Heard from an Old Friend

I heard from a dear friend whom I actually 'met' on an online MS (Multiple Sclerosis) forum. She has been struggling for years with symptoms of MS with lots of clinical evidence, that is, objective evidence her doctors can observe, but without abnormal test results to meet the set of criteria needed for diagnosis. We are in the same boat in this way. The boat is uncomfortable, has no captain, and is going nowhere in particular. We're drifting at sea.... and not coordinated enough to stand up, tie on a life jacket and jump out!

Well, this dear friend just told me that she had a recent MRI and her internist called to say there was evidence of demyelination!! Yea!! Go girl!! So happy for you!! Whew!

Wait a minute....that just doesn't sound right. Her doctor found something awfully wrong with her brain. Evidence of a degenerative disease with no cure. I should not be happy. And I'm not. I'm not happy that she struggles with being in a body that does not work as it once does. I'm not happy that she struggles with fatigue and weakness. I'm not happy that she is an energetic woman trapped sometimes in a body that has betrayed her.

I AM, however, happy that there is a test result for her now which says to her internist, "See? THIS is the reason for all the symptoms I've been reporting to you." I AM happy that her doc has referred her to a neurologist, an MS specialist, so that she will HOPEFULLY get a diagnosis, once and for all. I AM happy that IF this specialist gives her a diagnosis, she can finally, finally get treatment.

So, Yea!! Good luck, and God bless you, my friend!! Prayers up!

Weak in the Knees!

I'm excited to say my 20 year old son, Beau is home from college for a short visit, as he has a break from school. We had a lovely dinner together last night, all 7 of us at the dinner table! It was fabulous! My husband was a goofball, as always, keeping us laughing, and Riley sat next to Beau, savoring our time with him and doing his best to impress and entertain him. We lingered over dinner, but I can't be certain it wasn't because no one wanted to tidy up the table....

I got to bed at a fairly decent time last night, but awoke this morning in such a panic. Instead of waking to my alarm so I could wake David at 6 to shower, HE woke ME up, saying, "Chris! It's a quarter to seven!!" I'd slept through THREE alarms. We rushed around and got everyone showered (barely) and out the door, but it was a disastrous morning.

After the boys were off to school, I collapsed on the couch and realized I was scheduled to work at 11:00 a.m. If I'd have had the energy, I'd have cried. The thought of getting into the shower myself and drying my long hair and even sitting to apply my make-up overwhelmed me. So, I sat for a bit, and worked myself up to prepare for work.

It was at that moment I realized that the fatigue I had was what kept me from waking up to my alarms. I was so dreadfully fatigued my alarms didn't rouse me. I've felt this before, many, many times, and wondered if one of my 'episodes' was beginning. Before I got into the shower, I went into my bedroom and set an extra alarm clock for tomorrow at 6. I really dislike the sound of this alarm, so I never use it. I will need it tomorrow.

After my shower, I sat again, and then went into the bathroom to blow dry my hair. My hair is curly, but not pretty-curly, or beautiful-curly, It is dysfunctionally curly! I have to blow it dry with a round brush, or I run the risk of frightening small children. So I began my routine and immediately needed to sit. My legs were trembling. My weakness was returning. I had tried to dismiss it in the shower. Now there was no denying it. I got my stool from the kitchen and finished my hair.

I rested some more and got out my bag of magic tricks. I slapped my war paint on and did actually start to feel like I could last the day at work. It's not how you feel, dahling.....

Work was fine. It was busy, but I'm able to sit. We're in fact nearly chained to our desks. I brought some fruit and protein snacks with me so I wouldn't have to walk to the cafeteria. The time flew.

Beau dropped me off so he could use the car today, being home from school, and I was SO glad to have someone pick me up. The walk to the parking lot would have been daunting.

So, the fatigue is back, and my leg weakness is setting in. I guess the question now is whether I'll get better quickly, or if this is going to turn into an acute episode of...whatever it is I have. Can I get through it without high-dose Solumedrol? Would I want to try?

