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)
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

Multiple Sclerosis Tuesday-My Current Thoughts & An Update

MS

I thought I would so another Multiple Sclerosis Tuesday post this week.  Instead of talking about anything in particular I would just write down some thoughts I have been having about MS and a little update on what is going on with me right now.

Lately I have hated the fact that diseases like MS even exist.  I have gotten to know so many people that have auto-immune diseases and it just piss’s me off to know that god lets people suffer like we do.  That being said I know it is in his plan for all of us and that he gave us these things because he knows we can handle them.  I know that it is true but I often wonder if at times we aren’t given more than we can handle anyway that isn’t the point of this post.

I also have been wishing that people would stop judging those of us who have MS and think we are lazy because we can’t really do much.  Now that being said I for the most part can keep up with anyone and if I don’t tell you I have MS right now you can’t tell.  Even my own family thinks I am lazy because when I get home from work all I want to do it take my bath and go to bed.  People don’t take the time to ask or even realize how much energy it takes for me to just make it through my work day.

As for an update on me nothing much has changed since my last update.  I am back to getting my headaches almost every day again but I thinking that is just a part of the MS for me.  Also my Psoriasis is back with a vengeance which totally sucks.  It isn’t really the fact that it itch it find I am more embarrassed but it than anything else.  I mean it does hurt if I find myself scratching it but other than that I can ignore it.  I am glad that I wear a jacket all the time at work because it just makes me feel self conscious about myself.

That is all for this post.  If there is anything at MS that you would like to know more about please let me know in the comments below and I will make sure I get it written for you.

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Summertime & Multiple Sclerosis

Summertime

I am going to write about what summertime is like for me having Multiple Sclerosis (MS).  For those that are new or don’t know I live in Utah so it does get hot here in the summer and super cold in the wintertime.  We usually get into the upper 90’s slash low 100’s during the months of July & August and sometimes it can hot earlier than that.

Anyways now back to the topic at hand.  Those of us that have MS don’t do well in the heat.  The heat makes any MS symptoms we may be suffering from even worse than they usually are.  We also get super weak so we have to try and avoid overheating.    In this post I am going to give you some tips that I use when I am out shopping or at work to try and stay cool during the summer months.

The first thing  I do during the summer is try and not go out in the afternoon or early evening because that is when it is the hottest.  If I have shopping to do I try and get it done first thing in the morning so that I am not out during the hottest parts of the day.

The second thing that I do when I have to go out during the afternoon is try and park and close to the building so that I do not have to walk super far.  If I am with someone else and they are driving I will try and have them drop me off at the door and avoid walking through the parking lot.

The third thing I do is keep ice packs in the freezer so that when I am leaving work in the afternoons I can have it to keep myself cool.  My grandma thought of this one and I have to say that I loved it.  The exterior and interior of my car is dark in color so the inside of my car is always super hot after it has been sitting out all day so having an ice pack to put behind my neck while I am driving is a great way to keep my cool until my air conditioning in my car to cool the car down.

The forth thing that I do is leave my sun roof & windows cracked so that there is some air flow through the car.  This one can’t be done all the time because of the wind and things like that but I do try and do this one everyday because it also helps keep the inside of my car cooler on the super hot days.

Those are the top 4 tips I have for keeping cool in the summertime.  If you do anything different please let me know because I am always looking for other things to try.   Also if there is something about MS that you would like to know please let me know in the comments and I will make sure to write another post about it in the future.

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

MS Tuesday-Crazy Things I Deal With

MSI was reading this post last week and I loved how it described what some of this things that people Multiple Sclerosis go through and it made me want to list a few of the things that I deal with because of the MS.  I know that people who are around me don’t know what I go through most of the time because I am not the kind of person who complains or even talks about what I am feeling so I think this list will help others who are newly diagnosed to know that they aren’t alone.  So here goes the list:

  • Right now the number one thing I am dealing with is insomnia & extreme fatigue.  I wish there as a way to explain how it the fatigue I am experiencing is different from just a regular person feeling tired.  The best way to describe it that I can come up with is that it takes to much energy to even breath.  If I could stop breathing I would because it takes more energy than I have at that moment.
  • My fingers have been totally numb for about 6 years or so.  When it first happened it was scary because I couldn’t type or really do anything.  I taught myself to type and how to do everything that I used to do.  The reason that this bugs me is because there are somethings that I touch that I have to drop because I can’t stand how they feel on my fingers.
  • I get random shooting pains that come out of no where and go away as quickly as they came.
  • Headaches/Migraines: I have been struggling with these before I was diagnosed.  I am pretty sure that the migraines I get are part of my MS because they have never really said one way or another.
  • My legs just deciding that they no longer need to work when I am walking or when I go to stand up from sitting.

Those are the main things that I deal with on a daily basis.  I know there are more things but because of the whole lack of sleep and fatigue those are the only ones I can think of.

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Sick & Tired

Sick of multiple sclerosis

I know I have written posts about this in the past but right now it is something that is bothering me again.  I am so sick and tired of Multiple Sclerosis right now because I am tired of feeling like crap.  Everytime I go to the doctors they are switching up medications to try and make me feel better but nothing ever works.  I am just tired of everything that has to do with Multiple Sclerosis and just not feeling well.

I know my situation could always be worse which is why I don’t talk much about how I am feeling but I have reached a point where I need to write about how I feel so that I  can at least get it out and off of my chest.  I also know that in the world of MS I have been relatively lucky as far as the disease progression goes but like I said before I am just sick of the disease.

I am sick and tired of being sick and tired.  I know there really isn’t anything people can do about this at this point but I still wanted to write this because I don’t know that I have ever read a blog where someone with MS was totally honest about how much the disease sucks.  I know this will pass and I will get back to the point where the things just roll off of my back but right now I just want to bitch about it.  I also want to let others know that it is okay to be pissed off about what the disease does to us.

I am also tired of people thinking I am lazy because after I get off work the only thing I want to do is go home and go to bed.  I wish there was someway for me to explain to others how tired I get going to work everyday.  I wish I could find something to give me more energy but as it stands everything I have tried just makes things worse.  I know if I could sleep I wouldn’t be as tired but like usual my health insurance company sucks and they won’t fill the one medication that does help me sleep and I can’t  afford the medication without it being covered.

Anyway I am just bitchy and sick and this is what happens when I feel like this for months on end.  How are things going for you guys right now????

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