Asking for help.

This disease really puts in perspective how controlling I really am. When I know longer have control of whether or not my legs want to work from one day to another, or if it's going to be a good or bad day. I try to take it with flexibility, but some days I just want to scream.

FOR EXAMPLE:

Today I wake up, and I can't hardly walk. My legs feel like jello, and using my walker is being my main mode of transportation for the day. I get up and I try to fix breakfast for Eric and my mind is all over the place.

The words of my physical therapist ring clear today. Use your abdominal muscles, find your center. HA. Yeah, that didn't work. I can't balance long enough to even think about contracting my abdominal muscles before almost falling over. All during this, I am trying to prepare his breakfast before he goes to work, and his lunch so he can eat it at work.
                       
                        (hint: multi-tasking doesn't work when you can't walk with a brisk pace)

I finally get everything under control in the kitchen long enough to sit down and enjoy breakfast with Eric before he leaves for his 24 hour shift. I then realize, oh shit he's going to be gone for 24 hours. How am I supposed to feed/walk/etc. for the day if I can't even walk. Yep, panic mode sets in. I am alone for the day with major issues. As he leaves I prepare myself that I have to get this done.

I try and I try to not ask for help, yet I still did. Eric had to come home because I was increasingly falling and basically was a ticking time bomb for a disaster. I absolutely hate that. I couldn't even do basic needs when it came down to it.

Do I feel like a failure? Yep, sure do! I will have many failures, and i'm going to need to ask for help as the years go on. Also with my failures, I will have my successes. Today just isn't my day for a success. It's another day in my world, and each day is different. Whether it be a success or failure, I at least know I tried. Hey, at least I didn't end up with a broken rib before I asked for help this time. ;-)

Fear is my own worst enemy.

Most people ask me what is my most debilitating symptom of this disease.

--If you asked me about 6 months ago it would have been losing the feeling in my leg.
--4 months ago it would be my cognitive impairment/seizures
--2 months ago it would have been my speech
--now, I know that the most debilitating symptom is fear.

Fear is by far the one thing that makes me make irrational decisions, keeps me up at night, makes do the "what if" question time and time again.

I just had my most recent MRI last week and it's been challenging to stay positive and not let that fear take hold. All my neurologist had to say was, "Well it's not good news"

That in itself makes it rough. That tiny little phrase made me go into panic mode. I basically cried myself to sleep and just said why do I even try.

I am currently not taking any medication for my MS. I am so afraid about the long-term effects that my doctors and there is a lot of them all in agreement that I am a little far off from needing the medication and the long-term effects do not outweigh the cons of my MS.
Yes, could I wake up tomorrow and never walk again. Absolutely, but do I want to live my life in constant fear of the "what if's:" or do I want to live in fear that this medication which has been proven to increase risk of aggressive cancer come and bite me in the ass in 10 years. Sure some of you may ask I would rather be walking and take that risk. I say, there are mobile aids that help me and if not walking is my worst symptom I am willing to take that chance over having an aggressive form of cancer, plus i'm sure insurance doesn't mind that decision either.

I am frustrated by the constant fear that is instilled in me. My short-term memory is shot, I can't even remember what I did 10 minutes ago let alone what I ate this morning. My long-term memory isn't bad. Right now, but i'm sure that will change with time. My speech is finally back to normal, but my fatigue and right leg weakness is getting worse. I.E. More falls.

Anyway, my focus is being taken away. More later. Maybe I will try video blogs, writing definitely seems to be getting worse and worse.

Best Wishes.

Handicapped?

It's been about a week since I have gotten my dreaded handicap sticker. Yep! That big ole' blue hanger that sits in the dashboard staring me in the face every time I get out of the car. It's a little depressing, but you know I have gotten over it. I suddenly don't care. I have come to accept I have this disease, it's not going away anytime soon, and I need things and people to help me. 

From the beginning I have said to Eric, they will have to drag me to the car before I get a stupid handicap sticker! There are far more people worse off than me, and I don't feel as if I am at that point yet. 

REALITY CHECK--I am. 

This sticker has helped me not have to walk from the back parking lot hoping I don't fall on my face into the hard pavement. It means less time in the heat, which ultimately makes my symptoms worse. I just had to wake up and realize this disease is apart of my life and I need to learn how to deal with it. 

Now, the handicap sticker I thought was going to be the worst. I was wrong, I just got my first cane, and looked at "fashionable" canes. Never thought that would happen. Never really wanted that to happen, but again alas it has happened. Now that it has, I am living with it. It does help me walk easier, and I have come to realize the sooner I accept it, the sooner I can forget about it. 

I never thought I would need these things.

Sure, it makes me sad that I do need it. 

Yeah, i'm upset that people look at me and say, but your so young! 

--For now, i'm just going to keep looking up and say at least i'm still walking, and staying strong. Thank you all for the support. It means a lot! 

Exposed

So,

i'm exposed. I am coming out to people that I have this disease so people know what I am going through when I don't pick up the phone, or unexpectedly cry, or just having a bad day. It's one of the hardest things I have gone through, and I have been through some challenges and there are only more to come. So just be here with me as I take it day by day in writing about these challenges that I have. Enjoy my funny stories and laugh with me, cry with me in my bad moments, and just giving me advice would mean the world to me. You may not have to know much about me to support me, and I could use all the support you are willing to give.

