I did not spend yesterday upstairs with the adults for Easter service. I was downstairs in our newly painted and cleaned space (Can I just say THANK YOU again to all the hands that made that happen in time for Easter Services!!!!) with the kiddos.
We had three babies and 4 preschoolers with us yesterday. The babies did a great job being cute. I wish I would have brought my camera with me. Our church is pretty casual and jeans & tees are the normal attire. Easter Sunday seems to compel everyone to dress up though, and the kids were no exception. All of them were too stinkin CUTE! And how do you not just love a baby in a tie and a HAT! (Amos, you and your brothers were to die for!)
The preschoolers were wearing their Easter best as well, but the comments that came out of their mouths yesterday had me rolling on the floor.
For example-
Emily B.: Come'er please!
Me: Okay. What's up, buttercup?
Emily B.: (In all seriousness and hands on hips) Buttercup is not my name. I am Emily. I am 3. You are not 3. You are........ (cocking her head to the side) A LOT more than 3!
(True that, girlfriend!)
Luke E.- (And really, with the tie AND a suit vest!!! Could you be ANY cuter?) who insisted on singing Jingle Bells regardless of what song we were singing. Even when I asked you what song you wanted to sing and you suggested Jesus Loves Me, Jingle Bells was all that would come out of your mouth when we started singing. And it cracked you up! That was the even funnier part. You would launch into Jingle Bells and then double over laughing at the hilarity. Added bonus: You "playing" air guitar using a toy boat while singing Jingle Bells.
Mateo Z. - Your love of Cars the movie and cars in general never ceases to amaze me. I loved your retelling of the the Easter story with cars. And of course, Lightning McQueen played Jesus. "Lightning is Jesus cuz he is the bestest one. Like Jesus!"
Chaim P.- Buddy, your fear of the unknown is so sweet it sometimes breaks my heart a little. I can't wait for you to come down and stay a whole service with us again. I am so glad you came down and tried it out for a few minutes. And you made me laugh when I asked if you were scared because you were crying when mom left for a minute and your response was: "I not scare a you. I scare a duh room." At least you aren't scared of me anymore. That only took about 9 months!
Sweet, sweet kids. You guys made my Easter Sunday so very special.
Monday, 5 April 2010
It's best to only light one end of the candle at a time
It has been a wild couple of weeks around here.
I have been feeling really good lately. About the best I have felt in 2-3 years. Very little neuro pain, no balance issues, no headaches, no fine motor skills issues. I still have the never ending fatigue, but the drugs seem to keep me functioning at a tolerable level.
Apparently when I work like a crazy person and burn the candle at both ends, I can get the symptoms to come back.
I have been working at one of our properties in Woodburn for the past 3 weeks. I have picked up an additional 10 hours a week down there + drive time and am working 6 days a week between my place in Portland and the extra hours in Woodburn.
In addition, this last week our church moved into our 4th (maybe 5th?) location in the last 2 years. This new spot required A LOT of clean up and preparation before the space was usable for Easter Sunday. Mostly clean up in the kids area. Guess who is in charge of the kids program? Yeah. That would be me. During the last week I made 1 trip to IKEA, 3 trips to Ross/Marshalls/HomeGoods & 2 trips to Goodwill to pick up needed supplies. Plus on Saturday I spent 8+ hours painting, cleaning, & prepping the childrens area. (And to all of you who helped with that major project THANK YOU SO VERY MUCH!!!! We couldn't have done it without you!)
Needless to say, I am EXHAUSTED! I really thought I could keep up with all of the running, but I am finding this morning that I am in a sorry state of preparation for the week. I can't find stuff that I need for work (paperwork & my flash drive); my entire body aches and a lot of the old neuro pain is flaring up, and I am SO TIRED I could cry. So far the drugs aren't helping one bit.
I am disappointed that I can't keep up like I used to. In the past I would have been able to knock out a week like that and added one more right behind it. It is frustrating to know that my limitations are, well, limiting! But at the same time, it is good to know that I have (up until now) found a good balance where I was still able to do a lot of things that are important to me, help out at church, hold down a job and still enjoy my life. I just need to be better about setting limits and not trying to do everything.
