Thursday, August 13, 2009

Moving on

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!

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!

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!

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!

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!

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!!

Wednesday, May 20, 2009

This aint easy

I just have to say that being "undiagnosed" is not easy. Having all the symptoms of MS is hard enough but on top of that knowing that there is still no clear answer is hard. I hear all the time from people, usually other MS'ers that it could be that the lesions are too small or "hidden". Makes me feel like there is some time bomb waiting to go off in my head. Not to mention the nagging feeling that I should be taking a disease-modifying drug and can't without a diagnosis. Oh this list goes on and on.

Then, oh then, there is my precious family and friends. Those who refuse to talk about it. As I like to put it, they sweep it under the rug. Let's pretend it doesn't exist and it will go away. Ah, yes, that will happen. I can see it now, if we forget long enough it will magically disappear. Why didn't I think of that all of this time? Here I was thinking to myself that while my hand just couldn't quite grasp that bottle of water, or my face was numb for a few hours or my legs weren't working quite right that if I would just think that it would go away.....it would.

I know I'm being a little sarcastic, Ok a lot! It's just that when you've lived this way since 2003 and here it is 2009 and still no definitive answer you can't help but be a little......frustrated. Most people tell me, oh it's ok to be upset. Well see I'm not really upset in a sense as I'm just downright frustrated with Dr's. I mean if you tell me you are going to do one thing and you think one thing then why not follow through? Why change your mind at the very last second? Well, I actually have an answer for that. My fellow MS group members say... BECAUSE they only practice medicine. Oh I know, that's harsh, but think about it. Everyone's body is not the same. We don't work the same way or get sick the same way. Medicine does not heal us the same or react the same. In fact I should be a living breathing case for that. My body does not like most medication. I have an incredibly hard time with medicines. Also, I'm proof that everything does not go by the book. My 10 surgeries are proof of that. So my MS should go by the book???? Geee.......

Well just something to think about and I actually think about it every now and then like right now as my feet go numb and I can't feel my toes. In a moment I'll get up to go to the living room and have to stumble because I won't know my feet are there. One day at a time I just keep saying and while it sounds like complaining sometimes, I'm smiling! I'm blessed and I'm fortunate!

Friday, May 15, 2009

Quickie

No, get your mind outta the gutter! That's not what I meant! This is just a quick blog! I just had to share this little funny thing. It really has to do with spouses. Not so much mine, but just in general. I read a little funny today that made me laugh out loud. It doesn't take much anymore to make me truly laugh out loud, but this was funny and I thought worth sharing.

Recently spotted on a bumper sticker: I believe in dragons, good men and other fantasy creatures!

Oh now that was good! So just keep believing! Some things really are worth the imagination! HAHAHAHAHHA!

Thursday, May 14, 2009

Nice Surprises

I think it's nice to be surprised and even nicer when it's a good surprise. I never really liked surprises all that much. In fact I would tell my husband not to throw me a surprise party because I didn't really want to deal with the surprise or I'd probably find out anyway. Well I've outgrown that some and now know that it's fun to get little surprises here and there. I also have realized that life is too short to not enjoy the surprises in life.

As I've come to terms lately with just how sick I am and how my body just doesn't seem to work quite right sometimes, I want these surprises in life. You might be thinking why? Isn't having your body fail in some ways enough of a "surprise"? Well I don't want this surprise, but I've learned to live with it as I recently told a friend! There are just some things you have to "live and let go" or something like that. Learn to laugh at yourself, be silly, dance in the rain, enjoy a friend, lay with your children at night, read a good book, take a nap, walk barefoot, say I LOVE YOU!

Sometimes we don't appreciate each other enough. Lord knows I don't. I'm learning though. No, I'm not dying or anything and it's not fatal, but I've learned that when life doesn't go the way you planned that you may not always be promised tomorrow. It doesn't matter if something is fatal or not. You can be as healthy as a horse. There are things I can't do with my children, can't do with my husband, my parents, my friends and I would do anything to have the last 5 years back so that I could do some things that I didn't do.

Ohhhhh enough that! I am however going to walk in the Relay For Life! Yes, I probably shouldn't, but I am. I'm looking forward to it and it has some very special meaning to me this year. I've had one friend to say she was going to come and walk with me. I think she just wants to make sure I'm ok, but you know.....I'll enjoy the company.

I never know who reads this but to those that do, I appreciate it! I hope you enjoy it or that it helps you in some way. If you get the chance leave a comment, I'd love to hear from you.

Wednesday, May 13, 2009

Know It Alls

Why is that people who "appear" to know everything really don't? The fact of the matter is that they only manage to get on people's nerves. I know many people like this and they drive me nuts. For instance.....if I was to tell a certain person that I have a degree in Criminal Justice (I do) then they might precede to tell me everything under the sun about law enforcement, criminal justice, the law, etc. We could get into a discussion where they would inevitably tell me that they know more about the said subject than I do even if they have either A. No degree or B. a degree in something else. Now I do not by any means claim to be an expert on anything, I mean anything at all, but if I'm talking to you about something or asking you about something why on earth would you even take time to open your mouth if all you are going to do is blabber on about a topic you know nothing about?

Also if someone is searching for an answer to something, and for this I'll be very vague, why is it that know it alls just automatically have to jump in with all the answers. They know the when, the where, the how and the why. I think the reality is that they don't know and just want to seem like they do. Is this a self esteem issue? Was this a problem as a child? Did no one ever let them speak and now they feel the need to speak on every issue even if the topic of which they speak sounds utterly stupid when coming out of their mouths? Just some questions to ponder from a not so know it all.......

