Lets try this again, shall we?
Day 8
This is kinda fun!
Showing posts with label getting started. Show all posts
Showing posts with label getting started. Show all posts
Friday, January 10, 2014
Thursday, January 9, 2014
Happy New Year
Trying something a little different... a video blog entry!!
Yeah, I couldn't figure out how to imbed my video...
Wow. My hair is getting really long. Now you get to see my face and hear my voice for once. :)
Yeah, I couldn't figure out how to imbed my video...
Wow. My hair is getting really long. Now you get to see my face and hear my voice for once. :)
Monday, August 5, 2013
Post Op Appt
Just got in from my latest post op appointment with Dr Rohde. Have I mentioned how much I like her? Cuz I do. She gets my weird humor and gives it to me straight. My kinda Doctor!
Today I actually asked if I could have copies of my xrays and asked if I had her permission to use her name in this little blog o' mine. She gave an enthusiastic "yes!" and even asked for the URL. So if you're reading, Doc, "hi!"
It was a pretty straight forward appointment. Cast cut off, arm xrayed, follow up with the doctor. Its not quite where she wants to see it, so the cast is ace bandaged back on until I can get it splinted. She had suggested using one of my old ones... but they all have a bend in the wrist, and I no longer do. So custom splint it is!
I popped over to hands/OT after my appointment and gave them my script and scheduled my appointment for tomorrow. Then I will be FREE from this cast! YIPPEE!!!!
So progress is being made and I'm a happier camper than I was the other day. Pain still sucks, but it's gradually getting better.
Alrighty, first set of x-rays are pre-op (before my surgery). I was nice and put the left on the left side, and the right on the right side. SO! The right side is a fairly normal/healthy wrist. The left side is pretty jacked up. From the side you can see how my metatarsals (hand bones) are not lined up with my radius and ulna (forearm bones). There is a definite disconnect when you compare them side by side.
The dysfunction is even more obvious looking from the top down. Look at my right hand. You can see all my little carpals (wrist bones) lined up nice and pretty. Then look at the left - they are all over the place! Some are even up on top of the others! Definitely not quite right...
And here we have it... The postop (after surgery) final product. This is my wrist. My hardware. My plate and 8 screws. My hand is crazy atrophied (where the muscle shrinks away from disuse), so it is super skinny. My middle finger metatarsal is also slightly crooked to the left, so it gives my hand a slight bend to the outside... but I suspect as I build the muscle back up in my hand, it will flesh out and not be so noticeable.
There you have it, folks. I'll post pics tomorrow if my splint is finished.
Today I actually asked if I could have copies of my xrays and asked if I had her permission to use her name in this little blog o' mine. She gave an enthusiastic "yes!" and even asked for the URL. So if you're reading, Doc, "hi!"
It was a pretty straight forward appointment. Cast cut off, arm xrayed, follow up with the doctor. Its not quite where she wants to see it, so the cast is ace bandaged back on until I can get it splinted. She had suggested using one of my old ones... but they all have a bend in the wrist, and I no longer do. So custom splint it is!
I popped over to hands/OT after my appointment and gave them my script and scheduled my appointment for tomorrow. Then I will be FREE from this cast! YIPPEE!!!!
So progress is being made and I'm a happier camper than I was the other day. Pain still sucks, but it's gradually getting better.
Here's my show and tell moment!
Alrighty, first set of x-rays are pre-op (before my surgery). I was nice and put the left on the left side, and the right on the right side. SO! The right side is a fairly normal/healthy wrist. The left side is pretty jacked up. From the side you can see how my metatarsals (hand bones) are not lined up with my radius and ulna (forearm bones). There is a definite disconnect when you compare them side by side.
The dysfunction is even more obvious looking from the top down. Look at my right hand. You can see all my little carpals (wrist bones) lined up nice and pretty. Then look at the left - they are all over the place! Some are even up on top of the others! Definitely not quite right...
And here we have it... The postop (after surgery) final product. This is my wrist. My hardware. My plate and 8 screws. My hand is crazy atrophied (where the muscle shrinks away from disuse), so it is super skinny. My middle finger metatarsal is also slightly crooked to the left, so it gives my hand a slight bend to the outside... but I suspect as I build the muscle back up in my hand, it will flesh out and not be so noticeable.
There you have it, folks. I'll post pics tomorrow if my splint is finished.
Labels:
chronic illness,
disability,
EDS,
Ehlers Danlos,
getting started,
helping others understand,
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JIS,
joint instability syndrome,
occupational therapy,
orthopaedist,
pain,
splints,
surgery,
wrist fusion,
xrays
Saturday, July 13, 2013
Post Op - 2 weeks
Here we are, 2 weeks post op.
I'll be completely frank. This surgery SUCKED. Pain management was really an issue for the first 5 days... but everything is under control and I am completely off prescription pain medications. Yay. There were several nights tho that I really was having a hard time... I feel very lucky that I had one of my best guy friends to talk to at 3am on several occasions, otherwise I may have gone mad.
So this begins my journey of learning how to use my arm/hand all over again. Everything is going to be different on that side... Everything.
Heres a couple pictures for those who are curious. If not, scroll quick. ;)
As for the actual surgery... Doc said it was "jacked up" in there, and she feels 100% confident this was the best choice. I'm also her youngest wrist fusion to date. I asked if that earned me a metal... "Why yes," she said. "Its in your arm!"
Very clever... ;D
I was missing cartilage in some spots, had mutating cartilage in others... it was just a mess. Now it will be so much better!
OH! I've also started the application process for disability. No clue how that will pan out, but I gotta give it a try.
I'll be completely frank. This surgery SUCKED. Pain management was really an issue for the first 5 days... but everything is under control and I am completely off prescription pain medications. Yay. There were several nights tho that I really was having a hard time... I feel very lucky that I had one of my best guy friends to talk to at 3am on several occasions, otherwise I may have gone mad.
So this begins my journey of learning how to use my arm/hand all over again. Everything is going to be different on that side... Everything.
Heres a couple pictures for those who are curious. If not, scroll quick. ;)
Shortly after surgery. Very swollen and uncomfortable.
