Memorial Day

Published May 22, 2015 by Courtney

Life is insane. I have been so beyond blessed and sometimes it is hard to see that in the midst of everything else. Memorial Day is celebrated this coming weekend and it is a time when how blessed I am just jumps out at me. Yes, I might miss my husband a lot of the time. I feel alone and stressed whilst taking care of the kids. But the fact that we don’t have to visit his headstone this weekend makes me so happy and so sad for everyone else who does have to visit their loved one at a cemetery. For all of those who love someone who sacrificed it all I thank you and so do my children. There are no words to quantify the gratitude and debt this country owes you.

This weekend try to remember that it isn’t about bbq’s and family get togethers. It isn’t about all of the current service members or those who have served. It is about those who have given all for this country. For us and our freedom.

The Pressure To Be Physically Perfect & Imminent Failure

Published April 24, 2014 by Courtney

The Pressure to Be Perfect

Society places a huge amount of pressure on people to be “perfect”, or at least their perception of perfect. The media also places pressure on people to be physically perfect. Those two entities can place a huge burden on someone to be what they portray as perfect. While that pressure can become crushing it is nothing compared to the pressure that we put upon ourselves to be perfect. I realize that men face this pressure but I am writing about the pressure put on women and girls in our society.

I am not a huge royalist by any means but I think the Catherine Middleton, the Duchess of Cambridge, is an amazingly beautiful woman. She is graceful and poised; she dresses modestly and still manages to look beautiful and sensual when it is called for.  I visit an amazing blog that is dedicated to her fashion and her public outings and the patronages she tries to help bring awareness towards. The Duke and Duchess are on a tour in Australia currently and reading the comments on the blog about her makes me very sad.

Nothing she does is good enough. If her skirt is above her knee they claim she needs to lengthen it, when she lengthens the hemline they say it is too matronly. When she wears high neck outfits it is too matronly, when she lowers them it is too revealing. If she leaves her hair down it is unprofessional and when she wears the same pair of high heels she isn’t representing royalty correctly. I cannot imagine having my every move picked apart and judged by the media and women all over the world. The weight upon her shoulders must be immense all because she fell in love with someone in line for the throne in Great Britain.

The pressure to fit the societal definition of the perfect woman is an impossible goal to reach. That doesn’t stop women, myself included, from trying to meet it anyway. When I look at myself in the mirror I don’t see the good things about myself, I see all of the things that, according to media and society, are wrong and ugly about myself. I know a huge part of that is my own lack of self-esteem, but the pressure from outside sources amplifies it.

The pressure trickles down from society to the women in the world and I have started to notice that pressure trickles down to our young daughters. It isn’t something that we do on purpose or even realize is happening until it is too late. When you see your daughter sucking in her belly or saying she doesn’t like a shirt because it shows her fat rolls it makes you realize just how pervasive it can become.

I watched a news segment the other day about a new problem facing the young children in America. A problem that doctors are not prepared to deal with at such young ages. Anorexia and bulimia are becoming a much larger problem in girls starting as young as 9. The drive for physical perfection is making it so that little girls who should be playing with their friends are more concerned about body fat.

For me it doesn’t matter how often my husband tells me that I am beautiful and desirable. It is something inside of me that is broken or skewed. It is something that I need to fix within myself and realize that my self-worth isn’t dependent on my weight or the size of pants I wear. It is so very hard when everywhere I look I see women on TV, magazines, etc. that have more abs than a lot of men. Not only do I need to stop thinking this way for myself, I need to stop thinking this way for my daughter. I don’t want her to feel this way about herself.

We tell our children that it is what is on the inside that matters and makes someone beautiful. In our world on instant gratification and social media it is hard to escape it. Our children are already growing up way too fast and this is just making them grow up more quickly. I think it is a big problem that has the possibility of becoming a HUGE problem if we don’t try and change things.

The problem is that I don’t know how to fix it for myself, let alone the rest of the world. I don’t know what to do to convince myself I am beautiful, or how to just be happy and content in my own skin. I just know I don’t want my daughter or my niece to struggle with hating themselves because they don’t fit the body mold that the world says is beautiful.

I think that being less critical of each other, including those like Catherine Middleton, is a good start. I feel that if people are picking her apart that they are doing that to everyone they see on a daily basis. The insecurity and self-loathing are hard to deal with and I wonder how many of those women who pick people apart are doing it because they also hate themselves.

