I'm writing on behalf of Shannon. Who is "I'm?" I'm is Graham, the ticked-off husband of Shannon. Ticked off at this bloody-awful disease that has engulfed Shannon - engulfed our family.
At the moment - moment being the last three days, she's been on the couch. She can not effectively walk (Avery saw her walk this morning, and burst into tears), her breathing is difficult, and is extremely laboured if she sits upright. Since breathing is a fairly important function to maintain, she has been confined to the couch until I can carry her up to bed. She also describes her internal organs feel like they've been ripped out, turned inside out, and set on fire. I might add that her joints are painful and swollen.
Needless to say, I don't really know what else to say. Well, other than please pray for my wife! She's very discouraged, and it's difficult to see my beloved in this state. We know that these episodes are all part of the healing process - and we can expect them, but it's not pleasant going through them.
We can probably attribute her current state to the detox stuff we brought back from last week's visit to Dr. H. He did mention her body was a cesspool of neurotoxins, and so now that they are being ordered to leave, they're doing the Al Qaeda thing - blowing stuff up as they go.
But wait there's more! Yesterday I discovered my extended medical doesn't cover the IV supplies which are needed to infuse the IV medications (which they do cover!). So now we are attempting to creatively come up with a solution that will hopefully cost less than the $517 per month we're currently forking out over and above all the supplements and associated expenses. While it is a concern, I'm decidedly not panicked because...
...our God is a great God, and it is He who has been creatively and lovingly taking care of us. And I know He will continue to do so.
Thank you for those of you who are holding us close.
By His Grace,
Graham
September 24, 2008
September 20, 2008
STARTING THE DETOX
We're home - got home late last night.
Today I started the detox program that Dr H has prescribed.
Currently, I'm not sure whether I want to hug or slug Dr H. Probably a good thing that I'm back in Canada!
I have spent most of the day in the bed exhausted and feeling simply horrible. To be fair I probably can't really blame the detox meds as we're starting with miniscule amounts.
I am probably just paying the price for my jet set life. Ha!
Anyhow, not a lot to say.
I'm pretty worn out.
And I'm feeling pretty old - my son is turning 16 in 2 days!
Today I started the detox program that Dr H has prescribed.
Currently, I'm not sure whether I want to hug or slug Dr H. Probably a good thing that I'm back in Canada!
I have spent most of the day in the bed exhausted and feeling simply horrible. To be fair I probably can't really blame the detox meds as we're starting with miniscule amounts.
I am probably just paying the price for my jet set life. Ha!
Anyhow, not a lot to say.
I'm pretty worn out.
And I'm feeling pretty old - my son is turning 16 in 2 days!
September 19, 2008
HAVE BUNGEE, WILL TRAVEL
We're packing up and heading home today.
Which won't take long given that we had to pack really light. We took two carry on suitcases with us - and one was completely filled with all my IV meds and supplies.
Of course my IV pole didn't fit in my suitcase so we had to use a little creative ingenuity. I have been tethered to a bungee cord for 4 hours a day while here.
It'll be good to get home - we've missed our kids!
We're not used to so much peace and quiet.
We are incredibly grateful to my folks and Graham's mom for staying with the kids and keeping things running so smoothly at home this week.
They willingly relinquished the peace and quiet of their lives this week and for that we are so appreciative.
Which won't take long given that we had to pack really light. We took two carry on suitcases with us - and one was completely filled with all my IV meds and supplies.
Of course my IV pole didn't fit in my suitcase so we had to use a little creative ingenuity. I have been tethered to a bungee cord for 4 hours a day while here.
Have Bungee, Will Travel.
It'll be good to get home - we've missed our kids!
We're not used to so much peace and quiet.
Sunset at Half Moon Bay
We are incredibly grateful to my folks and Graham's mom for staying with the kids and keeping things running so smoothly at home this week.
They willingly relinquished the peace and quiet of their lives this week and for that we are so appreciative.
September 18, 2008
UNIQUE SITINGS IN PALO ALTO
I am feeling a lot better today so we decided to take in some of the local sites that are in and around Redwood City and Palo Alto.
Before we set off for our little driving tour, we needed to swing by Dr H's office to pick up some med supplies. I am slow to get going in the morning and our timing happened to coincide with the lunch hour, so we got there, just as Dr H was leaving for lunch. (Actually, relieved to see the guy actually takes a break - he looks so tired out!)
When he saw us he wanted to know what we were doing there AGAIN!
My quick thinking husband quipped, "Oh we're here to take you out for lunch!"
Oh man you should have seen the expression on his face!
It was priceless!
In fact, we were so entertained by it, we're thinking we might just pop by again tomorrow at lunch time!
After having a good laugh at Dr H's expense and hearing from Anthony that he's checked out my blog and is still blushing, we set off to check out Palo Alto to check out the Igenex Lab.
I have a definate warm fuzzy feeling for this lab. Anyone with LD will understand what I mean.
After checking out Igenex and having a nice little chat with one of the employees there, we took a little driving tour of Palo Alto. It was then that we discovered that there are some strange and unique things to be found in Palo Alto and surrounding area.
We ended off the day with dinner at a Sushi Restaurant. That was a strange experience as well. Upon first entering the restaurant, it initially appeared very traditionally Japanese, complete with several little bridges spanning coi fish ponds. However, upon closer examination, we noticed the walls were made of logs and there were taxidermied Canadian Geese hanging from the ceiling and ducks peering creepily from the rafters.
We're kicking ourselves for not having taken a few pictures.
It was a fitting end to a strangely entertaining day.
Before we set off for our little driving tour, we needed to swing by Dr H's office to pick up some med supplies. I am slow to get going in the morning and our timing happened to coincide with the lunch hour, so we got there, just as Dr H was leaving for lunch. (Actually, relieved to see the guy actually takes a break - he looks so tired out!)
When he saw us he wanted to know what we were doing there AGAIN!
My quick thinking husband quipped, "Oh we're here to take you out for lunch!"
Oh man you should have seen the expression on his face!
It was priceless!
In fact, we were so entertained by it, we're thinking we might just pop by again tomorrow at lunch time!
After having a good laugh at Dr H's expense and hearing from Anthony that he's checked out my blog and is still blushing, we set off to check out Palo Alto to check out the Igenex Lab.
I have a definate warm fuzzy feeling for this lab. Anyone with LD will understand what I mean.
After checking out Igenex and having a nice little chat with one of the employees there, we took a little driving tour of Palo Alto. It was then that we discovered that there are some strange and unique things to be found in Palo Alto and surrounding area.
We ended off the day with dinner at a Sushi Restaurant. That was a strange experience as well. Upon first entering the restaurant, it initially appeared very traditionally Japanese, complete with several little bridges spanning coi fish ponds. However, upon closer examination, we noticed the walls were made of logs and there were taxidermied Canadian Geese hanging from the ceiling and ducks peering creepily from the rafters.