11 days post op - bandages come off and incision is revealed. Its lovely!
Detail of incision. Internal sutures and dermabond (skin adhesive glue)
I went with a nice black cast this time... Black goes with everything and is slimming, right? ;)
As for the actual surgery... Doc said it was "jacked up" in there, and she feels 100% confident this was the best choice. I'm also her youngest wrist fusion to date. I asked if that earned me a metal... "Why yes," she said. "Its in your arm!"
Very clever... ;D
I was missing cartilage in some spots, had mutating cartilage in others... it was just a mess. Now it will be so much better!
OH! I've also started the application process for disability. No clue how that will pan out, but I gotta give it a try.
Wednesday, May 29, 2013
Taking a Step in Any Direction
I'm completely at a crossroads in my life right now. So I took a step. I don't know if it was in the right direction, but it was a step in ANY direction. And now that I've taken it, I'm glad. Glad and freaking the heck out. But it was a step... and I can't be in limbo any longer. I can't hide or lie or pretend to feel something I don't. I had no freaking idea how hard this was going to be...
But it is what it is, and I've taken a step.
But it is what it is, and I've taken a step.
Monday, April 1, 2013
Training Has Begun
Having a compromised immune system in addition to everything else is a bunch of bull, if you ask me. Apparently I had forgotten that it's not just my muscles and joints that I have to be mindful of while training up ye 'ol body to do the 3-day... Apparently some internal organs are out of shape too. I already knew my heart was a little on the fritz, but I forgot my lungs would be working out too.
I have some kind of bronchial flare-up at the moment, and it's pissing me off. I've never had asthma before, so I'm not sure it's that... but I just keep coughing and can't seem to take a deep breath.
I love that I get one part of my body slightly under control (I use the term "slightly" loosely - I've managed to roll my ankle twice and popped my knee out Saturday night) and another part goes boink. But I'm going to try really really hard not to get discouraged and frustrated and beat myself up over something I can't control. All I can do is keep on keeping on.
I stumbled upon a quote from Gilda Radner that I'm trying to keep as my focus...
"Some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity..."
I've never been a fan of ambiguity. I like plans... structure... But lately I've been digging the idea of just letting it all go. Of just letting myself LET GO and just BE for a little while. We've talked about it in therapy, about me going away for the weekend and just "being" without anyone to bother me - to let me just have some time to regroup, refocus...
I want it. I want the space, the lack of responsibility other than for my immediate person, a chance to just rest and figure this shit out.
I have some kind of bronchial flare-up at the moment, and it's pissing me off. I've never had asthma before, so I'm not sure it's that... but I just keep coughing and can't seem to take a deep breath.
I love that I get one part of my body slightly under control (I use the term "slightly" loosely - I've managed to roll my ankle twice and popped my knee out Saturday night) and another part goes boink. But I'm going to try really really hard not to get discouraged and frustrated and beat myself up over something I can't control. All I can do is keep on keeping on.
I stumbled upon a quote from Gilda Radner that I'm trying to keep as my focus...
"Some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity..."
I've never been a fan of ambiguity. I like plans... structure... But lately I've been digging the idea of just letting it all go. Of just letting myself LET GO and just BE for a little while. We've talked about it in therapy, about me going away for the weekend and just "being" without anyone to bother me - to let me just have some time to regroup, refocus...
I want it. I want the space, the lack of responsibility other than for my immediate person, a chance to just rest and figure this shit out.
Tuesday, March 19, 2013
A New Focus
I registered for the Komen 3-day walk in August. It might end up being physically impossible for me to do, but damnit I'm going to try. I have to do something... I've just felt so lifeless and empty lately. I need to do something for myself that reminds me I'm alive. Not only for myself, but also for the millions of women who have fought against breast cancer.
It may not have been the "smartest" thing for me to sign up to do, given my physical limitations and emotional vulnerability at the moment... but I did it. I need a goal. Something to work towards...
One step at a time...
It may not have been the "smartest" thing for me to sign up to do, given my physical limitations and emotional vulnerability at the moment... but I did it. I need a goal. Something to work towards...
One step at a time...
Saturday, March 16, 2013
A Hallow Shell
I downloaded a fun little horoscope app onto my phone, as I was curious what the stars had to say about things for me... So far it's been pretty on the money - saying that things are pretty tumultuous at the moment.
Todays said: You know where you are and you know where you want to be. That is the first step and the last step. All you have to do is fill in the middle and you're on your way!
Seems about right.
But there was something else about this app that caught my attention and made me go "hmm..."
The attributes of my sign are: Active, Demanding, Determined, Effective, and Ambitious.
There was a time when I was all of those things. I intimidated people with my determination and my demanding/commanding presence. Where did I go? When did I lose my "oomph?" I can feel little pieces of the old me trying desperately to break free. Pushing to the surface. Trying to catch a breath of air to bolster itself to finally break out of the hallow shell of whom I've become.
I want to get back to me. I want to be the intelligent, vibrant woman I once was. Now, I understand that I will never be completely the same. I know that my body is different now, on so many levels, that my physical self will never get back to the way that it was. I'm pretty ok with that. I've never been 100% comfortable in my own skin anyways, so this is nothing new. But lately I haven't been comfortable in my own head either. It's kind of a shit storm in there...
You know where you are. Yep. I know exactly where I am. A broken, faded, reflection of who I once was.
You know where you want to be. I want to resurface - to breathe - to rekindle the love affair with myself. To embrace my Active, Demanding, Determined, Effective and Ambitious self.
All you have to do is fill in the middle and you're on your way! Of course they make this part sound so easy... so whimsical, haha. Falling in love with me again means admitting I've falling out of love. With myself, with others... with life. I had forgotten what passion felt like. I had forgotten what inspiration feels like as it tingles its way through you, guiding you, proding you, encouraging you onward.
This week someone said to me "You are wise beyond your years. I almost feel dumb around you. You don't make me feel that way.. but you are just a smart girl." It was the nicest compliment I have gotten in a very long time... and it kinda felt like the old me was making an appearance again.
