Ramblings

[Guest guest]

Hello good people!

Boy do I miss you guys when I can't get on line. It's sometimes hard

to sit at the computer for a long time for different reasons--one, my

tailbone is so painful I can't sit for long, hands hurt to type, and

two, my husband hates to have me out of his sight for very long. He

is adjusting to recently being diagnosed with hypoglycemia (after

being told he had a stroke)and is afraid to be alone. He is just

beginning to see that I am in pain, especially when I fell down the

stairs night before last.

He had a terrible nightmare last night (which I understand is common

with diabetes) screaming and thrashing. Scared me so much I had to

get up and go potty. He went right back to sleep, and I stayed

awake. Odd thing is, when I went to bed I wasn't in much pain (for a

change) and was sleeping pretty good. After his yelling woke me up,

everything started to hurt like crazy! I don't know if this was a

reaction to the adrenaline rush, or a delayed reaction to the fall.

I love the idea of the pool party and hope I can splash around with

you guys. Can I bring my 2-year old grandson? He is my cabana boy

when he's visiting. He is taking such good care of his mommy, and

says he will feed his " baby sit-ters " when they're born (for those of

you who don't know, my daughter is expecting triplets.) He gets his

mommy drinks of water and rubs her feet.

We had a good visit from friends Ron used to work with up in

Illinoiss. They drove 5 hours yesterday to visit us. is the

kind of guy who doesn't ASK if you need prayers, he tells you he has

been praying for you. And we had a ball at lunch yesterday with

and Phyllis, Ron and me, , Duane, and TJ, at our friend 's

bookstore. is in a wheelchair with profound cerebral palsy,

but he runs a great business and he is a wonderful friend. I just

look at what he's accomplished with his physical limitations, and it

makes me feel better.

OK, I know this is long, but I have to ramble when I can. After a

short time I feel like you are all buddies and it's great! Hope you

all have a peaceful pain free Sabbath, however or whoever you worship.

God bless,

Judi

[Guest guest]

Hi Judy,

Sorry to hear that you fell down the stairs. I hope that you are alright.

Be sure to have those pains checked out if they persist. My brother-in-law

did that last year and broke his tailbone. He couldn't sit for the longest

time, and boy did we have a good time kidding him about it. Don't worry

about rambling, I have my moments too. That's what we're here for. We love

to hear from you.

Hugs

Stacey in PA

[Guest guest]

I'm glad you got all the Social Security benefits. Have you talked to your

doctor about your pain treatment? Please don't wait 'til August. Call him

now.>

You'll be in my prayers,

Sincerely,

Ana

>

[Guest guest]

Gaynel,

Sorry - a rheumy is a rheumatologist - they specialize in dealing with arthritis of all kinds - so the rheumy is the specialist that deals with my lupus. I guess the reason lupus falls in the rheumy category is because it so often causes joint pain and inflammation. With lupus, you often have other specialists involved if lupus decides to attack the organs. Most often lupus chooses to attack the kidneys so you would also be under the care of a kidney doc (nephrologist). According to my internal med doc, if you can have a total understanding of lupus and all the things it can do then you have got medicine licked! Lupus is a very tricky disease and there really is no end to the things that it can do/cause. It is often very difficult to determine whether or not lupus is the cause of various problems. Also, it may not even really matter whether or not lupus is the cause since with lupus, you basically treat the various symptoms. It seems you often have three different mind sets when it comes to lupus. 1. Lupus is responsible for every single ache, pain, medical problem, etc. in any patient who has lupus. 2. Even though the patient has all sorts of strange medical problems, lupus has absolutely nothing to do with any of them. 3. The truth is somewhere in the middle. the patient has lupus and lupus is probably responsible for many of the strange things the patient has going on but lupus may or may not be responsible for everything.

