Have I fallen off the fine line? Most likely. Is it okay? We'll see. Always going to fall off the line. It's a matter of whether or not I am caught by a net or hit ground. :-)
My dear mother is with me for the week. I love her coming to see us and help. It's a bit hard to take that my 89 yr old mom can run circles around me. I am able to make cookies, candy, shop, go out socially, because she is here doing my grunt work. She does dishes. Laundry. Helps me remember and make menus.
Why Lord? Why has she had to help me out for the last sixteen years? We won't maybe ever know. But, I do know this. My mom needs to be needed, and especially since my dad passed away. She and I struggled with my not wanting her to do stuff around my house anymore.
She said to me one time: If I do something I want to do and I die doing it, Just know this. I DIED HAPPY! What a great outlook. She's ready to go HOME in some ways and yet she just wants to still enjoy life. This means being busy to her. I love you mom.
Saturday, December 18, 2010
Wednesday, December 15, 2010
Diagnosed with RSD/CRPS, what's next? Becoming Stable
By Stable, I mean, you are able to keep the pain level, swelling,
stiffness, mental issues at a level you can deal with on a day to day basis.
This stable point is your fine line. Then learn how to walk you're fine line to
stay stable.
I have been STABLE for many
years. This doesn't mean that I am ever totally without pain and can do
whatever I want. It means that for the most part, I know how to walk that line,
and if I "fall off," I know what I have to do to get back on that
line again.
It can take years to get
Stable. And in that time, you can keep an eye on the new treatments
offered, etc. that you may be willing to try. Now that I am stable, there
has not been anything in a long while I am willing to risk doing.
How to become stable you ask?
1) Drug Cocktail:
Take the time to work with your
doctors on developing a drug cocktail recipe that works for you.
Try the drugs he offers, only
adding new ones after you've been on the last addition for two or three
months. You should be able by that time to know if its helping or
not. If you see any change for the better in any of your RSDS symptoms,
and it's enough to make living better, stick with it, adjusting the dosing as
needed with your doctor's help.
2) Treatments; Blocks, PT, Aqua
Therapy (must be in 95 temp water),
Take note of EVERYTHING going
on in your body before during and after any new treatments. Give your
body time to adjust to whatever treatment you are trying before doing anything
new.
3) Cut WAY BACK on your
activities to get this thing under control, because doing too much can increase
your pain and symptoms!
4) Limit those activities and
situations that cause your pain to increase, and be severe in this limiting!
Any and all of the following
can increase our pain or decrease our ability to deal with the pain;
Stress, commotion (people
moving around, talking, laughing, etc), sights, sounds, vibration, movement
which touches our bodies such as air pressure, sea waves, wind, breezes,
stroking of our skin.
5) Learn how much of your day
that you can be active...for me that's only about from 5 or 6 PM till about
10pm. I CAN do a whole day of some activity occasionally, realizing that
I probably will need a couple days to recoup!
6) Think of the body as a very
sensitive, specifically adjusted tuning fork which can sense and regulate air
and internal temperature, air pressure, sound waves and adjust to keep the
status quo.
Now, think of the RSDS body as
a tuning fork that has been bent and it can no longer do all the
adjusting needed to handle the onslaught of all it is sensing. When
our bodies are hit with all of the above mentioned, it can not rebalance itself
so easily and it ends up causing us more pain.
Somewhere along the way you
will realize, hey, I can pretty much just take my meds and regulate my pain by
keeping the balance between doing too much and doing too little. By not
allowing my body to be overwhelmed by an onslaught to my nervous
system.
Which is as I call it, walking the fine
line.
Diagnosed with RSD/CRPS, what's next?
Let me say this much... I'm so very sorry that you've been diagnosed with RSDS. It's not like anything anyone of your friends or family have ever experienced! There is nothing that the docs can do for you that is guaranteed to help! Everything is on a trial and error basis.
You need to try the drugs the doctors offer and if you find ANY relief at all, put up with the side effects for a while to see if you can get used to them. Of course, there are some side effects that you don't put up with! Hives, extreme swelling, hallucinations, etc are symptoms you dont want to put up with and should quit the drug after calling your doctor. Never just stop taking a drug as the symptoms from abruptly dropping said drug can be worse than what you are experiencing on the drug. Call the dr. I tried a couple of sleep aid drugs. After taking one of the first one, I got hives. I didn't take any more of them! Then, I tried another one and I was hallucinating the first pill! I never took another one! If you have trouble with your breathing, call the doc. Start with one drug, add another one, maybe two months later, maybe wait longer to add another one.
I only change an Rxed drug if needed if it's been six months since the last time I've changed one. You also must see what if any side effects you are getting from your OTC meds. I have found that I have to be very careful with the Allergy/Sinus meds I am on.
