Its been a while since I posted so I'll try to catch you up with whats been going on. As usual the past couple weeks have been crazy.
Last Monday I found out that NORD had finally approved my Copaxone injections and it was going to be delivered on Wednesday. Thank you NORD and Shared Solutions. It only took three months to get approval but hopefully it will be worth the wait! There is now a three month supply of $12,000 liquid gold sitting in my fridge!! It was easy to get excited about finally getting my meds until the reality of actually starting my injections kicked in on Monday when the nurse from Shared Solutions actually showed up at my house to teach me how to do the injections myself.
The reality is, it SUCKS! Don't get me wrong I'm glad to finally be doing something to "treat" my MS but the reality is, it hurts. I'm told it will get better with time. I personally think the pain doesn't get better you just get used to it and it becomes your new reality.
My DH and I went to Kansas to see my step-son play in his last football game of the season. For most it wouldn't be a big deal but this was the first time we had spent any time with him in three years. After his last visit we had so much trouble with him we told him he couldn't come back until he could act right. Well three years later, and several arrests later, he finally decided he was ready. I really do hope it continues.
Monday, October 25, 2010
Tuesday, October 12, 2010
Prayer and Patience
I'm learning alot about patience on this roller coaster ride that is MS. At the same time I'm learning alot about the power of prayer.
God does answer our prayers, we just have to ask. Weather its something trivial, or something monumental he wants to hear about it. That doesn't mean hes going to give us what we want just because we ask for it. He sees the big picture and knows our futures even if we don't. He always answers our prayers, even if we don't like the answers we get. I'm finding that out the hard way lately.
When I had my first MS flare up (which wasn't really my first just my first one diagnosed) I prayed so much and for so many different things it got to the point I didn't know what to ask for any more. By the day of my scheduled MRI's I was just praying that my tests were not inconclusive. On the day of my appointment with Dr.G and what turned out to be the day of my diagnosis my test were in fact not inconclusive but they were not the answers I was hoping for.
In the days since my diagnosis there has been many ups and downs, lots of prayers prayed. A big one for me has been how am I going to get my meds? God show me how. My meds are around $4000.00 a month just for my injections. Well after several long months of filling out paper work and waiting yesterday that prayer was answered in a BIG way.
I was at school, as I am every Monday morning and got a phone call from an 800# that I clearly was not going to answer because 1) if its an 800# chances are is just a bill collector about my hospital and I have nothing new to tell them 2) I'm at school and not everyone needs to know my business (although I am telling all of you!). The call went to voicemail, which until Sunday night had not been working, and surprisingly enough someone left a message. My thought was man those bill collectors are really persistent if they go to the point of leaving a message. After my last class was out and I had trekked what feels like 50 miles across campus I was sitting in my car trying to catch my breath I figured I would listen to the message and find out who wanted money now.
To my surprise it was not a bill collector at all. I listened to the message 4 times before it really sank in what the woman from Walgreen's was telling me. She was trying to set up a shipping date for my first 90 day supply of Copaxone. I laughed, I cried, I laughed some more.
It comes tomorrow!
I can honestly say I have never been so excited about getting a shot in my entire life! I'm sure the excitement wont last long once the reality of giving myself injections every day for the rest of my life sets in, but for now I'm ecstatic and oh so thankful.
God does answer our prayers, we just have to ask. Weather its something trivial, or something monumental he wants to hear about it. That doesn't mean hes going to give us what we want just because we ask for it. He sees the big picture and knows our futures even if we don't. He always answers our prayers, even if we don't like the answers we get. I'm finding that out the hard way lately.
When I had my first MS flare up (which wasn't really my first just my first one diagnosed) I prayed so much and for so many different things it got to the point I didn't know what to ask for any more. By the day of my scheduled MRI's I was just praying that my tests were not inconclusive. On the day of my appointment with Dr.G and what turned out to be the day of my diagnosis my test were in fact not inconclusive but they were not the answers I was hoping for.
In the days since my diagnosis there has been many ups and downs, lots of prayers prayed. A big one for me has been how am I going to get my meds? God show me how. My meds are around $4000.00 a month just for my injections. Well after several long months of filling out paper work and waiting yesterday that prayer was answered in a BIG way.
