Updates: Doctors Appointment, Multiple Sclerosis, and Everything Else

Updates

I had a doctors appointment on Monday June 8th and I wanted to write a short update about that appointment and also an update about how I have been feeling lately.  I also decided as I was writing this post that I wanted to include just a general life update because  I am truly struggling with things right now.  I can’t tell everything that is bothering me but I will tell what I can and maybe I will still write what is going on and password protect those posts and if you want to check them out you can email me and I will give you the password for them.  Anyway lets get on to the MS update because that is the easiest and quickest part of this post.

As I said before I had a doctor’s appointment Monday afternoon with my neurologist.  I hadn’t had an MRI or anything since I saw her last but she does like to see me every so often because of the medication I am on and things like that.   I haven’t been feeling the greatest lately but there is nothing that can really be done about that because I just don’t feel well.  My headaches are getting bad again which totally sucks because I went so long without having them or at least not having super bads one.  I know that the reason I am having them is because of allergies and also just the stress of life.  I have an MRI in August and I don’t have to see the doctor again until December so that will be nice.

Now on to the life crap that I am willing or able to talk about.  I have no idea where to start or what I even want to say.  I guess the first place to start is with the fact that the daughter I placed for adoption will be 10 this year and I am honestly not sure where the time went.  It has also been a hard year this year when it comes to dealing with the adoption and I am not sure why this year has been so hard for me.

Another thing that has been hard for me this year is family things and usually I don’t really care what goes on with family members but this year that has changed for me.  What is funny about it all is that what I am sad about didn’t even happen this year and to be honest I am not sure why it is now bothers me like it is.  I am sure it is because of everything else going on that is making all the little things in life that usually don’t affect me hard for me to deal with right now.

Anyway that is all I can think of right now so I am going to leave it like this.

How are things going for you???

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MS Tuesday-Pissed Off

MS

I am not sure where this post is going to take us because I just have been feeling pissed off at this stupid disease and it makes us go through.  I guess what I am really pissed off about is any invisible illness that makes our lives so hard.  I have been dealing with this for years and for the most part I don’t let myself get upset about the disease but lately I am just pissed off.

I am so tired of not knowing what any day is going to bring and how I am going to feel any given day.  It is hard to try and keep going every day when I have no idea what is going to happen that day.  I know that no one knows what will happen any given day but when you never know if it will be a good day or a bad day because of the MS it gets hard.

It just pisses me off that I am having more bad days than good days anymore.  I don’t know that there is anything that can be done so I just need to accept things as they are and stop being pissed off at the disease.  I know this will come in time but right now I just want to be pissed off even though I know it won’t solve anything.  I hope that this phase passes soon because it is no fun for me and it isn’t fun for the people who I snap at because I am so frustrated with everything right now.  Anyway that is all I have for today.

How are you doing?

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Adoption Thoughts-Feeling Guilty

Adoption Thoughts

I haven’t had posted an adoption thoughts post in awhile and recently I had something come up that has to do with my birth daughter and genetics.  I know that there isn’t anything I do about the situation now but it still makes me feel bad and like I should have done something different when I was pregnant so that something like this wouldn’t happen but that being said I know that there was nothing I could have ever done to stop this from happening.

I was informed a few months ago the my daughter has Alopecia Areata which is an autoimmune disease like Multiple Sclerosis but her immune system is attacking her hair follicles so she has no hair.  She will be ten this year and I can’t even imagine what it has to feel like having no hair and being a kid today.  I have spent tons of time wishing I could trade places with her because people don’t have to know that you have MS but when you have no hair everyone can see that.

The reason I feel guilty is because there are strong indicators that autoimmune diseases are hereditary so because I have one she has one and that is hard for me to accept.  I know that there is nothing I could have done to stop this from happening but it is still hard for me to know that because of me she developed this condition.

I know in time this will get easier to deal with and I won’t feel guilty but for now that is how I feel.  It has also cemented in my mind that I won’t be having kids because I don’t want to risk something like this happening to them.  I have another adoption thoughts post coming up because I am so sick of people judging those of us who place our children for adoption.  Just because you are looking at our situation thinking we could raise our kids doesn’t mean we should.  Anyway I will leave rest of that rant for another post in the near future.

What are you thoughts on this subject?

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Weekly Wrap-Up

Weekly Wrap-Up

Welcome to another weekly wrap-up post.  I only had two other post this week.  I just got busy at work and didn’t have the time to write the other posts that I had planned for this week so I am hoping to get to them in next couple of weeks.  One post that I had planned was an adoption thoughts post about how I feel guilty because of my genetics and a condition that I passed on to my daughter.  I also was going to do a post totally made up of pictures of my day because I thought that would be super fun but I didn’t get around to take pictures so that post will also be coming up in the next few weeks.