Hopefully with a few days of "normal" activity, I will be feeling more like I have the past few months and not like I am getting run over by a train!
I have been feeling really good lately. About the best I have felt in 2-3 years. Very little neuro pain, no balance issues, no headaches, no fine motor skills issues. I still have the never ending fatigue, but the drugs seem to keep me functioning at a tolerable level.
Apparently when I work like a crazy person and burn the candle at both ends, I can get the symptoms to come back.
I have been working at one of our properties in Woodburn for the past 3 weeks. I have picked up an additional 10 hours a week down there + drive time and am working 6 days a week between my place in Portland and the extra hours in Woodburn.
In addition, this last week our church moved into our 4th (maybe 5th?) location in the last 2 years. This new spot required A LOT of clean up and preparation before the space was usable for Easter Sunday. Mostly clean up in the kids area. Guess who is in charge of the kids program? Yeah. That would be me. During the last week I made 1 trip to IKEA, 3 trips to Ross/Marshalls/HomeGoods & 2 trips to Goodwill to pick up needed supplies. Plus on Saturday I spent 8+ hours painting, cleaning, & prepping the childrens area. (And to all of you who helped with that major project THANK YOU SO VERY MUCH!!!! We couldn't have done it without you!)
Needless to say, I am EXHAUSTED! I really thought I could keep up with all of the running, but I am finding this morning that I am in a sorry state of preparation for the week. I can't find stuff that I need for work (paperwork & my flash drive); my entire body aches and a lot of the old neuro pain is flaring up, and I am SO TIRED I could cry. So far the drugs aren't helping one bit.
I am disappointed that I can't keep up like I used to. In the past I would have been able to knock out a week like that and added one more right behind it. It is frustrating to know that my limitations are, well, limiting! But at the same time, it is good to know that I have (up until now) found a good balance where I was still able to do a lot of things that are important to me, help out at church, hold down a job and still enjoy my life. I just need to be better about setting limits and not trying to do everything.
Hopefully with a few days of "normal" activity, I will be feeling more like I have the past few months and not like I am getting run over by a train!
Wednesday, 3 March 2010
Photos by Kiddos
On Monday nights I watch two of my favorite kiddos in exchange for laundry. (Their parents think I am getting the short end of the stick, but I beg to differ!) Hanging with Miss B and Mr. S is the highlight of my week and they always keep me entertained. This week I let them play with my camera and these are some of the shots they came up with.
Mom & Dads Closet
Dads shoes
The TV
The Sink
The Shower
Ductwork
The TV (again) with Prince Caspian (again)
Fresh Pedi
Monkey Tattoo
Angel Tattoo
Mr. S in my Glasses
Miss B in my Glasses
Mr. S crawling under the chair
Mr. S & his Belly
"This is my CRAZY face!"
Mr. S goes upsidedown
"Look at my Tounge!"
In short, I always have a wonderful time with them and look forward to it every single week. Two of my favorite little guys in the world!
Monday, 1 March 2010
Sunday, 28 February 2010
Something besides my brain
As proof that my life isn't all doctors appointments, prescriptions, procedures and other general torture; I bring you some pictures I have taken out on walks through the neighborhood. These were from today.
Thursday, 25 February 2010
Normal. Average. Nothing Special.
Those are the best things I could ever hear about my kidneys.
I just got a call from my doctors office. I knew it had to be good news because the nurse called and not the doctor. (Only the doctor delivers really bad news!) My kidneys are normal in every way. Not misshapen. No growths. No abnormalities. Just lovely, normal sized, appropriately located kidneys.
I am going to celebrate now!
I just got a call from my doctors office. I knew it had to be good news because the nurse called and not the doctor. (Only the doctor delivers really bad news!) My kidneys are normal in every way. Not misshapen. No growths. No abnormalities. Just lovely, normal sized, appropriately located kidneys.
I am going to celebrate now!
Wednesday, 24 February 2010
And now we wait. Again.
I had my MRI today. The MRI itself was completely uneventful. I think it was the shortest one I have had to date. Apparently there is less to admire in your abdominal cavity than your cranium!
The best part about the MRI was the fact that I didn't have to to in head first! Sooooo much easier to stay in the tube when your head is sticking out. My feet are not claustrophobic in the least. My head is apparently the problem. (No comments from the peanut gallery, thank you very much!)
