Out Of The Shadows...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Joe, During my research, I looked the medical definition of "dystrophy" and was surprised, " defective and faulty nutrition, especially the muscular dystrophies". At a medical conference I asked the I asked the doctors who spoke about the definition and they did not know it. I asked a MDA coordinator who meets people at MDA clinics how many people have G.I issues and her answer was over 95%. You mentioned that you have crohn's. Have many people in the MG support group have G.I issues? Which was first the crohn's or the MC? Jon
Hey Joe!
I can't believe I missed all this till today!
I am so glad to see you back on the board with all that signifies!
The diagrams you posted took me back to my student days in med school, physiology at which i was spectacularly bad. However, I must have absorbed something because I understood and actually remembered parts of your in depth explanation of the reasons for, the development of, and the differences between the different muscle attacking diseases.
I found your explanation of hf the treatments fascinating because they didn't exist during my days treating kids with MD, although I am very sorry you had to get it to teach me about it.
What's happening with the AS currently? Please tell me that everything else has put that into remission?
Are you still sticking to the diet you told me about? Is it helping?
So sorry about moving to Oz. Still, lucky you got there and spent time with Gabes and have those memories. Priceless.
When I read about your daughter's wedding my response was "oh boy, we will see some LOVELY photos"! I, personally, can't wait to see them.
Is Nurse Nestle going with you?
So happy you are here, my friend!
I can't believe I missed all this till today!
I am so glad to see you back on the board with all that signifies!
The diagrams you posted took me back to my student days in med school, physiology at which i was spectacularly bad. However, I must have absorbed something because I understood and actually remembered parts of your in depth explanation of the reasons for, the development of, and the differences between the different muscle attacking diseases.
I found your explanation of hf the treatments fascinating because they didn't exist during my days treating kids with MD, although I am very sorry you had to get it to teach me about it.
What's happening with the AS currently? Please tell me that everything else has put that into remission?
Are you still sticking to the diet you told me about? Is it helping?
So sorry about moving to Oz. Still, lucky you got there and spent time with Gabes and have those memories. Priceless.
When I read about your daughter's wedding my response was "oh boy, we will see some LOVELY photos"! I, personally, can't wait to see them.
Is Nurse Nestle going with you?
So happy you are here, my friend!
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Joefnh
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- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Thanks again for all of the great responses and words of encouragement. I am simply humbled by all of your stories of what you deal with day to day and still have such great attitudes. I notice the same thing on the MD website I'm a member of, those that struggle the most seem to be the ones who are the most caring and supportive. I see that same quality here in all of you.
Thanks again for all your notes and encouragement, as I re-read these I'm simply humbled, amazed and appreciative for each and everyone of you.
Thank you
Jon about 4 years ago I was Dxd with both Crohns and MC at about the same time. I do suspect that due to the amount of damage from the Crohns that required a bowel resection that the Crohns started a few years before it was diagnosed and probably preceded the MC. Right after that I started imuran.
Many of the folks I have met with MG(MD) do have dietary sensitivities and many are GF, SF, it does seem there are GI issues within that group. A new friend I met with MG has also been trying to go GF and she is coming over this weekend for an example of GF foods and cooking. I'm also printing out my GF recipes and getting her a couple of good GF cookbooks. I know I have been strictly GF, SF and 99% DF for many years now and it does help.
Lesley the AS has been controlled through a series of spinal steroid injections, about once every 4 months. For now the AS is at the bottom of the list, but well controlled.
Here is a bit of an update from yesterday's doctors appointments.
I will be starting on the Rituximab and continuing the IVIG treatments as they really helps the MG, the MC and Crohns quite a bit. For the next IVIG series I will be going into the hospital to get a central access line, PICC line that will make the IVs much easier. The last series of IVIG wiped out the veins in my arm pretty good. A central line is a IV catheter that is threaded up to a major artery just outside the top of the heart so that any medication is readily diluted and transported around the body, with IV lines in the arms, the smaller veins can be irritated with these more caustic meds and collapse easily. The last 5 day series of IVIG I had a total of 15 IV restarts because of my poor veins.
Going forward we are scheduling me for surgery to get a central cardiac arterial line permanently implanted into my upper chest that will have a tube put in right next to the heart in the upper ascending aorta. This will be important as I am looking at staring a cancer med called Rituximab that does a good job with stubborn autoimmune conditions, it is a fairly irritating med to the veins so a central line makes a lot if sense.
Here is what the port looks like before it is implanted into the chest, it's about an inch across.
Here is a diagram of where it's placed and the tube is put near the heart
Here is what an implanted port looks like once it's implanted and healed
Overall it's a much better way of getting frequent IVs, a special needle just pushes through the skin into the port and your good to go... Those I have talked to that have one love it and would not get rid of it.
