It's been almost two weeks without a crutch in sight! Oh, how I don't miss them. I've been holding up pretty well for the most part. The right hip gets a bit tight at times, I believe it's the psoas, so we've been stretching it more at PT.
I had the injection on my left hip on Friday. I hate the procedure, it's not pleasant at all, but at least it's over. I had a difference in pain from the pre-injection to the post-injection, especially rotating my hip inwards. That was a 10+ before the injection, and went to about a 5 after. It was definitely sore for the following days but seems okay now.
I leave for London tomorrow night. I have taken the precaution of arranging assistance from the gate in Heathrow as the walk to immigration is quite long. I am meant to get a bulk seat as well which will be helpful in the sense no one will be able to smoosh my legs when they put their chair back. Normally I'm not a fan but in this case I'm willing to give it a try.
I've been trying to limit my plans for the trip, so just meeting up with some friends, seeing a Panto, going to the local for New Years and the biggest amount of walking will be at Hampton Court on New Years Day. I pray I can handle it, because being the Henry buff that I am, I have to see the new exhibit, as well as the Tudor Cookery special and holiday decorations they have set up. I must hit the gift shop there as well, they usually have lots of fun things for history geeks such as myself.
I am back next week and will let you now how I fared. Happy New Year and may you and those you love have a blessed 2008!
27 December, 2007
21 December, 2007
Sick Humor: Answers to But you don't look sick?!
(again, not mine but had to pass along)
Don't you wish that you had something witty to say when someone says the inevitable.. But you don't look sick?! Well now you do, Thanks to our message board members we have a WHOLE list !! Even if you feel you can't really use these answers when people ask, you can most certainly think of them and giggle.
And you look Intelligent!
And you don't look stupid!
Maybe it's Maybelline.
But I tried so hard!
Oh? You don't look like the bearer of prejudices.
We all make mistakes * Cheery Smile *
Really? That's odd!
Really? (Look down at yourself) I'm cured!!!
Where did you get my medical degree from?
For when people are are being rude- I don't look ( Insert age here) either, but it doesn't change the fact I am!
Why thank you honey, that's so sweet of you to say that!
I wasn't aware illnesses came mounted on a billboard!
Huh? What does sick look like?
There's a well person striving to escape this body!
How sweet of you to say that. I've been so tired, I haven't bathed in three days.
And I was sort of worried about going out in public looking like this. So thanks for the compliment. It's really made my day.
And I guess your X-ray vision isn't working too well today either! You should see how corroded some of my parts are on the inside. Some of my organs are in their 90's, some in their 70's. It's hard to keep track! ! !
Yeah, isn't it great. I guess I'm the healthiest looking sick person you've ever seen, huh? Isn't it weird how looks can deceive.
Yep well it's nothing to get excited about!
Well I'm NOT sick, my body is!
What do you think "Don't judge a book by it's cover" means?
Just because I look ok, doesn't mean I'm fine.
I work hard to look this good.
Are you flirting with me?
I have good and bad days, but I'll never be the way I was before I got sick.
Darn! I told Q this was the wrong host body!! I should go back to the mother ship.
This is my Alter-Ego!
Should I get a refund?
It's really good to know that the 4 hours it took me to get out of bed, and get ready this morning wasn't wasted!
Really? That's not what my psychiatrist told me.
Oh gosh I didn't realise it was you who was blind. I mean people told me but I must have gotten muddled, its the drugs you know, but wow you're coping so well.……. *continue babbling til they back away*
You should see the straight jacket they make me wear!
Thanks! Funny, knowing that i don't look sick, gives me a new appreciation and patience for the people i might meet who look healthy and may not be.
Oh yeah? Check this out (show them something freaky)
Really? Ok lets trade bodies for the day!
What exactly does (insert illness) look like?
Ignorance is bliss I guess!
Would a bit of vomit help? Because I'm feeling quiet nauseous.
I guess hard work pay off!