Todays said: You know where you are and you know where you want to be. That is the first step and the last step. All you have to do is fill in the middle and you're on your way!
Seems about right.
But there was something else about this app that caught my attention and made me go "hmm..."
The attributes of my sign are: Active, Demanding, Determined, Effective, and Ambitious.
There was a time when I was all of those things. I intimidated people with my determination and my demanding/commanding presence. Where did I go? When did I lose my "oomph?" I can feel little pieces of the old me trying desperately to break free. Pushing to the surface. Trying to catch a breath of air to bolster itself to finally break out of the hallow shell of whom I've become.
I want to get back to me. I want to be the intelligent, vibrant woman I once was. Now, I understand that I will never be completely the same. I know that my body is different now, on so many levels, that my physical self will never get back to the way that it was. I'm pretty ok with that. I've never been 100% comfortable in my own skin anyways, so this is nothing new. But lately I haven't been comfortable in my own head either. It's kind of a shit storm in there...
You know where you are. Yep. I know exactly where I am. A broken, faded, reflection of who I once was.
You know where you want to be. I want to resurface - to breathe - to rekindle the love affair with myself. To embrace my Active, Demanding, Determined, Effective and Ambitious self.
All you have to do is fill in the middle and you're on your way! Of course they make this part sound so easy... so whimsical, haha. Falling in love with me again means admitting I've falling out of love. With myself, with others... with life. I had forgotten what passion felt like. I had forgotten what inspiration feels like as it tingles its way through you, guiding you, proding you, encouraging you onward.
This week someone said to me "You are wise beyond your years. I almost feel dumb around you. You don't make me feel that way.. but you are just a smart girl." It was the nicest compliment I have gotten in a very long time... and it kinda felt like the old me was making an appearance again.
Wednesday, March 6, 2013
Interesting Side Effect...
Went to couples therapy Monday night. It was originally meant to be for us to work through our issues and learning to cope with the "new normal" together. But as I was seeing the councellor separately first, it kind of morphed into what can I do to make myself more comfortable, more stress-free, and the topic of me "taking a break" from my family was discussed. I had a breakdown and told hubby all about the things I had been thinking/feeling (wanting to leave, having everything planned out should I "accidentally" parish, not feeling happy, etc) and he was actually excited to go to therapy. I was so uncomfortable the entire time I was there, but I had some very moving moments of opening up about my past relationships - of what has brought me to where I am today.
I had an enormous breakthrough of letting go of past hurts... I have always been very envious of the relationship my mother and sister have, and as long as I can remember, my mother has always said "I don't want to hear it" when I would attempt to be closer to her - to share my life with her on a deeper level. I thought for years it was something I had said or done that caused her to have no interest in a deeper relationship with me. It wasn't until this therapy session that I realized it's not because she doesn't love me - it's because she loves me so much that when I share hard times and pain, it is just too intense for her. I can empathize with that completely. Its her defense mechanism that I had been misunderstanding as lack of interest/lack of caring. I felt a great sense of relief, a weight lifted from me when it finally dawned on me.
The rest of the session wasn't quite so warm and fuzzy (not that the previous realization was what I would call warm and fuzzy to begin with)... Hubby admitted he knew I wasn't happy, that he doesn't think I've ever really been "happy," nor does he really believe I'm capable. That was hard to hear, but mostly because it's true. We talked about how I internalize EVERYTHING and never really let things out. It was good to have that acknowledged.
But the strangest thing happend on the way home. I started to hurt... All over. And intense ache through every tissue in my body. I suspect I've not only been internalizing my mental pain, but my physical as well. I was not prepared for such a flood of physical pain. I am NOT a fan of that... If opening up and being a better person means being in chronic pain all the time, I'll take being an introverted hag over the alternative any day...
I had an enormous breakthrough of letting go of past hurts... I have always been very envious of the relationship my mother and sister have, and as long as I can remember, my mother has always said "I don't want to hear it" when I would attempt to be closer to her - to share my life with her on a deeper level. I thought for years it was something I had said or done that caused her to have no interest in a deeper relationship with me. It wasn't until this therapy session that I realized it's not because she doesn't love me - it's because she loves me so much that when I share hard times and pain, it is just too intense for her. I can empathize with that completely. Its her defense mechanism that I had been misunderstanding as lack of interest/lack of caring. I felt a great sense of relief, a weight lifted from me when it finally dawned on me.
The rest of the session wasn't quite so warm and fuzzy (not that the previous realization was what I would call warm and fuzzy to begin with)... Hubby admitted he knew I wasn't happy, that he doesn't think I've ever really been "happy," nor does he really believe I'm capable. That was hard to hear, but mostly because it's true. We talked about how I internalize EVERYTHING and never really let things out. It was good to have that acknowledged.
But the strangest thing happend on the way home. I started to hurt... All over. And intense ache through every tissue in my body. I suspect I've not only been internalizing my mental pain, but my physical as well. I was not prepared for such a flood of physical pain. I am NOT a fan of that... If opening up and being a better person means being in chronic pain all the time, I'll take being an introverted hag over the alternative any day...
Saturday, February 2, 2013
Getting Something Together... Kitchen
Through a bit of teamwork between Hubby and I, and the use of my new canisters and labeler, the kitchen is in a much better place now. I'll be honest, it was bad. Really bad... I'm not going to hold anything back here... the before pictures are preeeeeety scary looking. But, here goes.
Before:
After:
Before:
After:
Before:
After:
Before:
After:
Before:
After:
Before:
After:
Before:
After:
Clearly a vast improvement. Hubby and I agreed that if he and I tackled a room per weekend like this and maintained the past rooms we've attacked, the house will be amazing in just a couple weeks. I'm feeling better. Accomplishment will do that. :)
Tuesday, January 8, 2013
Getting Something Together... Linen Closet
My body isn't the only thing falling apart. So is my household. Since I am a control freak (I try not to be, really I do...) I need to take control of something. And as my own body seems to be on the fritz (confirmed new tear in lower abs. Joy.) I've decided to try to focus on the things I actually can change.
Like my house.
