Time... Can be so frustrating.
It is time to sleep and I can't.
It is time to give my hubby a kiss before heading to work.
It is time to be awake, but I just wish I could fall back asleep.
It is time for a bath. I stink.
It is time that my birds are eating in the morning light.
It is time that I occupy my mind.
It is time that I choose I am going to have a good day no matter what.
It is time that I choose to do all that I can today.
It is time that I am thankful I could write out the bills and we had money to pay.
It is time that I think of everyone else.
It is time to be thankful that someone is taking time out to come see me today!
Time can be wicked, Time can be kind..
My bath was a success! I am feeling pretty darn good. I still hurt. Not where the RFL was but all of the other places. I still am having a hard time sitting up for long, but I am doing well! I am pleased that is for sure.
I have no intention of over doing it. I am going to do as much as I can. I am clean! I am thrilled with that! I did it on my own! I am thrilled with that! I am not dizzy this morning which was a huge relief. I have done my Cleanse as usual first thing this morning. I ate my bar. I just drank the first dose of Ionix with my Vitamin B's.. The day is going well!
I am resting now, I am dressed and I have my Green Refining Mask on my face so I will have clear skin for the day. I am tired but I am happy for how well my morning has already gone. It is not even 9am yet. Yeeks!
Well, I did fall back to sleep and woke just in time. My friend was in the driveway. But I was a wreck. I felt awful, I am sure I was a sight. Oh well, at least I was clean!
It was nice to have her pop by for a bit. She did not stay long and I am going to rest some more. I think I will be taking it easy.
I had hopes for more but maybe if I rest now I can do some dishes later. That would be cool!
Today for me time is a bit wicked.
Blessings,
Pink Doberman
Friday, July 2, 2010
Thursday, July 1, 2010
FiNgErS CrOsSeD..
So today has been good. I am up and about a bit more. I go back to the Dr. in a couple of weeks. I have a few things to discuss with him, several questions. The procedure itself I think at least at this point went fine. But I am hoping that there is more that can be done, as I am still having some issues.
This time was different than the previous that is for sure. I am not minding, I just need the Doctor to evaluate some things with me. Right now I am ready to go get more of this done. I hope he will agree to that. Who knows it may be in two weeks I will feel differently.
I do know that I am stir crazy. Crazy may be the way to more aptly describe how I am feeling. I really have been home alone allot. Jason is working his heart out, and when he has not been at work he has been volunteering, and learning. So life is pretty busy for him these days.
I am however looking forward to some visitors here again soon! I have a girlfriend popping by tomorrow! I am thrilled! Besides that she is bringing me some goodies that I need. Even better! Another friend is camping nearby as well he has brought his daughter to camp! I hope Jason will be able to hook up and hang out with him!
I am sure more people will be by as well. It tis the season. Nice Nebraska weather means that people will be out traveling about. I hope to get to see my friend who's had back surgery as well. She has been getting out and about a bit. So I've been reading about her adventures as well.
Tomorrow my main goal is to get a shower before everyone arrives. I think it should go smoothly. I hope so at least. Otherwise it could get a little embarrassing. It will be my first shower on my own in along time.
Have I mentioned I've been feeling crazy.. Well I have. I want to go outside and do something! I want to go anywhere and do something. I've been organizing dirty dishes on the counter top. (yes our house is a bit disheveled.) Bending is still not my strong suit, and I get so dang tired. So house cleaning has been put on the huge list of things needing done around here.
One nifty thing, is right now I am growing a full set of nails on both of my hands. I think between the 50,000 units of calcium I am taking every other day and not doing a darn thing that I am having some nice looking finger nails. Too bad I have no desire to paint them. (oh, and I am not kidding about the amount of calcium I take.. it is obscene. ) I need to get back on my horse about the vitamin B too.. I've been slacking...
I am sure I will feel better once I get those vitamins pumping through my system. I've just been taking the regular doses in my shakes and bars as of late.. I really haven't been doing much extra. With the Vitamin B.. I am jumping back on tomorrow. I usually am feeling happier when I have more of my Ionix..
Tonight was nice. Jason spooned with me for a while. I LOVE THAT. He even gave tried to give me a massage... That was not successful.
I haven't mentioned that I can no longer see my massage therapist any longer. But I can't. I haven't had an appointment for weeks. I can sure feel that I have not as well. I hurt hurt hurt. I have been hurting. He could usually work out the places that would get so bad. However, since I have no longer been able to continue with massage therapy, my body just keeps getting worse. The only thing that has helped so far is laying flat and icing. So for weeks now that is what I have been doing.
No offense to my amazing husband. He knows this as well... his massages do nothing to help the pain.
I can't go any more because of finances. I wish it were different. I hope there is help for me out there somewhere. I had been planning on the settlement with the insurance company of the 90 year old man covering my medical bills.. But it is looking as if that is not going to be the case at all. He even got a ticket in the accident.
It still remains to be seen, but in all good consciousness when I found out that it was likely that my bills were not going to be covered, I needed to stop anything I could. Insurance, at least mine, does not cover massage therapy.
We are hoping that those who have been so generous to treat me during this period will at least be paid. All I can say is the way the system works for those who are injured really stinks. The system totally favors the insurance companies.
I'd like to say a whole lot else as well. But I won't for now. It is all a big mess, it is still getting sorted out. I feel so guilty for not healing like everyone else. I feel guilty for not being able to do J**K S**T.. I sit here day after day and look out my windows, thinking of things I can do to get myself better.
I try doing all that I can do. I work so hard at things I make myself worse. Which frustrates me beyond all sorts of reason. I hate being broken. I hate it.
To top it off everything that is wrong with me is invisible! Which becomes so frustrating to explain to someone who looks at me. I don't look broken. I look so much better than most thirty throughs..
The thing that is most frustrating is that I look the best I have ever looked in my life, (at least as far as what society considers looking good) and I feel the absolute worst physical pain I have ever felt in my life. I am a contradiction. I am so frustrated. I am happy that I look nice don't get me wrong. I am grateful.
I guess at least when I am able to get out and about, my husband will have some arm candy. (Although I swore that is something I never wanted to be!)
Life has a way of making sick jokes at my expense. I am really working hard to say Never! As soon as I say it it seems to happen.
Oh well, at least things are green outside my windows. The birds are healthy. I swear I will start posting pictures soon. But right now my computer keeps locking up and I can't get that stuff done.
Hopefully this will be resolved soon with the addition of more RAM. Yes I figured this out on my own. I don't know if it will help, but I am giving it a shot. I even have looked up how to do it on my own! ( If I am not strong enough to snap it in, I will wait for Jason to do it. )
I am turning one day at a time into a techie geek. I guess since I have already had my Amateur Radio License for years now that I already was one.. Ha! Although no one has ever gotten a QSL card from me in their mail box. Maybe I should remedy that..?
I did make Jason a pretty schnazzy one the other day! I was pretty proud of it. Maybe that is the sort of thing I could do? I wish there was more of a market for it... =)
At any rate. I am moving around more. I am trying to do more. So we will see! Fingers crossed that this is all that I need!
Blessings,
Pink Doberman
This time was different than the previous that is for sure. I am not minding, I just need the Doctor to evaluate some things with me. Right now I am ready to go get more of this done. I hope he will agree to that. Who knows it may be in two weeks I will feel differently.
I do know that I am stir crazy. Crazy may be the way to more aptly describe how I am feeling. I really have been home alone allot. Jason is working his heart out, and when he has not been at work he has been volunteering, and learning. So life is pretty busy for him these days.
I am however looking forward to some visitors here again soon! I have a girlfriend popping by tomorrow! I am thrilled! Besides that she is bringing me some goodies that I need. Even better! Another friend is camping nearby as well he has brought his daughter to camp! I hope Jason will be able to hook up and hang out with him!
I am sure more people will be by as well. It tis the season. Nice Nebraska weather means that people will be out traveling about. I hope to get to see my friend who's had back surgery as well. She has been getting out and about a bit. So I've been reading about her adventures as well.
Tomorrow my main goal is to get a shower before everyone arrives. I think it should go smoothly. I hope so at least. Otherwise it could get a little embarrassing. It will be my first shower on my own in along time.
