Dealing with a chronic illness or any other type of an extremely stressful situation does leave behind emotional scars. Some of this scars just do go into hibernation. They continually cause mental suffering on a daily basis. This is true for me. Lately, my emotional scars have decided to play a riveting game of "let's screw with her feeling daily." On a daily basis I experience at least one anxiety/panic attach. And for any of those people out there reading this has had them then they know this just is not a fun game at all. It's fucking horrible. I have to laugh a bit about it though because the whole time I was going through a tornado of doctors, medications, tests, and awful flare-ups I handled it very well emotionally. Now that the waves have stopped crashing and soothed down, that is when my mind decides to go into panic mode. I always thought I have a knack for doing things ass backwards but this one takes the cake.
So many, many people everywhere deal with emotional issues such as depression, maniac behavior, bi-polar, anxiety, and so on. It is an every day battle dealing with those thoughts that just screw up our way of thinking and acting. You even tell yourself to snap out of it but that never works. A lot of people see mental disorders as not a real type of illness because it's all in our heads. Well, guess what? My Devic's Syndrome can't be seen on the outside so is that all in my head too? Mental disorders are far too real and far too dangerous to be left untreated. Now I am not saying medication for mental disorders is a cure all and should be given away like Tic-Tacs. It takes a combination of maybe some medicine, therapy, and daily exercises to re-train your way of thinking. I always said it takes a lot more work to change a frame of mind than the frame of your body. So many of us suffer silently out of shame. But being in complete solitude with our mental illness just makes it worse. We need to start supporting people more with mental disorders. We need to try to understand them better. It's easier to do this if you have gone or are going through it yourself but it is very hard for someone who never had a mental disorder to try to grasp the reality of it. If you know anyone in your own life who shows some signs of something like this please be there for them and try to help them find the help they need. Just one act of kindness could change someone's whole world. You may not be the person who changes the world but you will always be the person who changed that one person's whole world. And that is something glorious!
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I have been away for quite some time and I can't really explain why. I had yet another flare up and was on steroids. For some reason the steroids really messed with my mind set this time. They always warn it can do that but all those time I was on it for previous flares, I never really experienced it until now. It made feel like I was a different person. My emotions were a bit off and I just didn't feel myself. I couldn't focus or keep a train of thought. I couldn't organize daily tasks and believe me I am usually always excellent at my organizational skills. I was constantly distracted and didn't want to deal with my responsibilities. It made me stray off my path, the path I feel was laid out for me. Hopefully, I am returning to my path.
Yes, I am still working on the book. Genius takes time. HaHa! I didn't write for a while. For some reason I had no desire to pick up a pen and put it to paper. Maybe it was because I felt sick and tired of dealing with my illness. I felt like I wasn't Lisa anymore, I was my illness. The book just was a reminder of that. But I am back at it. At my most recent visit to the neurologist, after MRI and bloodwork, another diagnosis was either added or changed. I am atypical MS. Meaning not a normal MS patient with the normal MS. When did anything with MS become normal? I was diagnosed with Neuromelyitis Optica: As known as NMO or Devic's Syndrome/Disease. I rather say syndrome. I hate using the work disease. Make me feel contagious and dirty. I no longer take daily injections, Thank God. But now I am on a med, pilkl form, that is used for organ receiptants so they don't reject the new organ. There is some serious side effects such as lymphoma that scares me. IT lowers your white blood cells and mine are high. You would normally think that was a good thing to fight off infection. Unfortunately, in my case it is attacking my own healthy bodily parts. So the new med makes sense to me so I am hopeful it will work. I just need to stay away from sick people since it will lower my resistance. That's ok, I don't want to be around them anyway. HaHa!. I hope you forgive me for my absence and are still looking forward to the release of my book. I would love to hear any feedback or comments of anything you guys are going through that is difficult or sometimes seems unbearable. We all have a cross to bear, I just wish mine wasn't so heavy. It's been a little over two weeks since my father passed away. It's hard to believe that time passes so quickly. I am back in my routine with the kids and normal life. Most of the time I just go through the motions but my mind is somewhere else. I guess I keep myself busy to avoid the loss of my dad. But there are always those moments where it all catches up to me. The image of seeing his face when he died seems to haunt me. Then there are those happy memories that flash back to me and it either makes me smile or cry. There is something missing and I think there always will be.