Currently it's trashed. Mind you, I do kinda live with a hoarder, and I am not the cleanest person in the world either. But it's bad. Like HELL NO company can't come in should they show up. So last friday I attacked the top half of the linen closet. I wanted to start small. Pace myself.
Our linen closet is the catch-all for paper products, cleaning supplies, first aid randomness, and a whole slew of other things. I had been cruising around on pinterest, looking for inspiration, and saw a pin on converting old diaper boxes into storage. That pin was pretty hardcore - covering the boxes with black fabric, then lining the interior with another fabric bag.
Yeah, um, waaaay too involved. I don't want to buy yards and yards of fabric. I do, however, have a HUGE roll of heavy duty brown paper. I covered 3 boxes with the brown paper and used those. I took everythng out of the linen closet and put them into piles based on what they were for. I had the big wicker basket in there already, so I was able to reuse it. Cleaning supplies went in there. I also have containers for bathroom supplies, hair supplies and paper products. It looks soooo much better.
Like my house.
Currently it's trashed. Mind you, I do kinda live with a hoarder, and I am not the cleanest person in the world either. But it's bad. Like HELL NO company can't come in should they show up. So last friday I attacked the top half of the linen closet. I wanted to start small. Pace myself.
Here was before:
Our linen closet is the catch-all for paper products, cleaning supplies, first aid randomness, and a whole slew of other things. I had been cruising around on pinterest, looking for inspiration, and saw a pin on converting old diaper boxes into storage. That pin was pretty hardcore - covering the boxes with black fabric, then lining the interior with another fabric bag.
Yeah, um, waaaay too involved. I don't want to buy yards and yards of fabric. I do, however, have a HUGE roll of heavy duty brown paper. I covered 3 boxes with the brown paper and used those. I took everythng out of the linen closet and put them into piles based on what they were for. I had the big wicker basket in there already, so I was able to reuse it. Cleaning supplies went in there. I also have containers for bathroom supplies, hair supplies and paper products. It looks soooo much better.
After an overhaul and organization:
I threw out a LOT of stuff. Random empty containers, expired products, etc. I'm feeling pretty good about it.
Next hurdle... Attacking the kitchen. I went through and took all my "before" pictures. And I didn't even do a prelimenary clean out to make it cleaner... Nope, it's true, its raw, its filthy!!
Wednesday, December 5, 2012
Discharged From OT
It's hard to believe, but as of today I've been discharged from OT. My most sincere thanks and gratitude go out to Marilyn and Kelly, my compassionate, brilliant, amazingly wonderful OT's. I've already friended one of them on fb, and I'm sure I'll be keeping in touch with the other. I feel overwhelming gratitude to these women, who have been so instramental to helping me achieve the tools I need in order to be successful. They have been nothing but 100% supportive along this leg of my journey, and I can honestly say they have been a blessing.
Marilyn and I were discussing today ways to make splints and braces more "beautiful" and I think I may be on to something... I came across a really cool bracelet on Etsy that I may be able to incorporate into my bracing. And it appears it may be easy enough to make on my own. Marilyn even gave me some extra foam and told me to give it a try - and to come in and show her if it is a success!! :D
Marilyn and I were discussing today ways to make splints and braces more "beautiful" and I think I may be on to something... I came across a really cool bracelet on Etsy that I may be able to incorporate into my bracing. And it appears it may be easy enough to make on my own. Marilyn even gave me some extra foam and told me to give it a try - and to come in and show her if it is a success!! :D
Here's the bracelet I was looking at:
I was thinking I might be able to wrap it on top of my already existing brace, or incorporate it into becoming an actual brace itself. I may have to check out Michaels to see what clasps they have, and possible medallions. Maybe a new calling?
Monday, December 3, 2012
Silver Ring Splints
Someone got a Christmas present early... My silver ring splints arrived!! We somehow managed to miss ordering my left thump DIP joint, so that one has been re-ordered... but the rest are in my possession and on my fingers. I'm typing with them on RIGHT NOW. And I have to be honest... My fingers feel AMAZING. I cried at OT today as I zipped up my jacket to leave - I could actually zip up my jacket without any knuckles buckling. They didn't hurt. It was AMAZING. I feel so blessed to have these tools!!
Now to that I feared would be the tricky part... I needed to figure out a way to store them when I have to take them off! There are currently 17 of them (soon to be 18) and they are all different sizes. Well, technically 3 of them are the same size, but I just have to learn/memorize who goes on what joint! So I mentioned this to hubby and he suggested something really quite helpful! He went out and purchased a foam core block that has sections that punch out - it's originally used for storing miniatures - but it worked out just great for the rings! I punched out individual homes for each ring, and there was enough room left over to also create spots for my wrist brace and both thumb braces. Yay!!
And now, for some pictures!
Now to that I feared would be the tricky part... I needed to figure out a way to store them when I have to take them off! There are currently 17 of them (soon to be 18) and they are all different sizes. Well, technically 3 of them are the same size, but I just have to learn/memorize who goes on what joint! So I mentioned this to hubby and he suggested something really quite helpful! He went out and purchased a foam core block that has sections that punch out - it's originally used for storing miniatures - but it worked out just great for the rings! I punched out individual homes for each ring, and there was enough room left over to also create spots for my wrist brace and both thumb braces. Yay!!
And now, for some pictures!
What they look like from underneath:
Fingers all braced up and ready to go:
My fingers look really really swollen in this picture:
Storage container, with all rings and braces inside:
Silver rings looking all sparkley and pretty:
Sunday, November 18, 2012
Open Letter to Spouse/Partner*
Dear significant other,
Please understand that I am going through a horrible ordeal. I feel terrible about inflicting my illness on you. I know that you're affected by my changes, and I wish it were otherwise. I dont want to be ill.
I feel guilty about my inability to shoulder former responsibilities at work and at home, dumping more on you. I wish I could do more or know in advance what I will be capable of each day. I worry that you'll think Im lazy or trying to dodge responsibilities I dislike, but thats not it. Sometimes I just cant, and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.
I want to know that I can trust you and that you will be available to listen and try to understand. And Ill try to understand that you cant always be available.
