When you have CF you spend your life waiting for the ball to drop on your health. You live life as best as you can: you go to college, you get a job in your field, you stop when you need to and in between you fit in hospital stays, IVs and therapies daily.
But what happens when you hit your 30s, you can't work because your health is too precarious, and you have been evaluated for a double lung transplant, and then you learn that you MIGHT get a new drug that could push that expiration date to over 60?!
It sounds so exciting and amazing and just plan AWESOME.
But it also sounds scary and emotional and weird.
WHY???
Well that's because you spent your whole life up until this point thinking that you would never ever see 40. That making it to almost 33 is a miracle in itself. And that the thought of living to 60+ is just impossible. I know to someone who hasn't had to deal with this it probably sounds ridiculous. But let me explain.
I don't remember when I became fully aware of CF and its consequences. I always knew my life was going to be shorter but I don't think I ever truly THOUGHT about it. Not until 15 or so years ago anyway. Then I began to think about my life expectancy. I went to college right after high school and I got a job in my field right after college in the fall of 2001. I worked in my field for 8 years, almost to the month (November 2001 to December 2009). I participated in the 401k offered by all my employers but I don't have one anymore. I took the penalties when I moved up to Boston and took that money to survive on until I was approved for SSDI. When we would have meetings in work with the 401k company I would tell them I was not going to live to retirement age so what were my options? Just get it anyway.
I have never thought about burying my parents or living without them. I have always assumed I would be buried first. I have never thought about old age and spending 30 years with my husband. I always assumed I would be dead by 40. I never expected to see my niece and nephew graduate high school, college, or get married. I haven't worried much about things because I was expecting to be dead by 40.
Now I am faced with the possibility of ALL of those things. I might have to bury my parents. I might spend the next 30 years with Peter. I might see my niece and nephew grow up and get married. I might make it to retirement age and I might not be prepared.
When you expect to die early you live your life completely different than someone who expects to retire some day. And not just in "living" life, but in preparing for old age. Why prepare if there is no need for it? I wanted to keep my 401k in a 401k when I "retired" in 2009 so that my family wouldn't have to be burdened with my funeral costs. I was told by them not to worry about it, to take the money to survive on then. You think differently.
How does one cope with this new prospect of life? Especially for someone who likes to be prepared, how do you cope with the possibility of NOT being prepared to retire? Kalydeco, when it comes out for DDF508 mutations, will change my life forever. I will live to retirement age. I will grow old with Peter. I will be able to go back to work. But its going to be like starting out at 35. Those 14 years where I was working, and then not working, will be like they didn't exist. I will have to start from scratch. And let me tell you how scary that thought is.
I don't want anyone reading this to think I am being ungrateful. Believe me, I am thoroughly ecstatic that I will get to do all that I wanted to do again without needing new lungs. I won't have to worry about the threat of cancer being exacerbated tenfold because of immuno-suppressant medications. I might get the chance to be as close to normal as possible. And that is amazing and exciting to me.
But I still have to deal with things I never thought I would have to. I guess it makes me human and normal to now think about things that my husband and brother and friends think about. To worry about retiring and having money to do it. To worry if I will spend the rest of my life working somewhere I hate to get a good retirement, or if I will do something I love for 30 years. The possibilities are endless, and though they are scary and exciting, they are inevitable.
I hear there are survivors groups for people with CF living over the age of 40. Maybe we need more of these, for those who will be changing their life's outlook completely in just a few short years...or less...
Showing posts with label interior design. Show all posts
Showing posts with label interior design. Show all posts
Sunday, September 15, 2013
Tuesday, June 11, 2013
Reflecting on the past 15 years of my life
Fifteen years ago yesterday I graduated from high school. So much has changed in those years...
Random highlights:
January 1998 President Clinton's "I did not have sexual relations with that woman, Ms Lewinsky."
April 1998, Animal Kingdom at WDW opened for the first time
May 1998 Frank Sinatra dies
September 1998 Google is founded
November 1998 Elmo's World launches
(source secondary source)
CF Related Highlights since 1998:
1998 Specialized clinical research centers are designated as the Foundation’s Therapeutics Development Network.
2000 Foundation-supported scientists map the entire genetic structure of the most common cause of CF lung infections — the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways to turn off the bad ones.
2003 CFFT-supported scientists at Structural GenomiX, Inc., determine the three-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.
2004 CFFT-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.
2006 VX-770, an oral drug in development by Vertex Pharmaceuticals, Inc., with support from the Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root cause of CF, and works at the cellular level to open chloride channels that do not function correctly in people with the disease.
2007 Vertex selects a second potential drug known as VX-809 for development. Like VX-770, VX-809 addresses the root cause of CF, but it works by helping the defective CF protein move to its proper place in the cell.
2008 The Foundation and Vertex achieve a “proof of concept,” showing that it is possible to treat the root cause of CF. During Phase 2 studies of VX-770, trial participants, all of whom carry the G551D mutation of CF, show unprecedented improvements in key signs of the disease.
2010 The FDA approves a new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.
2011 The Foundation announces that Phase 3 clinical trials of VX-770 showed profound results. Those receiving the drug demonstrated the highest increase on a lung function test seen in any clinical trial of a CF drug. Vertex submits a New Drug Application to the FDA for VX-770 under the trade name Kalydeco™.
