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Patient Diary -- Jenni Messel
jymessel@charter.net
Friday, June 10 2005
A Little About Me
Hello, I'm Jenni. I'm 27 years old and live in the Upstate area of South Carolina. No, the Confederate flag isn't our state flag, nor does it still fly over the statehouse. I live with my soulmate, David, whom I married in 2004. For my first diary entry, I wanted to share the journey leading to my PH diagnosis. I don't want to hash out the repeated misdiagnoses, ignorant pulmonologists, frustrations and all of the experiences that so many of you lived through yourselves. So, I'll try to be brief in that respect. :o) In early 2003, I worked a full-time job while attending college full-time. I am a Psychology major. It is my eventual plan to work with the families of alcohol and drug addicts. As someone affected by the addiction of others, well quite a few others, I certainly feel like I'm bringing experience to the table. When I first started to have trouble breathing, I wrote it off to stress. Sure I needed to slow down, but I didn't have time to slow down. After seeing my Primary Care Doctor, a pulmonologist, an asthma specialist, an internist, two ER doctors, and having tons of tests come back 'normal' over the majority of 2003 I was really beginning to think I was just 'crazy'. After a visit to the ER for unbearable chest pain, I was admitted to have a heart cath done to follow up a sketchy ECHO. My PA pressures were 93/50. The cardiologist said I had Pulmonary Hypertension and probably less than six months to live. I had never even heard of PH and now it was going to kill me? I'm not the type of person to hear something and just accept it as is. I fought my way to the Medical University of SC and eventually found a PH Specialist that with Tracleer and Remodulin saved my life. 2003-2004 was a very rough time for me. Well, except the getting married part - I married the man that I love with every fiber of my being, so that has been fabulous. I was able to fight back from the 'grips of death' and have learned so much along the way. I have returned to some of the activities that I thought I'd never be able to do again. I just went back to school, to pick up where I was forced to leave off in 2003. I should have my credentials for substance abuse counseling this time next year. I'll start as a counselor for addicts before moving into a position to counsel families of addicts. A few months ago I began organizing the first PH Support Group in South Carolina (at least I'm told it's the first). Our first meeting is a week from tomorrow. I'm really excited about the potential of the group and about meeting other PH patients face to face. Since I'm in the early stages of support group leading, I plan to devote much of my future diary entries to tracking the progress and activities of the support group. There may be someone that wants to start a support group, but doesn't know how. I hope my diary can possibly help.~ Jenni ~
Comments:
Jo Williams - January 22, 2007
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Hi Jenni!
What a pleasant surprise to see you here! I'm so happy you are doing well, or at least you WERE at the time of posting.
I tried so hard to attend the meetings in Greenville and Columbia, but my body senses that I'm going "out" and it opts for the hospital instead.
I really have not been doing well since my step-daughter was murdered in June. She was only 23. :( I have already suffered the loss of my daughter to a car crash, so this has been doubly tough.
Keep up the good work! Who is your PPH specialist? I'm currently seeing only Dr. Gregory Feldman in Spartanburg.
Jo Williams :)
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Friday, June 17 2005
Tomorrow Is The Big Day
Tomorrow is the first meeting for the South Carolina PH Support Group. I'm actually a little nervous, but very excited! I've been working really hard over the last couple of months or so. Finding a location, a speaker, getting the word out, lining up food, and all that jazz. I hope everything comes together well and that everyone has a good time. I've received RSVPs from about 25 total (patients and their loved ones). This is shaping up to be a good sized group. Last week I met someone that will be attending the meeting. I told him that I was happy to hear that he would be joining us. He smiled and said that he wished he wasn't. (Gee, I hadn't thought of it like that.) It sucks that we all have a reason to be attending a support group for pulmonary hypertension. I guess I've been so excited about meeting others with PH, that it slipped my mind that a crappy disease is what brings us together. We'll try to make the best of it! Please think of me about 1:00 Eastern time - I'm pretty nervous about speaking in front of a group. Public speaking has never been one of my strong points, so I may just freak out and run for the coast. I'll let you know how it goes.... :o)
Monday, June 20 2005
Good Times!
The first meeting of the South Carolina support group is over now. All of the planning and nail biting paid off, because I can report that the meeting was a tremendous success! We had around 30 people in attendance. About half of those were PAH patients, and practically everyone came with a guest. Dr. Charlie Strange, a PAH Specialist from MUSC, was our main speaker. He gave two talks - the first was "What is PAH?" and the second was "Treatments for PAH". Everyone thoroughly enjoyed both sessions. Dr Strange is an incredible speaker with amazing humanistic qualities. Truly a good person! We also had a respiratory therapist from a local O2 provider speak about portable O2 and answer questions about travelling with O2. To finish up the meeting we had an outstanding brainstorming session for the future of our group and what we'd like to get out of future meetings. Accredo Therapeutics graciously provided lunch for us. Their involvement also contributed to the success of Saturday's meeting. I want to close with how I was indescribably moved by the experience of Saturday's meeting. Being in a room full of PAH patients much like me, that until Saturday felt alone and isolated really affected me in ways I never imagined. It never felt like I was surrounded by a bunch of sick people, but more like becoming part of a group of amazingly genuine and caring people. People that were just estatic to be in the company of others that could relate to their situations, to their triumphs over and their struggles against PAH. I was completely overwhelmed by the joy in a person's eyes upon finding someone like them, and by my own happiness in finding an entire group of people like me. Oh, Good Times!!
Tuesday, June 21 2005
6 Minutes of Fame
At our support group meeting on Saturday (see my earlier post for details of that), we brainstormed for an Awareness Month event that we could all plan together. Everyone tossed out some really great ideas. We are looking at a doing one of the PHA Fun Walks and closing the day with a benefit concert and raffle. The proceeds will be given for PAH Research. That was just where we particularly wanted our funds raised to go. Research gets us closer to a cure! Well, we also talked in detail about the fun walk and how we wanted to proceed with the planning of that. The length of the walk was a common concern. Some suggested a 1/4 mile, others suggested a 1/2 mile. Then someone had an amazing idea. Instead of focusing on the distance, why don't we do a Six Minute Walk? I'm sure most everyone reading can relate to the importance of a six minute walk in our journey with PAH. I have to do a six minute walk test at every check-up, as I know many others also have to do. Why not incorporate something as universal among PAHers as the 6-minute walk? Everyone loved the idea, so we will move forward from that. In November we'll all have "six minutes of fame"!
