Before I continue, I need to throw in some tidbits. First and foremost my son Brandon said he would never say he ever participated in a Richard Simmons tape, :) he's too funny. Also before you have a spinal tap to confirm or rule out MS, you have an MRI on your brain.
Let me see if I can explain what Multiple Sclerosis (MS) is - each individual nerve is covered in what is called a sheath. I visualize it to be like a little rubber tube around it to keep it warm, and I have no idea where I got that visual. Each of these warm covered nerves receive the brains communications when you want to do something like bend your finger, use a muscle, raise your arm, bend over. Things people don't even think about when they are doing them.
Because I have been lucky enough to be chosen to have MS, my immune system attacks my sheaths. Boy, if I had me a little gatlin gun in there. . . Gads, I've got all these cold little nerves in there with no sheaths! I'm sorry guys! And these days it freezing, how awful for them! Anyway, when I send a message to use something on my right side, there is no sheath around that nerve to receive that message so it doesn't do what I want it to do. The sheath has been destroyed. At these point, that can not come back. When that happens, it causes lesions on my brain and that is what is detected in an MRI. I always joked about having brain damage, now its for real. While people with MS do have lesions on their brains, lesions detected from an MRI can be other things also. That is why the need for a spinal tap to confirm it. Something in my spinal fluid said "ha ha she's got it."
So once confirmed, its like where do we go from here? While many of the symptoms are the same for MS, it is also true that so many symptoms are different. That is one of the reasons it is called
"Multiple" Sclerosis. No two people manifest the disease in the same way. Since it is a progressive disease with no cure, they need to control it. There are several different drugs out there that can keep it at bay . . . for most people. The first choice I was given was Avonex, which is an injectable administered with a long needle, once a week and you can have flu symptoms for a day or two and then it goes away. My second choice was Beta Seron, which is an injection that ##&***^^^^##^**. I didn't hear much of that. I was still freaking at the idea that I had to GIVE MYSELF A SHOT, (I didn't follow in my Mom's footsteps to become a Nurse solely because I couldn't imagine giving someone a shot) with a long needle, once a week and get flu symptoms. Its like WHAT??? What kind of a choice is that? BUT, I have a very serious disease now and I have to pay attention. The next choice was Copaxone, an injection, with a small needle given daily. Its called subcutaneous because it is a shallow shot. So I thought - ok, ok, I can do this one - IF I HAVE TOO - yuck. Giving myself a shot every day? Thats just wrong. I haven't been back to my Doctor recently because she owes me two shots. The last time I was in there she gave me my flu shot and said she would wait on the Tetanus shot. I told her, I'm no fool, I'm not coming back. Dang, now I am also due for the pnuemonia shot. Ouch!
Back to the Copaxone. I accepted that choice of injection and went home to come to terms with all of this. To this day I don't think I've come "to terms" with it. I just take it one day at a time and remember . . . . . there is someone out there much worse off than I am.
Friday, January 14, 2011
Thursday, January 13, 2011
Continuing The Beginning . .
I had a appointment with my Nurse Practitioner this morning so I had to get up . . . . .early. Barry helped me get in the shower, I can do the rest myself, thank you, then he helped me get out. While I was drying off I ask him if he could set up my toothbrush. He said "Why, didn't you brush your teeth yesterday?" And I looked at him, puzzled and said "yeaaa . . ?" So you haven't done anything since then to dirty them, have you? Not knowing where this was going, I said "I went to sleep and woke up with morning breath," he said, "Ooh, I just thought you forgot to flush the toilet." I can imagine what my face looked like because he laughed! You don't hear Barry laugh as hard as he did, very often. It is a beautiful sound .. . .at my expense? He is the quiet but deadly type. That quiet humor that sneaks up on you when you least expect it. Brat. :)
Back to the beginning - after the spinal tap, you have to go home and lay down for 24-48 hours to prevent spinal tap headaches. Yea, right. I have four children and a foreign exchange student. I had the spinal tap on Friday morning and I laid flat until Sunday morning, but we wanted to take Rami (my son from Tunisia) to the beach. So we reclined my seat, in the van, as far back as it would go and took off for the Marin Headlands. Now I've never had a migraine headache, which I understand is severe, but spinal tap headaches have to be worse! BUT we did it! I have pictures! ( Boy, I've got to get back to scrapbooking, I finished 1997 about a year ago, but haven't felt up to it since. I would love to see those beach pictures).
Monday morning, Barry's off to work, drive all four kids to school and then head to San Leandro to take Rami to the location that the students will be meeting every day for their school. Now mind you, I am in amazing pain. The only thing I can think about is - get everyone dropped off so I can go home and lay down flat. I drop Rami off and head home. The pain in my head is now so severe I am sure my head is going to blow and I will cause an accident. It is blinding pain and I still have to get on the freeway and drive home. I called Barry at work and ask him to stay on the phone with me until I got home because I wasn't sure I was going to make it. Obviuosly, I did. I also remember having a doctors appointment for Tyler that week and my head was still hurting so bad that when we got to Kaiser, Pediatrics mind you, and they took one look at me and ran us in to an examing room so I could lay down until Doctor came and Tyler's exam was over.