You might get a series of nerve blocks. These are not to be looked upon as something that is optional. If you are going to a doctor who offers you blocks, you can be pretty well assured that this doc knows and understands how to treat RSD.
Blocks can be to RSD as Surgery or Chemo or Radiation is to Cancer. There were times when I wished I had Cancer. At least then there is usually a 'prescribed plan of attack' that most cancer docs know.
With RSDS, you have to first find a doc that understands. A PT (if needed) that understands. No Pain No Gain does NOT apply to RSDS! Except maybe in the case of young children who I've heard can be helped by pushing past the pain.
For those who don't go into remission, either spontaneously, or through blocks or Ketamine coma your goal should be to become STABLE.
If you can become stable, you can get the pain to the point where the pain meds can help control the pain. Then, you can start to walk the fine line!
You need to try the drugs the doctors offer and if you find ANY relief at all, put up with the side effects for a while to see if you can get used to them. Of course, there are some side effects that you don't put up with! Hives, extreme swelling, hallucinations, etc are symptoms you dont want to put up with and should quit the drug after calling your doctor. Never just stop taking a drug as the symptoms from abruptly dropping said drug can be worse than what you are experiencing on the drug. Call the dr. I tried a couple of sleep aid drugs. After taking one of the first one, I got hives. I didn't take any more of them! Then, I tried another one and I was hallucinating the first pill! I never took another one! If you have trouble with your breathing, call the doc. Start with one drug, add another one, maybe two months later, maybe wait longer to add another one.
I only change an Rxed drug if needed if it's been six months since the last time I've changed one. You also must see what if any side effects you are getting from your OTC meds. I have found that I have to be very careful with the Allergy/Sinus meds I am on.
You might get a series of nerve blocks. These are not to be looked upon as something that is optional. If you are going to a doctor who offers you blocks, you can be pretty well assured that this doc knows and understands how to treat RSD.
Blocks can be to RSD as Surgery or Chemo or Radiation is to Cancer. There were times when I wished I had Cancer. At least then there is usually a 'prescribed plan of attack' that most cancer docs know.
With RSDS, you have to first find a doc that understands. A PT (if needed) that understands. No Pain No Gain does NOT apply to RSDS! Except maybe in the case of young children who I've heard can be helped by pushing past the pain.
For those who don't go into remission, either spontaneously, or through blocks or Ketamine coma your goal should be to become STABLE.
If you can become stable, you can get the pain to the point where the pain meds can help control the pain. Then, you can start to walk the fine line!
What is RSDS really?
Please don't despair! You can learn to get your life back under control but it does take drastic measures.
You may go to the doctor because you are having an unusual amount of pain for the injury, surgery, trip, etc that you've experienced. You are told you have RSDS.
Do you realize that having RSDS is not just the pain in your limb? It's not as easy as simple addition of one pain drug to help control the pain. It's fine tuning, using drugs, different drugs for the different things going on in your body.
Having RSD means that your body is now out of tune...anything you do, everything you experience, the weather; barometric pressure changes, wind, cold, heat, stress, vibration (cars, planes, music, ) all have an effect on you and your pain and the other things going on in your body. Even eating takes a toll on your body! If I eat too much and my digestive tract has to work too hard, I can feel as if I have run a marathon! I can get flushed just with the effort of going to the bathroom!
Your mind is affected: insomnia, depression, you can't deal with commotion, with groups of people.
Motion Sickness!
I couldn't carry on a three way conversation and still have to be careful!
I would feel like I was getting Motion Sickness!! Looking back and forth between two people! Looking back and forth going down the grocery aisle! Looking both sides of the road when driving!!!
LIght! Our bodies have to adjust to LIGHT we are experiencing, so that can make our pain worse! I was in a vibrating car on a swaying bridge in bright sunlight with my husband and daughter talking, the radio on. I had to cover my head with a blanket so the sun wasn't an issue, have them stop talking, turn the radio off, all so I could also deal with the swaying of the bridge and the vibrating of the car! You see, all these things were adding to the stress on my body and was making me feel worse and worse. But, you see, the effect of these on my body were not limited to that time and place. I also knew that the effect would stay with me for a couple days after we got to our destination!
Take time to just think about the effects of everything in your life on your body.
The weather. FALL is an incredibly rough time for us because of the pressure changes, the wind blowing, and storms. There are ups and downs all the time.
Insomnia. It is not just because you are in pain...the RSDS actually causes the insomnia. You need to figure out what helps you to sleep.
I read some books that are fictional, easy reads just to get my mind off the pain.