We're kicking ourselves for not having taken a few pictures.
It was a fitting end to a strangely entertaining day.
September 17, 2008
SPENDING TIME WITH MARIE
It's been a difficult day on many fronts.
Physically, I am not doing well at all right now. Last night I had another gall bladder attack and then spent a sleepless night due to intense joint pain and stiffness, arrhythmias and a plethora of other symptoms. Needless to say this morning was pretty rough and I wasn't able to get out of our hotel room until mid afternoon. We had plans to drive into Half Moon Bay today to see the McQuhae family. I really wanted to see Marie and spend time with her so we set off for a little visit as soon as I could get up and moving.
Both Graham and I were glad that we could go and spend a couple of hours with Jay, Susan and Marie. Marie and I spent several hours lying in bed together laughing and crying. And talking about God and the challenge of persevering in your faith in the face of this heinous, never ending disease. Marie is still in such rough shape and I hurt for her. I hurt for her parents and the darkness of their situation.
I have done a lot of crying today. I am both physically and emotionally exhausted.
It's been a difficult yet good day.
Sometimes hope and despair can become so intricately intertwined it is difficult to seperate one from the other.
Some days I am overwhelmed with the depravity of this disease.
Today, was one of those days.
Physically, I am not doing well at all right now. Last night I had another gall bladder attack and then spent a sleepless night due to intense joint pain and stiffness, arrhythmias and a plethora of other symptoms. Needless to say this morning was pretty rough and I wasn't able to get out of our hotel room until mid afternoon. We had plans to drive into Half Moon Bay today to see the McQuhae family. I really wanted to see Marie and spend time with her so we set off for a little visit as soon as I could get up and moving.
Both Graham and I were glad that we could go and spend a couple of hours with Jay, Susan and Marie. Marie and I spent several hours lying in bed together laughing and crying. And talking about God and the challenge of persevering in your faith in the face of this heinous, never ending disease. Marie is still in such rough shape and I hurt for her. I hurt for her parents and the darkness of their situation.
I have done a lot of crying today. I am both physically and emotionally exhausted.
It's been a difficult yet good day.
Sometimes hope and despair can become so intricately intertwined it is difficult to seperate one from the other.
Some days I am overwhelmed with the depravity of this disease.
Today, was one of those days.
September 16, 2008
DR H AND HIS CHAIR
My appointment with Dr H was at 1:30pm today.
I was in bed until noon resting and trying to reserve my energy and brain power for my appointment.
The appointment went well. I faded about half way through it but we were able to cover a lot of ground during it. Both Graham and I really like Dr H and even have some fun with him.
He's a great guy and a super smart doctor even though he slouches like a teenager when sitting in his chair.
Graham took some pics of me and Dr H today - however Dr H asked that we not publicly show his picture as he was having a bad hair day.
His chair wasn't nearly as self conscious though. It happily posed for a public photo op.
And of course, I can't forget Anthony. Even though he didn't venture out from behind his little window today, it was still great to see him.
And make him giggle. And pay him a lot of money. He laughs. We cry!
It will take about a week to get Dr H's full medical assessment.
But here is the low down on what we discussed today and our game plan for the next phase of treatment.
I am making progress. Yes, it's slow but that is to be expected - fighting Lyme is a marathon not a sprint. Dr H believes that it will take about another 9-12 months just to get me functioning at about half my normal pre-Lyme capacity.
I will continue on the same IV meds and can expect to be on them for at least another 6 months.
We will also be moving forward with other aspects of treatment -
My endocrine system and adrenal glands have taken a pretty big hit. I need to have some testing done on these systems. As well, he has prescribed some meds to support and build up these systems.
I have a high level of inflammation and swelling in my joints, lymph glands and fascia. Dr H suspects that some of my joint and muscle pain, fatigue and brain fog can be attributed to a build up of toxins and dead Lyme bugs in my system. So he's prescribed several meds as well as some alternative therapies to help my body detox. He had started me on a fairly aggressive detoxing regime back in July however my body couldn't handle it so we had to stop. I will start on a gentler detox protocol and work towards getting back on the more aggressive meds down the road.
In about a month, we'll start specifically targeting my Bartonella co-infection by adding a 3rd abx to my ever increasing cocktail of meds.
So that is the game plan for the time being. I am to expect things to get really rough again as we slowly incorporate it. No pain, no gain. But obviously, the gain will be worth the pain. We talked quite a bit today about how scary it can be to start new meds knowing that they are going to initially make you sicker. In the last couple of weeks, I've been a whole lot more functional and so I am loathe to rock the boat. However, being 'functional' is still a far cry from being healthy and well.
My definition of what feeling 'good' means would make most folks skin crawl but when you have felt so very bad for so very long, you forget what 'good' is supposed to really feel like. Dr H encouraged me to add in the latest treatment protocols in slowly and keep pushing through. And eventually, I'll be working my treatment around my life as opposed to it being my life.
Both Graham and I were really encouraged by today's appointment. We fully understand that the treatment process is a long haul but we are confident that under Dr H's care I will eventually beat this insidious disease.
This evening I had another one of my gall bladder attacks. They are pretty painful to endure. It seems to have settled down now. However, I have Dr H's cell phone number and know that I would be in good hands should something happen down here. Of course, we'd rather not have a tour of the ER in an American hospital so we'd appreciate your prayers.
We are grateful that God led us to Dr H.
He's a super wise doctor with a super cool chair.
I was in bed until noon resting and trying to reserve my energy and brain power for my appointment.
The appointment went well. I faded about half way through it but we were able to cover a lot of ground during it. Both Graham and I really like Dr H and even have some fun with him.
He's a great guy and a super smart doctor even though he slouches like a teenager when sitting in his chair.
Graham took some pics of me and Dr H today - however Dr H asked that we not publicly show his picture as he was having a bad hair day.
His chair wasn't nearly as self conscious though. It happily posed for a public photo op.
And of course, I can't forget Anthony. Even though he didn't venture out from behind his little window today, it was still great to see him.
And make him giggle. And pay him a lot of money. He laughs. We cry!
It will take about a week to get Dr H's full medical assessment.
But here is the low down on what we discussed today and our game plan for the next phase of treatment.I am making progress. Yes, it's slow but that is to be expected - fighting Lyme is a marathon not a sprint. Dr H believes that it will take about another 9-12 months just to get me functioning at about half my normal pre-Lyme capacity.
I will continue on the same IV meds and can expect to be on them for at least another 6 months.
We will also be moving forward with other aspects of treatment -
My endocrine system and adrenal glands have taken a pretty big hit. I need to have some testing done on these systems. As well, he has prescribed some meds to support and build up these systems.