The worst part was the RN who put in my IV for the contrast dye. I went through my usual schpeel with the Radiology Tech and showed him the 'sweet spots' on my arms that usually get used for draws and lines up at OHSU. He checked them out and had another tech check them out. They both decided that they wanted a nurse to set my line.
So the nurse comes in, I give him the lousy vein review and let him know that wherever he wants to stick me is fine and that if he has to take two tries I understand. He then proceeds to run the MOST painful IV stick I have had in years!
I used to be a big wienie about needles and IV sticks. I have learned to suck it up. Most of it is mind over matter. For me anyway. Additionally, with all the sticks, pokes, prods, scans and procedures I have endured in the last year; my tolerance for pain has escalated greatly. This one was ridiculous.
As soon as he stuck me I knew he hadn't gotten in and yet he kept going for it. By the time I was tearing up, I suggested that he try the other arm. He told me in no uncertain terms to, "Just hold still! It's not that bad. I am almost in." If I hadn't been tied down to the table already, I think I might have jumped up and smacked him. I don't usually cry during procedures. But this being an already stressful week and having a lot on my mind, I was done for. He finally got the IV set, but it was horribly painful and bleeding badly. The poor radiology tech had to give me a minute to pull it together before we could get started with the MRI.
So now we wait. They tell me that they usually have the results to your doctor within 48 hours, so hopefully by Friday we will know what is up with my kidney and we can cross this off the list. At least now I have had all my organs scanned from top to bottom. Not much else to look at that has vital function past my hips!
The best part about the MRI was the fact that I didn't have to to in head first! Sooooo much easier to stay in the tube when your head is sticking out. My feet are not claustrophobic in the least. My head is apparently the problem. (No comments from the peanut gallery, thank you very much!)
The worst part was the RN who put in my IV for the contrast dye. I went through my usual schpeel with the Radiology Tech and showed him the 'sweet spots' on my arms that usually get used for draws and lines up at OHSU. He checked them out and had another tech check them out. They both decided that they wanted a nurse to set my line.
So the nurse comes in, I give him the lousy vein review and let him know that wherever he wants to stick me is fine and that if he has to take two tries I understand. He then proceeds to run the MOST painful IV stick I have had in years!
I used to be a big wienie about needles and IV sticks. I have learned to suck it up. Most of it is mind over matter. For me anyway. Additionally, with all the sticks, pokes, prods, scans and procedures I have endured in the last year; my tolerance for pain has escalated greatly. This one was ridiculous.
As soon as he stuck me I knew he hadn't gotten in and yet he kept going for it. By the time I was tearing up, I suggested that he try the other arm. He told me in no uncertain terms to, "Just hold still! It's not that bad. I am almost in." If I hadn't been tied down to the table already, I think I might have jumped up and smacked him. I don't usually cry during procedures. But this being an already stressful week and having a lot on my mind, I was done for. He finally got the IV set, but it was horribly painful and bleeding badly. The poor radiology tech had to give me a minute to pull it together before we could get started with the MRI.
So now we wait. They tell me that they usually have the results to your doctor within 48 hours, so hopefully by Friday we will know what is up with my kidney and we can cross this off the list. At least now I have had all my organs scanned from top to bottom. Not much else to look at that has vital function past my hips!
Friday, 19 February 2010
It could be that I am just a little wonky
Hey there.
So I have continued to be lousy at keeping the blog up to date. I guess that means there have been no new developments to report. And that I have been busy.
I am still working as an apartment manager. I FINALLY got all of the units full and don't have anyone on notice to move out. Lets hope that it stays that way for a few months. This job is not my dream job by any means, but it has been a blessing as far as providing a flexible schedule, an interesting opportunity to meet lots of interesting people and lets not forget a roof over my head!
I completed my 6 month bench mark with the clinical trial. I had an MRI last Wednesday and did the entire battery of nueropsych testing again. Apparently my brain is still functioning and located where we last left it. Always good to leave your brain where it belongs! I am still tolerating the medication well and have gotten used to the injections. I don't have much pain the day after injection, just SUPER tired.