Wednesday, June 29 2005
The Pressure
I'm a little bummed out today. I got the results of my ECHO done during my June 6th check-up. My pressures are up. I know that I'm feeling great, my shortness of breath is practically gone, and my stamina is much better - but - I guess I had expected the pressures to have come down. The doctor said not to worry about the pressures at this point, since I'm (symptomatically) doing so well right now. Anyway, on a much better note - David returns tomorrow from Germany. He's been away on business for about a month and a half. Whew, I'm already so excited about seeing him tomorrow that I can't even concentrate on my work for class. Thank goodness I had already taken my exam yesterday before I found out he'd be home tomorrow! :o)
Wednesday, July 20 2005
Finals Are Over...
and I made it out alive! I have finally reached a long-held goal. See, I "walked" for my Associate of Arts Degree before being diagnosed with Pulmonary Hypertension. It turned out that due to an "oversight" on my part I was actually a credit or two short for my degree. PH took over and I wasn't able to finish up the remaining credits at the time. Now, two years later, I have completed what was needed to finally get my AA degree. I'm so proud of myself (and I don't say that often!). Now, even though finals just finished up, I am working on my registration for Fall Semester. I am only taking one class in the Fall, for a few reasons. We're planning the PAH Awareness Month fundraiser (which I have very little to report on now - still looking for a location), my political party responsibilities have been stepped up as our county chapter looks to reorganization, I'll be doing some traveling this Fall, and the list goes on... I'm just trying really hard not to overextend myself. I've had problems (pre-PH) loading up on so many projects and things that before I knew it I was permanently in over my head. That is...until PH slowed me down. Well, that's all I have now. I'll have more to report later this week as I get more information back on potential locations I've contacted for the Fun Walk.
Saturday, July 30 2005
Planning A Fun Walk
How do you plan a 'Fun Walk' that is actually fun? I'm beginning to realize that it isn't as easy as I thought it might be... This week I located a perfect spot for our November Fun Walk for the Cure. It's at a local University, the space is being given at no charge, and it's just a perfect spot to have a fun walk. There's a catch, though (well, isn't there always?) .... The University will not allow us to do the benefit concert or raffle that we're planning to put on in conjunction with the walk. It boils down to the idea that the University feels it can not control the content of something like a concert put on by an outside group. That's all fine, and I feel like we have a few options for locations to hold the concert and raffle after the fun walk. BUT - Now, what are we supposed to do for entertainment during the fun walk? I'd dance a jig, but I don't think I have the air to entertain that many people. :o) I have been brainstorming about this and nothing! I don't know if it's the humidity, or if I've just tapped the idea well dry, but I am coming up empty on this one. I will sleep on it and hope I come up with something groovy and exciting. My love is in Florida on business today. A major part of his job requires him to be available on short notice. I understood that long ago, but I still haven't made peace with just how short the notice can be. Sometimes he may get an hour's notice for a trip that will take him out of town for a week. I hope one day I learn to go with the flow more easily and maybe the short notice won't bother me as much then. At least I could spend the evening with someone that understands..Tonight I had a fabulous evening with my good friend 'A'. Dinner and a movie. We saw "Must Love Dogs" with Diane Lane and John Cusack. I love John Cusack... High Fidelity, Midnight in the Garden of Good and Evil...great actor. The movie was a perfect "girlie" movie, too. We had a really good time. 'A' and I have known each other for years, and we have always gotten along perfectly. Although in the beginning, we didn't spend much time together and it wasn't until we were about 5 years into the acquaintance-ship that we really gave each other a chance. I'm so glad we gave each other that chance. Well, it is late and I can hear my pillow calling me..... Good Night!
Sunday, August 7 2005
Upping The Dose
I'm not feeling well today. Actually, I haven't felt well in a couple of weeks. It worries me a little. For months, I've been great..no chest pain, very little shortness of breath, no fluid build-up..just great. Once I seemed to get to a therapeutic dose of Remodulin, most of my symptoms improved dramatically. Now suddenly, I have the sensation of a big, fat elephant sitting on my chest and some trouble breathing again. I called my specialist about all of this last week. We decided to increase my Remodulin. I've increased a little bit each day for the last three days and don't really notice much of a difference...well, I notice a small difference. I'm supposed to increase one more day before I reach the dose my doctor and I agreed to stop on. Hope this works.... In other news, my friend E and I had a very successful brainstorming session yesterday for the Fun Walk. We've come up with a ton of great ideas, but now that means we have a ton of work to do. I don't really mind any of the work - it's just things like phone calls, letter writing, e-mail, etc - easy stuff. This all makes me feel like I'm making some sort of contribution. For a long time, I've felt like I'm not contributing anything to anyone. When I had to stop working a full-time, paid job - it was incredibly hard for me to deal with. At least when I was working, I felt like I had a reason, ya know? It wasn't until I became involved with the support group and planning the fun walk that I was able to feel like I made a contribution again. Now that I've said it "out loud", it sounds silly, I guess.
Wednesday, August 24 2005
Off To See The Senator...