The goal with the next round of IVIG in mid September is to give me good strenght to attend my daughters wedding in late October. After my last round I felt a lot better. After that in December I'll have the surgery to get the port implanted and probably start the Rituximab just after the first of the year.
Thanks for all of your notes Lesley, Nestlé sends her best to licorice :-)
Take care
Thanks again for all your notes and encouragement, as I re-read these I'm simply humbled, amazed and appreciative for each and everyone of you.
Thank you
Jon about 4 years ago I was Dxd with both Crohns and MC at about the same time. I do suspect that due to the amount of damage from the Crohns that required a bowel resection that the Crohns started a few years before it was diagnosed and probably preceded the MC. Right after that I started imuran.
Many of the folks I have met with MG(MD) do have dietary sensitivities and many are GF, SF, it does seem there are GI issues within that group. A new friend I met with MG has also been trying to go GF and she is coming over this weekend for an example of GF foods and cooking. I'm also printing out my GF recipes and getting her a couple of good GF cookbooks. I know I have been strictly GF, SF and 99% DF for many years now and it does help.
Lesley the AS has been controlled through a series of spinal steroid injections, about once every 4 months. For now the AS is at the bottom of the list, but well controlled.
Here is a bit of an update from yesterday's doctors appointments.
I will be starting on the Rituximab and continuing the IVIG treatments as they really helps the MG, the MC and Crohns quite a bit. For the next IVIG series I will be going into the hospital to get a central access line, PICC line that will make the IVs much easier. The last series of IVIG wiped out the veins in my arm pretty good. A central line is a IV catheter that is threaded up to a major artery just outside the top of the heart so that any medication is readily diluted and transported around the body, with IV lines in the arms, the smaller veins can be irritated with these more caustic meds and collapse easily. The last 5 day series of IVIG I had a total of 15 IV restarts because of my poor veins.
Going forward we are scheduling me for surgery to get a central cardiac arterial line permanently implanted into my upper chest that will have a tube put in right next to the heart in the upper ascending aorta. This will be important as I am looking at staring a cancer med called Rituximab that does a good job with stubborn autoimmune conditions, it is a fairly irritating med to the veins so a central line makes a lot if sense.
Here is what the port looks like before it is implanted into the chest, it's about an inch across.
Here is a diagram of where it's placed and the tube is put near the heart
Here is what an implanted port looks like once it's implanted and healed
Overall it's a much better way of getting frequent IVs, a special needle just pushes through the skin into the port and your good to go... Those I have talked to that have one love it and would not get rid of it.
The goal with the next round of IVIG in mid September is to give me good strenght to attend my daughters wedding in late October. After my last round I felt a lot better. After that in December I'll have the surgery to get the port implanted and probably start the Rituximab just after the first of the year.
Thanks for all of your notes Lesley, Nestlé sends her best to licorice :-)
Take care
Joe
I think about you a lot, Joe. My closest person in the world, Jaki, died a few years ago of metastasizing breast cancer. She had past the 10 year mark, and 11 years. She was never told that when breast cancer comes back it does so in the spine and liver, not in the other breast. They missed it until she complained of back pain. She had one of those ports for her chemo.
Jaki had the same spirit as you have. Always cheerful, helpful to others, never complaining. Special people.
Licorice says "woof"!
Jaki had the same spirit as you have. Always cheerful, helpful to others, never complaining. Special people.
Licorice says "woof"!
Hi Joe,
I am just back from a two week vacation and catching up with the forum. I am so sorry that you have been dealing with so much, but am glad you got back on here for some TLC.
It's good that you had some counseling; we go to all kinds of lengths to take care of our bodies but sometimes taking care of our heads is as much, if not more, important. An objective party can help us see what, sometimes, our brains are too overwhelmed to find.
Wishing you the best with your treatments and your quest for stability in your health.
I am just back from a two week vacation and catching up with the forum. I am so sorry that you have been dealing with so much, but am glad you got back on here for some TLC.
It's good that you had some counseling; we go to all kinds of lengths to take care of our bodies but sometimes taking care of our heads is as much, if not more, important. An objective party can help us see what, sometimes, our brains are too overwhelmed to find.
Wishing you the best with your treatments and your quest for stability in your health.
Suze
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Joe,
I know how much you wanted to move to Oz. I am so sorry that it will not be possible for you. We put a lot of importance in this culture in having hopes and dreams as if the only alternative to having hopes and dreams was to have no hopes and no dreams and therefore be in despair. The only alternative I know of is to try to live in the moment, making each moment the best we possibly can. We can make plans for the future, nothing wrong with that, but if we stake our happiness on those plans, we are setting ourselves up for possible unhappiness. It's all a real juggling act. Seems to me you are doing a great job of juggling, trying to accept what is, figuring out how best to live with what you have been given. You may be humbled by all the well wishes here but I stand in awe of your kindness, fortitude and resolve. It's nice to have you back here.
