6April2008
Posted by Les under: Blood Pressure; Dr Appointments; computer stuff.
I actually go see cardiology on Thursday, so hopefully they will figure something out. In the mean time, I am not taking the diuretic that I have been on. Yah, so ask me if I am even thinking about posting my weight? Actually depending on when I take a lasix will decide on if I will do that. I am to the point I have started taking half at bed time and half in the morning, just so I am not so swollen. It is not a good thing when I actually weigh less in the evening than I did when I wake up in the morning… after eating all day!
There is obviously a reason I am retaining fluids… and it time for someone to figure this out. According to all the other doctors, there is nothing wrong with my heart… so why do I retain fluid then? The general reason for someone to retain fluid is because they are in congestive heart failure (which is a weird name, cuz it is actually fluid on the lungs…) or a disorder causing swelling in the limbs… but as far as I know, I don’t have any of that. Hopefully I will get some answers.
On Monday (next week) I go and see rheumatology, and hopefully I will get the rest of the answers. K has an appointment at the same time… tomorrow I have therapy… I haven’t seen my therapist since all this happened with K and stuff, so that should be good… and then I have a filling in the afternoon… should be a fun time before I get to go out for dinner tomorrow night. I do plan to go to kickboxing though… get out some of my ”frustration” 
and I am not even referring to any of this stuff
Oh, and I got a bunch of fun stuff for the side bar… although the sad thing is seeing the recent visitor box sitting there empty!!! but you can now click the link and have my updates sent to your reader or I think you can set it up to get an email when I update!!
31March2008
Posted by Les under: Alphabet Soup; Education; General Health; Tests.
Through all the different things going on with K, the more I am seeing myself. Mom and I have said that one day we were going to find a diagnosis that wrapped all of our other issues into a nice little package… and I think we found it. The thing is, we don’t have all of it… none of us do. But I sure do have a lot of it. I am going to use this post as a reference… (and Ken, i know that me looking all this stuff up frustrates you, but I do believe Knowledge is Power… and the more I know, the more I can make sure that K is getting the best treatment she can possibly get).
Wikipedia - Ehlers-Danlos
Hypermobility
The Brighton ScoreI know he gets mad at me looking at this stuff, but it explains so much. According to this scoring system, I have 1 major and 3 minors, which confirms hypermobility.
This is the ED site that talks about how a halter Monitor doesn’t usually pick up anything… this would be me And my sister!
Ken is convinced that I could look up anything and find out that I have the same symptoms. The true test would be what a doctor says.Oh, and I am going to make a list of the different things I have had that are also apprearing to be part of this…
Living with hypermobility - rheumatologyJoint & bone
I know that is driving Ken crazy as well, but this is a place I can track things that aren’t necessarily on my med sheet I take to the doctors, example:
- I had Costochondritis in my 20’s… something I don’t always remember.
- Thoracic outlet Syndrome
- TMJ or should we say TMD I have had this for as long as I can remember. The dentist will use a bite block for me now so I don’t have the problems when I have to hold my mouth open so long.
- Planter faciitis (it was diagnosed when we lived in Cheyenne, so that was only a 6 month period of time for me to narrow it down too… it was 1990.
- Bursitis
Man, I remember I was just out of high school, my friends were trying to teach me how to serve a volleyball overhand, and I woke up crying the next day. The doctor said I had bursitis and to this day, if you touch my shoulder in the right spot, you can send me right through the roof!
- My ‘tennis elbow’ or as I am finding it is called Cubital Tunnel Syndrome basically it is carpal tunnel of the elbow. But the Thoracic Outlet is also a compression issue.
- Joints making clicking noises. Man, I do that every time I bend or turn weird.
Knowledge is Power and God is in control!!
And what is really cool… my Rheumatologist just called me back and he is very familiar with EDS! He asked if someone thought I had it. I said, well, actually, they think my dd has it, and the more I am reading about it, the more I see me in it… and I told her about the hypermobility… and how I have 14 of the 23 things listed as symptoms.
21February2008
Posted by Les under: Ears; Labs; Medications; Weekly Weigh-In; cholesterol.
I went to the ENT on Tuesday (well, we were there on Monday and Wednesday too, but that was for Ken & K and Ken ;)). I got my hearing results… which basically said that I have a moderate hearing loss. Dr. R. thinks that my problem is from extra fluid, so he was going to put me on a diuretic, until we realized he did not have my current medications and I am already on one… so he decided to double it. Well, the other thing is, I got my lab results yesterday and apparently I am dehydrated… cuz my BUN/Creatine ratio is elevated. So, my question is, if I am dehydrated, do they really want me increasing my diuretic and is the hearing issues really from extra fluid in the ears???
My lab tests also showed that I am NOT allergic to Latex. I am not sure I believe that. I will put on the gloves at work again and see what happens. I wonder if I have any around here that I can put on over the weekend? I see the allergist on Monday. I also have a REALLY delayed reaction to stuff, which makes me wonder if they tested stuff once or more than once? The last time I wore latex gloves, my hand broke out that afternoon, and I broke out in hives the NEXT day! Other good part is my Cholesterol is better. The only number out of wack now is the Good Cholesterol and it improved by 6… so I am closer than I was before.