Have I mentioned I've been feeling crazy.. Well I have. I want to go outside and do something! I want to go anywhere and do something. I've been organizing dirty dishes on the counter top. (yes our house is a bit disheveled.) Bending is still not my strong suit, and I get so dang tired. So house cleaning has been put on the huge list of things needing done around here.
One nifty thing, is right now I am growing a full set of nails on both of my hands. I think between the 50,000 units of calcium I am taking every other day and not doing a darn thing that I am having some nice looking finger nails. Too bad I have no desire to paint them. (oh, and I am not kidding about the amount of calcium I take.. it is obscene. ) I need to get back on my horse about the vitamin B too.. I've been slacking...
I am sure I will feel better once I get those vitamins pumping through my system. I've just been taking the regular doses in my shakes and bars as of late.. I really haven't been doing much extra. With the Vitamin B.. I am jumping back on tomorrow. I usually am feeling happier when I have more of my Ionix..
Tonight was nice. Jason spooned with me for a while. I LOVE THAT. He even gave tried to give me a massage... That was not successful.
I haven't mentioned that I can no longer see my massage therapist any longer. But I can't. I haven't had an appointment for weeks. I can sure feel that I have not as well. I hurt hurt hurt. I have been hurting. He could usually work out the places that would get so bad. However, since I have no longer been able to continue with massage therapy, my body just keeps getting worse. The only thing that has helped so far is laying flat and icing. So for weeks now that is what I have been doing.
No offense to my amazing husband. He knows this as well... his massages do nothing to help the pain.
I can't go any more because of finances. I wish it were different. I hope there is help for me out there somewhere. I had been planning on the settlement with the insurance company of the 90 year old man covering my medical bills.. But it is looking as if that is not going to be the case at all. He even got a ticket in the accident.
It still remains to be seen, but in all good consciousness when I found out that it was likely that my bills were not going to be covered, I needed to stop anything I could. Insurance, at least mine, does not cover massage therapy.
We are hoping that those who have been so generous to treat me during this period will at least be paid. All I can say is the way the system works for those who are injured really stinks. The system totally favors the insurance companies.
I'd like to say a whole lot else as well. But I won't for now. It is all a big mess, it is still getting sorted out. I feel so guilty for not healing like everyone else. I feel guilty for not being able to do J**K S**T.. I sit here day after day and look out my windows, thinking of things I can do to get myself better.
I try doing all that I can do. I work so hard at things I make myself worse. Which frustrates me beyond all sorts of reason. I hate being broken. I hate it.
To top it off everything that is wrong with me is invisible! Which becomes so frustrating to explain to someone who looks at me. I don't look broken. I look so much better than most thirty throughs..
The thing that is most frustrating is that I look the best I have ever looked in my life, (at least as far as what society considers looking good) and I feel the absolute worst physical pain I have ever felt in my life. I am a contradiction. I am so frustrated. I am happy that I look nice don't get me wrong. I am grateful.
I guess at least when I am able to get out and about, my husband will have some arm candy. (Although I swore that is something I never wanted to be!)
Life has a way of making sick jokes at my expense. I am really working hard to say Never! As soon as I say it it seems to happen.
Oh well, at least things are green outside my windows. The birds are healthy. I swear I will start posting pictures soon. But right now my computer keeps locking up and I can't get that stuff done.
Hopefully this will be resolved soon with the addition of more RAM. Yes I figured this out on my own. I don't know if it will help, but I am giving it a shot. I even have looked up how to do it on my own! ( If I am not strong enough to snap it in, I will wait for Jason to do it. )
I am turning one day at a time into a techie geek. I guess since I have already had my Amateur Radio License for years now that I already was one.. Ha! Although no one has ever gotten a QSL card from me in their mail box. Maybe I should remedy that..?
I did make Jason a pretty schnazzy one the other day! I was pretty proud of it. Maybe that is the sort of thing I could do? I wish there was more of a market for it... =)
At any rate. I am moving around more. I am trying to do more. So we will see! Fingers crossed that this is all that I need!
Blessings,
Pink Doberman
Wednesday, June 30, 2010
ThE BeSt Me I cAn Be..
So I have been thoroughly scouring the internet for information about Ehlers Danlos Syndrome and the people who have it. I am meeting some new people.
Learning about things I have been dealing with my whole life but no one would believe or acknowledge.
You know when you tell people what is going on and they don't believe you. Or they don't know enough to listen and search, or they tell you that it is just something you will get used to. Well. You stop telling people.
You stop trying to find someone who will listen.
So I did.
But now. Knowing that I've never been "crazy" That the things I have been going through my whole life are connected, and are things that while I might not like what they all mean together, I have a name for it and I have others I can find information from.
I never really thought of myself as being associated with a specific medical condition. I mean I've always had the "blonde" condition.. I have had the "girl" condition. I chose to have the "pink" condition. Ha Ha!!
All of these things come with being treated a certain way. So does having a disability.
While the "Blonde, Girl" comes with good and bad. Growing up I pretty much got the Bad of it. I didn't know how to turn it into Good. But I do now. It took me years. Thanks Mary Kay!
I think part of it has to do with age as well. But learning that I have value that was not based on what others thought was a big turning point.
No one wants to live a life of labels. I would never want mine defined by them. I want to choose the labels that I believe are worth being labeled by.
Smart
Fun
Interesting
Capable
Friend
Honest
Caring
You get the picture.
Ehlers Danlos is something that I am for sure going to deal with. It may even speak to who I am for a while. I have to learn about it and decide what is going to be best for my life.
I want to be my best feel my best and do my best not only for myself but for my husband and girls. Don't you? What would it take for you to do what is best for you? Best for your family?
I am going to continue changing and fixing things one thing at a time. Just like I have always done.
I have a plan. It is not perfect. I am doing what I can do each day and I am going to continue being the best me I can be.
Blessings,
Pink Doberman
Learning about things I have been dealing with my whole life but no one would believe or acknowledge.
You know when you tell people what is going on and they don't believe you. Or they don't know enough to listen and search, or they tell you that it is just something you will get used to. Well. You stop telling people.
You stop trying to find someone who will listen.
So I did.
But now. Knowing that I've never been "crazy" That the things I have been going through my whole life are connected, and are things that while I might not like what they all mean together, I have a name for it and I have others I can find information from.
I never really thought of myself as being associated with a specific medical condition. I mean I've always had the "blonde" condition.. I have had the "girl" condition. I chose to have the "pink" condition. Ha Ha!!
All of these things come with being treated a certain way. So does having a disability.
While the "Blonde, Girl" comes with good and bad. Growing up I pretty much got the Bad of it. I didn't know how to turn it into Good. But I do now. It took me years. Thanks Mary Kay!
I think part of it has to do with age as well. But learning that I have value that was not based on what others thought was a big turning point.
No one wants to live a life of labels. I would never want mine defined by them. I want to choose the labels that I believe are worth being labeled by.
Smart
Fun
Interesting
Capable
Friend
Honest
Caring
You get the picture.
Ehlers Danlos is something that I am for sure going to deal with. It may even speak to who I am for a while. I have to learn about it and decide what is going to be best for my life.
I want to be my best feel my best and do my best not only for myself but for my husband and girls. Don't you? What would it take for you to do what is best for you? Best for your family?
I am going to continue changing and fixing things one thing at a time. Just like I have always done.
I have a plan. It is not perfect. I am doing what I can do each day and I am going to continue being the best me I can be.
Blessings,
Pink Doberman
Tuesday, June 29, 2010
A pReTtY GrEaT DaY!
I've started to feel better. It has been many days now and I am starting to feel better. I hope I can start to do more. I have a sinking feeling that I need another set.. but fingers crossed this will do the trick for a while.
Today was nice though.. I did a couple things around the house finally.. Not much but something. I got a package ready to mail.. I hope to have more to mail soon too!
I also had a surprise visitor, which was super. My surprise visitor went to the store and filled my fridge with all sorts of goodies! Which was super, because Jason just hadn't had the energy/time to get it all done. I now have some more cherries and grapes and pickles.. other things too..
It was also nice to have a visitor. Since Jason is pretty busy these days, it was nice to have someone to break up the monotony of the day.
So while I am writing this sitting up still in bed.. but sitting up. I am happy. Luka is curled up here and we are watching Home Makeover. I love watching dreams come true.
Today was a pretty great day! Hope yours was too!
