My son left for college this morning and through the constant ache in my heart I’m finding the good part to help me through this very long, slow-moving day. My mind has been reliving the moments that are a part of me forever. I can smell his sweet baby scent from the back of his neck that I inhaled daily from rocking him even when the books said I should be putting him down. I still feel the pit in my stomach watching him learn how to crash onto the front lawn riding his BigWheel. I can hear his raspy little voice telling me that I was a princess as he watched me put on my makeup and jewelry. I could fill pages with moments like these. I could also fill pages telling how life plays a cruel trick letting our children jump from one milestone to the next in the blink of an eye. Instead, I am going to tell you the good part. My son and I are very close and have a wonderful relationship. He’s also going to college! Thinking about him going to college and what he has chosen to study brings me to the good part of having MS. My son wrote a paper in high school about seeing me in the hospital and watching me recover from relapse and flares. He wrote that seeing these things helped him to know what he wants to do with his life. He changed focus in school and started classes in health science and became very active in HOSA, a club that prepares students for careers in the healthcare industry. My son is now a BioChemistry major and is planning on continuing on to med school to become a doctor. While my MS took so much away from me, it gave my son invaluable direction. This is the good part of MS for me. What are the good parts of your trials and are you willing to see them? I will painfully miss my son and MS will take pieces of me that will hurt emotionally as well as physically but finding the good parts and holding on to them have and will continue to make it all easier.
I’m that person, the one I promised I wasn’t going to be. I’ve been feeling sorry for myself and have been giving myself permission to retreat into my bubble at pretty much every little bump in the road. A friend asked me if I’ve been writing and I hated my answer enough to get up and brush myself off. My last MRI sucked and that is what knocked me down…hard. I can no longer boast in my MS support group about how long it’s been since I’ve had a relapse or change in my MRI. I really liked being that person and felt like it allowed me to help others, especially the newly diagnosed. It made me feel strong and in control over a body that is anything but strong and a disease that gets most of its attention because controlling it is often tricky and at times somewhat mysterious. All of us diagnosed with Multiple Sclerosis know that we can wake up in the morning unable to walk, button our shirt, speak clearly, go to the bathroom unassisted or even see. These are the big broad ones, there are others. If I think about this too long I start to panic so I try hard not to. The part of the MS uncertainty that I didn’t pay any attention to is the part of the disease that doesn’t demand it but is there just the same- changing MRIs. I knew by the questions I was asked after the scan that things weren’t good. I usually come back the next day to get a copy of the radiology report with a CD of all the images. I didn’t do that this time and instead waited for my appointment to get the news. I still haven’t gotten the report/CD because I still don’t want to know everything. I don’t want to know the new lesion count. My disease is progressing and does it really matter how many new lesions I have? I could wake up tomorrow and have five new ones. So, now I’m trying to decide how to proceed therapeutically. Is Copaxone still working or working enough? Will any of the others work better? No one knows. I see my doctor again next week and will have my answer. I need to move on from this and I will. Oh, I also got denied insurance for the second time because I have a preexisting condition but that is for another post….
…that’s draining me into a lump on the floor. Seriously, I am so tired and not normal tired, MS tired which is normal tired on either steroids or crack-your choice. I haven’t written in over a month now and I feel it mentally and emotionally. There is therapy in writing whether it be journaling, letter writing or blogging. I’ve missed this and I have chosen to blame the heat for its absence. I’ve never asked my doctor why the heat affects people with Multiple Sclerosis so greatly and why our fatigue is so bad. What is happening in our bodies that makes these so? I figure inflammation plays a part but what else? I need to remember to ask this next month. “Remember”…..that’s funny.
There are some awesome things and tricks I’ve learned the last few years that really do help with the heat: * Ice behind the neck (my personal favorite!) *Putting wrists under cold running water or against ice packs *After a shower allow hair to air-dry while laying on the bed with the ceiling fan on high *Freeze juice in ice-cube trays to munch on throughout the day *Tell yourself everyday that summer doesn’t last forever
There’s a show on TV called Hoarders and it’s about just that, people who keep so much crap in their house that they literally can’t get into rooms and sometimes even find dead animals buried beneath the plethora of….everything! I’ve been thinking a lot lately about hoarding. What do people keep and refuse to give up and why? While I am not a hoarder of things, I’ve recently realized that I am a hoarder of unnecessary emotions. There are too many things I care about that I really shouldn’t. I know that stress isn’t good for anyone and with MS you physically feel stress and that can actually be quite scary at times. I know this intellectually but the hoarder in me can’t help itself. I carry so many feelings of worry, doubt and frustration that’s doing nothing but making my face numb, my toes burn, my mouth forget how to say words and my legs wobble- equally embarrassing at times as frightening. Some of the emotions I’m hoarding have to do with my MS but most of them have to do with really ridiculous things and people. I really frustrate myself sometimes! So, I need to clean house so to speak and give myself room to feel better, sleep better and smile better. There are things worthy of keeping, some forever and others for only a period of time. There are also things that should never be allowed in your head and heart and some that only need to be there for a while. The first step is always recognizing the problem which I have. Now, I need to devise a plan to throw away a bunch of crap….for good.
Today is World MS Day. It doesn’t feel like much to me because it was just MS Awareness Week and MS Month. There has been a lot of awareness and money raised recently and that makes me more than happy. I have a lot of friends who made facebook posts and sent emails about MS symptoms, statistics, needs, hopes and dreams. I’ve decided to take the day to try to plan my year until the next World MS Day. What I see ahead of me is hot weather, graduation, birthdays, even hotter weather, goodbyes, holidays, a much awaited fall/winter, a new year and a beautiful spring. I wish I could include something exciting or even different about my MS but I’m thinking it will stay how it is now- Copaxone, more lipoatrophy, fatigue and cog fog. Oh, and my face will be numb at least a third of the year….seriously. I know this is all really good and I should and will be grateful if this is how it all plays out. I’m just ready for a new therapy. My insurance situation is changing again and this may allow for a change but I don’t want to get my hopes up. So, I will be happy if I get to move away from injections but happy if I don’t because that means my disease is stable. I am going to embrace the heat this summer because near the end of it comes a bittersweet goodbye. I’m looking forward to the holidays and birthdays because they are always fun. I’m actually use to having a numb face so maybe I should start having my eyebrows waxed? That would be a plus of having a numb face. Always try to find a silver lining….