2011 Results from the first part of an ongoing Phase 2 trial testing Kalydeco in combination with VX-809 show promising results in people with the most common CF mutation, Delta F508.
2012 The FDA approves Kalydeco™ for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
2012 Results from a Phase 2 trial of Kalydeco in combination with VX-809 show a significant improvement in lung function in people with two copies of the most common CF mutation, Delta F508.
(source)
For me:
I am not where I had expected I would be 15 years post-graduation. I thought I would be an interior designer working at some high level company in Philadelphia, married with kids, living in a beautiful home in the suburbs.
I am not where I expected I would be, but I am where I WANT to be. My health may be shit, my ability to work may be gone for now, but I am married to the most amazing man I could ever dream of and I am the step-mother to two kids. They may not be my own flesh and blood, but they I do everything in my power to make sure they will be contributing members of society, and good ones.
I may not have the biggest house, or hell, even live in Pennsylvania anymore, but I have a great life and I would not trade it for the world!!!
I never thought that 15 years later I would be living in Boston. I never thought I would have married and honeymooned in WDW. I never thought I would have my baby making parts removed to reduce the risk of cancer. I never thought I would ever be referred to a double lung transplant clinic. I never thought I would ever meet the man of my dreams online, THANKS to CF! I never thought I would make so many wonderful friends because of this retched disease. And I never thought I would ever stop working. Then again, I did always think I would be dead at 26 or by 40...so...
Random highlights:
January 1998 President Clinton's "I did not have sexual relations with that woman, Ms Lewinsky."
April 1998, Animal Kingdom at WDW opened for the first time
May 1998 Frank Sinatra dies
September 1998 Google is founded
November 1998 Elmo's World launches
(source secondary source)
CF Related Highlights since 1998:
1998 Specialized clinical research centers are designated as the Foundation’s Therapeutics Development Network.
2000 Foundation-supported scientists map the entire genetic structure of the most common cause of CF lung infections — the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways to turn off the bad ones.
2003 CFFT-supported scientists at Structural GenomiX, Inc., determine the three-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.
2004 CFFT-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.
2006 VX-770, an oral drug in development by Vertex Pharmaceuticals, Inc., with support from the Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root cause of CF, and works at the cellular level to open chloride channels that do not function correctly in people with the disease.
2007 Vertex selects a second potential drug known as VX-809 for development. Like VX-770, VX-809 addresses the root cause of CF, but it works by helping the defective CF protein move to its proper place in the cell.
2008 The Foundation and Vertex achieve a “proof of concept,” showing that it is possible to treat the root cause of CF. During Phase 2 studies of VX-770, trial participants, all of whom carry the G551D mutation of CF, show unprecedented improvements in key signs of the disease.
2010 The FDA approves a new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.
2011 The Foundation announces that Phase 3 clinical trials of VX-770 showed profound results. Those receiving the drug demonstrated the highest increase on a lung function test seen in any clinical trial of a CF drug. Vertex submits a New Drug Application to the FDA for VX-770 under the trade name Kalydeco™.
2011 Results from the first part of an ongoing Phase 2 trial testing Kalydeco in combination with VX-809 show promising results in people with the most common CF mutation, Delta F508.
2012 The FDA approves Kalydeco™ for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
2012 Results from a Phase 2 trial of Kalydeco in combination with VX-809 show a significant improvement in lung function in people with two copies of the most common CF mutation, Delta F508.
(source)
For me:
I am not where I had expected I would be 15 years post-graduation. I thought I would be an interior designer working at some high level company in Philadelphia, married with kids, living in a beautiful home in the suburbs.
I am not where I expected I would be, but I am where I WANT to be. My health may be shit, my ability to work may be gone for now, but I am married to the most amazing man I could ever dream of and I am the step-mother to two kids. They may not be my own flesh and blood, but they I do everything in my power to make sure they will be contributing members of society, and good ones.
I may not have the biggest house, or hell, even live in Pennsylvania anymore, but I have a great life and I would not trade it for the world!!!
I never thought that 15 years later I would be living in Boston. I never thought I would have married and honeymooned in WDW. I never thought I would have my baby making parts removed to reduce the risk of cancer. I never thought I would ever be referred to a double lung transplant clinic. I never thought I would ever meet the man of my dreams online, THANKS to CF! I never thought I would make so many wonderful friends because of this retched disease. And I never thought I would ever stop working. Then again, I did always think I would be dead at 26 or by 40...so...
Wednesday, December 5, 2012
I need to have Patience and Faith...
I have some friends on Facebook that are old coworkers. These are people I spent 40-50+ hours a week with prior to my health taking a dive and having to quit. I enjoy reading up on their lives and seeing what they are up to now.
But at the same time I hate seeing how they are progressing in their careers and life and I am sitting here, idle, waiting for my chance to excel again. And knowing that there is a chance that I may never work or accomplish my dreams ever again.
I miss the working life so much. Some days I want to delete these people from my friends list so I don't have to see the advancements they are making, or the babies they are having.
