When I look back on the most rewarding experiences of my life, they are almost all to do with serving others. Right now I’m working on a community service project called Scrapaganza. Scrapaganza is a scrapbooking event at the Ronald McDonald House in Los Angeles that celebrates the beauty of every life as a source of inspiration.
Ronald McDonald House provides housing for families who have seriously ill and injured children in the hospital. These parents and siblings are dealing with very difficult circumstances. Scrapaganza will be a source of joy during this stressful time in their lives.
The event will be open to all families currently staying at Ronald McDonald House. After an inspiring keynote, each family will create a beautiful scrapbook telling their personal story and celebrating joyous memories. Expert scrapbookers will be on hand to lend support and assistance.
Scrapaganza is currently seeking volunteers and donations. Find out how you can get involved!
Please help me spread the word by posting http://scrapaganza.org to your Facebook, Twitter, and etc! Thanks so much for your support!
This is not an easy thing for me to confess, so please be kind.
I realized that I am afraid of getting better. Not because I am afraid of being well; I want nothing more than to be well. I am afraid of getting better because I am afraid that I won’t. In other words I am afraid of disappointment. I am afraid that I won’t get better in both the long and short terms. I am terrified in fact.
I’ve been having a rough time emotionally with the new diagnosis of Myasthenia Gravis and this prolonged hospitalization (over 4 weeks now). It’s been a grieving process. Lots of different emotions. Lots of tears shed quietly making it hard to breathe the oxygen coming through my nasal cannula.
But I’ve had a breakthrough as well. My friend Monique and I had a wonderful discussion about all this out of which I created a new way to be in this experience of being ill which is to experience it as quite the opposite. I created the possibility of being Creatively Courageously Embracing Health. This means that I don’t have to be afraid of not getting better because I am Creatively Courageously Embracing Health.
Creatively Courageously Embracing Health
As I continue this journey Creatively Courageously Embracing Health, I have undergone 3 treatments of plasmapheresis. The improvements have been huge! I can move my legs again without the help of medication (though the medication further improves my strength levels)! I can also breath a lot better and my voice is stronger as a result. My doctors are deciding if I’m going to have 2 more treatments or if we are just going to stick with the 3.
Then begins the long process of rehabilitation. Being weak and/or paralyzed for so long has really set me back, since I am Creatively Courageously Embracing Health I know I will find a way to get where I am meant to be. I will courageously push to but not past my limits to recover and then I will creatively adapt the rest of the way so I will be where I want to be in embracing my health.
I just hope you will all embrace this possibility with me!
When you are living with multiple chronic illnesses things can quickly spiral out of control. Cruising along getting through the day to day and then suddenly you are veering off the road and into the dark unknown.
What started as a tiny pimple turned into a nightmare. I got a cellulitis infection on my neck which triggered a chain of events leading to a devastating new diagnosis. How did I get here alone in the dark and how do I get back on the road?
When the tiny “pimple” grew to half my neck in size in 72 hours time, my doctor told me he’d meet me in the ER. When you are immunocompromized (as I am), you don’t take risks with infections. I decided to have my caregiver Nathalie drive me an hour to the big city hospital where all my specialists are on the off chance they decided to admit me. This turned out to be a wise move on my part as I they almost immediately decided to admit me for IV antibiotics.
But even as the infection started to clear over the next few days of IV vancomyocin, things started to go downhill. A familiar yet mysterious pattern emerged reminiscent of my hospitalization in May.
I developed both blurry and double vision. Then I started having severe weakness borderline on paralysis in my left leg. Then my right leg. That is where things had stopped in the past and in May, but this time the paralysis continued to ascend. I could no longer control my bladder and had to be catheterized. Then I began having trouble moving my arms. Finally my breathing muscles were effected.
My doctors quickly moved me to the ICU. Effectively paralyzed, I was intubated and put on a ventilator. I received a high dose pulse of steroids to help calm down my immune system which was attacking my nerves, preventing me from breathing on my own.
After a week of having a machine breathe for me. I was able to breathe on my own again and was moved out of the ICU to a monitored floor. But the mystery remained. What had caused all this?
Well the answer came in the form of another infection – a kidney infection. With the new infection the blurry/double vision and paralysis got worse again rather rapidly. Turns out the antibiotic being used to treat the infection can make symptoms worse for people with a certain disease which matched many of the symptoms I have.
So my neurologist decided to test it by giving me a medication called Mestinon which specifically helps weakness in people with this disease. Sure enough within a very short time of taking the medication I could move my legs again! And when the medication wears off I go back to near paralysis.
And so last night my doctor officially diagnosed me with Myasthenia Gravis. And here I am veared off the side of the road with this scary new diagnosis. And unfortuantely this new diagnosis doesn’t replace any of my other diagnosises. I still have Sjogren’s Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroidis, Fibromyalgia, and so on and so forth. And I still have an undiagnosed neurological component – the autoimmune brain stem inflammation.
Myasthenia gravis (mi-uhs-THEE-ne-uh GRA-vis) is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. The cause of myasthenia gravis is a breakdown in the normal communication between nerves and muscles.