Well of course not, I look like (insert name here) Duh!
What is this "sick" you speak of?
Thanks! I only needed one painkiller today instead of 5!
oh good..... because "not sick" is just the look I was going for!
Don't you wish that you had something witty to say when someone says the inevitable.. But you don't look sick?! Well now you do, Thanks to our message board members we have a WHOLE list !! Even if you feel you can't really use these answers when people ask, you can most certainly think of them and giggle.
And you look Intelligent!
And you don't look stupid!
Maybe it's Maybelline.
But I tried so hard!
Oh? You don't look like the bearer of prejudices.
We all make mistakes * Cheery Smile *
Really? That's odd!
Really? (Look down at yourself) I'm cured!!!
Where did you get my medical degree from?
For when people are are being rude- I don't look ( Insert age here) either, but it doesn't change the fact I am!
Why thank you honey, that's so sweet of you to say that!
I wasn't aware illnesses came mounted on a billboard!
Huh? What does sick look like?
There's a well person striving to escape this body!
How sweet of you to say that. I've been so tired, I haven't bathed in three days.
And I was sort of worried about going out in public looking like this. So thanks for the compliment. It's really made my day.
And I guess your X-ray vision isn't working too well today either! You should see how corroded some of my parts are on the inside. Some of my organs are in their 90's, some in their 70's. It's hard to keep track! ! !
Yeah, isn't it great. I guess I'm the healthiest looking sick person you've ever seen, huh? Isn't it weird how looks can deceive.
Yep well it's nothing to get excited about!
Well I'm NOT sick, my body is!
What do you think "Don't judge a book by it's cover" means?
Just because I look ok, doesn't mean I'm fine.
I work hard to look this good.
Are you flirting with me?
I have good and bad days, but I'll never be the way I was before I got sick.
Darn! I told Q this was the wrong host body!! I should go back to the mother ship.
This is my Alter-Ego!
Should I get a refund?
It's really good to know that the 4 hours it took me to get out of bed, and get ready this morning wasn't wasted!
Really? That's not what my psychiatrist told me.
Oh gosh I didn't realise it was you who was blind. I mean people told me but I must have gotten muddled, its the drugs you know, but wow you're coping so well.……. *continue babbling til they back away*
You should see the straight jacket they make me wear!
Thanks! Funny, knowing that i don't look sick, gives me a new appreciation and patience for the people i might meet who look healthy and may not be.
Oh yeah? Check this out (show them something freaky)
Really? Ok lets trade bodies for the day!
What exactly does (insert illness) look like?
Ignorance is bliss I guess!
Would a bit of vomit help? Because I'm feeling quiet nauseous.
I guess hard work pay off!
Well of course not, I look like (insert name here) Duh!
What is this "sick" you speak of?
Thanks! I only needed one painkiller today instead of 5!
oh good..... because "not sick" is just the look I was going for!
Sick Humor: A letter from your chronic condition and a reply
(just had to post this, it's brill)
A letter from your chronic condition and a reply. Sometimes you just have to laugh!
To whom it may concern:
Congratulations! You have been selected to be the host for (any chronic condition -- RA, FM, lupus, MS, you name it). You will begin to experience many or all of these symptoms -- and may even deal with several of them at the same time.
--Pain can be anywhere you can imagine. We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain -- it could be aching, stabbing, throbbing, tingling, burning, gripping, or cramping. We are continually improving our repertoire of pain categories, so updates are to be expected.
--Dizziness. This can be accompanied by nausea, mental confusion, ringing in the ears, vomiting, loss of coordination, and sensations of spinning, rocking, or shaking. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts,ends, or how fast it goes.
--Extreme fatigue (Now remember, this is not just being "tired". We will suddenly "pull your plug", so to speak, and you will have NO energy at all. Even dressing or taking a shower will be too daunting of a task for you to complete. And because we like surprises, we will NOT give you any advance warning, so you could be in the middle of the grocery store, at work, playing with you kids, or trying to clean the house.)