If the pain doesn't go away after a few days they suggest you go back in for a blood patch to help get rid of the pain. A blood patch? What is that? They shoot blood in your spine. Another needle in my spine!?! I don't think so! By Wednesday I couldn't take the pain any longer and nothing was helping . . so I agreed to a Blood Patch. I couldn't believe it, but the pain was phenomonal, so I had to! Barry took me to Alta Bates Thursday morning. I got in to one of those cute little gowns (not) and waited anxiously for the Doctor to basically come and give me anothe Spinal Tap. After forever, the Doctor came in and said "How are you?" I wanted to smack him! I looked at him in amazement and said, nicely, "how am I? I am in severe pain and waiting for you to give me another Spinal Tap, which has to be one of the most painful procedures you can do to me and they are done with me awake!! How do you think I am?" He looked at me and said "You don't need a blood patch. If you can move around like you just did, you are on the mend. Get dressed and go home. The headaches should be gone in another day or two . . . unless you want me to do a blood patch?" I couldn't get dressed fast enough.
It was either 1998 or 1999 that I was diagnosed with Relapsing Remitting Multiple Sclerosis - 11 or 12 years ago.
Back to the beginning - after the spinal tap, you have to go home and lay down for 24-48 hours to prevent spinal tap headaches. Yea, right. I have four children and a foreign exchange student. I had the spinal tap on Friday morning and I laid flat until Sunday morning, but we wanted to take Rami (my son from Tunisia) to the beach. So we reclined my seat, in the van, as far back as it would go and took off for the Marin Headlands. Now I've never had a migraine headache, which I understand is severe, but spinal tap headaches have to be worse! BUT we did it! I have pictures! ( Boy, I've got to get back to scrapbooking, I finished 1997 about a year ago, but haven't felt up to it since. I would love to see those beach pictures).
Monday morning, Barry's off to work, drive all four kids to school and then head to San Leandro to take Rami to the location that the students will be meeting every day for their school. Now mind you, I am in amazing pain. The only thing I can think about is - get everyone dropped off so I can go home and lay down flat. I drop Rami off and head home. The pain in my head is now so severe I am sure my head is going to blow and I will cause an accident. It is blinding pain and I still have to get on the freeway and drive home. I called Barry at work and ask him to stay on the phone with me until I got home because I wasn't sure I was going to make it. Obviuosly, I did. I also remember having a doctors appointment for Tyler that week and my head was still hurting so bad that when we got to Kaiser, Pediatrics mind you, and they took one look at me and ran us in to an examing room so I could lay down until Doctor came and Tyler's exam was over.
If the pain doesn't go away after a few days they suggest you go back in for a blood patch to help get rid of the pain. A blood patch? What is that? They shoot blood in your spine. Another needle in my spine!?! I don't think so! By Wednesday I couldn't take the pain any longer and nothing was helping . . so I agreed to a Blood Patch. I couldn't believe it, but the pain was phenomonal, so I had to! Barry took me to Alta Bates Thursday morning. I got in to one of those cute little gowns (not) and waited anxiously for the Doctor to basically come and give me anothe Spinal Tap. After forever, the Doctor came in and said "How are you?" I wanted to smack him! I looked at him in amazement and said, nicely, "how am I? I am in severe pain and waiting for you to give me another Spinal Tap, which has to be one of the most painful procedures you can do to me and they are done with me awake!! How do you think I am?" He looked at me and said "You don't need a blood patch. If you can move around like you just did, you are on the mend. Get dressed and go home. The headaches should be gone in another day or two . . . unless you want me to do a blood patch?" I couldn't get dressed fast enough.
It was either 1998 or 1999 that I was diagnosed with Relapsing Remitting Multiple Sclerosis - 11 or 12 years ago.
Wednesday, January 12, 2011
In The Beginning
Brandon and Stephen had moved on to Montera Middle School. Tyler and Kristen were still at Montclair Elementary School. I was at the school all the time as President of the PTA. I thought I noticed my right leg dragging a little, walking across the playground to the parking lot. I thought it might be my imagination because it didn't happen consistently. After a while I noticed my right thigh was numb. It was such a bizarre feeling. Brandon came home from school one day and said "Hey Mom, I bet you have Multiple Sclerosis! We had an assembly at school today and it sounds like it." I poo-pooed it and told him he would no longer be attending assemblies at school.
Remember Richard Simmons, the Oldies Exercise Guru? I challenged Stephen and Brandon to do an exercise tape of his, with me, because I didn't feel they got enough exercise doing all their video games. They accepted the challenge thinking it would be easy. I honestly don't remember if the tape was easy for the boys, or not, or even if we finished the tape. I only remember that I could not raise my right leg very much and my right arm seemed a little weak also. I went for a physical and mentioned these possible weaknesses to her. She referred me to my Neurologist. After an examination, my Neurologist said I could possibly have Multiple Sclerosis but that I had to have a spinal tap to rule it out or confirm it. That was fun.
Remember Richard Simmons, the Oldies Exercise Guru? I challenged Stephen and Brandon to do an exercise tape of his, with me, because I didn't feel they got enough exercise doing all their video games. They accepted the challenge thinking it would be easy. I honestly don't remember if the tape was easy for the boys, or not, or even if we finished the tape. I only remember that I could not raise my right leg very much and my right arm seemed a little weak also. I went for a physical and mentioned these possible weaknesses to her. She referred me to my Neurologist. After an examination, my Neurologist said I could possibly have Multiple Sclerosis but that I had to have a spinal tap to rule it out or confirm it. That was fun.
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