There is no cure for myasthenia gravis, but treatment can help relieve signs and symptoms — such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.
What I had was what’s called a Myasthenic Crisis where my breathing muscles became too weak to do their job. Scary! That is why I ended up on a ventilator in the ICU for a week. Now it was all starting to make a frightening sort of sense.
I just got moved to a non-monitored floor, so I’m overall doing much better physically. Though I have several tests scheduled for next week to determine where the disease process is at and if I still need a special kind of blood filtering called plasmapheresis to help me recover the rest of the way. I also have to have a scan checked to see if I might need surgery as well. That’s in the short term. In the long term I still need to get off all the prednsione I’m on that has somewhat been keeping this disease at bay. That means some harder core immunosuppressant medications or possibly chemo agents to suppress my immune system so it will stop attacking me.
But where does this all leave me emotionally? Well its like I’ve veered off the road. This diagnosis wasn’t on the route I was expecting to travel. And I suddenly feel alone in the dark in a strange place and I don’t quite know where I am. On one hand I am happy to finally have some answers. On the other hand this is not a good diagnosis to have. The idea of ending up back on a ventilator in the ICU every time this gets flared up terrifies me.
It’s tempting to just act the the scared little girl I feel like and curl up in the corner and have a good long cry. But that won’t really get me anywhere but feeling more miserable and in just a bad situation. So how do I get back on the road?
I think I will have that cry. I need to vent some of the shear grief I’m experiencing at the news of this diagnosis. I’m really really scared and I shouldn’t feel like I have to hide that or put on a happy face to please everyone. I need some time to feel the weight of my diagnosis and experience the bad feelings associated with it without denying them or stuffing them down. This doesn’t mean I will wallow in them either though. But there is a time and place for a healthy dose of sadness. In fact, I believe it’s perfectly possible to be deeply sad about something and still consider yourself a happy person.
So I’ve veered off the road and had my cry in the dark. How do I get back? Now more than ever I must turn to God and Christ to guide me back. To provide me the strength and comfort I need. With them I will never be alone in this. I turn to them in prayer and in the study of scripture. When people tell me how strong I am in all this, I really feel all that strength isn’t me at all, but my faith in Christ. With the Holy Ghost as my constant companion I can’t feel too afraid. And I can’t feel alone. The knowledge of Christ’s eternal love for me and knowledge of the pain I’m going through guides me back to the path so that I am no longer veered off the road in the dark.
Finally I have to have trust in myself that I can get through this. I have found ways to adapt to every obstacle in my path thus far, and I will find ways to adjust to this too in time. Yes right now I feel crushed, but I will not let this crush me. I feel devastated, but this will not devastate my spirit. But in the meantime, to be perfectly honest, there will be a lot of tears shed. And I’m okay with that. It’s all part of the process of getting back on the road again.
Even as I listen to the alarms of my own monitors, angry that things still aren’t quite as they should be, today I just feel so grateful to be alive. Life is so precious and short and wonderful. I feel so lucky to be breathing on my own again. It’s the little things you so easily take for granted.
Overall I’m feeling much much better. I am breathing all by myself after a week of needing a ventilator to breathe for me due to my autoimmune disease paralyzing my breathing muscles. I’m now out of the ICU. YAY! My double vision is also much better and I am moving all four limbs again!
I am having some high heart rate issues today (with some chest pain and shortness of breath), and I’m possibly brewing another infection somewhere. So I get to look forward to more tests tomorrow. Fun times!
I am still hopeful though that I’ll get out of here to some degree of soon(ish).
Thank you everyone everyone everyone who has been there for me! This has been a very very scary experience for me and my family, so whether you’ve come to see me or written me a note, signed a card or just kept me in your thoughts and prayers, it all has been so very much appreciated by all of us!!! I love you all and miss you so much!!
I have multiple autoimmune diseases that have made me really sick over the years. But got a bad skin infection (cellulitis) last week and ended up in the hospital last Friday mostly because I have so many complications including being on a lot of immunosuppressants. The infection is mostly better now thanks to strong IV antibiotics, but the whole ordeal has triggered my autoimmune brainstem inflammation which is giving me severe double vision and problems moving my left leg. I am now getting really high doses of IV steroids to try and stop this. We’ll see how it goes…. Healing thoughts and prayers are most most welcome!!!! I love you all! ♥
Please post any questions you have in the comments!
My name is Lauren, and I’m a 26 year old with an unusual collection of autoimmune diseases that includes arthritis, Autoimmune Pancreatitis, Autoimmune Hepatitis, Fibromyalgia, and Sjogren’s Syndrome with neurological involvement. I write about my struggles dealing with sometimes dangerous new treatments, balancing relationships with family and friends, my difficulty adapting to life in a wheelchair due to debilitating arthritis, and most importantly my quest to maintain hope and faith in myself through it all. I am also an avid scrapbooker, alternative reality gamer, and an aspiring novelist writing my first book – a coming of age story set in a dystopian future.