December 2009 brought depression and anxiety, which seemed to only worsen through most of January. Finally, however, near the end of the month, I received a few ideas about what might be making the depression worse, had a plan in mind to try to lessen it, and had a new conviction about getting my story out into the world

Watch my YouTube video using the following link, or read chapter 14 below. (This is another long chapter, so you might want to bookmark it so you can come back to it.)

 

 

14. January 2010

Instead of feeling victimized by circumstances beyond our control and unconsciously giving our power away, we can, through the act of blessing, consciously empower ourselves and take charge of our own lives and destiny regardless of what is happening. —Blair Borders, Double Vision

Health is a good gift. We have reason to be grateful to God for it. But does this mean when illness comes, we have no reason for gratitude? Not if we remember that the strength to bear illness courageously is a great gift too—a gift that comes from a heart that trusts in God’s goodness. —Bill Smith, Living with Faith, Hope, and Love through the Holidays, Holy Days, and Days Between

Practicing self-care and self-honesty is your duty. … This is not treating yourself as if you are more special or superior. This is simply caring for yourself as you would care for a child. You are your own parent, and you must care for yourself. Just as the mother would not provide unsafe substances to the child, you must behave in the same manner, and exercise the same caution, as the mother to yourself. You must treat yourself with the same amount of love, care, and protection that the mother brings to the child. Nourishing yourself and nurturing yourself with honesty are acts of self-love. —Jeri L. Glatter, Lessons from the Trumpet Vine

 

Friday 1 January 2010

Well, we made it through 2009. That’s all Mike and I could say last night while everyone else was toasting and cheering in the new year. They were celebrating, and we were relieved and hoping for a better year. Of course, the year wasn’t all bad…it was mostly great until the fall. But still, here’s hoping 2010 will be as good all the way through as 2009 promised to be.

I start the new year with no more anemia medicine. … So for right now, I’m starting the new year by taking fewer pills. According to one old tradition, whatever you’re doing on New Year’s Day, you’ll be doing the rest of the year. I’m hoping that includes “taking fewer pills” instead of just “taking pills.”

The thought of stopping the anemia medicine, of course, is bittersweet, as it means that I have been on it for three months, which means we lost our baby three months ago. Three months ago, all this really scary stuff started. It seems unreal that it could have been so long ago. And so long that I’ve been unable to be really happy, … to really enjoy life. Two months since I’ve looked forward to having another baby. I’m once again all confused, starting with a halfway normal, happy feeling and going to sadness. Why can’t I do one reflection without running back to my lack of sight or our lack of a baby?

 

Sunday 3 January 2010

Yesterday evening was more drama about intimacy. Mike wanted intimacy, but I started crying when I realized that inside, I was feeling panic. I shouldn’t panic, shouldn’t be worried. I mean, I know I’m afraid of pregnancy, but sex doesn’t have to lead to pregnancy. So why the panic, the fear? Part of the problem is that we kiss, and I’m happy and liking it and open my eyes to look into Mike’s eyes. But then I just see shadows instead of his eyes, and I get upset. And otherwise, I think I build up my worry … and I psych myself out before we ever get started. That, and it’s been so long that [if we move “too fast”], I fall out of what little bit of mood I’d been able to find. I’m so frustrated and disheartened that even a few hours later, I cried myself to slep while praying for help for what I don’t even understand. I want so much to be a mother, yet I’m terrified of becoming pregnant and losing my sight, and I can barely even get intimate with my husband.

I hold myself at arm’s length from him because … I feel like I’m not good enough for him, or like I don’t deserve him because I can’t do anything for him except make money.

And I don’t remember being truly happy for a long time, not real happiness, real contentment. I fell asleep praying for help with that, too, and dreamed finally that I did find that joy again, in an amusement park. … And I dreamed that I realized one day that my vision had returned, so gradually that I hadn’t noticed. Yes, my dreams are still sweet, at least.

Mike sometimes feels he’s lost me, he says, and I wish we could find me…

 

Monday 4 January 2010

I was upset again this evening—another headache. Probably brought on by a multitude of things. … So I’m trying not to lose faith that my eyesight is improving. … I’m sick of my life sucking, I told Mike, because it’s not something I can influence in any way. And I know in many situations, the only thing I have power over is how I react to the situation. It was much easier to be positive and upbeat when my vision was making rapid progress, but now, sometimes I just despair.