Oh, and I also got my culture from Friday. My PCP basically looked at me like I was insane when I told her that I wanted her to run a culture and see if I had MRSA. I was sure that I was the reason Ken had it. She was sure that the antibiotic I had just finished was the one that they use to treat it. Well, let’s just say, not only do I have MRSA, but it is resistant to the ‘big guns’ that I had just finished. Not that I want to be sick, but sometimes it is just knowing I am not crazy. I just wish I would feel better now. She didn’t treat me because I am not symptomatic, but I still don’t feel good and my face still hurts!!!
I did loose weight this week. Down to 219.4…. which is down another decade…. and almost to my PRE-PG weight. Granted the kid is 10 now… but still 
Only 19 lbs to OnderLand!!!
5February2008
Posted by Les under: Dr Appointments; ENT; GI; Medications; Sinuses; The Daughter; The Husband; Weightloss; computer stuff.
I finally went back to the doctor yesterday. It has been over 2 weeks. She said that the problem with the antibiotic they gave me the first time is that if it doesn’t kick it… that it makes it more resistant, so she had to give me the big guns this time. She asked me if I thought I had a sinus infection, and I was like, ‘UH, YAH!’ (I had just filled her in about how HORRIBLE the sinuses got on Sunday and messed with my equilibrium to the point I was dizzy and nauseous!!! and I couldn’t turn my eyes let alone my head… man that was fun… I had to have the dd looking over my shoulder to tell me when the light changed cuz I couldn’t look backwards to even get us home!!!)
Got to love it when she looks in my nose and said, ‘Oh, there is a lot of crud in there!!!’ I filled her in about all my other appointments while I was there as well. (and on the fact Ken is having surgery and they are talking about surgery on K’s knees too!) She gave me my new Rx, and I stopped and got yeast infection meds on my way to GET the Rx… I said if they are that strong, I am not even going to wait til it is bad… and then last night I got some Activia. (if nothing else, their light has less calories and carbs than any of the other light yogurt I read last night!!)
K is over her stuff, just having an emotional week… and Ken was doing better until yesterday, but the good thing is, his pre-op appointment was yesterday, so the ENT actually got to see how bad it gets for him (and was nice enough to spray him good and open things up!!) Surgery is next week and I think once he gets past the initial pain and stuff, he is going to be able to breathe so much better!
Today should also be weigh in day… and as I was sitting here feeling the horrible nastiness that is going on in the lower abdomen, I realized I forgot to weigh before I ate this morning… the biggest problem with a delay is that I set the TV to come on at 5:30 am and I wake up when it comes on and don’t go back to sleep, so I made coffee and breakfast by 6 AM!!) I will still jump on after I get in the shower… and I know I finally had gotten off 4 of the 5.6 lbs I had gained while sick. I swear I think I am the only person who actually GAINS when she is sick. My friend Jeani was sick over the weekend and lost 6 POUNDS on SATURDAY. I would be so happy… and she ate and still lost!!! She has lost so much, she can’t afford to lose any more. Maybe I need the mouth infection she got back at the beginning of the year…. she lost over 20+ lbs in like the 2 weeks she had it without trying (granted she had been trying before she got it) With my luck, I would gain the 20+
Oh, and HELP!!! a quick computer geek question for someone who is reading here and not at Crayons…. I upgraded WordPress (and have the new upgrade sitting here, I just need upgrade to the host and don’t want to deal right now)… anyway, I have to MANUALLY put in all paragraph breaks… am I missing a button that I need to have checked or something??? Is it just a MAC thing?? (although I am pretty sure I had to do it on the piece of S*@# in the basement). Any help would be appreciated, cuz this is getting old!!! Especially since if I save and come back in to edit, I have to put them all back in all over again!!!!
21January2008
Posted by Les under: Dr Appointments; Narcolepsy; Sleep Apnea; Tests; cardiac.
Well I saw Dr. D on Friday. She said that (like this was any big surprise), she had a hard time reading my test. 1. I do fall asleep faster than the normal person. B. I apparently don’t have sleep apnea, but because my oxygen level drops so low when I am sleeping, that the CPAP does bring my oxygen level back up. but the big one… 3… I don’t go into REM sleep. I didn’t go into REM the whole night or any of the day. So, they don’t know if I am just early narcolepsy or for now, she is calling it idopathic hypersomnia. Basically I sleep a lot and they don’t know why. My question was… Doesn’t lack of REM make you crazy??? and she said we aren’t going there I said this would explain 2 things… A. why I think I only sleep about twice - 3 times a week and 2. When I do, why they are so vivid and realistic that I can tell you every detail.
