And so the verdict yesterday from the specialist was that I do NOT have MS! Praise God!! This is great news for all of us. This has lifted a huge weight from my shoulders, now if the same weight would lift from my leg.....
My husband and I talked the whole way home about many things. I think we both had set ourselves up for this to be the answer because not one but two doctors had told me this! That's pretty amazing right? In fact when the specialist yesterday opened the chart he said that the doctors who had sent me did so because they said I have MS and wanted another opinion. I guess we walk a fine line.
The one thing that we kept discussing (my friends reading this will remember) is what about a medicine I took back in 03-04. LUPRON. Anyone who knows me will know that this drug sent everything into a spin. I was in the bed, shaking, sick, couldn't walk, couldn't function, could barely open my eyes. We were back and forth to the hospital numerous times and it was so bad at one point in 04 that they gave me an extra dose!! My mom thought I was going to die and I think my husband did too. I was on Morphine and pretty unaware of anything going on. I did finally start to get better, but had to use walking aids to get around. (Note: I may have some of this mixed up, I don't remember a lot of it) My oldest son was then about 2 1/2 or so. Finally after about 6-9 months of a time period I got to where I could walk on my own and after seeing Dr's who kept saying I was just fat and depressed..... I lost about 110lbs. In 2005 I became pregnant with the twins and in 2006 they were born 5 weeks early because my liver failed.
So what is Lupron you might be asking? Well I took it for Endometriosis, but it's a cancer drug. It's mostly given to men for Prostate cancer. My grandfather took it. We aren't 100% certain, but he possibly could have suffered some of the same ill side effects that I have now. He passed away last year from congestive heart failure and dementia. I wish I could have known if he truly did suffer from the Lupron. I do know though that there are thousands and thousands of people across the United States that have suffered from it. A few of them have died from taking it, some have had strokes, others are just like myself.
Why didn't I mention this before? Well there are two reasons. One is because early on we saw doctors and when we did mention it they seemed to shut down and didn't want to treat me once we mentioned the Lupron. My mom quickly determined that they thought we were seeking a lawsuit and wanted their help. No doctor anywhere is going to get involved in that. The second reason is because in the last year or so is when I began to be told that they thought I had MS. I didn't want to mention the Lupron then and throw another loop into the mix and I didn't want to scare off anymore doctors that were already beginning to help. Do you see what a mess this is?
I took the Lupron because the Endometriosis was so bad and because after my first son I desperately wanted more children. They told me we would never have anymore. I was determined, as I often am. As you already know, I have twins too!
Thursday, August 13, 2009
Tuesday, August 11, 2009
Kindness
I've experienced many acts of kindness today and they all have touched my heart. To start with I had a very sweet email from my mom this morning and I'm sure she knew that I would still be very nervous today as my appointment approaches tomorrow. She then came this morning and helped me out and took my laundry since the incident with the washer and dryer happened.....grr.
I had several nice messages on my Facebook and words of encouragement. These all touched my heart and made me smile. It's nice to have friends! My husband was very sweet at lunch today and I didn't have to ask him to do certain things.... hmmm.....
Then at lunch my oldest son came in with some coins in his hand and told me that he wanted me to have them. I told him that was sweet but to keep his money. He walked off and I fixed my lunch and sat down. My mom ate with me and I had to excuse myself to go to the bathroom. I walked in my room and noticed on the table beside my bed that the coins were there, my son had gone in my room and put them beside my bed. When I came back out to the kitchen I called him. I asked him what he wanted Mom to do with the coins and he said he didn't know, but just to use them. So after some thought and debate we decided that I would use them towards my next hair cut. He was happy and I was touched by his kindness.
This afternoon, I had a very sweet email that brought tears to my eyes. I got a phone call from a friend just to check on me before my appointment tomorrow and I chatted with a friend online too. You never know what little acts of kindness may do for someone, today they went a long way for me!
I had several nice messages on my Facebook and words of encouragement. These all touched my heart and made me smile. It's nice to have friends! My husband was very sweet at lunch today and I didn't have to ask him to do certain things.... hmmm.....
Then at lunch my oldest son came in with some coins in his hand and told me that he wanted me to have them. I told him that was sweet but to keep his money. He walked off and I fixed my lunch and sat down. My mom ate with me and I had to excuse myself to go to the bathroom. I walked in my room and noticed on the table beside my bed that the coins were there, my son had gone in my room and put them beside my bed. When I came back out to the kitchen I called him. I asked him what he wanted Mom to do with the coins and he said he didn't know, but just to use them. So after some thought and debate we decided that I would use them towards my next hair cut. He was happy and I was touched by his kindness.