Mike tells me to keep my faith and keep praying (strange, coming from him) and tells me that he thinks my vision is better, because my reactions are better. … And … he said I can’t really know I’m getting better or worse until we have my vision tested again.

He makes good points, but oh, my fear! And the what ifs. They’re terrible. And I’m so tired of being sad. …

Life used to seem blessed to me—my life, that is—and so now, I feel like I don’t know how to deal with this hardship, even though it’s a much lesser hardship than many other people experience in their lives. I wish I didn’t keep feeling like this is the “catch” to my otherwise blessed life—no baby, and reduced vision and functionality for daring to try to have a child in an otherwise happy life.

[Add to this that] Mike has run out of unemployment benefits. Sort of. They’ve stopped early. … So he’s applied again, beginning for the new fiscal year…

 

Tuesday 5 January 2010

Last night as [Mike and I] were lying in bed, we were discussing all manner of things again, especially my recent sadness and my headache last night and why I think he’s the most wonderful, patient, understanding husband and how much I understand how frustrated he must be sometimes, given how frustrated I am and that I don’t think I would have healed emotionally half as well as I have so far without him and his support. Then Mike further qualified himself for sweetest, best husband of the year. He said he wished he could bear our children so I could have the children I so want without having to be so afraid about my sight.

I couldn’t say anything. I was trying too hard to hold back the tears, to keep from sobbing. I wanted desperately to tell him how much that meant to me, but there were no words. No possible words can express that. After a while, he apologized and said that he had meant to be sweet, hadn’t meant the sentiment to be upsetting, so I had to speak through the tears that I just couldn’t hold back to tell him how sweet they really were.

 

Saturday 9 January 2010

My vision has stopped making drastic improvements, so it’s really hard for me to tell if change is being made. … Maybe I’m just learning how to cope a little better. But I’m finding in the past week or so that I’m not nearly as sensitive to light glare and different types of light as I have been for the past several months, and I’m having an easier time reading small fonts on the TV at a distance than I was. … I can read smaller and smaller things more easily still, so I’m led toward thinking my visual acuity is improving more. … Bah, but who knows? (I still start to panic sometimes, like trying to walk in snow in a strange parking lot, when the snow blindness seems worse than it ever did before … and [I can’t] distinguish any different depths [of snow] and people are walking by quickly and cars are zooming by but all I can do is shuffle along and hope I don’t fall or stumble. Nearly every day, I think about how much I feel like I’m “old before my time,” having vision problems I “shouldn’t” be having until I’m in my 70s or 80s, at least. And I know how they feel, I think. I just try to keep my faith and keep praying, as my husband and friends remind me to do.)

 

Monday 11 January 2010

Finally got [an] article on IIH and visual outcomes. … I downloaded it tonight, all 4 glorious pages of it. …

None of the articles I’ve run across seems to mention anything about outcomes in women who’ve had these issues and optic nerve sheath fenestration (ONSF) and then become pregnant again. I’m thinking in a few days, when I can get the gumption up to it, I might start trying to contact the authors of some of these papers to get some more information, if they have any, and if they’re willing to share. … I’m pretty sure … all anyone will have to say, as that’s all the main treatment is—lose weight, reduce sodium, take acetazolamide (diamox), control your headaches, blah, blah, blah—but maybe something new has been found. I really want to follow up with [the] people who did a STUDY about weight loss and get more information about that, because [the] little teaser [in one of the articles] was really unsatisfying. It is really tiring to try to take control of your life, you know?

 

Friday 15 January 2010

A rough time this afternoon. Last night, I was a little sore in my neck and shoulders … but … no matter what position I moved to, … it was uncomfortable, and pain kept getting worse, my head hurt, and my back hurt, like burning in my spine. Then I started hearing, very faintly, the “whooshing” in my right ear. I started crying…. I couldn’t get comfortable because I was in pain, I couldn’t be a wife to my husband (STILL), and I was pissed. I was pissed at life. So I got up and [went] to sleep in the living room, in the recliner.