At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is part of my illness, and I'll try to keep it under control. I dont mean to direct the anger and frustration at you, but I will sometimes fail. If my mood swings become too hard to take and you feel ready to explode, please tell me so, gently. Maybe one of us can leave the scene, and we can talk about it later when we're both calmer.
Sometimes I need to talk about these irrational feelings. Just listen, okay? Please dont tell me how to feel or how not to feel. You can't "fix" my feelings. Please dont judge them; just accept and acknowledge them. When you say such things as, "your illness must be terribly frustrating for you," I feel understood and comforted. But dont tell me you know how I feel. You dont and you cant; no one can know exactly what this is like for me. And when I cry, dont try to make me stop. Please let me cry - I'll feel better later.
I know I complain a lot. It helps to relieve tension. If my complaining strains your tolerance, please tell me so. I wont like hearing it, and may not handle it well, but I really do understand that you need to distance yourself from my complaints.
I need to work at making clear requests so that you'll know what I need. It's not your job to mind-read - its my responsibility to ask for what I want. This is difficult for me; its easier for me to meet others' needs than to admit my own and ask that they be met.
Dont try to talk me out of my symptoms or remind me that they're not as bad as they could be or not as bad as they were. I know I need to stay hopeful, but if you take an optimistic role when Im feeling pessimistic, I feel as if you dont understand me and wont validate my feelings.
I know you dont understand why Im sick. Neither do I. Lets stay away from blame and acknowledge our feelings of helplessness.
Dont give up your whole life for me. Please continue to do the things that are important to you. I wont always be able to do them with you, so do them alone or with a friend. Sometimes I resent my limitations and your freedom, but I'll try to keep a healthy perspective. If you put your life on hold because of my illness, I'll feel guilty and your resentment will build. I appreciate your invitations to do things as a reminder that you still value my company. Please dont assume what I can or can't do; ask, and I'll answer you honestly. I hope you will understand that when I say "no," its not because I dont want to but because I can't or shouldn't.
I know I'm not the way I used to be. I'm trying to learn from my illness, from these changes, and you can help. We can't pretend that things are the way they were or that they'll ever be the same again. But as we change and grow, I want us to grow together rather than apart. Lets keep the lines of communication open. When I need to withdraw, I'll try to let you know so you wont take it personally. Please do the same for me. Don't just pull away; explain to me that you need distance temporarily so I'm less inclined to feel abandoned.
Because we're both experiences losses, we need to grieve. Some of our grieving will be solitary and some of it shared. Lets acknowledge what we've lost by mourning together.
Please dont try to make my decisions for me. If you see me wearing down and think I should rest, I value your observations and suggestions, but dislike being told what I should do. I need to take care of myself and you can help, but dont try to take over. Your encouragement helps me to do a better job of taking care of myself.
When you acknowledge my difficulties and my strengths, I might have trouble believing what you say, but I do need to hear it. Tell me you think I'm brave, that I'm fighting hard, that I'm weathering this calamity well.Tell me you still love and value me, and why. Small tokens help - a flower, a phone call, a card.
Sometimes I may be unable to hear you or I may even push you away when I'm hurting, especially at times when I cant love myself. I'll try not to hurt you, but if I do, please understand that Idont mean to reject you.
I know our sexual relationship has changed and that we both miss the way it was. My lack of energy and sexual interest is a result of my illness and not a rejection of you. I need to remain close with you in every possible way. Hugs are comforting and reassuring to me.
These are rough times for us. I appreciate the efforts you've made to help me cope and to be comfortable. I know I've been difficult to live with. At times you have been too. If we can get through these times together, our relationship will become stronger.
*From Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, PhD
Please understand that I am going through a horrible ordeal. I feel terrible about inflicting my illness on you. I know that you're affected by my changes, and I wish it were otherwise. I dont want to be ill.
I feel guilty about my inability to shoulder former responsibilities at work and at home, dumping more on you. I wish I could do more or know in advance what I will be capable of each day. I worry that you'll think Im lazy or trying to dodge responsibilities I dislike, but thats not it. Sometimes I just cant, and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.
I want to know that I can trust you and that you will be available to listen and try to understand. And Ill try to understand that you cant always be available.
At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is part of my illness, and I'll try to keep it under control. I dont mean to direct the anger and frustration at you, but I will sometimes fail. If my mood swings become too hard to take and you feel ready to explode, please tell me so, gently. Maybe one of us can leave the scene, and we can talk about it later when we're both calmer.
Sometimes I need to talk about these irrational feelings. Just listen, okay? Please dont tell me how to feel or how not to feel. You can't "fix" my feelings. Please dont judge them; just accept and acknowledge them. When you say such things as, "your illness must be terribly frustrating for you," I feel understood and comforted. But dont tell me you know how I feel. You dont and you cant; no one can know exactly what this is like for me. And when I cry, dont try to make me stop. Please let me cry - I'll feel better later.
I know I complain a lot. It helps to relieve tension. If my complaining strains your tolerance, please tell me so. I wont like hearing it, and may not handle it well, but I really do understand that you need to distance yourself from my complaints.
I need to work at making clear requests so that you'll know what I need. It's not your job to mind-read - its my responsibility to ask for what I want. This is difficult for me; its easier for me to meet others' needs than to admit my own and ask that they be met.
Dont try to talk me out of my symptoms or remind me that they're not as bad as they could be or not as bad as they were. I know I need to stay hopeful, but if you take an optimistic role when Im feeling pessimistic, I feel as if you dont understand me and wont validate my feelings.
I know you dont understand why Im sick. Neither do I. Lets stay away from blame and acknowledge our feelings of helplessness.
Dont give up your whole life for me. Please continue to do the things that are important to you. I wont always be able to do them with you, so do them alone or with a friend. Sometimes I resent my limitations and your freedom, but I'll try to keep a healthy perspective. If you put your life on hold because of my illness, I'll feel guilty and your resentment will build. I appreciate your invitations to do things as a reminder that you still value my company. Please dont assume what I can or can't do; ask, and I'll answer you honestly. I hope you will understand that when I say "no," its not because I dont want to but because I can't or shouldn't.
