Wednesday, January 27, 2010

What a week, and it's only 1/2 over...

See, I told you once life started happening I would not be able to fullfill daily blogging. I won't be hard on myself though because being too busy to blog about my illness is a good thing. I have been enjoying the energy that the IVIG has afforded me. There is a new pattern to my day that I have come to recognize and enjoy. Instead of waking up exhausted, unable to do much of anything and trudging through the day pushing myself to do the most mundane of tasks, I am having real stretches of feeling, healthy! This is so refreshing, I was skeptical that it would ever happen again and here I am one week later like a new person. Mornings are still a bit of a bear but give me a coffee and a Mestinon and I can take on the world...for a few hours:)

I have been working a few hours a day to get back into the swing of things. Today was my busiest day of all with work in the morning, John's spelling bee this afternoon, and more work upon returning home. I am so proud of my son, he made it through three rounds and spoke confidently each time up at the mike. We congratulated him by bringing him home with us at 2pm...nothing can make a fourth grader happier than leaving school an hour early and he got to hang out with mom and dad for two hours without his little sister, can't beat that. Tomorrow we will celebrate his 10th birthday. Looking back 10 years I can't believe how quickly time went by but beyond that, how much we have been through and how blessed we truly are.

Prayers are needed for my Father In Law. He will be undergoing major surgery next week unexpectedly. He has done so much for us during my illness. Nothing would make me happier than to be healthy enough to pay him back.

That is the blessing in having been through hard times. You get to see how important the people in your life are. This week I had an opportunity to help out two other sufferers of Myasthenia. They too need prayer. One is a girl whom I do not know other than as a member of an online support group. She too was diagnosed in October but she had not suffered any extreme symptoms that require hospitalization. She posted a concern about breathing difficulties and slurred speech and I urged her to seek prompt medical attention. After I posted I thought, maybe I am over reacting, I was worried I was pulling too much from my own experience and I hadn't seen any follow up postings by her. Last night I learned that she followed my advice and when she got to the hospital was admitted and treated on the verge of a crisis - also known as respiratory failure. She thanked me and I felt so relieved that I was able to help someone.

That is what I have to hold on to. This is what gets me through all of the tests, needles, meds, side effects, symptoms, and on, and on. If my suffering can help one person then it is worth it. The other person I was able to help is going through a very rough time. We met on our search for more information about MG and found out that we have similar disease patterns. She too was hospitalized this week but sadly is not receiving the care she needs and deserves. She is one of too many people (self included) with MG who has had their diagnosis challenged by an arrogant neuro. She was told it was all in her head, even though the blood tests and all of the clinical tests confirm her disease. I was not able to help her receive better medical care but I was able to reassure her that she wasn't crazy and that she was worthy of being treated with compassion and dignity.

I am appaulled at the number of neurologists who I repeatedly hear are treating patients as whiny psychopaths. They have called patients names, accused them of pretending to be sick, and refused much needed treatment. All of these things happened to me on my journey. It makes me feel that much more blessed to have found a stellar medical team to treat me. It was a rough road getting there but we made it through and I am reaping the rewards. I pray this week for those who have yet to find a doctor to give them the proper treatment and respect they deserve and for those doctors who are ill equipped or simply aren't interested in treating MG to just tell the patient that it isn't their specialty and recommened a collegue.

That is all for now, I have much more to say but it will have to wait...American Idol calls..woo hoo!


  1. OOOh, girl, you hit a nerve with me too! I had SO many people tell me I was nuts. Stress. Anxiety. Mentally ill. I almost started to believe it! Doctors like that should be put out to pasture. I tried going after the licenses of 2 neuro's from the U of M (who are no longer there, thank God), but I didn't have "proof" that their incompetence cost me health-wise. One stood by my bed and said, "If you could just accept that this is all in your head, youwould get better!". They sent me home to die. And the laywer said I didn't have a case. I did not want a dime from them. I seriously wanted them to NEVER be able to do to another patient what they did to me. It makes me SO ANGRY when doctors are TOO LAZY to figure something out so they just tell you you're nuts. UG. I think I better stop before I have my own post here!!

    Thank you for being willing to help others in your suffering. I have said the same thing, that if I can help one person, my suffering is worth it. I think that's because we know, love and appreciate the suffereing that Christ did for us...

    Have a great weekend! Off to Ann Arbor tomorrow for plasmapheresis.

  2. You are 100% right Kerri. They are too lazy or too proud a.k.a. embarrassed that they can't figure it out. God forbid a neurologist may not be well versed in everything under the sun. Well, we will just have to keep comforting people going through similar circumstances and hold onto how thankful we are to have a good specialist on our side.

    This Christmas season was the sickest I have been through the whole disease process. I had many bad experiences and was feeling pretty sorry for myself the second week of December. Then I decided I was letting those jerks win, so I grabbed my box of Christmas cards and wrote to all the doctors that HELPED along my journey. It helped me feel better and I am sure they hear more complaining than compliments so hopefully it made for a nice Christmas for them too.

    I hope your Plasmapherisis went well and you have a wonderfully sunny vacation!

  3. Indeed...can't miss American Idol.