Most of the day, I’ve been okay, but a little frustrated. Been focusing on trying to drink plenty of water. I exercised early, I’ve stayed away from coffee, I’ve eaten only a little. And still this afternoon, I’ve heard the whooshing with my heartbeat. Sonofabitch. I’ve panicked. I’ve sobbed. Every time I even THINK I hear the whoosh, my heart does a double-beat, and here it is, whooshing steadily for a couple of hours today. I’m trying to lose weight, I’m watching my sodium intake, I’m taking in water, I’m taking my pills, and still the whooshing. And keeping me from sleeping at night. I’m miserable. I’m an emotional mess. I’m terrified. And I’m pissed at life. This isn’t fair. I should be happily pregnant with our baby and should be able to see. I shouldn’t be freaking out because I hear whooshing in my ears. The fucking occurrence of IIH in the general population is 1 in 100,000. In obese women, it’s still only 10 to 20 in 100,000. Seriously. Why the fuck me? Well, any number of things…it’s the perfect storm of possible contributing factors—I’m nearly in my third decade, I was in my first trimester and am also postpartum. I’ve used hormonal contraception. I had iron-deficiency anemia after the miscarriage. Lucky fucking me.

I’m trying so hard not to be pissed off right now, but all I can do is cry in frustration. And Mike and I wonder if the exercise is causing the exacerbation or aggravation of symptoms. … It worries us. I’m trying to exercise and lose weight, but if exercising is going to make things worse, it’s discouraging. But maybe it’s just a small hump we have to get over. I’m just so scared. No more Medicaid to help if I have problems now. … I don’t know what to do, and my thoughts have been scattered all day, and I’m freaked out. And pissed off at the world. For the first time ever, I’m pissed at the world in general. That’s not at all like me. I just keep wanting to say, “Fuck life. Fuck the world.” That’s not at all like me. And of course, I don’t really mean it. But I am pissed off. And so terribly scared. I mean, just when I had started to think that I wasn’t so afraid, maybe, of being a mom, of getting pregnant and having a baby, so long as I could get myself to have sex again … this happens. I was feeling good enough to exercise again, optimistic again, and then this happens. Fuck. Fuck. Fuck.

Fuck it.

 

Saturday 16 January 2010

Mike and I were trying so hard last night to figure out what might be causing this problem that might be an IIH flareup, but we were having trouble. Could be the exercise? The weird way I laid on the floor Wednesday? Too much sodium? Not enough water? Hormones? But then yesterday when I was looking for all sorts of information, I ran across a website in the UK that said that one associated “cause” was iron-deficiency anemia, and it clicked with me then that that could have been one of the triggers for me to have developed IIH. It didn’t hit me that that could be one of the reasons this flareup is happening (more pain today, in my back and neck and head)—I stopped taking the iron because I felt fine, felt energetic, etc. But then [an author] I’m working with on a very exciting project[1] … reminded me that what’s within a “normal” iron level can still be considered iron-deficiency anemia, especially if you’re anemic…So just a few minutes ago, it hit me…duh, I stopped taking iron at the beginning of January, and here it is 2 weeks later…maybe that’s a contributor. … [Iron supplements] are cheap, so we’re going to go ahead and get the prescription refilled this week with my diamox and see what happens. Maybe this “bright idea” was the help from God that I was begging so intently for just an hour ago while I was terrified and sobbing…

I called to have these prescriptions refilled today, because I was having pain spikes and anxiety spikes. And now, more than ever, I want to call Dr. H to ask about my medications and my problems. I had a bout of several crying breakdowns [across] about an hour this afternoon, worrying about all of this. I kept thinking, “Fuck life. Fuck it all to hell.” And that made me cry. And I told Mike that I understood if any of this got to be too much and he wanted to leave me because he couldn’t deal with it anymore. I’d be sad, I told him, but I’d completely understand. And I would. But it would also free me to return to … live with my parents and to be helped by family and friends who live in the area. Up here, all of my friends live so far away that they aren’t really helpful in a day-to-day sense. …

But I kept having crying bouts, which would surge, then I would be in too much pain, so I’d have to stop crying. But then I’d be in pain, so I’d cry, and I’d cry too hard, so I’d have to stop because my head would hurt too much. At one point, I heard my thoughts very clearly say, “Just kill yourself. It’s the only way to make the pain stop.” That made me sob for quite a while. I’ve never before thought such a thing. And then “Just kill yourself” … kept repeating in my head. It was so scary. Of course, I don’t want to kill myself, but what the hell, man? I mean, it just kept repeating. It was so fucking scary.

Mike told me it’s my anxiety causing all these problems. …. I try not to tell him when little things bother me, because I’d be telling him all the time, … but after a while, these things add up, and they start to really bother and hurt, and freak me the fuck out. I told him that I feel like I don’t have any control over my life anymore. … I don’t have control over [my bodily functions, even] … my body demands, and I have to follow. … I have to depend on others to take me to see my family, my friends, to take me shopping so I can get food—really, to do anything to further my existence (except my own cooking) requires other people.

