myastheniagravis

Bucket List Heros

Posted on by Lady CAS

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So recently others have been seeing my bucket list and apparently they have made comments about it and found it just as interesting. My younger brother made the comment that I was too young to have a bucket list. He was not aware of the more trendy phenomenon of people creating them just to be sure that they live life to the fullest so that they have no regrets. It’t no just for those of us who are sick and have chronic illnesses. I know when I first told him it alarmed him though because I do have a chronic illness and he probably thought the worst. But I explained that people with MG live LONG healthy lives and that I created my list to ensure that I do not allow myself to sit and wallow in my disorder. Bucket list are meant to inspire you to do these things not just before you DIE but just to get out and do something more than get up, go to work, come home, repeat!

SO with that said I have a master bucket list that will not change but will slowly grow over time as I see fit an accomplish things and I have an annual list that I will create around the 3rd quarter of each year and have from that time to the end of the following year to complete. It will give me great joy to complete the list because I enjoy creating to do list and crossing items off of them as I tackle them. I also enjoy planning and organizing events.

Anyways, I have been enjoying finding new ways to tackle the list and when I can get them done. Some of them have been harder than others due to time management. I have found that I am not the only one who wants to see me accomplish these goals and that feels great too. I always tell people I do not want anything for Christmas or my birthday. It’s not because I do not feel worthy or I feel people cannot afford it, it is because I honestly feel blessed enough and would rather give than receive. I also feel that my family has given me so much already that I could want/need for anything. However, my dad saw my bucket list and he decided to scratch one of the items off of it for me and I even more grateful.

My dad bought me my go pro. I can take it with me on my adventures now. I am ecstatic. My mom said he was really looking for it. I’m proud of him because he really went above and beyond. Usually he defects to my moms for what all of us want for different events and this time he knew. Handy detecting dad, lol. I shall call it my PRECIOUS. Can’t wait til our trip overseas!

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Annual Bucket List: 2016

Do a local bike race
get yoga mat/basic training
Visit wizarding world of Harry Potter
Read 50 books — at 22 books almost halfway
Buy a Go Pro
Go Sky Diving
Go to a State I have not been to before
Go to 5th Cirque Du Soliel Performance
Paint Pottery
Throw Pottery (as in make my on pottery)
Decorate my house for fall
Decorate my house for Christmas
Take a romantic trip with my husband
Volunteer with a charity monthly
Take a culinary class
Go swimming (you would be amazed that since being diagnosed with MG I have not swam once because I have started to have fear that it would become over exterted and not be able to get out of the water….says the former lifeguard and scuba certified person)
Be sling shot (it a weird bungee course thing that looks like a giant sling shot)
Go to Canada

Master Bucket List

Write a book
Have a baby/ adopt a child
Create a Charity
Run a business
Travel overseas like a nomad (England, France, Italy, etc)
Go to Disneyland
Go to a bioluminscent bay
Have my music music produced and perform it
Help Find a Cure for MG
Go to Alaska- see the Northern Lights
Pose for a sexy calendar

 

#MyastheniaGravis and #Empire

Posted on by Lady CAS

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Well It’s here, the Fox’s new season of Empire. For those of you who don’t know what it is, it’s a new television show that is about a urban family that made ‘OWNS’ the music business in a sense but how they got there is very dubious much like many empire are built. One of the lead characters Lucious Lyon happens to be one of the shadiest characters. At the end of season one they find that they misdiagnosed the man and find that he is not going to die from one disorder and that he in fact has a rare disorder called Myasthenia Gravis. Many of you have not heard of this. I happen to have this disorder. I was extremely excited that they made a show that has such popularity here in this country aware of the condition.

However, since establishing that this is the condition that he has I was hoping that there would be more about it. I know that there has only been one episode into the new season. But I hope that they show an actual treatment. He has money so I hope maybe they show him going to Europe and getting treatment with the Amicus-Fenwal plasma exchange machines as we only have one here in the U.S. because they are so expensive and still trying to get FDA approval for other treatments. He is rich and could show that he could do anything and so forth…(Just hypothetical instances) Or even showing a regular treatment with the regular COBE machines and COM.TEC. People need to see the realism behind this disorder. Moreover, if they hear it more than once they will continue to put it in their search engines and give to charities and foundations and understand the gravity of the illness and what it is. Many people have never heard of the disorder. Until I was diagnosed I had not either. People are easily misdiagnosed with other conditions, I was one of the ‘lucky’ one who had nearly every symptom right away and was diagnosed within 5 weeks. But in hindsight may have shown signs off and on for nearly 2 years in very subtle ways where I was treated for something with physical therapy or or self-therapy (because I am a wellness professional) and put/ went on my way.

I will say though I love the show and it still has me hooked and my husband who jumped on just at the season finale last season, I hope for just that extra bit of insight. I feel that they they started this season 3 months further into along and surely they have given him medications and so forth and we as the audience should know what those are? I would like to know his status…I am sure people who had never heard about this show are now tuning in to find out if they are going to do the disorder any justice! We can only hope!