--Poor balance, lack of coordination. Let's just say you may walk or talk like you are drunk -- even if you haven't had any alcohol recently. And for those of you who have never indulged in alcohol, you are now going to understand what it is like to be drunk and to have a hangover.
--Forgetting, losing, dropping things. These are just a few of the perks of your condition. You will learn to expect them, but never to enjoy them.
In addition to the symptoms above, we also want to eliminate some things from your crowded lifestyle. Here are a few of the things which will be taken away from you now that you are chosen to have a chronic condition:
The ability to stand or walk for longer than 15 minutes without experiencing pain in you feet, ankles, knees, or legs. The ability to sit for longer than 10 minutes without experience cramping in your legs and butt, or shooting pains in your back.
The ability to complete any task which requires more than 10 minutes of concentration, multi-step activities or long-term projects will take 2-3 times longer then average.
The ability to play and run with your children like you did before. The ability to have a "normal" social life. The ability to accumulate sick days at work/ school to earn the perfect attendance bonus. As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.
Sincerely,
Your chronic condition
_________________________________________________________________ Dear My chronic condition:
I would like to clarify that, while you may wreak havoc on my body, and maybe even confuse my mind -- you cannot have my heart or my soul. You cannot have my faith, my hope, or my love. There are some good things that you have given me, things I never could have experienced had you not come to possess my body.
You have given me:
-- strengthened prayer life and increased dependence on God's grace and strength, rather than my own
-- renewed friendship with strong, close, true friends.
-- appreciation for every precious moment I am given. A gift that is sometimes lost on the "healthy".
-- growth in character, perseverance, and hope.
-- inspiration for to help others.
-- more compassion for others who are suffering.
-- better knowledge of my own body & health.
-- a reason to eat more nutritiously and take care of myself.-
- reasons to rest when I need it.
You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.
Sincerely,
ME
A letter from your chronic condition and a reply. Sometimes you just have to laugh!
To whom it may concern:
Congratulations! You have been selected to be the host for (any chronic condition -- RA, FM, lupus, MS, you name it). You will begin to experience many or all of these symptoms -- and may even deal with several of them at the same time.
--Pain can be anywhere you can imagine. We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain -- it could be aching, stabbing, throbbing, tingling, burning, gripping, or cramping. We are continually improving our repertoire of pain categories, so updates are to be expected.
--Dizziness. This can be accompanied by nausea, mental confusion, ringing in the ears, vomiting, loss of coordination, and sensations of spinning, rocking, or shaking. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts,ends, or how fast it goes.
--Extreme fatigue (Now remember, this is not just being "tired". We will suddenly "pull your plug", so to speak, and you will have NO energy at all. Even dressing or taking a shower will be too daunting of a task for you to complete. And because we like surprises, we will NOT give you any advance warning, so you could be in the middle of the grocery store, at work, playing with you kids, or trying to clean the house.)
--Poor balance, lack of coordination. Let's just say you may walk or talk like you are drunk -- even if you haven't had any alcohol recently. And for those of you who have never indulged in alcohol, you are now going to understand what it is like to be drunk and to have a hangover.
--Forgetting, losing, dropping things. These are just a few of the perks of your condition. You will learn to expect them, but never to enjoy them.
In addition to the symptoms above, we also want to eliminate some things from your crowded lifestyle. Here are a few of the things which will be taken away from you now that you are chosen to have a chronic condition:
The ability to stand or walk for longer than 15 minutes without experiencing pain in you feet, ankles, knees, or legs. The ability to sit for longer than 10 minutes without experience cramping in your legs and butt, or shooting pains in your back.
The ability to complete any task which requires more than 10 minutes of concentration, multi-step activities or long-term projects will take 2-3 times longer then average.
The ability to play and run with your children like you did before. The ability to have a "normal" social life. The ability to accumulate sick days at work/ school to earn the perfect attendance bonus. As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.
