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Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Tag Archives: support

Decisions, Decisions

08 Wednesday Oct 2014

Posted by juliawillbefine in Daily Life

≈ 1 Comment

Tags

autoimmune disease, changing doctors, choosing a doctor, daily life, expectations, ms, MS Specialist, multiple sclerosis, neurologist, spoonie, support

Prednisone induced insomnia gives a girl a lot of time to think.  As I’ve been working through my feelings about my recent experience cheating on my neurologist, I’ve been trying to get myself to a decision about where to go from here.

I prefer to approach problems analytically, so I started trying to break it down in terms of numbers.  Who has been in practice longer?  Who has been specifically focused on MS longer?  How often do they publish?  How often do they appear to speak?  Do they hold positions outside of their practice?  Do they seem to be held in high regard by the community?  Had other patients reviewed them online?  Basically I googled myself silly.  Two tabs, one for each doc, and I went to town.  After a bit I realized just how crazy this was (did I mention that I’ve not been sleeping?).  I can’t quantify my doctor choice based on their Google results.

Instead, I think it comes down to this: the practice I was going to is busy.  Maybe too busy.  They have a huge patient panel and not enough docs & nurses to handle everyone.  Of course, to complicate matters, I just received word through a local support group that the practice has added a new MS Specialist.  Like in the last two weeks.  I’m not sure if that fact would change things for established patients or if the practice would simply take on more new patients then before.  They are a large practice affiliated with a local teaching hospital, so I don’t think there is any shortage of folks trying to get in the door.

Although I loved the MS Specialist I was seeing and the staff in her office and although I was immensely grateful for everything they did for me leading up to and right after diagnosis, my needs have changed over the last year.  Rather than being completely focused on the panic of the new chronic illness and how we treat for the long term, I now need help with managing the day to day-ness of the disease.  I need symptom management.  I need support.  And periodically, I just need someone to tell me that what I’m experiencing is a concern and why.  I don’t want to feel brushed off.  Or that time is only available for patients with more serious issues.  I want those patients to take priority, of course, but I would hope that at some point someone could also get around to addressing what is going on with me.

W is going to attend the next appointment with the new MS Specialist at the end of the month and unless he has any resounding concerns, I think the decision has already been made.

One major decision down, fourteen thousand little ones to go.  Life should get a bit easier now right?

The Ice Bucket Challenge

23 Saturday Aug 2014

Posted by juliawillbefine in Education

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Tags

als, ice bucket challenge, support

Facebook-land and the Twitter-verse has been rampant with videos and posts about the Ice Bucket Challenge.  I’ve been seeing quite a few posts where folks complain about the pervasiveness and even some (highly disappointing) posts in a few of the MS support groups that seem to begrudge the attention and funds being brought to ALS as a result. As someone who is dealing with MS, I now know several people with more aggressive forms of the disease and I know it can be a nasty – there’s no question – but ALS is terrifying.

In case you haven’t yet seen it, I encourage everyone to watch this video (the first part is pretty ridiculous, so I skipped forward to start the video at the part that I think everyone should see):

I found this video incredibly moving and it shows the quick, frightening progression of ALS:

I personally am glad to see so much attention brought to a disease that clearly needs it.

Six Month Anniversary

17 Saturday May 2014

Posted by juliawillbefine in Education

≈ 3 Comments

Tags

advice, anniversary, asking for help, education, multiple sclerosis, support

Well, it has officially been six months since my diagnosis.  My partial anniversary.  In the MS world, folks seems to consider you a newbie for the first couple years at least, so it doesn’t mean much from that perspective, but for me it was an event of sorts – a hurdle I have managed to overcome.  Although not wiser, I definitely feel more knowledgeable.  I have sucked up MS related information like a sponge and can rattle off a disturbing amount of information.  I am doing my best to keep up with the research that is available and periodically troll through scientific papers that I only partially understand just to get an idea of studies and outcomes.

A few pieces of advice:

1 – Register with the National MS Society.  Reach out to an MS Navigator.  I registered for this program as soon as I received my diagnosis and was amazed by the knowledge these folks can provide.  They started by sending me a list of doctors, email newsletters and connected me with the local chapter.  I even received reading material via mail including a book for the newly diagnosed that was a huge help.  Understanding the disease itself even in a basic way and hearing as many times as possible how different the experience is for each MSer is so very important early on.