But why should I do that? And its not them, it really is ME. I need to just get over my life and remember that each person is different and each person lives life differently. This life is what is destined for me and no matter what, I can not change it. I can't change the fact that I will NEVER have a baby of my own. Or that I can't work full time right now because of my health. I could work, I could spend every free second I have making sure my health stays stable, and I could miss out on my family. Or I could continue on this path and have patience that one day I WILL go back to work, and that I WILL be amazing, and I WILL do all that I have always wanted to do.
I need to have patience and faith.....
But at the same time I hate seeing how they are progressing in their careers and life and I am sitting here, idle, waiting for my chance to excel again. And knowing that there is a chance that I may never work or accomplish my dreams ever again.
I miss the working life so much. Some days I want to delete these people from my friends list so I don't have to see the advancements they are making, or the babies they are having.
But why should I do that? And its not them, it really is ME. I need to just get over my life and remember that each person is different and each person lives life differently. This life is what is destined for me and no matter what, I can not change it. I can't change the fact that I will NEVER have a baby of my own. Or that I can't work full time right now because of my health. I could work, I could spend every free second I have making sure my health stays stable, and I could miss out on my family. Or I could continue on this path and have patience that one day I WILL go back to work, and that I WILL be amazing, and I WILL do all that I have always wanted to do.
I need to have patience and faith.....
Thursday, June 14, 2012
Big Decision to Make
Today I decided to check out the design job scene online. And I found a job I think I would love. And they are hiring. And I could finish my NCIDQ paperwork and actually get licensed! (now to actually FIND the paperwork I started when I still lived in PA)
But what should I do?
You all have seen me complain and whine about how much I miss working on here numerous times. I would LOVE to go back to work! I know I couldn't do it for years but maybe 12-24 months? Just enough to get some money saved up to keep us from drowning when I get transplanted.
I spoke with a friend who went from SSDI to working while on Medicare and I wouldn't lose my Medicare, just my SSDI which I could obviously live without if I was working again. And I would be able to get back on it fairly easy since I wouldn't be taking more than 36 months off from payments.
But what do I do about life? And school? And volunteering? And Major (our dog)? And my health?
I remember that when I worked I had no life. I couldn't see friends on weekends because I was so tired from working all week. But I don't have many friends up here anyway and we stay home a lot on the weekends as it is.
School I could put on hold if I wanted to. Or just take one class at a time. I think I could handle it. I have 6 years to complete the masters program and I know I won't be working for 5 years so I could complete it after stopping work again. Am I OK with that? I think so.
Volunteering would obviously have to come to an end. I could deal with that. I could always start up again when I stopped working again.
Major we could put in doggy day camp. It wouldn't be too bad and he loves it there anyway.
Health....hmmmmm....that is a tough one. I would still need to get IVs every few months just like now, but it would be more difficult to do when I am working 40+ hours a week. I was getting sick all the time when I worked and was down to 4 days a week. I doubt a new company is going to hire me for only 4 days a week. Even if I did put the full 40 hours in.
There is just so much to think about. Should I send in my resume and just see if I even get a call back? But if I do get a phone call, do I tell them I am unsure of what I want to do? So so so so so much to think about!
Tuesday, January 12, 2010
Bodies and homes are surprisingly similar
Given my design / architecture background I thought this post would be funny and informative.
A few nights ago I was laying in bed thinking about a Cyster whose initials are MEP. It made me giggle. MEP in the design world stands for Mechanical, Electrical and Plumbing. It made me giggle because it relates to a Cyster's body as well. Also Fibros, I won't leave them out of this no worries.
Our bodies are much like those of a home. We have mechanical systems (arteries, heart, lungs etc), electrical systems (brain, spinal cord, nerves etc), and plumbing systems (stomach, colon, bladder etc). Each part of the system need to be working properly in order for our bodies to run smoothly. If they don't we end up seeing a doctor / specialist who will diagnose and fix the problem (hopefully). Much like a home owner must do when something breaks in one of their systems.
Now doctors and those with chronic illnesses have a slight advantage over the average person. We are able, for the most part, to diagnose the issue and seek out the proper treatment. This is also the case with those that work on the aforementioned home systems. Plumbers and electricians can find the issue and resolve it on their own, or if they can't do it alone, they know someone who can fix it.
Another similarity - we (chronically ill and doctors) are also sought out for answers regarding problems friends and family may be having with their bodies. Or to recommend a doctor to someone. Much the same as a plumber or electrician is asked for advice from family and friends about who to use for the work that needs to be done on their homes. Or in some cases they are asked to do the work themselves. I have been known to perfom CPT on a friend with a chest cold from time to time.
All of the systems, be it in the home or the body, need upkeep. We need food, water and medicines to keep us running at top speed. A home needs to be maintained in order for it to provide us with a clean living environment.
I know it isn't an all encompasing blog and there is way more that can be added, but I thought it might give everyone a fun little thought for the day. Is there anything about your job or career that you can compare to the way a human body works?
(disclaimer - I don't have spell check so please excuse any spelling mistakes, it is not my strong point in life lol)
A few nights ago I was laying in bed thinking about a Cyster whose initials are MEP. It made me giggle. MEP in the design world stands for Mechanical, Electrical and Plumbing. It made me giggle because it relates to a Cyster's body as well. Also Fibros, I won't leave them out of this no worries.
