I have been working countless hours with the Flowers4MS facebook page and with the fundraiser and I continue to not have time to think of myself and the things that I love. When I do something I like, it doesn’t happen very often since most of my time is spent working and spreading the word about CCSVI.
At one point during this month, I felt so sick that I called the cranial therapist and made an appointment before the two usual weeks had passed. With his help (I thank God for putting him on my path!) I was able to improve right away. He had found a problem with my hips which seem to move out of place when I do certain movements and he said that my head was overwhealmed with rushing thoughts. He could feel that I was feeling stressed and worried…I continue to have a lot of these feelings because I have to make a decision about my future with CCSVI and the road is not easy at all.
At one point during this month, I felt so sick that I called the cranial therapist and made an appointment before the two usual weeks had passed. With his help (I thank God for putting him on my path!) I was able to improve right away. He had found a problem with my hips which seem to move out of place when I do certain movements and he said that my head was overwhealmed with rushing thoughts. He could feel that I was feeling stressed and worried…I continue to have a lot of these feelings because I have to make a decision about my future with CCSVI and the road is not easy at all.
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My 18th Tysabri Infusion: Month of June, 2010
As soon as the medicine went into my body, I knew that something was different. I usually feel it going into me and in my head but this time, the sensation was a lot stronger than usual and the pain and soreness started from the very first moment.
I felt my throat close slightly and I felt my stomach closing more than usual. I didn’t feel like drinking (and this never happens!) and I knew that this infusion was going to be different from the others.
While I met with my friend Judy for lunch and I was able to enjoy my time with her and eat a nice salad (things change by the minute and my stomach felt somewhat ok then) once I got into the car and I started the 4 and a half hour ride back home, I started to feel the pain getting stronger and stronger. My neck, my back and my stomach started hurting more and the feeling of having something stuck along my esophagus came back and became stronger.
The day after the infusion, the pain continued to be present and, while I got mad again and I pushed myself out of bed to start my day and to exercise my abdominals (I get back at Tysabri by excercising a little while I am in pain) I continue to feel different than previous months. I feel like I am losing who I am and I am definetely losing my mind, my capability of thinking, learning, writing, storing information in my brain and be who I usually am…
The end of the month of June was a little scary for me. Toward the arrival of my menstrual period, I started having light pain on my right arm that, in a matter of hours, became so strong and so acute that I wasn’t able to bend my elbow any more without wanting to scream! I didn’t know where this came from and I was very confused again. Wasn’t this caused by me doing something wrong, by eating foods that I usually don’t eat (I had too much cheese and wheat, which I usually don’t eat) by not resting enough or this was simply caused by the arrival of my mentrual cycle?
(which has been known to give me plenty of problems since I was 12 years old).
The pain was so intense that I couldn’t bend the elbow or move my arm easily. It lasted about four days and it came and went shockingly fast! I didn’t know what to think!
After the elbow pain, when I was ready to go to Maine to celebrate Fouth of July (every year I chose a different location to see how different American cities celebrates this holiday) I started having the worst headeade: strong eletrical shocks would start in different areas of my head and they would propagate all over it, going to my left year, my mouth, my teeth and the left side of my face.
I was hurting so bad that I couldn’t hold my head up and the pressure was so extreme that I couldn’t think, speak or want to do anything but lie down!
I wasn’t able to leave on Friday like planned but I tried to leave the morning after, which I did even if continued to be in a lot of pain.
As you know, I don’t take any drugs (except Tysabri which is more than enough for me! and large amounts of Vitamin D) and I lived through everything…I am not expecting much understanding from this side of the world because I know that pain is not taken or accepted very well here…And I also know that many people take lots of drugs and they are in pain anyway! Anyway, I went in the car suffering quite a bit, I had to lay down for most of the ride up to Maine, which takes about 4 hours, and I rested a little once my husband and I got to the hotel.
I felt my throat close slightly and I felt my stomach closing more than usual. I didn’t feel like drinking (and this never happens!) and I knew that this infusion was going to be different from the others.
While I met with my friend Judy for lunch and I was able to enjoy my time with her and eat a nice salad (things change by the minute and my stomach felt somewhat ok then) once I got into the car and I started the 4 and a half hour ride back home, I started to feel the pain getting stronger and stronger. My neck, my back and my stomach started hurting more and the feeling of having something stuck along my esophagus came back and became stronger.
The day after the infusion, the pain continued to be present and, while I got mad again and I pushed myself out of bed to start my day and to exercise my abdominals (I get back at Tysabri by excercising a little while I am in pain) I continue to feel different than previous months. I feel like I am losing who I am and I am definetely losing my mind, my capability of thinking, learning, writing, storing information in my brain and be who I usually am…
The end of the month of June was a little scary for me. Toward the arrival of my menstrual period, I started having light pain on my right arm that, in a matter of hours, became so strong and so acute that I wasn’t able to bend my elbow any more without wanting to scream! I didn’t know where this came from and I was very confused again. Wasn’t this caused by me doing something wrong, by eating foods that I usually don’t eat (I had too much cheese and wheat, which I usually don’t eat) by not resting enough or this was simply caused by the arrival of my mentrual cycle?
(which has been known to give me plenty of problems since I was 12 years old).
The pain was so intense that I couldn’t bend the elbow or move my arm easily. It lasted about four days and it came and went shockingly fast! I didn’t know what to think!
After the elbow pain, when I was ready to go to Maine to celebrate Fouth of July (every year I chose a different location to see how different American cities celebrates this holiday) I started having the worst headeade: strong eletrical shocks would start in different areas of my head and they would propagate all over it, going to my left year, my mouth, my teeth and the left side of my face.
I was hurting so bad that I couldn’t hold my head up and the pressure was so extreme that I couldn’t think, speak or want to do anything but lie down!
I wasn’t able to leave on Friday like planned but I tried to leave the morning after, which I did even if continued to be in a lot of pain.
As you know, I don’t take any drugs (except Tysabri which is more than enough for me! and large amounts of Vitamin D) and I lived through everything…I am not expecting much understanding from this side of the world because I know that pain is not taken or accepted very well here…And I also know that many people take lots of drugs and they are in pain anyway! Anyway, I went in the car suffering quite a bit, I had to lay down for most of the ride up to Maine, which takes about 4 hours, and I rested a little once my husband and I got to the hotel.
TM