Well, not the Senator - a member of his staff. I tried to make an appointment to see one of my United States Senators today. I was told the Senator isn't available. He isn't available for anything this week, next week, or at all really - before he heads back to Washington in September. Even when he's home, he's traveling! So, I settled for a staff member, with whom I'll meet tomorrow. I want to discuss something that will help improve the PAH community. You see, the Pulmonary Hypertension Research Act was recently reintroduced to the US House and is expected to be introduced in the US Senate this fall. The Act will do great things for us, as PAH'ers. It will authorize money (to the tune of $50 million over each of the next five years) to expand research, establish three "Centers of Excellence" for PAH, and set up a data system at the National Heart, Lung, and Blood Institute. With these steps being made to increase and improve research, the road to a CURE seems a little shorter. I have two other "voices in Washington" to see. A Senator and a US Representative. In South Carolina, we are represented by 2 US Senators (like every other state), and by 6 Representatives to the US House. Three of the six SC Representatives signed on as co-sponsors of the Pulmonary Hypertension Research Act. My district representative did not sign on in support, and that just won't do! I'll be talking to him (or most likely a member of his staff) about that when I finally get an appointment with his office. In other news, my thyroid is out of control. Last month my levels were extremely low. This month the levels are extremely high. So it seems my racing heart and slight shortness of breath weren't just caused by the miserable humidity we've had here lately. I've increased my thyroid medication, so I hope it helps. I just returned from a week in Pittsburgh, PA. David was there for work-related training, so I tagged along to see a place I'd never visited before. No, it's true, until last week I had never traveled to the Northeast US. Actually, until this past year, I had never been north of the Virginia - NC border. (Last summer I spent two weeks in Milwaukee). I've lived in the south all of my life. But I digress.... Pittsburgh was great! I think the most unbelievable thing was the fact that you can't see the skyline of the city driving in from the south. You drive through the Fort Pitt Tunnel and as you exit the tunnel - wham! - there's Pittsburgh. I thought it was amazing. I'm off to my Coumadin check. Hope I'm where I should be!
Thursday, September 1 2005
Glad The Weekend Is Almost Here
This has been a busy week. I have pretty much everything lined up for the next support group meeting. The meeting is October 1 at the same Hospital where we met last time. The Dining Room that is donated to us for our meetings was a little cramped last time, but I think with some creative furniture arrangement it could be roomier. I have the speakers lined up. Our main topic this meeting is "Medicare - What We Should Know". There will be a speaker joining us from the Social Security Administration, and a speaker from the Lt. Governor's Office on Aging. Both are trained in Medicare information and are ready for all of our questions. (I've warned them that we have plenty!) I didn't know this when I started planning the meeting, but on the Social Security Administration website you can request a speaker to come to your group meeting to talk on any related topic you wish. They will speak on Disability, Retirement, How to Apply for Disability, Medicare, etc. The man that contacted me from SSA was very helpful. He will be speaking at our meeting and he referred me to the speaker that will be joining us from the Lt. Governor's Office. He said she knew more about Medicare than he did! I know practically nothing about Medicare, so I really can't wait to hear what they have to say - especially with the changes taking place in January. I've also asked the Director of the PH Clinic at the Medical University of SC to speak. She'll discuss Scleroderma and why it causes PH. I think this will be a good session for our members that have Scleroderma. The flyers have been mailed out. Lunch is being provided by Priority Healthcare. I've checked my supplies and other than a few minor things, I think I'm ready for the meeting. I hope it goes well.... I saw a Thyroid Specialist yesterday. What a NICE man! I think he and I will get along just fine. He increased my Tapazole dose to 20mg a day from the 10mg I have been taking. He thinks this will work. If not, he wants to discuss Radiation Iodine Treatment (not sure I've identified that procedure correctly) or Surgery. He'd like us to stay away from Surgery - which I'm certainly happy to hear. I'm off to relax now....Whew I'm tired.
Friday, September 30 2005
Confusion Among The Illnesses
Before PAH came along and took over, I had never really been sick before. Sure, I'd have the occassional cold, strep throat, or even the flu - but I had no chronic health problems at all. Since being diagnosed with PAH, I've also been diagnosed with Sleep Apnea and Hyperthyroidism. Lucky me! The wonderful thing about hyperthyroidism, is that many of its symptoms are the same as the symptoms of PAH. Chest tightness, heart arrhythmia, trouble breathing, fluid retention, etc... all are symptoms of your thyroid hormones being out of whack. The past several days I've felt really bad. My heart isn't beating the way it's supposed to - it speeds up for no apparent reason, my chest tightness is back and I've had more trouble breathing that usual. Is it Thyroid or PH? Should I call my General Practitioner, my PH Specialist, or my Thyroid specialist? I've accumulated such a crowd on my team of doctors that I don't know which one to call - haha! I just decided to call my GP and the Thyroid doc to rule out my thyroid between them, before I call my PH Specialist. Hopefully between the three we can figure something out. The support group meeting is tomorrow. I've gotten my pre-meeting jitters already. I just hope I'm feeling better tomorrow. I've really been looking forward to the meeting, so the least my body can do is act like it! :o)
Sunday, October 2 2005
Sadness
We lost a member of our support group this week. Jane's husband called me on Friday to let me know that she had passed away. Until Friday, I had not personally known anyone to lose their battle with this nasty disease. Even though I didn't have the opportunity to get to know Jane very well, I've been saddened immensely by her passing.
I'm sure that somewhere in the back of my mind I knew that we'd eventually lose a member of our support group. The ages of our group vary so greatly and we are, of course, all dealing with a wretched, wretched disease. I guess I just hadn't prepared myself for the time that we'd actually lose one of our own. I wish I'd had a chance to get to know Jane better, as the wonderful person I'm sure she was - more than just a support group member. May you breathe easy now, Jane.