Our bodies are much like those of a home. We have mechanical systems (arteries, heart, lungs etc), electrical systems (brain, spinal cord, nerves etc), and plumbing systems (stomach, colon, bladder etc). Each part of the system need to be working properly in order for our bodies to run smoothly. If they don't we end up seeing a doctor / specialist who will diagnose and fix the problem (hopefully). Much like a home owner must do when something breaks in one of their systems.
Now doctors and those with chronic illnesses have a slight advantage over the average person. We are able, for the most part, to diagnose the issue and seek out the proper treatment. This is also the case with those that work on the aforementioned home systems. Plumbers and electricians can find the issue and resolve it on their own, or if they can't do it alone, they know someone who can fix it.
Another similarity - we (chronically ill and doctors) are also sought out for answers regarding problems friends and family may be having with their bodies. Or to recommend a doctor to someone. Much the same as a plumber or electrician is asked for advice from family and friends about who to use for the work that needs to be done on their homes. Or in some cases they are asked to do the work themselves. I have been known to perfom CPT on a friend with a chest cold from time to time.
All of the systems, be it in the home or the body, need upkeep. We need food, water and medicines to keep us running at top speed. A home needs to be maintained in order for it to provide us with a clean living environment.
I know it isn't an all encompasing blog and there is way more that can be added, but I thought it might give everyone a fun little thought for the day. Is there anything about your job or career that you can compare to the way a human body works?
(disclaimer - I don't have spell check so please excuse any spelling mistakes, it is not my strong point in life lol)
Thursday, January 22, 2009
ASID
I did it!!!!!!! I am a member of the ASID now!!! Sweet!!!!!!!!!!!!! They have study programs for the NCIDQ which I will be taking on October!!! It was a fabulous surprise to see the email when I got to work! One mroe thing off my to do list!
YEAH BABY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
YEAH BABY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Friday, October 3, 2008
New Schedule
Well I have to make a decision soon. If I am going to go to a reduced work week I need to start it by Nov 1st. That is totally MY deadline, no one else's. I think I need to do a pro/con list.
But SO much is going on at work that I kind of DON'T want to work 4 days a week. Our Interior Design department is finally getting under way. We have quite a few jobs that we are taking on and for the first time I am in charge of some things. I am talking to reps, owners, going to meeting etc. I am really loving this! Besides, how AWESOME will it look on my resume to have that I was on the team that STARTED the department??? Helloooooooo!!!!! Just to clarify...I am not looking to switch jobs, but one day, after tx I will need to job hunt again.
I know I know, my health is the MOST important thing, I get that, I realize that, I understand that. But it doesn't make it easier to say "yeah sure I'll work less when I know we are super swamped with work in our dept even though not so much in the others". And no, because I know some of you are wondering, it isn't THAT easy to just take some people from architecture and have them picking out materials and making up presentation boards. If it was they wouldn't need us :P
So anyway. I am looking forward to a reduced week mainly because I will spend less money on gas. Not a significant drop but a small one. It will be the same day as my clinic appointments so that will work out well. I plan on babysitting Owen on Wednesdays too, so that is a full day of me and him time. And I can take him to Carrie's where my SIL watches the other 4 kiddies and we can all have a grand old time.
But I feel fine. I really do. Not super fantastic but fine. I think the O2 is helping and if I wasn't staying up so darn late, because of someone, I would be getting my sleep and feeling rested ;D I think this house had a lot to do with last winter and being so sick. How many times did I run out of oil? That plays a huge roll in my health. Trying to stay warm in a house with leaky windows and it's 20 degrees out. HA! And in 3 weeks I move so then I will be in a house with working, insulated and non-drafty windows.
So basically I guess what I am saying is that I don't FEEL like I need too work less. And I know full well that I can and most likely will do some work on those Wednesdays, be it research on the internet or looking over drawings.
OY!! To make a decsion is SO freaking hard for me!!!!!!
But SO much is going on at work that I kind of DON'T want to work 4 days a week. Our Interior Design department is finally getting under way. We have quite a few jobs that we are taking on and for the first time I am in charge of some things. I am talking to reps, owners, going to meeting etc. I am really loving this! Besides, how AWESOME will it look on my resume to have that I was on the team that STARTED the department??? Helloooooooo!!!!! Just to clarify...I am not looking to switch jobs, but one day, after tx I will need to job hunt again.
I know I know, my health is the MOST important thing, I get that, I realize that, I understand that. But it doesn't make it easier to say "yeah sure I'll work less when I know we are super swamped with work in our dept even though not so much in the others". And no, because I know some of you are wondering, it isn't THAT easy to just take some people from architecture and have them picking out materials and making up presentation boards. If it was they wouldn't need us :P
So anyway. I am looking forward to a reduced week mainly because I will spend less money on gas. Not a significant drop but a small one. It will be the same day as my clinic appointments so that will work out well. I plan on babysitting Owen on Wednesdays too, so that is a full day of me and him time. And I can take him to Carrie's where my SIL watches the other 4 kiddies and we can all have a grand old time.