Jean
I know how much you wanted to move to Oz. I am so sorry that it will not be possible for you. We put a lot of importance in this culture in having hopes and dreams as if the only alternative to having hopes and dreams was to have no hopes and no dreams and therefore be in despair. The only alternative I know of is to try to live in the moment, making each moment the best we possibly can. We can make plans for the future, nothing wrong with that, but if we stake our happiness on those plans, we are setting ourselves up for possible unhappiness. It's all a real juggling act. Seems to me you are doing a great job of juggling, trying to accept what is, figuring out how best to live with what you have been given. You may be humbled by all the well wishes here but I stand in awe of your kindness, fortitude and resolve. It's nice to have you back here.
Jean
Kari,Kari wrote:
I have a scroll by the Dalai Lama on my kitchen wall, that I look at every morning - I know it by heart from reading it over and over. Anyhow, thought I'd share it here:
"Every day, think as you wake up,
today I'm fortunate to have woken up.
I am alive, I have a precious human life.
I am not going to waste it,
I am going to use all my energies to develop myself
to expand my heart out to others,
to achieve enlightenment for the benefit of all beings.
I am going to have kind thoughts towards others,
I am not going to get angry, or think badly about others,
I am going to benefit others as much as I can."
.....His Holiness the 14th Dalai Lama
I have this quote written on an index card. I used to say it every morning before I got out of bed but I have gotten out of the habit. This is a good reminder to reinstate the practice. It is a good antidote to moans, groans and laziness.
Thanks for the reminder,
Jean
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Kari that is a great scroll isn't it, I can understand wanting to read that each morning. Jean I did print that out as well....certainly some wise words a good way to set our frame of reference for the upcoming day.
Jean while it may be a more recent adjustment on my part and strangely one of the good things that comes out of being sick like this is a better and more mature appreciation for the 'now' not being as concerned about tomorrow or as worried about yesterday.
It's funny, I think it was Gabes who about 3 years ago tried to tell me to live in the moment...of course I sat there quite confused and said of course I'm living in the moment, I have no choice, I'm alive this moment....totally lost on the concept. Probably not until the last 6 months has the true meaning of that phrase become real
For quite a while, actually the last 13 years, my dream has been to move to Oz and eventually retire there. At the moment that is not a realistic goal and I can put that aside Jean, I have made 14 trips to Oz over the years and have been to just about every major city and have made some great friends there. I have nothing to regret about that. Who knows at some point the MG may go into remission and I can make another trip there....I'll let that be a dream for a while.
Lesley it would too complicated to bring Nestlé to the wedding, although she did go dress shopping the other day with the hopes of going :-) I certainly will be taking lots of pictures and am looking forward to the day. Its on October 19 and is planned for an outdoor wedding at a very old and elegant vineyard in the western part of Virginia up in the rolling hills and mountains of that area. The foliage should about at peak for that area. There are backup plans to go indoors should the weather not cooperate. Have a great trip to Israel to see the kids Lesley, that's a long trip but it will be so worth it for the visit. I miss my trips to Israel for business, it is a wonderful place, I so enjoyed meeting the people there and immersing myself in the culture.
Suze your absolutely right, anytime we are under this type of chronic illness which results in stress, taking care of not only the body but the mind is very important. This is the first time that I have really dealt with depression and I am a bit surprised at how it can affect every part of our lives, it's key to be able to manage it. After talking with my doctor he mentioned one thing I did not realize, that is how just about anyone that is chronically ill or that deals with chronic pain will almost certainly end up dealing with some level of depression.
Ldubois7, Nestlé is a cutie and is a real cuddle bug...she is a bit older now, but that puppy picture is one of my favorites of her.
Here is a recent picture of Nestlé
Jean while it may be a more recent adjustment on my part and strangely one of the good things that comes out of being sick like this is a better and more mature appreciation for the 'now' not being as concerned about tomorrow or as worried about yesterday.
It's funny, I think it was Gabes who about 3 years ago tried to tell me to live in the moment...of course I sat there quite confused and said of course I'm living in the moment, I have no choice, I'm alive this moment....totally lost on the concept. Probably not until the last 6 months has the true meaning of that phrase become real
For quite a while, actually the last 13 years, my dream has been to move to Oz and eventually retire there. At the moment that is not a realistic goal and I can put that aside Jean, I have made 14 trips to Oz over the years and have been to just about every major city and have made some great friends there. I have nothing to regret about that. Who knows at some point the MG may go into remission and I can make another trip there....I'll let that be a dream for a while.
