Remission from RSD!

I never really got into this blogging because I kept falling off my tightrope!  Then, I got back on it and felt the Lord whisper deep inside me that he was going to be healing me!   Through a bible study I'd been doing and the companion video, I just really felt that was his word to me.   The next time I was in church, my communion with the Lord was so sweet.  I left that service proclaiming that I was in remission and as far as I can tell, I AM!

Since that time, I've been working on getting off the opiate I'd been on for over five years and before that it was a series of others.  The withdrawal period is awful for a few days and then very annoying for, well, two weeks so far.  I've read you can have symptoms called POWS (post opiate withdrawal syndrome) for months depending on amount taken and length of time taking them.  Well, I've been on opiates for at least 16 yrs maybe 17! 

I've had the RSD for 18 years. I have my ideas why the Lord allowed this in my life when he did and I also know that he has a reason for allowing me to be healed right now.    It could all be that it took me 16 years to finally come back to true fellowship with him and I've been on a coming home journey for the last 2 or 3 years!   It will always be a journey and I've got some work to do in the near future to get my body in shape and ready for whatever the Lord has in store for us! 

Memory

A nice thing about having no memory . . . I can experience things all over again that I'd seen or done since being sick. Such as. . . We just drove through an area that we lived in twenty years ago. Have been back since then but all the changes look new to me. Any books I read since getting RSD I can reread. If I can even remember that I read them once the ending is still a surprise!

Mom's Help

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.

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! 

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.  

Memories of Christmas' Past

Traditions

Why oh why did I push myself so much when my kids were little to make the 'perfect' celebration for them!?  I cringe when I think of all the lost time I didn't have to spend with my kids because I was soo soo busy making sure they had the 'perfect' Christmas with plenty of tradition! 
  One year, maybe the second one I had RSD, I thought...'There is no way I can do all the things I used to do for Christmas.  I got a brainstorm: ask each of our dear offspring and my husband what was their favorite tradition, cookie, baked good that makes Christmas Christmas for them.'  'Huh?'  That's the reaction I got from probably three out of the five!  So, I repeated myself, giving a little help.    Ok, I mean like, if you don't have cut out cookies, or russian tea balls, or choco chip cookies, you just won't be satisfied with Christmas! 
  Where oh where was my mind?  I was so wrapped up in the stuff of Christmas that I actually was worried that if I didn't make or bake each of their favorites, their Christmas would be ruined!!!!  
 TRADITIONS!!!  They can be wonderful and yet, they can ruin Christmas when seen through the twisted mind of a mother bent on making memories for her children. 
   Come along on my memory lane on my Christmases past and present.   

Gifts

Oh and gifts galore!!! I remember one Christmas when hubs and I were up till 5:30 wrapping the gifts only to get two hours of sleep before the first kid was awake.  ME!!! I couldn't wrap a single present for our children and hubby until Christmas Eve after they went to bed.  I had to lay them all out on the bed in piles, one for each person in the family.  For each of two years, we had a fourth child, a teenage girl.  I'd have a pile for her too.  Every present for one child had a 'corresponding' present for the others.  Pricewise, that is.  We(I) somehow made sure that the cost of said presents and the number of presents was the same for each and every child.  We've been known to switch some things around from child to child and just simply not give one or two if it was unbalanced somehow!! They each also got some clothes, underwear and socks.  Usually a pajama outfit also. They even had to get the same number of stocking stuffers, again, spending roughly the same for each.
   Hubby would be the one tracking the money most of the time.  He always wanted to include the taxes and I didn't want to cause it took too much of my budget up.

Stockings

One tradition that came out of the age old problem that everyone runs into I think.  There are those who just would rather sleep a while longer than get up and open their presents!  This was our family tradition on both sides, one we liked keeping.   Probably about the time my oldest was 16, we started a new tradition in our family.  Those (many years we had grandparents with us also on Christmas Morning) who were up and ready to descend those magically lit stairs before everyone else was ready; could run down and cut their stocking off the banister.  (no fireplace back then).  That gave you one peek at the massive pile of gifts under the tree.  Then you scampered back up the steps to open your stocking stuffers.  Some years my kids were more enthralled with their stocking gifts than anything big under the tree.  I used to, BRSD (before RSD, know how to choose great stocking stuffers.  I don't remember what I'd put in them, but after I was told that, I never quite met the mark again! 