I have a high level of inflammation and swelling in my joints, lymph glands and fascia. Dr H suspects that some of my joint and muscle pain, fatigue and brain fog can be attributed to a build up of toxins and dead Lyme bugs in my system. So he's prescribed several meds as well as some alternative therapies to help my body detox. He had started me on a fairly aggressive detoxing regime back in July however my body couldn't handle it so we had to stop. I will start on a gentler detox protocol and work towards getting back on the more aggressive meds down the road.
In about a month, we'll start specifically targeting my Bartonella co-infection by adding a 3rd abx to my ever increasing cocktail of meds.
So that is the game plan for the time being. I am to expect things to get really rough again as we slowly incorporate it. No pain, no gain. But obviously, the gain will be worth the pain. We talked quite a bit today about how scary it can be to start new meds knowing that they are going to initially make you sicker. In the last couple of weeks, I've been a whole lot more functional and so I am loathe to rock the boat. However, being 'functional' is still a far cry from being healthy and well.
My definition of what feeling 'good' means would make most folks skin crawl but when you have felt so very bad for so very long, you forget what 'good' is supposed to really feel like. Dr H encouraged me to add in the latest treatment protocols in slowly and keep pushing through. And eventually, I'll be working my treatment around my life as opposed to it being my life.
Both Graham and I were really encouraged by today's appointment. We fully understand that the treatment process is a long haul but we are confident that under Dr H's care I will eventually beat this insidious disease.
This evening I had another one of my gall bladder attacks. They are pretty painful to endure. It seems to have settled down now. However, I have Dr H's cell phone number and know that I would be in good hands should something happen down here. Of course, we'd rather not have a tour of the ER in an American hospital so we'd appreciate your prayers.
We are grateful that God led us to Dr H.
He's a super wise doctor with a super cool chair.
September 15, 2008
REDWOOD CITY - OUR HOME AWAY FROM HOME
We've arrived safe and sound in Redwood City, California.
We're back to see Dr H as I'm due for my next ''in office" visit. Both Graham and I are relieved to be here and excited to see Dr H and his receptionist extraordinaire, Anthony.
Redwood City sort of feels like our home away from home. Which is strange to say, given that this is only our second visit here however it is home to Dr H and his clinic. It is where I could finally be the patient and start my journey to wellness without fear of reprisal or discrimination.
And of course, it is a neat little town that is also home to the infamous Good Nite Inn.
What more could I want?
Well, for starters, Rm 124.
However, when we checked in today, they had messed up our reservation and Rm 124 was not available. I just about passed out cold because based on our last stay, I was quite sure that Rm 124 was the ONLY inhabitable room at the Good Nite Inn.
However, I stand corrected.
I can now happily confirm that there are 2 inhabitable rooms at the Good Nite Inn.
Rm 124 and Rm 242.
And wonder of wonders, Rm 242 is even a step up from Rm 124.
Complete with King size bed, a couch, a fridge and a vaulted ceiling.
We're living the good life for 50 bucks a nite.
Not bad, not bad at all.
Tomorrow I have my appointment with Dr H. Not sure what the rest of the week will hold but we're hoping we'll be able to get in a little visit with Marie and her dad, Jay.
But for the time being, I must rest. The trip took a lot out of me. The flight was hard on my old bod and I had a lot of trouble with my breathing during it. But I am happy and relieved to be here. We're missing the kids but we know that they are in good hands - my folks are 'grandparenting' for the first half of the week and then they will trade off their watch to Graham's mom.
P.S.
Peter - We are missing having you here with us - Mortimer is misbehaving and Lupe is nowhere to be found!
We're back to see Dr H as I'm due for my next ''in office" visit. Both Graham and I are relieved to be here and excited to see Dr H and his receptionist extraordinaire, Anthony.
Redwood City sort of feels like our home away from home. Which is strange to say, given that this is only our second visit here however it is home to Dr H and his clinic. It is where I could finally be the patient and start my journey to wellness without fear of reprisal or discrimination.
And of course, it is a neat little town that is also home to the infamous Good Nite Inn.
What more could I want?
Well, for starters, Rm 124.
However, when we checked in today, they had messed up our reservation and Rm 124 was not available. I just about passed out cold because based on our last stay, I was quite sure that Rm 124 was the ONLY inhabitable room at the Good Nite Inn.
However, I stand corrected.
I can now happily confirm that there are 2 inhabitable rooms at the Good Nite Inn.
Rm 124 and Rm 242.
And wonder of wonders, Rm 242 is even a step up from Rm 124.
Complete with King size bed, a couch, a fridge and a vaulted ceiling.
We're living the good life for 50 bucks a nite.
Not bad, not bad at all.
Tomorrow I have my appointment with Dr H. Not sure what the rest of the week will hold but we're hoping we'll be able to get in a little visit with Marie and her dad, Jay.
But for the time being, I must rest. The trip took a lot out of me. The flight was hard on my old bod and I had a lot of trouble with my breathing during it. But I am happy and relieved to be here. We're missing the kids but we know that they are in good hands - my folks are 'grandparenting' for the first half of the week and then they will trade off their watch to Graham's mom.
P.S.
Peter - We are missing having you here with us - Mortimer is misbehaving and Lupe is nowhere to be found!
September 14, 2008
THIS WEEK ON THE FEARLESS FRONT
Plans change and fears must be faced.
We've spent the weekend on the Sunshine Coast in a little town called Roberts Creek. Friends of ours have a 'holiday home' there that they generously made available to us. Initially, the plan was for just Graham, Parker and Avery to go this weekend for a fun little get away. (Taylor was going to be away at a youth retreat.)
I was not planning to go for several reasons. For starters, I'm exhausted from my 'solo' week. Also, Graham and I are leaving on Monday for California to see Dr H. So the plan was for me to stay home alone this weekend in order to rest up from the week and build up some strength for our impending week away.
And quite honestly, I did not want to go to Roberts Creek as I have painful memories associated with it.
The last time we were in Roberts Creek was 2 summers ago. It was during that time that I became very sick and extremely symptomatic. I had excruciating bone pain, mind blowing headaches and incredible fatigue. I felt toxic. I felt as if I had poison coursing through my veins. My mind and body were doing strange and bizarre things and were becoming unfamiliar to me. It is also the last time that I was able to go for a run.
We now know that the bacteria that causes LD was already attacking my brain and central nervous system. But at the time all I knew was that I had a distinct sense of foreboding that something bad was happening with me. It was during that week that I looked at Graham and said something is very wrong with me. I have a feeling that we are about to enter into a very dark time in our lives. Even as I write about it now, the memory of all the pain and confusion wells up from deep within and the grief spills down my cheeks.
And so my feelings associated with this little holiday home are not happy. They are painful. Very painful. It is the week that everything in my life and my family's life changed. It is the week that the me I knew ceased to exist.