  • This weeks quote is by Ellen Glasgow and it is about growth and moving forward in life.  I really loved it so if you missed it you can click here to read it and let me know what you think of it.
  • The other post this week was an MS Tuesday post where I updated on what has been going on with me lately in regards to the MS and my eye site.  If you want to check that out you can click here and check out that update.

This week I saw this picture on Facebook and I loved it:

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This is how I feel most days at work because the people I work with don’t understand MS and how it can affect me from day to day.  Next week I have 3 book reviews coming up and a few other posts.  I hope you all had a great week and I will see you back here next week.

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MS Tuesday-Update On Me

MS

I recently had an MRI and I also have something going on with my eyes that I wanted to document so that if I needed too I would be able to remember when it first started.  First I am going to talk about what is going on with my sight and then I will talk about what the MRI showed along with my thoughts on it all.

So I started noticing that I am getting major headaches for the past 6 months or so when I do a ton of reading.  At first I just thought that it was because I needed to start wearing my glasses again so I figured I would go to the eye doctor and get an updated prescription and that I would be back to normal after that.  When I went and saw my eye doctor he basically told me he wasn’t sure what was going on because he couldn’t get my vision to correct which is a huge change from what it used to be like.  I was referred to see an opthamologist and I still haven’t made an appointment because I am waiting to talk with my neurologist about it first.

If I am being honest I was hoping that the MRI would show that the disease was active or that it had been active because I was hoping that whatever is going on with my eyes could go back to normal.  The MRI showed that the disease is stable and that it hasn’t been active in over 6 years which I know is a great thing but I am not happy about it.  Since the MS hasn’t been active I now have to go see another doctor about my eyes because the headaches I have been getting need to go.

When I was diagnosed with MS I never thought that I could go blind.  I have come accept that I might end up not being able to walk but I am struggling with the fact that I could go blind.  For me going blind would be the worst possible thing that could happen to me because I can’t imagine not being able to read books anymore.  I know there are audio books and things like that but I love reading actual books and not being able to do that anymore makes me truly depressed.

Anyway that is the update for now.  I will have a follow up post about my eyes after I see my neurologist and make the appointment with the opthamologist.

How are things going with you guys?

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Weekly Wrap-Up

Weekly Wrap-Up

I am going to start doing a wrap up post at the end of the week because it would be nice to be able to look back at it. It is also a great way for you to see all the posts that I posted over the week and you can check them out if you missed them. I also am going to post anything that happened during the week that I want to remember or that you might find interesting.

This week I had 4 post that went live.  This weeks quote was by Marcus Tullius and it is about being humble.  If you missed it you can click right here to check it out.  Then the next two days I had book reviews that went live.  I posted reviews for If I Say No by Brandy Jellum and Remember The Lilies by Liz Tolsma and I loved both of these books.  If you love historical fiction novels than I would recommend Remember The Lilies to you and if you love suspense novels than I would say check out If I Say No.  The last post from this week was about things that made me smile this week.

There are a couple of things that I want to let you know that are coming up next week.  I have and Multiple Sclerosis update coming up because I had a new MRI & I also found out something that I want to record so that I remember when it started happening.  I also have an adoption thoughts post going up next week as well because some things happened that I want to write about and get out of my head and hope that it helps me deal with it better.

That is everything that I wanted to update you on for this week.

What did you love about this week?

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Multiple Sclerosis Tuesday-Updated Treatments Post

MS

This week’s MS Tuesday post is going to be an update to my post where I talk about the treatments there are for Multiple Sclerosis.  If you want to check out the original post you can click here but I am going to copy and paste the old post and updated it with the new treatments that have come out since that post was originally published.

I am going to do a small overview of the different Multiple Sclerosis medications out there right now.  I want to start by saying that there is no cure of MS right now.   There are a few medications that will hopefully slow the progression on the disease.

The first group of drugs are called Immune modulating drugs. They work by keeping the immune cells from interacting with other cells.  This group consists of 3 different drugs they are called Betaseron, Rebif, and Avonex.  There is one other drug that is under this type of medication and it is Copaxone.  This one is made of amino acids and works differently than the interferon’s.

There is Tysabri that attaches itself to the blood brain barrier and doesn’t let immune cells into the brain.  There are several other treatments such as: Novantrone, Cytoxan, Imuran, Rheumatrex, and Trexall.  All of those treatments are drugs that will suppress the immune system.

Since I posted the original post they have come out with several pill’s that you can now take.  Before you had to have shots and/or an infusion so coming out with pills was huge for people who have MS.  The names of the pills are: Gilenya, Tecfidera and Aubagio.  I don’t know much about the new drugs out because right now Tysabri is still working for me so I am not in a hurry to try any new medication right now.

