Easter Vigil and Easter - Not the Holiday I had Planned

My journey through the rest of Holy Week and Easter did not turn out as planned. I last wrote on Good Friday, and though I had the best of intentions of completing my meditations on Easter Vigil/Holy Saturday and Easter, a big thing got in the way. Easter Vigil began like any other Saturday before a Sunday holiday - preparing good food, enjoying the time puttering in the kitchen with my husband. I wasn't feeling my best, but not so bad that I could point out that I was feeling any worse than usual.

We gathered up our bells and went to church, where I realized something might not be right. The Easter Vigil service starts in the dark, out on the porch of the church where the priest strikes the new light of Easter and lights the Paschal Candle. The congregation lights their own candles from this great big special and beautiful candle, and then turning to share that light with their neighbors before filing in and filling the church. The first part of the service is then conducted solely by candlelight, as we read and sing together of the salvation history, from creation through the resurrection. Just before we read the Gospel, the whole church is lit up, we sing a beautiful Holy, Holy, Holy while ringing our bells and removing all of the black drapes that have covered the flowers and dressing the altar and clergy in their glorious golden Easter vestments. Easter has arrived!

With my uncertain balance, I waited inside for the rest of the congregation and choir. I had a bit of a headache, but nothing too horrible. I did notice myself flinching from the brightness as the lights came on and we completed the service, but I put it down to being tired and late at night. Joining the feast after the service I still felt a little odd, but again put it down to eating a light supper at 11:00 at night which is totally outside of my usual routines.

I went to church on Easter morning with a headache, thankful for my Easter bonnet that shaded my eyes from the direct glare of the overhead lights, even though I was still staring into the bright stained glass window that forms the wall behind the altar. Later, at brunch with my parents I noticed that the headache hadn't eased and that I did not eat as much as usual.

It hit that afternoon after the earthquake. My husband and I had gone back to our bedroom to lie down for a while and enjoy the quiet. Suddenly the quiet was shattered by the unmistakable sound of the house shaking with an earthquake. No big panic, but the intensity kept growing and the shaking kept going. At one point I stood up, thinking that it was over. No dice. It just kept on, and I began to feel a bit of panic as all of my childhood "earthquake preparedness" stories bubbled up, and the terrors that I thought I had put away came with them. Finally it ended, and we lay back down (after spending quite a bit of time looking it up online!). I stoically rode through the aftershocks, privately waiting for "the BIG one" that my childhood fears told me was still coming - especially since the cat was still crammed into the few inches between the floor and the bottom of our bed!

Shortly after that I noticed that my headache was ratcheting up in intensity. My husband was ready for dinner, but I was starting to get a bit nauseous so I passed. By six or so I called the nurse line to find out if I should be going to urgent care. Around seven the lovely nurse called back after conferring with a doctor - with my symptoms I should go to the Emergency Room.

By eight my mother had joined us for the wait. I had blood drawn and a couple of other tests. By that point I could barely walk. Finally, a bed was available and I was taken back. I've never been so happy to have drugs that work extremely quickly in my life! Unfortunately, they seemed to wear off quickly, too. A second dose and they sent me home around one in the morning.

It didn't do much beyond make me feel sick to my stomach. I think I slept a little, but not much. I listened to the rain and my husbands breathing until the alarm went off. My mom was coming to sit with me while my husband went in and got things started for the week with his staff so he could head back home and not have the phone ringing off the hook. I was in agony. The neurologist was called, and decided that we needed to try a migraine medication. Migraine? I've never had anything anyone ever called a migraine before, but I'll try it if it might help. I'd probably try anything at that point. It helped. Immediately.

So now I am working on yet another possibility for all of this pain and frustration. Migraines. In the meantime, we will still be doing a spinal tap to at least get a baseline reading if not a definitive diagnosis on the intracranial hypertension and removing my gallbladder as soon as we can get it set up. I'm so tired of being in so much pain!

Let's Try This Again

I am thankful I have a wise neurologist. We started the lumbar puncture yesterday but he was unable to get the needle where it needed to go. There were several tries, but it just would not get to a place where he could feel safe completing the procedure. So now I have a very tender lower back where the muscles and ligaments protested the intrusion of a large needle and a wait for Radiology to call to schedule a time for me to go to the hospital to have the procedure done under Fluoroscope.

There is certainly a sense of deflation that it has not been done, as I had spent a great deal of time preparing myself for the follow up and after care that I knew I would need and now I must start the waiting and build up process over again.