I also am wondering what doc God has in mind for my treatment. Now that Dr. B is retired, who will care enough to pursue my case? I wonder what plans He has for any diagnosis for me.  I wonder if He is proud of the faith I have in Him. I do. I don't doubt for a minute that He will take care of all of this in His time. I know He loves me and I know how very lucky I am to be as healthy as I am. Working at the hospital helps to give me such perspective on how truly blessed we are. 

Good morning, Crushing Fatigue!

I always know when my good ol' pal, Crushing Fatigue has come for a visit. When my phone alarm wakes me at 6 in the morning so I can wake my husband for his shower, so he can wake Hayden for his shower  and the rest of the family sort of falls into line like dominoes...I wimper like a baby. Crushing Fatigue has reared its phenomenal head and is bearing down on me like a slothful hippopatomus.

And if that fun weren't enough, that hippo has some sort of hypodermic filled with sleeping potion. Well, that's not altogether accurate. The potion makes me feel like sleeping, for sure, but also makes me feel generally, well...ill. I suppose it may be called malaise. Some complex potion it is, because I also feel a bit in a stupor, as if in a fog, and a tad slurry. David wondered if I had just awoken from a nap yesterday when he phoned me, and I had been awake for hours. My short term memory is poor and my words are at times slurry. I'm most embarrassed to say David half-joked to ask if I'd had something to drink. I'm sure he knew I hadn't, and he joked it off by saying that if he was home all day with no kids HE'D surely have a couple during the day, and we both had a giggle.

So, another day goes living with the journey of my diagnosis. My legs aren't too awfully weak this week, which is good. They do hurt badly, do to the stiffness and crampiness. I am resting a lot due to the fatigue, so perhaps that is helping. The Boyzies are a very big help!

I got a book in the mail yesterday from a very good friend, one of my dearest friends, Dan, about spiritual healing. Healing in the sense of the healings Jesus and his apostles and disciples did in Biblical times, presumably. It was written by a friend of his about a Lutheran pastor who has the gift of healing, apparently. Very intriguing. I'm reading it slowly, due to my foggy brain. But I'm very compelled to learn what God has to say to me through it.  If it were from anyone but Dan, I would be a bit skeptical.

I have hit so many brick walls in my search for a diagnosis, sometimes absurdly so. The idiot docs I've been to are either closed-mided or plain lazy. I have seen a few wonderful ones, but for some reason, things didn't work out.

Dr. B. was SO promising!!! Spent 3 and a half hours with me at my first visit! He was appalled at the treatment I got at the Mayo Clinic in Rochester. He went through every single page of records with me. Every report every doc has written about me to see if I agreed -- then CHANGED it if I did not! He listened to me. I have to say it again. He listened to me.

He ordered more tests and sent me to a rehab doc who specializes in MS, and ordered an EMG/NCV and would see me back when the test results came back.  The appointment was disastrous with the rehab guy, so Dr. B sent me to a neurologist THAT day to document my weakness.

I called his office the next week to make a follow-up appointment to go over all my testing, and they said he was retiring. He was ill and wouldn't be back.

I was so sad.

Sad, firstly because he is such a delightful man. He works at the hospital I work in, and we adore him! He advocates tirelessly for his patients, and we have heard he goes home each night to eat dinner with his family, before returning to the hospital to check on his patients. SO compassionate.

Secondly, I had felt such promise. From God. He was putting me on my path to my diagnosis, and treatment. But, I would have to wait. Again. 

I have learned after times like these, and there have been so many, to pray for patience. To pray for a diagnosis in God's time. To pray for God's will. To pray to DESIRE God's will. To pray to be content if I never get a diagnosis; even if it means a wheelchair in my future.I have learned to be proud God trusts me to continue to challenge me and continues to build me up. I know I am fortunate to be healthy, to care for a wonderful family, to have meaningful work.