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Tuesday, November 22, 2011

Brain Scan

Today, I am scan my brain for the topic I wanted to write about, but am coming up short. The brain farts return! that is why I chose the name Brain Farts for my Ms Walk Team. It was for so many reasons.

#1) I want people to laugh, and it is hard not to laugh when you hear that phrase. People find it unexpected. that is good because it helps to lower their inhibitions and they feel less anxious or awkward as they hear about MS. This way they can relax and let their questions flow or at least hear what I have to say about MS.

#2) People can relate to a brain fart. I lead with that when I explain the name. Everyone has had a brain fart. It's that moment where you know what you were going to say or do and you completely lose it. You feel off balance, you feel a little silly or even dumb, you think "I just was thinking of doing this. How could I forget so easily?" the difference between the everyday person is their brain farts are occasional. With MS, we can experience brain farts weekly, daily, even hourly.

#3) I want people to remember me and MS. The Brain Fart Team name is unforgettable and if people remember the name, maybe they will remember what they learned and also the feelings behind the message.

I try to be very approachable about anything in my life and I maintain that with MS. Ask me anything, and I mean anything. Be prepared, that what you ask will be answered. I am blunt, I am honest, I am patient, I am funny and I am candid. I believe in asking questions. One of my favorite quotes is "The only stupid question is the one you didn't ask.

People tend to keep things inside rather than express themselves. Most out of fear of rejection or humility. Most people are not mind readers and most people are not trying to hurt others. People do things without thinking and often have no idea how they have hurt someone or how their actions are perceived. I will hear a friend talk of how someone didn't call or they don't hear from them anymore so they intend to cut their ties with them. My first question is always "Did you try calling them?" or "Have you told them how you feel?" 9 times out of 10 the answer is "No."

If a relationship is that important to you that you are that hurt, it is worth the time to ask the question. Even if the result is the same and ties are cut, you will know you tried to be honest and you will have no unanswered questions. I had a friend once say that during a flare her best friend and her mother hadn't called her or checked up on her and she was so upset. She felt abandoned and alone. She was really hurt. I asked if she talked to either of them about how she felt. No, she didn't. Why should she be the one to call? My answer was "I think a best friend and definitely a mother are worth the effort."

I once asked my mom why she hadn't called. She told me she's afraid that when she calls it will be the one time I finally fell asleep. Or I will feel obligated to talk out of being polite rather than speak up and take care of myself. I told her and anyone else in my life, don't hesitate to call or text me. If I am busy or don't feel up to it, I won't answer or respond.

In general, people aren't trying to be hurtful or even neglectful. We have to remember that the people we love also have their own lives and problems. it doesn't mean they care less about us. Other reasons people will pull back is they don't want to burden you with their own problems. They are afraid for you and don't know what to say. Or others just can't handle knowing someone with MS or another major disease or ailment. Fear is a powerful thing.

Speak up. Tell others how they are making you feel. Tell them why you are hurt and what you need from them. Educate them about MS. Not everyone knows what it is, how it effects people and what they can do. Before I even was diagnosed, I knew very little about MS. I knew Annette Funicelo & Richard Pryor had it. Those are extreme cases, maybe progressive. I have never stopped to research exactly. Then their is Montel Williams who has stepped up to educate the nation about MS and pain management. The problem with these celebrity examples is they paint pictures that don't show the whole story. Annette was not born in that wheelchair. Look at her movies and how vibrant and alive she looked and was in her youth. She aged with her body and MS aged with her as well. We don't know her journey by sight alone. An Montel, if you just look at him, he looks healthy and fit. He seems like he is ok and "normal" even. but as my poem said "Seeing is not always believing" .

Teach your family and friends. Ignorance is not stupidity or even a lack of caring. It means they have no knowledge or true understanding of the topic. We are the catalyst in many people's lives. It does not mean we have to become a full on advocate, unless you want to, but we should offer the basic info and patience for our loved ones. After time, you may realize some of them will never get it and some do need to be cut off. Please. Do yourself the favor of asking the questions YOU want to know before you walk away. You may be surprised to learn that your feelings were not the result they intended.

Be brave. Be honest. Be informative. Be patient. Be loving. Be good to you and your body. Do a Brain Scan and find what you need for your body, your heart, your soul and your mind. You will be glad you did.

Love & Kisses, Tammy

Monday, November 14, 2011

Claudia's Comment (My Reply)

Claudia, You should contact your neuro ASAP. What you said in "MS Pit Stop" it is not normal for numbness to spread that quickly. I understand your hesitation due to too many prescriptions, but ultimately you make that choice. Most likely you would get IV Steroids to help stop the MS Flare you are probably in right now. Keep an open communication with your neuro. It is very important that you both discuss what meds are needed and which are optional. Which treatments are necessary and which need to be discusses. you are allowed to be scared or nervous, but not allowed to ignore things & hope they go away. Please take care of yourself! ~Tammy

Amnesia Wishes

Hello Everyone, Recently my husband & I had been having trouble communicating. During the remodeling of our home, I was pushing myself too hard. Shocking I know. I would, however, ask for help with some things from my husband or my children. This wasn't always met with the greatest enthusiasm. It was to the point where I didn't even want to ask because it was easier to just do it myself rather than deal with the sighs or complaints. When I didn't ask, I'd hear, "Why didn't you ask for help". When I did ask, I'd hear, " Why can't you do it?" or " Really? Right now?" or the resentment would be evident. Eventually, little fights would start or passive aggressive behavior.

I would sit down with my kids, but they are kids. They don't walk all over me normally, but with all I was doing, my normal disciple tactics went out the window. I would remind the kids that one day I would be finished & I will remember this. ;) My husband & I had 4 separate conversations about how I felt overwhelmed and abandoned by him during the Summer. I knew he was overwhelmed & creating even more stressors in his mind. I was losing sleep and working on this house round the clock. Each time I spoke with him he told me I was right & he would try more. It was fine for a while, but the pattern would repeat.

Recently, it began again & we had a bigger fight. When we finally sat down to talk, we had a break-thru. I came to this Epiphany. My family is fine with me doing everything as long as they don't have to see me and my body suffer because of it. When they see me and what MS does to me, they feel badly, especially when they could have helped to prevent it.

To be fair, I helped bring my family to this point. I am stubborn & I am sure I can do most things better. I have created my own little monsters. I told them as much as I need their help physically, I also need their patience. I need to learn to pace myself on things I want to do myself and to delegate other tasks to them. I need to teach myself to let go & they need to help me do it.

It is often easy to only look at one side of a story. Especially when that side is your own. Sometimes we need to step back and see the whole picture and how we all fit into it. It was very easy for me to see how "no one was helping me", but much more difficult to see how I helped them all to do it so easily. I need to take responsibility for my role too.

I have started to ask for more help, to delegate and slow down. I also, am calling out my family when they try to stay in old patterns. For example, after straightening up the house, my husband brought in the mail and put it right where I just threw away a bunch of flyers and junk. I said "Why would you do that?" He said, "What? I don't know what you want me to do with the bills." (I pay all the bills.) I said, "C'mon! There are not even any bills in here. This is what I am talking about. This is how you put more on me." My family can generalize so that I have more to do and they can explain away their guilt.

We are making more progress, but it is a process that requires baby steps on all of our parts. Especially on my part. I need to speak up more and stand up for myself. They need to speak up when I am becoming the martyr and not being fair to them. In the end, taking about it and letting them know how I felt and hearing how they felt was the best solution. Sometimes we need to gain some perspective in order to make differences and see how to improve our relationships. Even though my family & I wish for MS Amnesia, sadly that is wishful thinking right now. However, harmony within my household isn't.