How do you know? & Really?

~~~~~How do you know?~~~~~~~~~

Since I am still pretty new to the MS scene.. I have a question. How do you know? By that I mean how do you know when it is time to get the doctor involved because of new symptoms.  The problem I come across is that the one doctor I see, if I mention the littlest thing (for example – the fact that I had removed bread from my diet and it seemed to help a little bit) Then it snowballs in to more and more tests and more expenses that my insurance may or may not pay for. I opted not to have the test because to me its pointless to test to see if bread affects my system if I’ve already resoluted to not eat it anymore. Doesn’t that make sense?  Coupled with the fact that even if they do pay part of it, I still can’t pay whats left. ><  Least not right now, and I fear its only going to get worse. I am still trying to figure out how to pay for the three different tests that they did to figure out that MS is what I had in the first place.

My MS tends to be a very fluid pretty consistant situation. It is usually in one of my two legs or feet, or both. Ironically today my legs/feet feel just fine, and my left arm is numb, especially my pinky finger, and my left side of my back. That being said, I know that in a few days it will be something totally different with a slew of different affected areas and different sensations… so when is when?

And if they really can’t do anything for me except inject me with more drugs that they “think” might help, but aren’t really sure how, then how do I know just taking time to relax and let the symptoms settle down wouldn’t be better and cheaper, and cause my family far less frustration?  It would be one thing I guess if it was to a point where I felt like I totally couldn’t walk, or couldn’t function.  Its painful at times, but right now its still more of a frustration and annoyance at my body for not keeping up with me, but I find that sometimes maybe at the moment if I can’t do something, I’ll just try a little later, and I can do it. Mind over matter I suppose… but it doesn’t always work.

I’ve restarted the Copaxone, which for whatever reason both times I’ve felt worse at the beginning. I’m told that is not common in most patients, and they attribute it to my lack of enthusiasm to take medicines in the first place. Maybe I have the wrong attitude, I’m going to have to pray on that one I suppose, for clarity. Now where did I leave that Serenity poem.. ^^

~~~~~Really?~~~~~

This weekend, my daughter went to her friend’s birthday party. When she returned, she told me that her friends mother had asked how I was doing with the MS, and Shelsea said I was doing alright. With that, Shelsea said that her friends mother turned to one of the other adults at the party and was talking on and on about how I “only eat vegetables” and how I’ve let MS take over my life…… (and  this conversation all in front of my child as well.. >< )

 Hmm…. So because I’ve chosen to be more careful about what I eat, and try and be better about doing my part to live healthier, then in others point of views,  I’m no longer in control of my life? I’ve let MS take over? ………Really?

The crazy thing is I’ve only spoke to this woman once since I found out, and it was not even that long of a conversation.  And really it is not as if I happen to hold that much respect for this individual in her particular life decisons and priorities, so I suppose that should be the end of my frustration over her comment right there. To consider the source… still, it frustrates me a little..

 I’m not as physically active as I’d like to be, in fact it bugs me that I’m going to have to be careful this summer once we start working on the house. I want to be there the whole time! I know I won’t necessarily be able to, but still. I have always had a “push on thru” attitude when it comes to work. I like to get things finished! But I know I’m going to have to alter my attitude a bit, but I still don’t think it means that I’ve let the MS take over.

How is it that someone can “know” one thing about you, or have one conversation with you and think they are endowed to a place where they can judge you?  

MS is not my life priority, If anything I emphatically try to not let it interrupt the way things were before. In some things I’ve succeeded and in others I’ve had to make alterations, but I’m still not sure that means I’ve failed and that MS now equals the definition of me.

 I still try to be there for my husband,  I still take time out to have quality conversations with my kids on what they are thinking & feeling, and try to help give them direction and guidance where they need. I still try to be there for my sister as she goes through her 1st pregnancy,  I still volunteer and teach my son’s children’s church class on rotation, and I still go to work full time, and try and do a good job there, and I still try to keep up with friends when I can.  

And so what if I actually care about what I put in my body? Should it really an issue to anyone else? Should it be something to put me down over?  In a counseling video by a gentleman named Gary Smalley, he spoke of finding treasures in difficult situations. The “pearls” as he called them were good things or lessons that came of bad situations or events.

If anything, I can say that because of the MS, I’ve paid more attention to my health and what I eat, and in doing so, (though it wasn’t the initial intended result) I’ve lost about 20lbs now, and even was able to put on my wedding dress last night at the urging of my children! I hadn’t been able to do that for years! Plus I now have a valid venue in which to instill healthy eating habits in my children. Is that such a bad thing? …….This is what I’m saying.

 

 

 

Plot pictures

 

We went out and took a look at the area where our house is going to be yesterday. I got a few pictures as I am planning on taking pictures through the whole process. I opened a Flickr account, and will post pictures up there. You can find the link in my Blogroll under “Serina’s Flickr” or visit http://www.flickr.com/photos/sclason/

 Doesn’t look like much now, but here is our plot, grass and dirt… However I am very excited about what it will morph into this next year…

Deon looking at Back yard area (not all ours)

Deon looking at back yard area (not all ours – there will be other houses here too)

Here is a picture of the neighbor’s house they are working on now….