I keep thinking that I need to empower myself, but I have no idea how. I’m lost. I feel like a toddler lost in the woods.

***

Most worrying of all, of course, is that my vision has been steadily worse this week. At first, I didn’t really notice. … But the vision has been getting more grainy all week, and the visual field in my right eye has shrunk again. It is smaller. Sure, it could be all in my head, my anxiety. .. All I want to do is sleep, I’m so fucking worried. But I have to work. So maybe this is a panic attack, an anxiety attack. Like last time. And I have tons of work I have to get done, because I can’t afford to not work, with the money we don’t have, and with [my medication] now costing more … Fuck. Fucking life.

And I can talk with Mike and be fine one second, then step out of the room and start bawling the next. I try to think positive, think about how happy I used to be, and I bawl. I try to think about how to be happy, about how happy I could be, and I bawl. I start laughing at some stupid joke or something funny Mike says, and I start bawling while I’m laughing. I hate days like this. They drive me nuts. It wouldn’t be so bad if it were just a day like this here and there, but it’s been several days of this. Enough of them to really freak me out. … Fuck. Fuck. I want to be normal. I want to be not miserable. I really want to be happy, but I’d settle for not miserable.

 

Sunday 17 January 2010

I see the long years of this illness and the resulting sadness stretching out before me, and it overwhelms me. Because I am sad and depressed, Misha is sad and depressed. I have no insurance for care, and that threatens to greatly impact my level of care, our quality of life. … I haven’t felt normal, not right, in so long. I can’t reconcile myself with this.

In the beginning of this illness, I had the hope that it would resolve quickly once I got better, that I would be a temporary sufferer and that IIH would go into remission. I’d always have the vision “kisses” to remind me, but the main problem would go into remission. But now? Now it has come home—it has sunk in over the past couple of months that this is a disease that will be with me for the rest of my life, affecting everything in my life. The past week, especially the past couple of days, have been scary with pain flare-ups and grainy vision. And what do I do with no insurance ? I pay $239 out of pocket a month for one medicine to hopefully help keep things under control. I try to work, to get enough done to earn enough money to pay bills and cover the costs of medicine and maybe the occasional doctor visit. And I try to research my condition, to talk to others online who are going through the same thing and might be able to offer some guidance, some knowledge that the doctors may not have. And I cry. A lot. And I barely have enough energy to make it through a day. I sleep more and more and rest less and less, and I cry so much that my face feels chapped from the tears.

And Mike, poor Mike tries to comfort me and take care of me. He cooks and cleans so I can work. And he takes me to appointments and grocery shopping and tries not to complain about his own anxieties. And he’s worried. I can see it in his face. I sometimes can’t look at his face because I know what I’m going to see there…the sadness, the worry, the pain, the fear. He has to see all these things in my face. So I try not to look at him so he can’t see them. I try not to cry in front of him. But sometimes I can’t help it. It seems sometimes all I do is cry. Until my head hurts so much that I have to stop crying.

What happened to me? Where is the me who is in control of my life, who is empowered? Where did she go? Why can’t I find happiness any more? Why do I cry anytime I think of something that should make me happy? Instead, now I’m forgetful and sad and lost. I don’t take charge or know what to do. I just waffle, indecisively, back and forth, forgetting what I just said, what I just decided, what day it is. I miss people. I feel isolated, away from everyone. I try to take charge by learning more about my disorder, but then I just get sadder, the more I learn. No, I don’t have to be just like everyone else. But what makes me so goddamn special, that I shouldn’t have to suffer while they do? What makes me think I can do any better when they haven’t been able to for years and years? What makes me so freaking special?

I try telling myself, over and over, that I can’t control what happens to me in life, only how I respond to it. That used to work. I can’t seem to be able to control even that anymore. One minute, I’m laughing, the next I’m crying. Sometimes I’m doing both. Part of the anxiety and depression may be caused by one of my medications, so I’m calling my neurologist about it tomorrow, but people with my disorder (any chronic disorder, though, really, right?) have a higher incidence of depression and anxiety than their peers. But surely this isn’t right. Or maybe it is….maybe it is, because the reality has finally set in, like I said, that this is something I have to deal with forever. But, of course, it couldn’t be something that people really know about, that people have devoted time and energy to studying, because it’s not an immediate threat to people’s lives. Just their livelihoods, their sanity…. This disorder has been recognized for more than 100 years, and the standard of treatment is the same now as it was in the 1970s. We still don’t know for sure what causes it or even, really, why the treatments that sometimes work actually work (or not). The only thing we’re sure of is that it is USUALLY in obese females of child-bearing age. But not always. And weight loss doesn’t necessarily get rid of the problem. And sometimes you can’t lose the weight because exercise hurts too much…