Blessings,
Tonja
Today was nice though.. I did a couple things around the house finally.. Not much but something. I got a package ready to mail.. I hope to have more to mail soon too!
I also had a surprise visitor, which was super. My surprise visitor went to the store and filled my fridge with all sorts of goodies! Which was super, because Jason just hadn't had the energy/time to get it all done. I now have some more cherries and grapes and pickles.. other things too..
It was also nice to have a visitor. Since Jason is pretty busy these days, it was nice to have someone to break up the monotony of the day.
So while I am writing this sitting up still in bed.. but sitting up. I am happy. Luka is curled up here and we are watching Home Makeover. I love watching dreams come true.
Today was a pretty great day! Hope yours was too!
Blessings,
Tonja
Monday, June 28, 2010
ChEeSe PLeeSe!
Today has been a good day. For the day following my injections. I have mostly slept. I have eaten, fed Luka, taken Luka outside a couple of times. Slept some more. Caught up on my Facebook activities, watched a Netflix movie. "Freedom Writers" with Hillary Swank. It was really good. So good I cried.
Took my pain meds, but am weaning myself off of them already. Iced allot, still doing that, I am still rather puffy on the back of my neck. Called to try and change a Dr. appointment so I could go out of town to see friends to no avail. Specialists. You've got to see them when they want to be seen. Which in my case is only on Wednesdays. Which stinks because that falls in the MIDDLE of EVERYTHING! At least it does right now.
And I'd really like to leave and go somewhere else right now. I am sick of my walls.
Looks like it is going to be a long time before that happens for me.
Feeling sad for myself, but also know that I will be alright.
I must be a really warm person as of late as I am going through Ice Packs Like I am the sun. Weird!
Oh, and Luka seems to have developed a bit of a farting issue. Which is lovely as his rear is facing me right now. Ugg.
I've got a stash of Gluten Free Pizza from Sam and Louie's pizzeria that Jason got for me before he left. He's going to be gone allot so he stocked me up on easy things to fix and eat. I plan on eating GF Pizza, Isashakes, and Isa Bars. Not to bad considering.
I might also eat some cheese. Have I mentioned I love cheese! I do. I love it allot! I like the hard white cheeses, the pungent kind, the kind that have bite, and flavor. The older the better, the kind of cheese that you get in the special cheese section, not the dairy case.
I like goat cheese, Parmesan cheese, Gouda, Swiss, Sharp Sharp Cheddar, Asiago, Parmigino Regiano, Well the list can go on and on and considering that is all of the cheese names I can remember at the moment, I will stop there. But suffice it to say I am a cheese whore. I like eating it with grapes, cherries, apples, avocados, chips, plain, really I just like eating cheese. I like to also eat fruit.
I am now hungry, I wonder if there are any cherries left to go with my cheese? Cheese pieces can be eaten while lying flat on my back! So that is an additional bonus to my favorite food! MMMMmmmMmmMmm!
Blessings,
Pink Doberman
Took my pain meds, but am weaning myself off of them already. Iced allot, still doing that, I am still rather puffy on the back of my neck. Called to try and change a Dr. appointment so I could go out of town to see friends to no avail. Specialists. You've got to see them when they want to be seen. Which in my case is only on Wednesdays. Which stinks because that falls in the MIDDLE of EVERYTHING! At least it does right now.
And I'd really like to leave and go somewhere else right now. I am sick of my walls.
Looks like it is going to be a long time before that happens for me.
Feeling sad for myself, but also know that I will be alright.
I must be a really warm person as of late as I am going through Ice Packs Like I am the sun. Weird!
Oh, and Luka seems to have developed a bit of a farting issue. Which is lovely as his rear is facing me right now. Ugg.
I've got a stash of Gluten Free Pizza from Sam and Louie's pizzeria that Jason got for me before he left. He's going to be gone allot so he stocked me up on easy things to fix and eat. I plan on eating GF Pizza, Isashakes, and Isa Bars. Not to bad considering.
I might also eat some cheese. Have I mentioned I love cheese! I do. I love it allot! I like the hard white cheeses, the pungent kind, the kind that have bite, and flavor. The older the better, the kind of cheese that you get in the special cheese section, not the dairy case.
I like goat cheese, Parmesan cheese, Gouda, Swiss, Sharp Sharp Cheddar, Asiago, Parmigino Regiano, Well the list can go on and on and considering that is all of the cheese names I can remember at the moment, I will stop there. But suffice it to say I am a cheese whore. I like eating it with grapes, cherries, apples, avocados, chips, plain, really I just like eating cheese. I like to also eat fruit.
I am now hungry, I wonder if there are any cherries left to go with my cheese? Cheese pieces can be eaten while lying flat on my back! So that is an additional bonus to my favorite food! MMMMmmmMmmMmm!
Blessings,
Pink Doberman
Sunday, June 27, 2010
dOiNg SoMeThiNG..
I've been avoiding all of the crafty blogs as of late. I have also been avoiding my craft room like the plague. It depresses me. But I am having some hope.. Maybe I can start doing some sewing or something again. I really want to.
I just started perusing the list of craft/sewing/making things blogs. Who knows. I sure Have a list of things I need to finish around here.
What are you making? At this point today, I'd be thrilled to make Jason a great meal. I think he'd like that! I told him the other day that I would love to be someone's personal chef. I think I'd be good at that. Well, if I could physically manage it of course. The only problem I foresee with a job like this is I would want to create all of the menu's.. Hmmmm.. I don't think life works that way!
I am dreaming again. I like to dream. Do you?
I am dreaming that I have a garden planted. I am not sure if that is going to happen this year or not. At this point I haven't been able to plant it. I don't know that Jason is going to be able to get it done either.
Well I guess that is how life works. You never know what is or isn't going to be around the corner.
But dreaming makes things seem more possible. Keep your fingers crossed that I can start crafting cooking and driving soon! Woot! I have mine crossed!
Blessings,
Pink Doberman
I just started perusing the list of craft/sewing/making things blogs. Who knows. I sure Have a list of things I need to finish around here.
What are you making? At this point today, I'd be thrilled to make Jason a great meal. I think he'd like that! I told him the other day that I would love to be someone's personal chef. I think I'd be good at that. Well, if I could physically manage it of course. The only problem I foresee with a job like this is I would want to create all of the menu's.. Hmmmm.. I don't think life works that way!
I am dreaming again. I like to dream. Do you?
I am dreaming that I have a garden planted. I am not sure if that is going to happen this year or not. At this point I haven't been able to plant it. I don't know that Jason is going to be able to get it done either.
Well I guess that is how life works. You never know what is or isn't going to be around the corner.
But dreaming makes things seem more possible. Keep your fingers crossed that I can start crafting cooking and driving soon! Woot! I have mine crossed!
Blessings,
Pink Doberman
Saturday, June 26, 2010
RaDiO FrEqUeNCy AbLaTiOn PrOcEdUre DaY
Hopefully this won't make you queezy.
So the Radio Frequency Lesioning/Ablation procedure was today. Yuck! I mean, happy to have it done for sure.
This proved to be the worst one I have gone through yet. The procedure itself went well I think, time will tell. He put the needles in a different spot than he had previously, which caused me some intense horrible pain that I could not believe. It was a radiating burning sensation that was horrible intense and unbelievable. You wouldn't believe the pain if I could adequately describe it to you.
It did not help I kinda freaked out before the actual procedure. I had an uncomfortable situation with a nurse. She put my IV in or tried to put my IV in my right hand while sitting on the complete left side of my body, so I had to stretch my right arm to my left side and keep my face turned the opposite direction.
For those who follow this, it may be no surprise that this was not the best position to put my body in. I did manage, until she started telling me to Not MOVE Hold Still, and getting a bit more cranky... For starters, I HATE IV's! I REALLY REALLY HATE getting them in my hands!
My hands hurt anyway, and this is not the best place to find a good vein on me. She started, the more she poked around in there the squirmier I got. The more she told me to not move the more upset I got, (thank you PTSD ) Jason stepped in after my vein blew.
Ugg.. she then proceeded to get a clue.. my bed was moved, I was moved, and she did it the right way and she put it in the inside of the elbow. That is where I have the best luck getting IV's put in. I give the nurses two tries and then they have to go get someone else. I really am not that difficult, I have good veins..
