Thursday, February 24, 2011

MS Misunderstood

Finally finding a couple moments to sit down at my computer this evening I can't believe all that's happened since I last posted. It seems after coming home from the hospital the whole house has been sick. So much has been going on its no wonder I'm feeling overwhelmed and I find myself questioning if I too, am starting to relapse. I find myself having more and more pain and weakness and my cocktail of drugs just isn't taking the edge off or slowing down the symptoms of this darn disease. I am one of the lucky that doesn't have insurance and hasn't been on anything to slow this disease down. I did on two occasions make an attempt of Copaxone several years back which only made me sick as a dog. That being said I push forward like I always do attempting to hide any imperfections I may be showing.

Just a couple days ago while helping my oldest son look for a new vehicle I found myself laying on the ground after a fall. Looking back I'm not sure if it was more painful or embarrassing at the time. All I could think of was to get up before anyone seen  to avoid further embarrassment. As I tried to stand I found myself crawling as fast as possible through the snow until finally reaching a vehicle and eventually pulling myself up. I did later tell him only because I was in pain and needed to make certain beyond a reasonable doubt my clumsiness wasn't witnessed. For some strange reason my boys would have found it hilarious to have seen. Not that they want me hurt by any means but I honestly believe that still after all this time no one understands my illness or its complete effects.

Just today my husband called and was extremely concerned about the dizziness he'd been having all morning. He then informed me I had no idea what this was like. Hmmm.... really? Now don't get me wrong I am very concerned about his health. To be completely honest, that's probably what has brought on my own relapse. I mean its not like this hasn't all been stressful on me too. I am so busy trying to keep his world calm that now I'm getting stress two fold. The thought that he believes I have no idea honestly upset me. If after nearly 7 years since my diagnosis he still doesn't get it; will he ever? It's no wonder no one else thinks twice about it. I mean here I am trying to learn everything about his heart disease and how as a family we can work together and he has obviously never taken initiative to learn about a disease I have suffered with for 7 years. I guess if you can't see it its not there.

It's not just the men in the family by any means. I was talking to the oldest daughter earlier. The discussion was in regards to bypass surgery she hopes to have.  She was explaining to me why she can't do certain things right now due to her weight. Oh, I see. Again, I find myself dumb founded. Now I have been over weight the past 20 years. While being obese definitely lowers my self esteem and makes life harder it has never come close to affecting me like the MS has. As I tried to explain that she says, "oh, ya, well I suppose". I swear I just want to pull out my hair. Why does no one get it?

I'm honestly not on a pity trip here I just wonder why can I never be sick? Someone always has it worse. Or looks at me like I'm faking. Maybe I should try this or that. Take this vitamin or some remedy they heard about. For Pete sakes if there were a cure or something that would work I would be the first to know. It would make national headlines and my doctor would let me know.

I look to my followers with MS and ask, am I the only one?

Saturday, February 19, 2011

Thank you Kimberly for the Stylish Bloggy Award

A HUGE thanks goes out to Kimberly from for giving me this award!! Somedays,  I feel that Kimberly is the only one reading my blog. She Rocks!!!

Here are the rules that go along with receiving this award:
1. Thank and link back to the person who awarded you this award.
2. Share 7 things about yourself.
3. Award 15 recently discovered great bloggers.
4. Contact these bloggers and tell them about the award!

About me:
1. I'm a Mother to 5
2. I'm a Grandmother to 3
3. I'm a Foster Parent
4. I'm a DJ but mostly in the summer.
5. I'm petrified of mice, rats, bats! Ick!
6. I love to hunt, fish and camp with my family but would never probably do any of them if it weren't with them.
7. I have Multiple Sclerosis and I truly hate it.

The bloggers I nominate:

I hope you will check out these girls. They rock!

Friday, February 11, 2011

Cardiac changes are necessary

What a week! We've been through so much and tried to make so many changes yet some things are more resistant then others. I'm learning its harder then I ever imagined cutting down on the cigarettes. Little alone quit! The cardio diet has actually come pretty easy. To be honest we always did eat pretty good but there were some uninformed choices and hidden facts we were unaware of. So were learning to read labels alot better and making some positive progress. Well all except for the 4 motzi sticks I had to have tonight. I'm not quite sure why... I guess its like anything else you don't miss it till its gone. I can't even remember the last time I ate one but today... I HAD TO HAVE IT! Now stress........