I have been referred back to the Pulmonologist, which whom I already have an appointment a week from tomorrow. She didn’t even touch the pulse ox either. The part there that I found interesting was that my heart rate range was from 44 - 180. She commented that the pulse ox isn’t real reliable for that. I said, no, but that I had told the cardiologist my heart would race and the event monitor never picked anything up. It sounds like the pulse ox did!!! (by the way, a pulse ox is a monitor that monitors your oxygen level. I forget that not everyone is a Respiratory Therapist and knows the lingo ;)) My resting O2 (oxygen) level before I went to sleep was only 93%, which is not too low, but not real great either. You want it to be above 90%, and being at 7K feet, I expect it to run closer to 90%. I did have to giggle though, cuz my therapist said she had the results and she didn’t know how to read them, and I said, but I do. I am waiting til I see Dr. P, but from what I saw, I won’t be going on O2, unless they take me off cpap. I dropped a couple of times below 90%, but nothing to worry about. Now when I go up to Divide next month and Woodland Park in April, that will be a different story… as I will be at 9.5K feet
17January2008
Posted by Les under: Ears; Karate; The Daughter; Therapy.
So last night at karate, it was so darn loud in there. We only had 5 adults for the family session, and I could not hear a thing. I finally stopped the instructor after and told him, it wasn’t that I couldn’t do what he was saying, it was that I couldn’t hear him. He thanked me for telling him. He said he had worked with deaf students before, so he knows how to make it so that I will know what he is saying. Not that I am deaf, but man, last night I sure felt like it. I don’t like this not being able to hear stuff. I have my follow up hearing tests next Thursday. They only do the tests in the morning, so it was today, Monday or next Thursday… and next Thursday won since Monday is a holiday (and I have kick boxing) and today didn’t happen since K has therapy.
Speaking of therapy, our therapist is leaving the practice. So now we need to pray about what direction we want to go. K has a really good bond with her, so it is a matter of do we want to start over or do we want to follow her. Yah, there are hard feelings going on in that office. I do know that the new office is a lot closer to our end of town, so I am going to look into that. I have them almost all paid up current, so money wouldn’t be an issue either. Personally, the therapist has been more on top of K’s diagnosis than the doctor. I am not sure which way we are going. If it is up to me, I know what I will do, but there are more than 1 factor. Ken is on the same page as me though, so that is good!
15January2008
Posted by Les under: ENT; Ears; Weekly Weigh-In.
So I weighed in this morning. I did lose… down to 224. (I was 225.2 last week I believe) Whoo Hoo!! Only 4 pounds to my PG weight… and 8 pounds to my pre-PG weight. Granted, she will be 10 on Sunday, so it isn’t like I can blame her… but I am thinking I haven’t been that low for about 10 years!!!
I went to the ENT yesterday. They did a hearing test, and apparently I have had a decrease in my hearing since they did my last test (about a year ago). Significant enough that they are doing more testing. I told him that I am just tired of telling K that I can’t hear her or making her turn to face me so I can understand what she is saying! Guess we will see what the next test has to say!
Ken also saw the ENT. We have had him to so many doctors. I finally told Dr. R. ‘he has tried everything!’ And then listed all the different nasal sprays he has tried. We told him about the sinus rinses… and the fact he did the netti pot and the bottle… neither helped. He looked in Ken’s nose and said that 1. he has a deviated septum (guess we know where K got it from) and 2. His turbinates are too big. So, he is having surgery in March!!!
8January2008
Posted by Les under: GI; WLS; Weekly Weigh-In; Weightloss.
Since today is Tuesday and The Biggest Loser is on tonight, I weighed in today. My starting weight last Thursday when we got the scale was 228.8. Today’s weigh in is 225.2 which is a loss of 3.6 lbs or 1.57%. Hey, that is the lowest I have been in probably over 5 years.
Yesterday I went to the GI doc. We got to talking about my weight loss, mostly because the last time I actually saw her… was when she did my colonoscopy when I was trying to get approved for WLS. She had only looked at my last weight, which was only an 11 lb loss… but then when she went back and saw how much I have lost since Dec. 2005, she was impressed. Yah, that would be the ticker!!
Anyway, I can’t believe that today I am sick. After seeing the GI doc yesterday, today I am home with a sick stomach… It really bites!!!
7January2008
Posted by Les under: Karate.
I went to my first kickboxing class today. It was really cool. The cardio part was really kicking my butt, or should I say my legs. I was able to keep up for the most part… there were only a few times that I had to slow down… and I did have to take an inhaler… but that is ok. Especially since I know that if I keep going, I will be able to keep up without a problem!! The part I really liked was when we started the boxing… I already knew 2 out of the 3 we did… from Karate!! I has learned #2 for the big show, and that was the one thing they didn’t change on us. The best part of all was when I put on my pants (the kickboxing pants have a white stripe down the leg… like my belt… which will have stripes through the middle) they were HUGE… and they were the same size as my karate pants when I got those. It felt good being able to take those back to her today and saying, I need a smaller size please :) Oh, and when I put it in the calorie calculator… 1085.9 I felt like it was definitely worth it!
7January2008
Posted by Ken under: Life.
Just checking to see if everything works from Windows Live Writer, if I get the urge to post something from the work computer.How do I look so far?