Sunday, August 31, 2008

Tuesday I'm taking J&J over to Oakley to see Dr. Matt and hopefully get an adjustment. He says he'll have to see where they are to know whether he can give an adjustment or if we'll have to go to Ft. Collins and start treatment from the begining.

I originally started taking Justin to Precision Spinal a couple of years ago when I was looking for relief for him. The amazing thing was that immediately upon getting an adjustment, he felt good. In fact Jess heard him say "I feel happy." Unfortunately that good feeling only lasted for a few days. He got treatments once or twice a month. Dr. Matt comes to Oakley and to Hayes Center, NE and we would go there for follow up adjustments. Jess started getting treatments to help with her gall bladder pain and back pain. After a few months the treatments quit giving Justin any relief. I had made the decision to quit taking the kids for treatments while they were testing for Cushng's. I had a feeling that it could lower their cortisol. It has taken a few months after surgery to decide to take them back. I was afraid if they didn't have a cure the treatments would just mask the problem for awhile. If they have a acure I really think it could help them post op. Some people probably think they are quacks. I was also getting treatments because I was to a point where my meds for Crohn's weren't as affective as I would of liked, and I really didn't want to switch meds. Amazing, is all I can say.
For anyone who has been to a chiropractor, I promise this will be a different experience. The best I can describe is that they lay you on your side and press close to your ear. That's it, Well, from the patient's point of view. It's much more precise from the doctor's point of view.

Corrections are made only from the top bone of the spine, the atlas, which
re-aligns the whole spine.

I'm anxious for this appointment.
This post deserves a really BAD photo.
Oh man, I'm starting to feel sick. I've been reading medical blogs of some not so nice medical personnel.
From there I clicked my way to other blogs of equally disgusting medical personnel. They have no compassion. Somewhere in the back of my mind I had an idea of what people think of obese people but to actually see it in black and white is very disturbing. I quit reading. I was actually feeling like I might thow up. How can they put this in black and white.
Now we know how those thousands of doctors that have dismissed the Cushie community really feel. No wonder everyone feels like hiding out.

Wednesday, August 27, 2008

Jess is home from Seattle but hasn't weaned again. I think she'll go to 2.5 mg any day now. She had a good time. I'm glad she went. Now she has to make sure and stay on top of her school work. I think it'll be easier to do this year since she isn't sick.
Justin seems to have no adverse affects from stopping his hydro. Of course by the time he told me about it, he'd already been off it for awhile. If anything I think he acts like he feels better. He says "maybe" so I guess if he does it's slow enough that he's not noticing too much. But I only see him every few days and he acts like he feels better.
Bill has a few more salivas in the freezer. Two more and I can send them to the lab. I sent a jug with him tonight. He never seems to remember to do any testing unless I remind him. Of course I have to pay attention to how he's acting/feeling. If I'm off on my timing, it just upsets him that I'm making him test. I'm hoping we can make it to LA sometime in Oct. for the big tests he needs done. We'll see.

Friday, August 22, 2008

Tomorrow I head to Denver to pick Jess up at DIA. She's been in Seattle on a trip sponsored by Microsoft. Sounds like she's been having a good time. I'm glad. It's about time she got to travel for fun instead of medical issues.
After I pick her up we're going to meet another member of the Cushing's board
( Diane also has a daughter who has had pit surgery. But she has had THREE. Kelsey, her daughter, may make it, it's the start of her college year and may have too much going on. It'd be great if she could make it too. Possibly another couple of members may make it but not sure. I know one hasn't been feeling well and the other has been very busy and possibly not feeling very good either, she doesn't say much about how she's feeling.
I love the times I've got to meet other members. While alot of people in my life are supportive of what our family is/has going through only another member would really understand. And of course as mothers we have somewhat different issues than the patients have. Can't wait to meet her.
There is another mother in Greeley but she can't make it tomorrow. Maybe I can meet her someday also.