As such, I have had no desire to return to Roberts Creek. Ever. And especially when I am still sick. I have been fearful of re-living the same experience over. I have been fearful of facing the memories. And have I mentioned yet that the Sunshine Coast is an endemic area for Lyme infected ticks? Ah, yes, I am not that thrilled with the plan for anyone in my family to go back to all that.
but plans change
and fears must be faced.
I went to Roberts Creek this weekend because Parker needed me.
And his needs supersede my fears.
Parker has had a rough transition back to school. He is having to face some fears too. We understand his fears because we have some trepidations about this year for him too. This past week has been hard on him and so I just couldn't see not being with him this weekend... especially given that we will be away all this week in California.
So, I went to Roberts Creek for Parker.
And I was forced to face my fears
and in doing so I reclaimed a piece of me.
And I pray that this weekend, Parker will have found the courage to face his fears too.
"For God has not given us the spirit of fear but of power and of love and of a sound mind."
- 2 Timothy 1:7
- 2 Timothy 1:7
We've spent the weekend on the Sunshine Coast in a little town called Roberts Creek. Friends of ours have a 'holiday home' there that they generously made available to us. Initially, the plan was for just Graham, Parker and Avery to go this weekend for a fun little get away. (Taylor was going to be away at a youth retreat.)
I was not planning to go for several reasons. For starters, I'm exhausted from my 'solo' week. Also, Graham and I are leaving on Monday for California to see Dr H. So the plan was for me to stay home alone this weekend in order to rest up from the week and build up some strength for our impending week away.
And quite honestly, I did not want to go to Roberts Creek as I have painful memories associated with it.
The last time we were in Roberts Creek was 2 summers ago. It was during that time that I became very sick and extremely symptomatic. I had excruciating bone pain, mind blowing headaches and incredible fatigue. I felt toxic. I felt as if I had poison coursing through my veins. My mind and body were doing strange and bizarre things and were becoming unfamiliar to me. It is also the last time that I was able to go for a run.
We now know that the bacteria that causes LD was already attacking my brain and central nervous system. But at the time all I knew was that I had a distinct sense of foreboding that something bad was happening with me. It was during that week that I looked at Graham and said something is very wrong with me. I have a feeling that we are about to enter into a very dark time in our lives. Even as I write about it now, the memory of all the pain and confusion wells up from deep within and the grief spills down my cheeks.
And so my feelings associated with this little holiday home are not happy. They are painful. Very painful. It is the week that everything in my life and my family's life changed. It is the week that the me I knew ceased to exist.
As such, I have had no desire to return to Roberts Creek. Ever. And especially when I am still sick. I have been fearful of re-living the same experience over. I have been fearful of facing the memories. And have I mentioned yet that the Sunshine Coast is an endemic area for Lyme infected ticks? Ah, yes, I am not that thrilled with the plan for anyone in my family to go back to all that.
but plans change
and fears must be faced.
I went to Roberts Creek this weekend because Parker needed me.
And his needs supersede my fears.
Parker has had a rough transition back to school. He is having to face some fears too. We understand his fears because we have some trepidations about this year for him too. This past week has been hard on him and so I just couldn't see not being with him this weekend... especially given that we will be away all this week in California.
So, I went to Roberts Creek for Parker.
And I was forced to face my fears
and in doing so I reclaimed a piece of me.
And I pray that this weekend, Parker will have found the courage to face his fears too.
September 13, 2008
THIS WEEK ON THE LYME FRONT
I survived the week with Graham gone.
Really it was only 3 days but I'll take credit for a full week.
3 days of terrible coffee is easily equal to a week of suffering anyway.
All in all, I managed okay. And that is nothing to blink an eye at. Last week I was herxing and could not have managed on my own. The fact that I could get through 3 days on my own without outside support is an encouraging sign that progress is being made. One baby step at a time.
Graham's trip this week coincided with the kids first full week back at school. Which was both good and bad. Bad because it meant doing the early morning off to school routine. I don't do mornings. Admittedly that is not necessarily a 'lyme' thing. I'm just not a morning person. At all. Anytime before 10am is the middle of the night as far as I'm concerned.
Avery is in afternoon kindergarten. And Taylor, who's almost 16, is old enough to get himself off on his own. Taylor actually does mornings about as well as I do - so he appreciates being left to his own devices. So it was only Parker that I needed to get off to school in the morning. And when he woke up Wednesday morning with a tummy ache, I was more than a little relieved to suggest that maybe he should stay home.
So needless to say, I only had to stumble my way through 2 off to school mornings.
My level of fatigue continues to be profound and very limiting. It certainly helped that Avery was in school every afternoon. I dragged myself off the couch long enough to drop her off at school each day and then would make a beeline for home and bed. The lengthy afternoon nap allotted me enough energy to sit at the park and let the kids play afterschool for an hour. Then home for another nap before dinner. And by evening I was semi-comatose and not really coherent.
So I am super thankful the kids didn't have homework.
Grade 4 math and spelling would have been way beyond me.
Really it was only 3 days but I'll take credit for a full week.
3 days of terrible coffee is easily equal to a week of suffering anyway.
All in all, I managed okay. And that is nothing to blink an eye at. Last week I was herxing and could not have managed on my own. The fact that I could get through 3 days on my own without outside support is an encouraging sign that progress is being made. One baby step at a time.
Graham's trip this week coincided with the kids first full week back at school. Which was both good and bad. Bad because it meant doing the early morning off to school routine. I don't do mornings. Admittedly that is not necessarily a 'lyme' thing. I'm just not a morning person. At all. Anytime before 10am is the middle of the night as far as I'm concerned.
Avery is in afternoon kindergarten. And Taylor, who's almost 16, is old enough to get himself off on his own. Taylor actually does mornings about as well as I do - so he appreciates being left to his own devices. So it was only Parker that I needed to get off to school in the morning. And when he woke up Wednesday morning with a tummy ache, I was more than a little relieved to suggest that maybe he should stay home.
So needless to say, I only had to stumble my way through 2 off to school mornings.
My level of fatigue continues to be profound and very limiting. It certainly helped that Avery was in school every afternoon. I dragged myself off the couch long enough to drop her off at school each day and then would make a beeline for home and bed. The lengthy afternoon nap allotted me enough energy to sit at the park and let the kids play afterschool for an hour. Then home for another nap before dinner. And by evening I was semi-comatose and not really coherent.
So I am super thankful the kids didn't have homework.
Grade 4 math and spelling would have been way beyond me.
September 12, 2008
BUT YOU LOOK GOOD
"But you look good."However, it doesn't.
I've spent a lot of time struggling to understand why it bugs me. Often the only time folks see me is when I'm functional enough to be out and about. And fair enough, on those occasions, I don't fit most folks idea of how a sickly person looks.