Thursday, October 6 2005
Anniversary
On October 3, 2003 I was diagnosed with PAH. I was told to "get things in order and not to get pregnant" because I wouldn't be alive much longer. At best, it was expected that I had six months left. Well, it's been two years and three days, and I couldn't be happier that that doctor was wrong. This weekend we're having our close friends and family over to celebrate. We did this last year, too. It's becoming a tradition. I'm hoping the tradition continues for many years to come. We have a busy weekend ahead of us. On Saturday morning I have to go to the Fairgrounds and help set up the booth that my political party group and I will have at the Fair next week. I've been looking forward to the Fair, for the most part, but I'm a little apprehensive about having enough volunteers to man the booth all week. Saturday night is the big CD Release Party for David's band. David plays lead guitar in a local rock band. They recently did a compilation CD with two other local acts. All 3 acts will be playing Saturday night for their formal CD Release. I'm really excited for them! Then on Sunday we're having my "PH-iversary". Yaayy! I'm taking it easy during the day on Sunday so I can really enjoy the company of my loved ones for dinner on Sunday. We're also keeping dinner really simple. David is so great and understanding, so he's doing most of the cooking. (Sorry, Ladies - He's taken! :o) I hope to have some time to rest during the day on Monday, before the Fair starts at 4. I have to be there on Monday to open the booth up, since I'm basically in charge of this shindig. Looking at the calendar, it looks like I'll have a good bit of time to rest sometime in mid-November. But, I'm not complaining - I'm having a great time!
Wednesday, October 19 2005
Politics
I am the County Chairperson for the political party I'm affiliated with. When I took this "job", I knew it would be rough. The county chapter has been inactive for quite some time and I'm supposed to lead the effort to get the chapter active again. Well, I had no idea that I'd be doing things by myself! Last night, I headed over to the library for our October business meeting. I wasn't in much of a meeting mood - I had just changed my Remodulin site, and I was having a good bit of site pain. When I got to the library, I set up the room for a meeting and sat down to wait on the others. The others never came. I waited half an hour - longer than I would have given a college professor to show - and packed up my things to leave. As frustrated as I am with the situation, I can't say I'm surprised. Everyone wants to see the county chapter reorganized, but I seem to be the only one that's willing to show up for a meeting. Maybe my frustration would be less, if I hadn't just spent a week at the Fair trying to promote this same political party chapter. I had a few volunteers, but they all came from neighboring counties. No one from our county showed up to help. Writing this diary, I feel like I'm just venting and complaining. Maybe I am. Although, it really comes down to the fact that I'm unsure of where to go from here. I believe deeply in what I'm doing, but I could use a little help. What to do? Do I just keep trudging on, the way I've been doing for the last few months? Or do I throw up my hands and run for the hills? The leaves are starting to turn. The hills don't sound so bad.....
Comments:
Christy Hix - December 2, 2005
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Hi Jenni,
Your diary has been such an inspiration to me. I'm 36 years old, and just got married in Sept.05. I have PAH. I'm doing real good right now. I work for a law firm full time and keep myself busy to try to keep my mind off of things. I think I'm in the denial phase. Please don't give up, what your doing is so very noble!! I wish I could go to you support group, but I live in Oklahoma City. I would love to keep hearing your stories...it helps.
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Tuesday, October 25 2005
Motivation
My motivation is shot. I have no desire to tackle any of the things on my 'To-Do' List. This is a busy time of year and there are so many things I need to work on right now. I need to do support group stuff, Fun Walk stuff, classwork, and there are quite a few people I need to call about one thing or another. I haven't really been keeping up with e-mail like I normally do, either. I don't know what my problem is. Well, actually I have a pretty good idea. I can honestly say that I haven't felt well, I mean as good as one could feel and have PAH, since July. July is the last recollection I have of a really good PAH day. Over the summer, when my thyroid was under control I felt spectacular - Probably the best I'd felt since way before diagnosis. Lately though, there's been shortness of breath, chest heaviness, and good ole fluid retention. My thyroid doctor said that it takes 4-6 weeks for the medication to really kick in. Holy macaroni and cheese, Batman, hasn't it been 6 weeks yet? Every month I do a newsletter for the support group. It usually recaps the last meeting or last event, and covers one or two issues of interest to folks in our group. Last month I included an article on Anticoagulants and tips to remember. I think the month before I did Hurricane Preparedness and making arrangements with Accredo, etc for severe weather situations. I'm not sure what to include for October...maybe low sodium diet tips? The holidays are coming, maybe I should do something about remembering to watch the sodium when we're loading up on turkey, dressing, and mmm mmmm gravy. The month is almost over. I can't believe I haven't finished up the newsletter yet. I'm really lagging behind, and my thyroid isn't helping.
Monday, November 7 2005
Traveling & Living
If I look out the window I can see a river in the distance. I'm not sure if it's the Allegheny River or the Monongahela River. I think it's the latter. Sitting in a hotel that's in the heart of downtown Pittsburgh comes with a fabulous view. David is in town on business and I'm in town relaxing. I think we should try to check out a restaurant that's nearby tonight. They advertise Korean cuisine and sushi. When David returned home after spending two months in Korea during the summer of 2002, he raved about Korean BBQ. Hearing him describe it, I was a little skeptical. I mean, Korean BBQ ? Well, once I tried it I was hooked! It's so yummy! Hopefully, he won't be working late tonight and we can check out this restaurant. I'm glad I decided to tag along on this trip. David has been working away from home, in different areas along the east coast, so much lately. I've been tied up with support group events and planning, Libertarian events and meetings, and just the stuff that makes this time of year a busy time of year. We really haven't been able to spend much time together over the last few weeks. This is actually the first time that I've been able to tag along on a business trip since August. Even though he works during the day, we can spend the evenings together, away from the hustle and bustle of home. :o) The SC Fun Walk was this past Saturday. We had about 40 people show up to participate and we raised a nice little chunk of change. The support group decided to donate the money raised to PHA in memory of Jane, the member of our group that lost her battle with PAH in September. Jane's husband joined us on Saturday for the walk and I'm so glad he did. I just hope that he is pleased with our efforts. Overall, I thought the day turned out well. We also had a handful of PAH'ers show up because they weren't aware that a support group existed here. It was great to add some members to our support group family! On Saturday, I also met one lady that was diagnosed recently, but her pulmonary doctors told her that there was nothing they could do for her. They didn't even attempt to refer her elsewhere. This lady was the second patient I met last week who saw the same group of pulmonary doctors and was handed the same line of bull. These two ladies aren't alone though. For every person I speak to, PAH or not, that saw a doctor in this particular practice, there is some sort of horror story associated with their treatment. Misdiagnosis, poor treatment, and just plain baloney abound in recollections of these doctors. I'm not sure how to address this situation, but something needs to be done. This pulmonary practice is becoming a true danger for patients in this area. I believe I'm going to contact the state medical board about this. In other news, my thyroid medication seems to be catching up with my thyroid. I haven't felt quite as yucky as I have in the recent past. I hope this keeps up. With winter coming, (a rough time of year for breathing where I'm concerned anyway), I'd like to be in as tip top shape as one can be with PAH before it gets cold. This weekend is Santa Shoppe. The Junior League puts this on every November. Specialty shoppes and unique vendors set up booths at the auditorium, along with Christmas decor stores and Christmas related businesses for Santa Shoppe. It's three days of shop-til-you-drop and get prepared for the Christmas season whether you're ready or not. I can't wait. I go every year. Although, I think I may go on Friday this year to beat out the Saturday crowd. It will still be jam packed, but not quite as bad. I'll let you know if I make it out of Santa Shoppe alive!