How do I convince my daughter that it doesn’t matter what she looks like and that she is beautiful no matter what, if she sees me hating myself? If I cannot be happy with myself? I guess this blog was to get my thoughts out there and to see if others struggle with the same thing. To get advice from those who don’t struggle with this or advice from those who do. I wish that I could love myself.

Letting the kids help

Published November 18, 2012 by Courtney

FYI Pics of MS Shot being given and needles. So skip if you are weirded out.

I have talked about caregivers and the MS sufferers but kids are a whole different story. They have to deal with so many things and emotions that are hard for me to process, let alone a 5 year old. I try to be as honest as possible, but I wish someone would make a cartoon video explaining it in kid terms that is attention keeping. To explain what it does to the body of the person who has it, but that they aren’t going to just die one day from it.

I try to be honest and let my kids help me with things related to MS. I started back on the Betaseron shots just last week, but before they have helped get the alcohol wipes out, a band aid, etc. This time they are far more interested and want to to know what the medicine does for me, since it doesn’t make the MS go away.

So I decided this go around they would each have a “job” to help me with my shot. I am on the Beta that you reconstitute so it takes a little bit longer. My kids are 8, 7 and 5 so the tasks aren’t real hard but they are helping mommy. I want them to get used to seeing me doing the shots again and not get scared that I am. I want them to know they can help me to try and be healthy as possible and lastly, that they are a very important part of my MS and they are helping with the shots to help.

They help more in other ways now as well around the house but the shots are a new thing.and they helped with the whole process, after using a practice kit. It took a little over two hours to set everything up and and do my shot and put the used needle in the sharps container. If I did it myself it would take twenty minutes or less, probably 15.

Here are a few pics of set up and putting old needles in  the sharp


There are a few issues when I do the shot, just because of physical limitations but I will give you a step my step with pictures of our long session of setting it up.

My oldest helped do several things, from setting the items up on the mat to timing the two minutes for reconstituting the meds. He also helped with the syringe and anything else I needed. He is my little man.

Middle child was in charge of the directions. Step by step he would read them out loud then show me the pictures and then shoe me on the mat what I needed. Step by step.

My youngest doesn’t love needles but will help with other things. (There will be an update soon because I had a huge reaction to the meds.) But I am going to put a few pics in of the kids helping me.


Okay so it will get more graphic as far as needles go.


Shot time! Cleaning my leg!


They did it! They were so excited. Next blog will cover huge allergic reaction to something with rash and all and a little but of positive. Here is a pic of them after they did it.




Caregivers need care too

Published October 23, 2012 by Courtney

The caregivers are often just as afraid, if not more, as we are. They see the pain and frustration we are feeling and yet they cannot do anything. I am going to link a couple site I found thoughtful and maybe some excerpts.

Some of report’s conclusions: some of the results are mixed. Children engaged in caregiving are not usually doing it alone and are participating in the same educational and social activities as their noncaregiving peers. There are indications, however, that some children are experiencing distress that is manifested in behavioral and school problems and feelings of isolation and sadness. Boys in particular seem to have more difficulties than girls. Children in minority households with lower incomes are under particular stress and report receiving less help in carrying out their tasks.

Suggested solutions are more general in nature and include ideas about creating services to assist child caregivers. The report ends with an extensive bibliography of related resources.

Caregiver Tip: It isn’t possible in every situation because family life is different for each of us and because life is harder for some than for others. However, to the best of your ability, avoid placing children in caregiving roles.

Caregiver Tip: Children who have family members with MS will wonder if they will get the disease. Be honest with children in a way that normalizes their concerns without giving them reason to worry. How to be honest while minimizing worry is something each parent must determine based on their knowledge of their child, his or her personality, and the child’s tendency to worry.

But I’ve dreaded this day.

I’ve dreaded the day when she would ask the question of her own accord because it means she is worrying about MS for herself. As we mature we lose a little innocence day by day about the world around us. The same thing happens when a child grows up with a family member who has a chronic disease. One loses innocence through exposure.

I wish she were still MS-innocent. But she’s not. Fortunately, she’s not a worrier.

The statistics are available and easy to report. According to The Multiple Sclerosis Gateway (created by Bayer Schering Pharma), “Children where one parent has MS have about a 3% risk of developing MS later in life.” The risk is 20-40% greater than the risk for the general population who have no parents with MS. On the bright side, that means there’s a 97% chance my daughters will never have the disease.

Stats are easy to report. What isn’t easy is the small dread that will always be a part of her life. Even if she doesn’t spend time worrying about it, it’s there hiding in the dark of negative possibilities. It’s something I think of everyday for both my daughters.

How did I respond to her question?

