I know I haven't posted anything for a while, but that doesn't mean that there isn't anything going on. It just means that I'm lazy about getting it written.
    First off I have to give a HUGE shout out to the Lord for moving things so quickly for my friends Traci and Bill Vega. They will be traveling the end of this week to bring home their forever little girl. Zayla's adoption will be finalized very soon. I can't be more happy for them. My heart melts for families who are able to open their hearts and homes to the orphaned. I always wanted to adopt but with my health over the last 20 years or so, it just wasn't anything that I was ever able to take action on.
    I am battling insomina still and it is driving me nuts. I have to say that a couple of hours a sleep a day is NOT enough to function fully. Thus, my body is not functioning or fighting as hard.  I feel like I have been in the hospital more than at home recently. and this is where we are with all that.  My trip to China is still pending, but looking less likely to be able to go. With this diease hitting and affecting the heart I am not able to fly. We are still trying to find the right combination of medications that will help stablize things so that I will be able to get through the days without any 'attacks'. We do have it controlled to about 2 attacks a day but that takes about 8-10 hours of the day to recover. NOT A GOOD THING!!!  If you have ever had a charlie horse (muscle spasm) than you will understand when I say that it is painful. That is what is happening to my heart. MAJOR muscle spasms. They last for 30-45 minutes but it takes all the energy and strength that I have for several hours to recover. The medications are strong enough that it just makes me want to sleep, but I can't sleep nor function. It just feels like I am taking up space and breathing good air. Too weak to get off the couch or bed (wherever I am at at the time). I have had a group of wonderful ladies here at the towers step in and help me out more. bringing meals, and doing laundry and such.
    My niece Kimberly got married this past weekend. Dave took me down, which was an almost 2 hour drive each way. The wedding was beautiful and it was great to see family. And I would do it all again! The down side to it is that I was totally exhausted for a couple of days, even more so than normal. i have a hard time traveling any distance right now. I sure hope that all changes soon.
    Tomorrow I will be spending the day at KUMed for more testing and to get my tubes changed out. This is the first change out since the surgery. I have a list of questions for the doctor this time regarding the tubes. Why all the infection this time. I just can't seem to get rid of it for more than a couple of days at a time. Chronic UTI's is for the birds. We use extreme caution with cleaning, draining and caring for the current tubes, but this time around it just seems to harder to fight the infection. antibotics are good but I can only take so many without affecting other things. The bowels are not working properly, and haven't since dealing with the CDIF. The doctor has mention a colostomy several times. Not that I'm looking forward to that at all. Just another bag to deal with. But if that is what it takes, please Lord, help me through this process.
   The MRI tomorrow will be to see the progress of this diease. We do this every 6 months to keep track of things. I never look forward to the results as it never seems to be good news, at this point I would take "no change" as the best news. Even with that, it could mean that the deteration isn't getting worse, but it doesn't mean that the internal issues are not changing. At this point, the lungs, heart, bowels, bladder and kidney's are affected, along with all the muscles. Trying to keep up with the 31 different medications I have to take several times a day is a charting process of its own. Sometimes I wonder if the medication is causing issues in itself. Is it possible that over medicating is an issue. Taking one thing to help with the side effects of another. When will all of this stop? Right now my prayer is for a day to really rest, be pain free "without pain pills" a day with lots of energy and strength. I have accepted that I may never walk again, and I'm ok with it (although I will never give up hope), but I would like to be able to reach out and hug with both arms.
   I will NEVER give up hope! I WILL continue to strive to search for that cure, that treatment.

Paralyzed Jefferson City girl performs with cheerleading team

Paralyzed Jefferson City girl performs with cheerleading team: "7 year-old Margaret Romph will be on stage Saturday in her wheelchair performing with her former cheerleading teammates at a competition in St. Louis."

please take a look at this amazing little girl. She is such an inspiriation to many.

