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Post hospital f/u with neurologist tomorrow 1/21/2011

Jan 20, 2011 - 5 comments

I was discharged from the hospital today.  This has been my shortest hospital stay 16 days due to a relapse so far and I hope that any future relapses will be shorter or not happen at all.  

I called my neuro's office to get a f/u appointment from this relapse.  There were no appointments for 3 weeks and I told them to put me on the cancellation list in case that would work better.  The nurse said she found my MRI reports in the system and then said she'll talk to the doctor.  One hour later she called me back and said if I could come in tomorrow an walla, I have an appointment after all.  

I am happy that we will have the conversation about the MRI results, tomorrow instead of in 3 weeks.  It has been suggested to me by the attending neuro that copaxone will be discontinued and we'd need to move on the interferons so that will likely be discussed.  I'm not sure I'm ready to make a decision yet on which one.  

So, I am back home and back to my real life.  My body is weak, wobbly, and frankly, I am scared to do much walking being here by myself.  Al will be here tomorrow and  that couldn't have come at a better time. I believe that is the sole reason that I am sitting at home now and not still in the rehab unit.  Thanks Al for your timing.  

I'll update how the appointment goes tomorrow.    



Had Another Relapse - So, what's the big deal anyway?

Jan 10, 2011 - 2 comments

I am in my 3rd relapse in almost 3 years.  I've had 2 relapses that were not so bad and I recovered very quickly, but it is these bad ones that got me thinking about relapses and how it has a different meaning for me now.

When first started trying to understand what a relapse really means, I read other people's accounts of their relapses and what they did to get over them and now I realize that I CAN NOT campare what I'm going through with what someone else is going through.  No two people with MS are the same or respond the same or even have the exact same path in a relapse.

So what's the big deal about having a relapse besides the fact that  is damage has occurred?  My neuro here in the hospital said "Julie, I exect you to fully recover from this and one week of rehab should be enough".  I was totally onboard with that.  I want to get back my strength, security, life routine and if I can do that in a week the great.

I've got my ducks in a row.  I have a plan in place and know what to expect now that I've been through this a few time. But there is a different feeling this time.  I know I will recover physically, but the emotional toll this has taken on me was not something I had experienced before.  

So, what is the big debal about having a relapse?  Everyone of us get them some more than others some worse than others.  It is a big deal to me and I don't want anyone to take it lightly asking why I am even in the hospital because they didn't have to go to the hospital or rehab.  We are not all alike in how we respond to these things especially after we get past the physical trauma of it and then have to deal with the emotional part of it.  If anyone has a way of dealing with that part of it, I sure could use the help more than ever.  

I still consider myself optimistic that I can manage this, its just at this very moment it is very, very challenging.  



Going for another sleep study - CPAP/BiPAP titration

Aug 20, 2010 - 2 comments

After my last sleep study in July, they found that my apnea was on the borderline of moderate and severe.  Both my pulmonologist and ENT sent orders for me to go back for cpap and bipap titration to see which one will work best for me.

I am not sure what to expect with this study as it will not be the same as the regular studies and doubt I'll get much sleep out of it, but I am tired enough to sleep for sure.

The only thing I want to get out of it is to get set up with this new apparatus so I can know what good sleep is again.  I have been tired for so long that I don't remembe what it feels like to get up feeling well rested and being able to make it through the day without wanting to sleep.

How much of this is related to MS and/or another neuromuscular issue we are looking into is hard to say, but my pulmonologist thinks this is more related to MS than anything else.  I'm not so sure, but what do I know.  

Overall, if this helps me start to feel better then great news.  Bring it on!

Going for Sleep Study Tonight - 7/9/10

Jul 09, 2010 - 4 comments

I can definitely think of a better way to spend a Friday night than go for a sleep study - my second one in 2 years.  

So, why am I goin then?  

When I was in the hospital, the nurses doing rounds at night noted in my chart that they had observed apnea events when they came through.   They woke me and put me on oxygen thinking that would be the correct thing to  do only to find out that this is not appropriate for  apnea as the respiratory therapist told me later.  Another sleep study was recommended.  

Then my daughter came to stay with me after I got out of the hospital.  Since she was sleeping with me she had first hand knowledge of these apnea events, really loud snoring, and odd breathing patterns during the night.  She woke me up on several occassions because she was concerned, but stopped when I threatened her (only kidding).  When I saw the ENT, again another sleep study was recommended.

So that's why I am finally going through with the study - again.  I have my own ideas about what may be making things worse - the muscle relaxant, but will let the pro's make that call.  

I think that it is importatnt for anyone who is suspected of having symptoms that may be related to sleep apnea go and get it checked out.  It is no joke to have apnea, something that can be a cause of daytime sleepiness to actually causing significant physical harm or even death.  

I'll give up my Friday night to make sure things are ok and if they aren't then we will know what we need to do to get things back under control. Better to catch something before it gets worse than to wait.