But I feel fine. I really do. Not super fantastic but fine. I think the O2 is helping and if I wasn't staying up so darn late, because of someone, I would be getting my sleep and feeling rested ;D I think this house had a lot to do with last winter and being so sick. How many times did I run out of oil? That plays a huge roll in my health. Trying to stay warm in a house with leaky windows and it's 20 degrees out. HA! And in 3 weeks I move so then I will be in a house with working, insulated and non-drafty windows.
So basically I guess what I am saying is that I don't FEEL like I need too work less. And I know full well that I can and most likely will do some work on those Wednesdays, be it research on the internet or looking over drawings.
OY!! To make a decsion is SO freaking hard for me!!!!!!
Tuesday, August 19, 2008
I absolutely LOVE my job!
I am so freaking excited I don’t know where to start!! That’s a lie I do haha!!!
I emailed my HR person today at work to set up a meeting so she and I can go over all the details about going part time. She sent back that she would set it up and asked when I was thinking of starting. So I told her December 1st or January 1st. She emailed me back saying that she wasn’t sure what I had in mind but if I were to work 4-9 hours days (36 hours) and take a day off during the week I would still be considered full time! Can you believe it?!?! SO I can work full time, still get my health insurance and a full day off to rest – which I will be taking Wednesdays since it is the middle of the week. She is still going to set up the meeting since I have a few questions about that and the future. But I will be able to tell my DR and I know he is gonna be so super excited too!!! Then a little later my boss (who I had my review with), came up to me and told me that the HR person had told him what she and I talked about and that he was going to send her stuff to send to me and that they will do whatever it takes to work this out with me. They are willing to work completely!! I know he said it during the review but now I can see it being implemented. It is such a great feeling!!!
I almost cried when I read this. I know it seems so petty and small but to be able to keep my health insurance and not have to COBRA it is a huge deal! Also, it means that I can definitely move in with my friend.
I went to his house on Sunday to talk about it and I am in. It works out well because his soon to be ex-wife took almost all the furniture so all he has is a TV and recliner in the living room and a sofa and TV in the basement. So I can put my furniture in the living room. The bedrooms are tiny but there are 4 and 2 bathrooms. And he doesn’t mind Maggie. We grew up together and he has been around her forever so he is fine with her. I will just gate her in my bedroom when I go to work just in case she has an accident. It is also good because I won’t need to stay there a full year like I would with an apartment, just in case something happens health-wise with me.
I also had a lunch meeting with our other designer today and the intern to go over what we want to offer as far as interior services. We have a great list going and I can’t wait until the department is completely set up so we can start working on more projects. I love it!!! An interior design department in my office and I am on the team that is starting it up. It can’t get any better!!!! Did I mention that I love my job right now hahahaha!!!!
It seems that everything is falling into place finally. I hope it stays this way for a long long time!!!
I emailed my HR person today at work to set up a meeting so she and I can go over all the details about going part time. She sent back that she would set it up and asked when I was thinking of starting. So I told her December 1st or January 1st. She emailed me back saying that she wasn’t sure what I had in mind but if I were to work 4-9 hours days (36 hours) and take a day off during the week I would still be considered full time! Can you believe it?!?! SO I can work full time, still get my health insurance and a full day off to rest – which I will be taking Wednesdays since it is the middle of the week. She is still going to set up the meeting since I have a few questions about that and the future. But I will be able to tell my DR and I know he is gonna be so super excited too!!! Then a little later my boss (who I had my review with), came up to me and told me that the HR person had told him what she and I talked about and that he was going to send her stuff to send to me and that they will do whatever it takes to work this out with me. They are willing to work completely!! I know he said it during the review but now I can see it being implemented. It is such a great feeling!!!
I almost cried when I read this. I know it seems so petty and small but to be able to keep my health insurance and not have to COBRA it is a huge deal! Also, it means that I can definitely move in with my friend.
I went to his house on Sunday to talk about it and I am in. It works out well because his soon to be ex-wife took almost all the furniture so all he has is a TV and recliner in the living room and a sofa and TV in the basement. So I can put my furniture in the living room. The bedrooms are tiny but there are 4 and 2 bathrooms. And he doesn’t mind Maggie. We grew up together and he has been around her forever so he is fine with her. I will just gate her in my bedroom when I go to work just in case she has an accident. It is also good because I won’t need to stay there a full year like I would with an apartment, just in case something happens health-wise with me.
I also had a lunch meeting with our other designer today and the intern to go over what we want to offer as far as interior services. We have a great list going and I can’t wait until the department is completely set up so we can start working on more projects. I love it!!! An interior design department in my office and I am on the team that is starting it up. It can’t get any better!!!! Did I mention that I love my job right now hahahaha!!!!
It seems that everything is falling into place finally. I hope it stays this way for a long long time!!!
Thursday, August 14, 2008
Review today
Today went really well. I was supposed to have my review yesterday but my boss forgot about a meeting he had out of town so we postponed it for today at lunch. Worked out well because I was quite grumpy yesterday. So today we went to lunch at a pizza place. They had delicious food!!!! So yummy and B paid, yay!