I used to have a movie I enjoyed that I would watch every night. I knew it every line, every scene, and before long, it would help me fall asleep easier. BUT...never before say 1 or 2 in the morning. We have insomnia. Period. It's part of the RSD. You might try sleep aides. But, I found they didn't help much at all.
You have RSD. Yes, it's pain. But it's so much more than just the pain. You can no longer live the way you used to live.
When first inflicted with RSD, give up all extra activities, and yes, I mean everything you don't need to be doing. No cookie making at Christmas. No concerts. No shopping. No shoveling. No cooking even. I gave up all my crafts, all my activities. Do nothing but eating, sleeping, dressing, maybe going to Aqua Therapy, hot baths. etc.
You probably all know that once in pain, it's harder to get rid of the pain. So, you need to control the things that make the pain worse. The less you are doing that causes pain, the easier it is for the meds to get under the pain and help you. For me, the nerve blocks helped stop the pain long enough for the meds to help 'CONTROL' your pain. You may never be pain free, you need to learn to live WITH the pain. I do have days when I don't feel much pain at all.
Once you get the pain under control, you can toy with what else you can add back to your life. Its sorta like learning to walk on a balance beam that is only about six inches off the ground, moving it up higher and higher as you get better walking your fine line. THEN, you may make the beam narrower and narrower until you are walking the FINE LINE.
That all said...my fine line broke last week!! I have to take time fixing my fine line once again.
You may go to the doctor because you are having an unusual amount of pain for the injury, surgery, trip, etc that you've experienced. You are told you have RSDS.
Do you realize that having RSDS is not just the pain in your limb? It's not as easy as simple addition of one pain drug to help control the pain. It's fine tuning, using drugs, different drugs for the different things going on in your body.
Having RSD means that your body is now out of tune...anything you do, everything you experience, the weather; barometric pressure changes, wind, cold, heat, stress, vibration (cars, planes, music, ) all have an effect on you and your pain and the other things going on in your body. Even eating takes a toll on your body! If I eat too much and my digestive tract has to work too hard, I can feel as if I have run a marathon! I can get flushed just with the effort of going to the bathroom!
Your mind is affected: insomnia, depression, you can't deal with commotion, with groups of people.
Motion Sickness!
I couldn't carry on a three way conversation and still have to be careful!
I would feel like I was getting Motion Sickness!! Looking back and forth between two people! Looking back and forth going down the grocery aisle! Looking both sides of the road when driving!!!
LIght! Our bodies have to adjust to LIGHT we are experiencing, so that can make our pain worse! I was in a vibrating car on a swaying bridge in bright sunlight with my husband and daughter talking, the radio on. I had to cover my head with a blanket so the sun wasn't an issue, have them stop talking, turn the radio off, all so I could also deal with the swaying of the bridge and the vibrating of the car! You see, all these things were adding to the stress on my body and was making me feel worse and worse. But, you see, the effect of these on my body were not limited to that time and place. I also knew that the effect would stay with me for a couple days after we got to our destination!
Take time to just think about the effects of everything in your life on your body.
The weather. FALL is an incredibly rough time for us because of the pressure changes, the wind blowing, and storms. There are ups and downs all the time.
Insomnia. It is not just because you are in pain...the RSDS actually causes the insomnia. You need to figure out what helps you to sleep.
I read some books that are fictional, easy reads just to get my mind off the pain.
I used to have a movie I enjoyed that I would watch every night. I knew it every line, every scene, and before long, it would help me fall asleep easier. BUT...never before say 1 or 2 in the morning. We have insomnia. Period. It's part of the RSD. You might try sleep aides. But, I found they didn't help much at all.
You have RSD. Yes, it's pain. But it's so much more than just the pain. You can no longer live the way you used to live.
When first inflicted with RSD, give up all extra activities, and yes, I mean everything you don't need to be doing. No cookie making at Christmas. No concerts. No shopping. No shoveling. No cooking even. I gave up all my crafts, all my activities. Do nothing but eating, sleeping, dressing, maybe going to Aqua Therapy, hot baths. etc.
You probably all know that once in pain, it's harder to get rid of the pain. So, you need to control the things that make the pain worse. The less you are doing that causes pain, the easier it is for the meds to get under the pain and help you. For me, the nerve blocks helped stop the pain long enough for the meds to help 'CONTROL' your pain. You may never be pain free, you need to learn to live WITH the pain. I do have days when I don't feel much pain at all.
Once you get the pain under control, you can toy with what else you can add back to your life. Its sorta like learning to walk on a balance beam that is only about six inches off the ground, moving it up higher and higher as you get better walking your fine line. THEN, you may make the beam narrower and narrower until you are walking the FINE LINE.
That all said...my fine line broke last week!! I have to take time fixing my fine line once again.
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