I have been tempted to take some of my Prednisolone, but I am worried about the side effects. I tell you truly, I am feeling desperate.
So even though you may see me playing Candy Crush or online a lot, I can honestly say that it's for medicinal purposes. I will be a Candy Crush addict any day if it will relieve the pain.
Just don't tell the do-gooders. If they think we are liable to become addicts, they'll make FB take it off their site! You fellow pain sufferers know they will. We have gone mad in our correctness!
Keeping dainty with chronic illness
I have been ill with fibromyalgia for about twenty years now. In that time, lots of things have changed, and one of them is my personal hygiene routine.
One would think that taking a bath or a shower would be an easy thing to accomplish, but if you suffer from chronic fatigue, fibromyalgia, back problems or angina problems like I do, you would realise that it consumes a lot of your spoons. So I had to do a bit of rethinking of my daily routines. I've discovered that one of the places that takes a lot of my spoons is the bathroom.
Because bathing and drying and dressing exhaust me, I varied my time in taking a bath depending on how well I feel. If I have enough energy, I would bathe in the morning, if not I would take a shower before bed as Chris is home and he helps me get dried and into my nightie. (When you are chronically ill, you quickly get over being humbled by needing assistance- you are grateful for any help available.)
I have found that if I take a bath or shower in the morning I am left with no energy for the rest of the day. If I take my shower at night, I have just enough energy afterwards to get myself to bed, which works out much better.
Hot baths or showers leave me too exhausted and give me angina pain, so I take showers with only warm or tepid water. While I would prefer to shower every day, showering is best done every other day for me to avoid flare-ups of pain, fatigue and soreness. I have decided on some new course of action to make time in my bathroom more fibro-friendly.
One of the first things I changed was how I take a shower, or rather, the position in which I shower: sitting. Here I find those telephone type showers are useful. When I get out of the shower, I sit down to dry off.
I can no longer blow dry my hair so by necessity my hairstyle has been wash and air dry for years now. Time in front of the sink brushing my teeth or washing my face has been modified by resting one foot on a stool while standing. Because of spinal problems and being a short person, I have a glass in my bathroom which I fill with water and use for rinsing and cleaning my toothbrush without straining to reach the tap.
I no longer wear makeup, the standing in front of the mirror and the use of my hands in holding the various tools of the task, is now limited to special occasions only; it is too painful a task to do on a daily basis. Also, my face is so sensitive that it breaks out in red welts at the slightest pressure... which includes smearing on foundation. This is called dermagraphia.
The bottom line is taking a shower is a real workout now. In addition to modifying how I take a shower, I am going to follow these 3 rules: I will only take a shower at night, I will only take warm water showers and I will only take a shower every other day. With the employment of a good deodorant after each shower and a fresh change of underwear each night and morning, I have found that I don't offend anyone and remain feminine and dainty.
Life with chronic illness is complicated, but at least I manage to stay clean while living it!
So teach [us] to number our days, that we may apply [our] hearts unto wisdom. Psalm 90:12
Oh no, no ho ho
I am not "normal"
Giving in is not giving up!
Twelve years old today
Making personal hygiene fibro-friendly
I have been ill with fibromyalgia for about twenty years now. In that time, lots of things have changed, and one of them is my personal hygiene routine.
One would think that taking a bath or a shower would be an easy thing to accomplish, but if you suffer from chronic fatigue, fibromyalgia, back problems or angina problems like I do, you would realise that it consumes a lot of your spoons. So I had to do a bit of rethinking of my daily routines. I've discovered that one of the places that takes a lot of my spoons is the bathroom.
Because bathing and drying and dressing exhaust me, I varied my time in taking a bath depending on how well I feel. If I have enough energy, I would bathe in the morning, if not I would take a shower before bed as Chris is home and he helps me get dried and into my nightie. (When you are chronically ill, you quickly get over being humbled by needing assistance- you are grateful for any help available.)
I have found that if I take a bath or shower in the morning I am left with no energy for the rest of the day. If I take my shower at night, I have just enough energy afterwards to get myself to bed, which works out much better.
Hot baths or showers leave me too exhausted and give me angina pain, so I take showers with only warm or tepid water. While I would prefer to shower every day, showering is best done every other day for me to avoid flare-ups of pain, fatigue and soreness. I have decided on some new course of action to make time in my bathroom more fibro-friendly.
One of the first things I changed was how I take a shower, or rather, the position in which I shower: sitting. Here I find those telephone type showers are useful. When I get out of the shower, I sit down to dry off.
I can no longer blow dry my hair so by necessity my hairstyle has been wash and air dry for years now. Time in front of the sink brushing my teeth or washing my face has been modified by resting one foot on a stool while standing. Because of spinal problems and being a short person, I have a glass in my bathroom which I fill with water and use for rinsing and cleaning my toothbrush without straining to reach the tap.
I no longer wear makeup, the standing in front of the mirror and the use of my hands in holding the various tools of the task, is now limited to special occasions only; it is too painful a task to do on a daily basis. Also, my face is so sensitive that it breaks out in red welts at the slightest pressure... which includes smearing on foundation. This is called dermagraphia.
The bottom line is taking a shower is a real workout now. In addition to modifying how I take a shower, I am going to follow these 3 rules: I will only take a shower at night, I will only take warm water showers and I will only take a shower every other day. With the employment of a good deodorant after each shower and a fresh change of underwear each night and morning, I have found that I don't offend anyone and remain feminine and dainty.
Life with chronic illness is complicated, but at least I manage to stay clean while living it!
So teach [us] to number our days, that we may apply [our] hearts unto wisdom. Psalm 90:12






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