I know I'm not the way I used to be. I'm trying to learn from my illness, from these changes, and you can help. We can't pretend that things are the way they were or that they'll ever be the same again. But as we change and grow, I want us to grow together rather than apart. Lets keep the lines of communication open. When I need to withdraw, I'll try to let you know so you wont take it personally. Please do the same for me. Don't just pull away; explain to me that you need distance temporarily so I'm less inclined to feel abandoned.
Because we're both experiences losses, we need to grieve. Some of our grieving will be solitary and some of it shared. Lets acknowledge what we've lost by mourning together.
Please dont try to make my decisions for me. If you see me wearing down and think I should rest, I value your observations and suggestions, but dislike being told what I should do. I need to take care of myself and you can help, but dont try to take over. Your encouragement helps me to do a better job of taking care of myself.
When you acknowledge my difficulties and my strengths, I might have trouble believing what you say, but I do need to hear it. Tell me you think I'm brave, that I'm fighting hard, that I'm weathering this calamity well.Tell me you still love and value me, and why. Small tokens help - a flower, a phone call, a card.
Sometimes I may be unable to hear you or I may even push you away when I'm hurting, especially at times when I cant love myself. I'll try not to hurt you, but if I do, please understand that Idont mean to reject you.
I know our sexual relationship has changed and that we both miss the way it was. My lack of energy and sexual interest is a result of my illness and not a rejection of you. I need to remain close with you in every possible way. Hugs are comforting and reassuring to me.
These are rough times for us. I appreciate the efforts you've made to help me cope and to be comfortable. I know I've been difficult to live with. At times you have been too. If we can get through these times together, our relationship will become stronger.
*From Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, PhD
Tuesday, November 13, 2012
Meeting a Potential Ring Leader...
I'm heading in to meet a new Primary Care Physician today. I'm really really hopeful that this will be the beginning of a great relationship. I contacted the rheumatologist that was previously recommended, but he's not accepting new patients until February 2013. I'm just hoping that she will be willing to help be my ring leader. I'm trying to compile a list of all my symptoms and issues and see if she can help with connecting the dots. Fingers are crossed! I'm sure I'll update later with how it went.
I also contacted my insurance company and they will cover my silver ring splints 80%. So that has saved a TON of money! Hoping to get those ordered and shipped asap! Since the weather has taken a turn for the colder, I've been in more pain lately.
I'm also contacting a lawyer to discuss social security disability benefits. Its worth a shot to at least talk about it. I can't do massage any more. I can't type effectively with one hand, nor can I do filing. Kinda makes my 2 career backgrounds obsolete. Looking into additional careers that don't involve your hands is HARD. So far I'm looking into energy work - reiki, craniosacral, etc. My OT's also suggested becoming a COTA (certified occupational therapist assistant) as they said I have the right personality for it, and the money is good. I'll look into it. :) I just don't know what to do in the meantime...
I also contacted my insurance company and they will cover my silver ring splints 80%. So that has saved a TON of money! Hoping to get those ordered and shipped asap! Since the weather has taken a turn for the colder, I've been in more pain lately.
I'm also contacting a lawyer to discuss social security disability benefits. Its worth a shot to at least talk about it. I can't do massage any more. I can't type effectively with one hand, nor can I do filing. Kinda makes my 2 career backgrounds obsolete. Looking into additional careers that don't involve your hands is HARD. So far I'm looking into energy work - reiki, craniosacral, etc. My OT's also suggested becoming a COTA (certified occupational therapist assistant) as they said I have the right personality for it, and the money is good. I'll look into it. :) I just don't know what to do in the meantime...
Thursday, October 25, 2012
Relief and Frustration
Relief - I do not have any of the other markers for Lupus, so that potential diagnosis is out. PHEW.
Frustration - There is nothing they can do regarding my joint instability syndrome. I just have to deal. I can continue to have surgeries that don't hold, or they can fuse my joints so they are no longer an issue, and that is it. No medications to slow it down, and they really don't know much of anything about it.
But I have my dietary focus now, so that is great news. And the Rheum wrote me a script for strictly pool work physical therapy. I asked the doc how he felt about a change in lifestyle and going 100% gluten free (I mentioned some of the research I had done) and he was completely supportive of me trying that avenue. "There have been reports of many people having great success managing their fibro pain and fatigue by cutting out gluten. I say give it a shot! It certainly won't hurt anything, thats for sure!"
So there I have it - an endorsement to take my health and well being into my own hands by a medical professional.
Turns out my Occupational Therapist is gluten free, can free, plastic free, pastured grass fed animal consuming, and raw milk drinking. 2 people in the last week have recommended the GAPS book to me, so I think I'll give it a look. It also turns out that a girl I went to middle school and high school with is a nutritional goddess and is very open to talking about health and wellness. My mom is going to go to the gluten free classes with me and she is looking into how much a membership is for us to use the pool at the local YMCA. I feel like all the puzzle pieces are falling into place to get this done right - and to be fully supported by family and friends. :-D
Frustration - There is nothing they can do regarding my joint instability syndrome. I just have to deal. I can continue to have surgeries that don't hold, or they can fuse my joints so they are no longer an issue, and that is it. No medications to slow it down, and they really don't know much of anything about it.
SO FRUSTRATING.
But I have my dietary focus now, so that is great news. And the Rheum wrote me a script for strictly pool work physical therapy. I asked the doc how he felt about a change in lifestyle and going 100% gluten free (I mentioned some of the research I had done) and he was completely supportive of me trying that avenue. "There have been reports of many people having great success managing their fibro pain and fatigue by cutting out gluten. I say give it a shot! It certainly won't hurt anything, thats for sure!"
So there I have it - an endorsement to take my health and well being into my own hands by a medical professional.
Turns out my Occupational Therapist is gluten free, can free, plastic free, pastured grass fed animal consuming, and raw milk drinking. 2 people in the last week have recommended the GAPS book to me, so I think I'll give it a look. It also turns out that a girl I went to middle school and high school with is a nutritional goddess and is very open to talking about health and wellness. My mom is going to go to the gluten free classes with me and she is looking into how much a membership is for us to use the pool at the local YMCA. I feel like all the puzzle pieces are falling into place to get this done right - and to be fully supported by family and friends. :-D
Tuesday, October 23, 2012
Food 102
I got home from my nutrition class about an hour ago and I am still SO excited about the changes that will be made in our household.