I was at school, as I am every Monday morning and got a phone call from an 800# that I clearly was not going to answer because 1) if its an 800# chances are is just a bill collector about my hospital and I have nothing new to tell them 2) I'm at school and not everyone needs to know my business (although I am telling all of you!). The call went to voicemail, which until Sunday night had not been working, and surprisingly enough someone left a message. My thought was man those bill collectors are really persistent if they go to the point of leaving a message. After my last class was out and I had trekked what feels like 50 miles across campus I was sitting in my car trying to catch my breath I figured I would listen to the message and find out who wanted money now.
To my surprise it was not a bill collector at all. I listened to the message 4 times before it really sank in what the woman from Walgreen's was telling me. She was trying to set up a shipping date for my first 90 day supply of Copaxone. I laughed, I cried, I laughed some more.
It comes tomorrow!
I can honestly say I have never been so excited about getting a shot in my entire life! I'm sure the excitement wont last long once the reality of giving myself injections every day for the rest of my life sets in, but for now I'm ecstatic and oh so thankful.
Monday, October 11, 2010
A Lesson in Patience
We all have things to learn in this world.
Evidently right now I'm getting a lesson in Patience.Weather I want one or not.
All of my paper work for my medical assistance has been turned in, twice. Back in Aug. I was told "they" ,whoever "they" are, only had 30 days to make a decision. Well its clearly been more the 30 days, still no decision BUT I did get a nice little letter in the mail saying "they" were waiting for more of my medical records before a decision was made. Turns out "they" are a medical review board that gets to decide if I'm considered "disabled" enough to get assistance.
Assistance that only lasts for 3 months.
3 months that have clearly come and gone.
So even if it were to be approved it wont do me any good at all except to pay my hospital bill from the diagnosis.
I'm also playing the waiting game with Shared Solutions, and NORD.
They are the companies I am trying to get my meds through. Its a long process of hurry up and fill out these papers, make copies of your entire life, send them in, and wait. The wait is torturous. Its been six weeks since I mailed my packet off and you guessed it, still waiting.
The waiting is making me crazy!
Evidently right now I'm getting a lesson in Patience.
All of my paper work for my medical assistance has been turned in, twice. Back in Aug. I was told "they" ,whoever "they" are, only had 30 days to make a decision. Well its clearly been more the 30 days, still no decision BUT I did get a nice little letter in the mail saying "they" were waiting for more of my medical records before a decision was made. Turns out "they" are a medical review board that gets to decide if I'm considered "disabled" enough to get assistance.
Assistance that only lasts for 3 months.
3 months that have clearly come and gone.
So even if it were to be approved it wont do me any good at all except to pay my hospital bill from the diagnosis.
I'm also playing the waiting game with Shared Solutions, and NORD.
They are the companies I am trying to get my meds through. Its a long process of hurry up and fill out these papers, make copies of your entire life, send them in, and wait. The wait is torturous. Its been six weeks since I mailed my packet off and you guessed it, still waiting.
The waiting is making me crazy!
Sunday, October 10, 2010
The Diagnosis...
I started this post back in June when I got my diagnosis....and then walked away from it without finishing it...several times over. I just couldn't do it. I couldn't face it in my every day reality. I couldn't put it into words when I couldn't even wrap my mind around it. So I walked away from my blog and haven't come back until now...
Multiple Sclerosis
Multiple Sclerosis
I have Multiple Sclerosis
I can still hear my Neurologist, Dr. G, saying those words. I'm sorry Denise but all of your MRI's are conclusive. You have multiple lesions in your brain and the one in your neck. At some point we will need to do an MRI of your spine as well to check for more lesions.
After hearing MS all I heard Dr. G say was Blah Blah Blah blahblah blah blah...
I was glad I had someone with me but was horrified that it was my 19 year old son. What a way for a child to find out that his mom is sick. Not that I had much choice, I didn't. I was still recovering from having high dose steroid treatments, and let me just tell ya the side effects, for some people, are ugly. I'm one of the lucky ones. It was ugly. I have a love/hate relationship with steroids. They worked wonders but I felt awful for a good 2 weeks.