Many of my symptoms from this summer have lessened or resolved at this point. Woohoo! I would guess it is fair to say that I am in remission at this point. So now we watch and wait to see if/when I have another flare. Hopefully, it will be a VERY long time out and the symptoms minor. My worst symptoms at this point are the chronic fatigue and the MS banding. The banding seems to come and go. Its worse when I am extra tired or under more stress than usual. The fatigue....well, it just does what it wants. No amount of sleep seems to make it go away. The ADD drugs seem to keep it to a dull roar, rather than an overwhelming need to nap at all times. And I have decided that maybe I am just part shark. Sharks swim in their sleep so they don't drown. I have to keep moving so I don't fall asleep. As long as I don't sit down for too long, I can usually push through with only one nap a day.
I only have 3 more monthly study appointments and then I go to once every 3 months for the duration of the study. Which would be great to have fewer doctors appointments. Apparently my body LIKES seeing the doctors because now I am having weirdness with my kidneys.
At my monthly clinical trial appointments they always do a urinalysis and apparently I have had microscopic blood in my urine for the past few months. Since it isn't going away, I was referred to a urologist who preformed a cystoscopy last week and declared my bladder "pink & healthy". Then she ordered an ultrasound of my kidneys. My kidneys which decided that a mere ultrasound was not enough, they really wanted a full imaging scan. The left one appears to have a "malformation" and I get to have an MRI of it next Wednesday.
My PCP is not terribly alarmed at this point (she got to deliver the news about MRI #4) and says we should just rule anything out, that ultrasounds are sometimes inconclusive, and that sometimes body parts don't look the same from person to person. In other words, I may just have a wonky shaped kidney! I always knew I was unique. I just wish being unique didn't cost so stinkin much.
So I have continued to be lousy at keeping the blog up to date. I guess that means there have been no new developments to report. And that I have been busy.
I am still working as an apartment manager. I FINALLY got all of the units full and don't have anyone on notice to move out. Lets hope that it stays that way for a few months. This job is not my dream job by any means, but it has been a blessing as far as providing a flexible schedule, an interesting opportunity to meet lots of interesting people and lets not forget a roof over my head!
I completed my 6 month bench mark with the clinical trial. I had an MRI last Wednesday and did the entire battery of nueropsych testing again. Apparently my brain is still functioning and located where we last left it. Always good to leave your brain where it belongs! I am still tolerating the medication well and have gotten used to the injections. I don't have much pain the day after injection, just SUPER tired.
Many of my symptoms from this summer have lessened or resolved at this point. Woohoo! I would guess it is fair to say that I am in remission at this point. So now we watch and wait to see if/when I have another flare. Hopefully, it will be a VERY long time out and the symptoms minor. My worst symptoms at this point are the chronic fatigue and the MS banding. The banding seems to come and go. Its worse when I am extra tired or under more stress than usual. The fatigue....well, it just does what it wants. No amount of sleep seems to make it go away. The ADD drugs seem to keep it to a dull roar, rather than an overwhelming need to nap at all times. And I have decided that maybe I am just part shark. Sharks swim in their sleep so they don't drown. I have to keep moving so I don't fall asleep. As long as I don't sit down for too long, I can usually push through with only one nap a day.
I only have 3 more monthly study appointments and then I go to once every 3 months for the duration of the study. Which would be great to have fewer doctors appointments. Apparently my body LIKES seeing the doctors because now I am having weirdness with my kidneys.
At my monthly clinical trial appointments they always do a urinalysis and apparently I have had microscopic blood in my urine for the past few months. Since it isn't going away, I was referred to a urologist who preformed a cystoscopy last week and declared my bladder "pink & healthy". Then she ordered an ultrasound of my kidneys. My kidneys which decided that a mere ultrasound was not enough, they really wanted a full imaging scan. The left one appears to have a "malformation" and I get to have an MRI of it next Wednesday.
My PCP is not terribly alarmed at this point (she got to deliver the news about MRI #4) and says we should just rule anything out, that ultrasounds are sometimes inconclusive, and that sometimes body parts don't look the same from person to person. In other words, I may just have a wonky shaped kidney! I always knew I was unique. I just wish being unique didn't cost so stinkin much.
Subscribe to:
Comments (Atom)