As for my MS, that last flare up took a toll on my left hand and torso. The tingling tightness is still there. I am hopeful I will regain the full use of my left arm but sometimes I have my doubts. It's still hard to type, write, and just plain everything which I try to do with my left hand. I get aggravated and upset with it sometimes. The only way I can describe it is that it feels like pins and needles, like when you sit on your leg awhile and it falls asleep. Then there's that constant feeling of tightness like when you stretch a rubberband to its maximum width. The medicine for it does help a bit but it makes me feel high. I hate that feeling. I don't like the feeling of not being in reality. I try to go without it but then it gets so bad that I give in. It scares the shit out of me. It scares me to think that I will keep having numerous flare ups and the effects will be permanent. I go to my MS specialist soon and I believe I will start the infusions. I hope this med will work for me. I started taking natural supplements too. I researched them a lot to see which ones might have the best benefit. I know my doctor only recommend the Vitamin D supplements but I have to try something, anything that might help. I listen and follow all the doctor's instructions but it just isn't helping at this point. I will continue to listen to him but I need to try everything I can to stop this disease from taking away or limiting my bodily functions. Honestly, I am so tired. I am so tired of fighting this disease. I am so tired of the steroid blasts and meds. I am tired of my body being broken. I don't know how I keep pushing on each day but I do. I just make myself. Actually that's a lie. I push on for my boys. I don't where I would be without them. I just keeping praying and hoping that this MS doesn't wreak more havoc on my body. Just keep hoping and praying. There still is the glimmer of hope even when I just want to give up. I still feel that speck of hope and see it shining through the dark. I rely on that, I need that. Sometimes it seems so close that I can grab it and everything will be ok. Other times it seems so far that I have to squint to just get a glimpse of it. But it's there. I wonder who keeps it there for me? God? Myself? Either way I am grateful for it. I guess never underdestimate the sheer power of the human spirit and will. It can be mind-blowingly awesome that evven we, ourselves, can't grapse it! I apologize sincerely for being M.I.A. for such a long period of time. I had yet another flare up before Christmas which has left some decreased mobility in my left hand. Since I am left handed it has become increasingly difficult to write or type. I finished my blast of I.V . steroids and on oral tapers now. Still the awkard tight feeling is there. The only way I can describe it is that my fingers feel like rubber bands stretched to their max tension. My neurologist is aware and when I go back to him he is probably going to change my meds to the Tysarbi infusion. This scares me quite a bit considering I did test positive for that JC virus, which is a common thing, but increases the risk for a brain infection. But having six flare ups in one year is not good also so they will monitor me closely.
Also, on a differentn note, my father's health has decreased rapidly. He is on hospice care at home. My mother took a leave from work to care for him. My sister and I are there almost constantly to help with his care. It kills me to see this once vibrant and strong man to be so weak and bed ridden. I know he doesn't want to live like this but he is clinging on because he worries about us. That's just how he his. We tell him constantly we will be ok. But he is such a loving and devoted family man that I think he still worries. I know everyone has their cross to bear but mine has become so heavy I feel crushed under its weight and barely able to get up. I am so tired of falling down and getting bak up. I am fearful the damage in my hand will be permanent. I am fearful of losing my father. I just pray for strength and relief. So I haven't written in weeks. About two weeks to be exact, since Hurricane
Sandy wripped through my area and left us without power for over a week. During this week I stayed at a relatives during which I had yet another flare up with my MS. I was put back on the steroid IV. It seems like with each flare up a little more life is just sucked out of me, stolen from me. I love writing. But everytime I try to sit down to continue with my book I just stare at that blank page and feel nothing. My motivation seems to be in hiding. I don't want to just write anything so words can fill the pages. I want to be of meaning and purpose. Does anyone other writer get into this funk? I do find writing therapeutic so I should try a bit harder. I guess the pessismistic side of me likes to rear its ugly head sometimes. It tells me, "Why are you even doing this?" "What's the point?" "It isn't going to amount to anything." "You won't finish this just like you don't finish anything else." Maybe I should really consider shoving a sock into the mouth of that pessimistic jerk! HA. I guess I really need to take my own advice and realize this book is not going to be something that will dash me into the world of famous writers. (What I always wanted to be.) Maybe I just need to realize it is about getting my voice heard and conveing a message. When your passion is gone you just feel so empty. It's that little glimmer of hope, a small vision of a dream, that keeps you running. I need to find my passion again. Feeling like an empty shell just isn't going to help me with any part of my life. |
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