Here's a little history:
It was May 21,2010. I'll never forget the day. It was my sons graduation day. It had been a pretty layed back day. We had all been out of school for a couple of weeks and just enjoying the beginning of summer at home. I had noticed some tingling in the very tips of my toes for a couple of hours. Not even anything major and honestly if I hadn't been sitting at home all day with no shoes on I probably wouldn't have even noticed it.
As I was getting ready to leave for graduation, the side of my arm and hand, down by my pinkie finger, started to tingle. I dint think much of it at the time. Earlier in the year I had been diagnosed with Carpel Tunnel. I had been holding a camera for a while by now so I just attributed the tingling to the combination of the two.
By the next morning both of my arms were tingling. By mid afternoon I was numb and tingling from the chest down.
After a few days I went to a walking clinic to see what was going on. I figured a walk in would be cheaper because I don't have insurance and didn't want to waste the money for them to tell me I was OK, no big deal don't worry. After several hours in the clinic and a visit from the local vampire to draw what seemed like a gallon of blood I left with no answers and a very large bill.
About a week later my tingling had turned into full blown numbness and my numbness had started to become increasingly uncomfortable, and I had started to lose some function in my hands. It was time for a trip to the ER.
Its amazing how fast things happen when you walk into an ER and tell them your numb from the chest down. I didn't know what the big deal was, why was everyone freaking out? I had a full set of neck x-rays and was headed to the MRI machine within 30 minutes of walking into the hospital. Turns out things didn't continue to move that fast. After waiting what seemed like forever a nice doctor came in to tell me "we" were waiting for a neurologist. WOW wait a minute, a neurologist? Why do I need a neurologist? Now I'm freaking out.
When the neurologist, Dr.G, finally came in he did a few test, made some faces, and scribbled some notes, and scowled some more. I knew this couldn't be good. He said I had Transverse Myelitis, went on to explain what it was and then proceded to gloss over the fact that this "could be a sign of something else" and I needed to have some more tests done. Another MRI, this time with contrast, on my neck and one on my head along with a lumbar puncture. BUT he continued to reassure me that chances are everything would be fine.
Multiple Sclerosis
Multiple Sclerosis
I have Multiple Sclerosis
I can still hear my Neurologist, Dr. G, saying those words. I'm sorry Denise but all of your MRI's are conclusive. You have multiple lesions in your brain and the one in your neck. At some point we will need to do an MRI of your spine as well to check for more lesions.
After hearing MS all I heard Dr. G say was Blah Blah Blah blahblah blah blah...
I was glad I had someone with me but was horrified that it was my 19 year old son. What a way for a child to find out that his mom is sick. Not that I had much choice, I didn't. I was still recovering from having high dose steroid treatments, and let me just tell ya the side effects, for some people, are ugly. I'm one of the lucky ones. It was ugly. I have a love/hate relationship with steroids. They worked wonders but I felt awful for a good 2 weeks.
Here's a little history:
It was May 21,2010. I'll never forget the day. It was my sons graduation day. It had been a pretty layed back day. We had all been out of school for a couple of weeks and just enjoying the beginning of summer at home. I had noticed some tingling in the very tips of my toes for a couple of hours. Not even anything major and honestly if I hadn't been sitting at home all day with no shoes on I probably wouldn't have even noticed it.
As I was getting ready to leave for graduation, the side of my arm and hand, down by my pinkie finger, started to tingle. I dint think much of it at the time. Earlier in the year I had been diagnosed with Carpel Tunnel. I had been holding a camera for a while by now so I just attributed the tingling to the combination of the two.
By the next morning both of my arms were tingling. By mid afternoon I was numb and tingling from the chest down.
After a few days I went to a walking clinic to see what was going on. I figured a walk in would be cheaper because I don't have insurance and didn't want to waste the money for them to tell me I was OK, no big deal don't worry. After several hours in the clinic and a visit from the local vampire to draw what seemed like a gallon of blood I left with no answers and a very large bill.