But even on one of my 'good' days, I can SEE the toll that it this disease has taken on my body. I wonder why others cannot. And whether they can see it or not, I FEEL the effects of LD all the time.
When folks ask how I am and I tell them I feel like "I was just run over by a Mack truck," and their response is:
"Really?...But you look good!"
I hear, "If you look good, than you can’t possibly be as sick as you say you are." And I am left wondering whether or not they recognize my pain or are they just not willing to acknowledge it.
Awhile back I was venting to Graham about my irritation over this and my subsequent guilt over the fact that it bugs me. While it felt good to vent about it to him, it did little to alleviate my confusion over the issue. Of course, true to form, my husband who is gifted in finding humor in every situation said, "I’m going to Google it."
"Google what?" I said.
"Google, ‘but you look good.’" He said.
I guffawed and rolled my eyes as he plucked away at the keyboard.
Imagine my surprise when a whole website and organization dedicated to this very topic popped up.
Here's what we read...
Excerpt from the book,"But you LOOK good!" Written by Wayne and Sherri Connell:
"Just about every one of us has experienced being so sick we had to stay home from work or school, because we were too sick to go. We hate being sick, because the time ticks by, the work piles up and we cannot do anything about it. We gripe and moan that we “don’t have time to be sick!” even for just a day. It is just plain miserable to be sick, in pain and debilitated - nobody enjoys it. Often when we come across someone who says they have been sick and in pain for a long time, we might think they are either exaggerating or they are not doing something about it. After all, when we got sick, we got some rest, took some medication and were soon back on our feet. Moreover, when we were sick, we were pale and droopy, but they often look “perfectly normal.”
The truth is, most chronic conditions cannot be seen with the naked eye, but nevertheless are persistently keeping the person from enjoying life the way they once knew. For instance, a person can battle extreme fatigue and or cognitive impairments on the inside, even though they may appear healthy and well on the outside. Just the same, a person can have horrible pain and or dizziness, despite the fact that to the onlooker they may look strong and able.
The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp. This can cause great strains on relationships between friends, family members and spouses. Ironically, those with chronic conditions would like nothing more than to gain complete control of their lives and not have to adjust to any limitations at all! Nonetheless, their bodies do not always cooperate with their desires, no matter how much they want it to. Regrettably, a travesty occurs when the person not only has to contend with no longer being able to do what they love to do, but also has to battle for their loved one's belief, respect and understanding.
While the person with the illness/pain is mourning their loss of ability and freedom, others often accuse them of just being lazy or malingering. We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing their situation or trying to pull the wool over our eyes, because to us they “look fine.” After all, when we rebut what they are telling us with, "But you LOOK good," our friend really hears, "But, I don’t believe you, because I can’t see it."
Frankly, it is impossible for us to be compassionate, until we have acknowledged there is a situation for which to be compassionate! In other words, how can we say, “I am sorry you are sick,” when we are always saying, “I do not believe you are sick, because you don’t look sick?”
People living with chronic conditions do not want to give up! They make efforts to laugh, smile, look their best and enjoy life, even though they know they will pay dearly for it. Because of this, we should not confuse their endeavors to live life and be positive, with assuming they are feeling well or doing better. Instead, let us commend them for their incredible courage, perseverance and persistence that make their illnesses and injuries seem invisible to us."
For more information:
www.MyIDA.org
www.InvisibleDisabilities.org
September 10, 2008
MY COFFEE BARISTA RAN OFF WITH MY LAPTOP
Graham is out of town this week.
And he hijacked the laptop. Which throws a wrench in my ability to endlessly blubber away in cyber space as I usually post with the laptop from my bed or the couch. Our home office computer is rather large and stationary. And not easily brought to bed.
He left Tuesday morning and will be back by Thursday eve. It's really not that long but it feels like forever.
When Graham is gone we all suffer - I have to make my own bad coffee and the kids end up eating a whole lotta Mac and Cheese.
I am exhausted and brain dead but other than that I'm holding my own.
And he hijacked the laptop. Which throws a wrench in my ability to endlessly blubber away in cyber space as I usually post with the laptop from my bed or the couch. Our home office computer is rather large and stationary. And not easily brought to bed.
He left Tuesday morning and will be back by Thursday eve. It's really not that long but it feels like forever.
When Graham is gone we all suffer - I have to make my own bad coffee and the kids end up eating a whole lotta Mac and Cheese.
I am exhausted and brain dead but other than that I'm holding my own.
September 8, 2008
CELEBRATING THE UNIQUENESS OF OUR FAMILY
Today was Family Day in the Goertzen household.
Family Day is a celebration of the unique way our family came to be.
Today is our 9th Family Day.
The story of the way our family came to be starts16 years ago.
I was 18 when I found out I was pregnant.
I chose to parent. My boyfriend chose not to.
9 months later, I became the proud mom of a 9lb 1oz gift from God.
A precious baby boy I named Taylor.
And so began our journey. Just me and my boy.
Being a single parent was not ideal. But it was my reality.
It was challenging but I was blessed with amazing love and support.
My folks loved Taylor unreservedly. And they put that love into action by enthusiastically embracing their role as grand parents.
And God brought two special people into mine and Taylor's life. A couple who felt God's calling to become family to him and to I. And they did. Uncle Shelby and Auntie Jennifer played an integral role in the early years of Taylor's life. They loved and supported me through some tough, lonely years. And they loved Taylor with all of their hearts and gave him much of their time. I am so grateful that they chose to make us family.
I was blessed and am grateful that both my dad and Shelby recognized Taylor's need for 'male bonding'. As such, they were both wholeheartedly committed to filling that role for Taylor.
But a boy still needs a dad.
And so Taylor prayed for a dad.
A dad that could cook.
I prayed for a husband.
One that could cook.
We prayed and we waited.
And waited
And waited
6 years later, God answered our prayers when he brought Graham into our lives.
And he could cook. Hallelujah.
Our wedding was a celebration of the much answered prayers of many. And it united the three of us forever.
Graham's adoption of Taylor was finalized 11 months later. A week shy of his 7th birthday.
A year later Parker arrived in his own splendid uniqueness.
3 years after that, royalty took up residence in our home with the arrival of our princess, Avery.
And that is the miracle of how our family came to be.
Family day is a tradition in our home and as such we have rituals.
We have always celebrated Family Day with Uncle Shelby and Auntie Jennifer. We are so grateful that God brought our families together. He knew long before we all did just what his purpose was in bringing us together. Their involvement in Taylor's life solidified their desire to adopt. Eventually, part of their family was expanded through adoption.
We are amazed at God's unique timing in building each our families. The adoption of two of their four sons was finalized the same year and the same month as Graham's adoption of Taylor.
And we revel at his sense of humor too. While there is no biological connection between our 2 families, we are family nonetheless. We find it pretty cool, kind of funny and slightly ironic that the 'cousins' have an uncanny resemblance to each other.
