I was asked the question “How do you manage mg and marriage?”
Truth is it hasn’t been easy for several reasons. In the beginning it was all about learning and coping. I spent more time in my support groups and on my computer researching then I did with my own husband. Even though he worked an average of 10 hours a day when he got home I was either cooking cleaning or still doing research. He did let me know that he was bothered by how much time I spent letting mg consume me than I did living. He even decided to start researching with me so I wouldn’t be alone but at the end of the day still wasn’t us spending quality time together.
As the years pass things got harder. I soon became unable to really enjoy life and he became helpless. There were things that I needed that he could not provide for example I was always in pain and there was nothing he could do about it. There were also times that I could not eat or breathe on my own and all he could do was sit there and watch. As a man who made a bouncer protect and care for his wife no matter what, he felt as if he had failed. I mean you got to admit watching your husband or wife suffer in ways you can’t imagine will literally drive you crazy. Within that helplessness I became hopeless myself. I felt like I was holding him back from enjoying the life that I knew he in the children deserved. I felt as if I was going to die and I was ready to let him go. Knowing that, he still stood by me and press through. He went through the emotional mental and physical roller coaster with me.
In all honesty, the hardest part about MG and marriage really didn’t have anything to do with us. There was a time when we left his home town to move to my hometown. We felt as if we would get a little more help and support than we were already receiving. In most cases we need but that wasn’t always the case. The entire time I was there I was too sick to do anything. I couldn’t even speak and I ended up on breathing machines most of the time. What sucked is no one really try to learn about the disease from us and what we were experiencing. They chose to use the internet and to listen to doctors who had no idea about my case. Within the research that they’ve done oh, they came across the famous line “can live a normal life” and ran with it. When my husband would try to advocate for me, my family will get upset and say things like he should let the doctors work as if he was making stuff up. It just seemed like everyone was against him or blaming him for this journey that we were on. No one ever took into consideration how he was feeling or even thought about what it was like to walk in his shoes. I also remember a time when I was admitted to a different hospital. There I was intubated and was on Propofol. Because I was in that hospital many years ago they had old information still on file that was from long before my marriage. At that time my power of attorney was my father and an ex of mine. I remember being woken up and hallucinating at the same time. I still don’t know what was really going on to this day. Anyways when I was woken up I was asked if I wanted my current power of attorney to be. I thought I was still out of it because I visioned my husband saying he was taking me home and I felt the bed rolling down the hall. Then my family asked me something else but I was still out of it because when I looked around I was in a totally different room. I know I was hallucinating because I never switched drums I was still in the same room that I was in the previous night. The doctor had me write everything down because I still had the tube in and couldn’t talk. I was writing things that I have hallucinated or envisioned about. It kind of scared the crap out of my mom because she didn’t understand that I was still hallucinating. Then I think the doctor told everyone what I wrote but never explained that I was hallucinating. What’s crazy is I still don’t know who I chose to be my power of attorney but they told me I try was two people that weren’t there. That situation made me feel like people were ganging up against my husband because they misunderstood what was really going on. So yes my hospital stays and my health has put a strain on my marriage. My husband knows and I’m very family-oriented and I value my family very much those situations made things kind of awkward. The way he was treated he would have never allowed to happen to me. I felt and still feel bad about it because I literally could not do anything about it and even if I was able to I feel like I wouldn’t have been taken seriously. My family has a thing about respect and if someone who spoke up to an elder for any kind of reason would be looked at as disrespectful and frowned upon.
