I'm currently in Germany for a Public Affairs Representative (PAR) Seminar. It's the first one our organization has conducted. The public affairs officer who planned the seminar really took the time to get if right the first time. I was extremely excited and I was able to reach out and touch each and everyone of the PARs one-on-one.
At the end of the seminar I knew why I was meant to be a spokesperson and work in the field of public affairs/public relations. Little things like this make all my aches and pains of Lupus and Fibromyaglia go away. Plus it doesn't hurt that I like to talk A LOT :)
The military has various career fields, I started off enlisted as a combat medic (91B), then I became an officer in the engineer field (21A), and when I became a major I changed over to public affairs (46A). I was able to attend the Defense Information School (DINFOS) for three months before being thrown to the wolves. My PARs across the world do not get this specialized training, therefore we must provide it for them. I would agree that everybody needs training and periodic re-training to make them the best for the job......
Down2earthlupie
Wednesday, July 15, 2009
Monday, July 13, 2009
Going to the Restroom on Your Own........
As I laid flat on my back for 6-hour following my kidney biopsy I had a lot of time to answer e-mails on my work BB and think about where my life has been. First of all I can appreciate being able to go to the restroom on my own. You can't get up after having this procedure do to hemorrhaging, so either you don't go or use a bedpan. I opted to wait :)
Over the past few days I have met people or had friends who stated 'you are so positive considering all that is going on with you both medically and personally, but you still maintain a glow and a upbeat attitude'. People with Lupus and Fibromyaglia must keep positive family and friends around you because life is too short to be 'flaring' because of negativity. I'm happy to be alive and only have a few 'bad' days. It could always be worst.
Always thank your higher power for what you have. I do it everyday.
Down2earthlupis
Over the past few days I have met people or had friends who stated 'you are so positive considering all that is going on with you both medically and personally, but you still maintain a glow and a upbeat attitude'. People with Lupus and Fibromyaglia must keep positive family and friends around you because life is too short to be 'flaring' because of negativity. I'm happy to be alive and only have a few 'bad' days. It could always be worst.
Always thank your higher power for what you have. I do it everyday.
Down2earthlupis
Thursday, July 9, 2009
My 17th Surgerical Procedure.........
It's almost 1am on Friday and I've been awake since Tuesday evening. What for do you ask? Because I'm nervous about what this kidney biopsy will bring. I remember when I was put on Cellcept when I first went into the early stages of kidney failure. I was totally against it. Now that I'm on the max dose of 3,000mg and my kidney's aren't making the progress that my rheumatologist and nephrologist wants, so at their urgency I'm getting another kidney biospy and start chemo therapy ASAP.
As I have reflected over this period in my life, I've realized that I've had 16 surgeries and procedures in my lifetime with the majority of them happening after my initial diagnosis in 2006. I'm a little scared and relieved to "really find out" what is going on with my body. Lupus patients can go through periods of remission and just like that they are flaring again. I hope and pray this is what is causing my extreme flares lately. I would rather know now so we can come up with a plan of attack with my 15 speciality doctors.
I better get a few hours of sleep before surgery......
Down2earthlupie
As I have reflected over this period in my life, I've realized that I've had 16 surgeries and procedures in my lifetime with the majority of them happening after my initial diagnosis in 2006. I'm a little scared and relieved to "really find out" what is going on with my body. Lupus patients can go through periods of remission and just like that they are flaring again. I hope and pray this is what is causing my extreme flares lately. I would rather know now so we can come up with a plan of attack with my 15 speciality doctors.
I better get a few hours of sleep before surgery......
Down2earthlupie
Tuesday, July 7, 2009
Yet Another Disappointment
Well I was all set to get my kidney biopsy. I thought I had everything taken care of, appointment made - check, pre-authorization submitted - check, arrange for my mom to stay with me - check, found something for my friend from Prague to do - check and pack for the hospital - check.
Well my mom flew in when we flew back from Vegas, I stopped eating and drinking after midnight. My nephrologist nurse called to let me know they were still waiting on the approval. I had a procedure at this hospital at the end of May, so what's the problem? But she did say not to cancel and she would call me at 7:30am and my procedure was at 8:30am. 7:30 came and no approval yet.
So I spent all day on the phone with my nurse, the insurance company and the hospital. Hopefully the insurance go through and I can be put on hold for tomorrow and the last appointment is 1:30pm. Cross your fingers. I just spend $350 to get my mom here for all three procedures (kidney biopsy, colonoscopy and endoscopy) and I will be pissed if one of them fall through.
Usually my insurance is on top of it, but I know the holiday messed me up. We'll have a go at it tomorrow......
Down2earthlupie
Well my mom flew in when we flew back from Vegas, I stopped eating and drinking after midnight. My nephrologist nurse called to let me know they were still waiting on the approval. I had a procedure at this hospital at the end of May, so what's the problem? But she did say not to cancel and she would call me at 7:30am and my procedure was at 8:30am. 7:30 came and no approval yet.
So I spent all day on the phone with my nurse, the insurance company and the hospital. Hopefully the insurance go through and I can be put on hold for tomorrow and the last appointment is 1:30pm. Cross your fingers. I just spend $350 to get my mom here for all three procedures (kidney biopsy, colonoscopy and endoscopy) and I will be pissed if one of them fall through.
Usually my insurance is on top of it, but I know the holiday messed me up. We'll have a go at it tomorrow......
Down2earthlupie
Sunday, July 5, 2009
Not as Young as I Use to Be
The girl's weekend to Vegas is almost over. It was a great time, but I couldn't hang with these 20- and 30-somethings. As I sat in a club at 5am this morning I began to reflect on my life and where it has come from and where it is going to. Back in my 20s and 30s it was no thing to hang out to all hours and get up the next day like it was nothing. Then came along Fibromyalgia and my world has changed.
