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Patient Diary -- Jennifer Radley
jradley@gmail.com
Thursday, December 16 2004
Welcome New Diarist
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Tuesday, December 21 2004
Entry 1
Well, some good news today- I checked my mail yesterday and was happily surprised to find a letter form one of two of the senators I wrote to help me with my SSD reconsideration and appeal. So, now I have backing from both- I am very excited and scared at the same time. My appointment with my new specialist in Jan 3 and 7- I have an exercise test, and echo then an appointment- I have never wanted a RHC so bad in my life, lol- but the numbers is what i need to win my appeal. Im still really tired- depressed and having anxiety. My kids are both off because of winter break and they are fighting like cats and dogs making me crazy. I had to take my youngest to the Emergency room yesterday cause they were fighting and he hit the wall with his face and had a bloody nose that wouldnt stop and has a hairline fracture in his nose. UGH! Ok, enough for today.
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Wednesday, December 22 2004
I am getting beyond the point of irritated with my five year old son- he just wont listen to anything or anyone! I signed up for some parenting classes held on Saturdays in January- I need any help I can get at this point to figure out ways to better deal with his behaviors- cause what we are doing now just aint working. He will also been in a separate class for skills. I hope something turns around- he used to be such a sweet heart and now he talks back, wont listen and says rude things to me and his dad- so, counseling and parenting classes. Or, me in the grave from stress- I'm so ready for the holidays to be over, people act like jerks- cant even go to the store to buy milk without dealing with the lovely joys of peoples greed and attitudes gone wacko. I remember a time when Christmas was special- but not anymore. Its about consumption. I went through my closet and found the cloths I cant fit my fat rear end into anymore since my last blast of sudden weight gain- I have lots of nice business attire from when I worked- so I donated that to the Salvation Army, and I have a couple nice warm coats, I am thinking of taking those down the bridge by the river- there are people that kinda live there and maybe there are some ladies or kids that need to keep warm. I would rather give things away to the needy instead of a charity organization some times- cause not everyone had the money to buy the cloths even if they are not too pricey. I cannot wait to have my appointment in Portland- a new specialist. I'm so ready to get new tests done so I can send out the results to the SSD offices and get this ball rolling.
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Friday, December 24 2004
Christmas Eve is finally here- well not exactly finally- this year has been going by quit fast actually. Im just ready for the kids to stop foaming at the mouth. As each day passes, I come closer and closer to my appointment. I swear, I dont think Ive ever wanted a RHC so bad before in my life- I just hope they schedule one for me soon so I can get the results and send them to the SSD office. We have had a blessed holiday- we were able to pull it off for the kids- we didnt think we could do it- but with some sacrifice, some selling on Ebay and pinching every penny- we did it just in time- whew! This is my first holiday away from my parents- well, not being in the same state as them- and its wierd, and sad- I can hear it in my fathers voice. But, they will visit soon, and so will we- once we get on our feet and are able to travel. Im planning on going out there for like a 2 week visit with the kids this summer- the hubby can stay behind and enjoy some solitude- he needs it.
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Saturday, December 25 2004
Well, it's Christmas! Im so happy the kids are happy- whew! Thank God for Grandparents! We have a good dinner cooking, and we are warm- so I feel very blessed. I guess thats all for now- :)
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Monday, December 27 2004
One holiday down, one more to go- I dont want to sound like a scrooge- but this whole process is very long and draining- and Im glad its almost over. Ive been doing some research- and it would be soooo nice to live in Mexico- there are so many beautiful places and the cost of living there is like a dream- I have some friends back in New Mexico where I used to live, and their parents moved down there, kinda close to the Arizona border but right on the coast and they live on their Social Security checks- and live a very good life- thats something you cant do here. Well- im a dreamer.
