Whenever I can I try to research any new info on MS, any new holistic/diet/supplement news and I read the MS medical site. I like to keep up on meds coming into the arena, any new things that work for others. Steve's research on B12 is how we found that MS eats your B12 from your body and even though you test fine or even just a tad low taking a monthly injection increases your energy. Thankfully his dr was game to give it a try and he does that shot monthly, his MS shot every Sunday evening. I try to find foods that are also good for stomachs since I worry that weekly big dose of Ibuprofen along with other medicine otc he takes for headaches etc may wreck havoc on his stomach lining with time.
Most times I like doing research and feel enlightened, hopeful. I'm a firm believer knowledge is power and with a chronic disease it is not only power but may be a lifesaver. And if I don't understand the disease then I can't be Steve's side kick to fight it..and I can't be an education source for those that need info like we did..and still do!!
Sometimes I'll hit on a MS blog that has no reality to us. People will blog their mean hateful spouse is cheating on them due to them (the mean person) having MS. It's not MS..it's the person's flaw. Hateful, morose blogs don't fit in our life..they are unrealistic and have no benefit to us. Sometimes I hit a blog that is inspiring and makes me feel like "we got this". And then..sometimes...I hit blogs that turn me inside out. I stumbled onto one today. After a few posts I could feel the tears working in my eyes. After a few more I could feel the acid in my stomach turn. A few more and I vowed to stop reading..the pain of what could be too realistic. But another part of me compelled me to read it.
The blog writer was in his late 30s to early 40s. His life mate was a happy go lucky guy of the same age, good health, and both lived life happy, traveling, gardening, you name it. Then his mate got sick and was hospitalized and diagnosed with MS. The dr gave them the pep talk "MS does it's own thing. Each case is individual. This could happen, this can happen..we really don't know what will happen. Take your meds, watch stress, exercise." blah blah. Unfortunately the man's MS vamped into a severely fast moving progressive form. It talked about how it went from tiredness and a limp to bedridden to a motorized wheel chair. Within a year give or take the man was not doing well and was hospitalized numerous times for infections, sickness and till his feet no longer would stop hurting, his legs continued to ache...till finally the last infection landed him in an ICU room..and the blog ended with the man in a hospice building and finally dying.
Oh my. I know that the man's form of MS is rare...people can have MS for years and never know it medically. But the blog hit my feelings on the head when the survivor said "I became an addict..and addict to the garden, an addict to my routine." When Steve was diagnosed Kaya and I literally lived in the garden. Her playing in the yard with me or in the garden with me. It became my focus because I could control that garden, pull those weeds..I could NOT control MS, Steve's situation. When the meds made horrible mood swings and every noise set him off..I couldn't control his emotions. He was never mean to us just constantly edgy while his body adjusted to a foreign medicine. But I could control that dang garden.
The blog hit me hard too because it showed a raw side of MS that many do not know. People our age don't think about having that talk about funeral plans. They don't have the talk we had with what we would do if meds became out of our reach, or he reacted badly too many of them. Many our age haven't discussed if another child is possible and if we should take that leap...with the fear of eventually their mate not walking while still having a kid and possibly a baby. We have broached a lot of subjects that couples our age give no thought too. At first I felt alone. My friends husbands are healthy and they have never had any medical issues. But they have never once fell away from us or the disease and are there every step of the way. My friends at work are our rally squad :) and often lift me up more than they know. My dear friend had a husband battling a serious disease that ended in his death much too young and she became my strength. I saw how she held herself and never stopped loving life or those around her..and that strength..strengthened me.
I'm thankful that our blog has happy posts. We have our days where Steve aches. He has a limp now that gets worse when he's tired or the weather is nuts. He has to stretch in the mornings to keep his muscles flexible some days..other days he can be fine. But he constantly has MS. We just don't let it become our focus. A family member once said how health issues are..and I want so badly to tell them that surgery can fix what they have, rest can give them a new outlook..NOTHING will cure MS. At least not yet.
So life has settled down for now. We still have insane medical bills but without insurance we'd be sunk. That is only one price of the disease. And that we can have on paper, budget and pay..and control. That is probably the only area of MS you can control.
Kaya, being 5 sees life how it is. "We are a happy happy family. Daddy is my superhero he just has to have a nap sometimes. He has a disease but it's not contagious."
Man, that speaks volumes huh? He has a disease but it's not contagious. It's not contagious. I rolled that over in my mind. Nope, it's not contagious. You won't get MS by sharing cups, by holding hands...and we don't allow MS to be contagious in our lives! We don't let our lives be lead and ruled by MS.
So the blog made me cry, it made me say a silent prayer for the MS fighter in the stories and one for his loved one left behind. It made me realize that there are folks out there that feel like I do. And they feel sometimes the way I do with the same guilt. I often worry am I doing enough, am I supportive enough. I worry if I have a tired night or if I come off as mean to Steve. I once told his family that I can't be like them and always be sweet and say it's ok I HAVE to be the one that says "Ok, enough. Pull your big boy undies up and lets get onto the next project".I can't let him wallow or feel low for too long. And I'm thankful for the hugs I get from Steve.
I was thankful for the blog in the fact that it showed me how well we do have it. Steve is an active person and very lucky to have a good dr team and the urge to do what he needs to do. He knows he can't let the disease have an inch. He has to keep the upperhand. He's still a strong man physically and MS rarely slows us down unless super cold or super hot. We simply refocus and do things a different way :)
When he put his arms around me and apologized for this disease I told him. Don't ever apologize for things out of your control. I love you warts and all and I want you to love me warts and all. Besides..I got to keep him he builds the coolest things lol ;)
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