My internal med doc and my rheumy seem to follow #3, which is, in my opinion, the most logical. The truth is we will probably never really know for sure exactly what all lupus did/did not cause and I'm not so sure it even matters. Mostly I find it very interesting. The previous rheumy whose care I was under for almost 6 years was of the mindset #2. Yeah, I have lupus, but lupus didn't have anything at all to do with any of my problems. It had nothing to do with the fact that I had all these joint problems that led to numerous surgeries. I've had 3 shoulder surgeries, surgery on the ulnar nerve in my elbow, surgery on the damaged bursa of my left hip, surgery for a torn cartilage in my right knee. According to my current rheumy, these are all related to lupus, at least in part. Lupus causes the linings of the joints, tendons, bursas, etc. to become inflamed much more easily than in a 'normal' person. Because of lupus, the inflammation doesn't respond easily to conventional treatment with medicine, physical therapy, etc. Since it is very difficult to get the inflammation under control when a patient has lupus, they are much more likely to suffer nerve damage, tears, etc. that only surgery can resolve.

Even though my medical problems are many and varied, I can assure I'll take my problems over Cliff's any day! Chances are I will die with (not from) my medical problems. I am very lucky that the AIH was discovered before the damage progressed to cirrhosis. I have wonderful health insurance, love and support from my family, and finally good doctors. I feel very strongly about the fact that even the worst things are really blessings. The difficulties in my life are part of what has made me who I am and I kind of like who I am. Do I wish that doctors, medical problems, and health issues were not even part of my vocabulary? Sure I do! However, that is not the hand I was dealt. Probably the worst part is knowing how much worry I cause my family (especially my daughter since she is my heart and I soooo do not think that at 21 she should have to give her mother's health a second thought). Also, when I allow myself to think about what the future may hold for my daughter, it is terrifying. However, I also believe that her medical problems are a part of what has made her the remarkable young woman that she is. She has a tremendous amount of love and compassion for all people. She would not be who she is today if not for the difficulties she has faced and I definitely think she is quite a remarkable young woman. (I may be just a tiny bit biased!)

Anyway, we all have our crosses to bear in life and to be honest, mine don't seem to be nearly as heavy as what many in this group must deal with. I'm not trying to say that I can always be so chipper. I have my down days just like everyone but mostly it is a matter of perspective and attitude. Instead of asking "Why me?", I ask, "Why not me?" How dare I think for one minute that I am above the next one in terms of problems, pain, and suffering? Should I think that the innocent newborn baby of one of my coworkers who was born with cancer is more deserving of pain and suffering than me? I honestly have no answers as to why some people have to deal with what may seem to be more than their fair share of hardships, but that is just how life is. We must take the good with the bad and then somehow try to make the best of it. I do know that in my case, I have learned more and grown more from the hard times than I ever could have from the easy times. Do I sometimes wish that I could go back to the time before I got sick again last July when I felt I was on top of the world? Sure I do! My career was invigorating, exciting, and the money was sure nice! Only a month prior to getting sick, my husband and I had celebrated our 12th wedding anniversary with a scuba diving trip in Cozumel, Mexico. I had lost almost 80 lbs thanks to weight loss surgery. I no longer had the burden of feeling guilty about what I ate and being overweight. Scuba diving and just life in general was much easier with 80 lbs gone. My stepdaughter had just graduated high school and was soon to begin college. I'm not trying to toot my horn too loudly but her graduating on time and going to college was largely due to the fact that she had finally chosen to live with my husband and me. Prior to her senior year of high school, she had not had a year when she passed every class since she was in the 4th grade. She had a horrible home environment with her mother that no child should ever have to live through and frankly, if she had not come to live with us, I doubt very seriously she would have ever graduated. I'm not trying to take all the credit because she is a remarkable kid (in part because of the difficult life she lived with her mother and younger half sisters). However, it was because she saw the difference that education and working hard could make in your life that she chose to do what she had to do and leave her mother and younger sisters and come to live with us. Believe me, it was not an easy year for any of us. Her mother, grandmother, and even her sisters made her feel as if she were the most terrible person in the world for abandoning them. Despite the fact that she is a great kid, it was harder than I thought it would be to have her living with us full time. My husband and I had just gotten used to being empty nesters and we were enjoying it. He loved that he could walk through the house in just his undershorts or with nothing on at all! It was so nice that the guest bedroom and bathroom stayed spotless. No bathroom counter cluttered with all that teenage girl paraphanalia! It was hard for me because I couldn't just yell and scream at my stepdaughter when I was upset with her the way I could with Nikki. It was a year of learning, changes, and adjustment for all of us. Not to mention that it put a damper in our financial plans. Believe me, child support is much cheaper than actually raising the child yourself! As everyone knows, teens are not cheap! However, I wouldn't change a minute of it, but I do have to admit that I am happy to have my house back and be an empty nester again!