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Tuesday, December 28 2004
I have my first session with a counselor tomorrow- well first in Oregon anyhow. I hope they will assist me with new medications for my anxiety and panic attacks- I really want to go see the movie "White Noise" the trailer and web site are awesome. I have always been interested in E.V.P- there is a really cool web site too where you can listen to recorded E.V.P's. http://ghostpix.com/ I love thrillers- I love movies that focus more on mind twisting then gore- not into the gore- it doesn't scare me. Noises and weird ghost stuff does- so I'm super excited to see this film, and I love Michael Keaton. Beetleguise is one of my all time favs, Mr Mom too- oh yea, and Multiplicity- see, he is just great! I have not been to a movie in sooooo long- like 2 years I think. We are working on getting a baby sitter for my youngest, my older son doesn't need it, and I think they would enjoy the separation. My husband and I need desperately need to go on a date, or dinner, or something- Well, that's all for now..... I hope tomorrow goes well. ;)
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Wednesday, December 29 2004
Well, I had my counseling appointment today and a pro time- I swear I have at least 2-3 doctor appointments every week! Then on Monday, Tuesday, and Friday I have doctors appointments! I get declined for SSD, but- I don't know one employer that would let me have that much time off for appointments! It was a good session- I feel comfortable with her- and we will get referrals for my medicine- so we need to get that taken care of. Now, I just need to get my butt in gear and get in the gym and get my weight controlled. When I get in, im motivated- and its easier for me to maintain a healthy weight- I just had sooooo much stress this year that it just come on soo fast it was unreal. Well, enough for today-
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Saturday, January 1 2005
A new year begins- washing away the old like fresh spring rain- giving us another chance to do it right and better. I feel refreshed- as everything in my life is new- and I look forward to making this a fantastic year regardless. I will wake up with a smile, thank God for another day, kiss and hug my family, send cheer to my friends and embrace what is due. Leaving the old habits behind- allowing time to heal. Wishing you all a very Happy new beginning.
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Saturday, January 1 2005
Just a Pic of my new home in Oregon
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Monday, January 3 2005
I just got home, from my testing in Portland. I did not see the doctor today, just had an exercise test and an echo. The one thing I HATE about the breathing and exercise testing is- the person giving it! Everytime ive done it, they are like "ok, now, take in a deep breath- now PUSH!!!!!!!!!!!!!!!!" then I do, and they say, NO!NO!NO! YOur doing it wrong! Push it out, like this- and she pushes her lips and blows. Funny, its so easy when they use themselves as an example- but Im like "lady, i got a toilet paper roll in my mouth, IM DOING THE BEST I CAN!" Anyway, even though im a breathing PUSH! failure, I feel ok about myself, hahahaha. I had a nice conversation with the gentleman giving me the echo- at least he spoke, instead of letting me lay there with my boob trying to crawl off the side of the table while he has cold jelly all over me- its like a really bad date, so uncomfortable, lol. So, in a nutshell- I have my appointment with the doctor on friday- so lucky me. I will write how that goes. hahaha, PH, what a heck of a ride.
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Tuesday, January 4 2005
I'm fighting another battle- the battle of FLEAS! My poor pooch- we never had a problem when we lived in New Mexico- and now in Oregon- whoa! They are everywhere! So, I went to the vet and got some frontline and some spray for the house- I have been an itching fool! I put her in the shower and scrubbed her down with flea shampoo, put on the frontline and then had the boys take her for a walk as I sprayed the house- curtains, rugs, beds, everything- and I have to do it again in 10 days. I am so grossed out!
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Thursday, January 6 2005
This may seem a silly thing to be excited about- but my family has been sacrificing so much that little things are really important and exciting to us. My husband and I ordered new cell phones today. We have been using the same old phones for years and never upgraded because of cost. We also changed our service provider- so we are just thrilled to get them in the mail. We needed a service that would go statewide, and we were using cricket for a long time because it made sense for us- but now we need more service- so, we are getting new toys in the mail! Ok, im done jumping up and down- the bill will come then I will be all done with happiness, lol.
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Thursday, January 6 2005
So- I called my Senator today, they wanted me to call them and let them know when I send in my appeal paperwork. So, they sound excited about being involved- I just hope I don't get denied again- But, I probably will- ugh. It would be so nice to get money every month and know for sure that bills will be taken care of. I'm such a nervous wreck when I think about it, that lately, I've pretty much put it outside of my mind- until today- I knew I had to call and let them know so they can help me.
