Lately, I have had a hard time with my job. Don’t get me wrong, I love my work, just some days it’s a pain. Literally, this has nothing to do with MS, so if you’re looking for a story about injustice in the workplace, or some such crap, this isn’t it. I honestly have a passion for what I do at my job, just not the people I do it with.
There’s a person there who believes they are the cat’s pajamas. They are right about everything. Nothing they do is wrong. Yet, constantly and consistently, I am having to point out to them the undeniable facts. And STILL, they refuse to see their mistakes. It’s draining me of my passion and causing me to question just what I am doing.
So, I go a different route. I get paid to do my job. I live for my work. I am officially tagging myself a writer. I have three books pending edit right now. I have e-published another, (Broken, by Brandy Leigh) which is available globally. I am writing for an online magazine right now as well. Not only this, but I am working on writing for my church drama team.
I have always been a very creative person. i have never felt better than when I am in the throngs of a creative whim. I love writing, I love acting, I love singing, I love sewing, and cutting, and painting, and gluing. LOVE IT.
Yes, I am doing all of these things. I love doing them. Yes, doing all fo this adds a bit of stress to my life. I love doing this. The best part is that I finally am getting my shot at doing what I want with my life. i am not sitting back and just doing my job. I feel like, for the first time in my life, I am accomplishing more for myself. I am living my dream, though it’s a small-scale. I am doing this regardless of pay, regardless of success, regardless of stress and MS and anything else. I am doing work that I love and it’s given me back more than I can ever say.
So, what are you doing today? Are you doing your job? or are you working?
I have to tell you it’s been a while since I have posted anything. There have been minimal flare ups since being on this new medication. Occasional my tongue goes numb or fingertips, but it’s really nothing major. I thank God every day for these meds and that I am able to be healthy and active. I even managed to lose weight this year and keep it off… sounds like a commercial, but it’s the honest to God truth!
Not only am I active, I am taking part again in Walk MS. I am working on fundraising, so hit that link up it you haven’t recently!!! Any and all assistance is welcome. Get involved people, or get out-of-the-way!
Aside from the MS, my personal life has fallen apart. I guess it took being diagnosed just to see how little or how much I, my life, meant to the people around me. For some I lost respect and for some I just let go. I found in the latter months that writing helped me to cope with the changes and issues I was facing. That’s where this comes in:
Please, check it out, write a review… I would really appreciate it! There’s more to come soon!
Gilenya - oral MS medication. It is FDA Approved medication.
In my last report, I told you that I was having to choose between three medications. I chose the oral medication with the potential of sudden cardiac death, bradycardia, trouble seeing/blindness, etc. Awesome medication from the literature.
I took the first dose and waited for the worst for 6 hours in the doctor’s office. There were 4 of us getting the first doses that day. It was great to have people around. We were all going through something different, all at different stages of our lives, and in different progressions of our disease. We got a chance to talk. Every hour a nurse took our temperatures, our blood pressures, and our pulse.
It was really scary for the first hour. By hour 6, even I was tired of texting that I was still alive and well. It was a very uneventful process for us all, thank God.
That lasted for a few days, by the weekend I was having trouble breathing. Even the short walk from my car to the office was a strain. I was used to walking/running 2-3 miles a day, so this was odd. I called the doctor and was directed to stop taking it for a few days. I went right back to taking it on Monday, only this time at night. It’s amazing what a difference that made!!!
Now, at three months, I have had a couple of issues. There have been a few muscle spasms, a couple of tingle spots, a few aches and pains, but nothing really to freak out about. I have been working out, and in the last 6 months, while being on the Gilenya, I have lost 6.3% body fat, 40 lbs., and 44.5 inches. I am up to over 5 miles a day and I feel great!!!
My advice, find the best time for you to take the meds. Do everything you can to stay active and healthy. This really has helped, and I will keep you updated on the situation as it progresses.