So I already had tensed up muscles in my neck by the time I got to the surgical room. Oh the joys. It hurts more when I am tense than when I am relaxed. But it was over sooner rather than later. I think I only got three injections instead of 5 so that made it go faster. They do give you a sedative type thing, that relaxes you. But they need/want you to feel where the needles are placed so they can confirm that they get the correct spots. Which is not fun. They also take pictures of the procedure. Which is kinda cool, if you want to see needles sticking into your spine..
I got the injections they gave me a topical pain killer, and then after the ablation was over they gave me a longer lasting pain injection.. ( that is the one I really think did NOTHING for me) I don't know if it was different than before or the same. But I do know it provided no relief. The only thing I could think to do once I left that table was to get home and get my medication. ( I had forgotten my oral medication at home, which was horrible! )
I was practically falling out of the room to get out of there. I knew I was in trouble, and the fastest relief I could get was to get home quick. I was begging Jason to get me out of there! Which he went to work to do. Tracking down the nurses to get things going.. I hurt and it was only getting worse. My Ehlers Danlos Diagnosis is fairly new and Dr. M and I really did not discuss it allot. So he is not completely up to speed with it all. Besides he is not that kind of Dr..
We will discuss it more in a couple of weeks have no doubt. I am not going through another one of those with that same medication. I am also not going to forget my meds that I know work for me.
Oh my!
To top it off, our ride home was in our Jeep, that I love, but is not suitable for carrying a sensitive patient who feels every little bump. It was a horrible horrendous long ride home. I was unconsolable and the pain just kept escalating with every bump. I even had an ice pack but those really do not stay cold very long. Jason got put through is paces today.
We got home he carried me in to the house and put me in bed. THANK YOU ISAGENIX for helping me to loose weight.
So I have learned some lessons.
1. Do not get stressed out beforehand.
2. Bring my medication with me.
3. Get a hotel room near the procedure or plan a stay with a friend so there is not a long bumpy ride.
4. Bring lots of soft icepaks
5. As I can not eat prior, bring something to eat afterward.
Yes, we could have driven the car that dad is letting us borrow. However it still has no air, and when Jason drove it this week down the block to an appointment, he had to jump start it to get home.
Needless to say until that problem is fixed I am not to get in the car and go anywhere in it either, and Jason smartly avoided driving it although the ride is smoother, the last thing I needed was to sit out in the car in the heat, and wait for it to get a jump.
We made it home he got me in bed, and got me my medication. He snuggled up consoling me for hours until the medication made a dent in the pain. I don't think I would have made it through it if it had not been for his snuggling and niceness efforts. I was in Hades!
My friends and family were praying, Jason was hanging on and I was just trying to keep my sanity in this process. Trying not to move trying to keep packs and packs of ice around my neck head and back. Trying to not scream in Jason's ear and trying to stay as still as possible.
The meds started working and several hours later I was on the road to recovery. I am currently iced up, medicated, and propped up. I am tired and grateful that today is over with. I never want to have another one like it or as bad or worse than this.
This pain was like being burned, stabbed and shot I would imagine all at the same time. It is not something that anyone would subject themselves to if they were not desperate. And when it wears of in six months to a year I will be back at the Dr. M's office begging him to do it again.
This procedure sucks! It is horrible. But it is also my only miracle. Hopefully once again I will be blessed by the results of the extra pain that I have endured by going through this will allow me to get around better and not be stuck in bed.
While it won't fix everything it does help in a major way. I am so grateful for that!
So here I will be sitting for a while. But I am praying to God that my miracle will once again happen and this will stop much of my daily neck pain. Then I can get back to therapy!!
Oh Lordy Lordy please help my mind erase the pain of today! Your broken child. Amen
Blessings from a grateful heart!
Pink Doberman
So the Radio Frequency Lesioning/Ablation procedure was today. Yuck! I mean, happy to have it done for sure.
This proved to be the worst one I have gone through yet. The procedure itself went well I think, time will tell. He put the needles in a different spot than he had previously, which caused me some intense horrible pain that I could not believe. It was a radiating burning sensation that was horrible intense and unbelievable. You wouldn't believe the pain if I could adequately describe it to you.
It did not help I kinda freaked out before the actual procedure. I had an uncomfortable situation with a nurse. She put my IV in or tried to put my IV in my right hand while sitting on the complete left side of my body, so I had to stretch my right arm to my left side and keep my face turned the opposite direction.
For those who follow this, it may be no surprise that this was not the best position to put my body in. I did manage, until she started telling me to Not MOVE Hold Still, and getting a bit more cranky... For starters, I HATE IV's! I REALLY REALLY HATE getting them in my hands!
My hands hurt anyway, and this is not the best place to find a good vein on me. She started, the more she poked around in there the squirmier I got. The more she told me to not move the more upset I got, (thank you PTSD ) Jason stepped in after my vein blew.
Ugg.. she then proceeded to get a clue.. my bed was moved, I was moved, and she did it the right way and she put it in the inside of the elbow. That is where I have the best luck getting IV's put in. I give the nurses two tries and then they have to go get someone else. I really am not that difficult, I have good veins..
So I already had tensed up muscles in my neck by the time I got to the surgical room. Oh the joys. It hurts more when I am tense than when I am relaxed. But it was over sooner rather than later. I think I only got three injections instead of 5 so that made it go faster. They do give you a sedative type thing, that relaxes you. But they need/want you to feel where the needles are placed so they can confirm that they get the correct spots. Which is not fun. They also take pictures of the procedure. Which is kinda cool, if you want to see needles sticking into your spine..
I got the injections they gave me a topical pain killer, and then after the ablation was over they gave me a longer lasting pain injection.. ( that is the one I really think did NOTHING for me) I don't know if it was different than before or the same. But I do know it provided no relief. The only thing I could think to do once I left that table was to get home and get my medication. ( I had forgotten my oral medication at home, which was horrible! )
I was practically falling out of the room to get out of there. I knew I was in trouble, and the fastest relief I could get was to get home quick. I was begging Jason to get me out of there! Which he went to work to do. Tracking down the nurses to get things going.. I hurt and it was only getting worse. My Ehlers Danlos Diagnosis is fairly new and Dr. M and I really did not discuss it allot. So he is not completely up to speed with it all. Besides he is not that kind of Dr..
We will discuss it more in a couple of weeks have no doubt. I am not going through another one of those with that same medication. I am also not going to forget my meds that I know work for me.
Oh my!
To top it off, our ride home was in our Jeep, that I love, but is not suitable for carrying a sensitive patient who feels every little bump. It was a horrible horrendous long ride home. I was unconsolable and the pain just kept escalating with every bump. I even had an ice pack but those really do not stay cold very long. Jason got put through is paces today.
We got home he carried me in to the house and put me in bed. THANK YOU ISAGENIX for helping me to loose weight.
So I have learned some lessons.
1. Do not get stressed out beforehand.
2. Bring my medication with me.
3. Get a hotel room near the procedure or plan a stay with a friend so there is not a long bumpy ride.
4. Bring lots of soft icepaks
5. As I can not eat prior, bring something to eat afterward.
Yes, we could have driven the car that dad is letting us borrow. However it still has no air, and when Jason drove it this week down the block to an appointment, he had to jump start it to get home.
Needless to say until that problem is fixed I am not to get in the car and go anywhere in it either, and Jason smartly avoided driving it although the ride is smoother, the last thing I needed was to sit out in the car in the heat, and wait for it to get a jump.
We made it home he got me in bed, and got me my medication. He snuggled up consoling me for hours until the medication made a dent in the pain. I don't think I would have made it through it if it had not been for his snuggling and niceness efforts. I was in Hades!
My friends and family were praying, Jason was hanging on and I was just trying to keep my sanity in this process. Trying not to move trying to keep packs and packs of ice around my neck head and back. Trying to not scream in Jason's ear and trying to stay as still as possible.
The meds started working and several hours later I was on the road to recovery. I am currently iced up, medicated, and propped up. I am tired and grateful that today is over with. I never want to have another one like it or as bad or worse than this.
This pain was like being burned, stabbed and shot I would imagine all at the same time. It is not something that anyone would subject themselves to if they were not desperate. And when it wears of in six months to a year I will be back at the Dr. M's office begging him to do it again.
This procedure sucks! It is horrible. But it is also my only miracle. Hopefully once again I will be blessed by the results of the extra pain that I have endured by going through this will allow me to get around better and not be stuck in bed.
While it won't fix everything it does help in a major way. I am so grateful for that!
So here I will be sitting for a while. But I am praying to God that my miracle will once again happen and this will stop much of my daily neck pain. Then I can get back to therapy!!
Oh Lordy Lordy please help my mind erase the pain of today! Your broken child. Amen
Blessings from a grateful heart!
Pink Doberman
Friday, June 25, 2010
ZZZZZZZZZZ's
So I go in tomorrow for my RFL procedure. I am happy about that! I know after this they will also have to do something to my lower back again but hey! I will be happy to sit with my head up for longer periods of time soon! It does take a while to work. But when it does take effect I love it! Life is so much better.
Now if only I would stop dislocating everything. ( I will be working on that again soon too!) Oh joy!
Well, today was the first day in a week and a half or so that I can remember getting out of the house. Except for a Dr. Appointment. Jason and I took a drive. It was lovely! We took a scenic drive to "tour" the flooded lake areas in our neck of the woods. He loves that sort of stuff. I love riding around with him. We had the "lid" off of his Jeep and we just drove for miles. When we got back to town, I was sure ready to get out of the Jeep. I waddled to bed and here I sit. Icing my back and neck. It was worth it! Besides it isn't like I am going to really be doing much of that right away anyhow.
I will be waiting at least another week before I start to move around much. Gotta get those injections sites healed good so I don't start bleeding. Ick!
Sorry no pictures. My hands at this point are going to sleep while I type so I need to get off the computer. Besides it is time to get some ZZZZz's
Please note: I am not feeling sorry for myself! I am overjoyed that this procedure is available to me!
One of the blogs I follow Nienie.. Look to the right of this post and you will see her blog. Read her courageous story! She is an inspiration to me! So is Katheryn Wolf read her blog too! Wow, well actually there are countless inspiring people out there. Ok I really need to stop now..
I will post tomorrow about how it went. Thanks for popping by!
Blessings!
Pink Doberman
Now if only I would stop dislocating everything. ( I will be working on that again soon too!) Oh joy!
Well, today was the first day in a week and a half or so that I can remember getting out of the house. Except for a Dr. Appointment. Jason and I took a drive. It was lovely! We took a scenic drive to "tour" the flooded lake areas in our neck of the woods. He loves that sort of stuff. I love riding around with him. We had the "lid" off of his Jeep and we just drove for miles. When we got back to town, I was sure ready to get out of the Jeep. I waddled to bed and here I sit. Icing my back and neck. It was worth it! Besides it isn't like I am going to really be doing much of that right away anyhow.
I will be waiting at least another week before I start to move around much. Gotta get those injections sites healed good so I don't start bleeding. Ick!
Sorry no pictures. My hands at this point are going to sleep while I type so I need to get off the computer. Besides it is time to get some ZZZZz's
Please note: I am not feeling sorry for myself! I am overjoyed that this procedure is available to me!
One of the blogs I follow Nienie.. Look to the right of this post and you will see her blog. Read her courageous story! She is an inspiration to me! So is Katheryn Wolf read her blog too! Wow, well actually there are countless inspiring people out there. Ok I really need to stop now..
I will post tomorrow about how it went. Thanks for popping by!
Blessings!
Pink Doberman
Thursday, June 24, 2010
My BoDy is the same as the WeAtHeR... Or is it??
I had made a post a long time back that My BoDy is the same as the WeAtHeR.. I am excited to report that almost six years now after the accident this is no longer the case.
An earlier Post I was Cursing the Weather and the fact I could not get my RF procedure any sooner.
2005 Some of my thoughts ( This one is a long one folks. I moved it over from a blog I had started a while back in another format.)
It used to be with every front, change in the barometer etc that my body would go into a horrible state. Emergency Rooms Days upon days of migraine pain. No relief and when some was found, I might have a good 12-24 hours before the next one hit.
I have been better for about a year now I think. The weather related migraines seemed to have stopped! PRAISE GOD! Man oh Man how glad am I. I can still feel in my limbs a change. But it is so much more subtal than it has been previously. I have been testing this theory out this past year as each system came through, my body has had very little reaction to it. Oh Oh Lordy Lordy, this girl is incredibly happy!
While I still have lots of things going on that are wrong with my body. The weather related migraines had made my life HELL. Had made Jason's life HELL. I still get migraines. I get the kind I have always gotten around that time of the month occasionally. I really do not believe they are migraines, more like bad headaches. And then I still get the ones that are related to how I move my head.
So I still have to keep that in check. Luka can Alert on those rather well so that helps so much!
Oddly he never has noticed the PMS ones.
So, here's my plan.
Once I get my RF procedure. It will be two to three months at least of PT and daily exercises before I am going to be able to do much. I am getting a motor chair tomorrow, so that should really help me get places around town. As it is I do not leave the house without Jason. This way I will be able to scoot around with the rest of the girls in the neighborhood! That should be rather nifty. I will also be able to get groceries at the store! ON MY OWN! Yipee!!!
I am hoping with a month or so of therapy under my belt I could start driving myself again. FINGERS crossed! That would mean I could get myself to my own therapy appointments. Of course I will have to carry my cooler of ice packs in the car as it does not have air conditioning.. Ha Ha! Dad offered to get it fixed if it was not much money. But, I feel guilty getting it fixed. I mean it does work. So we will just have to see how it goes. I may have to break down and take it to the Excellent Ford Dealership to get fixed.
So..
Radio Frequency Procedure.. Week 1 REST and don't move my neck so I do not do something and bleed.
Week 2 Start Back to Therapy! WOOT
Week 3 Continue Therapy Start Doing what I can around the house SLOWLY
Week 4 Continue Therapy Evaluate what I am doing and see if I can do more
Week 5 Continue Therapy.. Can I drive yet?
Week 6 Continue Therapy.. What can I do outside?
Week 7 Continue Therapy.. What else can I do?
Week 8 Hopefully driving myself to therapy by now...
Week 9 continue..
Week 10 Can I also run errands?
Week 11 Maybe I will be holding myself together better by now? Keep on Keeping on..
Week 12 Work Harder Start Pushing myself more.. What are my boundries??
Week 13 Get those projects done that have been sitting around piling up.
Week 14 Stick with the Therapy, Do as much as I can Where Ever I can!!
I still have hopes and dreams you see! (They are in my head somewhere. I'll be dusting them off now..)
So this is my plan. I really hope this works. My limbs are so much more unstable that they have ever been before. This winter really did a number on me and the last RF procedure started to wear off in late November early December.. I've been a mess ever since. So now it is almost July and I will finally be getting some relief. I hope my doctor now has the willingness to do my RFL closer together like before.
My RFL Typically lasts anywhere from six months to a year. So I just have to be paying attention and be prepared to slow myself down before I get into trouble. Until I can get my next procedure. I have a window that is about to open where my pain level will be reduced greatly in my neck and I will have opportunities not afforded to me in the past six plus months. So I do not intend on wasting a moment.
I think he almost wanted to start crying with me when he was in the office examining me. At least he has feelings. Better than a doctor who has no empathy. I guess that is a reason he makes a good pain management specialist. Although I think I am about his youngest patient. Everyone else in there is around 70+ years old.
Oh well, it works and I am not about to complain. My body feels like it is 70 but my mind feels like it is 16 and just wants to go dancing with my friends! I am quite the contradiction.
Well fingers crossed that I can pull this off and my body will cooperate. I am not going to get my hopes up about working just yet. But I am definitely keeping that in mind! Right now I am soaking as much information in as possible, trying out possibilities and learning and researching all that I can. I hope some way some day I can do something that not only provides an awesome income but is also fulfilling and gives back to others.
Thanks for following me on this journey. Miracles happen! I am so grateful to have concrete improvement in my situation! Between the weather not causing migraines every day or every other day and my getting another RFL procedure. I feel as if I have some potential my neck has been the largest source of pain since the accident. And it will be so great to be able to hold it up on my own at least sometimes. With out the fear of so much pain.
I know I know I am going to be careful. I hear Jason's concern in my head. I will really try to not do anything to mess myself up more! I won't over do! I will just proceed slowly and safely!
Ugg! That is so not my personality! Can you say Bull in a China Shop? Here is a Bull Elk that Jason took a picture of near our house the other day.
Yup. Today is the best day I have had in EIGHT DAYS! Thank God! I am still resting in bed.. But today I have hurt the least, and I even sat in a fluffy chair in my living room for a bit this morning, and had a chat with a neighbor. Life has been nice!
Well. I am off to watch some more from CreativeLive.com . We bought the training session! It is so worth it! I think I will watch it until I have it memorized. Jason is far better at the technical stuff, I am better with the creative stuff, so we make a great team!
Speaking of Creative! I managed to make a background for my twitter page!! Woot! I have to admit I was a bit nervous about doing it but now that I have done it I think I could do it again and again! What I made totally features Luka! I've been adding followers on Twitter too! It is so fun to have new friends!
Now if I would just learn what all of the tweeting abbreviations mean. ( I have been studying that too! ) I love Google!
Well, that is all for now. Blessings!
Pink Doberman
An earlier Post I was Cursing the Weather and the fact I could not get my RF procedure any sooner.
2005 Some of my thoughts ( This one is a long one folks. I moved it over from a blog I had started a while back in another format.)
It used to be with every front, change in the barometer etc that my body would go into a horrible state. Emergency Rooms Days upon days of migraine pain. No relief and when some was found, I might have a good 12-24 hours before the next one hit.
I have been better for about a year now I think. The weather related migraines seemed to have stopped! PRAISE GOD! Man oh Man how glad am I. I can still feel in my limbs a change. But it is so much more subtal than it has been previously. I have been testing this theory out this past year as each system came through, my body has had very little reaction to it. Oh Oh Lordy Lordy, this girl is incredibly happy!
While I still have lots of things going on that are wrong with my body. The weather related migraines had made my life HELL. Had made Jason's life HELL. I still get migraines. I get the kind I have always gotten around that time of the month occasionally. I really do not believe they are migraines, more like bad headaches. And then I still get the ones that are related to how I move my head.
So I still have to keep that in check. Luka can Alert on those rather well so that helps so much!
Oddly he never has noticed the PMS ones.
So, here's my plan.
Once I get my RF procedure. It will be two to three months at least of PT and daily exercises before I am going to be able to do much. I am getting a motor chair tomorrow, so that should really help me get places around town. As it is I do not leave the house without Jason. This way I will be able to scoot around with the rest of the girls in the neighborhood! That should be rather nifty. I will also be able to get groceries at the store! ON MY OWN! Yipee!!!
I am hoping with a month or so of therapy under my belt I could start driving myself again. FINGERS crossed! That would mean I could get myself to my own therapy appointments. Of course I will have to carry my cooler of ice packs in the car as it does not have air conditioning.. Ha Ha! Dad offered to get it fixed if it was not much money. But, I feel guilty getting it fixed. I mean it does work. So we will just have to see how it goes. I may have to break down and take it to the Excellent Ford Dealership to get fixed.
So..
Radio Frequency Procedure.. Week 1 REST and don't move my neck so I do not do something and bleed.
Week 2 Start Back to Therapy! WOOT
Week 3 Continue Therapy Start Doing what I can around the house SLOWLY
Week 4 Continue Therapy Evaluate what I am doing and see if I can do more
Week 5 Continue Therapy.. Can I drive yet?
Week 6 Continue Therapy.. What can I do outside?
Week 7 Continue Therapy.. What else can I do?
Week 8 Hopefully driving myself to therapy by now...
Week 9 continue..
Week 10 Can I also run errands?
Week 11 Maybe I will be holding myself together better by now? Keep on Keeping on..
Week 12 Work Harder Start Pushing myself more.. What are my boundries??
Week 13 Get those projects done that have been sitting around piling up.
Week 14 Stick with the Therapy, Do as much as I can Where Ever I can!!
I still have hopes and dreams you see! (They are in my head somewhere. I'll be dusting them off now..)
So this is my plan. I really hope this works. My limbs are so much more unstable that they have ever been before. This winter really did a number on me and the last RF procedure started to wear off in late November early December.. I've been a mess ever since. So now it is almost July and I will finally be getting some relief. I hope my doctor now has the willingness to do my RFL closer together like before.
My RFL Typically lasts anywhere from six months to a year. So I just have to be paying attention and be prepared to slow myself down before I get into trouble. Until I can get my next procedure. I have a window that is about to open where my pain level will be reduced greatly in my neck and I will have opportunities not afforded to me in the past six plus months. So I do not intend on wasting a moment.
I think he almost wanted to start crying with me when he was in the office examining me. At least he has feelings. Better than a doctor who has no empathy. I guess that is a reason he makes a good pain management specialist. Although I think I am about his youngest patient. Everyone else in there is around 70+ years old.
Oh well, it works and I am not about to complain. My body feels like it is 70 but my mind feels like it is 16 and just wants to go dancing with my friends! I am quite the contradiction.
Well fingers crossed that I can pull this off and my body will cooperate. I am not going to get my hopes up about working just yet. But I am definitely keeping that in mind! Right now I am soaking as much information in as possible, trying out possibilities and learning and researching all that I can. I hope some way some day I can do something that not only provides an awesome income but is also fulfilling and gives back to others.
Thanks for following me on this journey. Miracles happen! I am so grateful to have concrete improvement in my situation! Between the weather not causing migraines every day or every other day and my getting another RFL procedure. I feel as if I have some potential my neck has been the largest source of pain since the accident. And it will be so great to be able to hold it up on my own at least sometimes. With out the fear of so much pain.
I know I know I am going to be careful. I hear Jason's concern in my head. I will really try to not do anything to mess myself up more! I won't over do! I will just proceed slowly and safely!
Ugg! That is so not my personality! Can you say Bull in a China Shop? Here is a Bull Elk that Jason took a picture of near our house the other day.
Yup. Today is the best day I have had in EIGHT DAYS! Thank God! I am still resting in bed.. But today I have hurt the least, and I even sat in a fluffy chair in my living room for a bit this morning, and had a chat with a neighbor. Life has been nice!
Well. I am off to watch some more from CreativeLive.com . We bought the training session! It is so worth it! I think I will watch it until I have it memorized. Jason is far better at the technical stuff, I am better with the creative stuff, so we make a great team!
Speaking of Creative! I managed to make a background for my twitter page!! Woot! I have to admit I was a bit nervous about doing it but now that I have done it I think I could do it again and again! What I made totally features Luka! I've been adding followers on Twitter too! It is so fun to have new friends!
Now if I would just learn what all of the tweeting abbreviations mean. ( I have been studying that too! ) I love Google!
Well, that is all for now. Blessings!
Pink Doberman
Wednesday, June 23, 2010
PoSt TrAuMaTiC StReSs DiSoRdEr ( PTSD )
I am not going to talk about me or that part of my life. Not here. If you know me and you ask me in person I may. It isn't that I am not willing to share. I am just not willing to share with EVERYONE. I have strict criteria. Criteria that keep me sane and keep me functioning at a level beyond crazy messed up and unfunctioning. Yes I have been there before. I have no intention of going back. I avoid at all costs the things that will reintroduce me to that life. It is an unsafe life that is very difficult for me to pull myself of it, and go on focusing on the future instead of moments from the past.
However, understanding that many people do not understand Post Traumatic Stress Disorder ( PTSD ) I feel an obligation to share something about it. I do understand it. I understand it all to well. I wish I did not. I wish I could look at people with an innocent a wondering gaze and innocently go on with my life as if the thoughts had never crossed my mind.
I hide it well. I learned that in my Mary Kay life. Shutting off parts of your soul and you mind so that others have no ability to see inside. Unfortunately what is inside still is there. You still have to deal with it. You still have to have the energy to control it. You have to be proactive with your life and keep yourself safe.
I have learned. I have not mastered anything. I have not overcome it. It is still here. It may never go away, although I wish it will. My husband has suffered for it. Physically as well as emotionally. It is apart of who I am and we live with it.
My PTSD was not caused by a traditional "War Time Event". But knowing that many who are coming back from places like this struggle as well as many others who have never been to an over seas conflict are also plagued by it. I want to share a couple of blogs. A very special very candid blog written by Ray at Cold Steel Rain or John as found at The Enemy Within . The two sides. Reality and Former Reality which has a distinctive way of sneaking its self into the current reality.
Oddly enough Cold Steel Rain is ending, and it looks as if The Enemy Within is just beginning. Check them out.
I have never of course met John or Ray. But their writings are so similar to what goes through my mind what I fight with and he is able to describe it so succinctly I thought I would share.
It is a pervasive problem without a real solution.
Blessings and may all of your thoughts be happy ones.
Pink Doberman
However, understanding that many people do not understand Post Traumatic Stress Disorder ( PTSD ) I feel an obligation to share something about it. I do understand it. I understand it all to well. I wish I did not. I wish I could look at people with an innocent a wondering gaze and innocently go on with my life as if the thoughts had never crossed my mind.
I hide it well. I learned that in my Mary Kay life. Shutting off parts of your soul and you mind so that others have no ability to see inside. Unfortunately what is inside still is there. You still have to deal with it. You still have to have the energy to control it. You have to be proactive with your life and keep yourself safe.
I have learned. I have not mastered anything. I have not overcome it. It is still here. It may never go away, although I wish it will. My husband has suffered for it. Physically as well as emotionally. It is apart of who I am and we live with it.
My PTSD was not caused by a traditional "War Time Event". But knowing that many who are coming back from places like this struggle as well as many others who have never been to an over seas conflict are also plagued by it. I want to share a couple of blogs. A very special very candid blog written by Ray at Cold Steel Rain or John as found at The Enemy Within . The two sides. Reality and Former Reality which has a distinctive way of sneaking its self into the current reality.
Oddly enough Cold Steel Rain is ending, and it looks as if The Enemy Within is just beginning. Check them out.
I have never of course met John or Ray. But their writings are so similar to what goes through my mind what I fight with and he is able to describe it so succinctly I thought I would share.
It is a pervasive problem without a real solution.
Blessings and may all of your thoughts be happy ones.
Pink Doberman
Tuesday, June 22, 2010
ThE MiRaCLe ArOuNd ThE CoRnEr.. He wished to never wake up.
Sometimes we are one expert away from relief. In some cases that initial expert may be a health care practitioner, neighbor, family member, newspaper article, etc. that person/media introduces you to the source of the relief. You then are informed and can seek the actual experts.
But contrary to my former beliefs. Doctors do not know every problem that can arise with our bodies, it would be an impossibility for one person to understand everything. The best of the doctors will admit that they do not know, and research it as well as continue with ideas and referrals for you that may connect you with the person who does know.
Older doctors were taught certain things in medical school, seasoned doctors were taught much of the same but also were exposed to the latest things during their schooling. Newer doctors are being taught a mix of the discoveries prior as well to the latest discoveries and techniques.
Our "daughter" who is in school to become a doctor. Is quite worried and quite stressed by the pressing need she feels to understand and know it all. She is constantly studying and researching, as she feels a complete all encompassing need to absorb everything fully that she is being taught, as well as research what is being left out, and the latest medical news as it becomes available.
She is going to be an excellent doctor. She will be excellent, because she cares. She will not be excellent because she knows it all, although if anyone can learn it all I believe she could. She will use what she knows and research what she does not know.
I think with any of us this can be a true statement. Do the best with what you have be honorable be intentional be honest.
This next story is exactly like that. Like so many of our stories are. This the story that has inspired this post. Might I add that I LOVE my latest resource of Twitter! I learned about this miracle from the BBC on Twitter! He wished he could go to sleep and never wake up! The story of Bill Attew.
If you feel like giving up. If you are struggling. I have been there. I will probably be there again be for this is through. The thing that keeps me going is the miracle around the corner. Right now I am holding on for the My RFL Procedure I am counting the days... I want out of my prison!
While it won't solve it all it will provide some relief.
I hope you find the miracle you are looking for! Pass Bill Attew's Miracle along. You never know who needs this miracle!
Blessings,
Pink Doberman
But contrary to my former beliefs. Doctors do not know every problem that can arise with our bodies, it would be an impossibility for one person to understand everything. The best of the doctors will admit that they do not know, and research it as well as continue with ideas and referrals for you that may connect you with the person who does know.
Older doctors were taught certain things in medical school, seasoned doctors were taught much of the same but also were exposed to the latest things during their schooling. Newer doctors are being taught a mix of the discoveries prior as well to the latest discoveries and techniques.
Our "daughter" who is in school to become a doctor. Is quite worried and quite stressed by the pressing need she feels to understand and know it all. She is constantly studying and researching, as she feels a complete all encompassing need to absorb everything fully that she is being taught, as well as research what is being left out, and the latest medical news as it becomes available.
She is going to be an excellent doctor. She will be excellent, because she cares. She will not be excellent because she knows it all, although if anyone can learn it all I believe she could. She will use what she knows and research what she does not know.
I think with any of us this can be a true statement. Do the best with what you have be honorable be intentional be honest.
This next story is exactly like that. Like so many of our stories are. This the story that has inspired this post. Might I add that I LOVE my latest resource of Twitter! I learned about this miracle from the BBC on Twitter! He wished he could go to sleep and never wake up! The story of Bill Attew.
If you feel like giving up. If you are struggling. I have been there. I will probably be there again be for this is through. The thing that keeps me going is the miracle around the corner. Right now I am holding on for the My RFL Procedure I am counting the days... I want out of my prison!
While it won't solve it all it will provide some relief.
I hope you find the miracle you are looking for! Pass Bill Attew's Miracle along. You never know who needs this miracle!
Blessings,
Pink Doberman
Monday, June 21, 2010
OtHeR eLheRs DaNLoS PeRspEcTiVes...
I am happy about that but also concerned that they would not suffer like this. I do not know what my future holds but I am determined to tread as lightly as possible where my body is concerned. Not that I wouldn't love to go out and bat a volleyball around or even go for a run with Luka.
But I am learning that those things are not going to make me feel any better. What will, learning more about what I can do what I am still able to do and getting myself in alignment for that.
Whatever it ends up being.
Here is an article about a family who has EDS. They live near each other and have learned to work together to accomplish the tasks in their lives. The help of neighbors and friends also plays and important role.
This article written by Nicole Mattke shares a little about the signs of EDS.
15 year old Sarah Sickles shares about her life with EDS.
I had no clue what Ehlers Danlos Syndrome was. I have learned allot on my journey so far, not just about this but about many things. I realized that people with disabilities had limited lives. I truly believed that their needs were being met by the organizations out there. Wow was I wrong.
So I am going to work to continue to educate others about people with differing abilities and what they go through. Through my eyes and what I personally experience as well as through the eyes and thoughts of others and their experiences. I hope you will continue to follow me on my journey.
It has been an eye opening one for me that is for sure. I think many people who have this happen to them give up. I know the thought has crossed my mind a time or two. But there is a reason that I am going through this and I am determined that it will not be in vain.
Besides the friends I have left around me are great, even though none of them live that close to me. I am grateful so grateful that I made the kind of real friends that don't disappear when the going gets tough.
If you are out living your life and things are all going great for you. Please consider that making real friendships can be one of the utmost important things in your life. Be the kind of friend that you'd want a friend to be to you. Treating everyone as you would want to be treated is something that has served me well. I hope it is also something you can take to heart or already do.
Some of the lessons I have learned have been hard. Actually most of them are. Being such a stubborn person, I seem to have to hit my head pretty hard to actually get something knocked into me. ( Pardon my similarity to my physical condition.. )
We all go through things one way or another. I just hope to have more grace than I have had in the past when I go through things. It seems though that all of the tough things that you go through just prepare you for the even harder things yet to come. At any rate I'd rather be prepared.
In the meantime.. I am trying to talk Jason into making our living room that we never use into a place to shoot more pictures. We do things on the shoe string plan so if he goes for it we will be very inventive with our setup! Hey, what ever works! We did watch a great class on how to set up a photography set in a studio environment, and learn about lighting. The budgetary things that they used in their class are now being added to my wish list! Right now I am just excited I get to continue learning! Thanks CreativeLive.com !! Check it out! I think you'll be impressed!
I hope you have also enjoyed some more of my feathered friends that come over to eat!