Fibromyaglia forever changes your life. My disease seriously waxes and wains. One day I would be great, like a "normal" person, then the next I'm using my cane and popping pills to get through the day. I always get the "but you don't look sick" quote. Yes, I don't physically look sick, but inside I'm literally dying. I can be sitting in front of you, smiling and joking, but inside every muscle, trigger point and joint is screaming, "take some pain meds, take them NOW!"
One of my many therapist told me, "Toni this is your new normal, you can't do what you use to do, this is your new normal, get use to it". As a Fibromyaglia patient you mostly suck up the pain as much as you can until you can get into the comfort of your own home and just release.
As I sat in the club I've realized I must take care of me and only me right now in this time in my life. If my friends don't understand then they are not true friends. My life is a difficult one and changes with the wind, so I might not always be there as a friend because I must deal with my medical issues. So please, if you know someone with a chronic illness give them a break because you don't know their struggles or have walked in their shoes......
Down2earthlupie
Fibromyaglia forever changes your life. My disease seriously waxes and wains. One day I would be great, like a "normal" person, then the next I'm using my cane and popping pills to get through the day. I always get the "but you don't look sick" quote. Yes, I don't physically look sick, but inside I'm literally dying. I can be sitting in front of you, smiling and joking, but inside every muscle, trigger point and joint is screaming, "take some pain meds, take them NOW!"
One of my many therapist told me, "Toni this is your new normal, you can't do what you use to do, this is your new normal, get use to it". As a Fibromyaglia patient you mostly suck up the pain as much as you can until you can get into the comfort of your own home and just release.
As I sat in the club I've realized I must take care of me and only me right now in this time in my life. If my friends don't understand then they are not true friends. My life is a difficult one and changes with the wind, so I might not always be there as a friend because I must deal with my medical issues. So please, if you know someone with a chronic illness give them a break because you don't know their struggles or have walked in their shoes......
Down2earthlupie
Friday, July 3, 2009
My World....
This week was quite interesting. I learned that my gastroenterologist wants to do two procedures ASAP in addition to my kidney biopsy. A colonoscopy, my 3rd one within a 10-month period, my 5th one in 5 years and an endoscopy. I guess it might have something to do with a 10lb weight loss within 9 days, vomiting four times in one day and an increase in bowel movements.
I better enjoy my 4th of July girl’s weekend to Vegas since I will be under anesthesia three times next week between Tuesday and Friday. My girlfriend from a Czech Air Force Public Affairs Officer asked during our course “What is this that I hear about the Chippendales?” And now I’m on my way to Vegas for the 4th time this year. So need to have a little bit of fun before the surgeries, procedures and chemo.
Lupus can cause extreme swelling of the joints and the organs. Some people get both whereas others have one or none. I’m the lucky one, I got both. I’ve got a plural effusion, swelling around my kidney, heart, lung and liver. I’m seeing a pulmonologist for the constant shooting pain in my lung when I breathe, cough, yawn, sneeze of laugh. She did give me some good news that she had a patient that had chemo treatment five year ago and the lupus is at bay and they are on minimal lupus medication. She said all the swelling, inflammation and other lupus symptoms should go away with the chemo therapy. I start my first round after I return from my trip to Germany. I’ll keep you posted.
Down2earthlupie
I better enjoy my 4th of July girl’s weekend to Vegas since I will be under anesthesia three times next week between Tuesday and Friday. My girlfriend from a Czech Air Force Public Affairs Officer asked during our course “What is this that I hear about the Chippendales?” And now I’m on my way to Vegas for the 4th time this year. So need to have a little bit of fun before the surgeries, procedures and chemo.
Lupus can cause extreme swelling of the joints and the organs. Some people get both whereas others have one or none. I’m the lucky one, I got both. I’ve got a plural effusion, swelling around my kidney, heart, lung and liver. I’m seeing a pulmonologist for the constant shooting pain in my lung when I breathe, cough, yawn, sneeze of laugh. She did give me some good news that she had a patient that had chemo treatment five year ago and the lupus is at bay and they are on minimal lupus medication. She said all the swelling, inflammation and other lupus symptoms should go away with the chemo therapy. I start my first round after I return from my trip to Germany. I’ll keep you posted.
Down2earthlupie
Thursday, July 2, 2009
North Dakota...Yaw Sure
I’ve had a world wind last two days in ND. I’ve never been farther north than Kansas. I was in Minot, ND which is a beautiful area with a small town feel. The residents were warm, welcoming and proud of there city. We metropolitans aren’t as proud of cities as these residents.
Minot Air Force Base host approximately 6800 Airman and their families. They got a new massive shopping center. This was my first grand opening and it was AWESOME. At first I was reluctant to travel so far north, but I’m glad I did. I was able to meet Airmen that were so happy to experience such a wonderful facility as large is in a Wal-Mart, 20 miles away. In Dallas you see one literally every 3-5 miles. I definitely left being fulfilled. Don’t judge a book by its cover…..there’s always a great story in between those covers.
Down2earthlupie
Minot Air Force Base host approximately 6800 Airman and their families. They got a new massive shopping center. This was my first grand opening and it was AWESOME. At first I was reluctant to travel so far north, but I’m glad I did. I was able to meet Airmen that were so happy to experience such a wonderful facility as large is in a Wal-Mart, 20 miles away. In Dallas you see one literally every 3-5 miles. I definitely left being fulfilled. Don’t judge a book by its cover…..there’s always a great story in between those covers.
Down2earthlupie
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