At the time I got sick, my own daughter, Nikki, was also fast becoming a young woman more remarkable than even my wildest dreams. She was engaged (and still is) to the most awesome young man who I know will be a wonderful husband, father, and provider. College was (and still is) going well for her. Life was quite grand! My husband and I had obviously done something right to have such remarkable daughters. It was so wonderful to see them thriving, so full of life and enthusiasm for their futures. We had recovered financially from the extra expenses of the lawyers, car, insurance, etc. associated with my stepdaughter coming to live with us. ly, we were on top of the world. We planned to help both the girls through college, pay our share of my daughter's wedding (and stepdaughter's when the time comes). We planned to put our house on the market just after my daughter's wedding in May 2004 and buy a larger, newer house that would cut down on my drive to work. We planned to take at least a week vacation to Mexico or somewhere scuba diving every year. We had big plans to ensure that we would be financially stable in our retirement. I planned to work until about age 60 (another 19 years). I figured that after retirement I would supplement our income with consulting work, which would also allow me to keep my brain active. We had it all worked out. Yeah, I had lupus, but it seemed to be in total remission. Yes, I'd had a rough year with pancreatitis in 2000, but I'd gone about 18 months without any major problems and my GI doc had just given me the all clear. He said the pancreatitis attacks had just been some kind of fluke and I'd never have another one. (Never lasted about 3 months or maybe less!) I had been doing a tremendous amount of business travel. Pretty much gone two weeks and home two weeks for the previous year. I was on my last scheduled business trip for a while. I was looking forward to getting to be home and in the office more. I had grand plans for what I was going to accomplish in the office. We were in the middle of a major system redesign and I had felt that I had neglected much of the details because of being out of the office so much. I was finally going to have time in the office to pay attention to all the tiny details that were so important in working out the bugs of the new system. I was excited about the possibilties and my programmers and co-workers were looking forward to having my brain more available to work out all the bugs.

Then, life happened! I ended up in the hospital with acute pancreatitis while about 600-700 miles from home. Talk abut causing some excitement! My mother and husband were having a stroke. My bosses, co-workers, and the people I worked with on my trip were worried sick about me. I was fine! I was sufficiently drugged and comfortable! It was everyone else that was going crazy worrying about me! My wonderful hubby flew to Virginia despite my telling him that I was absolutely fine. It's a darn good thing he did because there was no way I could have even managed to get my luggage and laptop computer home. I was incredibly weak but didn't know it until I tried to manage on my own. That was the beginning of a year where doctors and hospitals were the primary focus in my life. I didn't work a full week from the time I got sick in Jul 02 until my disability retirement was approved in Mar 03. My family, bosses, co-workers were all wonderful throughout the ordeal. My illness caused hardship for all but no one ever complained. I was treated with such kindness and compassion that even thinking about it brings tears to my eyes. I know that I did nothing to deserve all the kindness I was shown. When it came to the point that my husband and I realized that working full time was really no longer in my best interest or in the best interest of my employers, my wonderful husband did not bat an eye at the major loss of income this would mean for us. He simply said, "Money doesn't matter. All that matters to me is you." I would like to think that if he were the one who had been sick I could handle things with as much love and compassion as he has but in reality, I'm not so sure I could. His world has been turned upside down yet his only concern is me. Talk about feeling humbled! I have no doubt that this has been much harder on him than it has been on me. When I am in the hospital being kept comfortable with drugs, he is left to carry on. He is the one who has to worry about me, worry about whether things will continue to get worse or if I'll finally get at least some part of my life back. He's the one who has to worry whether or not I'm overdoing it and am going to land back in the hospital. He is the one who has to spend countless nights in the ER with a wife puking her guts out and begging for pain medicine while the doctors often just act as though I am just a drug addict. I could go on and on but I have the utmost respect for those of you who are the care takers. I promise you that you are true saints!