Today's Procedure and a Blog Break

Today I will be seeing my neurologist for a lumbar puncture, also called a spinal tap. I had no idea that a spinal tap was anything other than a really loud band that I never listened to until I had to experience my first one 9 years ago. It is not a difficult procedure, but one that can have some pretty serious complications if it is not done properly.

Essentially, I will be going to the neurologists office where he will be inserting a large hollow needle between two vertebrae and into the spinal sac in my lower back. First, he will check the pressure of the fluid and then decide if any needs to be drained off in addition to the small amount needed to be sent to the lab for analysis. Once the needle is removed, I will need to stay very flat for as long as it takes for the little hole to stop leaking and heal over. It is this leak that causes the headaches that I am known to have had with past procedures.

For a better explanation, you can visit this link. It goes into really deep detail, though.

I will be away from my computer and lounging flat on my back in a pillow less bed for a few days in any case, but hope that this one will heal quickly for me. My last one took me 14 days to be able to sit up again without excruciating pain. See why I've been trying to put this off? Unfortunately, a lumbar puncture is the only way to make a definitive diagnosis of Intracranial Hypertension so here I am.

I am looking forward to some resolution from this. It should give us some answers as to my headaches and vision disturbances, and to know where to go from here. In addition, it will hopefully create a baseline record to work with in establishing or disproving the diagnosis of Idiopathic Intracranial Hypertension that I have lived with for the last 9 years.

Your thoughts and prayers are appreciated. Thank you! I hope to be back to my usual lurking and occasional commenting on your blogs soon!

Update for Friday

Just a quick update (unless I start rambling, which is a distinct possibility!) for today. It looks like posts will continue to be sparse around here for a couple of weeks longer, as I am preparing to undergo an MRI and Spinal Tap next week (Monday and Thursday). In the past I have not had a great recovery time for Spinal Taps - think 9-14 days flat on my back, unable to lift my head, with an agonizing headache - but have great hope that with this doctor and his understanding of the Idiopathic Intracranial Hypertension recurrence that we suspect and are creating a baseline for diagnosis of things will go better. Also at some point in the near future I will be meeting with a surgeon to discuss the removal of my gallbladder, which is apparently quite full of some really nasty stones. The diagnosis is not new to me - I have known about having gallstones for 5 or so years now but have kept the attacks under control with diet and exercise. Unfortunately they have now grown to the point where that is no longer an option. Ugh.

With Lent being nearly over, I must confess that all of this medical stuff has been an important part of my Lenten discipline of taking steps on the path of learning to truly love myself. I find that I have neglected and denied my physical self and needs for so long that now I am paying the price. It seems overwhelming that it is all coming at once, but I know that having opened the door, everything is rushing in because my body can no longer prioritize the pain and needs that it has. Working slowly through this, especially with the use of Reiki, has been an amazing experience so far. Yes, I do still get really depressed about it. I have had my share of "if this is what I truly am, just take me out and shoot me now!" moments. In the end, I know that I will be healthier, clearer, wiser, and more compassionate. The journey, however, is not an easy one.

I find that in embracing the 21 day self-healing portion of my Reiki 1 training, I am getting a better grip of how the Reiki energy is working on me. I would have expected it to go to the physical level of the dis-ease that I am manifesting, but although I find that it has an effect on it, that is not the primary level of work. Neither is the emotional level, though it has done wonders for me at that point. The energy seems to be working at the very deepest spiritual levels to find the lessons that I need to learn in order to not repeat these physical issues. Most of them are lessons that have appeared in my life numerous times. I would pat each issue on the head saying, "oh, look! I need to deal with (name the issue)! Isn't it cute?" and then shove it back under the rug and tell myself that I had dealt with it sufficiently. Hah!

While I believe that I must treat the physical illnesses, I do believe that there are deeper lessons and issues tied to them and that in order to heal these chronic issues I must work on the deeper levels even as I work on the physical level. It certainly isn't easy, and I find my dreams and unguarded moments full of thoughts of things that I had thought were long gone and dealt with. It can be very difficult at times, but I know that this time I am aware enough to take each one to God for counsel, learning, and ultimately, healing. I may not be strong enough to see or acknowledge the complexity and enormity of some issues, but I am doing what I can with what I have, and that is enough. God is with me and will give me what I can handle.

Enough rambling! Have a pleasant day, and I hope to be back soon!

Pathways

I was reading Goddess Leonie's post today about walking her wise woman way over on Goddess Guidebook when I was struck by the idea of remembering who each of us is inside, and that we have a connection to much greater wisdom than we know if we would only take the time to listen and plug ourselves in to it.