“You don’t catch MS like you do a cold when someone sneezes on you. You know you won’t get it from hugging or kissing Mommy. It’s not like that. I can’t say you’ll never have MS, but I can say it’s something you don’t need to worry about. The chances are so small. There’s a very tiny possibility but it’s certainly not probable. The chances are very great that you never will.”

I hate even having to think about this but I worry about my  daughter, and sons and if I have cursed them to the life I live.

10 tips for caregivers

Caregiving for someone with multiple sclerosis (MS) can provide an opportunity to demonstrate your love and commitment to that person in his or her greatest times of need, but it can also be challenging, exhausting, and stressful. All too often, caregivers — whether they’re looking after someone with multiple sclerosis, cancer, diabetes, or another chronic illness — put their own needs on the back burner, which can lead to feelings of depression, resentment, and isolation. But there is another way.

If you’re caring for someone with MS, pay attention to these steps suggested by the National Family Caregivers Association and the National Multiple Sclerosis Society. You need to take care of yourself as you care for someone else:

1.Educate Yourself
The more you know about MS, the more you’ll feel ready to face the challenges multiple sclerosis can pose. Learning as much as you can about the illness and the available treatment options can empower you to help your loved one make decisions regarding his or her care.

2. Connect With Others
Caregivers can feel as if they’re on their own, and that others just can’t or won’t understand what they’re going through. Networking with other caregivers, either in a support group or through online message boards and chats, can help prevent the guilt and turmoil that can arise when negative emotions surface. Talking with others can also help you see the situation from another point of view, brainstorm new solutions for coping with MS-related issues, or just feel that you’re not so alone.

3. Say Yes to Help
Thinking you have to do it all is a common mistake of caregivers. Instead of turning down offers of help or not following up on them, say yes and be ready to explain the specifics. Do you need someone to stay with your loved one while you go shopping once a week? Could you use help with transport to and from the doctor’s? A casserole or other ready-to-eat item for days when cooking seems out of the question? Whatever it is, don’t be afraid to ask. People often want to help but don’t know how.

4. Get a Guide
There’s no need to feel as though you’re sailing into uncharted water as a caregiver for someone with MS. Whether your MS caregiving question is small or big, the National Multiple Sclerosis Society has established a toll-free hotline — 1-800-344-4867 — staffed with MS Navigators who can help steer you toward the information or resources you need.

5. Give Yourself a Break
Caregiving is a big job. And like any job, it’s one you need a vacation from once in a while. Make a point of lining up occasional respite care, either from a professional or from family and friends, so you can take the time you need to rejuvenate.

6. Don’t Let Things Build
If the warning signs of caregiver burnout emerge — you feel hopeless or helpless, you have trouble sleeping, you lose or gain weight, you lose interest in things you once enjoyed, you cry or feel as if you’re on the verge of tears or are simply emotionally or physically exhausted — take immediate action. Getting help for these feelings early can help you avoid more serious problems later.

7. Don’t Deny Your Feelings
Allow yourself to grieve over the losses caused by your loved one’s MS, and also to dream new dreams about the future. If you’re struggling, talk about your feelings with a trusted friend, a member of the clergy, or a therapist. And be sure to speak to a doctor if you think you might be experiencing serious symptoms of depression or anxiety.

8. Take Care of Yourself Too
You’ll feel much more capable of handling the tasks of an MS caregiver if you take excellent care of your own health as well. When you eat a balanced diet, engage in regular exercise, get enough sleep, make time for hobbies or activities you enjoy, and schedule time for relaxation, you’re better able to tackle the stress of caregiving.

9. Promote Independence
Be open to technologies and ideas that allow your loved one to be as independent as possible. Not only will he or she appreciate the freedom to accomplish some things, but you’ll be allowed more time to concentrate on other things.

10. Trust Your Gut
What works for you and your family may be different from what works for someone else in a caregiving situation. Trust your instincts to lead you in the right direction when it comes to decisions about your loved one’s care.

Remember — it’s not selfish to take care of your needs too. Caregiver burnout doesn’t help anyone. By taking these steps, you’ll not only feel better but you’ll be a better caregiver all around.

This is a good one for those having a hard time.

THIS NEEDS TO BE READ BY THE HUSBANDS or other men caring for their wives, just remember we are supposed to ask for help and that means you can too.

Emotions are real and sometimes they hurt, but when we talk about the at least we know where the other is coming from.