Todays class focused on how to blend this lifestyle into your current one. Again, Lisa did not disappoint with handouts that I can share with family and friends. I'm so excited to learn more. Its strange, I felt really connected to Lisa today... like the information she was sharing I just wanted to absorb and immediately share with others. Maybe once I've switched over our household and gained first hand results of wellness, teaching others might be in my future? I do love sharing information with others...
Take today for example: I got a ride to Whole Paycheck from my BFF. We are still down to one car, which makes simple tasks trying, but I digress. I had such a great time walking around the store with her, sharing what info I'd been learning. We talked about "organic cage-less" vs "pastured" eggs, the difference in nutritional value, and the cost of investing in your health.
Cost is a big stumping factor for most people. They way I look at it, I'm sitting on $5k of medical bills from AUGUST - PRESENT ALONE. $5,000 is a LOT of money!!! Thats an additional $96 a WEEK that I could be investing in better quality foods for my family that may reverse my pain and disability and keep my children safe from ever having to face this themselves.
Todays class focused on how to blend this lifestyle into your current one. Again, Lisa did not disappoint with handouts that I can share with family and friends. I'm so excited to learn more. Its strange, I felt really connected to Lisa today... like the information she was sharing I just wanted to absorb and immediately share with others. Maybe once I've switched over our household and gained first hand results of wellness, teaching others might be in my future? I do love sharing information with others...
Take today for example: I got a ride to Whole Paycheck from my BFF. We are still down to one car, which makes simple tasks trying, but I digress. I had such a great time walking around the store with her, sharing what info I'd been learning. We talked about "organic cage-less" vs "pastured" eggs, the difference in nutritional value, and the cost of investing in your health.
Cost is a big stumping factor for most people. They way I look at it, I'm sitting on $5k of medical bills from AUGUST - PRESENT ALONE. $5,000 is a LOT of money!!! Thats an additional $96 a WEEK that I could be investing in better quality foods for my family that may reverse my pain and disability and keep my children safe from ever having to face this themselves.
If that isn't an eye opener, I don't know what is.
Monday, October 22, 2012
Stalemate...
I had an appointment with the surgeon this morning and it appears we have reached a stalemate. My surgery has basically undone itself already (damn) and she said it would be pointless to attempt another soft tissue reconstruction as my body would just tear it all apart again anyways. She said she wants to wait to see what the rheumatologist says on Thursday before we move forward. She is hoping they will put me on some kind of "biological medication" that will slow down my body's tendency to attack itself. After we get that figured out, we can move forward. Otherwise, she said she would have to fuse the bones in my wrist, and I would basically have to decide what motions I would be willing to give up: either flipping my hand over, or extension/flexion of the wrist.
Not exactly what I wanted to hear, by any means.
SO! Now is as good a time as any to get me back on track from the inside out. To see what I can help/reverse by taking care of myself and really pushing my family to accept the nutritional changes I want to see happen. When the surgeon said "biological medicine" a little trumpet went off in my brain - I can affect my biology through diet. Now, thats not to say that I will refuse medication. I'm falling apart - literally. I need to get that crap under control NOW. But I also know that once I get on a medication to stabilize my weirdness, I may be able to wean myself off should I also get all of the shit out of my diet too. Heal myself from the inside out.
Its worth a shot. It certainly couldn't get much worse...
Not exactly what I wanted to hear, by any means.
SO! Now is as good a time as any to get me back on track from the inside out. To see what I can help/reverse by taking care of myself and really pushing my family to accept the nutritional changes I want to see happen. When the surgeon said "biological medicine" a little trumpet went off in my brain - I can affect my biology through diet. Now, thats not to say that I will refuse medication. I'm falling apart - literally. I need to get that crap under control NOW. But I also know that once I get on a medication to stabilize my weirdness, I may be able to wean myself off should I also get all of the shit out of my diet too. Heal myself from the inside out.
Its worth a shot. It certainly couldn't get much worse...
Thursday, October 18, 2012
Food 101 - You Are What You Eat
Having allowed myself a little wallow time, I feel remarkably inspired to get down and dirty with how I can do something about what is happening to me. I've decided to focus on diet. I've always had a bit of a food obsession to begin with (bulemia in my teens/early twenties) and I've tried more than once to do a diet overhaul. I've had 2 factors that always lead to their failure. 1) I didn't completely buy into what they were saying - Yes, a plant-based diet does have many many health benefits... but lets be honest here, I like how tush (animal products) taste. I just don't like how animal products are jam packed with hormones, pesticides, antibiotics... and don't get me started on the treatment of those poor souls. 2) Crappy support. So does this mean I can never eat meat or drink milk ever again??
Thankfully, the answer is no. I don't have to give these things up!
I went to a nutritional class on Tuesday with my mom called "One plate at a time: Eating to beat diabetes, inflammatory disease, and cancer" lead by Lisa (The Cultured Cook). She was AMAZING. I seriously can't wait for next weeks class!! Not only that, but she has a course on gluten-free living coming up next month... I can't wait!! But I digress...
In the class we talked about how diabetes and disease reek havok in the body. We only lightly touched on inflammatory diseases, but the following information was more than amazing. We talked about how the body processes what we eat and how we can directly effect our health with our diet. Omega 3's are anti-inflammatory. They are found in high concentrations in green grass. Humans do not produce Omega 3's, nor can we digest grass. So how the heck are we supposed to get these amazing little powerhouses into our systems? By consuming something that consumes the grass! Lisa then introduced the idea that "organic" milk only means no hormones and no pesticides were used in the cows feed or injected into their bodies... but those cows are typically grain fed, not pasture grass fed...
The old atteche "you are what you eat" is true. But you are also what the thing you're eating has been eating.