Boy, I have really gotten off on a tangent. During the middle of writing all this I had a major episode of pain that I thought might send me back to the ER. Thankfully, phenergan and pain medicine kicked in and writing this helped to take my mind off the pain somewhat. So, if this seems like the ramblings of someone on drugs, that is exactly what it is! However, I am thankful that once again the drugs have allowed me to avoid the hospital, at least for now!

W

[Guest guest]

,

I know your ramblings were to Gaynel but I enjoyed your story immensely, it was well written and I think captured the chaos that all these medical issues bring to our lives. I never realized you were so young (my math 60-19 makes you 41). I'm such an old lady at 49! Your positive attitude is amazing and you are fortunate to have such a wonderful support system!

Thanks for sharing.

Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Wednesday, August 20, 2003 12:23 PM Subject: Re: [ ] ramblings

Gaynel,

Sorry - a rheumy is a rheumatologist - they specialize in dealing with arthritis of all kinds - so the rheumy is the specialist that deals with my lupus. I guess the reason lupus falls in the rheumy category is because it so often causes joint pain and inflammation. With lupus, you often have other specialists involved if lupus decides to attack the organs. Most often lupus chooses to attack the kidneys so you would also be under the care of a kidney doc (nephrologist). According to my internal med doc, if you can have a total understanding of lupus and all the things it can do then you have got medicine licked! Lupus is a very tricky disease and there really is no end to the things that it can do/cause. It is often very difficult to determine whether or not lupus is the cause of various problems. Also, it may not even really matter whether or not lupus is the cause since with lupus, you basically treat the various symptoms. It seems you often have three different mind sets when it comes to lupus. 1. Lupus is responsible for every single ache, pain, medical problem, etc. in any patient who has lupus. 2. Even though the patient has all sorts of strange medical problems, lupus has absolutely nothing to do with any of them. 3. The truth is somewhere in the middle. the patient has lupus and lupus is probably responsible for many of the strange things the patient has going on but lupus may or may not be responsible for everything.

My internal med doc and my rheumy seem to follow #3, which is, in my opinion, the most logical. The truth is we will probably never really know for sure exactly what all lupus did/did not cause and I'm not so sure it even matters. Mostly I find it very interesting. The previous rheumy whose care I was under for almost 6 years was of the mindset #2. Yeah, I have lupus, but lupus didn't have anything at all to do with any of my problems. It had nothing to do with the fact that I had all these joint problems that led to numerous surgeries. I've had 3 shoulder surgeries, surgery on the ulnar nerve in my elbow, surgery on the damaged bursa of my left hip, surgery for a torn cartilage in my right knee. According to my current rheumy, these are all related to lupus, at least in part. Lupus causes the linings of the joints, tendons, bursas, etc. to become inflamed much more easily than in a 'normal' person. Because of lupus, the inflammation doesn't respond easily to conventional treatment with medicine, physical therapy, etc. Since it is very difficult to get the inflammation under control when a patient has lupus, they are much more likely to suffer nerve damage, tears, etc. that only surgery can resolve.

Even though my medical problems are many and varied, I can assure I'll take my problems over Cliff's any day! Chances are I will die with (not from) my medical problems. I am very lucky that the AIH was discovered before the damage progressed to cirrhosis. I have wonderful health insurance, love and support from my family, and finally good doctors. I feel very strongly about the fact that even the worst things are really blessings. The difficulties in my life are part of what has made me who I am and I kind of like who I am. Do I wish that doctors, medical problems, and health issues were not even part of my vocabulary? Sure I do! However, that is not the hand I was dealt. Probably the worst part is knowing how much worry I cause my family (especially my daughter since she is my heart and I soooo do not think that at 21 she should have to give her mother's health a second thought). Also, when I allow myself to think about what the future may hold for my daughter, it is terrifying. However, I also believe that her medical problems are a part of what has made her the remarkable young woman that she is. She has a tremendous amount of love and compassion for all people. She would not be who she is today if not for the difficulties she has faced and I definitely think she is quite a remarkable young woman. (I may be just a tiny bit biased!)