This year will be the first time we have not been able to celebrate Family Day together. Life, health and a 6 hour drive have gotten in the way. I will miss being with my nephews but I won't miss Annie, their dog!
Every year we have a DQ cake made just for us. Over the years, the cakes themselves have taken on a life of their own. We have endeavored to make sure they are representative of the diversity of our families. Most of the time they don't quite get it right...but that is what has made them legendary.
This year we made sure the cake included the newest member of our family... Walter.
Each year, on Family Day we light 3 candles.
The first is to honor where we came from. And so we honor the role Taylor's birth dad had in creating Taylor. He is part of Taylor. However his choice to leave before Taylor was born has left Taylor with an unwritten chapter in his life. But God has a purpose and a plan and we trust his perfect timing in writing that chapter. While the act of adoption is a one time occurrence, the process of adoption is a life long journey. We are committed to helping and supporting Taylor on his adoption journey. But that is Taylor's story to tell. Not ours.
The second candle we light in honor of those who helped to prepare us for our forever family. We honor my parents who went above and beyond the call of a grandparent. Their love and support helped to make Taylor who he is today. We honor the commitment that Uncle Shelby and Auntie Jennifer made to involve themselves in the life of a little boy whom God knew needed them. And we honor and are thankful for the many, many others who loved us and prayed for us as we waited for our forever family.
The third candle we light in honor of our forever family. Our family. The family we are now. The family that we were created to be a part of. The family that God chose for us.
Each of our children is a gift from God and they were hand picked by God to complete us as a family.
Our last traditional family day ritual is for me to read the kids the following excerpt from the book by Rick Warren called "The Purpose Driven Life."
"You are not an accident! Your birth was no mistake or mishap and your life is no fluke of nature. Your parents may not have planned you, but God did. He was not at all surprised by your birth. In fact, he expected it.
Long before you were conceived by your parents you were conceived in the mind of God. He thought of you first. It is not fate, nor chance, nor luck nor coincidence that you are breathing at this very moment. You are alive because God wanted to create you. The Bible says, "The Lord will fulfill his purpose for me."
God prescribed every single detail of your body. He deliberately chose your race, the color of your skin, your hair and every other feature. He custom made your body just the way he wanted it. He also determined the natural talents you would possess and the uniqueness of your personality. The Bible says, "You know me inside and out, you know every bone in my body; you know exactly how I was made, bit by bit, how I was sculpted from nothing into something."
Because God made you for a reason, he also decided when you would be born and how long you would live. He planned the days of your birth and death. The Bible says, "You saw me before I was born and scheduled each day of my life before I began to breathe. Everyday was recorded in your Book."
God also planned where you'd be born and where you'd live for his purposes. Your race and nationality are no accident. God left no detail to chance. He planned it all for his purpose. Nothing in your life is arbitrary.
Most amazing, God decided how you would be born. Regardless of the circumstances of your birth or who your birth parents are, God had a plan in creating you. It doesn't matter whether your parents were good, bad or indifferent. God knew that those 2 individuals possessed exactly the right genetic make up to create the custom "you" he had in mind. They had the DNA God wanted to make you.
While there are illegitimate parents, there are no illegitimate children. Many children are unplanned by their parents, but they are not unplanned by God. God's purpose takes into account human error and even sin.
God never does anything accidentally and he never makes mistakes. He has a reason for everything he creates. Every plant and every animal (even ticks?!) was planned by God and every person was designed with a purpose in mind.
If there was no God, then we'd all be "accidents," the result of astronomical random chance in the universe. But there is a God, he made you for a reason, and your life has profound meaning!"
Family Day is a celebration of the unique way our family came to be.
Today is our 9th Family Day.
The story of the way our family came to be starts16 years ago.
I was 18 when I found out I was pregnant.
I chose to parent. My boyfriend chose not to.
9 months later, I became the proud mom of a 9lb 1oz gift from God.
A precious baby boy I named Taylor.
And so began our journey. Just me and my boy.
Being a single parent was not ideal. But it was my reality.
It was challenging but I was blessed with amazing love and support.
My folks loved Taylor unreservedly. And they put that love into action by enthusiastically embracing their role as grand parents.
And God brought two special people into mine and Taylor's life. A couple who felt God's calling to become family to him and to I. And they did. Uncle Shelby and Auntie Jennifer played an integral role in the early years of Taylor's life. They loved and supported me through some tough, lonely years. And they loved Taylor with all of their hearts and gave him much of their time. I am so grateful that they chose to make us family.
I was blessed and am grateful that both my dad and Shelby recognized Taylor's need for 'male bonding'. As such, they were both wholeheartedly committed to filling that role for Taylor.
But a boy still needs a dad.
And so Taylor prayed for a dad.
A dad that could cook.
I prayed for a husband.
One that could cook.
We prayed and we waited.
And waited
And waited
6 years later, God answered our prayers when he brought Graham into our lives.
And he could cook. Hallelujah.
Our wedding was a celebration of the much answered prayers of many. And it united the three of us forever.
Graham's adoption of Taylor was finalized 11 months later. A week shy of his 7th birthday.
A year later Parker arrived in his own splendid uniqueness.
3 years after that, royalty took up residence in our home with the arrival of our princess, Avery.
And that is the miracle of how our family came to be.
Family day is a tradition in our home and as such we have rituals.
We have always celebrated Family Day with Uncle Shelby and Auntie Jennifer. We are so grateful that God brought our families together. He knew long before we all did just what his purpose was in bringing us together. Their involvement in Taylor's life solidified their desire to adopt. Eventually, part of their family was expanded through adoption.
We are amazed at God's unique timing in building each our families. The adoption of two of their four sons was finalized the same year and the same month as Graham's adoption of Taylor.
And we revel at his sense of humor too. While there is no biological connection between our 2 families, we are family nonetheless. We find it pretty cool, kind of funny and slightly ironic that the 'cousins' have an uncanny resemblance to each other.
This year will be the first time we have not been able to celebrate Family Day together. Life, health and a 6 hour drive have gotten in the way. I will miss being with my nephews but I won't miss Annie, their dog!
Every year we have a DQ cake made just for us. Over the years, the cakes themselves have taken on a life of their own. We have endeavored to make sure they are representative of the diversity of our families. Most of the time they don't quite get it right...but that is what has made them legendary.
This year we made sure the cake included the newest member of our family... Walter.
Each year, on Family Day we light 3 candles.
The first is to honor where we came from. And so we honor the role Taylor's birth dad had in creating Taylor. He is part of Taylor. However his choice to leave before Taylor was born has left Taylor with an unwritten chapter in his life. But God has a purpose and a plan and we trust his perfect timing in writing that chapter. While the act of adoption is a one time occurrence, the process of adoption is a life long journey. We are committed to helping and supporting Taylor on his adoption journey. But that is Taylor's story to tell. Not ours.
