MS update - Buying Time and Holding on to Hope

Time for my usually annual MS update.  

To be fair I lost a lot of last year with trying to get Abby through her Eagle Project, and Eagle and Graduation ceremonies, choir and band concerts, gatherings, all the last things of a high school senior and I did a lot of this with a boot on my foot as the birthday curse hit again with a broken foot in late March that carried me through May.  So I guess this update is for the last two years.

One of the things with having a chronic illness is one becomes hyper vigilant of all the aches and pains and weird that pop up.  Here are a list of common MS symptoms and mine include: Fatigue, Brain Fog, Occasional Acute Pain, Spasticity, and Pins and Needles (this one is nearly constant in my hands and feet)  https://www.healthline.com/health/multiple-sclerosis/lingo-defined

I work really hard to try not to get overly stressed and as a result most of these things leave me alone most of the time.  It is hard to know what is caused by MS and what is a new an exciting annoying health adventure.  One thing I have learned is I have to keep doing my homework on research, advocating for what I need, and paying attention to the signs.

That said, I spent the end of April and beginning of May feeling pretty good in the mornings, and feeling like I am moving through molasses in the afternoon.  That false hope of a great day crushed by the demon of MS day after day for a couple of weeks.  It doesn't mean I am not terrified that the next micro flare won't be permanent, but I live my life with hope that tomorrow will be better.  It makes me grateful for days that are awesome all the way through where I am able to do all the things I want to get done and not have to pick and choose knowing I won't get past noon.  It also reminds me to ask for help, and give myself some grace when I struggle.

Yesterday I had one of my twice a year infusions of Ocrevus.  Right now it is likely the best MS disease modifying therapy (DMT) on the market for stopping the progression of MS and greatly reducing inflammation of the nervous system.  I used to go down to MercyOne in Des Moines for these treatments and it would burn a whole day in a big noisy infusion center, but with several friends going to our local infusion center for treatment, and getting moved to the faster treatment I went from almost two hours in the car and 5-6 hours in the center, to walking to my infusion, and in and out in four hours.  I even had my own room.  It was awesome.  The article below is a great recap of what the DMTs really do for us and I added a great quote from it below.

https://multiplesclerosisnewstoday.com/columns/chairborne-a-column-by-ben-hofmeister/2023/04/27/our-treatments-multiple-sclerosis-arent-cures-vital-time-buyers/

"Ocrevus is a disease modifier, but it isn’t a cure. MS is slowed or halted, but not eliminated. The damage is done, and short of a remyelinating therapy, I may not get any better. In the meantime, the hope is that I won’t get any worse. With that goal in mind, Ocrevus seems to be an excellent time-buyer."

With that my last two MRIs and health checks with my MS support team have shown that my illness is stable.  No new activity showing up, no growth of the weird tumor in my brain, no new symptoms so I will just keep on keeping on.  Advocating for what I need, managing my stress (really so terrible at this), doing my best with regular exercise and good food choices, and making plans to live my best life.

I am surrounded by people who care and support my mission and for that I am grateful.  Wishing you all the best in health.

Bees, Bees, and more Bees

So it has been a dream of mine to have my own bee hives.  I took classes the winter we moved out to the acreage in 2017.  Met a bee mentor, Arvin, whose bees I helped move about and tend, and then we moved back to town before realizing that dream.

I have room on my city homestead for some bees so last May I finally got two hives set up with the help of my bee mentor Arvin.  They hang out by the chickens, gardens and prairie.  

Going into winter I had one strong hive and one under performing hive so I was pretty sure I'd come out of winter with only one hive.  I made sure they had plenty of sugar through the winter and checked on them in March and still active.

From when I worked the hives
last fall looking for honey they might 
share with me

Working the hives solo last fall

Arvin came to check on them in April while I was traveling for work, and sadly both hives were vacant.  The week I got back I noticed that there were bees again and the volumes kept getting bigger the last couple of weeks until I saw bees oozing out of the strong hive boxes over the weekend.  I sent Arvin a picture yesterday and he agreed we'd better take a look at things.  

Something curious is happening
under the lid here.

This has nicely capped comb, 
drone cells (male bees), and 
a very large queen cell

Turns out the hive had a swarm move in (or maybe my bees came back who knows) but there were more bees then I have ever seen in one hive.  All three boxes were bursting at the seems and they were laying in the honey super (oops).

As we started working the hive we found drone cells, capped bee baby brood cells and TWO queen cells.  So we decided to move one queen cell, some bees and brood over to the second hive to see if both hives would take off with the new queens soon to emerge.  (Adding to the second hive in the left photo.) Arvin will be back in a couple of weeks to see how we are doing.

So right now we have two queen cells (the bees decided to make a couple of new queens to replace the current one they have laying).  As far as we know there is a queen in this mess of bees somewhere as there was fresh brood on much of the comb we checked.  The bees appear to be loving spring as they are bringing in pollen as well.

As we worked with both hives the larger hive was bursting out the bottom with bees (see photo right).  About that time we had agitated them enough that I got an literal bee in my bonnet and stung on my neck.  Trying a new sting treatment route this time to see if I can reduce the swelling. I got stung in Feb/March when I brought more sugar out and my left hand got very swollen.

In other news I did get to go to an all day bee seminar late winter and learned a lot.  One thing I need to do is turn my second hive or moved it a bit farther from the first one so there less likelihood of robbing to give both hives a better chance of success.

I also learned how to do a coming out of winter inspection to try to diagnose what went wrong with a hive that doesn't overwinter.  With bees moved into my empty hive I didn't get a chance to but learning more every day.  Excited to have bees.  

Hopefully they will flourish as my prairie gets going and all the neighborhood plants continue to bloom.  I live in a great part of the city for things that flower 8 months out of the year. We would love to have them share a little honey by seasons end so hoping for a good run, and that I can keep up with them.  I love learning new things.  :)