I Love My Job!

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

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

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

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

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

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

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

A Night in the ER :(

Well I spent 4-hours in the ER and didn't get the treatment I needed. I've lost 10lbs in 9 days due to some serious stress during the last week and a half. I've had gastro problems constantly for about 18-months, but the last couple days has been to the extreme. I got a referral to a specialist and when I called to schedule an appointment she was maxed out on patients my type of insurance, but I was told if I went to the ER where the doctor is on-call then there would be an exception to the policy. Besides the gastro problems I was seriously flaring due to undo stress.

After a long day at work I packed my bag, grabbed my school books and some snacks and I was ready to settle in for the night. The ER doc listened, but he didn't "listen". I've had 4 colonoscopies in the last 5-years, with two having pre-cancerous polyps. My dad's side of the family have mostly died due to colon cancer. After 4-hours he told me that I "probably" had a stomach virus......go figure.

I had a photo shoot at work this morning and I used the afternoon getting a new gastro referral. I'll be since on Tuesday, thank GOD! I have 14 speciality doctors and this is the first time I've had a problem like this, but you have to live and learn and not let it get to you.......

Down2earthlupie

Chemo Treatment Here I come!

Well I saw my nephrologist (kidney doctor) and I will have a kidney biospy after I go to ND and Vegas and then I will start chemo after I return from Germany and Prague. Over the next few months I will have to take chemo once a month for 8-10 hours for 6-months. Then the first time I must take a week off since my immune system will be shot and I can't be around people. So I will telecommute. I will be out on average 3-5 days after treatment and I will do my treatment after my overseas trips.

People take chemo for many reasons. In my case I have kidney involvement and I am the max dose of Cellcept, it's a medicine that heart, lung, and kidney transplant patients take. It has some mad side effects, I started losing my hair, weight and I'm going to the ER tomorrow night because I can't get in to a gastroenterologist and I've been having some serious bowel problems and I've had pre-cancerous polyps removed not once but twice.

Chemo treatment is extermely effective, but I will now have a higher risk for all types of cancer, I can't have children and I will have to take meds to counteract the Cellcept and chemo. http://www.arthritis-treatment-and-relief.com/cellcept-and-lupus-nephritis.html during chemo I will only have to take the chemo and no other meds. I'm on 14 at the present time. Thank God.

This disease has put a serious strain on my marriage. My husband and I been married for 13-years and been separated for 6 of those years. I honestly don't how much we can take, there has been a lot of ups and downs all based off my illness and deployments. We'll see......

Time for pain meds. Oh I had my first aqua therapy appointment today and she truly smoked me, but it's great for your joints. Good night........

Toni's day with Al B. Sure!!!!!!!!!!!!!!!!!!!

Hello All,

The last few days have been busy, but fun! At my job we do a lot of voice overs and interviews with artist and actors when they drop a new album or release a new movie.

Does anybody remember Al B. Sure? He dropped "Killing me Softly" back in the late 80's. He's been producing for the last 23-years. Well his sister is in Afghanistan and he wants to support the troops. Being who I am I told him I could coordinate a trip to Iraq, Afghanistan and Kuwait. He wants me to go with him. I told him I would love to, but I don't have the money in the Army, go figure. He said he would pay for my trip. Hey mom I'm going overseas.

I'll post pictures later this week.....time for pain meds. I feel like that Dunkin Donuts guy, "I got to make the donuts". Good night.

Down2earthlupie

Lupus 101 - How Toni got diagnosed

Lupus 101 - There are four types of lupus, Systemic Lupus Erythematosus (SLE), Cutaneous or Discoid Lupus Erythematosus, Drug-induced Lupus Erythematosus and Neonatal Lupus. More than 1.5 million Americans have some form of lupus. I have SLE and a mild case of Cutaneous Lupus Erthematosus.

Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are: Inflammation of the kidneys (lupus nephritis), an increase in blood pressure in the lungs (pulmonary hypertension), inflammation of the nervous system and brain, inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes, and hardening of the arteries (coronary artery disease).

The symptoms for lupus are the same for females and males and numerous. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, Fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.

Bottom line I'm a walking time bomb. My disease started off with my hands and arms swelling, and then I got angioedma, swelling of the lips, eye sockets and the whites of my eyes. Then I walked around with 2/3 of my lung collapsed for 10 months until I had surgery. I still have a partially collapsed lung....go figure. Then my kidney went to hell and a hand basket. Now I'm on a medicine that cost $2,500 a month...thank God for Tricare insurance.

I have over 10 aliments, 14 surgeries since 1998 till now, 13 medications I take daily and 14 specialty doctors. Scheduling is hell for me when a last minute meeting gets thrown on my plate.Be happy to go to the dentist twice a year and seeing your PCM only when you need them. Many of us Lupies (what lupus patients call ourselves) see twice as many physician than I see, they are or have lost their hair (me too), are on chemo treatment and in a wheelchair.I just found out that I will go through another kidney biopsy which will result in a 6-month trial of chemo. I won't have to take any other lupus meds and I can get a guaranteed 7-8 hours of study time :) you got the look at the bright side.

Time for pain killers.......

Down2earthlupie

OMG! Don't judge a book by it's cover

I was feeling like crap last night....I had to take Demerol....thank God. I woke up feeling like a 85-year old grandma all bent over, every step hurt. Oh did I mention that I threw up 4 times yesterday, once on the way to work (I couldn't even get 2 miles from the house) twice at work and one more to top off my might. Got to love chemo drugs! At least my kidneys are functioning and I'm not on dialysis.

Today I feeling okay and so I wet to my first aqua aerobic class. My physical therapist recommended it. I thought I use to bodybuilding and run my own personal training business with my husband; it will be a bunch of overweight aging women. Boy oh boy was I wrong. I'm sitting on my coach and I can barely get up to go to the bathroom. I stopped 10-minutes before the end of class.

Food for thought don't judge a book by it's cover. I need more drugs......good night.

Down2earthlupie

The day in a life

Hello all - I am sooooo passionate about two things in particular....lupus and fibromyaglia. I have both and I'm currently servicing my country for 17-years now as an active duty Army officer. I am becoming a true advocate as I learn more about my diseases.

I always get the question "how are you doing?" from friends, family and doctors. I always give that cocked-eye look and question them, what this morning, this after or right now. The one thing that they don't understand is that my diseases wax and whines basis on the time of day and the wind.

By blogging about my life I hope it will help others understand mine. This can give someone a feeling of what it's like to walk in my shoes.

Happy Blogging!
Down2earthlupie