This is so important to all of us that have Chiari Malformation. A Bill has been submitted by a Congressman in Pa. to designate every September as Chiari Awareness Month. The vote is in January.
There needs to be 100 Co Sponsor's to the Bill.....So we need YOU to call your Congressman and ask that he/she support House Res. 1422.
If this passes it will put us out in front! Doctors will have no choice but to treat those suffering with better care and STOP telling us that it is all in our heads!! I am hoping that it will get the disease more programs of genetic testing, a uniform standard of testing and most important the young doctors being taught this in medical school.
To read this Bill, I have created a quick link under Awareness.....House Res 1422. To help spread this to friends and family, go to www.thomas.gov search House Res 1422.
It is my hopes to soon see Purple magnet Ribbons on the back of vehicles all across America! Please help in supporting all of us that have Chiari, there are more of us out there then we all think are........
Friday, November 21, 2008
Saturday, November 15, 2008
5 week post op appointment with Dr Heilman
I went to see my wonderful surgeon in Boston. He is as I am very happy about all the symptoms that have gone....however he does caution that its not set in stone and I still need to wait wait wait... I love him! He told me I could come down every day and tell him how good I feel!
During the exam I asked him to check a lump on my neck. Swollen Lymph Nodes! Now I have several that are swollen. I had a nasty cold about 2 weeks ago, plus the steroids lowered my immune system. He told me it could be a couple more weeks of this. I have no fever but do get tired easy....so I rest and take extra Vit. C and Echinacea. Oh the chills and night sweats that I have had for a week have been horrible. Thought I was going threw menopause. He told me NO...just my body working overtime on healing my head and brain.
I would have thought that after 5 weeks recovery and doing so well he would have told me I could return to normal house duties or go back to work. NO NO NO.....he has ordered 6 more weeks. Still no lifting, bending over, shopping by myself. I can wash dishes, make my bed and drive around town. Weird he asked about my trunk in my car, or rather he made mention NOT TO USE IT! Again can I say how I love the care he gives!, details like that may have slipped past others.
I told him I was taking NO medications that he sent me home with.....no more muscle relaxers, no Tylenol, plus I am over 1 week off the Florinef for low blood pressure. He was very glad about this. Wants me to go back to the NL that did my tilt test and have it done again to make sure about the blood pressure. This will be good for future studies as well! So I will. I am also over 2 weeks now for NO sleeping medication, I will ask same NL about the Apnea ending as well!
The burning pins and needles has return in my right leg, not the foot or arm, just the leg where my tissue biopsy was done. Not constant and not as bad as it was before surgery. He told me this is why I should not count on anything till the body fully heals.
My scalp is very very slowly getting normal feeling back on the right side. It is working from the bottom upwards. He also told me that because this was the really damaged side it may take a long time to totally, if ever resolve. I am OK with it. I did go to the hairdresser, had to have my hair length fixed....was really shaved uneven. That hurt the scalp a bit, I did go with fresh washed hair as to not put my head in the sink........I will NEVER do that EVER again, been there done that. No one with CM should EVER do that!
My brain has been getting stronger everyday. Memory, planning, directions have all been improving! I now feel OK to deal with finances. Have not messed up the household money....this is a real big improvement, I have for over 20 years handled paying all creditors. So when ever I messed up the banking hubby knew something was wrong last summer. Mind you it's not that much money however, I do manage it as to not go negative.
My appetite has returned finally to 100% normal. I am not eating all the time, back to 3 meals a day. I have cut way way back on caffeine, amazing how before surgery I NEEDED caffeine to get me threw the day, now if I have to much my heart races and I feel jittery! Again Dr Heilman said that was a very good sign surgery has worked!
So now I can start to plan for the holidays. With my wonderful daughter who has given up her schooling to help me.....we will plan together! 20 people for Thanksgiving which is right around the corner and then Christmas with all the sewing and decorating! I am truly blessed and so excited about this holiday season! Even with less money I know it will be the best ever!!!
During the exam I asked him to check a lump on my neck. Swollen Lymph Nodes! Now I have several that are swollen. I had a nasty cold about 2 weeks ago, plus the steroids lowered my immune system. He told me it could be a couple more weeks of this. I have no fever but do get tired easy....so I rest and take extra Vit. C and Echinacea. Oh the chills and night sweats that I have had for a week have been horrible. Thought I was going threw menopause. He told me NO...just my body working overtime on healing my head and brain.
I would have thought that after 5 weeks recovery and doing so well he would have told me I could return to normal house duties or go back to work. NO NO NO.....he has ordered 6 more weeks. Still no lifting, bending over, shopping by myself. I can wash dishes, make my bed and drive around town. Weird he asked about my trunk in my car, or rather he made mention NOT TO USE IT! Again can I say how I love the care he gives!, details like that may have slipped past others.
I told him I was taking NO medications that he sent me home with.....no more muscle relaxers, no Tylenol, plus I am over 1 week off the Florinef for low blood pressure. He was very glad about this. Wants me to go back to the NL that did my tilt test and have it done again to make sure about the blood pressure. This will be good for future studies as well! So I will. I am also over 2 weeks now for NO sleeping medication, I will ask same NL about the Apnea ending as well!
The burning pins and needles has return in my right leg, not the foot or arm, just the leg where my tissue biopsy was done. Not constant and not as bad as it was before surgery. He told me this is why I should not count on anything till the body fully heals.
My scalp is very very slowly getting normal feeling back on the right side. It is working from the bottom upwards. He also told me that because this was the really damaged side it may take a long time to totally, if ever resolve. I am OK with it. I did go to the hairdresser, had to have my hair length fixed....was really shaved uneven. That hurt the scalp a bit, I did go with fresh washed hair as to not put my head in the sink........I will NEVER do that EVER again, been there done that. No one with CM should EVER do that!
My brain has been getting stronger everyday. Memory, planning, directions have all been improving! I now feel OK to deal with finances. Have not messed up the household money....this is a real big improvement, I have for over 20 years handled paying all creditors. So when ever I messed up the banking hubby knew something was wrong last summer. Mind you it's not that much money however, I do manage it as to not go negative.
My appetite has returned finally to 100% normal. I am not eating all the time, back to 3 meals a day. I have cut way way back on caffeine, amazing how before surgery I NEEDED caffeine to get me threw the day, now if I have to much my heart races and I feel jittery! Again Dr Heilman said that was a very good sign surgery has worked!
So now I can start to plan for the holidays. With my wonderful daughter who has given up her schooling to help me.....we will plan together! 20 people for Thanksgiving which is right around the corner and then Christmas with all the sewing and decorating! I am truly blessed and so excited about this holiday season! Even with less money I know it will be the best ever!!!
Subscribe to:
Posts (Atom)