Update & Habitat Meeting

I should get my Copaxone today. I didn’t do so well in getting things set up so I wouldn’t go without, so I have been off it a week or so, but I finally got things situated and the refill ordered “correctly”.

I don’t know if it really can be associated with the not having medicine as I’ve been told it takes quite awhile for copaxone to start helping, but its been kind of a hard week as far as my legs were concerned. The MS was definately active, and I had even had a few wierd things going on with my arms/hands and neck periodically which may or may not have been due to MS as well. It may have just been fatigue making those things happen.

I had been really tired alot lately, and all kinds of things going on, but I can only blame myself for not taking care of myself the way I should. Its easy to fall back into the same old routine. Especially when extra things come up like car repairs etc.. (Had to deal with that this last week.. >< )

 Like many people we really do live paycheck to paycheck, so when things out of the ordinary…  it really can make things difficult. I’m working to get things squared back away to where I have the vitamins I’m supposed to be taking, the copaxone, and the foods that have been better for me, so hopefully the MS will calm down again soon.

My youngest sister and her husband are expecting a baby, and yesterday afternoon I got a call that she was in the emergency room. I rushed down to see her, as she had been in bad pain and we were really worried about her and the baby. Luckily everything is alright. She has a cyst which they said there isn’t really anything they do for cysts, but hopefully it will just go away. The cyst I guess doesn’t affect the baby, so that is at least good. She just needs to take it easy for a bit.  They did an ultrasound, and she got a few pictures, that I’m sure eased her mind in regard to her baby being ok.

After we went home, we got things together and went to our first Habitat Class. There are 8 or 9 two-hour classes that we will be taking as a part of our partnership to build the house. We also get credit for them towards our sweat-equity total.

This is a great program, I’m very excited about it. I’m impressed by how they manage things, and how its not at all a “hand-out” but rather a “help” in the right direction. They are very interested in giving you the tools and knowledge to be able to succeed. It is not by any means a program that they just “give” people houses. There is alot of work involved on the recipient’s part, really they just walk you through it all, and give you an amazing opportunity that you might not have had any other way.  

The Meeting we had last night went over descriptions of how they work the Mortgage payments, and those details. Someone came in even and talked to us about getting a Will set up, and another woman went over Home Owner’s insurance information with us. I was glad for the opportunity to go.

I met some of the people that will be our neighbors. Our home is going to be a town house with a common wall. Our very next-door will be a Hispanic couple with three children (so our 3 kids may have friends close by to play with ^^). They seemed very nice although they don’t speak much English, but Deon and I have been talking about taking some Spanish classes anyway as it would help him at work, so maybe its just an added reason now. There are a couple of single mother’s who seemed very nice and a lot of fun as well. Their home is already in the process of being built.

It sounds like at the next meeting we might decide which side of the common wall will be ours (right or left.. lol) If no one has a preference, then we’ll flip a coin they said.. 🙂 I don’t know that I have a definate preference, we drove by and looked, the one side has more trees than the other, but really no reason we would have to be unhappy either way. 

There is also another space where they will be building homes next year right in between where ours will be and the two single mother’s homes are. I’m thinking that it could be cool, and definately have entertainment value in that if anyone in my family says they are bored after we move in, I can go tell them to go next door and help build that house.  I’m actually excited at the prospect of being able to walk next door – volunteer, and then go home without having to go very far.. lol. (I know, … I’m strange)

 

 

Birthday fun

Yesterday was my Birthday, I turned 30.

In the morning, we had our very first appointment with the people at Habitat for Humanity. They all were very nice, and answered the questions I had. We have a family partner named Brenda to help answer any questions along the way. We also got to drive by the area where our house will be. The house is going to be a town house that actually has a common wall with another family. The other family has three kids as well, so the kids will have neighbors to play with.

At work, my boss always makes desserts for people’s birthdays. I have abstained the last few months, mostly because of my MS diet. Yesterday however, she made a peach/strawberry crisp (maybe cobbler, I’m not sure the difference) that was wheat/gluten-free, dairy-free, and was ok for me to eat. It was very good. It was the first “dessert” of that kind that I had since we found out about the MS.

For dinner, my husband took us out to Chinese. It was fun. Then afterwards we went by Lowe’s to look at “House things” … lol

It was a pretty fun day all in all.

Habitat for Humanity

I’m not sure that anyone local reads my blog.. lol, so I think it could be safe to go ahead and post this. Our application was accepted to Habitat for Humanity, and we will be partnering with them to build a new house for our family! We are elated! This is going to be such a great thing, and I’m very anxious to get started on our “Sweat equity” hours.  It is a such a blessing! I am told that they will even work with us to make the house in such a way that it would be wheelchair accessable – should the need arise in the future. (Obviously hoping my MS doesn’t get to that point, but it is so great to take comfort in the fact that if it does happen, my home may be a little less difficult to get around as it might normally be.)

Our first meeting with them is on the 18th (My Birthday! – Happy Birthday to me!!)  I feel very blessed to have this opportunity!