Jesus, how can I freaking stay positive with this? Honestly? I’m trying so hard, but I’m failing miserably…

***

Well, I’ve calmed down now. A couple of Tylenol and a talk with Mike made most of the fear relax hours ago. I managed to exercise this afternoon with no ill effects, but about an hour and a half ago, the headache and the accompanying neck pains (only mild back pains) came back in force. So for most of today, I have felt much better than yesterday and this morning, especially emotionally. But when this headache hit me again this evening, wow, what a difference it is making on my energy (and, I’m guessing, on my coping skills, if I were to start thinking any negative thoughts and hadn’t already taken a Vicodin).

Our hypothesis is that the exercise may have exacerbated the symptoms of the IIH (some people in the online support group I joined say they can’t do ANY exercise, and others say they can’t do anything that raises their heartrates) … and [we think] that me stopping my iron supplements at the beginning of the month may have [exacerbated the symptoms] as well. … My OB had said I could stop taking them after three months if I felt well and wasn’t feeling tired. I was feeling great, strong and healthy and up to exercising…obviously. Maybe stopping the iron or starting the exercise alone may have caused the problem … but we think the combination was just too much. … So I started the iron supplements back up last night and, again, for the most part, felt better today than yesterday. Just the emotional roller coaster this morning and the crappy vision today. And this bad headache tonight.

I’m very worried about my vision. And I’m calling the neurologist tomorrow about my medicines and asking him about his ideas on this stuff. … And I may call the ophthalmologist. Mike and I hate to waste the money on a visit to see him, but my vision is basically back to where it was about two months ago. And my headaches are back to where they were about two and a half or three months ago. … This is especially terrible because early this week, I was very happy and feeling great.

 

Monday 18 January 2010

I just logged on to Facebook to make a silly comment on my status and saw a note on [a pregnant friend’s] status from yesterday about the baby being active inside her. … [S]he’s due mid-February. Holy cow! A beautiful baby girl for her! … So wonderful. And I haven’t seen her the whole time she’s been pregnant. I miss her so much sometimes. I never thought I’d be out of her life when she got pregnant. And we should have been pregnant together…

Our birthdays are together, we lost grandparents together, we experienced so much together, and I always expected us to do this together.

I’m sad for me and Mike but so very, very happy for [her and her husband].

***

Just got an email from [Mike’s grandmother]. It’s good for many reasons. Loving, supportive. I initially wanted to save it for the story in it, so her story can be preserved for Mike’s children. Then I realized he may never have children for it to be saved for. But even so, I can save it, and maybe someone can cherish it and value it for the beautiful story it is, like I do. …

 

Dear Stephanie,

You have been so much support to Mike, and now it has become his turn. That is what marriage is about, and we are so happy that Mike found you. You are just right.

Tell him not to be discouraged. This interview is the first in a long time, and certainily in the right direction, but it would really be no surprise if there had to be several of those as well, before he found a fit. We all are praying for his success, but there is time in everyone’s life when it looks as though it is impossible to get through it. Mike’s grandfather, Bob, took me on a honeymoon and his boss, the manager of a grocery store, fired him. A new wife and no job! He got a better job at the newspaper office. Then, his coworker asked him to do some cartoons for an ad and he did. The coworker [then] erased Bob’s name and filled in with his own. Bob could no longer stand to be around him, so he quit and took a job with a friend who was starting a special newspaper. When he went to get his check, there wasn’t any. This went on for 3 or 4 weeks, so he confronted his friend, and the friend told him the company was going broke. He was out of a job again and we had 2 children by that time. No job, a wife and 2 children to support! I was thinking of entering the work force, but ddn’t know how. Then he applied at both the Oregonian and the Oregon Journal. The Oregon Journal was [first] to reply with an offer, so he took that, then the Oregonian came through with an offer as well.

My uncle had a friend with a moving truck, so my uncle got him to drive us to Portland, and I rode in the truck, because we didn’t have any money for my transportation.

Then my aunt and uncle let us move into their basement in Portland. Life finally smoothed out for us, after that, but it was’t quick and for awhile we didn’t think we would ever make it through. At times all we had was each other’s love. I don’t know how long it will take for yours to smooth out, but I am praying for you.