One day at a time

So, the saga continues.  I will be having a biopsy done on my left breast next week.  This will be done at the Kansas City Cancer Center. The doctors said that because of my family history we need to get a jump start on this.  He is not saying it is cancer yet.  My mom and grandma both have had breast cancer and masectomies.  I am trying really hard to not to worry about this yet as I don't want to get worked up with unnecessary emotions.  I know that the Lord is in control and that he is bigger than anything that I have, had or am going through.

Dad went into heart failure last night around 10:00pm, the transferred him to the hospital and have him stablized in ICU. He has a lot of fluid built up around his heart and lungs so they are giving him stuff to pull of the fluid.  He is also dealing with pneumonia. I can't go see him right now which makes it hard on me but he understands. Paula is keeping me informed on everything and I get to talk to him when she is at the hospital. Please keep daddy in your prayers for healing, but more importantly for his salvation.

Another 'attack' today lasting over an hour. So I haven't had any energy to do anything today, just getting up to eat is too much it seems like.  Thank goodness for granola bars and fruit today.

what a day

Things are still going well, my body is still ridding of the toxins and junk.  I is scary to think there is so much going on in there.  I have had a couple 'attacks' and goodness I so cried because the pain was so extreme.  After it all settled down I slept for several hours and wiped out for the rest of the day.  The meds they gave me for the acid reflux just isn't working and that leaves me to believe one thing, and I don't want to think of it.  I am heading back to the cardiologist for further testing.  Regardless of what things show, I know that if it means my time is around the corner, I will be whole and in the such a better place looking down, eating lots of cheesecake and not gaining an ounce.   The only thing that really scares me about "going home" is that I have unsaved friends and family, I want to see saved to ensure that I will see them again.  I know it is a personal choice for each person, and know that they are the ones who have to live with their own decisions, it would just be heart warming to know that I will be seeing them again in Heaven.

I spent the day with my very best friend/sister, Paula, today. She is truly the best medicine I could ever have.  I had a doctor appointment with the urologist who had said that I don't need to go back for a year.  I can just call to order my supplies to change my tubes and meds.  What a blessing that is. One doctor to mark off my list for a while. YEAH!!!! 

Paula and I went to the AMAZING Cheesecake factory (my first time) for lunch, and to visit my therapist/friends at the rehab center. Although I don't miss the place, but I miss the people.  I have some amazing friends there and love to see them.  We follow and keep in touch with each other on facebook, but there is nothing like seeing their beautiful faces in person. After leaving there we headed to Joann's one place that I don't get to unless she is with me. Really sis, you need to come up more often.  After all that it was time for her to leave, and I was so ready to lay down for a little while.  But it is always sad to see her go home. I love and miss you all the time sis.

OK now for my new treatment update:  I am seeing very little progress yet, but it could be that there is so much junk in my body that it will take a while.  The rash seems to get worse shortly after taking MMS. I did contact someone about it, and was told that that is a good thing, and not to worry about it.
One thing I am starting to notice, is that my eye sight isn't as blurred when I don't have my glasses on.  I will be keeping an eye on that as well.

I am working harder to eat healthy, not that I wasn't already, but just adding more fruits and veggies through juicing.  I really love the fresh orange and grapefruit juices, but I can't take them as much as I'd like as it interacts with the MMS.  basically it voids it all out.  I'm not giving up on it yet, as long as I see results (ridding of toxins) I will continue to use it, and keep praying for the results that I would like to see.  As always I have to keep an open mind and know that whatever the Lord has in store for me is what will happen. He has never let me down as of tonight and know he has not plans of it in the future, even when I feel like giving up on myself.

Prayer request: my little friend Brody is in China right now for the stem cell treatment. I am keeping in touch with his mom and learning so much more about this treatment.  Treatment and travel are expensive, but life is priceless.  Thank you Lord for all the people who were able to help Brody travel by donating their skymiles for them to travel, to those who donated toward his treatment, and for all those who are praying them through it all.

days 4 & 5

There really isn't much of any change than what I have talked about already.  Still NO chest "attacks"  the rash continues, and I am sleeping better.  I can't say that this isn't a change. because it is a big change and I really do like this.  Better sleep, is GOOD!!!  I am taking the drops to 5 drops today and see how things go. 