Thats a whole new ballgame. No matter how many times I say it. No matter who it is or what we've been through. No one is getting it. I guess when you set a presedence of doing everything you can for everyone your whole life and all of a sudden you say "I need a break" people don't believe you. Well Im telling you I've learned this week by taking my own blood pressure on several occasions that I truly need to slow down. What I always thought was easy Im finding out is taking its toll on me. Im drained. Exhausted to be honest. The hard part is I don't think anyone is listening. It would be easy to just say I cant do it all for everyone anymore but its not that easy when its your family and you love doing it. Were working on it but Im thinking its time to make some time for myself and my husband. Its time to get some sleep too.

Monday, February 7, 2011

My husbands near heart attack and how our Anniversary saved his life

After 6 long days my husband shared a secret. The secret that almost cost him his life. He had been having chest pain that was radiating down his arm. My husband who is a strong man tends to wait until the last minute with everything. He's a mechanic and when he gets something in his head....
So the evening before our 16th Anniversary there we are, him kicking and screaming, as I demand he get in the car and seek medical advice. I, who just became aware of this, was concerned but unsure because of it occurring 6 days already.

Upon entering the Emergency room they immediately hook him up and start a EKG. The ER Doctor immediately is assisting, which leads me to further concern. After just a half an hour and some more tests the doctor insists my husband must spend the night in order to run a battery of tests in a timely manner. The doctor escalates our fears as he suggests my husband could be heading towards a heart attack. Being a dedicated employee that my husband is and an even more dedicated husband he is now upset and wanting to go home. Its definitely not the way we intended to spend our Anniversary but I know we must stay and insist upon it.

The next morning (Friday) is our Anniversary. After a tiring night we awake bright and early for a stress test among others I can't even pronounce. The stress test appears normal, which immediately in my husband opinion, is reason to go home. Several hours later the hospital informs us they are working on discharge papers when another doctor making rounds stops by and has some serious concerns. She believes the stress test may be inconclusive and asks us to stay for one more further test. Something not typically done but would show a blocked artery on some kind of a cat scan used for hearts. My husband agreed only because he wanted to go home and continue on with our Anniversary plans. Less than 2 hours later she gives us the blow were no longer expecting. The test shows a blockage and she immediately starts blood thinners and moves us to the cardiac care unit and schedules surgery. We are both in shock and scared to death. At 45 years old and a strong family history we know this is serious. My husband began to focus his concerns on the fact that our anniversary is now officially ruined. I, on the other hand, seen it in a different manner. I agree we wont forget this anniversary but more positively because this is the one that will save his life. After only getting 2-1/2 hours of sleep the previous night one would think I would have completely crashed. However, as my nerves got the best of me that proves to be a difficult task. Sleeping in a hospital recliner is no help to my mission and after a restless night I basically end up with a 2 hour nap.

Saturday morning they come and get him a half hour before the scheduled 9am surgery. The surgeons are ready. The plan is to start with an angiogram and then move into placing a stint if the angiogram confirms the necessity. I'm told the entire procedure will take about an hour. I await in a hospital waiting area alone for one hour as I continue to pace while talking occasionally to family. The first surgeon eventually comes out and confirms he will need a stint.He informs me the blood is barely making its way through the narrowed artery and its over 90% blocked. The surgeon says its truly a miracle. Most people do not have any warning. He believed had my husband went to work Friday or exerted himself in the least there was a great chance he may not have been with me today. I feel relieved they've found the problem but also realize were not by any means out of the woodwork. Looking at the clock I begin my pacing again until the second surgeon appears. He basically says the same thing but adds they've placed 2 stints in. Surgery has went well and he's stable I'm told. It will be a long recovery and he needs to take it easy.

EASY... our life? Wow! Wake up call!! Now you may have read my latest blog on "my life as a caregiver" you can about imagine my husband is the same way. He's a mechanic. He loves working on cars and when he's not at work it seems someone is constantly needing his assistance or expertise. Not to mention there's always something going on here.