Love, Gamby

 

Tuesday 19 January 2010

More from Gamby this morning/last night in an email:

Dear Stephanie,

How could I neglect the most importaant paragraph of my letter to you. I haven’t reread it but I awoke this morning realizing that I had left that out. I knew I didn’t get around to “The Great Depression”, because I had to go, but should never have sent the [email] without admitting I really didn’t suffer, although at the time I thought I did.

What I was trying to say, was I really don’t know what you and Mike are going through in the situation you are now in. I lived at a very lucky time. My folks went through the great depression, when people jumped off buildings, because they thought they simply couldn’t take it. Dad had lots of work, but no one paid him. There was no unnemployment insurance then. We were lucky, in that we had a garden and a cow, so we ate, the folks nearly lost their home (and the garden and the cow) because they couldn’t make the payments to the bank. I didn’t know the worries they had. All I know is what I heard later from other people and I personally never really felt it all. I just know enough to realize how badly you need our prayers, and how helpless I feel, because I can’t give Mike a job nor you my eyes. I am so sorry you have to go through this. Thank God for family, is all I can say at this point.

I second her thoughts. When Mike is so worried about losing the house because of his unemployment insurance running out, all I can tell him is I think we won’t lose the house and that, if we do, at least we have family to go to. A lot of people don’t have that, so we’re blessed that we have family who will take us in.

***

Haven’t heard from Dr. H (neurologist) yet, even though I called him first thing yesterday. … So we’re throwing in a “quick” visit to the ophthalmologist tomorrow … to make sure there’s no pressure or swelling on the optic disc. That will at least put my mind to rest (or not) on the vision issue. If I know the vision problems are just caused by general inflammation in my head, that will go a long way toward making me feel better, particularly if this pain in my head and back goes away on its own.

Over the past couple of days, I’ve had pain still, but it hasn’t been nearly so unbearable, somehow. I still feel it, but I can mostly function through it okay. Just a couple of spikes here and there and a Tylenol here and there is all it takes. Even went to bed WITHOUT ANY pain meds last night (even Tylenol) and slept the best I have all week. Still had to sleep in the recliner, but that was still an improvement…

 

Wednesday 20 January 2010

Well, today was a mixed bag of information. I still hadn’t heard from Dr. H or his acting nurse about my concerns, even though I called early Monday morning, so I called this morning before 9 and left another message for her, asking for a call.

Then we were off to Indianapolis for my visit with Dr. R [family doctor], who hadn’t been kept updated on any of the recent activity in my life. So my visit with him was me bringing him up to speed on our conception and everything since then. He said he has “a couple” other patients with IIH, so he knows something of the disease, but he’s not up to date on everything about it. He thinks it’s great I’m doing my research and staying informed. He thinks the iron-deficiency anemia could be related, but he’s not sure about causality with the recent headaches. He said the iron count of 13 … is good … but it is possible that I was a little low when I started getting the headache flare-ups not long after my period AND starting the exercise again. He thinks the exercise may be the culprit. …  He suggests I “bag the exercise for now,” particularly the strenuous stuff, and try to lose weight through controlling food alone right now. Then maybe I can add exercise in later. …

I really don’t like the idea of not exercising. … I do respect Dr. R and his opinions, so I’ll give it a shot, after all. He said that he thought with the exercise, I was “setting myself up for a big fat failure,” in exercising, then having pain and not exercising because of the pain, etc., even though weight is often an issue with the patients with IIH and they need to lose weight. That’s why he recommends [the] way of eating [advocated in the book Eating for Life] to most of them. He also asked what the other docs had said about conceiving and asked if I knew about the dangers of the other drugs I’m on in pregnancy. I said yes and explained [what the other doctors had said and that] I do still want to have a baby. I teared up, and looked down and started writing, so Dr. R filled in the gap by answering that he did think it was a good idea to wait 9 months to a year to get this IIH stabilized before we started thinking about conceiving. According to him, we’re “still young and healthy,” so that’s not a concern. I told him about my quest to find out more about women who’ve had pregnancies with IIH, especially after having the vision issues I’ve had, and he again said he thinks it’s great I’m keeping up on everything and that I can call anytime I have questions; if he can help, he will.