Yesterday was my 44th birthday and I really did enjoy it.  I woke up with a killer headache but it went away by about noon.  Ashley, Brian, Chris, Aidan, Rita, Paula, Paul, mom and dad all called to wish me a happy birthday.  Ashley and Brian sent beautiful bouquet of flowers, and Rita made a really cool painting for me.  I can't wait to get it hung up.  Via facebook I received 54 birthday wishes and that really made my day.  It seems like my birthday just comes and goes each year with few people recognizing it, because of the hustle and bustle of the holidays.  I will always remember when I turned 40 and my girls made dinner and decorated the house for me.

I will be starting to work on my goals today and breaking them down into baby steps so I can reach them.  I also am hooked up with a program called "Gabe's gifts" to honor a little boy that passed away at birth.  This program will be making baby blankets to give to sick babies while in the hospitals. 

day 3

First off let me wish a Happy New Year. This year will be filled with many exciting things and adventures. Full of blessings from the Lord.

Day 3 went ok. It really did make a huge difference in using fresh made juice with the MMS.  Stayed at 3 drops yesterday and planning on trying 4 drops today.  Nothing major to report.  I have noticed a rash (that doesn't itch) on my legs and belly, I guess this is another way for the toxins to leave the body, because when I woke up today there was no rash. I notice that when I drain my cath bag that the urine is not cloudy anymore, thus leaving me to believe that all infection is gone. The warmness on my chest continues after I took the MMS. Is it taking care of the scleroderma on my lung, my heart, the esophagus, the reflux? I can only hope and pray.  I haven't had any more "attacks" since starting the MMS. 

I am getting ready to take my first dosage today, I know it is 1pm in the afternoon, but I laid in bed until noon, reading. No place to go and not expecting company so I'm playing it lazy today.  I do have to kick it up on my fluid intake and will work on that today. 

My new year goals this year are big, but I can do them if I just stick to it. 
1.  the book I am writing, I want to have it finished by the end of the year
2.  I want to grow closer to the Lord and be open to His direction in my life
3.  My health, I want to regain more usage of my body (using MMS, diet, exercise, treatment)
4.  I want to hold at least 4 hug campaigns, this sounds silly I know, but do you know how much a simple
     hug can mean to someone.  It will be an interesting to see how this works out, I will give more  
     details later.
5.  I am working on trying to organize my apartment and life. it seems to have been in chaos for so long
     that I it will take some time.

This is alot I know on top of just getting through daily stuff.  My energy level needs to increase greatly to get through it all.  Lord I am asking for the strength and guidance for all of this. 

day 2

I made it through day one slowly.  Working up to 3 drops of MMS every two hours. Every hour was so time consuming, it was like I was sitting and watching the clock.  I would rather take it a little slower than to be a slave to the clock.  I had to stop at the 3 drops as I started to get the diarrhea part.  YEAH!!!  but in reality it is a good thing, it means that my body is flushing out the toxins that this is killing off.  I will stay at 3 drops today and try to increase it tomorrow again. 

What have I noticed?  well, in the afternoon yesterday as I was taking the MMS, I got a very warm almost hot feeling that covered my chest area. I don't know what this means, but it happened 3 different times.  I also noticed that last night I got 6 hours of good sleep.  My legs didn't cramp up and I didn't wake up with an 'attack' like I have every night for the last couple of weeks.  For me this is huge. 

It made a big difference using the freshly made juice each time, I just keep my juicer set up and throw in an apple and a few grapes to make the juice.  No citrus fruit can be used as it neutralizes the effects of the MMS.  With the juice added it doesn't taste too bad, actually at this point you really can't taste the MMS unless for some reason you have it on the edge of the glass, which I did and I have to say that that taste is like the worst think I have put in my mouth.  knowing it won't hurt me I just chugged the juice quickly. 

Let see what happens today, will be staying at 3 drops all day.