Sincerely,
Your chronic condition
_________________________________________________________________ Dear My chronic condition:
I would like to clarify that, while you may wreak havoc on my body, and maybe even confuse my mind -- you cannot have my heart or my soul. You cannot have my faith, my hope, or my love. There are some good things that you have given me, things I never could have experienced had you not come to possess my body.
You have given me:
-- strengthened prayer life and increased dependence on God's grace and strength, rather than my own
-- renewed friendship with strong, close, true friends.
-- appreciation for every precious moment I am given. A gift that is sometimes lost on the "healthy".
-- growth in character, perseverance, and hope.
-- inspiration for to help others.
-- more compassion for others who are suffering.
-- better knowledge of my own body & health.
-- a reason to eat more nutritiously and take care of myself.-
- reasons to rest when I need it.
You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.
Sincerely,
ME
YAY!
I made it a whole work week without a crutch in sight. Quite an accomplishment. My left hip has started to really bother me again so I am glad that I've the injection for later today, though I must say I am not looking forward to the procedure itself. I believe I have the same doctor as last time though and he was very good. I so appreciated how he explained the procedure step by step and was constantly telling me everything about it and how it was going.
On a different note, I came across some interesting items on a message board I am on and thought I would post them. I did not write them. I will post each separately.
Also, check out this site: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
On a different note, I came across some interesting items on a message board I am on and thought I would post them. I did not write them. I will post each separately.
Also, check out this site: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
19 December, 2007
13 Week update
In honour of my thirteenth week of recovery, I decided to be brave and ditch the last crutch. Unlike most people I've had to use one for a much longer time. The idea was to keep down the inflammation in the surgical hip, and it did work. The main issue was it made my left hip very upset and inflamed.
Today is my third "official" day going sans crutch. It's been going pretty well. The main issues I've found are if I walk for a few blocks my hamstring starts to get tight and sore on the upper part, and the tendon under my right knee gets a bit irritated. My PT guys doesn't seem to concerned and I feel that the stronger I get it will work itself out. At least that's what I'm hoping. My psoas has been feeling a bit tight and we stretched it out at PT on Monday, and hopefully will do that again tonight. It's tricky for me as we don't want to overdue the stretching because of the EDS, but at the same time, it really needs to be done. I am going back to the genetic doctor in January so hopefully will get a better idea of what I should and should not be doing.
As for the left hip, it's not been too bad the last few days. Ironic as I'm getting an injection on Friday. I think it's very happy to be without the crutch and I am definitely more balanced so not putting most of my weight on it. It was pretty sore this am, but I also feel horrid and achy - it's my fibro kicking in. Sleep wasn't good for a few days and though I did fairly well the last two nights, the weather is a bit off where my body is concerned. I will have to make a concerted effort to get some good sleep in before I leave for London next week, as I don't want to start the trip off like this - the flight itself will be a challenge.
I am a bit nervous about the injection. I want it to make the pain go away, but at the same time, if it works, that means I will most likely need surgery. I am in no mental state to be able to handle that again, but at the same time I do want to get it over with so I can get on with my life. Ok, I'm not going to think about that now. As Scarlett says, tomorrow is another day...
Today is my third "official" day going sans crutch. It's been going pretty well. The main issues I've found are if I walk for a few blocks my hamstring starts to get tight and sore on the upper part, and the tendon under my right knee gets a bit irritated. My PT guys doesn't seem to concerned and I feel that the stronger I get it will work itself out. At least that's what I'm hoping. My psoas has been feeling a bit tight and we stretched it out at PT on Monday, and hopefully will do that again tonight. It's tricky for me as we don't want to overdue the stretching because of the EDS, but at the same time, it really needs to be done. I am going back to the genetic doctor in January so hopefully will get a better idea of what I should and should not be doing.