The second candle we light in honor of those who helped to prepare us for our forever family. We honor my parents who went above and beyond the call of a grandparent. Their love and support helped to make Taylor who he is today. We honor the commitment that Uncle Shelby and Auntie Jennifer made to involve themselves in the life of a little boy whom God knew needed them. And we honor and are thankful for the many, many others who loved us and prayed for us as we waited for our forever family.
The third candle we light in honor of our forever family. Our family. The family we are now. The family that we were created to be a part of. The family that God chose for us.
Each of our children is a gift from God and they were hand picked by God to complete us as a family.
Our last traditional family day ritual is for me to read the kids the following excerpt from the book by Rick Warren called "The Purpose Driven Life."
You are not an accident!
"You are not an accident! Your birth was no mistake or mishap and your life is no fluke of nature. Your parents may not have planned you, but God did. He was not at all surprised by your birth. In fact, he expected it.
Long before you were conceived by your parents you were conceived in the mind of God. He thought of you first. It is not fate, nor chance, nor luck nor coincidence that you are breathing at this very moment. You are alive because God wanted to create you. The Bible says, "The Lord will fulfill his purpose for me."
God prescribed every single detail of your body. He deliberately chose your race, the color of your skin, your hair and every other feature. He custom made your body just the way he wanted it. He also determined the natural talents you would possess and the uniqueness of your personality. The Bible says, "You know me inside and out, you know every bone in my body; you know exactly how I was made, bit by bit, how I was sculpted from nothing into something."
Because God made you for a reason, he also decided when you would be born and how long you would live. He planned the days of your birth and death. The Bible says, "You saw me before I was born and scheduled each day of my life before I began to breathe. Everyday was recorded in your Book."
God also planned where you'd be born and where you'd live for his purposes. Your race and nationality are no accident. God left no detail to chance. He planned it all for his purpose. Nothing in your life is arbitrary.
Most amazing, God decided how you would be born. Regardless of the circumstances of your birth or who your birth parents are, God had a plan in creating you. It doesn't matter whether your parents were good, bad or indifferent. God knew that those 2 individuals possessed exactly the right genetic make up to create the custom "you" he had in mind. They had the DNA God wanted to make you.
While there are illegitimate parents, there are no illegitimate children. Many children are unplanned by their parents, but they are not unplanned by God. God's purpose takes into account human error and even sin.
God never does anything accidentally and he never makes mistakes. He has a reason for everything he creates. Every plant and every animal (even ticks?!) was planned by God and every person was designed with a purpose in mind.
If there was no God, then we'd all be "accidents," the result of astronomical random chance in the universe. But there is a God, he made you for a reason, and your life has profound meaning!"
September 7, 2008
THIS WEEK ON THE FEARLESS FRONT
Taylor has started grade 11.
Parker has started grade 4
And Avery starts her first official day of kindergarten tomorrow.
All my babies are now in school.
I became a mom young. As in just graduated high school young. As a result, I never went to college or university. Not because I couldn't have. I just felt I had to make a choice. For me, choosing to parent meant making motherhood my full time career. And I have never, not for one single moment ever regretted that choice.
Fast forward 11 years. Taylor was in school full time. Parker was in Preschool. And I was getting a small taste of child free time which gave me some freedom to explore some other career paths - apart from being a mom. But I also felt like our family was not complete. Once again, I felt I had a choice to make. For me, dividing my time and energies between home and career meant one or the other would suffer. I did not feel I could wholeheartedly give myself to both. And so I chose to make motherhood my full time career a little longer. And I'm so glad I did. God gave us Avery. Our family would not be complete without her.
I have been incredibly fortunate to have had the privilege of more or less being able to be home full time with my kids. Being a stay at home mom is more than just my chosen profession. It is my calling, my passion, my purpose. However, this year marks the end of an era. My kids are no longer home full time. And so my job description has shifted. My kids still need a full time mom but I just happen to have a lot more kid free time.
So, this was supposed to be "The Year".
The year I could pursue my passion for all things creative.
The year I would have the freedom to expand my horizons.
The year I could expand my sense of purpose.
The year I could earn a full time pay cheque.
And this was the year we thought we'd finally financially get 'ahead'.
Okay, that's probably a bit of a stretch...
This was the year we hoped to start making a dent in our debt.
I've spent some time this week thinking about "The Year". At first glance, it didn't appear to be shaping up to be what I planned for it to be...
Obviously, I won't be pursuing a new career. My new full time job is fighting Lyme. And it doesn't pay very well..in fact, it costs me a lot of money to do it. We're incurring debt rather than paying it down but God is still taking care of us. Our needs are being met. We have been humbled by the ways in which God provides. An anonymous gift last Sunday and a cheque we received in the mail this week reminded me of how truly blessed we are in spite of it all.
And obviously, expanding my horizons and pursuing some of my creative aspirations haven't appeared to be compatible with new full time Lyme career. And then I received an email this week. And it radically changed my perspective. It came all the way from the other side of Canada. From a woman I do not know. But she is a fellow 'lymie' who was forwarded my little blog. She thanked me for sharing my story. She told me it inspired her and reminded her that she is not alone.
That email made my day and helped me to realize something. My little blog has become my creative outlet. And through it, God is expanding my horizons. And if sharing my story can help someone to find hope and encouragement than that brings a new sense of purpose to my life.
The Year has barely started and God has already seen fit to fulfill the desires I had for it.
Parker has started grade 4
And Avery starts her first official day of kindergarten tomorrow.
All my babies are now in school.
I became a mom young. As in just graduated high school young. As a result, I never went to college or university. Not because I couldn't have. I just felt I had to make a choice. For me, choosing to parent meant making motherhood my full time career. And I have never, not for one single moment ever regretted that choice.
Fast forward 11 years. Taylor was in school full time. Parker was in Preschool. And I was getting a small taste of child free time which gave me some freedom to explore some other career paths - apart from being a mom. But I also felt like our family was not complete. Once again, I felt I had a choice to make. For me, dividing my time and energies between home and career meant one or the other would suffer. I did not feel I could wholeheartedly give myself to both. And so I chose to make motherhood my full time career a little longer. And I'm so glad I did. God gave us Avery. Our family would not be complete without her.
I have been incredibly fortunate to have had the privilege of more or less being able to be home full time with my kids. Being a stay at home mom is more than just my chosen profession. It is my calling, my passion, my purpose. However, this year marks the end of an era. My kids are no longer home full time. And so my job description has shifted. My kids still need a full time mom but I just happen to have a lot more kid free time.
So, this was supposed to be "The Year".
The year I could pursue my passion for all things creative.
The year I would have the freedom to expand my horizons.