Open up my heart and let the healer set me free…

So many times, I realize that while I think I have a handle on understanding “the big picture”, I am blown out of the water sometimes by gentle reminders that I don’t neccessarily always “know best”.

Don’t get me wrong, I think for the most part my heart is in the right place, but aside from that I can only do the best I can. In the great scheme of things, I seem to be much better off when I put things in the Lord’s hands rather then rely on the power of one.  It can be real hard for a “Do-er” to sometimes make that realization, and sometimes even though I think I’ve learned that lesson, God has to keep reminding me.

Lately I’ve just really been thinking about things. I realize that things in our life have a tendancy to get mundane and feel overwhelming. Especially when you have difficulties that aren’t able to be remedied. As a people, we commonly get to a state of apathy. A place where we start working on auto-pilot in our lives. This is not a healthy place to be, and yet I have to admit, that many, many times I will find myself sinking into that hole. 

The thing is, that while we can “only do our best”. We need to make sure we are really giving our life our best effort, and not just saying we are. We have only one chance of living this life, so we should live it! My church recently did a session on the theme of “Live like you were dying” and it was very thought provacative.

No do-overs available, just one chance really to make the most out of our lives.  I have “One chance” to really make sure those around me know what they mean to me. “One chance” to impart to my children lessons I feel important. “One chance” to lend help and support to those around me…  If I don’t make it important to make this “One chance” matter, there may not be time later.  

 

I have a real reason to offer praise right now, that I will have to wait a little bit before I can write about, but I will soon.

I heard this song this morning, and it just made me feel good. So thought I’d share 🙂

 

I Could Sing Of Your Love Forever

Over the mountains and the sea,
Your river runs with love for me,
and I will open up my heart
and let the Healer set me free.
I’m happy to be in the truth,
and I will daily lift my hands:
for I will always sing of when
Your love came down. [Yeah!]

I could sing of Your love forever,
I could sing of Your love forever,
I could sing of Your love forever,
I could sing of Your love forever. [Repeat]

Oh, I feel like dancing –
it’s foolishness I know;
but, when the world has seen the light,
they will dance with joy,
like we’re dancing now.

Written by Martin Smith ©1994

Quotes from a past co-worker

Today is the last day of a co-worker of mine. They sent the staff out an e-mail saying their goodbyes as well as leaving us with the following quotes to think about. I like them, so thought I’d share…

No one person has all of the good ideas and a good idea is incomplete with out the input of others.

Great minds discuss ideas; average minds discuss events; small minds discuss people.

 Learn from the mistakes of others, you can’t live long enough to make them all yourself.

 And last but not least, friendships are not ended by separation or distance.

$20.00

(an e-mail Forward I recieved that I liked)

Subject: $20
A well-known speaker started off his seminar by: holding up a $20.00 bill. In the room of 200, he asked, ‘Who would like this $20 bill?’

Hands started going up.

He said, ‘I am going to give this $20 to one of you

but first, let me do this.
He proceeded to crumple up the $20 dollar bill.

He then asked, ‘Who still wants it?’

Still the hands were up in the air.

Well, he replied, ‘What if I do this?’
And he dropped it on the ground and started to grind it into the floor with his shoe.

He picked it up, now crumpled and dirty.

‘Now, who still wants it?’

Still the hands went into the air.

My friends, we have all learned a very valuable lesson.
No matter what I did to the money, you still wanted it because it did not decrease in value. It was still worth $20.

Many times in our lives, we are dropped, crumpled, and ground into the dirt by the decisions we
make and the circumstances that come our way. We feel as though we are worthless.
But no matter what has happened or what will happen, you will never lose your value. Dirty or
clean, crumpled or finely creased, you are still priceless to those who DO LOVE you.

The worth of our lives comes not in what we do or who we know, but by WHO WE ARE and WHOSE WE ARE.

Square One with Psoriasis

We took Haiden to another Dermatologist, and unsurprisingly we are starting over with the same medicines that the original on had tried on him. Although this time, they only want to try it for 2 weeks to see if there is progress. At least it won’t be as long before we know if they want to try another route.

A small frustration is that when I asked about the light therapy, they seemed to kind of shrug it off saying that no one really does that much anymore, and it would be too difficult.  😦 

The sunlight has helped Haiden a lot…   More of this “Medicine is the only treatment” type opinions.. It just bothers me sometimes how sometimes there seems to be  “blind eye” attitude as far as consequences of how we eat or how we live affects us in dealing with health problems.  To me it seems common sense and something you should take seriously.  

But then I am not as educated I suppose.. ><  /sarcasim off

 

Spirituality > Religion

It is the actions of love inspired by a belief that is important – rather than the conformity of all that matters to God. If it was Conformity God wanted, there would be no free will.

Also, its interesting to think, that during Jesus’s time on earth here, He was actually considered the non-conformist, and a radical.

Fun Clips:

Bruce Almighty on “Free Will” http://www.youtube.com/watch?v=6et2ZSodS0g

Thoughts on Prayer: http://www.youtube.com/watch?v=sjRleIxGQ_U&feature=related

Michael W. Smith ~ Secret Ambition: http://www.youtube.com/watch?v=NoroARcCL1c