My Sad reality check

            Warning: the following content might make you depressed (I know it depressed me).

So I have noticed that compared to a few months ago I am walking 87 times better than I was. Such a positive note to start on I know. That’s the end of it, here comes the Debbie Downer moment. My whole upper body is slowly getting worse day by day. Every muscle and bone is on fire in my arms, legs and hands. My hands are so weak and shaky that to even type this is taking 3 times longer. It is hard for me to guide my fingers to where they need to be. Grabbing smaller objects like pens and utensils are harder than grabbing cups and larger objects. The downside to being able to grab the larger stuff easier is being able to keep it in my hands.  My vision is getting blurry as well and I feel a bit disoriented at times. A lot to deal with and I never asked for it.

                I met a woman at work yesterday who came in to visit her father. She came in a motorized wheelchair, I could tell just by looking at her that she was in it due to the same shitty disease. We started talking and she confirmed that she did in fact suffer from MS. I got so sick to my stomach at that moment. This very nice woman was older; I would guess around fifties and was diagnosed years ago. I get so depressed on a daily basis just dealing with it now but seeing people like that reminding me this is my life, my sad reality; and I have another 40 plus years to live with this makes my head spin.  As I sit here typing this, my head is literally spinning. I am so dizzy it is making me nauseous. Every little eye and head movement is dangerous. I still have to trek it to work tonight and take care of my kids right now. Even though this is all going on around me I still look good! J

I love My Sons!

I have said it quite often; my kids give me the strength to want to fight Multiple Sclerosis. Well today my sons wore momma out. I have to say that the past couple of weeks I have been feeling half way decent; despite all my stress right now. I worked the last two nights and they were oddly busy nights for me. I woke up this morning vacuumed my house, washed floors, and did dishes. After all of this I am pooped, but silly me started using my brain and decided to take the boys to the park. Apparently I had this thought out loud so Anthony heard it and we all know once a four year old hears park it better happen or else.

                So after Danny woke up from his nap off we walked the five blocks to the park; skates in tow. Once we finally got there I put the boy’s skates on and off the attempted to go. It was Danny’s first time on roller skates and Anthony’s second so I had one on each arm. It was so cute to see them both try though. They truly make me happy no matter how I feel. The little one wanted to hold on to his big brother’s hand instead of mine. They both spent more time on their butts than upright. Priceless!

                Now why would someone in my condition go out in almost 90 degree heat with two little kids to the park alone and put them in skates? I have no logical answer for you; I blame it on the MS. My mind is not where it should be. Then as we all sat there sweaty, hot, and tired mommy realized we had to walk the five blocks home. Oh and I forgot to mention the last three blocks are uphill. On the way home my older son is complaining about having to walk and wants to go get the car…at home…which we had to walk to. Anyone getting this? Yeah he wasn’t. We made it though and now my back and legs are killing me. Pain well worth it for my sons though! <3

MS tidbit

               Ok so the way I describe MS to people is that my immune system is attacking my central nervous system. Essentially it sees my SNS as a virus and is working so hard to get rid of the virus it is eating away at the myelin covering my nerves exposing them which is why everything goes crazy numb and why I always have some sort of pain. The one good thing about this whole disease is because my immune system is working so hard I guess; I tend to heal unusually fast and very rarely get sick. Don’t get me wrong MS still sucks big time. Surprise, I’m sick!

                I have a head cold and I’m not happy about it. For me to get to a point where I am in bed and on antibiotics it’s bad. Even though I am ALWAYS complaining about how crappy I feel, when I get sick like this it’s even worse. I hate when my throat hurts more than anything. Let’s add the fact that my ears are clogged and my hearing is now even worse because of it. I am one big baby. I am so uncomfortable it’s not even funny. I went through a box of tissues in 3 hours.  And there is nothing on TV. Being sick in the summer sucks…waaaaaaaaaaaa! Any chicken soup will be very much appreciated thank you.

More Stress!!

                I don’t write to complain (well maybe a little), I write to inform. There are so many people who have so many questions about Multiple Sclerosis; I am definitely one of them. I am also one of the thousands of people living with Multiple Sclerosis. I decided to document my struggles and obstacles I face and try to overcome with this disease and believe me there are many. I have only been “officially” living with MS for just under two years. What a long two years it’s been. I have not had more than a day or two of relief here and there and as I write it is not getting any better. I have been writing about all of my aches, pains, and tingles as well as all the stress and issues that lead me to said aches, pains, and tingles.

                One of the biggest issues I have been having lately is trying to get my medication covered somehow; three months later and still no luck. As I said I still have tons of questions about MS and as I have come to find out so do the doctors I speak to. I have been without my MS medication for three days now and tonight it is starting to hit me. I had to leave work due to a useless right arm, facial numbness and right leg numbness. Unfortunately it always seems to be the right side of my body and I happen to be a righty. Some doctors say that not taking meds for a short time won’t affect you that quickly…wrong! I want to meet a neurologist who is living with MS as well because I am sure they will know exactly what I mean. MS is so annoyingly and predictably unpredictable.

                The pain and weakness that is taking over my body again is really getting annoying. I have to deal with this for the rest of my life and I’m only 32. Hello major depression. Everyone says to be strong; I have kids to take care of. Screw you I am tired of being strong. I am tired of looking good to cover up the pain. I am tired of not sleeping at night because of MAJOR stress about my life right now. The truth, the truth is I am screwed! I stay awake every night wondering how I am going to pay bills and feed my kids because I can’t work the way I need to. I am tired of being sick and tired. I don’t want to hear how strong I am or need to be or how God only gives us what we can handle. This tough love crap does not nor has it ever worked on me. I am not strong and God I cannot handle everything you have given me lately. I am ready to turn my back. I am about to give in and make a deal with the devil. I am pretty sure the drug and insurance companies have because this whole process is hell lately.

                My face says it all; no matter how much makeup I put on. I walked into work pale, dazed, and very slowly. Everyone who looked at me could automatically tell how I was feeling. I left work early and a fifteen minute drive took me almost forty-five. As I was driving I had moments of confusion where I would zone out. I am thankful I didn’t get into an accident. I was not under the influence of any drugs or alcohol and I felt like I was. I still feel like I am. This is not good. The only thing to do is go to bed and get up every morning, make breakfast for the boys and continue on with my life like I have been for the last 32 years. Time to say see ya for now cause my fingers and wrists are on fire.

My life Sucks!!!!!!!!!!

                 My life totally keeps getting worse. I dread waking up lately. It sucks! We all know the shopping list of issues going on in my life. Financial, marriage, my mother’s health, my kid’s health, my health, work. I will not go into any further detail with the list. The one thing I am revisiting is my meds; or lack thereof. It has been three months now and I still cannot find a way to get them covered. Husbands insurance stopped covering and my insurance is nonexistent. I applied for the patient assistance program through the drug company that makes the meds. They were able to send me a month of medication as an emergency and I also was able to get a month’s worth from my doctor’s office. Well here I am today with no more because the drug company has been dancing around with me on the application process and now I find out today that it was rejected due to lack of information that they actually had. Here we go again from the beginning. I have to fill out a new application and send them everything again! I am not a happy camper right now.

                Why is it so easy for crack heads to get Medicare, food stamp, section eight; etc? They are apparently more important to take care of then people with crippling diseases. Yea right these are the ones I want to save, the wastes of life that don’t want to get off their asses and do anything with themselves. Its things like this that make me the extremely bitter person I am today. I have two kids and a husband who works. I have a job of my own. I wake up every day and do all the normal daily housewife things that millions of us do all the time. The difference is it takes a little more from me to do it. Then we have all of these “fabulous” people walking around high on legal and illegal drugs and we are paying for it. I am robbing a bank tomorrow so I can pay for my medication to keep the feeling in my legs enough so I can stay upright.