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Friday, January 7 2005
Well, I had my first appointment with my new PH Specialist. I came into the office and waited, a knock on the door and a lady came in- to my surprise- was a student doctor. She told me who she was and what she was studying- and wanted to go through my questionnaire on behalf of my doctor- so I obliged her. Then, she made me very angry- she was going through the physical activity part- and started to question why I had weight gain and why I cant jog or ride a bike any longer. I started to cry. I was so upset, I felt like a lazy piece of crap. I felt like my illness was being dismissed as nothing else than my own un motivation, lack of self respect for my own body, and plain out laziness. She asked me why I was crying, I told her that I used to jog, I used to ride a bike, I used to work out at a gym. She then asked my why I don't anymore- Why? Why don't I work out anymore, why don't I ride a bike or jog? Hmm mm> I wonder this myself, every flippen day of my life! I started to feel that this illness was nor more than "a cold" in the eyes of the medical field I was visiting that day- that PH was no more than a blip on the screen. My Specialist came in and backed up what the "student doctor" recommended to him, that I should exercise more- since my pressures are only between 40 and 50- and that they will see me again in 6 months and then raise my CCB's. No recommendation for a RHC- I am flabbergasted! Is it really my fault possibly that I gained weight? Maybe it is I being lazy..? Maybe my PH is just not that big a deal? All I know is, what I feel. And right now, feel very sad, and depressed.
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Saturday, January 8 2005
I'm getting a little break today- my oldest son is at Wal-Mart doing his Yu Gi Oh dueling or whatever it is they do- so my youngest and I are going to head to Hollywood video and get some movies- I love the MVP pass- ten bucks a month and I can get up to three videos a day with out any extra charge-I love it. I'm getting over what happened yesterday, a little bit. I never had that experience at the Colorado Pulmonary Hypertension clinic- but every new situation has new twists and turns. At least I can be happy that I've been on the same treatment for four years with only two increases in dosage- So, I am very grateful for that. I got some emails that I should have back-up, like my husband- funny thing is, My husband was there, along with my youngest son. We don't have a baby sitter out here yet, so he had to come along- but the examination room was soooooooooooooooo small, that they told them to wait in the waiting room. Ugh. Oh well, I will do things a lot different in July for my next appointment.
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Tuesday, January 11 2005
I know my body doesnt look the way it could- I spent a lot of the day reflecting- maybe the doctors appointment got ot me more than I thought it would. So, I am going to do a plan of smaller meals more frequently throughout the day. I only eat like twice, and it most likely throws my metabolism into a slow churning nightmare. Not to mention I already have hypothyroidism, so- smaller portions more frequently, and I am going to start walking more often- My Princess (my dog) loves to walk, actually, she takes me for a walk- draggin me along the path. Im not going to get depressed over this, I promised myself I would not.
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Wednesday, January 12 2005
Its very late- and Im still up. Ive been having a hard time sleeping the past year. Some months are fine, and others are not, I just watch television or play online to waste the time. Im used to working hard, and now that im not working- and I dont have a total structured day- may be the reason- along with strees. I am so worried about my SSD appeal. I am feeling like my reports may seem that my PH is non chalant- and that its not serious enough to qualify. Ugh---------days pass.
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Thursday, January 13 2005
Today was a hard day- and something I don't really want to expose in a diary- but, this is reality. The reality of living with an illness you cant control, which takes over your body, your mind, and your finances. My husband and I had to take out a title loan on our car. After we were forced to sell our house (or go into foreclosure) and have 2 cars repossessed= now this. I don't take it as hard as my husband does- I grew up differently than he did- All the same, it still stinks- but- the bills don't wait for you, no matter what the circumstance. But, other than that- I still in the same frame of mind. Friday I am going to start my new "workout" regimen. Just some basics, like treadmill and the stationary bike- nothing too crazy. Hope everyone else out there in PHland, is ok.
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Monday, January 17 2005
So far so good- with my new dosage of CCB's. They raised me 30mg- from 60 to 90. The first couple of days I had some swelling in the ankles- but I also drink a ton of water everyday- I just cut it down to half the amount and the took care of it. I feel very lucky, to have been on the same treatment for four years- with only two increases in dosage. Ive had a number of friends go through hell in finding the right medicine, or having to change all the time- get transplants, or just not make it at all. My youngest son and I just finished up doing the dishes- he loves to help me out, he is not the typical male, lol. He has to have hils cloths folded and put away- Ive never seen a boy, especially at 5 years old- he wanted cloths for Christmas! And- and got them, made him very happy.