This afternoon, I had a very sweet email that brought tears to my eyes. I got a phone call from a friend just to check on me before my appointment tomorrow and I chatted with a friend online too. You never know what little acts of kindness may do for someone, today they went a long way for me!
Monday, August 10, 2009
Just so frustrated
Today is not a good day! It started out ok and I was just nervous that this is the week I go to Duke, but then it all went downhill. First I had to go through my twins closest so that I can make room for their new clothes. That turned out to be an adventure. Then I had to call the guy to come look at the washing machine because last night it wasn't washing it was just making this humming noise.
So the guy gets here and tells us that the motor is hot and it's leaking oil and the knob is loose and the timer is off. Oh my gosh can it get any worse because we just bought a refrigerator. I'm thinking we should have not bought that and gotten the washer and dryer instead. He said the dryer would probably only last another 6 months maybe because the knob on that is loose too. So he leaves and I am just in tears because I can't fathom how we will pay for this. I have no job (stay at home mom), not a lot of cash, we don't have credit cards, getting ready to have medical bills, etc.
Then my mother is here and of course I'm on edge. I'm on edge thinking about Duke, I'm looking at my dirty house that needs to be cleaned and wondering how I can do all that and the clothes that now need to be washed and no washer and almost no dryer and screaming kids and an 8 year old that suddenly got an attitude when asked to do something. So I'm throwing toys in the playroom and a ball hits her (a soft one!!) and she wants to know why I hit her..... I didn't mean to and I tell everyone to just get out and for her to go home and then I throw my daughter's camera in there too and she (my mom) has a fit. The camera is the Little Tykes camera and was made so that if it is thrown, dropped or whatever then it will basically not break, ever! My daughter has probably thrown that thing a million times already and it still works. But of course lets blame me for everything..... my house is just falling apart, my body is falling apart, it seems we can't get things together here. I'm not even sure if I applied for a job that anyone would ever hire me.... Hmmmmmm.
So now I'm wondering what the rest of the week would even be like. Makes me wonder what Wednesday will be like. Now that is scary!
So the guy gets here and tells us that the motor is hot and it's leaking oil and the knob is loose and the timer is off. Oh my gosh can it get any worse because we just bought a refrigerator. I'm thinking we should have not bought that and gotten the washer and dryer instead. He said the dryer would probably only last another 6 months maybe because the knob on that is loose too. So he leaves and I am just in tears because I can't fathom how we will pay for this. I have no job (stay at home mom), not a lot of cash, we don't have credit cards, getting ready to have medical bills, etc.
Then my mother is here and of course I'm on edge. I'm on edge thinking about Duke, I'm looking at my dirty house that needs to be cleaned and wondering how I can do all that and the clothes that now need to be washed and no washer and almost no dryer and screaming kids and an 8 year old that suddenly got an attitude when asked to do something. So I'm throwing toys in the playroom and a ball hits her (a soft one!!) and she wants to know why I hit her..... I didn't mean to and I tell everyone to just get out and for her to go home and then I throw my daughter's camera in there too and she (my mom) has a fit. The camera is the Little Tykes camera and was made so that if it is thrown, dropped or whatever then it will basically not break, ever! My daughter has probably thrown that thing a million times already and it still works. But of course lets blame me for everything..... my house is just falling apart, my body is falling apart, it seems we can't get things together here. I'm not even sure if I applied for a job that anyone would ever hire me.... Hmmmmmm.
So now I'm wondering what the rest of the week would even be like. Makes me wonder what Wednesday will be like. Now that is scary!
Wednesday, August 5, 2009
Getting Out
So I'm going to write about something slightly different today, Day 3. As I'm waiting patiently for the Duke visit I am itching every day to just get out and about. However, I can't just get in the car and drive around so it's hard to do that. I've come to know my children very well!!
For instance my oldest is extremely smart. He knows things that I never knew anyone knew. He loves to watch the History Channel and shows of that nature. He learns from them and he can soak up all of the knowledge that he gains. He can then repeat it all and tell you stories that he heard. He also loves art and music. He can sing and he can write songs. They are good too. I'm so impressed by his passion and how he expresses himself with his love for such things. He enjoys his little brother and sister but at the same time I can see that he is growing up and they are wearing on his nerves. The ages are really showing. He is getting older, more of a pre-teen and while they are sweet and he loves them, he wants his own space too. He likes to go to my mom and dad's house and enjoys the free time he gets there. He likes some video games, computer games, baseball, etc. He's just turning into a cool kid that I'm proud to know.
