Tuesday, February 21, 2012

With Faith, I'm Signing Off...For Now.

It has been a while since I posted and may be a while until I can again. And I felt you all deserved to know.

Sometimes we all must take a break from the things that we love and though this is not my choice to break from blogging/being online, I have had to do it. There is a season for everything. I have found blogging and becoming an advocate for those with Migraine and chronic illness to be a passion and part of my purpose. Even so, I trust God will bring me back to it in his timing.

I am not well. I will refer you to my last post if you need to refresh your memory.

I have nothing to give anyone right now and that greatly saddens me as I care so deeply for all of you and desire to be supportive and reaching out to you. But I hope that my loved ones, my friends, my chronic illness buddies and you my readers will understand I must put myself and my health first. Actually, my body isn't really giving me a choice in the matter. This said, know I keep a journal of your names and pray for you daily. Even if you've only written me once. You are in my thoughts and prayers.

I will be going to Mayo Clinic for a very thorough evaluation in a couple weeks. So far my stay will be eight days not including two travel days but it could be extended. Most days are filled with appointments and testing. I received the schedule in the mail and was told that more testing/appointments may be added once I talk with the physician that will quarterback my care. In fact, I know there will be more added. I am not anxious, nervous or scared and am thankful. I am simply looking forward to going to a place where I know they will give me answers one way or another.

With God's grace, strength and support I get through each day. However, the days are long and difficult.

George or myself will be updating my personal CarePages during our time at Mayo. Please email me if you are interested in following those updates.

I am grateful for many things in my life including you all and I daily think on them. I've even written a list of things I am grateful for which is posted on the wall that I keep adding to.  I am determined to choose joy even though there is much suffering. There may be clouds overhead, but I know that the sun is behind them...no matter how long this storm lasts, the sun will come out eventually.

I leave you with a song that means a lot to my family and George and me. It is one I grew up with as my dad played it often. It was one of several songs he put on a CD just after I was disabled by Migraine disease to cheer me up. It is a song that is meaningful to my whole family because of the memories it brings. It is especially special to George and I and we sing to each other often...especially on bad days.
By Crosby, Still, Nash and Young: "Our House".

I wish you all Grace and Peace,

Monday, February 6, 2012

Joy in Prison

Until today, I had not left my house for four weeks. The psychology that goes into being bound to your bed and your bedroom is maddening. To be dependent when you are by nature driven... The term "cabin fever" hasn't applied to me since the beginning of this six and a half year long ordeal. I got used to being in my house.  But, aside from God's grace and the joy my husband's presence brings and the knowledge I have certain family and certain friends actively supporting me, my life for these last many weeks have been misery. Unless you are close friend/family and have read my Carepages, you are not aware of the severe neurological attacks I have been getting that have kept me bed bound. During these attacks:

*I cannot walk (i.e. looking down at my leg and willing it/telling it to move and it won't)
*I cannot lift my arms (feel like the force of gravity has increased)
*I have difficulties with swallowing (I'm an *SLP and I know the symptoms.)
*I have severe chest/rib pain
*I have muscle weakness/twitching/tingling/numbness in extremities
*I am confused about where I am, (Again I'm an *SLP.)
*I have difficult forming words/talking (*SLP.)
*I have difficulty concentrating and thinking (*SLP!!)
*I have blurred/double vision
*I am completely unable to regulate my body temp (shivering with layers on under several blankets or turning the bedroom fan on high even though it is 60 degrees in the house)
*I am so fatigued (beyond fatigued-forced to be unconscious) that even after a night's rest that I am UN-able to stay awake (George said I fell asleep eating with my face in my food one time), and the list goes on but items that are leading me to see a urogynecologist.(*SLP= Speech Language Pathologist-I worked with adults and children with swallowing and communication difficulties.)

I KNOW something is wrong. These attacks started in 2010, but did not last as long as this latest attack.  I saw a neurologist who specializes in MS on January 9th. And he referred me to Mayo Clinic. I've been denied twice because they do not have the resources and I've already had a lot of testing done, but the neurologist we saw did his internship & residency at Mayo and has made a personal referral as a last resort; we are waiting to hear back from that. If we do not get in... Well. I'm just gonna trust that God is taking care of that. Worrying is not going to change the outcome.