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Wednesday, January 19 2005
Day two of my workout regimen- I feel good- a bit sore, but good overall. I used to be so dedicated to working out, and I have one of those body types that when I workout, i get toned really nicely- and fairly quickly, but I have to keep at it- cause its gone so fast if I dont. Im staying away from fried foods, and trying my hardest to stay away from anything processed or canned- its just hard because it is sooooo expensive to eat healthy! It blows my mind- maybe we Americans are so fat and have so many heart problems because we cant afford to eat well! When you have to budget- how can you possibly serve 3 meals a day to your family that is fresh? If anyone has any frugel tips- please let me know! I am mainly doing some light circuit training and the treadmill. I dont want to push it. Two years ago I got a bloody nose working out, and I was hospitalized for a non-stop bloody nose- so I am always terrified of getting another one like that. Im feeling pretty good though- now it's obvious to me I needed the increase in medication. I was soooo legthargic, more than usual- and after the increase, my stamina started to build. Im not by any means "normal" in stamina, I can just feel a difference, I actually want to get out of bed and leave the house now. Still no word on my Appeal, although, i did get a letter from ACCESS today- they just need me to hand sign a realse form for the hospital in Portland. Still crossing my fingrs, legs, arms and toes.
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Wednesday, January 19 2005
I got a letter from my Senator today- he said he had spoken to the Operations Manager at the DDS office. Im in the reconsideration phase right now, and quickly approaching one full year since I applied. I pray everyday that this will end up good news- My husband and I get so depressed that we cant do anything nice for our family- no dinners out, no movies, no shopping- nothing. We are litterally living paycheck to paycheck- and are behind on a few things right now- but we are hanging in there. So, I have a Senator, and ACCESS backing me up- Im so confused and lost- they make you feel like your full of crap, that your not even sick! It repulses me- Like I would rather be tired all day and be behind on bills, have cars repossesed, and never be able to treat my family to anything nice, oh yea- that sounds WONDERFUL! Why would anyone fake it? It blows me away.
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Saturday, January 22 2005
It's 4:18am- and I am having another insomniac evening. Every few weeks, I have these spells where I just can't go to sleep- Im tired, but I can't sleep. I would take something, but I am on so many man made synthetic drugs already, I'm not sure how much more pickled and preserved i want to become. Balanced my checkbook today, very depressing, I have a whole 28 bucks to last us 7 days. I went to the grocery store today and spent 80 dollars on the basics- ugh, so expensive- But I promised myself I would not buy the cheap processed crap just because there is a lot and its inexpensive. Still doing my light work outs- Im not a super model yet, darn it. It's been very nice and warm here the past four days, reminds me of Spring in New Mexico. Tomorrow is going to be a rough one, all day with the kids by myself and I have not slept, oh joy!
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Monday, January 24 2005
Thanks to Gail- she sent me the link to my Diary. i lost it while getting rid of AOL- it has made my computer a mess! But now, everything is fine....I hope. Had trouble sleeping all weekend- but I still kept to my regimen. I have been watching Celebrity Fit Club on VH1- It's easy to see that after a few weeks of the hard core, that its much more easy to fall back into the same old habits. Thats why I do everything slowly- if you stop everything your doing, and go hardcore to the gym and with diet, your going to fail. (well, i will anyway) Moderation is the key, to slowly piece by peice cut out the parts of your life that make you the way you dont want to be any longer- I am doing a partial diet, and a slow work out- mainly walking on the treadmill. But, Im not trying to get all built, I just want to tone up a bit and lose some wieght. Get to a weight where that is not the only thing discussed at my doctors appointments. Every big name I grew up with is dying, this Sunday, Carson. Its so weird to me, then to see the "Brat Pack" in their 40's- wow, I remember the Breakfast Club like it was yesterday. My baby fish (did I mention my fish had babies? Well, they did, a WHOLE bunch!) are growing up, there are about 20 left from this batch. There were about 100 eggs, but this is a very successful batch. I was surprised this many survived. The parents are so cute to watch, they are super protective- and its funny, convict parents stay together for life- and these are fish we are talking about! Ok, im rambling and jumping topics, this is a sign I need a nap!
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Wednesday, January 26 2005
Still having trouble sleeping- I was up until 4:30 am- so that makes me sleep almost all day. I dont understand why its so hard for me to sleep at night, but I can sleep most of the day. I hate it, it is such a waste to me. Now, I have to go to the gym tonight, instead of in the morning- I prefer to do it in the morning- so Im tired at night. I know that what I think about most nights when Im up late, is money and what financial state we are in. I gues I am so tired during the day I can't help but sleep. Well, I guess I should try and load the dishwasher.
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