Anyway, we all have our crosses to bear in life and to be honest, mine don't seem to be nearly as heavy as what many in this group must deal with. I'm not trying to say that I can always be so chipper. I have my down days just like everyone but mostly it is a matter of perspective and attitude. Instead of asking "Why me?", I ask, "Why not me?" How dare I think for one minute that I am above the next one in terms of problems, pain, and suffering? Should I think that the innocent newborn baby of one of my coworkers who was born with cancer is more deserving of pain and suffering than me? I honestly have no answers as to why some people have to deal with what may seem to be more than their fair share of hardships, but that is just how life is. We must take the good with the bad and then somehow try to make the best of it. I do know that in my case, I have learned more and grown more from the hard times than I ever could have from the easy times. Do I sometimes wish that I could go back to the time before I got sick again last July when I felt I was on top of the world? Sure I do! My career was invigorating, exciting, and the money was sure nice! Only a month prior to getting sick, my husband and I had celebrated our 12th wedding anniversary with a scuba diving trip in Cozumel, Mexico. I had lost almost 80 lbs thanks to weight loss surgery. I no longer had the burden of feeling guilty about what I ate and being overweight. Scuba diving and just life in general was much easier with 80 lbs gone. My stepdaughter had just graduated high school and was soon to begin college. I'm not trying to toot my horn too loudly but her graduating on time and going to college was largely due to the fact that she had finally chosen to live with my husband and me. Prior to her senior year of high school, she had not had a year when she passed every class since she was in the 4th grade. She had a horrible home environment with her mother that no child should ever have to live through and frankly, if she had not come to live with us, I doubt very seriously she would have ever graduated. I'm not trying to take all the credit because she is a remarkable kid (in part because of the difficult life she lived with her mother and younger half sisters). However, it was because she saw the difference that education and working hard could make in your life that she chose to do what she had to do and leave her mother and younger sisters and come to live with us. Believe me, it was not an easy year for any of us. Her mother, grandmother, and even her sisters made her feel as if she were the most terrible person in the world for abandoning them. Despite the fact that she is a great kid, it was harder than I thought it would be to have her living with us full time. My husband and I had just gotten used to being empty nesters and we were enjoying it. He loved that he could walk through the house in just his undershorts or with nothing on at all! It was so nice that the guest bedroom and bathroom stayed spotless. No bathroom counter cluttered with all that teenage girl paraphanalia! It was hard for me because I couldn't just yell and scream at my stepdaughter when I was upset with her the way I could with Nikki. It was a year of learning, changes, and adjustment for all of us. Not to mention that it put a damper in our financial plans. Believe me, child support is much cheaper than actually raising the child yourself! As everyone knows, teens are not cheap! However, I wouldn't change a minute of it, but I do have to admit that I am happy to have my house back and be an empty nester again!

At the time I got sick, my own daughter, Nikki, was also fast becoming a young woman more remarkable than even my wildest dreams. She was engaged (and still is) to the most awesome young man who I know will be a wonderful husband, father, and provider. College was (and still is) going well for her. Life was quite grand! My husband and I had obviously done something right to have such remarkable daughters. It was so wonderful to see them thriving, so full of life and enthusiasm for their futures. We had recovered financially from the extra expenses of the lawyers, car, insurance, etc. associated with my stepdaughter coming to live with us. ly, we were on top of the world. We planned to help both the girls through college, pay our share of my daughter's wedding (and stepdaughter's when the time comes). We planned to put our house on the market just after my daughter's wedding in May 2004 and buy a larger, newer house that would cut down on my drive to work. We planned to take at least a week vacation to Mexico or somewhere scuba diving every year. We had big plans to ensure that we would be financially stable in our retirement. I planned to work until about age 60 (another 19 years). I figured that after retirement I would supplement our income with consulting work, which would also allow me to keep my brain active. We had it all worked out. Yeah, I had lupus, but it seemed to be in total remission. Yes, I'd had a rough year with pancreatitis in 2000, but I'd gone about 18 months without any major problems and my GI doc had just given me the all clear. He said the pancreatitis attacks had just been some kind of fluke and I'd never have another one. (Never lasted about 3 months or maybe less!) I had been doing a tremendous amount of business travel. Pretty much gone two weeks and home two weeks for the previous year. I was on my last scheduled business trip for a while. I was looking forward to getting to be home and in the office more. I had grand plans for what I was going to accomplish in the office. We were in the middle of a major system redesign and I had felt that I had neglected much of the details because of being out of the office so much. I was finally going to have time in the office to pay attention to all the tiny details that were so important in working out the bugs of the new system. I was excited about the possibilties and my programmers and co-workers were looking forward to having my brain more available to work out all the bugs.

