My last blog post was 12/04/2019 and it was two days before i had lymphatic bypass and lymph node transfer done at the University of Chicago. Many of you know the long story leading up to that but I have been getting a lot of people asking me how is it going?
I have to say i have been a bit disappointed. It was a hard surgery and for 4 weeks i wrapped my arm like i was a mummy and my arm was much much better in terms of volume. I could not wait to STOP wrapping and assumed that was the end of it. Get a sleeve and move on . NOPE
I have become an expert in Lymphedema and it is a bear of a problem that is so not understood.
Amazingly i have found two people here in the Grand Valley that have chosen to be experts in this field. I did not know they existed. At first i made a commitment to wear a compression sleeve for at least 6 months. It does not seem to do much but I wear it. I have spent about $1000 dollars in garments. Two sleeves for daytime and 1 for night time. I have been discouraged because once i stopped the enormous wrapping that did not allow me to wear clothes ( for 5 weeks). the swelling just seemed to return. It is better than it was but it is now where i hoped it would be
This disease is a beast. It is chronic and progressive. I am so grateful that my case is milder than many . Doctors do not know about it. Insurance companies do not know about it.
I have returned to full on exercise and i am grateful that i have strength and flexibility. My husband thinks it is improved but i am not convinced.
Today i met with a massage therapist who is very well versed in lymphedema and she gave me so much hope. Tonight it feels sooo much better. What i realize is the surgery was not a fix . It may help but i still have to maintain the practices of decompression and manual lymphatic massage. ugh.
It also is not just about fluid but about the inflammatory response that happens and I am learning the complexity of this disease. interestingly for the first time there is a medical treatment ( medicine) that is showing promise. mucinex (guaifenesin) of all things. I am not a person to take medications but i am starting it tonight because as i understand the trapped fluid becomes thick and gelatinous and will not move so this may thin it and help it move.
I am so appreciative for those that have reached out to see how I am doing. It has been a bit discouraging but what i Know is that there is not a cure but a movement in the right direction. I am committed now to doing this manual lymphatic massage therapy weekly for a while. Of course it is not covered by insurance but so it goes.
I am grateful that i have found a couple of local people who have chosen to be experts in this field. I am also grateful that I have full range of motion and strength of my arm and that I do not have this in my trunk or legs which many do. I am also thankful for all of the people here that have supported me and reached out asking for an update
No it was not a cure but a movement in the right direction and i realize the long term commitment i have to make , mucinex, sleeves. massage therapy and maybe future surgery, yoga and whatever may come. we will see...
This is an art site but ... it involves other important things too. xo
I have to say i have been a bit disappointed. It was a hard surgery and for 4 weeks i wrapped my arm like i was a mummy and my arm was much much better in terms of volume. I could not wait to STOP wrapping and assumed that was the end of it. Get a sleeve and move on . NOPE
I have become an expert in Lymphedema and it is a bear of a problem that is so not understood.
Amazingly i have found two people here in the Grand Valley that have chosen to be experts in this field. I did not know they existed. At first i made a commitment to wear a compression sleeve for at least 6 months. It does not seem to do much but I wear it. I have spent about $1000 dollars in garments. Two sleeves for daytime and 1 for night time. I have been discouraged because once i stopped the enormous wrapping that did not allow me to wear clothes ( for 5 weeks). the swelling just seemed to return. It is better than it was but it is now where i hoped it would be
This disease is a beast. It is chronic and progressive. I am so grateful that my case is milder than many . Doctors do not know about it. Insurance companies do not know about it.
I have returned to full on exercise and i am grateful that i have strength and flexibility. My husband thinks it is improved but i am not convinced.
Today i met with a massage therapist who is very well versed in lymphedema and she gave me so much hope. Tonight it feels sooo much better. What i realize is the surgery was not a fix . It may help but i still have to maintain the practices of decompression and manual lymphatic massage. ugh.
It also is not just about fluid but about the inflammatory response that happens and I am learning the complexity of this disease. interestingly for the first time there is a medical treatment ( medicine) that is showing promise. mucinex (guaifenesin) of all things. I am not a person to take medications but i am starting it tonight because as i understand the trapped fluid becomes thick and gelatinous and will not move so this may thin it and help it move.
I am so appreciative for those that have reached out to see how I am doing. It has been a bit discouraging but what i Know is that there is not a cure but a movement in the right direction. I am committed now to doing this manual lymphatic massage therapy weekly for a while. Of course it is not covered by insurance but so it goes.
I am grateful that i have found a couple of local people who have chosen to be experts in this field. I am also grateful that I have full range of motion and strength of my arm and that I do not have this in my trunk or legs which many do. I am also thankful for all of the people here that have supported me and reached out asking for an update
No it was not a cure but a movement in the right direction and i realize the long term commitment i have to make , mucinex, sleeves. massage therapy and maybe future surgery, yoga and whatever may come. we will see...
This is an art site but ... it involves other important things too. xo
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