HA! There is nothing really new to report. Going through the process of getting new medication in. It’s pretty lengthy. I have been through a full eye exam, a breath test, and a cardiovascular work up. I also have had liver function test (very common in MS’ers) and a few blood panels. I passed everything, so the doc thinks it’s safe to go ahead and do the treatment. Now we are just waiting for the order to come in from the manufacturer. So treatment is on track.
I totaled my car just before Thanksgiving, and very thankfully no one was hurt. I am annoyed with the lack of care and attention ANYONE pays when it comes to insurance. YOU BETTER HAVE IT, and if your late paying them, WOOOO HOOOO! LOOK OUT!, but for two months now I have been at their mercy. It’s a pain.
My marriage is the same as it was a few months ago. Sadly I though that once we talked things out it would all magically get better. I realize more and more that the person I married doesn’t get me, my life, my goals, my reason, my faith, feeling, passion, any of me, at all. It’s very sad to know someone who is willing to just be instead of live. It’s sad to watch someone sleep through their own lives, but also the lives of their children. Come on guys!!! Whatever excuse you have for being this way, STOP IT!!! You are perfectly capable of being good and attentive listeners, care givers, friends, lovers, and yet when it comes down to it, at least in my case, none of that shows up.
“If you don’t know, then you can’t care, and you show up but, you’re not there.” -Maroon 5
Memorize it and know it, because it is 100% true and trust me, living with someone like that, makes you miserable.
Until next time…
I had a relapse. At first it was no big deal, well to me. I lost the feeling in my right arm for a few days… a month now. I went to Neuro Doc and he told me we needed scans. So I had the big bad MRI and there’s nothing active, but there are two new lesions. Meaning, the Rebif is no longer working and we need to start a new treatment.
I have three options. My first is clinical trial. My second is Tysabri. My third is Gelinya, the new oral medication. Each poses its own risk.
#1-Clinical Trial – On paper, clinical trial looks great. There are no side effects, yet. There’s no negative information, yet. There also isn’t a guarantee you’ll be given treatment if you’re in a clinical trial because of placebos. There also is the testing and documentation which means missing work, losing income, and more and more tests.
#2-Tysabri- This is a once a week, one hour, IV infusion. Side effects are allergies, chest pain, breathing issues, depression, flu symptoms, loss of appetite, muscle weakness, problems with balance, talking, or walking, and turning yellow. OH OH OH WAIT!!! There’s also a 1:1000 of catching a fatal illness called PML, not just the first dose, but EVERY dose.
#3-Gilenya- I have been waiting for a while for this medicine to come out. Finally it’s here. I comes in pill form, yay!!! It also comes with a $40,000/year price tag. The programs are in place, but so few people have registered for them, because of so few people being on this drug, no one is quite sure how much I would end up paying. Whatever. The side effects are scary as hell. There are three that are outside the norm: bradycardia (always knew brady was evil), macular edema, and diffusion issues. Bradycardia is a very low heart rate. This can occur within the first 6-8 hours of the first dose and last for a month or more. It also can lead to sudden cardiac death. Macular edema is the deterioration and swelling of the optic nerve leading to double vision or blindness. Diffusion is the rate at which your blood transfers CO2 to the lungs and picks up oxygen. This can be lowered to dangerous levels causing breathing issues, which lead to heart issues, which… well, read above.
I don’t know what to do. I have been to the eye doc, the cardiologist, still waiting for the Neuro Doc to read the tests and let me know if I am still eligible. If I am, the question becomes, is it worth it? The prospect of dying over the first month of treatment is scary, but honestly beats the chance of catching PML, which is fatal, once a month. I am not sure if any of these options are worth the risk. Would it be better to keep taking the meds I have been? Would it be better to take nothing at all? What really is the chance of the therapy killing me first?