Thursday, May 7, 2009

Making Decisions

Well it seems that tough decisions are on the menu this week in our household. It went from having to decide with Dr's about the medicine I was going to be on and how it would affect my body to.....

Now it looks as if the private/Catholic school that my 2nd grade son is at is going to be possibly closing next year. My twins were also going to be attending this school next year for preschool. In just one day I've had to make numerous phone calls trying to arrange many things for a whole years worth of schooling and for 3 children.

So what you may be asking has happened? Well for starters yesterday morning my mother went to drop my son off at school and the doors to the school were locked and no one was able to get in. No one knew why they couldn't get in either. Many parents, teachers and students were standing outside or parked outside, even on the street waiting to be allowed inside the building. All of this was with no explanation. My mom dropped my son off with other classmates and teachers and she pulled out and was immediately stopped on the street by another parent. She pulled over and was asked if they could talk. She said of course and then information just flowed! Come to find out the enrollment which this year had been around 104 will drop next year to around 35. Also about 5 teachers will be leaving.

Of course my immediate reaction is, what will happen to my child and his academics? My son is relatively smart. He has come a tremendous way in 2 years! Will you put him with Kindergarten and 1st and 2nd grade? Will you just cram everyone together? There is 1 5th grader signed up for next year and the majority of the 35 are preschoolers!! Imagine my shock and astonishment that none of us had been notified at all.

Now back to why the school was locked..... well come to find out that the Police Department SWAT team was doing a training exercise across the street at the time. They had signs up and it was apparent that they were training. The principal went balistic and locked the doors! Only, she locked everyone else OUT!!! Does anyone else see an issue here? Oh and if I haven't said it before my husband works for the police department so I can find out for sure it was a training exercise.

I'm just very sad that it has now come to this that my son is going to have to go elsewhere and that all of my children will not be under one roof as we had hoped and wished for. It was such an ideal situation, especially with one of our twins being a respiratory patient. Our oldest knows what to do and we felt confident that he could help until one of us could get there. He could also be a comfort. Now they will not be together in one school except for ONE YEAR. That's so sad to us!

Just pray for our little family and for guidance for us that we may do the right thing for our children. It is so hard raising them and knowing that the decisions you have made are right because they forever impact the people they become!

Monday, May 4, 2009

Getting By....

Well what can I say other than that I just don't do well with blogging obviously. I'm going to try to change that now and really keep up with this better. I can't say it will be every day or anything, but we'll see. So let's see what's new with us. Well my children are all the same except one year older, yes each of them. The twins are 3 and mischievious as ever! They are into everything! I think there must be some written law somewhere that says that 3 year olds must destroy our homes. Mine are working on it. They have contemplated together to drag it out for the entire year! My oldest son turned 8. He is very handsome and is really coming into those teenage sort of years which is scary for Mom! He had school pictures taken recently and I swear he looked like a little man. There is this one little girl in his class that calls every so often, he swears just for homework but 'ol Mom knows better!

My husband is still much the same too and works hard and often. It's the job of the CSI and the police department must be demanding. I have a love/hate relationship with his job. Have I said this before? I love to hate it! HAHA! No, really it's a good job. It's just aggravating sometimes. You know, like when the phone rings at 2AM or when we are just sitting down for dinner and his phone beeps. That's when I want to yell "HEY this is my time!" Oh well!

So that brings me to me. I am pretty much the same with a few minor dings. Went to see some doctors and things recently and had some medicines adjusted and switched and such. Trying to get my body to adjust to them is a whole other ballgame. You know medicines come with warning labels and all this information but really your body needs one too! I walk around like a zombie for a day or two trying to adjust to the "drowsiness" of the new meds! Well it's good sleep I suppose.

My inlaws were here over the weekend and I accidentally, yeah we'll call it that, ran into the wall and my MIL asked if I did that often. I said yeah sure! Then laughed. I thought it was funny because they don't see me enough to know that actually I do do that often.

The latest from the Rheumatologist was that he still believes I have MS, but with no definitive answer we will go with.......are you ready for this mouthful....?? Severe Fibromyalgia with MS symptoms, Parasthesia and Memory Loss and maybe even throw in a little Neuropathy in there. Geee..... and I thought everything was fine?

So that's the latest from our world and I promise to try to do a little better on keeping up with the adventures that are brewing here. It's late and I'm exhausted and what are you doing still reading? Goodnight~!

Friday, January 9, 2009

I don't keep up well on here. It's a new year and like most of you I'm looking forward to what lies ahead and the changes and excitement that will come. My twins are about to celebrate another birthday. We are busy planning and getting ready for that at the end of the month. They each have their own personalities and being of different genders make having a party together more challenging.

We inevitably must make it like 2 parties in one. My son will choose what his favorite thing is, party decorations, etc. My daughter gets to do the same. The cake either needs to be split down the middle and decorated accordingly or we need two separate cakes. It's also a special day because my best friend shares her birthday with them. It's a special day all around!

My oldest son then celebrates his birthday 2 (very short) months after this. He is of course at the age of boy/girl parties and mom doesn't hang around. Also he is thinking this year it would be nice if a few of his buddies stayed over. He walked in the other night and announced to me that one of the girls in his class also wanted to sleep over..... I think that was my first heart attack!

His father and I explained to him that girls don't sleep over with boys. Of course the inevitable question was "Why?" He's 7. Well....... Uhhhh.... Ask your father!

I still don't know if he knows why or not, but we'll be having a party before and then about 3-4 of his guy friends will sleep over. Perhaps that day I can go on a small vacation to a local hotel. At least all of the birthdays are done and over with by Easter!

Until next time, hope your days are as adventurous as mine!