Thank you all in advance,

Kierston

Challenges with Insurance

The challenges with insurance have been ongoing. It's so frustrating that there are tools and expertise in helping with managing this disease, but I have to go through this maze of an insurance company to get any of it. I am starting to regret my decision to vote for the Affordable Care Act, and Obama just because all of these things including a home nurse, durable medical equipment, increase in copays on disease-modifying drugs are either non-existent, my insurance won't cover, or it's too damn expensive.

As most of you know I have been having some major cognitive issues, and I am in need of some serious help when it comes to daily activities. Having this home nurse would be more than beneficial for me. Although, according to our insurance, private home nurses are not covered, and as a "favor" they would give me 4 hours of home care a day. Are you KIDDING ME? A favor!??! You think I asked for this disease, and now you think you are doing me a favor??? All i'm asking for is 12 hour care 9 days a month. That's it. It's actually LESS than what they were going to give me, but because I only need it on days that Eric is working, but  I need it for more than 4 hours in a day they deny me? Please tell me if you have a rational reason for this and maybe just maybe I might not get as pissed about it, but from where I am standing it doesn't make a whole lot of sense.

Next denial on the list. They denied me another MRI, because my cognitive issues do not explain another exasperation or a stroke so there is no need for an MRI. I would like to know who made them a doctor and put a M.D. after their name. It's a freaking MRI! I have Multiple Sclerosis that effects the nerves which are in my brain and down my spinal cord, you can't just look at me and say, "oh well, she doesn't look like she has had another exasperation."  You need an MRI to confirm diagnosis, because oh yeah insurance won't do a damn thing without a confirmed diagnosis. No medication, no further testing, no nothing. It's like a catch-22. I bet somewhere in some office they are just saying well if she doesn't get an MRI, we can't confirm, and if we can't confirm then we won't approve any other treatment options.

So these are my woes for the days? What are yours? Do you guys have any suggestions for me? Ways to navigate the insurance maze.

Thanks for reading!

Memory Loss and Multiple Sclerosis

So as most of us MS'ers know each every one of our disease processes are different, and why it's more often that not coined the "snowflake disease" because each and every presence of MS is different. Well my "different" is my memory loss.

 According to my neurologist the reason for my memory loss is there is a part of my nerve that is affected in the gray matter in my brain, causing memory lapses, or in my case just downright crazy Kierston. I literally forget where I am, most people that I will come in contact with, I will have no idea who they are.
If I ever wanted to forget a situation, this would be the most ideal situation, but right now I don't have too many things I wish to forget.

Let's throw out a few examples:

We went water walking, and I went to go get changed and came out, everything was fine. Although neither me or my significant other was prepared for what came next.

                                                          I lost my memory

Now, for most MS'ers it's usually just a fog. Maybe like you might forget simple details, but for me it's like that event never happened. Questions I am sure I asked Eric:

1.Why am I here?
2. Why am in a pool?
3. Why am I wet?
4. Who are these people around us?

Yep, this was the least of his worries. I put my stuff in a locker, and I didn't know where my locker would be with all of my belongings in it. I am in a room with a few hundred lockers and I put my stuff in one, with no identifier. Great. Well, apparently there was a nice lady that helped me find my stuff. All I can remember is I told her I had a white fluffy jacket. Thank GOD she was smart enough and nice enough, hell patient enough to help me in finding my things. Here I am, this distraught 24 year old woman, crying in the bathroom in a wet bathing suit. I bet most people would just walk away, but I wish I knew who she was so I could thank her. Now, you would think this would be the end of my memory loss escapades. Nope, nada. niet. I still needed to take a shower. This part will be short, because I don't remember anything about this occurrence. Basically I must've fell because now my hip hurts, and if I go to the doctor he is going to ask how it happened, and I am going to be like, yeah don't ask me that because I have no idea. Can you fix me? That should go over well.

Well, this is one of the many things going on with me. Fellow MS'ers what about you? Any strange and telling symptoms you have and you feel like your alone? Place in the comments section and tell me all about it.  

Upward battle...

Being diagnosed with Multiple Sclerosis is a crazy ride, but I don't really have a choice getting off this ride. It's new everyday. Some days I feel overwhelmed because so much is going on, some days it like there is nothing wrong with me.

Today is not one of those days!

I have been having seizure like cognitive issues (Eric likes to call it bizarro Kierston) and of course I don't remember anything about anything during those time periods. Also on the menu for crazy symptoms is I am having trouble talking, like stuttering almost. It's quite frustrating especially when I want to get something out. For instance, when Kia is doing something she shouldn't be doing and I can't just say, "Kia, No!" it comes out more like. "Kkkkk-iiii-aaa, no! " Yeah, now tell me that's fun. Also this cramping in my foot has go to go away. I have Baclofen (an anti-spasmodic) but am I allowed to take it, yeah that would be a big fat NO! Why you ask, oh well great question. Let's answer that.

So on December 25, 2012 I was diagnosed with an Exasperation of my MS and was given Solu-medrol, and a lot of it. So this medicine basically slowed down my liver, and now well my liver is struggling. So no more "unnecessary" medications for Kierston. Last time, I checked when my foot cramps so bad it folds over I don't see that as unnecessary, but try telling my doctor that.

Oh well, today would be considered a bad day. That means lots of rest and unfortunately no fun. See you soon bloggers.