Thursday, August 21, 2008

Bill asked me tonight about testing and Tylenol. He's been doing some reading. I KNEW this but never thought about it. He's been taking anywhere from 12 - 16 (500mg) Tylenol a day. This lowers cortisol! Geeze, why didn't I remember that long before this?
Oh well, can't change what's done but from now on he'll take Ibuprofen. Maybe he'll get higher results now.

I work in a photo lab. If I wore this to work I wonder if the customers would understand. I love it. But is it worth $24.95 + s&h?

Justin came by this morning. I guess he & Faith and their roommate Amanada are looking for another place to live. Surely they are tired of moving by now! This will be their 4th place since May of '07. But maybe if they have a roommate to help share expenses and it's just ONE roommate this time it will work out. Amanda seems to be the only responsible one they've had so far.
He did tell me something interesting while he was here at the store. I asked about his hydro dose and how much he was on right now. I know, you'd think I'd know this, but I've sometimes wondered if he'd weaned sometimes without telling me. I guess he did, he quit taking it about a week and a half ago or so. Which means he went from about 10 - 15 mg daily to nothing with no side affects. I had suspected for some time that he'd be able to do that. He says he can't tell any difference in how he feels. He's always said that - never could tell if he did or didn't take it. Except the one time he tried to withhold for a midnight draw, which it turned out we didn't have orders for. He ended up not being able to make it all day. But that was over a month or so ago.
Actually, if anything he seemed "better" today than he had in a while. But I don't see him too much.
Jess is at 5 mg. She said she didn't think she wanted to just drop to nothing from there. So I'm guessing that she'll go down to 2.5 mg when she gets back from Seattle.
So, they've weaned easily - wonder what that really means. Guess it's still watch, wait & pray.

Wednesday, August 20, 2008

I left work early on Monday & Jess and I left for Denver. Her flight to Seattle left early Tuesday. Her flight was about 8:30 MDT. I came home and got to work about 2:00 CDT. I'm sure she was in Seattle before I was back to town.
She posted on her blog evening. Sounds like it will be busy.
Justin started back to work on Monday. I haven't talked to him since then so don't
Know how it's going. I hope it's going okay. I think he weaned again this week & I'm pretty sure he has dropped his afternoon dose. Jess dropped her's a few weeks ago. Justin says he can never tell when he weans so I don't suppose it makes much difference if he weans fairly fast right now.

I wonder how either/both of them will do when they try to go clear off the hydro.
I picked up two more midnights of Bill's on Monday. They were 5 & 5.1. Not diagnostic but definitely not normal. He'll get there, slowly. Trying to decide how soon we can make it back to LA for testing.

Friday, August 15, 2008

Called Esoterix on Thursday and got more results for Bill. Two of the missing salivaries must of been found. Both UFCs were dead middle of the range. The two new salivaries were normal. But, and I feel really stupid about this, one of the results I got back last week was high and I never realized it. So slowly he is getting there.
This photo was taken by Jess during one of our lunches with Dad. The Shack was pretty chilly and we happened to have a hoodie in the van. I've never before seen Dad wear anything, except undershirts and teeshirts, that is pullover.

Lunch with Dad last Saturday was very interesting. Jess was at a friend's house so I was going by myself to take Dad to lunch.
My BIL had to be in Hoxie at 1:00 so I asked if he could bring Dad to town and I'd meet them at Trish's. It seemed like a pretty good plan and it would cut down a little on the driving. With gas prices what they are, that's always a good thing!
So I get to town and notice there are no cars parked in front of Trish's. I know I'm a little later than usual but couldn't imagine that everyone in town was done eating at 12:55. Turns out no one in town was eating out that day. Trish's was closed. So we decided to go up to Stop to Shop and eat at the deli. They were closed too! What's with this town and their eating establishments.
Unless we wanted to drive to another town we were down to just one option. Red's. This is a convenience store built back in the seventies. It was "updated" at some point and the bathrooms no longer had an outside entrance (what did all the teens dragging Main do then) and there was a small game room and booths added on the west side. Red's sells made for the microwave sandwiches.
We got sandwiches, chips and pop and had a decent lunch. Just a little different than what we usually do. Dad had never been in Red's before!!! He needed this experience even if he is 89. It was our snack and bathroom stop when I was in high school.
Probably the best thing about being there Saturday was that someone actually sat down to visit with Dad. I've never figured out what it is, but no one stops to visit with him when we go out. My sister and SIL say the same thing. I wonder if people think they will be breaking into family time. I know it's not because of people not liking Dad. I want to put a sign on the table that says "It's okay, sit down and visit".
So I was very glad that Jack sat down to visit. Jack farms and he and Dad got around to talking about wild marijuana growing on their places! That was interesting. I know that there was usually some growing at certain places along the creek when I was a kid.