Then, life happened! I ended up in the hospital with acute pancreatitis while about 600-700 miles from home. Talk abut causing some excitement! My mother and husband were having a stroke. My bosses, co-workers, and the people I worked with on my trip were worried sick about me. I was fine! I was sufficiently drugged and comfortable! It was everyone else that was going crazy worrying about me! My wonderful hubby flew to Virginia despite my telling him that I was absolutely fine. It's a darn good thing he did because there was no way I could have even managed to get my luggage and laptop computer home. I was incredibly weak but didn't know it until I tried to manage on my own. That was the beginning of a year where doctors and hospitals were the primary focus in my life. I didn't work a full week from the time I got sick in Jul 02 until my disability retirement was approved in Mar 03. My family, bosses, co-workers were all wonderful throughout the ordeal. My illness caused hardship for all but no one ever complained. I was treated with such kindness and compassion that even thinking about it brings tears to my eyes. I know that I did nothing to deserve all the kindness I was shown. When it came to the point that my husband and I realized that working full time was really no longer in my best interest or in the best interest of my employers, my wonderful husband did not bat an eye at the major loss of income this would mean for us. He simply said, "Money doesn't matter. All that matters to me is you." I would like to think that if he were the one who had been sick I could handle things with as much love and compassion as he has but in reality, I'm not so sure I could. His world has been turned upside down yet his only concern is me. Talk about feeling humbled! I have no doubt that this has been much harder on him than it has been on me. When I am in the hospital being kept comfortable with drugs, he is left to carry on. He is the one who has to worry about me, worry about whether things will continue to get worse or if I'll finally get at least some part of my life back. He's the one who has to worry whether or not I'm overdoing it and am going to land back in the hospital. He is the one who has to spend countless nights in the ER with a wife puking her guts out and begging for pain medicine while the doctors often just act as though I am just a drug addict. I could go on and on but I have the utmost respect for those of you who are the care takers. I promise you that you are true saints!

Boy, I have really gotten off on a tangent. During the middle of writing all this I had a major episode of pain that I thought might send me back to the ER. Thankfully, phenergan and pain medicine kicked in and writing this helped to take my mind off the pain somewhat. So, if this seems like the ramblings of someone on drugs, that is exactly what it is! However, I am thankful that once again the drugs have allowed me to avoid the hospital, at least for now!

W

[Guest guest]

glad you are home and didn't have to stay in the hospital. I bet being home is a lot more comfortable.

Hope you feel better soon.

the WV hillbilly

[Guest guest]

Patty,

thanks. Actually, I was 41 when I got sick last year, but am now 42. Not a lot of difference between 42 and 49, though! I think you and I both have a lot of living left to do. Glad you enjoyed my ramblings!

I'm back from the ER and feeling a bit better. My pancreas enzymes were normal and only one of my liver enzymes was slightly elevated, so they didn't keep me. Just gave me IV fluids, drugs, and sent me home. Told me to stick with liquids for the next two days and come back if I got worse. I think mostly I just kind of panicked when the pain got so bad this morning. Since I know the panc enzymes are normal, I'm just going to take it easy and try to get back to normal very slowly.

W

[Guest guest]

brenda,

Thanks. I'm home again. I've had liquids and popsicles and thye are doing okay so far.

W