As for the left hip, it's not been too bad the last few days. Ironic as I'm getting an injection on Friday. I think it's very happy to be without the crutch and I am definitely more balanced so not putting most of my weight on it. It was pretty sore this am, but I also feel horrid and achy - it's my fibro kicking in. Sleep wasn't good for a few days and though I did fairly well the last two nights, the weather is a bit off where my body is concerned. I will have to make a concerted effort to get some good sleep in before I leave for London next week, as I don't want to start the trip off like this - the flight itself will be a challenge.
I am a bit nervous about the injection. I want it to make the pain go away, but at the same time, if it works, that means I will most likely need surgery. I am in no mental state to be able to handle that again, but at the same time I do want to get it over with so I can get on with my life. Ok, I'm not going to think about that now. As Scarlett says, tomorrow is another day...
15 December, 2007
sometimes you feel like a nut...
which has been a rare case around here lately. So...today being a day I needed to sort out my head, I put on my most favourite, the loveliest band in the whole universe. (Depeche for those of the unknowing ones). I didn't just put on their music, I really needed that extra umph to get me going, so I put on the dvd of their last tour, Touring the Angel (which I must say was one of their best ever!) So as I took a shower, made my matzoh brei and ate it, I slowly got into the music. After I dried my hair, some of their more rocking and dancing songs came on (for those of the disbelieving ones, trust me, Dave can really get down in concert) and I was just swept away. My left hip hadn't started hurting for the day, and my right was doing ok, and the next thing I realised was that I was dancing around the living room letting go of everything and just enjoying the moment. I actually felt normal, well, until after a couple of songs I could barely breathe - all that congestion is still there. But still, it was COMPLETELY BRILLIANT!!! I have not felt like a "normal" person in so long, and whilst I knew I was misbehaving incredibly and would pay for it later, I DID NOT CARE! (I will have to re-read this when I can barely walk because then I'll be thinking I should have really cared). Anyway, I can't really describe how this felt, (well I can, back hurts, hips are being iced, probably subluxated a shoulder) but it was just incredible. And it worked mentally because whatever was going on up there earlier is now gone.
Depeche Mode is officially my cure all. Oops, Martin is now singing Shake the Disease, my most favourite, so must run...
Depeche Mode is officially my cure all. Oops, Martin is now singing Shake the Disease, my most favourite, so must run...
12 December, 2007
12 weeks post op
It's never a dull moment in Tricia's world, that's for sure. I came down with a lovely cold or something last week, and it has decided it is so fond of me it doesn't want to move on. We are now trying antibiotics as a form of eviction. I hope they work.
As for my hips. The right one is good, I haven't been moving around too much since I've not been feeling well so it's hard to tell. The left hip has been touch and go and last week we didn't do any leg lifts with it. I've started to do them the last couple of days at home and so far so good. But again, I've not been walking much so it's hard to suss out exactly what triggers what pain.
The good news is that Dr. Kelly said I can get an injection into my left hip! I am going on the 21st, with the hope (and a prayer) that it will work like last time and keep me pain free for at least 3-4 weeks so I can enjoy my trip to London. I'm not looking forward to the process again as it hurt a lot last time, but I've got to try something.
Fingers crossed it works!!!
As for my hips. The right one is good, I haven't been moving around too much since I've not been feeling well so it's hard to tell. The left hip has been touch and go and last week we didn't do any leg lifts with it. I've started to do them the last couple of days at home and so far so good. But again, I've not been walking much so it's hard to suss out exactly what triggers what pain.
The good news is that Dr. Kelly said I can get an injection into my left hip! I am going on the 21st, with the hope (and a prayer) that it will work like last time and keep me pain free for at least 3-4 weeks so I can enjoy my trip to London. I'm not looking forward to the process again as it hurt a lot last time, but I've got to try something.
Fingers crossed it works!!!
06 December, 2007
11 week post op update
Yes I am late again, but that's because I didn't go to PT on Monday. To be honest, I did not go Wednesday last either. I was letting some semblance to a social life start to creep in again.