I feel like I've been a bit absent from my own life for a few weeks. I found I was getting severely depressed. Normally when that happens I immediately start to think that my Crohn's will soon be acting up. And I would be right, depression is always my first symptom, later the physical symptoms start.
Given all that is happening right now, waiting to see if the kids have a cure, Bill testing, will he stay well enough to continue working so we continue to have insurance, etc., etc., it never occurred to me that this depression was not connected to my personal life. Then some time last week I started getting sick off and on every day. Still it took several days before the lightbulb went off! My Crohn's was acting up. I'm back to taking my evening dose and things are looking better. I had asked Dr. Johnson awhile back if I could take just one dose a day as long as I still felt good. I'd been forgetting to take my evening dose so often that I knew that I could go without it quite often. He agreed, as long as I promised to start taking it again if needed.
Last Monday before I'd started to get any physical symptoms, I'd actually gone out to see Andy and asked for anti depressants. I'd tried Lexapro before with good results. So I was going to try it again. I just cannot believe that this time it never even occurred to me that there was a physical cause for my depression. Me! who always says that I think half or more of depression cases are really just a physical problem waiting to happen. So I guess I'm still right.
And now I'm behind in things I've wanted to get done.

Friday, August 8, 2008

Okay, I'm back to music again. To me music is memories. And I must be in a nostalgic mood. My music runs the gamut from "Little Joe the Wrangler" by Marty Robbins that my dad sings occasionally to "Sharp Dressed Man" by ZZ Top that always reminds me of my friend Tammy's husband. David was a drill stem tester in the oil field, so he kept some odd hours. Quite often when I was at their house in the middle of the day, he would be in his pajamas. I can still see him prancing and preening when this song would come on. If not for this I probably wouldn't remember that he had a pair of plain blue and plain maroon pajamas. I miss them. Tammy & David, not the pajamas!! They live in Wyoming now.
"Build me up Buttercup" by the Temptations is probably one of the first songs I remember from my childhood that was popular. I associate it with fifth grade, I think?
"Cajun Moon" by Ricky Skaggs always reminds me of The Maverick, after work with coworkers. I wasn't much of a drinker but did enjoy going out. One night I remember Chuck, my officemate went with us. He usually didn't but he'd been through an extremely tough period and must of decided he needed to let loose. Who knew that he could dance! I remember dancing to that song with him and it was so much fun. I rarely saw that side of him.
And I can never hear "Walk of Life" by Dire Straits without pictuing the Water Hole. I hung out there with Tammy and David quite often. It was truly a dive but so much fun. I'm sure that song must of been on the jukebox there. The song "That's All" by Genisis also reminds me of them. I spent so much time with their family.
Right now I'm listening to "Heart and Soul" by Heuy Lewis and the News. Sometimes we'd leave the bar early and end up at Maggie & Gregg's house. She was our city editor and usually the first one to round up the gang to go out after work. They had just bought a CD player and this was one of their first CDs. No one else could afford these back then. But I remember we'd dance around the living room to this song. Glad no one was peeking in the windows. I don't think we danced very good!!
"I'll Fly Away" is a great old hymn that I want sung at my funeral. I'm not being morbid. I think it's a very uplifting song. Speaking of music at funerals, we sang "Battle Hymn of the Republic" at my mom's funeral. I bet it was over ten years before I could hear that song without crying. Of course it seemed like we sang it in church around July 4th every year. I felt really silly sobbing into my hymnal. I even heard The Chipmunks sing it and that even made me cry. Oddly though, we had the pianist play "Mockingbird Hill" at the end of the service as we all filed out. Hearing that song fills me with joy as if I'm closer to my mother. Completely different reaction to two different songs.
"Sadie Hawkins Dance" by Reliant K reminds me of Jess & I going to Laura's last May. She had it on her iPod and I decided I really liked the song.
Of course "Walking in LA" by Missing Persons makes me think of our trips to LA for medical care. "Living in Beverly Hills" by ????? also makes me think of those trips.
I think I could revisit my whole life through music. I'll have to revisit this topic.