So yes, like I said mg and marriage is a hard thing to manage. Any illness in marriage is a hard thing to manage. It will drive you crazy and your spouse even crazier. But in the end it’s all worth it. When you two are given such a difficult Journey you have to remain focused. You have to focus on life, Health and strength. Remember to find balance. You have to find balance in managing a healthy life and healthy relationship space you need to have a safe place for you to communicate with your husband or wife. What I mean by safe place is a place where you can openly and freely just express yourself or the other cannot talk or interrupt. You also must allow your spouse to have the same privileged as you have with communication. Spouses, you must try to understand that mg is now a part of your life too. You know The Unwanted cousin that no one wants to stay at their home because he or she steals? That’s mg! You can’t get rid of him or her because he or she is still family. You have to remember to make quality time for each other. Go back to the basics and do something that you haven’t done together in years that also won’t interrupt with your new lifestyle of living with mg. Play a childhood game like Uno or just sit outside on the porch together. The simple things is what makes the best memories. Remember it’s okay to talk about MG with your spouse because they are living with it too. You must acknowledge each other’s feelings. Allow them to help you and never be ashamed to ask for help. Understand that there will be times of frustration away from each of you. I still have to remind myself up these things too.
We’ve only been on this journey for going on 5 years so we’re still learning as well. It’s not easy and it probably never will be but we’re going to continue to try. This isn’t the hand we pulled but we’re going to play what we were dealt. I hope this helps someone.
Hey Good People! Its 2019!
So this year I decided to celebrate Kwanzaa with my children. I wanted my children to learn something about themselves, their community and where they come from. Little did I know of the things that I would encounter and learn along the way.
So for each day we talked about the principle and did an activity. I asked each of my children what their favorite principle was. They chose day 2 Kujichagulia: Self-Determination and day 6 Kuumba: Creativity. My favorite was day 7 Imani: Faith.
For day 2, I had my children look into the mirror and tell me what they saw today and what they want to see when they grew up. My 9 year old has autism so expected for him to take things literal which he did and so did my 5 year old. My 8 year old daughter on the other hand set the example and the boys were able to follow and catch on to what the question meant. So after they got through the first question they went on to the next. Now this is what shocked me. My daughter has always had her future planned out. She chose her college and career a year ago and makes goals for herself on her own. The only thing she added was a second business to the one she’s already working on. With boys they usually say things like sports, wrestling or video games but not this day. The 9 year old said “I want to be a nice looking man, that’s smart with a good job. I want a house and a beautiful wife with a good heart. I want to love her and her to be good to me. I want children with only her and she’ll know I’ll never leave. (We had just had a conversation about why some kids don’t have 2 parent homes). I want a big house so when our mom and dad gets old they can stay with us and we will take care of them.” He always amazes me with the things that comes out of his mouth. My baby boy is sticking to his as well. He has a “wife” at school that he’s loved since the first day of prek. They’ve planned a big wedding, picked the preacher, wedding party and everything. So when he looked into the mirror he spoke of his future plans with her. He’s such a character cause he looks at me and says “well do we have to live together cause what if she gets on my nerves?” Such a boy thing to say lol.
For day 6, we did arts & crafts for our family and played mancala! They love being able to create. They are all good in different areas of art. I guess they get honestly. They’re father and grandfather are artist and me and my mother are crafters/designers.
For day 7, I kind of spent with myself. I reflected on previous years and all that I’ve gone through because it was January 1st. I kind of broke down a little because I can’t handle another year like the past. 2016 broke me physically, 2017 broke emotionally and 2018 broke me mentally and my spirit is tired. There is literally nothing else to break with me. So the unstable thoughts in me were like just update your will and funeral plans cause if things don’t get better then maybe God is ready for you. Something is going to happen and hes going to call you home. So I wrote in my prayer journal to clear my mind and then I started on my 7th principle of Kwanzaa. FAITH! God has been testing my faith all along and I knew that but I just didn’t think that a test could be it sooooooo long. I know there are some things that I brought on myself or that I allowed others to bring on to me but I just wanted to catch a break. So then I questioned myself again. Do I really know what faith is? Is my faith as strong as I believe it to be? How can I build my faith and strengthen my faith? I have a very strong spirit and everyone knows it but faith is more than just spiritual. It requires you to FEEL, to KNOW and to UNDERSTAND. Because I have been broken down all these years physically, emotionally, mentally on top of a drained spirit, it’s putting a strain on my faith. Healing takes time and every little bit that I recover from will recover my faith. I never thought that all of this would tie into my faith. I know I’m going to be good in while but I’m the mean time I know I have to keep an eye on this area of my life. Alot of people thing that self-care is about just your mental health buy it’s about your over all health. If you’re noticing this is happening in your life as well, take a step back and examine yourself. Take care of you. Even though sometimes you can’t help the life circumstances you’re in, you just gotta give it an eye roll and put you first. I’m taking my own advice. I’m also no longer being everybody’s ear unless I’m getting some coins for it. I started going back to my therapist and I’ll be starting back with my yoga classes too! Well ladies and gents, that’s what’s been on my mentally for the day! Love you all! Shalom!