So, last week, after PT on Monday, where we did leg lifts with NO weights, I still ended up in agony for a few days after. This is really getting old. And boring.
For the most part when I walk around I am okay on my right side. The right can get a little unhappy if I do much walking, but I am starting to think that is because I am leaning on it more than my left because my left is hurting so much. I try to ice when this occurs.
Yesterday am I woke up with horrible pain in my left hip. I was so uncomfortable that I rang Dr. Kelly's office and left a message. I have been thinking that since PT is so difficult on that side, and my leg is clearly getting weaker (it's weaker than my right now), some sort of evasive action needs to be taken. Other than this inhibiting me from walking more and seeing how I do without the crutches, and making my right side get irritated, it's most importantly going to ruin my trip to London in a few weeks! I can't have that. I discussed with my PT guy all of this last night and he agreed with everything I was saying, and said that (the dreaded) injection may be a good idea. For those of you that do not know me well, I absolutely dread the thought of putting that poisonous rubbish in my body. But...(there's always a but) it did work from 3-4 weeks on my right hip over the summer, and if I can somehow be fortunate enough to have it done and it works whilst I'm in London, I'll be a much happier person. Also it will help me take the pressure on my not-to-be-abused right hip.
I heard back from Dr. Kelly's office today. Arianne went on holiday so it was some person I don't know which meant going through the whole song and dance about what has been going on. (It's been short of a few days from a year since I first saw Dr. Kelly). I filled her in on all of my left legs loveliness (ie my IT band pops constantly and pain is more so on the outside of the hip), and she said that she thinks an injection might be something Dr. Kelly would want to do, even though I've not had an MRI yet on the leg. She was going to speak to him and would ring me back either tonight or tomorrow.
So, there we are. Oh, and to add to the fun, I think I've caught either a very bad cold or the flu. Ain't life grand? Still, off to see Tom Stoppard's "Rock n Roll" tonight, so perhaps that will cure me???
Happy Hanukkah!!!
So, last week, after PT on Monday, where we did leg lifts with NO weights, I still ended up in agony for a few days after. This is really getting old. And boring.
For the most part when I walk around I am okay on my right side. The right can get a little unhappy if I do much walking, but I am starting to think that is because I am leaning on it more than my left because my left is hurting so much. I try to ice when this occurs.
Yesterday am I woke up with horrible pain in my left hip. I was so uncomfortable that I rang Dr. Kelly's office and left a message. I have been thinking that since PT is so difficult on that side, and my leg is clearly getting weaker (it's weaker than my right now), some sort of evasive action needs to be taken. Other than this inhibiting me from walking more and seeing how I do without the crutches, and making my right side get irritated, it's most importantly going to ruin my trip to London in a few weeks! I can't have that. I discussed with my PT guy all of this last night and he agreed with everything I was saying, and said that (the dreaded) injection may be a good idea. For those of you that do not know me well, I absolutely dread the thought of putting that poisonous rubbish in my body. But...(there's always a but) it did work from 3-4 weeks on my right hip over the summer, and if I can somehow be fortunate enough to have it done and it works whilst I'm in London, I'll be a much happier person. Also it will help me take the pressure on my not-to-be-abused right hip.
I heard back from Dr. Kelly's office today. Arianne went on holiday so it was some person I don't know which meant going through the whole song and dance about what has been going on. (It's been short of a few days from a year since I first saw Dr. Kelly). I filled her in on all of my left legs loveliness (ie my IT band pops constantly and pain is more so on the outside of the hip), and she said that she thinks an injection might be something Dr. Kelly would want to do, even though I've not had an MRI yet on the leg. She was going to speak to him and would ring me back either tonight or tomorrow.
So, there we are. Oh, and to add to the fun, I think I've caught either a very bad cold or the flu. Ain't life grand? Still, off to see Tom Stoppard's "Rock n Roll" tonight, so perhaps that will cure me???
Happy Hanukkah!!!
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