For a warm fuzzy example of this in nature: Brine shrimp eat red algae. Brine shrimp are pink. Flamingo's eat brine shrimp. Flamino's are... Pink! Flamingo's kept in captivity that are fed a shrimp alternative are... White! See? You are what you eat. ;)
Now for the less fuzzy example... Store bought chicken. Those chicken are fed corn (sprayed with pesticides), corn meal, bone meal (from other chickens, mind you), and chicken litter (ground up chicken parts, feathers, feces, and corn meal that has fallen on the ground). It's enough to make you sick, isnt it? The chickens too, so they are given an antibiotic to keep infection and disease to a minimum. And since those poor souls can't sustain life in those conditions for long, they are given growth hormone to speed up their growth rate so they can be slaughtered before dying from disease.
Yum yum. Dish me up a plate of THAT.
So I have decided no more regular old store bought meats, eggs and milk. I'm done with that. No thank you!
Last week I purchased an 1/8 of a pasture grass fed cow. I currently have just over 50 lbs of assorted cuts of meat in my upright freezer. That should last me a little while. I'm also joining a co-op for my milk, eggs, and poultry. These are all pastured, grass fed animals. Oh, and no antibiotics or growth hormones for these bad boys. The milk is raw whole milk. I know, I know, poo poo me on that one... but is your milk full of Omega 3's? Nope! They've been cooked right out with pastuerization, along with a slew of other vitamins and minerals. Is it a little pricey? Sure... but so are all these freakin medical bills!! If you're in the Metro Detroit Area, check out Family Farms Cooperative We are talking SUPER reasonable not to mention supporting local Michigan farmers. I'm also doing away with canned veggies and plastic bottles for my milk storage... More on that later. ;-)
I'm excited!! :-D
Fun fact for the day: Did you know that if you buy 1 gallon of whole milk and split it between 2 seperate gallon jugs and fill to the brim with water, you now have 2 gallons of 2% milk?? How's that for stretching a dollar??
Thankfully, the answer is no. I don't have to give these things up!
I went to a nutritional class on Tuesday with my mom called "One plate at a time: Eating to beat diabetes, inflammatory disease, and cancer" lead by Lisa (The Cultured Cook). She was AMAZING. I seriously can't wait for next weeks class!! Not only that, but she has a course on gluten-free living coming up next month... I can't wait!! But I digress...
In the class we talked about how diabetes and disease reek havok in the body. We only lightly touched on inflammatory diseases, but the following information was more than amazing. We talked about how the body processes what we eat and how we can directly effect our health with our diet. Omega 3's are anti-inflammatory. They are found in high concentrations in green grass. Humans do not produce Omega 3's, nor can we digest grass. So how the heck are we supposed to get these amazing little powerhouses into our systems? By consuming something that consumes the grass! Lisa then introduced the idea that "organic" milk only means no hormones and no pesticides were used in the cows feed or injected into their bodies... but those cows are typically grain fed, not pasture grass fed...
The old atteche "you are what you eat" is true. But you are also what the thing you're eating has been eating.
For a warm fuzzy example of this in nature: Brine shrimp eat red algae. Brine shrimp are pink. Flamingo's eat brine shrimp. Flamino's are... Pink! Flamingo's kept in captivity that are fed a shrimp alternative are... White! See? You are what you eat. ;)
Now for the less fuzzy example... Store bought chicken. Those chicken are fed corn (sprayed with pesticides), corn meal, bone meal (from other chickens, mind you), and chicken litter (ground up chicken parts, feathers, feces, and corn meal that has fallen on the ground). It's enough to make you sick, isnt it? The chickens too, so they are given an antibiotic to keep infection and disease to a minimum. And since those poor souls can't sustain life in those conditions for long, they are given growth hormone to speed up their growth rate so they can be slaughtered before dying from disease.
Yum yum. Dish me up a plate of THAT.
So I have decided no more regular old store bought meats, eggs and milk. I'm done with that. No thank you!
Last week I purchased an 1/8 of a pasture grass fed cow. I currently have just over 50 lbs of assorted cuts of meat in my upright freezer. That should last me a little while. I'm also joining a co-op for my milk, eggs, and poultry. These are all pastured, grass fed animals. Oh, and no antibiotics or growth hormones for these bad boys. The milk is raw whole milk. I know, I know, poo poo me on that one... but is your milk full of Omega 3's? Nope! They've been cooked right out with pastuerization, along with a slew of other vitamins and minerals. Is it a little pricey? Sure... but so are all these freakin medical bills!! If you're in the Metro Detroit Area, check out Family Farms Cooperative We are talking SUPER reasonable not to mention supporting local Michigan farmers. I'm also doing away with canned veggies and plastic bottles for my milk storage... More on that later. ;-)
I'm excited!! :-D
Fun fact for the day: Did you know that if you buy 1 gallon of whole milk and split it between 2 seperate gallon jugs and fill to the brim with water, you now have 2 gallons of 2% milk?? How's that for stretching a dollar??
Wednesday, October 3, 2012
Occupational Therapy Begins
This morning I had my initial evaluation with the occupational therapist. First visits are always boring. Basically all she did was look me over, talk about my health history, and get my current range of motion measurements. The real fun starts Friday when I go in for my first session. She did give me a packet of exercises to start today, as well as scar massage she wants me to start.
I was pretty put out by how limited my ROM is. I cant yet turn my hand over. I know I need to be patient and this is going to be a learning process, but still. The notion of a "new normal" is something I'm having a hard time with. There are just so many "new normals" I'm trying to deal with all at once. Not sure which way is up. And I'm afraid to make personal demands... To really ask that my needs be met. I have to make it to these appointments and I need to make sure that I am demanding I have a means to get there. Sucks, but I have to make it work. With only one car, makes it interesting.
Blah.
I was pretty put out by how limited my ROM is. I cant yet turn my hand over. I know I need to be patient and this is going to be a learning process, but still. The notion of a "new normal" is something I'm having a hard time with. There are just so many "new normals" I'm trying to deal with all at once. Not sure which way is up. And I'm afraid to make personal demands... To really ask that my needs be met. I have to make it to these appointments and I need to make sure that I am demanding I have a means to get there. Sucks, but I have to make it work. With only one car, makes it interesting.
Blah.
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