~Rizzo Nava Lihi
You ever feel like you want to do more in life or like you’re not living a full life? I think most of us do. Like we have visions, dreams and plan but we get lost on where to start. I know personally my brain stays working and ideas are forever flowing (thank anxiety). I’m just ready for my “big break” so I can really get the ball rolling. Living with a disability truly does a number on you physically, emotionally and mentally. Ive mentioned befor in a previous blog that you go through stages of coping. You have to grieve your past self, learn to accept your current self and then try to find your new self. I have so many things I would like to especially now that I’m in remission and healthy enough to do them. Not just for myself though but mostly for my kids. I want them to know that their mother really worked hard to make something happen just for them. I want them to have something to be able to share with their children and grandchildren. I want to be remembered as more than just their sick mom. It really sucks because when you live with something like Myasthenia Gravis or any chronic illness, that’s all you feel like..ILL. No matter how high your self esteem is, how encouraging you are, how much you smile or how hard you fight. You still feel like you’re just a sick person and it’s not everyday but quite a few days. But anyways, it’s time for us to really let go and take a chance on life, love and ourselves. There’s a meme about autoimmune disease that says something along the lines of only I am to enough to kick my own a**. It’s so true and I love it because only I can take me down just like only I can hold me down. Only I can stop me from progressing and being a better me. Only I can stop my progression and only I can stop me from living my life to it fullest potential. A couple years ago when I first got MG, my husband saw me crying on the couch. I was crying because I felt like I had nothing else. I couldn’t hold my baby, I could do hair, comb my own child’s hair, some days he had to brush my teeth and most days I couldn’t chew or swallow food. He looked at me and said “You’re still my wife, you’re still their mother and you’re still beautiful. Now what is it that you would like to get out of you new life? What do you want to do with it?” I told him I wanted to advocate for my illness, be a spokes person and the face of MG. To Yah be the glory that I’ve had opportunities to do so and I’m thanking him in advance for those to come. I know that life is more than MG, I’m more than MG but the reason I’m alive is because MG didn’t conquer me, I conquered it! So with that being said I will speed awareness, share my story and the stories of my snowflakes sisters. People say you shouldn’t talk about so much and don’t let it consume you. If I don’t advocate then who will? If I don’t advocate will Yah be pleased? I mean cause after all MG is a huge part of my testimony… Think about it! What are you putting off or holding back from? I want to hear from you!