I called Esoterix today. Bill's UFCs weren't done. There were results for two salivas. Just two? I sent five. Yes, there are just two. I know there were five in the box. Maybe they will show up. The two results I got were normal. I ordered two more kits. Although if we lose three of every five I probably should of ordered more.
There is still a box of jugs sitting in the kitchen just waiting for someone to use them.

I've been scanning old negatives and putting on CDs. It's fun to go back through old pictures of the kids. Made me nostalgic. I miss those little kids.
I know from looking at the photos that Justin was still a little kid in second grade. Pretty skinny then. He & I had decided that it was probably around third grade that he started gaining weight. Too bad we didn't know then what we know now.
Both kids had really straight hair then, except Jess' when I'd used the curling iron.
That makes me think of having to comb her hair when she was little. She'd stand with her back or side to me. When I was finished with that spot I'd tell her to turn. Somehow she always turned her body and left her head in the same place! Never knew how she did that but she always did, right up until she was old enough to do her own hair. Somedays it was funny and some days just annoying!

Thursday, August 7, 2008

I finally got the results of the kids 8 a.m. bloodwork. Have no idea why it took so long. Also got Bill's last midnight. His first one a few weeks ago was low at 3.2. This one was 19.4. ACTH was 31. Makes me happy.
I'm not sure what to make of the kids' numbers. Jess' cortisol was 25.6 and ACTH was 45. Justin's cortisol was 16.3 and ACTH was 33. There is a different reference range listed for Jess (5-27) than for Bill & Justin (7-50). I'd never noticed that before Wonder if there's a different range for males and females? Vitamin D for both falls pretty much in the middle. Justin's testosterone was in range but down there pretty low.
I am curious about the ACTH being higher than it was before surgery. But, I just remembered, I'm not sure we ever did 8 a.m. blood before surgery except for the dex. So I could be wrong on it being higher. I'd only know that if we did midnights.
I guess it's still wait & see. Jess is at 5 mg and Justin is at 10/5. I almost think Jess could just quit at this point but might not be too smart as she has a couple of trips coming up. Would be better to do it when she will be home full time again.
Justin's was higher than I expected it to be. I figured it would be pretty low. Maybe he'll feel better as he weans lower. I find it odd that he has lost weight even on replacements with a normal cortisol.
My boss told me that she and Justin had a good visit last night. She said it reminded her of when he used to come to the store after school. It was encouraging to hear that.
I need to call Esoterix tomorrow and see if they have results to fax to me. I really can't remember how long it takes. And J&J's salivaries went to ACL and Bill's are going to Esoterix. Hope they have some results.

Monday, August 4, 2008

Life seems like a rollercoaster these days. I can't keep track of my emotions. I cry too easily (but just for a bit), I get depressed and get nothing done but read - computer or books. I just want life to settle down.
Jess told me not too long ago that I needed a hobby. Well, I have hobbies, I just don't feel like doing them anymore. I do still do the $5 Quilt. I enjoy it and my theory is that by having to make that one block a month (so I get my next one free) it will keep me inspired to work on other quilting projects. For the moment that's not working so good! But someday I'll surprise myself and end up in the sewing room working on a project.
I haven't really seen Justin for a couple of days. I think he was going to wean again today. I sometimes wished he talked more, then I wouldn't have to guess what is going through his mind. I'd have more of an idea how his weans are really going. He's a bit of a mystery to me lately.
I think he's disappointed that he doesn't feel any better than he did before surgery. I know I am. I didn't expect miracles but was hoping for a little improvement by this point. I guess time will tell. He's about ready to go back to work. The one thing that worries me is his sleep pattern or lack thereof. Sometimes he stays awake for a couple of days and then he crashes for 15+ hours. I sometimes hope that this is "self imposed" but don't really think it is. I don't think most people could keep those kind of hours. Guess we'll see what happens when he starts back to work.