2- Ask for help when you need it.  And you will.  Thankfully my husband stepped up without any requests from me and took over tons of stuff around the house that I was having trouble managing on my own.  I asked for concessions at work and they were kindly granted (As a caveat here, I work in a small environment.  For a larger employer, you may wish to seek advice and be very familiar with your rights before approaching an employer).  I found a counselor when I need one.  Although I continue to be slightly frustrated with some of my limitations, I am not afraid to ask for and receive the help I need.

3 – Find a good support group.  The National MS Society has a listing of local chapters and they should be able to direct you to a support group meeting near you.   If you don’t have any luck there, ask your neurologist or MS specialist or call a social worker through your local hospital.   Before attending make sure you know if care partners are welcome.  Some groups and events are aimed for patients only while others are only for the care partners.  Everyone will have their preference, but since W has been so involved since the beginning, I wanted to find a group that would allow us both to attend.

4 – Assuming you are a newbie, try to find a support group that is geared toward the newly diagnosed or those who are minimally impacted even if it is not the closest one to you.  I was grateful to learn this fact early on from an honest social worker who explained that some of the support groups are made up of folks who have had the disease for many, many years and/or are severely impacted.  Keep in mind that disease modifying therapies are relatively new medications, so many people with MS today went years without therapy.  I think if I walked into my first support group meeting and found most people in wheelchairs and/or experiencing and discussing significant cognitive issues, it would have been a very different experience.  I would have honestly been scared, a bit depressed, and less likely to share.

5 – Connect with others.  I felt so very alone during my diagnosis process.  Don’t get me wrong, I have a hugely supportive family, a wonderful husband and even have remarkable support at work.  All the same, I was the one going through the process and experiencing the symptoms and no one around me could completely understand that.  I’ve only just started to get over this by connecting with others through email, facebook and in person at events.  It’s funny because I am a bit of a hermit yet in this, I seem to need and crave interaction with others like me.

6 – Although I encourage connecting with others, choose those connections wisely.  Early on I joined every facebook support group I could find.  It didn’t take long to realize that the world is filled with many people who, when faced with an obstacle in life, respond negatively.  Don’t get me wrong, some negativity is natural.  I was depressed for quite some time and focused on the worst case scenario.  Then I brushed myself off with some help from W, my family, and a counselor and am trying to move on.  There is a huge difference in that and being negative all. the. time.  It isn’t healthy and it definitely isn’t helpful to be around.  So, I started departing facebook groups one at a time.  Some I left completely, others I just turned off so I am still a member, but I don’t see posts unless I go looking for them.  It helped.

Six pieces of advise from one newbie to another in honor of my six month anniversary.  It’s not cake, but it is my current version of a celebration and I hope others may find it useful.

Another First: Support Group Meeting

10 Saturday May 2014

Posted by juliawillbefine in Daily Life

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Tags

education, ms, multiple sclerosis, support, support group

Since Oct of 2013, W and I have experienced a ton of firsts.  My life has revolved a bit around weirdness and unexpected things and every once in a while it just still catches me off guard.  I may pause while taking my nightly pills and wonder how I ended up this way, or giggle strangely sitting in a specialist’s office when I look around and realize I am the youngest person in there by at least 30 years.

With all the crazy firsts, there have also been plenty of amazing ones.  Last month, W and I attended our first MS support group meeting.  It was something that I wanted to do, but things kept getting in the way.  The closest meeting to us is about 45 minutes away and is only held mid week in the evenings.  As I was battling fatigue, it was hard to convince myself that this was a necessary step.  We’re lucky enough to have a support group that is specifically for the newly diagnosed, so this time we told ourselves we would go regardless of the circumstances, and so we did.

I can’t express enough how wonderful it was to be in a room of other MS patients who were just talking about whatever was going on in their lives.  Some talked about medication, others about frustrations with doctors or new symptoms and overall stress.  The group leaders are a husband/wife team who are amazing and took the time to make sure that everyone in the room talked even just briefly.  I am not one to speak in public, even in a small group setting like this, but they encouraged me to talk about Rituxan as they have not had anyone in the group on that particular medication.  I spouted off an abbreviated version of my story, a bit about the medication and my experience with it and answered some questions.  I even managed to get a few giggles from folks while I was talking.  Everything is confidential, so I felt totally comfortable sharing and honestly am incredibly excited to go back.

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