Honestly, I have done my research, done my tests, done my reading. If the Doc says I can go ahead with it, then I will try the new medication. If not, I think I may opt to try another beta interferon before the Tysabri, or at least do my researching on PML risks and testing a little further. I don’t know. I do know that I have two babies, two babies who are my whole world, and if I were gone, what would happen to them? Where would they go? Would their dad step up? Would they be with my mom? What would be best? What would happen? It scares the hell out of me.
Right now I am at a cross roads. I know it really had nothing to do with my disease. Many people blame MS for the destruction of their relationships, both near and far. I wish that were the case.
4.5 years ago, I got married, to the person I thought was my soul mate. He was the first person I woke up to that I wasn’t still mad at for some transgression. He was sweet on me to a fault. He seemed happy and loving and caring and all of those things.
This all stopped with the advent of Addison. She’s my daughter. She was the shining light of my life, and still for the most part is. She has a brother now, who beats her in the sweetness factor, and they are tied across the board, until you get to intellect, in which his older sister trounced him. It’s all good. These two are twins as non twins can be. She’s the mothering kind and he’s the snuggling kind. I love them with all my heart.
I took a drastic measure recently, leaving home. I moved out for 3 days and decided to move back, provided he wasn’t here. I needed time to get my head together, my space together, our routine down, and myself back. He allowed me just two short days before he broke into the irresponsible-ness that is my husband.
Tonight we were at his highschool reunion and EVERYONE was saying how I must be a good one, a great one, a cool chick. I ran out of eye rolls and snide comments. I smiled and nodded as I filled my mouth and self with beer to cope… That’s bad. It’s all bad, and yet barely any of it is my fault.
My husband is very much a family guy, just not a kid guy. He loves hanging out with his family and his friends, but as for his wife and his two children, he’s a video game playing, computer hogging, TV glaring person. He wasn’t like this always. There was a time when he paid attention to where he was going and what he was doing. He looked around, got the lay of the land, and adjusted his emotional balance and physical persona out there.
I am not mad about this. I am hurt by it. I am mad because he constantly and consistently misses the boat. He’s not right, though he’ll fight tooth and nail to prove the sky you just saw was Aqua Marine and not blue. You didn’t care too much until he started debating his right-ness.
I got married to do everything together. I never got married to end up alone. Yet, here I am on a new day blogging to the world my life and my relationship. I am hoping he can get over himself and be the standup man who I married instead of this 17-year-old slob that Zac Ephron would be ashamed of.
Regardless of my personal situation, there are things about my disease that annoy me. Shots. I hate them. None of us like them. Yet they are an everyday, or every other day, occurrence for all of us. I don’t want to be reminded of them. I just want to do it in my good time and screw everything else. Here’s a tip, if you want to show caring, don’t touch my meds. Leave that to me. Make that my call and decision. Leave the pain alone.
If you want to help:
1. Leave the meds alone.
2. Ask me how my day was and if I was feeling weird, light-headed, anything other than focusing on med day or severe symptoms. MSers’ don’t want pity. We need and want to be treated like real people. There’s nothing you can say to bring back the feeling in appendages, but plenty you can say to prove you care and we’re normal.
3. Offer help. If you see the person you are caring about having trouble, offer help. DO NOT lecture and seem to be a know-it-all about anything. The meds and disease function differently for everyone.
4. Offer personal contact. Hugs. Massages. Don’t just focus on life outside. If you want to care about a person with MS, care about the person, not the disease.
5. Talk. Ask. If you don’t know don’t assume it’s not a valid issue or question that needs to be brought to light, ask. It’s important to keep communication open and honest. Be frank, even if you aren’t him.
These are just a few tips I have come up with over the year. It’s been one year since my diagnosis. Since the day my husband walked in, saw the papers, asked if the test was positive, said, “sorry to hear that” and went out of the house to smoke. One year. Can you tell that action, or lack of, killed me? Be wary. Do not be flippant, be caring. Do not blow it off and boil it down to meds, be real. We’ll thank you for it.