Journal

Hello  to all my friends here. It has been way to long for an update here. I have been crazed to say the least over the past two months. Last update we were looking at the possibility of galbaldder. Well that wasn't it. What it turned out to be was gastro-parisises. It would seem that between the all of the medication that Les is on in concert with the MS she is unable to digest solid foods at the same rate as person without MS. the gastro emptying test showed that 4 hours later she still had 80% of her food in her stomach. Needless to say she lost 20 lbs (20 lbs that she did not need to loose). And the kicker is that it will take now three times as long to put it back. This is something that does happen to individuals with MS so it is just another thing to add to the list.

   Well she is home now and we are trying to get her back on the mend. Wewant to start our MS Support Group in november but with her back in the hospital we are having our first meeting tomorrow night. We  beleive this is going to be a really good thing and we are looking forward to providing support not only to the individuals with the condition of MS but also the caregivers. The caregivers often are over looked. They carry a great burden and are many times even more frustrated than the person affected.

     We are going to meet once a month in Middletown Delware and after the new year  We will be in Dover

                  Well it has been a few weeks since I have had the opportunity to sit down and write a new entry. Since Leslie has been home it has been very busy in coordinating as always the doctor appointments. It never ceases to amaze me that when a patient is sitill in pain after coming home from the hospital and we still do not have a clear diagnosis as to the cause, doctors that we contact for second opinions seem to think that the pain will magically go away by the time we see them. I guess it is the dream that they have for easy money.. oh well you no longer have the pain, I don't have to do any work.... you are all cured... pay the bill(a few hunderd dollars- to sit on the rears with their hand out)... and get out...next! 

               We have had all of the GI test with the exception of one which will be next week and it is looking more and more like some difficulty with the gallbladder. What angers me the most, is that because of the entense pain that Leslie goes through each and everytime she eats, she is not able to take in anything but extreme soft food and a great deal of liquids. She has lost 10-15 pounds already and cannot afford to loose any more. She is already down below 115 and at 5'7" that is not good. We are in costant prayer and know that God is providing the necessary strength to walk this path. Friday we celebrated our 21st wedding anniversry and I am extreme thankful and I am praying for another 30 years to be with my best friend.

             We are both looking very much forward to November since that is when we are going to have our first MS Support Group meeting. The Lord has place on both of our hearts to take what we have gone through and what we have learned and share it with others. We are starting the support group with the affliation of the National MS Foundation to have a chapter in Middletown Delaware and then in December we will have the Dover chapter start it's first meeting.

              We realize that it may take a year to really get the chapter established, but that's ok. We need to educate the patient and educate the caregiver. When a person is afflicted with the condition of MS, many individual sercome to the infamous camp of pity. I want to make sure that one in our local community here in Delaware realize that they may be temporarly down but

not permently out. Ok so it take's a little longer to do everything but in no way should that dictate that we are out for the count. We want to empower those with the condition to get all that life has to offer no exceptions. 

Well it is a week since the last journal entry, just haven't had time to sit and write at the computer. All of the test came back negative with the exception of the ultrasound. This showed a cause of concern to be discussed with the OB/GYN  doctor which we did the follow up yesterday. It never ceases to amaze me that when the medical professionals don't know something  they can't bring themselves to say I don't know. It instantly becomes, well we didn't find anything so you 're ok and get out, you can go home. But they always forget one major factor.. THE PATIENT IS STILL IN PAIN!!!!!!!!!!!!!!!!!!!!!!!!!. Well after insisting that we find the root cause of the pain, which is why I brought Leslie in the hospital to begin with, it was revealed that there are multiple  issues happening. First there is a possible problem with the gallbladder, second problem with a tube in the ovaries.  We were able to get her home on Sunday night from the hospital, and man it felt good to have mama home.

     I must confess I am now run down fighting a cold. going back and forth to the hospital and going to work can push the limits but it had to be done. Taking all my cold med's and extra vitiamin C, drinking alot of tea and soup. Last night I finally was able to get some rest. Still broken sleep( When mama doesn't sleep papa doesn't sleep) but I felt alot more refreshed this morning than I have over the last few days. We were able to see the pain doctor yesterday as well at the last minute which was a blessing. We love this doctor, just can't stand the support staff that he has in one office. We have one more doctor to see this week to discuss the next step with the gallbladder.