The low down: They are super excited to have me back. I was complimented on my intuition and efficiency at getting things accomplished. They also like that I can bounce from one project to another and not skip a beat. It makes me very versatile and able to help out wherever it is needed. I mentioned how I would like to get involved more with our other interior designer so that she and I can do the ID work when it comes up. They both agreed that it is a great idea and told me to talk to her. She is working on coming up with a scope of work that the firm can offer as far as interior design services. We are going to be offering basic services and we want to highlight just what we can do in the office. So she and I are meeting next Tuesday to go over a bunch of stuff. And I may be getting moved back to her area so that we are working in the same cubby instead of on different sides of the office. It will be nice because everyone I work with is on the other side haha!!!
I did get a raise which would definitely help me move out on my own. However…I had a few ideas and it was discussed at my review as well. I mentioned that my DR would prefer me working part time. I also said that I wasn’t too keen on the idea but I was considering it. Both S and B said that they would rather have me working 3 days a week consistently than having me work 5 days a week and being out for a few weeks every so many months. It was also discussed about the possibility of getting a newer, licensed version of CAD on my home computer so I can work from home if the need arises. This is just a thought, not necessarily going to happen. But B did mention it so it is nice to see him willing to work with me. It was actually the highlight of the review. I definitely feel welcomed and needed which is great. I have no worries about them willing to work with me in the future. It is one weight that is lifted.
Now on to more that relates to all this. Last night I noticed that my sputum is once again getting darker. This means my PA is flaring up more, oh joy. I have only been back to work three weeks and it isn’t even cold/flu season yet. So last night, as I was lying in bed contemplating what to do with my future, I realized a few things. There is absolutely NO reason why I shouldn’t move in with my mom. Ok so I am worried about all their friends, and losing my independence, but if I continue to run myself into the ground it will be taken from me without my consent. At least now I still have some say in my health; I can “control” it so to speak. I am in the process of making a pro/con list so I can see exactly why I should suck it up and live at home again. Don’t get me wrong, I am a nervous wreck about moving back home and giving up some of my freedoms, but I also know that there will be plenty of positives that come along with it all. If Roshelle taught me anything it is that we can set our paths and control some things. Even if it is very small it may be worthwhile. Having the choice to work part time or full time, and taking part time is much more desirable than being forced to work part time.
So I guess that is it for now. Overall it was a pretty good day. My pinched nerve in my neck is still here causing me headaches and nauseous-ness. But eventually that will go away...
The low down: They are super excited to have me back. I was complimented on my intuition and efficiency at getting things accomplished. They also like that I can bounce from one project to another and not skip a beat. It makes me very versatile and able to help out wherever it is needed. I mentioned how I would like to get involved more with our other interior designer so that she and I can do the ID work when it comes up. They both agreed that it is a great idea and told me to talk to her. She is working on coming up with a scope of work that the firm can offer as far as interior design services. We are going to be offering basic services and we want to highlight just what we can do in the office. So she and I are meeting next Tuesday to go over a bunch of stuff. And I may be getting moved back to her area so that we are working in the same cubby instead of on different sides of the office. It will be nice because everyone I work with is on the other side haha!!!
I did get a raise which would definitely help me move out on my own. However…I had a few ideas and it was discussed at my review as well. I mentioned that my DR would prefer me working part time. I also said that I wasn’t too keen on the idea but I was considering it. Both S and B said that they would rather have me working 3 days a week consistently than having me work 5 days a week and being out for a few weeks every so many months. It was also discussed about the possibility of getting a newer, licensed version of CAD on my home computer so I can work from home if the need arises. This is just a thought, not necessarily going to happen. But B did mention it so it is nice to see him willing to work with me. It was actually the highlight of the review. I definitely feel welcomed and needed which is great. I have no worries about them willing to work with me in the future. It is one weight that is lifted.
Now on to more that relates to all this. Last night I noticed that my sputum is once again getting darker. This means my PA is flaring up more, oh joy. I have only been back to work three weeks and it isn’t even cold/flu season yet. So last night, as I was lying in bed contemplating what to do with my future, I realized a few things. There is absolutely NO reason why I shouldn’t move in with my mom. Ok so I am worried about all their friends, and losing my independence, but if I continue to run myself into the ground it will be taken from me without my consent. At least now I still have some say in my health; I can “control” it so to speak. I am in the process of making a pro/con list so I can see exactly why I should suck it up and live at home again. Don’t get me wrong, I am a nervous wreck about moving back home and giving up some of my freedoms, but I also know that there will be plenty of positives that come along with it all. If Roshelle taught me anything it is that we can set our paths and control some things. Even if it is very small it may be worthwhile. Having the choice to work part time or full time, and taking part time is much more desirable than being forced to work part time.
So I guess that is it for now. Overall it was a pretty good day. My pinched nerve in my neck is still here causing me headaches and nauseous-ness. But eventually that will go away...
Tuesday, August 12, 2008
Today's happenings
Today was our Habitat charette. There were a fair amount of people that showed up which was nice! Some good plans and some ok plans. I liked my plan a lot until I realized I forgot a mechanical room and laundry area haha! Figures! But I can squeeze some things around and get it in. We decided to break into two teams since there were two distinct plan ideas. One set was side entry plans, the other was front entry. I am on the front entry team. We are going to get together again September 19th and do the same thing. Our teams each need to have a plan, four elevations and a site plan with the building on it. Not too bas especially since there are 5 people on a team. I am excited!!!
