Summer Vacation

   Thought I would share some pictures from our *family vacation to Branson Mo. this summer. We had a great time, well most of us had a great time, poor Ryan was just a little over a month out from major shoulder surgery so he didn't have as much fun as some of the others.

   *The entire family. My parents, brother,sister-in-law, and nephew, my husband,myself, and my 2 boys

Josh havin fun on the go carts

  

Chris on the go carts

Darin (my little brother)

My Dad

Little Daniel

 



The sharks were crazy



It was scary watching them swim at us

Little D playin video games at the aquarium FREE

One of the few times Ryan smiled all week hangin with his G-momma (AKA my mom)

My little bro gettin his butt kicked at a video game

  



Bumper boats was SO much fun because it was SO hot that day



He looks so sad, I'm sorry Rynie

All in all we had a great time. We went to a couple of shows and spent some time shopping. Lots of eating but what  can you expect with 2 teenage boys! We road the ducks and enjoyed just hanging out and spending time together before Josh and Ryan left for school the next weekend and Chris left town for work.

I love you all!

Treasure every second you can with your family.

DENIED

   I can honestly say I don't think I have ever been so pissed off  aggravated,upset, disappointed (insert adjective here)!!!!


   If you have been keeping up with my blog you know since my diagnosis I have been fighting to get some kind of medical assistance. After lost paper work, wasted time on appointments, and months of waiting for a medical review board to meet to decide if I'm "disabled" enough to qualify for medicaid I finally got the letter in the mail I have been waiting for.


   Only it wasn't the news I was expecting. It was a big fat DENIED. Oh they were at least nice enough to acknowledge that after reviewing my medical records that I do indeed have MS, and that they understand I "may not be able to do the same work I had done in the past" I was still physically able to do "some type of work" therefore I don't meet the criteria of being disabled.


   So you tell me at what point in my day I am supposed to get said job that will pay enough to cover the cost of my medical care and my meds?


   I'm already taking the max dose of Amanadine which is supposed to help me not be so exhausted.That lasts all of about 4 hours then I HAVE to have a nap or I cant function. By cant function I don't mean "ya know a nap would be good about now" I mean I cant make a decision, I cant concentrate, I don't drive well because my reflexes are slowed, walking becomes even more difficult not only from the dizziness, but from the loss of balance and coordination and in extreme cases I have even been out somewhere and wondered how I got home because I don't remember it.


   My hands shake all the time, I have muscle spasms that cause me to drop stuff, numbness, trouble with balance, and that's all in the "good" part of the day. Not to mention my immune system that is now shot since starting my injection. I have had 2 cold/sinus infections in less than a month, and a tiny scratch, so tiny in fact, I didn't even know it was there until it got infected!


   (Don't get me wrong, I'm not complaining about the injections. I was warned before hand that a very real possibility would be that my immune system would be effected. That's really the whole idea to keep my immune system from attacking my nerves but the draw back is it also makes me susceptible to every infection on Gods green earth.)


   So friends...You tell me what employer is going to hire someone with my non-disability when they could hire someone without all the drama, and if I did manage to find this seemingly perfect employer what are the chances of it paying enough to A) cover insurance (keeping in mind I have a pre-existing condition so the already sky high premiums that I already cant afford will be even higher) and B) Making enough money to cover co-pays and deductibles C) me being physically able to safely work enough hours to keep a job without hurting myself or someone else?


   I realize I'm not the only person even diagnosed with Ms and that some people with MS continue to lead seemingly normal lives. Unfortunately even before my diagnosis I was having trouble dealing with day to day life I just didn't have a name for what was going on, and my symptoms continue to deteriorate instead of stabilizing.


   So I would just like to say thanks. Thanks to this so called review board, that has neither talked to me or seen me in person, for making a decision that effects my life so drastically by reading about me in a couple of medical files that are several months old.

Happily Hanging Out With Family

   So....

   I was in class yesterday and one of the other adult students in the class, one who...(whom?) I had seen out over the weekend, made the comment that I looked so happy when she saw me. That comment in itself was enough to make me smile.

   I was happy....

   This is why...

My whole family...

Plus one...

Was home all weekend.

And this is what we were doing.

Well not all we were doing. There was alot of eating and ALOT of laundry.

   This is the first time since Aug. that my boys and my husband have all been home at the same time. With both the boys in college with busy schedules, and DH working out of town it was great to have the family together again, even if it was just for the weekend.


    Have a Haunted Halloween!


  

Random Ramblings About Reality

   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.

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.

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!

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.

   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