The visit with Dr. L was a little more mixed. There is no fluid on my optic nerves, so any vision issues I’ve had are not cause for more concern YET. My vision in my left eye is still 20/20, in my right eye, still 20/40. …

Dr. L is concerned that my neurologist has said he doesn’t need to see me any longer unless I feel I need to be seen. He (Dr. L) thinks the neurologist should see me at least twice a year, to keep an eye on my progress, because the optic nerve sheath fenestration has “not great permanent results,” so we really have to keep an eye on my condition. He said he would far rather see me come in 10 times a month out of paranoia than not come in that one time that it really mattered. …

I had heard and read, of course, about ONSF “failing” but had not managed to find information, so we asked him about the rate [of failure], and he said that he would estimate it at greater than 50%. He said [ONSF is] basically a band-aid. …

Of course, I’ve been kicking around the idea for a while that Dr. H is a nice guy but just doesn’t seem to know much about IIH and isn’t the best doctor to manage my care for this, so when Dr. L again expressed his concern about this lack of observation, I asked Dr. L if … he knew of any neurologists he could refer me to. He said absolutely. I said of course, the problem is that I’m self-pay. Well, that made things a lot more difficult. … So he’s down to ONE person he can refer me to. One. She has a private practice but volunteers some of her time at IU Med School. He thinks she might be able to take me on there, but it might be a long wait before she can get me in. … This doctor is a neuro-ophthalmologist, so she can monitor both the IIH and the vision issues. That’s fantastic. …

Dr. L is concerned that, of course, we will have a harder time finding quality care for me because I am a self-pay patient, as we see with the immediate reduction in the number of specialists willing to see me. He told us that he recommend I get health insurance. (Gee, thanks, Doc, we hadn’t already thought of that!) It’s a very expensive disorder I have, and it’s going to cost a lot to monitor. He suggested Medicaid; I make too much money, I explained. He said apply, reapply, and reapply again. (I will, but I don’t think it will do any good.) He suggested getting individual insurance; I already tried and weighed too much, and now I have a preexisting condition, I explained. Mike said basically, our only hope is for him to get a job that would provide insurance to me despite my preexisting condition. Dr. L said something like, “There ya go,” or “Do what you have to,” and I responded that Mike has been unemployed and looking for a job for nearly a year now, it’s not so easy.

One last thing, Dr. L said, we might consider, is disability. We MIGHT be able to get it for blindness based on my visual field limitation in my right eye. But, he said, if I ever want to drive, I couldn’t do it, because to get disability based on blindness assumes permanent blindness so I would never be able to get a driver’s license, and if I ever tried to reapply for one, the government would come looking at my history and why I was suddenly “not blind” anymore. I also pointed out that if I’m getting disability payments, I can’t earn much money. He said it might be worth it to “be healthy.” I replied that it wouldn’t be worth it if we couldn’t afford to pay for food, clothing, or shelter, so our overall health would suffer. (Besides, I’m not so sure that a lot of people on disability have access to better care than I would, just because they have more options available.) Mike and I are still pretty sure that, despite the high cost of everything, given all our options, we’re still better off with me working as much as possible and remaining uninsured (though TRYING to find insurance) and paying for things out of pocket, making payments as/if necessary than [with] any of the other options so far presented.

I’m still researching, using my contacts, the support group, every connection I can think of. I’m crossing my fingers. Dr. L even went so far as to suggest that perhaps everything I experienced was just a perfect storm with the hormone fluctuations from the miscarriage, my weight, etc., and that maybe now my body is back in its normal place and isn’t making excess CSF any longer and it’s the diamox and topomax giving me the headaches. I’m not sure I’d go that far yet, though it’s a nice thought.

And finally, on our way home from all of this, I heard back from the neurologist’s acting nurse. She said she had been waiting for a response from him to her email. He said:

-He is not aware of Topomax causing depression or anxiety but knows that anticonvulsants (which Topomax is) in general can cause them. (The information about depression and anxiety in relation to topomax was a brand-new insert with my topomax prescription starting in December, so it stands to reason that he wouldn’t necessarily know about it yet.)

-He doesn’t think stopping the iron supplement would cause the headaches but that the depressed and anxious feelings could.

-I was on the topomax to control the IIH headaches, but I may not need that anymore.

-He wants me to cut the topomax dose by half … and if that doesn’t help the anxious and depressed feelings after 4 days and I’m still concerned, I should call back, and we can try another medication.

So, of course, it is entirely possibly that it is my condition, and not the medicine, causing the depressed and anxious feelings, but I’d like to see how this goes. Perhaps I’ll notice a difference in some way, either in pain (increased or decreased) or in anxious feelings.

