Update on Stem Cells

My first post on this page was about the stem cells I got for my MS. It’s a very expensive process and a personal choice because as of right now it still is not approved in the US so insurance does not cover it.

Ideally you have this procedure, you see improvement and you don’t have to do it again. Looking back I realize that the stem cells probably gave me a boost in energy during the first few months in addition to the other pleasant changes.

15 months later though I am seeing decline in the changes I originally saw. Whether this is due to my MS re-damaging the areas or what I am not sure. I am not a scientist, though I do love my research.

Originally, before my stem cells I hadn’t been able to feel my feet for nearly three years and then less than a week after the stem cells my feet magically reappeared, at least that’s how it felt. I also had moderate back pain in my spine since 1999 or 1998, honestly it was 20 years ago so I am not sure anymore, that was gone as well.

I thought this back pain was from the first car accident I was in but now that the pain is coming back after being gone for almost a year I am wondering if it is actually from the lesion on my spinal cord in the same area. I know I have an old lesion there because they told me that’s probably the reason I had severe MS “hugs” for several months in 2011.

That’s the kicker, so much money spent, so much hope put in because the pain was gone for the first time in 20 years and now, after a little more than a year it’s coming back. The feeling in my feet is slowly going away too. There is still enough there at the moment that I can sense them, but enough lost that I know what’s coming.

Would I do it all over again knowing? Probably, if I had to do it all over, it was a nice break from pain while I had it. Though I feel terrible that support I received to pay for the procedure ended up not being long term.

Living with MS and Romantic Relationships

I have learned from the process of being diagnosed with MS and being married that communication is key.

Four years ago, I sobbed when the doctor called me with my MRI results and a recommendation to see a Neurologist. “The lesions could be from migraines, but it might be MS”. I knew something was wrong with me, I was just hoping I was wrong.

My husband came with me to the first appointment and it was like we were hearing different things. He was hopeful, there were medications, this was good. I was hearing, “this will kill you, it’s just a matter of how fast and how painful”. It was quite some time before I felt like he really accepted this was a disease of degeneration. I would not stay where I was at the time of diagnosis forever, and most likely, I would not get any better.

Here’s the thing though, I was reading and researching and not sharing feelings or thoughts because I didn’t want to scare my husband, my partner. I had read so many blogs that said a MS diagnosis is the beginning of the end for so many marriages. I didn’t want that, I did not want to lose my partner and I did not want to show weakness to the world.

Much like my decision to start this blog, sharing my feelings about my diagnosis was hard and I wasn’t sure if I was ready. I was finally convinced that sharing is better than not, my marriage would grow stronger with honesty and communication. Other people with MS may benefit from my experiences during my path. So I lay myself bare (figuratively) for all the world and hope it doesn’t cause me too much pain.

We were accepted to a Couples Workshop for MS couples about 2 years ago. We thought if nothing else, it would be a safe place for us to talk with other couples dealing with this drastic change. We learned a lot, we learned communication is so very important. Listening and spending time together outside of M.S. and our kids. Connecting to who we are as a couple now.

I have been in therapy since that workshop, working on myself, my trauma, my life as this person that is not who I used to be. I think that is the most important first step; how are you going to be able to build your relationship with your partner if you can’t deal with your own stuff? My husband came with me to therapy a few weeks ago because I feel like my MS is getting worse and it’s effecting my mood. He said to my therapist, two years ago, she would have never had this conversation. He was right, I learned to bottle up my shit when I was little and hold it down like a wet dog trying to get out of a bath tub.

If you are the partner, hang in there, it’s so hard to go from being a person who has a view of what their life will look like and then get kicked down and told good luck figuring out your new life now. Pain changes people, not usually for the better..

If you have MS, believe in something, science, faith, your partner. It’s so hard to adjust to who you can be now from who you were before, at least it was and still is some days for me. Therapy helps, mine puts everything into perspective but also lets me complain when stuff gets really rough. Then she pulls me back and we figure out a plan of action.  She helps me see things from my partner’s perspective because sometimes that’s really hard when I am wallowing in my sorrows.

Little Things… be grateful

Today, the boys do not have school. They get the day off because it’s parent teacher conference time. This morning we went to my youngest conference and then we stopped to pick up groceries on the way home. Most people grocery shop with a list and walking into the store and down all the required aisles. I do not. I have a service dog that some people still don’t realize that touching without asking is not okay. So instead of using my allotted spoons (energy for those of you without a chronic illness) for buying groceries I order them online and have the nice people at my local store load them up for me.

This online shopping is becoming increasing popular for the general public. Honestly, it helps me in many ways, I don’t have to worry about forgetting something, I start my list online several days before hand and then ask each family member if they need anything in particular. This gives everyone the chance to give me information and I do not have to worry about multiple trips. I don’t use my little energy walking into the store and gathering all the items while also answering people’s questions about my service dog and also advising them that “no, please do not touch him, he’s working”, then loading the car, unloading the car and putting everything away. I know it doesn’t sound exhausting to the “normal” person, but let me tell you, my brain is fried after and my body is more fatigued and requires rest for at least 2 hours before really trying to do anything else.

Today, my loving boys helped me more than then probably realized. We got the online order packed into my car and went home. Once we go there, the boys unloaded almost the entire car for me. They came in like a well oiled machine, one, then the other, over and over, handing me bags of groceries that I just put away. I thanked them for helping me SO MUCH, I think they thought I was just being polite. But honestly, now, because they helped me bring all of the groceries in I may be able to do a load of laundry today or something else.

A very long time ago I used to work in retail. I know it is a hard job, I appreciate the people who do it because it’s not something I could do again. When I thanked the man helping me with my order he kept apologizing for not being able to complete part of my order. I don’t mind, I told him, they saved me time and stress I am just delighted I didn’t have to do it. He told me I would be surprised by how upset some people get because they don’t get a specific brand of carrots. You know what though, the people who are going to be pissy about having the luxury of someone else going around and doing their shopping so they don’t have to should rethink their life goals. If a specific brand is that important to you and it’s going to ruin your day, take you working legs into the store and shop yourself. It’s not their fault your specific, no substitution product was not available.

It’s November, be grateful for what you can, some days are going to be harder than others, but some lives are harder than others.