Monday, November 21 2005
Visiting Family
Even though my diary is lagging behind, things have been good here. We've been busy, but not overwhelmed - which is really, really great! This weekend David and I made the journey to visit my family. With the exception of my mom and brother, the majority of my family lives in North Carolina, about a three hour drive from where I currently live. It's all Interstate driving, so the drive usually flies right by. It was a nice visit. We didn't tell anyone that we were coming. On Thursday of last week I called my father, my gramma, and my granny to make sure that they would be home on Saturday. I told them each that they needed to be home early afternoon on Saturday, and to expect a "gift". They were so surprised to see us! I love surprising people. I'd throw a surprise party for David's birthday every year if the novelty wouldn't wear off. LOL We're getting ready for Turkey Day around here. I'm making my special turkey for Thanksgiving dinner at David's parents. The very first Thanksgiving that David and I were together, we invited his parents, his brother and sister in law, over for dinner. We hadn't lived in that house long, so we had no idea that the oven wasn't working! (We had only used the stove.) Well, I tried to make my special turkey but the broken oven ruined my plans. We ended up grilling the turkey! It wasn't bad, but it wasn't what I had intended. David has been trying to get me to make turkey again ever since. I'm finally going to try again this year. :-) We'll be eating turkey at my parents' on Friday. My family always celebrated Turkey Day on Friday. It was a compromise that started nearly 15 years ago when my mom married my stepfather. His children spent Thanksgiving day with their mom and Thanksgiving Friday with us. The tradition stuck, even after we had all moved out, so we continue to observe Thanksgiving Friday. I hope I get to see "Moo" on Thanksgiving. "Moo" is my year old niece, Madison. I nicknamed her "Moo" shortly after she was born and that is how I address her. It wasn't because she looked like a cow, or made mooing sounds when she slept, I just wanted something that no one else would copy. I hope everyone has a very Happy Thanksgiving! Enjoy lots of good food and good company! :o)
Friday, December 2 2005
To Be Or Not To Be...
When I graduated from high school (cough) several (cough) years ago, I wanted to be Mayor. Somewhere along the way I decided that there was laundry in my family closet that I didn't necessarily want "hung out to dry", if you know what I mean. I'm still involved in politics, but I don't plan on running for office. So, I considered changing my major from political science to psychology. I have completely covered the spectrum in possible careers for a psychology major. First, I wanted to do serial killer profiling for the FBI. Then I wanted to work with children from bad, or just broken homes. I considered counseling inmates in the prison system. For a while, I wanted to go all the way in school, and become Dr. Jenni, M.D. of Psychiatry. I gave much thought to becoming an Art Therapist. Finally, I wanted to become an addictions counselor. Lately, I've realized that I don't actually know what I want to be when I grow up. Next semester I'm going to take some time off and explore my options. I'm going to take an art class. I'm thinking of taking voice lessons or learning to play another instrument. I've contacted a few organizations about possible volunteer work that would expose me to different areas that I might be interested in making a career. I'm also going to meet with a career counselor and discuss other jobs that maybe I haven't thought of. I've found in my work with the support group that I really enjoy all of the planning that goes into events and meetings. Maybe becoming a pro event planner would suit me? Who knows? ! Eventually, I'm sure I'll find something to do. I'm trying not to let it get me down, but I feel like I should be working towards something. In other news, my mom and I visited my brother today. He was in good spirits and we had a nice visit. It's always better when he's in a good mood and we can enjoy the visit. After seeing my brother, my mom and I went out for a little shopping. Tonight, David and I are planning to go see a movie. I can't decide between Rent or Walk The Line . Last week we saw Harry Potter & The Goblet of Fire . The week before we saw Jarhead . We'll probably see Rent because it has fewer show times and doesn't look like it will stick in the theatre here very long. Walk The Line still has about twelve different show times. You know, I thought Johnny Cash had passed away - but I saw him on TV last night alive and kicking. (Guess I wasn't paying attention at some point.) Tomorrow night, we're going to an event called BYOA - Bring Your Own Art. It's a non-commissioned art show. Local, up and coming artists can exhibit and sell their work, but not pay a commission. It's been announced that around 30 artists of different medias will display their work. A couple of people we know will have work exhibited, so we're culturing ourselves this week in support of folks we know. :-) I'm excited about the show tomorrow. The art scene in my area is a little small. You really have to travel to a larger city nearby to get a feel of an artsy community. However, some local organizations are trying really hard to change that. Tomorrow's event is sponsored by one of those organizations. It's getting close to David's quittin' time, so I should probably make up my mind about a movie. I should probably also stop trying to eat my weight in these yummy white chocolate covered pretzels from 'Harry & David's'! At this rate, I'll be lucky if I have room for popcorn - let alone dinner.