~Rizzo Nava Lihi
#JuneIsMyastheniaGravisAwarenessMonth #TealWeFindACure #TeamRoTeTe
I was looking back at a video that my sister made not long before her passing. Her message was “Keep on fighting cause dreams do come true!” When you look at everyday life and it’s struggles we can get discouraged quickly. It may not look like were making any process or reaching our goals quick enough but we are. Our expectation of progress is usually something to be physically seen by the eyes and materialistic things. Truth be told, everything is a learning lesson, every lesson learned contributes to progress and the progress leads you to your blessings. In my case I always feel like things aren’t happening in a timely manner or things come to a hault. I know for a fact that I’m learning patience and over the years I’ve been humbled. That’s my growth and progress. Once upon a time was an impatient, loud mouthed, fire cracker and I my attitude just sucked. I still have a struggle with waiting sometimes but in those other areas I’ve grown tremendously. So even though I don’t have the big house, new car, best clothes etc. I know that my dreams are going to come to pass. Don’t lose hope in yourself. If you don’t believe in your vision then no one else will. It all starts within yourself. Keep positive mindset as much as possible. When you feel like giving up just take a moment to yourself to regroup. It’s okay to be upset, sad, down or whatever you may be feeling. It’s perfectly normal. You are a human being and you are entitled to a bad day. However, you don’t want that DAY to turn into DAYS. Revisit your plan/strategy to reach your dream. Is there anything you can do to modify your route? Can something be done differently or can timing be adjusted? Do whatever it takes to accomplish your vision but remember not to compromise your integrity and who you are. That’s all for now folks! #food4thesoul
~Rizzo Nava Lihi
RIP Petra Peach
It’s Myasthenia Gravis awareness month and I’m very excited. I love being able to just share share share about MG. Unfortunately, my dear friend and sister Kandi Adams is no longer with us. She was a great contributor to our movement and a great warrior. Kandi not on had MG but she fought breast cancer. After beating it the first time around it came back with a vengeance. Stage 4 metastatic breast cancer is what it’s called. It basically spread and tried to consume her body. Kandi fought so hard for as long as she could. She couldn’t have done it without the love and support of her husband, mother and children. This week they would’ve been celebrating their 23rd anniversary together. Even though her flesh is no longer with us, her spirit is and I know she’s still celebrating with him. I met Kandi through our support group WWMG. I found her on a post where we commented our location on. The first thing that caught my eye was her name because in high school everyone called me Khandi. I hadn’t met anyone one whos real name was Kandi or anyone in East Tx with MG so I was excited. I added her as a friend. We talked on the pst about looking for a new neurologist because Dr. Gominak was retiring. She was also my doctor and the best by far. So my husband actually did the research and helped us choose Dr. Hannigan at The Neurology Associates of East Texas. Kandi had grown to be like a sister to me. We talked, prayed and everything together. My family loved her too and i love hers. My kids used to draw her pictures and make her cards during her hospital stays. I could hold a conversation with my husband and without mentioning her name he already knew I was talking about Kandi. The world is so small that I didn’t even know that my mother n law was her daughter’s teacher for quite some time. One thing I will cherrish is how Kandi and I could sit in the same room and not say a word because we were both having MG days. However, we knew exactly what the other was thinking and feeling. It was always great to be in the presence of someone you were sharing shoes with. Our loved ones try their hardest to really understand and we’re grateful but it wasn’t the same as what we had. It was like how they say twins have a secret language, that’s the level of understanding we had. Kandi loved her family and the entire Chapel Hill community. Her mother was her best friend, her husband was the love of her life and her children were her gifts from God. She was the second mom to every young man on the Chapel Hill HS baseball team. Every game they played was for her and to prove they wrote it in their ball caps. She loved baseball so much and She serious about those nose safety. She was what I call a counter mom. Best believe She was counting pitches and everything else. Kandi hated to miss anything so she prayed for strength to make it to ever game and performance that each child had. Her daughter’s were twirlers and she loved watching them out on that field. She was super excited when they made the team. I also remember hearing one of her daughter’s sing and I was in tears. OMG!!! She literally has the voice of an angel. I can guarantee you that God himself came down from heaven and gave her that voice as a baby. Without them she would have never would’ve made this far. I hope they all know that they’ve helped her WIN in the end. I’m dedicating this month to my dear friend and sister Kandi!
Rest in Heaven Mrs. Kandi Adams
Kandi and her husband Heath!
