Hot as hell!!!!!

Today has been so flipping hot! It was raining and muggy the last couple of days and now it's in the 80's, wtf????? Global warming I guess. Anyhow my body hates the heat. It makes me tired, confused, grumpy, sweaty, sad, frustrated and annoyed. I can get lost in the parking lot just because its too hot. I hate it and this is just the beginning. Good thing I have a cooling vest that I wear only in the house cause it is not attractive. I have also been using ice packs on my neck and wrists(cooling points) before bed. 

I decided to go back to school and registered in a statistics course for the summer session. It was 6 weeks and I knew it would be hard but thought I could manage. I thought the material would be hard not getting through all the homework. I only lasted a week and had to drop out. My body could not handle all of the hours of homework everyday. At least in a regular semester it would be more spread out and I would have a break during the week. I was exhausted after one week that just goes to show how much my body has changed. I am still figuring out my new body and what I can handle. I am ok with deciding I can't handle something at the moment but will try again in the future!!!  

Never be the same.....

I remember when I was able to go out every night, drink and have fun, sleep a few hrs go to work and then do it all over again without a glitch. When I drank too much I dragged ass a lil but I was still good. That has all changed now and sadly will never be the same. The last time I drank was almost a year ago and it took me almost 2 weeks to recover! I loved going to the club with my friends, loved Vegas, just loved partying. Now I can't drink can't stand the heat and get tired easily. Thank you very much MS for making me a 40 year old housewife I truly appreciate it. It makes me really sad, frustrated, angry, jealous, annoyed (and many more emotions) that I cannot go out and forgot about all my worries and issues. I don't have that luxury they are with me 24-7 if I go somewhere they go too. Another great pleasure of living with this ugly ass MonSter 😡😡😡😡😡

Father's Day

Yesterday was not a better day. Normally the increase of meds takes about a week to start taking effect so I'm waiting patiently. I had a horrible nights sleep even on a bunch of sleepy meds. I woke up throughout the night then slept later than I could. I could not even get through fixing my hair without crying. Thank goodness for makeup! My MS support group was today but I was not really into so I excused my class early lol I then went to a graduation party for a young lady I watched grow into a woman. Time flies and kids grow into adults. I don't want to start thinking about my own kids because it will for sure bring on a crying spell. Shit too late....... It is past midnight and its Father's Day, woo hoo! I have a wonderful dad that I could not live without and me and my son went and bought him a cool screw driver thing. We're also going to do some chocolate dipped fruit and make dinner. I get to wish myself Happy Father's Day because I am mom and dad to my kids. Wish I could be happy but I can't right now. I honestly though MS was going to be my worst enemy but the real MonSter is depression. Depression blows and I wish I could be happy for longer periods of time. I hate when people tell me just be positive stop stressing its all how you look at things. Fuck you!!!!! 

Depression sucks..... No shit Sherlock!!!!!

It slowly creeps up on me and then is set off by a trigger and full blown depression is back. Sort of like a buzz that creeps up on you then has you slurring your words and stumbling around. I am explaining all of this to my Psychiatrist how I have slowly been getting sadder and sadder, my sleep is back to non existent, I'm emotional binge eating, crying all the time, very irritable, walking around with a fake smile. The black cloud is right over my head again and won't go away. So then my psych tells me "Sounds like your depressed again, Depression sucks!" Really I didn't know I was depressed and definitely didn't know it sucks. Can you answer my questions though, why doesn't it just go away? Why can't I be fine for longer periods of time before increasing my dosage on meds? Why am I so anxious all the time? Why doesn't anyone understand or at least try? Why me? Why, why, why?????? Cannot give me any of the information I need but he asks, "are you suicidal?" I don't have a plan to kill myself but do wish I could go away since I feel more like a burden than any sort of positive part in anyone's life. I am to much of a chicken shit to off myself but times like these think it would be easier than continuing on feeling like this. I must have done some real terrible shit to someone to deserve all of this sucks that not even medicine can keep me sane!!!!!

My MS Story

My MS Story

Getting my MRI results and hearing the words Multiple Sclerosis mentioned will forever be engraved in my brain. I will never forget that day or the months following. MS has forever changed my life. I am a mother of two children and I am now living with Relapsing Remitting Multiple Sclerosis. Although I was just recently diagnosed I have probably had it for some time.