Thankful

Posted on by Lady CAS

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Last night I may not have gotten much sleep and I may be extremely tired this week and super run down due to all my appointments but I had a moment last night. I woke up and had to go to the bathroom in the night and came back and was in pain. I felt my left flank hurting and instantly thought OH NO! Please God not another kidney stone. I was like I know that the last 2 days I have been 2 busy. I have not been drinking water like I should be and I was so god since my last stone. I have been ON IT! I mean really on it! So I got up and instantly drank as much as I could which was only about 8-12 ounces before I felt sick to my stomach at 11:53p. I was praying to God to please not let me vomit. As an MGer If I start vomiting that repetitive muscle action can cause choking and that can go really bad really quickly. I was like I do not want to go to the hospital. I was like I have options. I have zofran in the other room if I need but I am going to sit here and breathe and get my anxiety UNDER CONTROL. I am going to BREATHE. I did not even let my mind go the the emergency suction machine in the house. I do not know why. I guess subconsciously I refuse to think I will need this at this point. I thought about pain management too but I said NO. BREATHE! Then suddenly about 15-20 minutes later it stopped. I started to tear up. I started thanking God instantly. I knew I had done what was right. I promised myself I would sip water every time I was up last night, through out the day today ask I could take it and as soon as I was off today I would go and buy my favorite sports drinks/ waters to help me re-hydrate. I have to wait until I get off to do this since I had to be up at 4a to be at work by 5:10a but when I get off at 1:30p it’s on. If the pain had not subsided instantly I would have known that I was too late and that it was a kidney stone again. I have been there and done that 3 times this year. They have no idea what was causing them, they just know it was not my medications thankfully as my medications are very critical to stabilizing my disorder. Funny enough Goldilocks slept through all of this last night and had no idea that I was going through any of this…if only I could sleep like this. This would probably eliminate half the issues I have had in my life, LMBO.

Day 8 of the #loveme Challenge…Share a scar

Posted on by Lady CAS

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So today I am suppose to share a scar. I am sure this can be physical or emotional. I am going to go with a physical one that makes laugh every time I think about how I got it. Oh that sneaky moment when you realized how bad you much you are maturing but your parents do not, LOL. I have a scar on my left shin that is about 3 inches long it used to be pretty dark but has lightened considerably since I was 12 (almost 2 decades ago).

I lived in a full house. We had 3 bathrooms. My parents had a bathroom in their room they shared. My sister and I shared a bathroom, and my brothers shared a bathroom. My biological mother says she nicknamed me mink for many reasons but I believe it was because I was always so hairy. I have always had long hair on my head but having long thick hair on your head from birth usually doesn’t stop there for most girls, LOL. You guessed it I had hairy legs and arms too. I was not too self-conscious about this until middle school when all my friends were shaving theirs off and asking why I wasn’t. I looked like an ape near them. They were necessarily picking on me (though there were girls I did not associate with who did) but they would ask. So one day after showering I saw my sister’s dull razors sitting by the shower. I had no idea that a razor could be dull or that you you needed to hold them at certain angles. I also did not think that if you had knots in your shins from chronic hairline fractures (severe shin splints from running) this was probably not the best idea. BUT I WAS DETERMINED!

I took a practiced stroke with no shaving cream! and same some hair and was excited…I did it again…and again. Then I got to the shin…and it felt weird at first I thought hm and did it a bit harder and faster, and when it felt a bit weirder I looked down. I was in shock. It was white. I don’t mean ashy white I mean BONE white. Then it began to burn…then the bleeding began. I nearly screamed. I closed the cabinet LOUDLY, washed the razor and gently placed it back in the shower, put it back quickly. and then pretended I did nothing there. Then rushed to my mother. It looked like I was dying. I was panicked telling her that I was at the sink and my usual clumsiness of hitting the cabinet had finally resulted in scraping the the sin out my shin. She believed it somehow without further explanation. I was seriously that clumsy which was sad but it was the most painful burning I had ever had in my life. I mean it was down to white tissue, maybe one I just remember it being bright white, then gushing red!

My mom kept a larger than life first aid kit on hand not because she had kids but because she had ME. People said that it was normal for moms to have that many band-aids when they came over but she explained that this bag was just for me and that I went through them rather quickly. Being clumsy is how I learned to laugh at myself early in life! My siblings just kind of got use to it! Most of the time I would not even tell my parents I got hurt they would just know and bandage me anyway to make sure things did not get infected even though I wanted to keep playing, LOL.

Goldilocks Loses His Glasses

Posted on by Lady CAS

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Have you ever known someone who seems to misplace something the very moment they take it off or put it down? This may be my husband. Let me start by saying I love this man. He is a hard working ma who keeps to himself and stays in his own mind most of the time. He is glued to his phone playing games or watching videos most days, lol. I could swear the man may have nomophobia, lol. (That’s the new phobia of not being able to go without your mobile phone). The sad part is when people are constantly multi-tasking it is proven that their memory suffers. In people who already have memory issues or do not optimize their memory this is worse. I feel this is a problem for most men, LOL. Anyways, the moment he gets home, if he puts his phone, wallet, keys, or glasses down he forgets where one or all four are. I keep saying you should keep them all in the same place each night when you come home. Like keys should always go on the ‘key table’ and your wallet may need to go there too. But only my keys manage to get there 90% of the time!