They will sometimes give a person steroid treatment if they are having an MS flare up or relapse.  I have been given steroids several times and I will always refuse them now.  I don’t think they really didn’t anything but make me gain weight and make my eyes see funny colors.  I can see why they do them but I would rather have some disability than deal with the side effects of the drugs.

I have taken several different MS medications and if you would like to know which ones I have taken and how they affected me please let me know.  There are also medications that we are given to help manage side effects of medications and also to deal with how the disease affects each of us as well.  If you would like to know anything else please let me know!

The sites I used to get the information for this post from: 
http://www.emedicinehealth.com/understanding_multiple_sclerosis_medications/page6_em.htm#inter (original site I used)
http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/treatment/con-20026689 (new treatments info)
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Asking For Help!?!?

Asking For Help

Today I am going to talk about asking for help and how I have a super hard time asking for help and I also have a hard time accepting help.  I am sure the reason for this is the fact that my grandma hardly ever asks for help.  I have found that I never ask for help.  I feel like I don’t even know how to ask and just thinking about asking for help make me nervous.

As for accepting help I find that I don’t really have people offer to help so I don’t know have much experience with this.  I do know that the few times someone has helped me I feel bad because I think I should be able to do everything myself and hate when I can’t do something.  I do ask for help at work because I am the first to admit that I don’t know it all and even if I did know it all there is no way I can do everything, even if people think that I should be able to.

I guess the hard part for me is I don’t really have anyone who is close enough to me that I would trust to ask.  I say this because I could use help at times with things that are personal and I also would never ask for help from people I don’t know and trust.  I am lucky that now the Multiple Sclerosis isn’t bad enough that I need tons of help.  I am really not sure what I will do when or if I ever get to the point where I have to ask because I am not sure I will be able to bring myself to be able to do it.

Those are my thoughts on asking for help and having people help me.  I need to figure out how to ask for help and how to accept help because I am sure I will need to in the future and right now I feel like I have no idea how to do either.

Do you have a hard time asking for help?  How do you combat it?

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

MS Tuesday-Latest MRI & Update

MSI had an MRI the last Saturday in August and I just had my 6 month appointment with my doctor so I wanted to write a quick update.  I am sure most people aren’t really interested in these updates but I want to be able to look back later and see what has changed and this is the easiest way to record how things are now.

Anyway let’s get on to how things are for me now.  For the most part things are okay.  I mean I don’t feel good hardly ever but I am starting to think that this is my new normal and because of that I am not going to really complain about it.  I know things could be so much worse for me so I am trying to stay positive about everything.

My latest MRI showed that I am still stable and there are no signs that I am developing PML so I can still stay on the Tysabri.  Which for me is a great thing because it is the only thing that has ever kept me stable so for me it does work and I don’t know what I would do if I had to stop taking it.  I know that there are pills out now but they are still so knew that I don’t want to start on them until they have been out longer.

This is also the first appointment in years where we didn’t change any medications and we just are going to keep doing what we are doing and see what happens in the next few months.  The only real change is the fact that my doctor wants to start seeing me every three months now instead of every 6 months which isn’t a huge problem just more time-consuming is all.

So all is all I am still stable and nothing much is really going on so I can’t really complain about things now.  I have the MS Hug happen a few times in the past couple of weeks but it is hard to say that is what it is when it could also be my back injury so who knows about that.

If you have any questions or requests for something you would like to see please leave them in comments!

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

Something I Learned Last Month

Some Thing I Learned Last MonthThis week for the writer’s workshop I am going to write about something that I learned the last month.  I learned a few things but the one thing that sticks out to me is that ALS sucks.  I knew about ALS before the ice bucket challenge blew up but I really didn’t want to think about it because even before I looked into it more it still scared me.  I had the honor when I worked at a nursing home to take care of a patient for a couple of weeks who had ALS and that was the first time I knew anything about the disease.

Since the ice bucket challenge has been so big I wanted to know more about the disease and it truly scared me.  It is the one disease that makes me glad to have Multiple Sclerosis.  I mean it does still suck to have MS but in the grand scheme of things and problems that I could have MS is nothing.  I am so thankful that there are at least treatments that slow if not stop the progression of the MS so that I can hopefully have a great life and not end up in a wheel chair.

I can even imagine how scary it has to be to know what is going to happen and know that there isn’t anything or anyone who can stop it or even slow down the progression of the disease.  Not to mention what happens to you when you have ALS scares me as well because I think one of the scariest parts of the disease is to be all their cognitively but not being able to move or communicate with everyone around you.

I found a YouTube channel made by someone who is only 26 and was diagnosed with ALS.  It is even scarier for him because his grandma & his mom have/had the disease so he knows what he will be going through and like I have said throughout this whole post I can’t even imagine how scary that has to be.  If you want to check out his channel you can click here.

So that is the biggest thing I learned the last month.  What have you learned???

 

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