I went to my doctor because I was having an abnormal headache that was lasting weeks and we both decided that I needed to have a brain scan. We decided on an MRI to make sure there were no masses or tumors. The funny thing is that I wasn’t even worried about that. Now I wish it would have just been something that could have been removed. A couple of days after the MRI I got a call saying she wanted to see me and go over the results. I knew this could not be good, but had no idea what to expect. She gave me the results and said she was still not sure if MS was what was going on with me. She decided to send me to a neurologist so he could make the final decision. From this point forward I was in a daze. Probably MS fog as some may call it. I had a feeling for quite some time that there was something wrong. I thought that it would be something fixable. I had no idea that I would be living with an incurable chronic illness.

I met with the neurologist within a couple of weeks after getting the news and he agreed with the MRI results. He said I had multiple lesions and they all looked like MS. We talked about treatments and he assured me it was not a death sentence. I left that appointment feeling completely helpless and decided it was time to tell my parents. Boy was that hard! My parents had already dealt with my sister having an auto-immune disorder. They went through so much with her illness and it tore them apart. My sister is well now because she had a kidney transplant that was donated by my older brother. I had already told my sister and we thought it best to tell my dad first. His mom had MS and so we already knew some about it. I am the baby of the family and I am sure we all thought our family was clear of the bad luck. My dad met me at my daughter’s volleyball game and I told him the bad news. He was quiet and just looked really upset. He is always quiet so I was expecting that, but he did tell me that we would get through this as a family. When I got home I waited for my sister and dad to come over. We all knew we had to be there for my mom because she was going to flip. We all sat down and I told her the news. She immediately started crying and blaming herself. She could not understand why yet another one of her children had to go through this. I told her that I would be fine and her response was, “Your fine now, but what about later on?” It then that it hit me that I did not know how my future was going to pan out.

I started to think about my kids and their future. How was I going to take care of them if I was in a wheelchair or couldn’t leave the house? What if one of them gets MS? What if I can never have kids again because I won’t be able to take care of a baby? All of these things scared me. I decided to tell the kids one night, as I was putting them to bed, that I had MS. My son started crying and asked if I was going to die. My daughter was quiet, but I could tell she had questions. I didn’t really know at the time how to explain it to them. At this point in time, we had no idea how our lives were going to change, or how I was going to change as a mother.

My neurologist wanted to do a Lumbar Puncture to verify the MS, but I already knew what the answer was. Although I was hoping it would come back negative, deep down inside I was sure. I had the puncture about a month after the initial MRI and it was horrible. I ended up having a spinal headache and could not get out of bed without being in excruciating pain. Two days after the puncture I had to go back to the hospital and have a blood patch so that my spinal fluid would stop leaking out. I was out of work for a few days. I kept calling my neurologist to see if he received the results already, and then one morning at work I got the call I was dreading. He told me my results came back and it was 100% MS. He said I have the most common form and I should start thinking about treatment. He told me it is unclear whether or not it is an autoimmune disease, but I should treat it as one. I started crying on the phone with him and had a really rough day. I called my mom to tell her and she told the rest of my family. I was on an emotional rollercoaster that was going to be never ending.

I started researching, reading books and searching for other people with MS to connect with. I also started looking for a local support group and found one through NMSS. I called the facilitator who was in the hospital at the time, so I was told to call back in a couple of weeks. When I finally got in contact with her she gave me the info about the group. She also gave me some suggestions on diet and other supplements. She said I should start thinking about a disease modifying treatment as soon as possible. I started feeling fatigued and sleepy all the time. My mind was not working the same and I could feel things changing. I have daily headaches, pain, numbness, dizziness, and imbalance just to name a few. I don’t even remember how being well feels. I was a medical assistant for 6 years before my diagnosis and had to stop working because my health was getting in the way of office flow and productivity. I also had to decide whether working or taking care of my family was more important to me. My boyfriend was very supportive with this decision even though we would be losing income. I chose my family and am now a stay at home mom. My life is now waking up getting my kids ready for school making my boyfriend lunch then getting back in bed and waiting for them to come home from school and work.