Comments:
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Jenn - Thank you so much! I knew he had passed away, and I was pretty sure it had been around the time that June passed, but when I saw him on TV the other day it threw me off. It must have been old TV footage - Ha! :-)
Cheryl - I've always felt that taxes were too high and that government officials do too much to take away our freedoms but not enough to protect our freedoms. I guess I felt that I could get in there and somehow rattle the system to a point that people could actually be happy with their elected officials. Wishful thinking...
Marcine - Thank you very much for your kind words. If I ever decide to run for office, I'll be happy to provide you with my papers on agenda and positions. :-)
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marcine - December 3, 2005
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Jenni,
My dear young lady, based upon your diary entries, I believe you can be anything you want to be--when you grow up.
However, if you decide at some point to run for the presidency of the U.S.--before giving you my vote, I will need more information. :-)
I enjoy your enthusiasm...
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Cheryl - December 2, 2005
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Jenni, I don't think I've ever known anyone who wanted to go into politics! You'll have to tell us what motivated you (cough) to aspire (is that the right word?) to public service.
I've never thought to run for anything although I did a little stint here in the neighborhood, but apart from my family skeletons, I also pay my housekeeper cash and pay no taxes for her so I'm OUT!
You seem like a very smart and capable person. Perhaps it's best that you did not go the political route... :-)
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Hey Jenni.. I want to see both of those movies too.... one thing I had to comment on though, is that Johnny Cash is dead, and he died back in Sept 2003... so what you saw must have been a repeat, and that you were paying attention! lol..
Jenn
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Friday, December 9 2005
Eagle? I Thought You Said Beagle!
Early last year, I started having trouble hearing. It felt like everyone was mumbling. When David accused me of having the TV volume turned up entirely too loud, I thought I should get my ears checked. So, I went to see the dandy team at the local 'Ear, Nose, and Throat' office. I had my hearing checked and they determined that I had experienced a 25% loss of hearing. They didn't see anything wrong with my ears, but after a little investigation they determined that my good friend Lasix was causing the hearing loss. I stopped the Lasix for a bit and my hearing returned to near normal. (I've spent entirely too much time in front of the speakers in a club while a band is playing to have perfect hearing.) Since I've had to be really good about taking Lasix lately, my hearing loss has returned. (The diuretic is one of those things I skip from time to time just because I don't feel like running to the bathroom every 15 minutes). It's really, really, freakin' aggravating to have trouble hearing everyone. I should probably call my doc to have him write a new Rx for a different water pill. We tried to go see the Chronicles of Narnia tonight, but all three showtimes were sold out. We went to Best Buy instead and bought a couple of DVDs. We also got a Johnny Cash CD. After seeing Walk The Line last weekend, we wanted to hear some more of "The Man in Black's" music. If you haven't seen Walk The Line, I recommend it! David and I both liked it a lot. I finished up class on Monday. No more homework until next semester!!!!!!! Yaayyyy!!!! I lost motivation about mid-term, so this is a welcomed break. Mom and I visited my brother today. He wants to be home for Christmas, but unfortunately, we don't think that is going to happen. I guess we'll have to wait and see though. In case I haven't mentioned it before, my brother is an addict. I wish I could say "recovering addict", but I can't. He is currently serving time for a crime committed to further his addiction. We get to see him twice a week for 30 minutes through bulletproof/shatterproof glass. I guess seeing him twice a week for a half hour is more than a lot of people get to see their sibling(s). It's hard for me though, because he lived with David and me for a while earlier this year. I'm accustomed to seeing him more often. I'll be painting all weekend. I'm working on a painting for my grandfather. It's his Christmas gift. I think I may actually be able to get it finished this weekend. He and my Granny don't have internet access, so there's no risk of the surprise being ruined. I lined up meeting space for the January meeting of the PH support group. Although, I'm struggling with a topic and speaker for the meeting. I'll need to start work on that Monday. I'm off to bed now. Stay warm this weekend! :-)
Comment:
marcine - December 10, 2005
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Jenni,
You continue to delight me with your insight and wit.
Now you are painting a picture for your grandfather...
In my opinion, it seems that for one so young, you already understand that ONLY by conscientiously rejecting negativity and adopting a positive attitude, will your life seem worth living to you...
Sadly, until I learned that I had IPAH, I spent a lot of my time living negatively. I could always find something that 'just wasn't right.'
As a result, I did a lot of bitching instead of living. :-)
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Tuesday, December 13 2005
Crowds, Crowds, Crowds
I don't like crowds. Crowded rooms, crowded malls, crowded bars .. all make me really, really uncomfortable. The kind of 'I want to scream at the top of my lungs' uncomfortable that can really annoy people that are with me. On crowded days, I can only Christmas shop in short, little shifts. Otherwise my nerves are shot. It's pretty obvious, too, I guess. David can usually tell, just by looking at me, when I've had enough. Last night, we went to the bookstore to shop for a couple of people. I also needed to pick up a few extra Christmas cards, so we ran by Target on our way home. With the exception of the hefty crowd on the Christmas card aisle at Target, the evening was pretty smooth - as far as crowds go. I'm not sure why I have this problem. Before PH, crowds never really bothered me that much. I mean, I've always been a little claustrophobic - but never like this. It's almost like I feel as if the people in the crowd are stealing all my air. I get a little short of breath and on-edge. Now that I've typed it and read it, it sounds crazy. Am I crazy? Nah.. surely not. Speaking of crowds, I'm going to spend a few days in Washington, D.C. before Christmas. David has to go up for a week of work and I am going to go for a few days. On my way back, I'm going to stop in North Carolina and see my Dad and my grandparents for Christmas. I really need to get the rest of my Christmas shopping done before I leave for DC. Unless of course, I want to face the crowded mall in DC. If I thought the mall here was crowded, I'm sure I'll probably just have a nervous breakdown if I attempt shopping in DC. Ha-Ha :-)
Comments:
Dolly Clinard - December 13, 2005
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I am the same way! I never cared for crowds either, but since the PH, it is much worse. I agree about the not enough air for us all. It is not crazy, I feel the same way. It makes me so nervous.