2- firmly established
I welcome 2018 with open arms! I’ve never really been one for resolutions but I don’t knock the people who are. I just know that I am claiming personal growth in all areas of my life. I have faith that God is going to move in miraculous ways. I was blessed in 2017 with life, health and strength. So this year I know there will amazing blessings. I’ve already been given the things that I need so now it’s time to get the desires of my heart. I’m looking for a new home, more travel, event/job bookings, to grow my children’s savings accounts and to start their first business. I know that many of us are seeking some big changes in our lives. I suggest you write these things down, make it plain and take it God! Remember when you ask God for these blessing that you are being realistic and not greedy. He already knows what’s on your mind and heart. He just wants you to be open with Him and remain faithful to Him. Pastor Randle told me that we should also be specific with our prayers. There’s nothing wrong with just laying exactly what you want out there. God can exceed our expectations so there really is no need to settle. We are royalty, His son’s and daughter’s and as long as we’re being faithful then we deserve the best. I started my prayer journal December 24th 2016. Some days I wrote in there multiple times. I just poured my heart out on paper. It was especially easy for me at the time because I did not have a physical voice. When I tell you that at least 80% of my prayers were answered, they really were. Now don’t get me wrong, it was hard being patient because we know God moves on His own timing. Don’t expect to pray today and have it answered right away. You have to remain faithful, patient and obedien. In return God will bless you. This year we need to be grateful for the small things and we have to remember that we are blessed because there is always someone that will appreciate what we take for granted. As I close out this short blog please remember to hug your loved one, tell them you love them, check on your elders and reach out to the ones you rarely speak too. We’ve had too many losses and tragedies in 2017. I love all my readers. May blessings be upon you!
~Rizzo Nava Lihi
October is PICLA (pregnancy infant child loss awareness) month and November is Premature Awareness month. These are extremely tough journeys to go through and unfortunately some have to endure both. I have faced both myself but recently a couple that I love with everything in me has had to deal with it unexpectedly. My wounds are old and I’ve dealt with my grief with little to no support. That brings me to my topic of discussion. The importance of healthy grief and genuine support. Grieving comes in many forms and stages. There is no correct way to do it but there healthier ways to do it. When grieving most people go through phases of anger, hatred and feeling lost. They want to know why me or even feel like it’s all their fault. They punish themselves for what has happened. Some like myself have turned to drugs and alcohol to feel numb or make us feel like it was just a dream. All of those things can lead to even worse things like addiction, depression and suicide. Going down a dark road is one of the hardest things to bounce back from. If you feel this happening to you then you need to reach out to someone. This is where genuine support comes in. After going through a tragic loss you don’t want to be in the presence of negative people. You need a loved one that with open their ears and listen to you pour your heart out even if they don’t understand your feelings. You need people who really have your best interest at heart and won’t treat you as if it’s not a big deal. This doesn’t go away over night and it takes a long time for a mother to really recover from…and some never do. There is always that sense of guilt like they were at fault or is there something they could’ve done better or differently to change what has happened. I’ve interviewed people from various backgrounds that have suffered such a loss. A lot of them say they find out who really is there for them. One couple has stated that after their son’s second angelversary they were asked to stop talking about him so much and to get over it. A friend of mine has told me that because her baby was only a day old and another child passed at an older age that people made it seem as if her child’s life was less important. I’ve met a few ladies who have been bullied because they posted pictures on social media. Their children were called names, they were told it was their fault, God was punishing them and the list goes on. They all just want their children to be remembered forever. Most of them share so much because this matter should not be so taboo when it really is so common. 1 in every 4 women will experience this. If you are experiencing or know someone who’s experiencing a loss please feel free to reach out to me. There are support groups out there such as Mending Hearts on fb. There are ministries that can be found online. Talk to someone. If you are the person offering support, be mindful of that person’s feelings. Sometimes it may seem like they are saying the same thing or like you’re no help but you really are in Monroe ways than one. A grieving person really just wants to be heard and held without being judged or questioned. Remember to be open and receptive. Put yourself in their shoes and treat them they way you would expect to be treated. Always keep them in mind because even though your life goes on, it feels like theirs is at a stand still. Try to encourage them to get out a little more, include them on outings and check to see if they need anything whether it’s big or small. Give them a card or a basket of their favorite goodies to let them know you’re thinking of them. Soon enough, they’ll be closer to the person they once were before their child loss. Just stand strong on their behalf.
~Rizzo Nava Lihi