Oh MG

MG warrior

So each time I go to the hospital now I feel like a celebrity. The nurses there are so sweet and I love them so much and they I feel like after 2 years there with them we have been through everything. I mean they have been through all my most personal moments that’s for sure.

But lately, when I have gone it has not necessarily been for any service of my own. I have gone to visit my Uncle or for quick lab work or something of that nature. And while I am there if it’s at the end of my work day I swing by the unit that does my plasmapharesis (plasma exchange treatments). Nearly each time I have gone they are excited to see me and ask where I have been because I have been one of their special cases and because it has been so long since I have been in that they almost worried that something had happened to me, lol. I told them that I working to only have to come in only 3-4 times a years as opposed to my usual 6-8 week intervals and they were shocked. Having just made 12 weeks they were even more shocked and excited.

Then they keep asking me to speak to every MG person that is currently in the room when I drop by. Each one asks me a million questions which I am happy to answer as long as they do not mind. I answer until I noticed they are too tired to answer. I may start giving out my card with my email so that they can continue to contact me afterwards with questions. So far each of them have said they have not had much luck with local MG groups in the area and have struggled getting help with answers to normal questions to struggles we have. Like tools we can use, services that are offered and normal side effects and issues we may encounter drug interactions. I told them I had to find a lot out on my own, that I had many of the same issues, and that I had not been diagnosed much longer than them, only 12-18 months longer (I’m just over 2 years) but that I was vigorous in my questioning, poured over research, and then found dailystrength.com and blogging as 2 great resources. Without them I was quite in the dark.

The information you learn online in your normal search is neatly packaged in a sterilized neatly defined bow and you have to learn to dig deeper. You have to learn to ask the right questions. And sometimes this is hard when you have just been diagnosed and are not sure what those questions should be. When I was first diagnosed my only question was could I still have a baby. I got mixed answers and it was not definitive, and then as I did more research and MG became more recognized in the last 2 years I found some doctors that had definitive answers but this was also linked to knowing what medications I was on, which at the time of I first asked my question, I was unsure which medication I was to be put on (cell cept, imuran, etc).

I feel proud to be able to give information about MG. Letting people know that you can go longer than you have before. I was once in their shoes unable to go more than a few days, then weeks without treatment. Now I can go months. You will learn how to push yourself to greater limits without harm.You will learn how to rest, and you will learn how to feel your symptoms and say I need rest but I can tough it out just a bit longer. My insurance is knowing I have a suction machine at home, and knowing if I need to I can crush my mestinon up and place it on my tongue on the roughest day and still get through on dehydrated days and refuel but I have not had to do this is over 6 months. I am learning where my breaking point is.

I still have anxiety once I begin to have a bit of difficulty swallowing and think that I may begin to choke but I think instantly I must calm myself and find my water and just breathe because obviously I am still doing that, lol. Or if I am struggling even more so, I must cough until my throat is cleared. Then I feel better and just relax. I do my best not focus on these tough spots but on the fact that they are fewer and farther between than the last time and that makes me feel amazing. My last one was 12/14/15 where I was choking in my sleep and only got an hour of sleep. However, I believe it was because I had hardly had much to eat or drink all day and then had something fairly acidic right before bed (causing passive reflux) and we already have mucus issues with MG. So I struggled all night. I kept waking up gasping for air as my airway kept getting blocked with mucus. It is so frightening. It hasn’t happened to me since well before August and I should have known better. Let’s just say I learned a hard lesson and along with that anxiety came a new found determination to be smarter.

I pray that from this post today, MGers all over learn that small steps can take you a long way and that you will not always be where you are now. Things can get better. They have even made advancements now that have been approved where there are new drugs that do not suppress the immune system to take in place of cell cept and imuran. I may be switched to these soon. I will let you know how that goes if this is the case. However, stay strong, know that if you have set back it is only temporary. Learn from it, use it, embrace it. We have MG but it does not have to run us.

Day 27 of the #loveme Challenge…What have you accepted about you?