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Brigitte - December 13, 2005
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I've never cared for large crowds but I have noticed more of a dislike for them since my PH dx. I don't know why. I figured I was just being irritable. LOL
Shop in spurts or late at night..ooh or online... At least you're shopping. I still haven't done anything except what I last said. Oy
Enjoy your trip.... You aren't crazy
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I feel the same way as you! Before I got diagnosed with PH, I wasn't really bothered by crowds but I remember soon after being at a bar and I had to go outside a couple of times to get away from all the people. It just drove me nuts and I even said once or twice that I felt as though everyone around me was stealing my air. It's a horrible feeling... it must have something to do with our PH!!
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Sunday, December 18 2005
One Hundred Forty
That's how many unopened e-mails I had when I logged in late this afternoon. I've been offline since Wednesday night. We had an ice storm that knocked out power to almost everyone in our county and the neighboring counties. No power for nearly five days. Wow! The electric company was able to get our power back on late this afternoon. We're some of the lucky ones. They don't expect to have power completely restored for everyone until Tuesday. I didn't accomplish much during our little power outage. I did finish reading Wicked, by candlelight. I really enjoyed it! I started a book that my brother-in-law loaned me called Cutlass Empire, but I haven't made much progress. After finishing Wicked I scoured through some magazines that came by mail last week. I don't mind saying that I fell in love with a pair of boots that were in Glamour magazine. The price tag is $150, though. Ouch! The last time I spent that much on a pair of shoes ... well, I've never spent that much on a pair of shoes. I'd actually get a lot of wear out of these boots, though. (Still trying to convince myself that I should get them. *wink*) David was so great during the power outage! He built a fire and kept it going. He pulled out his camping stove and cooked every meal. He even made coffee every morning! I'm so fortunate. I don't recall ever having to endure an extended power outage and I never went "real" camping in Girl Scouts (I was only a scout one year before deciding I wanted to do something different.) David was an Eagle Scout so he knows all the secrets. This week is going to be such a busy week! David is headed to D.C. tomorrow morning. I'm staying behind to finish up Christmas shopping, visit my family in North Carolina, and do the annual Christmas baking with my Mom. I need to make one last trip to the post office to mail off my final batch of Christmas mail - the stuff that should have gone out three days ago. I also need to visit my sick friend, E, before I head to North Carolina. She had to have surgery right after Thanksgiving and I haven't made it over for a visit. I feel like such a lousy friend. I'm going to make her some fudge in the morning and call to see if she's up to a visit. Well, she may not even have her power back on. I'll try anyway.
Comments:
Sue. - December 18, 2005 |
oops....thought it froze up! So sorry about the repeat!!! LOL!!! Anyway...glad it came thru! LOL!! |
Sue - December 18, 2005 |
Oh, if I had to go camping...I would totally vote for camping in my own home! You so did it right!! Glad you were able to get the power back on tho...it's never fun to go without it for too long. Have a safe trip and above all, have fun! Merry Christmas!
God bless,
Sue |
Sue - December 18, 2005 |
Oh, if I had to go camping...I would totally vote for camping in my own home! You so did it right!! Glad you were able to get the power back on tho...it's never fun to go without it for too long. Have a safe trip and above all, have fun! Merry Christmas!
God bless,
Sue |
Sue - December 18, 2005 |
Oh, if I had to go camping...I would totally vote for camping in my own home! You so did it right!! Glad you were able to get the power back on tho...it's never fun to go without it for too long. Have a safe trip and above all, have fun! Merry Christmas!
God bless,
Sue |
Brigitte - December 18, 2005 |
Sounds like you had a nice relaxing time without the power on. :) Camping is fun even if you are forced to camp, and since you were doing it in your house you got lucky and still had all the creature comforts.
You sound like you're about to be superduper busy!!! Have a great holiday and travel safe.
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Sunday, January 1 2006
New Year Traditions
Wow - a new year! Starting a new year means so many things. To me, it feels like a clean slate start. Even though I'm not much of a resolution maker, I do have a few things in mind that I'd like to accomplish this year. I hope I can do it! Today we had the traditional New Year's Day meal. Actually I'm not sure if it's a tradition in other parts of the world, but it is a tradition here in the South. The meal includes Black Eyed Peas for good luck in the new year, some sort of greens (collards, spinach, etc..) for wealth in the new year, and pork for good health in the new year. It was sooooo good. Today was the first time that I've ever cooked greens and they turned out pretty well, if I do say so myself. You have to wash them three times, changing the water each time, before cooking them to get rid of all the grit. I learned a little cooking tip today while doing that. If you add vinegar to the water for the 1st wash, it gets rid of the grit in the 1st wash. You're still supposed to do the other two washes, just to be sure, but it's really not so bad - I love cooking. We took down the Christmas decorations today. For us it's a new record. Last year the tree didn't come down until mid-February. Of course, we spent the entire month of January in Florida last year, while David was working in St Pete. That's really no excuse though. Although, does it really matter if we leave the tree up until mid-February? :-) Happy New Year!
Comments:
Brigitte - January 11, 2006 |
As long as the tree isn't real leave it up!
My hubby left Christmas lights (really poorly done ones too because I did them by myself without a ladder *mwahahha* up until July one year... hehehehe
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Jenni - January 2, 2006 |
Sue,
LOL You made me think about our Christmas decorations from a few years ago so I had to respond! This year no one would have noticed if we left our decorations up until Valentines Day. Although, a few years ago David left the front porch Christmas lights up until Easter. He also continued to plug them in everyday. :-)
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Sue - January 2, 2006 |
So, who's really going to see if your decorations are up till mid-February? I'm glad you had a good New Year's day...I forgot most of the traditions...didn't even watch one single parade or bowl game...what kind of American am I???? LOL!! Enjoy the good times...it's great when that happens!
God bless,
Sue |
Tuesday, January 3 2006
Monday? Nope, It's Tuesday!