Ornaments

Another tradition that I used to do was make an ornament for the teachers as a Christmas gift. I'd also make new ornaments for our every other year Theme Tree.  Our offspring didn't appreciate them much, but I did. I got bored with the same old ornaments each year! Just think of how many teachers etc this could entail in one year for three kids!!   There were three school teachers, but also the gifted teachers, three more.  Sunday school teachers...three,s ometimes more if there were helpers or co teachers.  Pioneer Boys and Girls leaders...two boys, one girl and there were usually two teachers in each group. Total for wednesday night...six.  Then the piano teacher, coaches, riding instructor...neighbors...friends.  EVERYONE absolutely HAD TO GET A GIFT!!!!

Baking/Candy

  I already mentioned my questioning of my semi grown children about their memories of what made Christmas for them when it came to the things I baked each year.   At one point in my madness, I was making Nestle's Choco chip (that's the only cookies my family ever had so it's a must for me! :) Russian Tea Balls (me again), Green Spritz Trees (for my hubby), Peanut Butter (again, hubs), more Nestle's Choc chip cause we'd have eaten all the rest before the week before Christmas! YES I froze them!!  Do you have any idea how wonderful Chocolate Chip cookies are frozen???? Almost my favorite way to eat them!  :)  Lets see, can't remember if there were any other cookies...I wasn't a cookie queen, left that to my MIL.  She could have won awards with her cut out cookies which were near perfection!  I found out her secret to perfectly baked cookies! She washed the pans each and every time they came out of the oven.  Oh of course she would take the cookies off first!
   I had to make mini loaves of banana bread, cranberry bread and pumpkin bread to give as gifts also and regular size to have Christmas Eve and through out the week after Christmas. I also made fudge.  For many years, I made Moravian Sugar Mints And towards the end, BRSD, I added Chocolate covered Pretzels which were undoubtedly everyone's favorite item from my kitchen! They were also the easiest, so I dropped all else in favor of the pretzels! 

   Christmas Trees

   I could go on and on about Christma Tree traditions but let me just say.  We have bought trees from every type of purveyor of Christmas trees.    We had a good thing going when the kids were little and BRSD.  We went out and hiked around fields of growing trees to find the perfect one to chop down!  It was a really fun family tradition that bit the dust the year after (A)RSD.  We moved soon after the onset of RSD.  That first Christmas in our new area we took the kids to one of those corner Christmas Tree Lots.  Our wonderful teens were enthralled!  You mean, you don't have to go walking around among live trees looking for the perfect tree?  This is cool! So, thus ended another tradition!
 

Triming the Tree

The thing about Christmas trees is that no one in our family actually LIKES decorating them!  When we had our first child, I told my husband that we were going to have a tradition in our house!  I was going to be in the kitchen baking cookies while Dad and children decorated the tree.  It was brilliant!! The house would smell heavenly with the scent of baking cookies and Christmas music in the air!  Well, it really is better to have these plans when the main person doing the work, dad, is on board. 

    A few years ARSD, to walk my fine line I realized I needed to get my family to help more with getting the house ready for Christmas. So, I said, I will not be decorating the tree. We purchased a tree, my hubby put the lights on the tree and NOT ONE OF MY FAMILY PUT ANY ORNAMENTS ON THAT TREE!! Guess they showed me that they weren't going for this bit of mom needing help!

  That's right, we didn't have any ornaments on the tree that year and we had another year like that.  The year we moved to PGH, our realtor and her boss brought us a Christmas Tree on Christmas Eve! What a lovely gesture since we had moved on the 10th and had decided no tree.  We never did decorate that tree either!

   

Christmas Morning

    I also remember a Christmas morning when my boys, probably ages 3 and 2, SLEPT IN on Christmas morn! The joke was on me!!! I was awake by their normal time to rise and yell BREFAST READY MOMMY? But, they were not up!! Hubs held me off from waking them up for half an hour and then I could stand it no longer! hahaha!!!!

Traditions!

   Traditions are wonderful! Don't get me wrong, I love Traditions!  However, to walk my fine line, I"ve learned that it didn't matter if I got everything done, if the tree was even decorated. It didn't matter if I hadn't slept for a couple of days...Christmas morning still rose and we sang Happy Birthday Jesus at breakfast over a coffee cake.  That's what made Christmas.  Our family tradition was to have a coffee cake (Entenmens) for everyone's birthday. So, it seemed natural to have one for Jesus too!  If I forget the coffee cake I feel like I've been gyped. Or rather, I've gyped the ONE who came to save my soul by giving His Life! 

Happy Birthday Jesus!