Blessings,
Pink Doberman
Sunday, June 20, 2010
GoRdoN SeLLeY
Happy Father's Day! A Father important people in a a person's life. Thanks to all of the great fathers out there making this world a better place!
So I was searching a bit online. I try to share my story, as well as perspectives from others as I can. I have discovered You Tube... My husband loves You Tube, he finds hours of hilarity online. He loves the funniest things and likes to watch them a few times laughing his heart out each time. I wish I had his personality. I am a bit to stuffy and have a very dry sense of wit.
Anyway, this is an educational video not a funny one. Sorry, I will try to find something I think is funny to share as well.
Gordon is a person who deals with pain, and he does a good job of explaining how having chronic pain works...
I hope this works. I am hoping to add the actual video to my site so you can see it with out opening another link.
Fingers Crossed.
Pink Doberman
So I was searching a bit online. I try to share my story, as well as perspectives from others as I can. I have discovered You Tube... My husband loves You Tube, he finds hours of hilarity online. He loves the funniest things and likes to watch them a few times laughing his heart out each time. I wish I had his personality. I am a bit to stuffy and have a very dry sense of wit.
Anyway, this is an educational video not a funny one. Sorry, I will try to find something I think is funny to share as well.
Gordon is a person who deals with pain, and he does a good job of explaining how having chronic pain works...
I hope this works. I am hoping to add the actual video to my site so you can see it with out opening another link.
Fingers Crossed.
Pink Doberman
Saturday, June 19, 2010
PiNkDoBeRmAn iS oN TwiTTeR =)
So I am working on updating things around here. I finally have posted a picture of myself on my blogging profile. I have also updated what was written there to better reflect the situation. I am trying to figure out what else to do as well.. I am mid process shall we say.
One other thing, if you are so inclined you may also decide you'd like to follow me on Twitter. I am rather new to tweeting but I have been reading up on it so not to be a total twit.
You can find me on Twitter: PinkDoberman
I am finding twitter to be a great place to learn about things! So that is my two cent plug for Tweeting on Twitter.
I have gotten the good news I was hoping for so now it is just a waiting game until the actual procedure happens. I am counting down the days. As I hate taking all of this medication and I hate all of this pain. I also hate not being able to sit up. I want to be up and moving. I have only been able to drive the car downtown one time this whole year! I so want to be able to move my head again.
That will hopefully happen soon! I can't wait! I hate feeling like this it does bring back the memories of how I ended up this way. My car accident. Ugg. I was this way for YEARS! Until the Radio Frequency Solution was finally figured out.
It has not been until recently that Ehlers Danlos Hypermobility Syndrome was being told to me for the reason I was never going to get better like other people do. Three medical professionals have agreed that I need to go to a geneticist. I have the appointment, and then I hope to find some doctors that are more "expert" in dealing with this. I am hoping that I only have the Hypermobile version. I have already been poked positioned pulled, etc in ascertaining this. I wonder if I couldn't just make a video of myself doing all of these contorted things and then be done with it. So I don't have to go around stretching my parts more. I understand that that is bad for me to do.
In Fact there is an opportunity to support people with EDS by clicking! There is a contest for money to benefit a non profit group. So far The Ehlers Danlos Network is in the top percentage of those to get the funds. More votes are needed. The contest goes until July 15, 2010 or so. Click to go to the page anyway even if you are reading this post after that date. It will connect you with The Ehlers Danlos Network and you can learn more about EDS there as well!
I hope this makes sense. Per usual I am writing this in pain and on medication. Lately I have had particular difficulty gathering my thoughts. So frustrating.
At any rate I am proud of myself for getting this post finished.
Hope your day is going great! I am counting down the days until I get my Radio Frequency Procedure.
Possibilities Abound!
Pink Doberman
One other thing, if you are so inclined you may also decide you'd like to follow me on Twitter. I am rather new to tweeting but I have been reading up on it so not to be a total twit.
You can find me on Twitter: PinkDoberman
I am finding twitter to be a great place to learn about things! So that is my two cent plug for Tweeting on Twitter.
I have gotten the good news I was hoping for so now it is just a waiting game until the actual procedure happens. I am counting down the days. As I hate taking all of this medication and I hate all of this pain. I also hate not being able to sit up. I want to be up and moving. I have only been able to drive the car downtown one time this whole year! I so want to be able to move my head again.
That will hopefully happen soon! I can't wait! I hate feeling like this it does bring back the memories of how I ended up this way. My car accident. Ugg. I was this way for YEARS! Until the Radio Frequency Solution was finally figured out.
It has not been until recently that Ehlers Danlos Hypermobility Syndrome was being told to me for the reason I was never going to get better like other people do. Three medical professionals have agreed that I need to go to a geneticist. I have the appointment, and then I hope to find some doctors that are more "expert" in dealing with this. I am hoping that I only have the Hypermobile version. I have already been poked positioned pulled, etc in ascertaining this. I wonder if I couldn't just make a video of myself doing all of these contorted things and then be done with it. So I don't have to go around stretching my parts more. I understand that that is bad for me to do.
In Fact there is an opportunity to support people with EDS by clicking! There is a contest for money to benefit a non profit group. So far The Ehlers Danlos Network is in the top percentage of those to get the funds. More votes are needed. The contest goes until July 15, 2010 or so. Click to go to the page anyway even if you are reading this post after that date. It will connect you with The Ehlers Danlos Network and you can learn more about EDS there as well!
I hope this makes sense. Per usual I am writing this in pain and on medication. Lately I have had particular difficulty gathering my thoughts. So frustrating.
At any rate I am proud of myself for getting this post finished.
Hope your day is going great! I am counting down the days until I get my Radio Frequency Procedure.
Possibilities Abound!
Pink Doberman
Friday, June 18, 2010
RaDiO FreQuEnCy LeSiOniNg ~
Well today has gone like I had hoped and not like I had hoped. It is very evident that I am not ready to go to work yet. I look like I am dying. Whether I am taking medication or not. I think it is bad either way. The pain seems to not be able to get under control unless I am lying flat on my back with ice and meds. Then it gives me some "control" but it does not remove the pain.
So I am only going to talk about the good points of the day. I am going to completely leave out the worst things. They just make me furious. But then several things can get me going lately.
I made it to my appointment with my doctor today. I did not see his PA this time I saw him! Glory be to God! By the time I got to the doctor's office. I was a wreck. I woke up a wreck really, but I did get a bath with Jason's help and he did get my hair brushed out. Thank goodness for that as well. I really think that I may be due for a hair cut.
The wrong moves or chairs or whatever are making my pain intense. The good news is that my doctor saw me, inspected me, asked me questions and then agreed that the Radio Frequency Ablation or Lesioning (Click to SEE the actual procedure) was indeed the best answer for me. I will get four or five needles again. I can expect to do this for the rest of my life around once a year. At least that is the way it stands now. I am so grateful.
( I just found this video online that describes the procedure.)
Jason has been absolutely wonderful today. He is everyday. Today was a hard one. I have been in bed for about 6-7 days now. While I was out and about today, it was not a pretty site. Luka stayed home, I am not well enough to use his services, so Jason was on Super Duty!
Jason spoke up when the doctor asked questions and he made the appointment go so much smoother. He got me some water for me to take my medications with and helped me all around and in and out of the places we had to go.
Well at any rate. The day turned out better than it started. I am tucked back in bed and resting with my ice packs and am not planning on moving much. Hopefully I won't suffer for my actions today when tomorrow arrives.
The doctor even is squeezing in my procedure next week. Phew! I am so grateful!
On another note: There is now an actress Cherylee Houston in the United Kingdom that has and portrays a character with Ehlers Danlos Syndrome! How cool is that! Here is a link to an article I found about her. Another blog that I like to read shared a video link about her, sadly that link is only available to be watched inside the United Kingdom.. You can read the post at the very least at: Benefit Scrounging Scum
Go Cherylee! How great is that!
I have not been talking about the disaster going on in the gulf with the oil spill and the British Petroleum Disaster. I am aware. I am just to saddened by the entire ordeal to even have a comment on it. I am sending prayers for all of the wildlife and people who are being affected by this.
My cousins are even in one of these areas as well as several friends. Life sure does toss curve balls out.
So saying lots of prayers for lots of folks and lots of cares.
Hugs Blessings, and Strength.. with a Faith that we will all make it through!
Pink Doberman
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