I had already talked to my neurologist about treatments at my first visit. The ones we talked about were all shots. I hated shots. I decided to start a once daily injection. I was having really bad site reactions and was so anxious with every shot, I absolutely hated it. I talked to my neurologist about a once a month IV infusion and decided I wanted to try it. I heard that there are little side effects and it could reverse damage and help with daily symptoms. I was very excited and wanted it now. We ran it through my insurance and realized it was going to be too expensive for me. The little ounce of hope I had in feeling better was once again taken away until I met a young lady at an MS conference. We talked about treatment and she said she was doing the IV infusion and loved it she had wonderful results and said I should not give up. She suggested I find out about financial programs and call the pharmaceutical company to see if they can help with the cost. I talked to the hospital where I would be getting the infusion treatments at and found out that I was approved for a financial assistance program through them, meaning I would pay nothing for my treatments for one year. My hope has been restored. I hope and pray that this medication will be my miracle and lead me on a new path on this MS road.

There are so many inspirational people with MS out in the world and I want to be one of them. I have taken over the support group as group facilitator for a few months now and want to do so much more for people like me with MS. This short excerpt from my new life with MS will hopefully give others hope. Don’t ever lose faith. Where there is a will, there is a way!

Invisible Illness Awareness Week

1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: April 9 2012, a day I will never forget 
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: trying not to be super-mom/wife, I cannot do everything everyday and I am okay with that now 
5. Most people assume: I will be in a wheelchair
6. The hardest part about mornings are: getting up out of bed after not sleeping all night 
7. My favorite medical TV show is: House 
8. A gadget I couldn’t live without is: honestly my Kindle
9. The hardest part about nights are: not being able to sleep, being too hot, too cold 
10. Each day I take 7 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried adjusting my diet, tried not doing any treatment, still TRYING!
12. If I had to choose between an invisible illness or visible I would choose: neither, I really want to be illness free!
13. Regarding working and career: who the fuck knows at this point, can't really make any plans yet 
14. People would be surprised to know: I can hardly go grocery shopping on my own it is too much of a daunting task and I get really overwhelmed
15. The hardest thing to accept about my new reality has been: not knowing what is going to happen and the day to day changes in how I feel 
16. Something I never thought I could do with my illness that I did was: so far there hasn't been anything, hopefully one day I will be able to jog again but at this point it hurts too much 
17. The commercials about my illness: haven't seen any, hopefully with some celebrities getting diagnosed there will be more publicity for the disease 
18. Something I really miss doing since I was diagnosed is: drinking alcohol, can't drink makes me feel like I got hit by a train for days afterwards 
19. It was really hard to have to give up: the above
20. A new hobby I have taken up since my diagnosis is: research and blogging which I have been slacking on
21. If I could have one day of feeling normal again I would: spend the day outdoors in the sun walking enjoying my family 
22. My illness has taught me: the true meaning of "never count your chickens before they hatch" you never know what will happen and can never be prepared for something like this 
23. Want to know a secret? One thing people say that gets under my skin is: "I know so and so that has ms and they are fine they still do everything that they used to" I want to respond with "every ms case is different so fuck off!"
24. But I love it when people: give me sound advice, ideas and offer help(and actually give the help and not just say it)
25. My favorite motto, scripture, quote that gets me through tough times is: "it is one of the most beautiful compensations of this life that no man can sincerely try to help another without helping himself" I have to help myself first or I am useless
26. When someone is diagnosed I’d like to tell them: hang on its a long bumpy ride that never ends, make sure you have a strong support system and get rid of all the negative people early on you will know who they are 
27. Something that has surprised me about living with an illness is: living with an illness
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me food, I still love to eat!!!
29. I’m involved with Invisible Illness Week because: I would love to make invisible illnesses visible so everyone can see what we all go through on a day to day basis, this awareness week will have to do for now
30. The fact that you read this list makes me feel: very anxious and hopeful that at least one person will learn something from me 

Tried this candy through a campaign from BzzAgent. I was very happy to find something that I could feel less guilty about eating. These days nothing is really making me happy but chocolate can somehow always bring a smile on my face. I had the unreal5 chocolate caramel nougat bar and it has no artificials, hydrogenateds, corn syrups, preservatives or GMO's. This is definitely going to be one of my favorite candy bars when get a craving.