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I have accepted many things about myself. The biggest thing I have accepted about myself is that I cannot change the past and that I must forgive myself for the things I did and if I can apologize to people I ave wronged do so and I cannot (because they have passed away) that I must pray for forgiveness and accept that I must make a change to learn from that circumstance and be better for it. I have learned that it is hard for to forgive myself for some things and that I am harder on myself and anyone else could EVER be. I have had to accept that I will learn to be better at this over time but that it is a work in progress, so far reflecting on it I have come a long way but I am not 100% great at this yet. I Look to the Lord for help with this and it gives me peace and each day gets easier and hurts less and that means I am healing. I have come to the point for many things that I use to have trouble with that I actually found that one day I wake up and I feel resolved and I just Thank God. For some things I still struggle and I know it is okay because one day I know I will get to the same point with those things.

Let The Healing Begin…Dropping My Bags

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SO many of you know that I suffer from anxiety. I have most of my life and was not diagnosed until I was 15. This came at a time when I felt like I was drowning in my anxiety. Many teenagers feel like this however. I was finally at a point where I could not always control how I felt. I had outbursts of crying, rage, and just retreated into myself. Most of my friends would not see it but the people I dated saw it often. Heck these poor guys probably thought I was bananas! My poor journal read like a manic harpy and I was constantly thinking of running away or some scenario that would bring the world to remember me as well as some tragic way hand print to leave on my mom. Oh the epic fight of mother and daughter. When I think of it now it seriously makes me laugh so hard I cry! I remember sitting in my room and fuming for hours of how one day I would just curse out real good, LOL. I thought one time secretly of slapping her. But I took it back instantly. If you ever met my mom she is a very VERY thin woman. I feared ever hitting her because I knew I could probably really hurt her or worse and I didn’t want to do that. Just make her mad or make her see my point and back down. Make her see I was right…Though I rarely was back then. The only department I may have been right in was maybe having a bit more attention instead of the negative reinforcing attention my brother got for being bad.

My anxiety seemed to stem from very young. My biological mother (whom I also call mom) is a recovering drug addict. She has been sober for over 9 years and I am the proudest cheerleader for her! However, when I was toddler and she was going through her addiction she did some less than favorable things which included abuse/ neglect by legal terms. The best decision she made while trying to find herself and then eventually becoming sober was hand guardianship over to her aunt and uncle whom I call mom and dad. There may be some anxiety stemming from this however I think that most of it comes from this next bit. My younger brother whom I loved and adored was always with me. I cared for him like my own baby. Though he was only a year younger than me I protected him and cared for him during those rougher years. He loved me too. Then when moved to my aunt and uncles (our ‘new mom and dad’s) house he changed. He was not the loving brother I remembered anymore. He was mean to me. But it was not all of a sudden. At first he still clung to me. I still did everything for him and my parents said let him speak for himself. Let him do this and that for himself. It caused me problems to see him struggle with this. He eventually got it though. I guess I had more problems with it than he did. However, then he began to change. He would taunt me, and call me names…normal brother stuff at first. Then it escalated. He would call me more harsh names behind my parent’s back. He would say things about me that were not true at school and start rumors about me that were horrible. He would tell everyone at school when my menstrual cycle started and tell them when I got in trouble at home and what it was about.

Nothing was off limits to him. He did anything for a laugh and it was always at my expense. It was horrible. He would call me a whore, a slut and the like yet I was a virgin. Guys would come up to me with expectation and wanting to date and dump me after a week because I was not ‘putting out’. Eventually he got bold and started to do these things in front of my parents and they started seeing his behavior get way out of hand. However, at this point things had gotten so bad there was not much they knew to do. They had tried everything at this point but he was nearly a grown man.

My dad always said the boy needed one good butt whooping from some kid and that would fix him. Apparently that never happened or worked it it happened secretly. My brother my brother turning on me as I felt happened was a hurtful and sore spot after all those years. I would try to do things that interested him and he still had no interest. He was only interested in being a BRAT or hoodlum after a point. I could not be that person. I was not a ‘bad’ person or a criminal. I knew the people he hung out with and what they did and I could not do those things. I thought that he wanted to go to college and I even offered he come stay with me in my apartment under the condition that he either go to school or work. It never happened. He graduated school and went to New Jersey. There he did ok for a living with another aunt and got kicked out after starting his usual antics. Then not long after that he got in BIG trouble. I thank God constantly because I was not far from making the same decisions my brother did, but something told me NO. It had to be God but honestly I told myself at the time it was my friends, it was my drive not to be like him for how he hurt me, it was my thirst for education. Little did I know…