As I start to walk down the corridor to my husbands room I see him ahead of me being wheeled into the room. He smiles at me as he catches a glimpse. I smile back as I can't help but think how he managed to dodge the bullet. As the nurses are getting him adjusted I say a silent prayer to God and thank him for watching over us. For the next 8 hours my job will be to make sure he doesn't move his leg or head. Apparently doing so can cause a person to bleed out and die rather rapidly. I can't stress enough what a difficult task this can be when the person laying there is on morphine and not in their right mind. Not to mention he believes he's working n a car and is trying to pull off a "zip strip" which happens to be the very tube for the angiogram that I am trying to keep in place.

Today is Sunday and he looks great. I can hardly believe he's just been through heart surgery less than 24 hours ago and here we are waiting for the doctor to see him. I anticipate we will be staying yet one more day and head down to the vending machine. As luck would have it I come back ten minutes later missing the doctor. Apparently my husband has persuaded the doc into letting him check out and is rushing them to discharge so he can make our youngest grandsons baptism at church. I can't believe he feels good enough to go but the doctor ok's it.

Service starts at 10:30am and its already 10:00. With no time to stop at home we make the brave decision to head straight to the church which is a 20 minute drive. This all sounds fine other than the fact we look terrible and he's in pajama pants and an old t-shirt. We decide God isn't judgemental and hope our family and congregation won't be either. It was quite the surprise to family as we walked through the door. I have to admit I felt at total peace. It was almost like a calling. A new beginning to a wake up call. At one point as I held my husbands hand and we all sang I looked up at my husband and we both had tears in our eyes. It was such a special service and a blessing to have the whole family gathered together for such a joyous event.

In less than a year so much has happened. My Mom with Ovarian cancer, her remission and now this. It really puts a perspective on life and confirms life is never promised to anyone. You never truly do know when tomorrow will never come. For us we are vowing to slow down a little and enjoy life a little more. We vow to eat healthier, quit smoking and not concern ourselves with people who make our lives unhappy. We've decided there are people who for some reason seem to cause us a great deal of stress and we are done allowing them in our lives anymore. Sometimes because a person is a blood relative they believe they are more important then anyone. Or that they have a right to butt in where they are not wanted. It was because of certain individuals my husband had hospital staff ban individuals from coming in his room. It was also his desire I not blog and none of us post anything on facebook regarding his health until we were at home. Its sad that a person must go to such lengths to keep the poison away.

I've always said that I would do anything for my family. And I will. I will do anything for others in general as long as they are good people who are respectful to my self and family too. But cross that line and I will shut you out forever. Well my friends.... Blood is NOT thicker than water because you are disposable. We have some of the most amazing family and extended family and blessed friends that we consider our family. We will not ALLOW you to poison us anymore.

I look forward to stopping to smell the roses just a little more often and finding fun and exciting things to do with my husband as we go on walks or find more physical activities to participate in. Thank you for all your thoughts and prayers.... I look forward to spending many, many more anniversary's together as we continue to grow old together.

Wednesday, February 2, 2011

Like us on Facebook

Yay! Were on facebook and now offer networked blogging. Please like us on facebook and follow through network blogging as well.
Thank you Megan for all your help tonight!

Predictable Me and the un-predictable life

My life is about as unpredictable as one can ever imagine. In order to accomplish all that I do in every day I trust a lot in my iPhone. I set all my reminders and appointments. Access my email, blog, facebook.... the list is never ending.
For example: Imagine when your expecting a baby. You might plan for months. Making every imaginable preparation.
Now in our home I could get a phone call right now or 3am for that matter. It happens quite a bit. Protective services will call looking for a home to house 4 children. Within the hour I would have beds set up and made and rooms arranged to fit everyone. Morning might bring different schools or daycare, another child with me all day, doctors, etc. In our family we really never know.
There are somethings in life that are predictable: That is "Predictable ME" I always try and help everyone anytime I can.
A few days a go I questioned why I was even blogging. I mean I don't think my own family even reads my blog or cares what I'm writing about. I'm pretty sure know one understands that its a few minutes a day just for me. I really don't even have time to come on every day. So... I was ready to give up. All of a sudden my blog just explodes. I've met so many wonderful people in the past couple days and have come to the realization people do still care in this world. You have all lifted my spirits and given me something I must have needed for a long time. A reason to make time for me. If even a few minutes a day or a couple times a week.
Thank you all for joining my predictable quest in my unpredictable life.