Guilt — A little break in my SSDI rant but still fits in

Published October 22, 2012 by Courtney

I love my husband and children so much that I would do anything for them. I would die for them and most days I can’t even stand long enough to cook a full, good meal. I don’t do all of the good things a mother does because I can’t and besides anger, guilt is the other emotion I feel all of the time.

Guilt I will never be able to coach my daughter’s softball team because I can’t be in the heat.

That I will never be able to watch a baseball tournament of my sons or play outside with them any longer. There are so many other things and then we switch to my husband. This is from my letter to the SSDI and what he has dealt with already and he isn’t thirty and I will add what other guilt I feel:

 My husband, who had been deployed three times since my diagnosis, was scared. Most of my acute episodes had occurred when I was with my mother and she handled things. He had no idea what it was like to have to deal with MS every day. It has been just as hard for him to accept my limitations. My anxiety and lack of a social life, my physical limitations and not being able to window shop due to extreme fatigue. Keeping my medications straight and trying to keep me motivated to take bath and get clean. He could not find any job that I could do with my limitations and social anxiety and slight agoraphobia, and he added that even if there were a job I could do the way that I am right now that I would get fired or let go due to the amount of sick days I would have to take due to fatigue and symptoms from my diseases and the medications.

Around the time I let those close to me know just how badly I was hurting, in every way, my day to day functioning became more challenging. Physically I was becoming weaker and walking ten feet would require a twenty minute rest or break because my legs were hurting so badly and I couldn’t catch my breath. The weakness in my arms was becoming more obvious as well. I couldn’t get pots and pans out of the cupboard because they were too heavy. My son, just 8 years old, had to retrieve them for me. Carrying a gallon of milk from the fridge to the counter, about three feet, drained all arm strength for the rest of the day and caused the fatigue to worsen. Pouring from the gallon jug is even harder. Due to all of the physical changes and my family looking at me with pity, my depression and anxiety were boiling under the surface, causing constant nausea and almost daily acute anxiety attacks due to an impending sense of doom and feeling like things would never get better. No medications had helped to any measurable degree and my symptoms, both physically and mentally, continued to get worse and more noticeable. All the while our financial situation had been, still is, getting worse and worse and even though you believe I cannot work, I know that with my physical limitations, severe chronic pain, major depression and my anxiety disorders, including mild agoraphobia which causes me to have acute panic attacks around strangers or when I leave my house, that I cannot work.

May 2012 I had gynecological surgery to try and stop the menstrual bleeding that had started in June of 2011 and hadn’t stopped since. During the procedure he removed uterine polyps that were benign. I continued to bleed and was put on large doses of estrogen to try and stop the bleeding. The Gilenya for MS was once again put on hold until the bleeding stopped. They don’t want to overload my immune system and Gilenya can suppress the immune system.

The fear of leaving my house to go out in public has continued to build and worsen. It takes hours to prepare myself for leaving the house for a doctor’s appointment, which my husband drives me to. I also have to take vallium or a full blown attack would occur. I have always had this problem to some extent but it has gotten worse since I have become sick. My inability to complete simple tasks such as grocery shopping because of physical issues has caused the mental issues to become more evident. Just the thought of leaving the house makes me withdraw into myself and rock back and forth until I feel like I am alone. Pain and fatigue coupled with the extreme, humid heat of summer has caused even more paranoia about leaving the house. I do not want to start fainting again, and leaving the house worries me. All of those things paralyze me with fear and make me completely shut down.

Due to my visible anxiety and fear at leaving the house, my husband has taken over all outside errands such as grocery shopping, picking up my prescriptions, attending the kids school functions after he gets off work, even getting the mail, putting gas in the car and any other thins that requires someone to be outside the house to do it. The feelings of guilt, uselessness, worthlessness and self loathing due to my physical and mental issues, and not being able to do my share or work to bring in money for groceries is so overpowering.

I found more emotions that hang around at the end of that part of the letter, and yes I sent that to the person in charge of my case. I figure I might as well be honest about how pathetic this had made me. I was that kick ass, 5″ heels, and dancing at the club kind of girl. One who did things and didn’t ask for help. Ever. Which is why it has been so hard for me to do so.

I have become such a burden on my husband and I hate it. I always took care of everything and he is in a very high stress situation right now, just with everything. I swore I would never do this to him and I embarrass him walking by him because it is funny. Now I have a cane and walker. I can’t do this to him any more. I would need to figure out what would work out best, but when he gets home from his business engagement I am prepared to offer him a divorce, a no contest one. He can’t take care of me and follow all of his dreams. I have already given up so many of mine, I will not ask him, or let him, give up his. He would just come to hate me later.

%d bloggers like this: