It's OK!

Today is one of the few days lately that I feel that it is ok that I have to deal with having MS. My son made a friend this past school year and became pretty good friends. The boy was over at our house at least once a week hanging out. Then in June for my sons birthday party, his friend was over and we were sitting around talking about dogs. My sons friend, Zach, has 2 great danes. He was talking about how the dogs go crazy every time the UPS man comes with his moms medicine. I asked if she was ok and he said she was diagnosed with MS in April. My mouth dropped open. My son was speechless. (That takes alot) So we told him I have had it for 9 years. Later that night I called and talked to her and we have been phone buddies ever since. I have been trying to get her to go to my doc for awhile since the one she is going to was my first and was not helpful or positive is the first word that comes to mind. So today I get a phone call from my new MS friend saying she went to my doc and he wants to get her to the hospital for a new MRI and get her started on steroids. With everything she had to say about how she feels she has been declining for awhile. Her speech has gotten so bad in the past couple months plus her right leg is starting to drag. Now why her original doc hasn't done anything is why I left him. Just part of the processes of having MS he says. BULLSHIT!
Ok maybe that is how MS progresses but you don't leave your patient hanging out to dry and just say deal with it. She is really scared right now since this is still so new to her and really hasn't had a chance to take in the change that is going on wwith her body. I am just glad that I am here to help her with anything she might need. It is easy to be there for people when they need you but it is even better when you can really know what they are going through. With me going through the steroids just over a month ago I have a bit of info for her. I have learned alot from the other MS bloggers I have been reading. I am thankful I have come across so many of you out there. There are a few of you that have responded to some of my posts with comments that have been uplifting, full of information and just snapped me out of it when I needed it the most. Even though I have been battling with my own MS demons lately, today has woken me up to the fact that someone else out there is having it worse then me. This is when I pick myself up and get going to the way of life that I know is best for me so I can be there for the people that need me. If anyone has any info they feel is important for a new MSer to know, share it with me so I can give it to my friend. We are all in this together and together we can get through.

Tired of being tired

It has been at least a week of rain, heat & humidity here in IL. Only 10 days left of summer before school starts. I am so tired of feeling tired. I want to feel some energy to be able to do something with my son before school starts. This weeek I have been angry with my MS. It has only been 3 weeks since I started back with my Copaxone injections and I am sick of it. I can't even get a hug from my family without feeling sore. Plus battling with the weight gain from being on the steroids doesn't help. I feel there are alot of things we can adjust to make life with MS a little better but when you have so many issues at one time how do you get yourself out from under the rubble. I have always been a fighter and kept a positive attitude. My doc would tease that MS was to afraid of me with the stubborn headed Italian in me. This time the MS is winning. Up until a year ago nobody would have even known I had MS, I was doing so well. When I tried going to support groups they would look at me like I don't need to be there and I better not dare complain. I don't know about anyone else but I seem to get these (what I call) rain headaches. Since it has been raining for over a week now my head is about to explode. I don't know the last time I laughed or smiled. I don't want MS to define me but lately I feel like it has striped me of my true self. Of course you go to the doc & say something they just want to put you on an anti depressant. I am so sick of pills & shots. I'm just sitting here thinking, what would I do if I could have one day without MS. Interesting question. Anyone have an answer?

Fresh Air

Finally after weeks of hot & humid weather I was able to open some windows here at home today. The temperature was in the high 70's. We have three dogs and they love nothing more than being able to go in & out the screen door. That is only possible when the weather is nice. With the weather being so good I had a burst of energy and what did I do but clean my house and do laundry. ICK! It is supposed to be nice like this for the whole weekend. I hope so. That will mean some nice walks with my family & the dogs. Maybe some basketball in the backyard with my son, and the fire pit at night roasting marshmellows. I love these summer nights when there is a cool breeze coming in the windows. That is when I get the best sleep. Unless my youngest dog, Skyra, decides something has scared her and she jumps on the bed with me and practically lays on top of me. It's hard to get upset with her when she stares at you with those big brown eyes. We have had some pretty bad storms lately. So along with all the water we are also battling the dreaded MOSQUITOS. Between all the bites and me starting back on my Copaxone shots I feel like eventually I will turn into a giant welt. I'm going to enjoy the rest of my evening reading a good book with the breeze coming through our windows.

Parenting

I never thought parenthood was going to be so hard. My son is now 12 and going to be starting seventh grade in a couple weeks. I think the hardest thing is acknowledging that they are growing up and need to start making their own decisions. I don't think a child is going to learn unless they live and make their own mistakes. My son is at the age where every time you try to talk to him he thinks it is a lecture. Then again just when I think he isn't listening I hear him say something I told him weeks ago. Every year brings new adventures. My baby that would cuddle in my lap has now grown to 5'7" and 160 pounds and still there are days he wants to cuddle in my lap. I have said it before, I wish my mom was here for this. I need her advice on so many things. When my son and I talk about this he says grandma would be sitting back laughing saying "What goes around comes around." Yes, I wasn't the best preteen myself. I have learned to try and let the little things go, like him wanting to grow his hair. Letting go so your child can fall once in awhile to learn by their mistakes is not the easiest thing to do. I try to give him my best advice and let him know that no matter what choice he makes I will be here for him. I want to hold on forever. He is already talking about going to college and what career he wants to have when he is older. Again where is the little boy that would make me pizza out of his playdough set or when I couldn't find him he was hiding in the kitchen cabinets. We need to cherish every moment we have because we only get one chance. I want my son to have good memories of me and him. I couldn't be prouder of the young man he is becoming.

The amazing 4

I don't remember how I came across this story. There are 4 guys that on August 1st set out on their bikes to travel from Washington to Maine. You might ask what are they thinking? They are doing it to raise money for research for MS. The names of these amazing guys are Devin Petry, Karl Miller, Donald Fraser & Mason Calwell. I don't know if they will reach there goal but one thing I am sure of is that they will definetly be raising awareness. So many know what cancer, alzheimers and many other diseases are. Multiple Sclerosis is still such an unknown to people. When you tell someone what you have they look at you funny because they just don't know. Back to the real story. Check out these guys on there website and see if they are going through your town. Send them an email and let them know you are cheering them on. I wish they were coming near my town because I would love to be able to give them a nice place to sleep for the night or a good home cooked meal for what they are doing. These guys are sleeping in tents. I am so impressed with these four. I am going to send them an email myself but I hope they truly know how much this means to so many of us with MS. Let's help these guys reach their goal. Send the story to all your family & friends. Good luck to the amazing 4!
www.biketheusforms.org

Frustrated or thankfull

So today I am battling with frustration and thankfulness. Since I can't work a full time job because of my MS I work part time at night from home making phone calls for the Vietnam Veterans to set up donation pick ups. I get paid for every pick up that actually happens. Plus I need to meet a quota every week. It is not that easy. People can be pretty nasty on the phone and it is hard to stay cheerful. So now the company I send my work into is saying they aren't getting it or it is in to late and I am not getting paid. This I find frustrating when I am trying to get a child ready for school with supplies, clothes and physical (he needs it for sports). Plus along with the medical bills I have from my recent battle with my MS and still paying for my husbands bills when he unexpectantly had to stay in the hospital last year for three days and have surgery. I am thankfull he is now well, I am thankfull that I can bring some kind of money into the house to help. I am thankfull for being frustrated because that means I have a home and the bills that go along with having a home, so we have a roof over our heads. I don't know how others with MS can make it. Is there some secret I haven't heard about. How can people survive, with all the struggles they face every day because of this illness we have been so lucky to receive. (ok that was a bit sarcastic). I don't think I ask for much. I just want a job that can contribute to the household and is part time. Doing it from the house would be ideall but I know that is a long shot. I feel like I have let my husband down. He works so hard to provide for me and my son.(technically his stepson but they both hate that word) Then you get disappointed that your not providing the best for your child. It's not that I want him to have stuff but I want him to be active in school & the community. I say my prayers and wait for the answer..................
I'm still waiting.

Understanding

How do you get someone to understand what you are going through medically especially when they are your family. I have had MS for 9 years and for the most part I have been pretty healthy. There have been my limitations and my bad days but lately with my latest exacerbation my family seems to look at me like why are you acting like you can't do anything , why ar you so down and what is the matter with you. Sometimes my biggest frustration is with my family because they seem to forget themselves that I have this disease. I want my home to be my safe place where I don't need to explan all the time why I can't do something. Lately it doesn't seem to be that way. Is this asking to much? I don't know anymore. I do know that I have lost my spark and can't seem to find it. I used to have so much fire inside me that nothing would get me down with the MS. I would get up in the morning and be thankful I woke up to another day. Now it is such a chore to even get up. It is like what for it is just going to be the same thing. My doc says it is all normal. I don't want to be that normal anymore. I used to love life and be so carefree. I would be silly with my son. Now I am so uptight I can't stand being with myself. Can't even remember the last time I even really looked in the mirror at myself. This road I am on is just going in a circle and I need to find my way off. I know there is always going to be ups & downs in life, I don't expect things to be perfect. Up until now I wasn't really ever defined as the person who had MS. But lately with my latest exacerbation that is all people talk about when they see me. I want to be known for something besides the MS. Does ayone else ever feel they are defined by something they would rather not be? If my mother was here I'm sure she would be telling me to knock it off. After she gave me her hugs and words of wisdom. Life is so unpredictable. That is something I love about it and hate at the same time. Enough with the self pity. Time to make some changes.