So, I have been trapped not only in my house, not only in my bed but also my body. It has been maddening. I have thought I would lose my mind at times. My anxiety, OCD and depression are all heightened because of the nature of my situation. Anyone would have these issues in my circumstances. One day when I was improved,  I called a good friend in a full-blown panic attack because I  had tried to leave my bedroom. I had been in my bedroom so long I was actually terrified to leave it even though I desperately wanted to. Thankfully she skills to know how to help me. And I made it to the living room.

Early this morning was my appointment with my headache specialist.  You would think I would be jumping for joy to leave the house. But, my anxiety was so bad I was tempted to call off the appointment.  This may have been my prison, but it is what I know, it is my world, and I know that my body does not function well with a lot of activity.

*If I take a shower, I am done for the day. No joke. Bed bound.
*If I try to work on gently increasing my stamina,  I am unable to move for 12-24 hours.
*If I walk from the bedroom to the living room, I must bring my walker so that I can get back.
*The one time I didn't bring my walker to the bathroom last week, I fell and had to wait until George got home from work because I was not strong enough to get the phone which was on the bed. For however long, I laid staring at the bottom of George's dresser, wondering how much time was passing and thinking among other things that I hate that dang dresser because it is oak.

There I said it. I hate his oak dresser. Its ugly.

But what does decor matter when you can't get your body to move?

With anxiety medication in my system, I made it to my appointment and back with my wheelchair; it was much less traumatizing than my last trip to get Botox in early January where I shook the whole appointment and George had to carry me up the stairs over his shoulder. I was so overstimlated, hypersensitive, and unable to move or communicate that he just left me with my winter coat & shoes on laying on the bed and went to work. I don't know how long it took for my body to respond to my cognitive commands.

Today, I was thrilled with how my appointment turned out; we are making positive changes in my prevention protocol. I feel the ball might be finally rolling in the right direction again. I got trigger point acupuncture and cold laser therapy for my Migraines. I got to spend extra time with George.

I was fine (relatively speaking) the hour drive home until George turned left onto our road, in which we immediately see our house and a scream that felt like it started in the pit of my stomach came out of my mouth like a roaring fire. It surprised  me as much as George. I completely lost it without knowing it was coming. One second I was talking about prescriptions. The next minute I was completely freaking out. I cried and begged him to take me anywhere but home...to his work....I'd lay on the floor of his office...he said it would be too overstimulating for me there...so I said I'd stay in the car in the parking garage...he said I needed to rest...Take me to Kentucky to my parents or to Iowa to his parents. He said he would but he couldn't- not now at least. He promised on his next day off he would drive me somewhere even if just around the block (I'm too weak by the time he gets home to even walk much less go down stairs to the car).

I screamed so loud he stopped halfway up the driveway. He didn't even open the garage door. If someone had been home in our neighborhood I'm sure they heard me.

He was bringing me back...to my cell, to my prison, to nothing, to no interaction...back to where my chronic illnesses live: the Chronic Migraines, the constant daily head pain, the OCD, the anxiety, the panic attacks, the depression so bad I wish to have someone else's cancer so they can live a full life and I could die and get away from this misery.  All these live in my body, but he was bringing me back to the place I experience them day in and day out.

He said "I understand." But he couldn't. No one can. I begged him to not make me go in.

And then he said..."But Giselle needs you." Giselle, my little 10 pound four year old rescue cavalier, that has an anxiety disorder and clings to me. I got quiet and thought, "he is right. She needs me."

I cried when he opened the door to the car and when he assisted me up the stairs (I was stubborn and determined to get up myself though that was impossible.) He brought me to the couch and my body gave out.

And then I heard it: it what the running of the bulls must sound like in Pamplona, Spain. He had gone to the room where the dog's crate is and let them out. They were trailing my scent with full speed ahead.

Giselle made it first. Her tail wagged so hard that her whole body was wagging. She licked me and rolled on me and rubbed herself into me. She was jumping for joy.
 And then Zoe plowed through to get some love and some licks.
And then my Mr. Knightley with his absent ball&socket hip joints and arthritis got up on the couch, stepped over all Giselle and Zoe and let me know he was there in the way only Knightley can.

There is always joy in prison. You just have to search, find and be thankful.