Lesley it would too complicated to bring Nestlé to the wedding, although she did go dress shopping the other day with the hopes of going :-) I certainly will be taking lots of pictures and am looking forward to the day. Its on October 19 and is planned for an outdoor wedding at a very old and elegant vineyard in the western part of Virginia up in the rolling hills and mountains of that area. The foliage should about at peak for that area. There are backup plans to go indoors should the weather not cooperate. Have a great trip to Israel to see the kids Lesley, that's a long trip but it will be so worth it for the visit. I miss my trips to Israel for business, it is a wonderful place, I so enjoyed meeting the people there and immersing myself in the culture.
Suze your absolutely right, anytime we are under this type of chronic illness which results in stress, taking care of not only the body but the mind is very important. This is the first time that I have really dealt with depression and I am a bit surprised at how it can affect every part of our lives, it's key to be able to manage it. After talking with my doctor he mentioned one thing I did not realize, that is how just about anyone that is chronically ill or that deals with chronic pain will almost certainly end up dealing with some level of depression.
Ldubois7, Nestlé is a cutie and is a real cuddle bug...she is a bit older now, but that puppy picture is one of my favorites of her.
Here is a recent picture of Nestlé
Joe
Joe and Lesley,
My eldest nephew recently returned from Israel after spending the summer there doing a photography internship. You can see his photographs here:
http://letzterphoto.wordpress.com/2013/ ... he-temple/
His brother, my youngest nephew (both my sister's children), just left for Israel for a year program. He just graduated from high school.
I have never been.
Shalom,
Jean
My eldest nephew recently returned from Israel after spending the summer there doing a photography internship. You can see his photographs here:
http://letzterphoto.wordpress.com/2013/ ... he-temple/
His brother, my youngest nephew (both my sister's children), just left for Israel for a year program. He just graduated from high school.
I have never been.
Shalom,
Jean
HI Joe,
I am also glad to see you back and am sorry to hear you are having more challenges. It's fortunate that you are close to such solid and cutting edge medical care because it certainly gives us hope to have a plan for treatment. I think your willingness to take Wellbutrin is very smart. As you know it allows for more dopamine production as opposed to other meds who affect serotonin more. Dopamine will help not only your mood but your pain tolerance and promotes a feeling of overall calm (or as close to it as we can get). I'm sure they told you to watch for side effects and if you start having random thoughts of suicide just know those are artificial and you'll want to call your doctor right away.
Thanks for sharing such a detailed account of your symptoms and your treatment. It will help others, if not now then in the future.
Take care and keep in touch-
Carol
I am also glad to see you back and am sorry to hear you are having more challenges. It's fortunate that you are close to such solid and cutting edge medical care because it certainly gives us hope to have a plan for treatment. I think your willingness to take Wellbutrin is very smart. As you know it allows for more dopamine production as opposed to other meds who affect serotonin more. Dopamine will help not only your mood but your pain tolerance and promotes a feeling of overall calm (or as close to it as we can get). I'm sure they told you to watch for side effects and if you start having random thoughts of suicide just know those are artificial and you'll want to call your doctor right away.
Thanks for sharing such a detailed account of your symptoms and your treatment. It will help others, if not now then in the future.
Take care and keep in touch-
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Jean, the photos are beautiful. I am not religious, very far from it.
Joe - you told me about your visits to Israel Fascinating!
I have to make arrangements for my trip. Last year was SO difficult. I need to take way more foodstuffs with me so that I don't get into trouble there. I never bounced back after the last trip.
I also have to decide whether to take Licorice with me, whether to stop in London and so many other things.
Joe, I am SO sure you will be able to visit Oz again one day. When you have something so wonderful to look forward to it;s easier to live in the moment. At least that's my experience.
Right now Adam is going through a depression, and I am working hard to keep him on the road forward. Too many incredibly stressful things happened at once, and he is having a hard time trying to pull himself out of it.
I wish he would do as you did, Joe and get himself some treatment. Once you come OUT of a depression you look back and realize how far down you were, and say "phew. I am so glad THAT'S over."
Nestle is so pretty! Who looks after her when you are away?
Joe - you told me about your visits to Israel Fascinating!
I have to make arrangements for my trip. Last year was SO difficult. I need to take way more foodstuffs with me so that I don't get into trouble there. I never bounced back after the last trip.
I also have to decide whether to take Licorice with me, whether to stop in London and so many other things.
Joe, I am SO sure you will be able to visit Oz again one day. When you have something so wonderful to look forward to it;s easier to live in the moment. At least that's my experience.
Right now Adam is going through a depression, and I am working hard to keep him on the road forward. Too many incredibly stressful things happened at once, and he is having a hard time trying to pull himself out of it.
I wish he would do as you did, Joe and get himself some treatment. Once you come OUT of a depression you look back and realize how far down you were, and say "phew. I am so glad THAT'S over."
Nestle is so pretty! Who looks after her when you are away?