About a week later my tingling had turned into full blown numbness and my numbness had started to become increasingly uncomfortable, and I had started to lose some function in my hands. It was time for a trip to the ER.
Its amazing how fast things happen when you walk into an ER and tell them your numb from the chest down. I didn't know what the big deal was, why was everyone freaking out? I had a full set of neck x-rays and was headed to the MRI machine within 30 minutes of walking into the hospital. Turns out things didn't continue to move that fast. After waiting what seemed like forever a nice doctor came in to tell me "we" were waiting for a neurologist. WOW wait a minute, a neurologist? Why do I need a neurologist? Now I'm freaking out.
When the neurologist, Dr.G, finally came in he did a few test, made some faces, and scribbled some notes, and scowled some more. I knew this couldn't be good. He said I had Transverse Myelitis, went on to explain what it was and then proceded to gloss over the fact that this "could be a sign of something else" and I needed to have some more tests done. Another MRI, this time with contrast, on my neck and one on my head along with a lumbar puncture. BUT he continued to reassure me that chances are everything would be fine.
He told me I could do the high dose steroids if I wanted to but since it had been so long since the onset of my symptoms he didn't know if it would make alot of difference in the outcome. It was up to me. After doing some research and talking to a few people I decided to do the steroids. I'm glad I did/I wish I hadn't. Like I said before, love/hate. I swore I wouldn't ever do them again, but I will.
I had my two other MRI's the following week after all the drama, because I don't have insurance, they wanted me to pay for it up front. Well that wasn't going to happen, I don't have that kind of money. They did the tests anyway. I found out later that because of my "diagnosis" they couldn't deny me treatment.
My appointment with Dr. G was a week later and the rest as they say is history
Wednesday, June 2, 2010
Being A Parent...
...Sure was easier when my kids were younger.
Don't get me wrong I have loved being a mom to my boys every second of their lives but it is so much harder watching them deal with more adult issues and know that I can't just kiss their hurts away.
I so would not want to go back and do it all over again. The drama, the ups and downs, the he said/she. It seems like so long ago that I was there, but at the same time I can still remember it like it was yesterday. The pain of an ugly break-up, the endless tears from a broken heart. There's not enough money in the world to make me want to relive that and its even more painful to watch your child go through it!
I guess we all go through it at some point in our lives, and I know that no matter what I say to him it won't take away his pain just like my mom knew there was nothing she could do to take my pain away. We just want to protect our kids from hurting.
I know at some point in the future when he has a family of his own he will look back on his teenage years and remember this summer so he is able to help his own kids struggle through their broken hearts, just like I look back on mine, and my mom looked back on hers.....
Monday, May 31, 2010
Happy Graduation!
Well its that time of year again, my baby has graduated! I can not believe all my babies have graduated and are growing in to young men. Ryan will be joining his brother at ATU in the fall and I will truly
Thought I would share some pictures of his big day. He graduated with honors, as an Arkansas scholar, with an honors diploma, and at the top of his class. He was offered an academic scholarship, a Second Century Scholars scholarship, and a scholarship from the state all totaling over $25,000 a year.
I am so proud of you Ryan! You set your goals high and worked hard to reach them. I love You!
The only picture I have of me and Ryan and of
course hes making a face!
The three stooges, Ryan, Ramon, & Perry
Ramon & Ryan, they have been best friends since
the 6th grade. Its hard to believe they are all grown up.
The Gangs All Here
Jaden,Ramon,Ryan,Tony
Ramone and Jaden will be moving this summer out of state but they have been a big part of our family for many years and will be missed.
Wednesday, February 3, 2010
Snow!!
Its almost unheard of, almost. It snows here in the south, if you can call it that, on average of once a winter. We are more likely to have an ice storm than we are to have snow. But it has snowed twice this winter and and according to our local weather genious sometimes correct weather man we may have snow next week as well.
I was so excited to have snow, ya know real snow, more than an inch, that I ( when I say I, I mean my loving husband and I, because I was not driving in that mess) took these pictures.
I hope you like them!
I was so excited to have snow, ya know real snow, more than an inch, that I ( when I say I, I mean my loving husband and I, because I was not driving in that mess) took these pictures.
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