Wednesday I went to meet my new general practitioner, and I handed her a long list of current symptoms and drug intolerances. Our family jokes about it, but we have not been known for having easily diagnosed or treated medical issues. This is part of my path as a healer, because if I could simply go to the doctor and take drugs to fix (or cover up) things I would never have had to turn to alternative medicine. Not being medically "normal" has opened my world wider than I ever would have imagined. I see plants as allies and friends, able to ease some of my discomfort when little else can. Folk remedies and energy healing bring their own relief. But I walk this path alone in so many ways.

Like Goddess Leonie, I struggle with trying to fit in, trying to shape myself so that I can be a part of that "sea of normal" that she describes. Most of the time I do a pretty admirable job of it, but at what cost? Since July I have been trying to understand this cost to myself. I have hidden my light under a mountain of rubble in the effort to please people who only care about how much they can control and manipulate others into doing things that are detrimental to any individuality they may possess. For two years I focused my life on fitting in at my workplace, doing my best to not let on to myself that I was letting their ridicule of me destroy any personal strength I may have had. When they destroyed me by their final deep betrayal I began the long process of slowly digging out of that pile of rubble that I had pulled down upon myself. Only now am I beginning to see my light shine more brightly than it has in a long time. I am returning to the wisdom of the path I was created to walk, listening to the knowledge deep inside of me that tells me how to ease the headaches, how to use what little energy I have to make it last longer, how to care for myself and eventually others.

I may not be around as much for a time, as my symptoms are progressing. I have less and less tolerance for the brightness of the computer screen (or pretty much any bright lights) and the headaches, general soreness, feelings of illness and fatigue are worsening. I have an MRI and Venigram scheduled for March 15th and Spinal Tap following on the 18th, but am on a list to get in earlier if there is a cancellation.

Quick Update

This past weekend I had two episodes of total blindness. Each lasted a minute or so, and I just ignored them. Yup. Clear signs that things are getting worse, and I ignore them. Of course I've been ignoring the escalation of my symptoms for a long time. I guess that is what happens when your doctor tells you "it's all in your head" and he isn't making a bad joke (he isn't my doctor anymore, either). With my eyesight getting worse anyway this was a wake-up call and I went in to see my optometrist this morning. He sent me over to urgent care, where I managed to baffle three doctors. On the bright side, I provided an opportunity for them to play with a new "toy" - a new instrument for performing visual checks of the back of the eye. From there I met with a neurologist and tomorrow I am heading to an ophthalmologist to establish a baseline record and figure out where to go from here. It sounds like an exciting ride, as my experiences with IIH (Idiopathic Intracranial Hypertension) symptoms have not been this thoroughly checked out previously. Don't get me wrong, my diagnosing doctor was wonderful and did what was available at the time, but there is more that they can do now.

An Update and Some Felted Flowers

Things have been busy around here... I have an appointment with a doctor in a couple of weeks to start the process of getting to know them and developing a new network of specialists. When I was first diagnosed with IIH I had a team of caregivers including my optometrist who first noticed something wasn't right, my primary care physician, a neurologist, and a neuro-opthamologist. Doesn't that sound exciting? In all honesty, it was the best care I have received so far. Once my insurance changed I was assigned to a doctor and neurologist who told me that "it was all in my head" and that I was simply making all of this up to get attention. The neurologist even scheduled my therapeutic Lumbar Puncture (aka spinal tap) just to make me stop telling him something was wrong. It was such a horrible experience of care that I have avoided doctors for the last three or four years and successfully managed to convince myself that I wasn't feeling any of the symptoms again. Thank you to everyone who expressed support for me on this journey of learning to be compassionate with myself through all of this. I do suspect that I will be keeping you somewhat abreast of what happens as there is little out there about living with this condition. If it can help someone else who is living with this then I will do what I can. Perhaps it will even keep me honest with myself about taking care of it.

I have also been crocheting flowers like crazy. The flowers turned out quite lovely, and I even managed to remember to take a before picture of the last two before I felted them! Below is a picture of two white roses - one large and one bud, that I took prior to felting along with two similar felted flowers.

Below is the collection of flowers I delivered to At Home With Laurie Ann, a local design store that I made this particular batch for. We had lots of fun dreaming up places to put felted flower pins, and I did in fact put one on a felted hat that I had made a while ago. It looks really cute! To the center left you can see the large white rose from the above picture while the white bud is next to the turquoise flower to the right, both after the felting process.
I hope to have some more pictures up soon of the projects I completed as Christmas presents this year. I know it is a bit late to be showing of Christmas projects, but I used my dad's camera to take the pictures and then forgot that they were there until recently!