Sunday, August 3, 2008

I received an email from Dr. F today in response to Dr. McC's email. He says we can do an IPSS and adrenal sampling while in LA. Oh boy, Bill will love all this. He also said to continue with the Cushing's workup.
Somedays I wonder where this all will end. I still think I'm right in encouraging J&J to consider adoption. I think the odds are just way too high that they would have children with endocrine problems, whether it be Cushing's or something else. I realize an adopted child could have health problems but in our case I think the odds would be decreased.
Jess & I have talked about it and she says she can't imagine having a child with Cushing's. Just because we know what it is doesn't mean it would be any easier to diagnose. Hopefull in ten years or so there might be some improvement. But only if doctors are willing to implement them.
I'm not sure how Justin feels. He just nods his head if I bring it up!

Saturday, August 2, 2008

I work in a photo shop. Over the years I've seen a lot of law enforcement photos. That I can't really talk about, except maybe in generalities. Most agencies have gone digital and don't always print their photos so we don't see them as often.
I think the most interesting are the drug busts made on I-70. It seems to me that no matter how you try to disguise the drugs, as gifts, part of your luggage, in false pickup bottoms, it doesn't matter, if they call in the drug dogs. They find it all.
The other day the local KBI agent came in. His digital camera broke and he has to wait for the state to get him a new one. So he'll be a customer again for awhile. Most officers are good about telling us if we will find bodies on the film. Thank goodness, there's nothing worse than to be printing along and find a body lying there. One time they told me that the pictures were of an autopsy. What they failed to mention was that the body had been exhumed!!! My first clue was seeing backhoes in a cemetery.
Anyway, the other day the agent brought in some film and told me there was a body on one of the rolls. He said something like "a man and his gun", so I was not preparaed to see such a young man, about 20 or so. It always bothers me to see these type of photos but this time it was really hard.
When the KBI agent came in to pick them up I decided to bring up the topic of suicide and pituitary tumors. I was sure he had no idea. So then we went from there to homicide and pituitary tumors. He did ask me how I'd come to study such a thing! I told him. I don't know if he actually took anything away from the conversation or not and if he did what could he do about it.

Friday, August 1, 2008

The kids did 8 a.m. bloodwork on Monday. I went out today to pick up their results. All we got was just the regular workup. I was a little annoyed as I'd been looking forward to seeing their cortisol levels. We used to be able to do midnights Monday or Tuesday night and have results on or before Friday. So I can't figure out why when they were done first thing Mon. morning we don't have results yet.
Waiting for cortisol, ACTH (but they won't be accurate, Jess said the tubes weren't chilled), Vitamin D and testosterone for Justin. By the time I can get out to get them next week they should have Bill's last midnight results. I'm having a hard time guaging him. I know he's worse and hurts terribly. Wonder if the VitD will help when he still has an underlying problem. It's been awhile since I last saw him guzzling juice by the quarts. I'll never figure him out!!!

Jess got exciting news yesterday. She is going to Seattle with Girl Scouts. Microsoft partnered with five or six Girl Scout Councils in the US to test an online safety program. She signed up and a few weeks ago saw that they were offering an all expense paid trip to Microsoft headquarters for 20 of the participants. She applied and wrote her essay and filled out forms. Yesterday she got a call to tell her she was going! I'm excited for her.
They'll fly out Tuesday, Aug. 19 and come back Saturday, Aug. 23. She's probably glad to be going somewhere for fun! I have no qualms about her traveling by herself to Seattle. The three trips this past year have prepared her. I think she can find her way around an airport. Hopefully no layovers though. And I'm sure she will be met in Seattle. And thank goodness for cell phones.
There will be some sightseeing while they are there. She better take alot of pictures!! It'll seem weird to have her gone with people I don't know. I assume they are trustworthy.