My second oldest who is a twin, but still he is older by 2 minutes has a quirky nature about him. You have to be able to handle him in any setting. He likes for things to be in order, neat and tidy and he likes his routine. He is my loving child, more so than the others. He will come up for no reason and just give you a kiss. He will apologize if he hurts you or hurts your feelings. He will talk in complete, functional sentences with very large vocabulary words. He is bright and he too knows things, but he is only 3 1/2 years old. I don't know where he learned these things because we didn't necessarily teach him. He can say the entire alphabet, and count to 20, he knows all his colors, but then he knows things like what kind of trucks are in the playroom or the boats. He knows the concept of space like big and small, far and near. He pays attention and he too has learned a world of information. He loves trucks and cars. He could play all day with them. He recently has gotten into Thomas the Train and boats too. He would be content to stay in his playroom all day long with a large selection of these toys and be left alone to just play!
My baby, the other twin and the youngest by 2 minutes and my only girl is both and Diva and a tomboy. How she became this combination I don't quite know. She just formed her own little personality when she was a baby and held onto it for dear life. It's the only way she could survive in this household! She loves to play dressup and at the same time she can go outside and kick a soccer ball clean across the front yard. She is carefree and messy. She has beautiful , long, curly hair and she does not want you to brush it. She is gorgeous in a dress and will tell you that she's pretty! She will fight with her brothers and she can hold her own. She loves puppies. She has about 10 of them and they all must sleep on the bed with her at night. If you don't have them all then it's a fight with her and she will win. She plays with her babies on a rare occasion because that is just not her thing right now. She will sword fight and then turn around and want her lipstick on . I'm not sure that some genes didn't get crossed up, but she is perfect in every single way. She is also smart, but in her own way. She has common sense. She is funny and she wants to be just like her older brother. She also loves her mommy and that thrills me! I always wanted a girl!
While having this "disability" temporarily or permanently, whatever the case may be, I have had a lot of free time to really get to spend with all of my children over the last 6 years. I wouldn't trade any of it, even to be well!
For instance my oldest is extremely smart. He knows things that I never knew anyone knew. He loves to watch the History Channel and shows of that nature. He learns from them and he can soak up all of the knowledge that he gains. He can then repeat it all and tell you stories that he heard. He also loves art and music. He can sing and he can write songs. They are good too. I'm so impressed by his passion and how he expresses himself with his love for such things. He enjoys his little brother and sister but at the same time I can see that he is growing up and they are wearing on his nerves. The ages are really showing. He is getting older, more of a pre-teen and while they are sweet and he loves them, he wants his own space too. He likes to go to my mom and dad's house and enjoys the free time he gets there. He likes some video games, computer games, baseball, etc. He's just turning into a cool kid that I'm proud to know.
My second oldest who is a twin, but still he is older by 2 minutes has a quirky nature about him. You have to be able to handle him in any setting. He likes for things to be in order, neat and tidy and he likes his routine. He is my loving child, more so than the others. He will come up for no reason and just give you a kiss. He will apologize if he hurts you or hurts your feelings. He will talk in complete, functional sentences with very large vocabulary words. He is bright and he too knows things, but he is only 3 1/2 years old. I don't know where he learned these things because we didn't necessarily teach him. He can say the entire alphabet, and count to 20, he knows all his colors, but then he knows things like what kind of trucks are in the playroom or the boats. He knows the concept of space like big and small, far and near. He pays attention and he too has learned a world of information. He loves trucks and cars. He could play all day with them. He recently has gotten into Thomas the Train and boats too. He would be content to stay in his playroom all day long with a large selection of these toys and be left alone to just play!
My baby, the other twin and the youngest by 2 minutes and my only girl is both and Diva and a tomboy. How she became this combination I don't quite know. She just formed her own little personality when she was a baby and held onto it for dear life. It's the only way she could survive in this household! She loves to play dressup and at the same time she can go outside and kick a soccer ball clean across the front yard. She is carefree and messy. She has beautiful , long, curly hair and she does not want you to brush it. She is gorgeous in a dress and will tell you that she's pretty! She will fight with her brothers and she can hold her own. She loves puppies. She has about 10 of them and they all must sleep on the bed with her at night. If you don't have them all then it's a fight with her and she will win. She plays with her babies on a rare occasion because that is just not her thing right now. She will sword fight and then turn around and want her lipstick on . I'm not sure that some genes didn't get crossed up, but she is perfect in every single way. She is also smart, but in her own way. She has common sense. She is funny and she wants to be just like her older brother. She also loves her mommy and that thrills me! I always wanted a girl!