In other news…tomorrow is my review yay!!!! I can’t wait! I will definitely be updating tomorrow with what happens!
In more other news…S from work bought me a book! We were talking about it last week I think and I said I would try it. Well he brought it in yesterday for me and said he got it for me. How sweet!!! It is called the “Devil in the white city”. Its history and architecture related. I can’t wait to start reading it. He is so nice!!!!! I love working with him. I am so glad they are letting me again. There was a joke going around that I wasn’t allowed because every time I worked with him I ended up in the hospital! It was just coincidence I think haha! But he does a lot of the schematic design work which is what I love doing. All the fun drafting and rendering. Yeah sign me up!!!!
I don’t know if it is just me or if they are trying to hype me all up I just don’t know, but I feel like everyone at work is praising me more than usual. Well I know they are I just don’t know why. Now don’t get me wrong I am basking in the “Awesome job” and “excellent work” phrases that are being told to me. I just wonder why now? I have been doing the same work before. I don’t know, maybe I am just over thinking haha!
What else, let’s see….Oh I got my period on Monday and I have been super happy ever since!! Haha! Maybe it is PMDD????? And I called Planned Parenthood today to schedule my Mirena insertion and yeah they haven’t ordered it yet! WTF??? They have had 2 months and they didn’t order it yet??? It has to be put in when you have your period. So now I have to wait another month and most likely I will be in Disney so I will have to wait 2 more months. I just want it in!! Not like I am having major sex or anything but I want to get it in and get the smaller lighter periods starting haha!!
Thats all for tonight!
In other news…tomorrow is my review yay!!!! I can’t wait! I will definitely be updating tomorrow with what happens!
In more other news…S from work bought me a book! We were talking about it last week I think and I said I would try it. Well he brought it in yesterday for me and said he got it for me. How sweet!!! It is called the “Devil in the white city”. Its history and architecture related. I can’t wait to start reading it. He is so nice!!!!! I love working with him. I am so glad they are letting me again. There was a joke going around that I wasn’t allowed because every time I worked with him I ended up in the hospital! It was just coincidence I think haha! But he does a lot of the schematic design work which is what I love doing. All the fun drafting and rendering. Yeah sign me up!!!!
I don’t know if it is just me or if they are trying to hype me all up I just don’t know, but I feel like everyone at work is praising me more than usual. Well I know they are I just don’t know why. Now don’t get me wrong I am basking in the “Awesome job” and “excellent work” phrases that are being told to me. I just wonder why now? I have been doing the same work before. I don’t know, maybe I am just over thinking haha!
What else, let’s see….Oh I got my period on Monday and I have been super happy ever since!! Haha! Maybe it is PMDD????? And I called Planned Parenthood today to schedule my Mirena insertion and yeah they haven’t ordered it yet! WTF??? They have had 2 months and they didn’t order it yet??? It has to be put in when you have your period. So now I have to wait another month and most likely I will be in Disney so I will have to wait 2 more months. I just want it in!! Not like I am having major sex or anything but I want to get it in and get the smaller lighter periods starting haha!!
Thats all for tonight!
Saturday, August 9, 2008
I'm a day late and a dollar short...
...but oh well haha!!!
I was thinking yesterday morning, as I was showering for work, how much I love what I am doing at work right now. I have been doing A LOT of initial design work for new projects. This is what I love more than putting out construction document sets. I love the sketching and brainstorming that comes with new ideas. I love using an entire roll of trace just to come up with one or two awesome ideas. It is great to see what can develop from 4 hours worth of scribbling. Then once the ideas are agreed upon, I sit down and hand draft them into beautiful pieces of artwork. Seeing your finished project in a presentation is an amazing feeling. To know that you drew that up and made it look like that is the greatest feeling in the world. And then when people tell you it looks great you feel even better!!!
All that blissful thinking got me daydreaming about working for my dream company. The one that I can’t work at yet because my health is too shitty to put in all the overtime and deal with the hassle of the long commute to Philly everyday. It got me thinking about how much I do love my field and how stupid I would be to go back to school to try to do something totally unrelated. I didn’t even get a chance to do what I want to do with my degree. Which BTW I am getting a frame for this weekend so I can hang it up at work. But I digress.
I plan on staying at Barton until I can no longer work (I am hoping to get at least another 2 good years outta myself). Then I can decide on the whole transplant thing and IF I decide to go through with it I can then apply at my dream company and hopefully work there once I am transplanted and recovered.
Maybe I only love it right now because I was out for so long. I do remember weeks where I was ready to scream because I was so bored. But I have my annual review on Wednesday (keep your fingers crossed for a great raise!) and I plan on telling them that I would like to help more in the interior design of some of the jobs we have. We have another ID person who just graduated in May who does all the ID work that we get – which is not a lot mind you. But I think management forgets that my degree is also ID so they never grab me for help. But I would like to get some of that experience. We did do an ID job back in the winter and I loved it. Nothing major just schedules, and finish call outs, but it was still ID work nonetheless. And if I can start doing more of that, and I don’t decide on the tx then at least I won’t feel like I wasted my degree!!!!