Today feels like Monday. Yesterday seemed like just another weekend day. Most everyone around here was off of work yesterday in observance of the New Year. David and I just goofed around the house most of the day. So sitting at my desk today, doing "work", seems Monday-ish. I made the phone calls to schedule all of my monthly maintenance doctor's appointments this morning. I feel like a used car after doing all of that. 'Yea, I need to bring the clunker in for the monthly check-up: oil change, transmission flush, and change the air filter while you're at it". Okay, sorry .. I'm really not in a bad mood. :-) The next support group meeting is on Saturday. I finally got all of my little duckies in a row and I'm looking forward to a good meeting. My doctor is going to speak on new treatments for PH. I'm definitely looking forward to that talk. Don't get me wrong, I'm happy with what I have now and I don't really want to rock the boat. I'll just be happy when it's possible to get the same effect from a drug that I don't have to explain to nosy bystanders. The kind of nosy bystanders that call your pump a "newfangled cell phone". Oh! David got super news this weekend. I think I mentioned in a previous entry that David is in a rock band. The band released a compilation CD with two other acts last year. It was listed #5 on the Top 10 of Local Releases in 2005 in the newspaper on Friday. That's awesome! Especially considering the size of the "local music scene" around here, and considering how hard they worked on the CD. I'm so proud of them!
Comments:
Brigitte - January 11, 2006 |
Tell me you are kidding about some jackass calling your pump a cellphone lol
Congrats to david!
PS
I feel like one of the used cars at rent a wreck lol |
Wednesday, January 4 2006
My Lab Lady
This afternoon I had my monthly Tracleer blood work done. I also gave blood for a few other minor tests that one doctor or another, at some point, said I should have. I saw Nurse Diane for my blood work. I've been seeing Diane for my labs every month (except one, I think) for a little over two years now. She is probably one of the kindest, most compassionate people I've ever met. She also knows exactly what vein to stick, how to stick that vein, and she never has to dig around because she overshot that vein. I hope that she knows how much I appreciate her kindness and compassion. It isn't often, these days, that you find someone in the doctor's office who doesn't make you dread the lab event entirely. In other news, we're headed over to my bro-in-law's house for a birthday shindig. David's nephew turns 8 today. Even though I love David's family tremendously, tonight will be awkward. Let me explain ... Years ago, David and his brother married sisters. So, David's ex-wife is the sister of his brother's wife. David's ex-wife doesn't like me and no one is really sure why, nor do any of us care. That may sound cold, but I've never done anything to her to warrant her dislike of me. Anyway, I should probably go ahead and start drinking so I have time to pop a mint before the party. LOL :-)
Wednesday, January 11 2006
Busy Weekends
This past weekend was busy! Actually, the past several days have been go, go, go. On Friday, we celebrated my stepson's birthday. He turned 11 last week. It was pretty easy getting ready for the party - we ordered the food and I made the cake. He racked up in the gift department, as usual. :-) On Saturday, there was a support group meeting in Columbia. It was a great meeting. My specialist talked about "New Treatments for PAH". I took notes! He is such a great speaker and always has good information to share. We also saw a demonstration for the new "i-neb" machine for Ventavis. That's a nifty new device for folks on Ventavis. Only one member of our group is on Ventavis, but she just started so it's probably hard for her to say how well it's working just yet. Also, one of our members showed off his new portable O2 concentrator. It's one of the brand new setups that you can fly with. It's very small and really quiet. He is supposed to report back after his trip in April on how well it worked. There were three new members at the meeting, which is fantastic. I'm always happy when someone new joins us. It lets me know that the message is getting around about our group. On Sunday, I returned to Columbia for a political meeting. I think this meeting was one of the best that I've been to in a while. Everyone was in a great mood, there was minimal whining that someone wasn't doing something they should be, and we discussed some important topics. Our state convention is coming up soon. I'm looking forward to it - it will be my first political convention. On Monday, we drove to Alabama to pick up a metal storage building that David ordered - well the pieces of one. It still has to be assembled. We didn't have a storage place for the lawnmower and tools, so when David found this place and received a quote he ordered a building for us. It was less expensive to drive there to pick it up than it was to have it shipped here. It was a pretty smooth trip, with the exception of dealing with the staff. We were told to go next door and get those pieces first. While we were doing that, they would get our order ready for loading. They didn't get our order ready. They tore out of there like the building was on fire and headed to lunch. Needless to say, we were pretty irritated with their lack of customer service skills. Since we weren't really supposed to go next door first we had to come right back and wait on them to return from lunch before we could get our order. We had driven 5 1/2 hours and they couldn't wait FIFTEEN MINUTES to help us out. Well, we don't plan on recommending them to anyone. Yesterday I was supposed to attend a rally at the Capital, opposing property taxes. I didn't make it. After being in the car for a little over 11 hours on Monday, I wasn't up to a rally so I sat this one out. I stayed around town and got some errands out of the way. I also did a little shopping with my Mom. We found a new gift and specialty food store called "World Market". For our area, it's pretty darn nifty. I found the sparkling lemonade that I love, but until now could only find in one other store. I also found single serving sizes of Nutella. David's going to flip when he hears that - he loves Nutella. They have a great selection of herbs and spices not always found at the local grocery store, a huge wine selection, and some goodies from local wineries and breweries. They also have a selection of housewares and baskets. Tomorrow I'm headed to the local Election Commission to introduce myself as the County Chair of the local party and drop off our contact information. I also have another political meeting tomorrow evening and one on Friday evening. At least Saturday night is going to be free of politics. We're having a "Movie Party". Friends are coming over to drink, eat, and watch a movie. I'm looking forward to it! I'm also looking forward to next week. It's shaping up to be much quieter!
Comments:
Cheryl - January 11, 2006 |
Sounds like your World Market is part of our Cost Plus (World Market). In the 1970's it is where we all shopped for cheap treasures to decorate our apartments. But now it's become an interesting food store and an excellent wine shop in addition to all the usual chatchkas. They nearly have the best wine selection - local and otherwise - of anyone around. It is a great, fun shop.
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