While having this "disability" temporarily or permanently, whatever the case may be, I have had a lot of free time to really get to spend with all of my children over the last 6 years. I wouldn't trade any of it, even to be well!
Tuesday, August 4, 2009
People
Day 2.....and I find out today that some people have nothing better to do than to just talk, talk, talk. It might not bother me so badly if they actually knew what they were talking about. Ahhh, but this particular person did not know one thing. So here's the thing, I'm having trouble walking and my right leg drags a little because to me it feels heavy. This girl saw me out the other day and instead of asking me what was wrong or what was going on, she just jumped to her on conclusions. Well it might not be so bad but her mother in law and my mother are fairly good, close friends. So over the weekend this girl goes to her mother in law and tells her that I have Crohns. Ummm, where did she get that from?? No one ever told this girl that I have Crohns! Much less would you gather from my legs that I have Crohns. She never said anything to me or ask me anything. She just jumped to a conclusion on her own then decided to spread the word!
So of course mom was contacted and my point is if you are concerned then how about speak to me and if you just want to gossip then at least have your facts straight first before you start running off at the mouth!
Anyway on another note, this week it's off to the Rheumatologist to let him know what is going on. Won't he be surprised. I guess all he was thinking was that I might go to the Neuro in Greenville and maybe come out with another "I don't know" or perhaps some new info, but here we go off to Duke. He may not be as surprised as I think though. He's a good Dr and a good Christian and that's why we like him so much!
My mom took my kids for a little while. I'm going to rest. The rest of the week has some big plans, a friend I haven't seen in a very long time is coming to visit.
Always remember that you never know what someone else is going through, never assume, always pray and lend a helping hand!
So of course mom was contacted and my point is if you are concerned then how about speak to me and if you just want to gossip then at least have your facts straight first before you start running off at the mouth!
Anyway on another note, this week it's off to the Rheumatologist to let him know what is going on. Won't he be surprised. I guess all he was thinking was that I might go to the Neuro in Greenville and maybe come out with another "I don't know" or perhaps some new info, but here we go off to Duke. He may not be as surprised as I think though. He's a good Dr and a good Christian and that's why we like him so much!
My mom took my kids for a little while. I'm going to rest. The rest of the week has some big plans, a friend I haven't seen in a very long time is coming to visit.
Always remember that you never know what someone else is going through, never assume, always pray and lend a helping hand!
Monday, August 3, 2009
Fresh Start
I've decided to try and blog about the new journey I'm on. What new journey? Well about 2 weeks ago I went to walk with my mom and went numb from the waist to a little below my knees. Wait, let me back up. For a couple of days I was having some "pins and needles" feelings but I've had that so I didn't really think much about it. You know, the same 'ol, same 'ol. So I thought, great that's annoying. So then this other happen while I was walking and I busted out laughing and told my mom to go find my butt around the block where I must have left it. We laughed while I walked slowly home because I could barely move. By the next morning it wasn't so funny anymore....I couldn't move my legs that well and I was struggling to walk. Here I am two weeks later and my right leg feels heavy and I keep having these sensations of numbness on and off and pins and needles and it's annoying! I can't drive my car, I can't do certain household things. I'm probably doing more than I should be, but I REFUSE to just sit on the sofa or lie in the bed. I'm having to ask someone constantly to please take me here or take me there. At least no one has to wipe my butt! LOL. So anyone I did go see the Dr, yes a Neurologist. They were baffled. Go figure! My undiagnosed neurological disease (that may or may not be MS) anyway.... I'm now going to go to Duke Medical Center. I'm going to see an MS specialist. My appointment is on the 12. I'm scared and nervous and I'm also happy that this might finally be the answer after 6 years of not knowing. I figure that I'm having a hard time expressing my feelings and what exactly is going on with my body and what I'm feeling. No one can fully understand, unless you've been through this. So I'll write about it, here. I don't know if anyone reads this or not, but I can come back from time to time and read. This will benefit me and someone somewhere may be able to help me or I may help someone else. Either way, I fulfilled a purpose!!
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