That's all the ramblings for today. It's gorgeous outside and I need to design a new Habitat house :)
I was thinking yesterday morning, as I was showering for work, how much I love what I am doing at work right now. I have been doing A LOT of initial design work for new projects. This is what I love more than putting out construction document sets. I love the sketching and brainstorming that comes with new ideas. I love using an entire roll of trace just to come up with one or two awesome ideas. It is great to see what can develop from 4 hours worth of scribbling. Then once the ideas are agreed upon, I sit down and hand draft them into beautiful pieces of artwork. Seeing your finished project in a presentation is an amazing feeling. To know that you drew that up and made it look like that is the greatest feeling in the world. And then when people tell you it looks great you feel even better!!!
All that blissful thinking got me daydreaming about working for my dream company. The one that I can’t work at yet because my health is too shitty to put in all the overtime and deal with the hassle of the long commute to Philly everyday. It got me thinking about how much I do love my field and how stupid I would be to go back to school to try to do something totally unrelated. I didn’t even get a chance to do what I want to do with my degree. Which BTW I am getting a frame for this weekend so I can hang it up at work. But I digress.
I plan on staying at Barton until I can no longer work (I am hoping to get at least another 2 good years outta myself). Then I can decide on the whole transplant thing and IF I decide to go through with it I can then apply at my dream company and hopefully work there once I am transplanted and recovered.
Maybe I only love it right now because I was out for so long. I do remember weeks where I was ready to scream because I was so bored. But I have my annual review on Wednesday (keep your fingers crossed for a great raise!) and I plan on telling them that I would like to help more in the interior design of some of the jobs we have. We have another ID person who just graduated in May who does all the ID work that we get – which is not a lot mind you. But I think management forgets that my degree is also ID so they never grab me for help. But I would like to get some of that experience. We did do an ID job back in the winter and I loved it. Nothing major just schedules, and finish call outs, but it was still ID work nonetheless. And if I can start doing more of that, and I don’t decide on the tx then at least I won’t feel like I wasted my degree!!!!
That's all the ramblings for today. It's gorgeous outside and I need to design a new Habitat house :)
Thursday, August 7, 2008
Article about ME
A friend of mine on CF.com keeps a blog about CF. She is a professional writer and her blog is dedicated to educating to population about CF. Back in May she wrote an article featuring me :)
Check it out...
http://understandingcysticfibrosis.blogspot.com/2008/05/career-spotlight-architectural-designer.html
She is an amazing writer and person!
Check it out...
http://understandingcysticfibrosis.blogspot.com/2008/05/career-spotlight-architectural-designer.html
She is an amazing writer and person!
Monday, July 28, 2008
My first day back to work
It went great!
ok thats it haha!!!!
Just kidding!
No really though it went really well. Everyone was excited to see me which made me feel really good. Soooo many people were like "we are so glad to have you back". It really does help a person and boost their ego!!!! And the one principle, head architect for those less informed haha, said to me after telling me why my cubbie mate got canned that everyone is excited to have me back because its hard to find good help these days and that it is a complioment :) I was super stoked because this is the one guy I was not to sure if he liked me or not. But apparently he does!!
It was great being back and feeling needed and like I was doing something useful with my time again. I liked being off but at the same time it gets really boring when there isn't much you can do. I like having purpose, having something to look forward to every day even if it is "just" work. That is one of the reasons deciding to do part time is so hard for me. I love being there every day. I may not enjoy the commute and I may get annoyed or bored some days but I am always doing something worthwhile with my time. I am doing something that makes me feel "normal". I am doing something that makes me feel good. I can see what I have done at the end of the day and it makes me feel great. It makes me want to work forever.
Ohhh how I could go on and on about my troubles of having to decide when to stop working full time. But I shall not bore the 3 readers of this blog ;)
Nite all and pleasant dreams!!!!
ok thats it haha!!!!
Just kidding!
No really though it went really well. Everyone was excited to see me which made me feel really good. Soooo many people were like "we are so glad to have you back". It really does help a person and boost their ego!!!! And the one principle, head architect for those less informed haha, said to me after telling me why my cubbie mate got canned that everyone is excited to have me back because its hard to find good help these days and that it is a complioment :) I was super stoked because this is the one guy I was not to sure if he liked me or not. But apparently he does!!
It was great being back and feeling needed and like I was doing something useful with my time again. I liked being off but at the same time it gets really boring when there isn't much you can do. I like having purpose, having something to look forward to every day even if it is "just" work. That is one of the reasons deciding to do part time is so hard for me. I love being there every day. I may not enjoy the commute and I may get annoyed or bored some days but I am always doing something worthwhile with my time. I am doing something that makes me feel "normal". I am doing something that makes me feel good. I can see what I have done at the end of the day and it makes me feel great. It makes me want to work forever.
Ohhh how I could go on and on about my troubles of having to decide when to stop working full time. But I shall not bore the 3 readers of this blog ;)
Nite all and pleasant dreams!!!!
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