However, no matter how many times I say this the man is like a nomad, he travels around the house like he is lost all night with all these things. I actually play games with him sometimes when he loses them because I clearly can see where they are and he cannot so while he is looking for them I start saying cold cold warm, warmer, hot hot, hotter aww cold! Until he finds them! images (1)Obviously though this can be frustrating though when it happens in the morning before he has to go to work. He is usually running around upset because he cannot find these items and I want to pull a NAGGING wife moment and say, “see if you had only listened to my advice” which is a moot point at that moment. But we are both frustrated, me because I am being cursed out of my sleep hours early and will not fall back to sleep and him because he cannot go to work without these items. So I get up an help him and usually find the item instantly.

The funny part is that like last night the man really travels and I instantly went right to where his glasses were because I, unlike him remembered exactly where Goldilocks went in order last night. He was in the living room with his glasses on watching a show with me. Then he walked into our master bedroom and watched a movie on his phone.  Then he came back in the living (sans glasses) and fell asleep in the chair in the living room. Then because Goldilocks has the habit of never being comfortable and being confused when he goes to the bathroom in the night he went into the guest bedroom and went to sleep. So when
he came in this morning cursing about his glasses it was only natural that when I got up and went straight to them there they would be exactly where he left them in the middle of the king size bed, LOL. I swear it’s like playing where is waldo in the morning…2_wheres_waldo_nowI have to check every bed, chair, sofa, and sometimes
floor palate to see where he fell asleep. He has blankets everywhere! I would not be surprised if I find him in the tub one day. Oh my Goldilocks! And we wonder why I have sleep issues?

I cannot be the only Woman/ Wife who deals with this!?!

Day #7 of the #loveme Challenge…One thing Just for me

Posted on by Lady CAS

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One thing that is just for me- I’m not sure what this means so I feel it is definitely open to my own interpretation. I feel that one thing that is just for me is my meditation time. I would like to say it’s morning but my husband tends to fuddle that at times, lol. But my meditation time is my positive self talk time that I think about my day, prioritize how thinks are going to go and then I pray and give myself that positive pick me up for my day! I do not share that time with anyone else and I do not allow anyone else in that moment. I pray with my husband at meal times and if he wants to pray but that time is my time with the Lord. You can have family time with the Lord, but you still still individual time too. I share EVERYTHING else with this man, LOL. Whew that was hard to find something I didn’t share with him…I may be too giving, lol.

Inspirational Quote…Did you think of superheros too

Posted on by Lady CAS

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This sort of made me think of superheros when I saw it. But it is quite applicable to many of us who have endured some pretty tough moments in our lives. Just think of the movie Slum Dog Millionaire. Had he not gone through all that he had, he would not  know all the answers to the game show questions. Sometimes our experiences allow us to excel later in life (sometimes much later in life) in things we had no idea we would be able to apply our knowledge, skills, or relationships. WE find that due to deaths, homelessness, natural disaster, and the like we have to be creative. We are put in new environments. We forge new friendships and relationships that we may not have otherwise. We learn new skills that we may not have had we stayed in our middle class or upper class life styles. Or a person who always struggled may catch a big break and due to all the skills and street smarts and ingenuity they gain advancement in a lucrative business maybe even owning it.

These are indeed extraordinary Destinies!

Guinea Pigs Needed… ANY TAKERS? MG and Iron Injectafer Treatments Gone Wrong

Posted on by Lady CAS

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I learned a hard lesson last week. So my hemotologist did a routine check after I stabilized and I no longer have anemia. However, they decided that as a preventative measure they would give me an iron injectafer which is really a fancy way of saying IV iron. It’s a 2 step process. You come in 2 times a week apart for 1 does of iron each time via IV and the actual dose of iron given takes only 15 minutes. It should last you at least 3 months if not a lifetime if you are not losing blood anyway in large amounts which they do not think I am anymore. I have had it before when they first were stabilizing me when I was still anemic so I knew what to expect…or so I thought.

Well I did my first of the 2 Injectafers last week and then went to get my unexpected plasmapheresis treatment the next day due to me not feeling well last week because I had sinus issues and overdoing things. The treatment pulled most of the iron right out of my body because it had not really had much time to absorb. No one knew this would happen apparently. I told the nurses at the hemotology office and where I get my plasma exchange and no one gave any warnings (which they usually do if they think there is a problem). So that was kind of a waste. The waste bag of my plasma was full of the iron I just received the day before. That was some expensive ‘waste’! So for this week I learned to reschedule it for after my plasma treatments are complete and now both parties know that for a person with MG and iron treatments this will happen. I was their guinea pig.

OH WELL!