Many can see why I have a lot of anxiety. Those closest to you know how to push your buttons and cause you the most grief. He surely did and does. Recently I sent him a letter explaining how though he may call me sensitive among many other words I became an advocate for bipolar people due to him and my biological mother. I want to help people like them. He is considered severely bipolar among other comorbid issues. I also told him that all I ever wanted was to be accepted by him, the one full-blooded brother I had (because I have many other half siblings by my biological father) who went through everything I did and whom I have loved since the day I saw him and cared for him. He is the only one who knows ‘US’. He finally apologized! There was no sarcasm, no cursing, no if, ands, or buts or retaliations. I was almost scared to receive the next letter because I was expecting him to send a response with something mean Like I’m sorry but you it was in the past and you shouldn’t be so sensitive and so on and so forth. I had a whole arsenal ready. Of how he didn’t get to pick what hurt me and what didn’t and so on. But it quickly deflated and melted away when I saw that! All that emotional baggage just started dropping one by one. I just stared blankly at the letter. I was just stuck reading and reading that line. It felt good to finally feel like I could move past that. To feel like after over 20 years of a battle nearly 30 years of a relationship could feel like it was finally beginning to HEAL!

Day 17 of the #loveme Challenge

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One of the oldest things that feed my soul would have to be music! I am a huge music lover. I sing, play several different instruments including clarinet, xylophone, and some piano, and I write music. I also learned how to actually compose music as well when in high school but I am very much ┬ábeginner at that. Music ignites my soul though. It calms me when I am at my breaking point and it fuels me when I need that extra bit to get through my day. It is always changing and never ceases to amaze me and I can listen to some songs on repeat all day long. I love all types of music from classical to rock; from country to grundge, I listen to it all. I listen to some rap but I am not really a fan of hard core rap. I cannot alway rap my mind around the severe cursing but I can enjo the beats. Even when I do not always like a song I can usually still find something about it I like. However, I usually prefer to listen to it on me of my devices so that I can manipulate the different aspects so if I don’t like the words so much I can turn down the treble and and not and turn up the bass and or increase the speed and so on. I enjoy this stuff. I could go on and on but the bottom line is music burns deep within me. It holds a special place in my heart and has healing powers for me. It reduces my anxiety and when I am struggling with my MG it helps me to relax, focus, and helps me control my symptoms.

Healing and Escapes

music and water

We all need to find what works but as with every disorder, illness, and bit of stress we encounter we have to find a way to ease the pain or symptoms. Typically we can soothe the beast with with dissociation. I find that by calming the spirit or the mind with music or water is most helpful.

Water is known to have a so many healing properties and that is why there are spas everywhere but you do not need to spend loads of money to enjoy a spa experience. Even the sound of water such as a waterfall or stream is said to have therapeutic effects. We use water to reduce inflammation, increase circulation, and hydrate our bodies. Yet I use water to feel like I am flying. I have been a swimmer for as long as I can remember and I combine swimming and music now with my underwater music devices and now I swim longer even my scuba or snorkel gear and wish I could live underwater. I am weightless and it gives my joints and body relief and allows me mental freedom to just float and let all my stress float away as well.

Music also has healing properties. It has the power to make us feel! We can feel sad from a song about a lost love to happy about new love. We can feel inspired to keep trying not only through the music but by the words that are used in such an elegant and poetic way with the seamlessness of the music. You have to be selective though because music can make you feel…and that includes like I stated sad, angry, or negative. I use my music to push through a workout and to heal my soul when I feel at my lowest point. It helps to inspire me and uplift me. I tend to listen to a lot of neosoul, contemporary gospel, and upbeat R&B with a mix of Latin/ reggaeton at times. I LOVE to sing and dance, LOL.

There are also other outlets such as arts and crafts, ┬áthat I participate in like crocheting, painting, and creating pottery. I also enjoy online gaming with friends and my husband. In addition, hanging out with family and friends helps ease my stress as I have an outlet to eat and be merry. It’s always good to have good times and hang out and not talk about “your disorder” and just enjoy life.

Find your healing and escape, we all need one sometimes!