The year I could expand my sense of purpose.
The year I could earn a full time pay cheque.
And this was the year we thought we'd finally financially get 'ahead'.
Okay, that's probably a bit of a stretch...
This was the year we hoped to start making a dent in our debt.
I've spent some time this week thinking about "The Year". At first glance, it didn't appear to be shaping up to be what I planned for it to be...
Obviously, I won't be pursuing a new career. My new full time job is fighting Lyme. And it doesn't pay very well..in fact, it costs me a lot of money to do it. We're incurring debt rather than paying it down but God is still taking care of us. Our needs are being met. We have been humbled by the ways in which God provides. An anonymous gift last Sunday and a cheque we received in the mail this week reminded me of how truly blessed we are in spite of it all.
And obviously, expanding my horizons and pursuing some of my creative aspirations haven't appeared to be compatible with new full time Lyme career. And then I received an email this week. And it radically changed my perspective. It came all the way from the other side of Canada. From a woman I do not know. But she is a fellow 'lymie' who was forwarded my little blog. She thanked me for sharing my story. She told me it inspired her and reminded her that she is not alone.
That email made my day and helped me to realize something. My little blog has become my creative outlet. And through it, God is expanding my horizons. And if sharing my story can help someone to find hope and encouragement than that brings a new sense of purpose to my life.
The Year has barely started and God has already seen fit to fulfill the desires I had for it.
September 6, 2008
THIS WEEK ON THE LYME FRONT
The Gravity Defying Week.
Overall, this week has been rough. Out of this world rough. I have been herxing. I have had a whole meteor shower of ugly symptoms rain down on me.
I have been surrounded by a gravitational force field so strong that it left me encapsulated on my couch. This force field hijacked my energy and my mind. My fatigue has been so profound that I could have stepped foot on the moon without a space suit and they still would have had to scrape me off the surface.
I even broke the cardinal rule - I missed a dose of abx. In 16 months of treatment, no matter how sick or miserable I was, I have NEVER missed a dose. Never. This week I did.
While my body has been tied to my couch by this freakishly unearthly gravitational pull, my mind has been free floating through space. I have had a million thoughts swirling through my head but my ability to reign them in long enough to cohesively form a sentence has eluded me. I've tried to write but I have just laid here, blankly staring at my screen.
My neuropathies have been out of this world on the richter scale of pain. Ever tightly squeezed an ice cube in your hand? The icy cold painful burning sensation that that produces is what my nerve pain feels like to me. Full body. No relief. No release. An incessant barrage of icy burning, tingling pain.
And then there were the drenching night sweats. Internal head pressure. Ringing ears. Swelling joints. Shortness of breath. Criss crossing eyes. Quivering kidneys, liver and collicky gallbladder. Twitching, twittering muscles and limbs. Come to think of it, I suspect these crazy body hijinx are similar to the sensations that astronauts experience upon re-enty into earth. (minus the profuse sweating - they'd drown in their space suit).
I suppose each day of treatment brings me one step closer on my journey to re-entry too.
September 5, 2008
MY NURSE'S CHEST
One of my home care nurses came by yesterday to show me her chest.
Her name is Jill.
Her chest's name is Chester.
Chester the Chest. Truly corny.
Maybe Mr Dressup and his tickle trunk can pay me a visit next week.
Chester the Chest is a model.
Too bad he's the rubber kind that comes in a trunk.Jill brought Chester by to help educate me about Central Lines.
Currently I have a PICC Line - Peripherially Inserted Central Catheter. A PICC Line is inserted into one of the large veins in the arm. The line is then threaded through the vein, up the length of your arm and into your superior vena cava, where the tip of it sits just above your heart. At the point of insertion, a portion of the line exits the body. At the end of it is a special cap. This is where my IV tubing is attached when I need to administer my IV meds. I am currently on IV 4 hours a day.
A Central Line serves the same purpose as a PICC Line. The biggest difference is that a central line is implanted in the chest. It is a better choice when long term IV treatment is needed. There is less risk of infection and it is designed to be in the body long term. When DR H first prescribed me IV treatment back in June, he recommended that I have a Central Line put in. It is highly likely that I will need to be on IV treatment for 9 to 15 months. However, at that time getting a Central Line was not immediately possible which is why we opted to have a PICC line put in.
There are two different types of Central Lines to choose from. And Chester very graciously modeled both types for me.
The external catheter (on left) is very similar to the PICC line. Similar, in that the line exits through an opening in the skin and hangs several inches outside of the body. Different because part of it is implanted inside the body BEFORE an entry point is made into a large vein. This makes it more sustainable long term.
Subcutaneous catheters (on right) are called medi ports. In this type of catheter, the line does not exit the body. Instead of coming outside the skin, the tube ends in a chamber or port that is implanted under the skin. The port is accessed by sticking a needle through the skin in to it. The IV tubing is attached to the needle, which needs to be changed every seven days. Which means a weekly poke in the chest.
Obviously, the needle less line is more appealing. The needle is not the issue, it's just that I'm a little tired of being poked and prodded, thank you very much! However, I need to carefully consider both options as there are pros and cons to each of them.
I'm super appreciative that Jill brought Chester by for a visit. He's pretty cool, for a plastic chest. And I'm grateful for Jill's guidance and input. It will help me make an informed decision should it still be deemed necessary by DR H for me to trade in Mr PICC for a Central Line.
September 1, 2008
AFTERMATH OF A TAIL GATE PARTY
Yesterday we were able to make it to the annual Warkentin family picnic. There are a lot of us. A lot of us dressed in black and white. We are not very subtle. We took over a large portion of the park. We had a motor home there. We had rented the big sheltered picnic area. All of it was in the shade. And it was cold in the shade. But warm in the sun. The only place the sun was shining was in the parking lot. So we moved the party to the middle of the parking lot. We blocked traffic. We raised eyebrows. But at least we were warm. Whatever it takes.
I was super glad I was well enough to make it. I love my extended family and am not able to connect with them nearly enough. And well, if truth be told, aside from loving the rellies, the food at these picnics is motivation enough to come. Especially the pecan squares. Sadly they didn't make it this year. I missed them. I missed the one who creates these delectable treats. However, reliable sources have told me it was not from a lack of effort. So, even though I'm a little bitter, I'm willing to let it go, this one time.
Today, I am suffering the aftermath of yesterday's tailgate party.
I am flat on my back on the couch.
Haven't been able to move from it all day.
Every bone in my body is screaming.
My nervous system is on overdrive.
I am twitching and shaking and burning.
My kidneys are on overload and I'm peeing blood.
My legs are so gimpy, walking is near impossible.
The fatigue is overwhelming.
G had to carry me to bed tonight.
I am sad that sitting in a parking lot can do this to me.
But I am happy that I did, pecan squares or not.