So, now we’re back with a clean slate. Tonight, I’ll take my medicines as I’ve been taking them. I’ll probably eliminate tomorrow night’s topomax dose. I’ll stop doing strenuous exercise, and just walk or [do other] lighter exercises. … That way, I’m back to where I was at the beginning of the month, when I was feeling so good and better, and the only change will be with the topomax.

 

Friday 22 January 2010

The past few months have been challenging for a lot of people I know, and I’ve not been ashamed to call people and ask for help, and so many people have stepped up to help me, and I have even been able to lend out my own emotional support to others. Although I’ve discovered it’s far easier being the one doing the comforting than the one receiving the comforting and have had a lot of pain and problems, I’ve also gained a lot of maturity that I had lacked, that I hadn’t even known I’d lacked.

 

Saturday 23 January 2010

I feel distant from [Mike]. Haven’t been able to sleep in bed for more than a week now, maybe close to two. When we’re awake, I’m working and he’s playing video games or doing housework. He sat down at my feet earlier while I was watching a DVD, and he wanted to snuggle, but I was distant, absorbed in the DVD. Stupid. Why couldn’t I focus on him? …

I’m distant. [My headaches and problems with strenuous activity make lovemaking more than challenging.] But who am I kidding? I’m grieving as much for our lost love life—our intimacy, our connection, not the sex—as for our baby and my sight. And part of it is because of my sight. I used to sit and stare into his eyes for what felt like hours. We’d just put our foreheads together and stare into each other’s eyes. But now if we put our heads together, I can barely see his eyes, much less stare into them.

How do I find myself, find my way back to him, and be his wife again? There have been a couple of days this week that I’ve felt almost happy—or at least … able to act the way I was when I was happy. … But still, how can I show him how much I love him? I miss him, and it’s because I won’t let myself see him. I don’t want to hurt him, so I don’t let him in. That’s what I think. But is that really what I’m doing? I don’t know.

I haven’t been able to sleep well the past couple of nights (headaches, and other pain), and it’s put me in a funk. And he’s been in a funk all week, first worried about me, then about driving, and about not receiving a callback from his interview. How can I comfort him? I can’t find comfort inside myself. I just want to run and hide and live with my parents again, hide… and be taken care of. It’s kind of like I’ve given up, sometimes.

I don’t want to. I don’t want to give up. I want to keep hoping. But Mike asked me earlier today if I wanted to learn Braille, just in case my vision got worse or went completely. Ouch. No. That would take admitting that it’s possible I’ll lose my sight enough. Ouch. Am I lying to myself? Maybe a little. But my dream is to drive again. Of course, I keep having dreams at night of driving and having it go terribly wrong. My fears, I know. And even if I do feel okay to drive at some point in the future, I don’t think Mike will trust me to. …

I’m so frustrated since seeing Dr. R. At least when I was exercising, I had a goal. Sure, I had pain, but I had a goal. I need[ed] to exercise 2 days, then rest a day, and my goal was to lose weight, to get some or most of my vision back. But now I’m supposed to lose weight by diet alone, something I’ve never done well. Hell, even with exercise before, I hadn’t done well at it, but this time [beginning in the summer before my pregnancy] it was actually working. But what do I do now? I’m not supposed to exercise? Now I’m afraid to do anything, I rethink everything, afraid to dance around the house when I’m feeling good, because it might make my heart rate rise too much.

My thoughts are everywhere. I can’t focus on one thing to try to resolve or feel bad about—or feel good about, for that matter. Since my vision went away—really, since the loss of the baby, I think, because the pain started almost immediately after that—I feel like I’ve been living behind a curtain, separated from everyone. The clouds in my vision are just the representation of it to me. I’m further away from everyone, and even more internal than I was. I think I still put on a good act, I can pretend … to be almost like I was before, but that’s really all it is. Or maybe I’ve always been this internal, but now I’m just sadder. I’d love to go to a therapist, but we don’t have the money, no insurance. I want to get on with my life, but sometimes I feel like it stopped in September.

 

28 January 2010

“To be upset over what you don’t have…is to waste what you do have.” —Ken Keyes, Jr., Handbook to Higher Consciousness

I have not proclaimed to be a Christian for several years. It’s the label I have troubles with. For years, even while calling myself a Christian, I have sought out the truth in many places. I am a seeker, apparently never content to settle. So, while professing Christian faith, I accepted the basic tenets of Christianity that are nearly universal in the world’s great religions: kindness, selflessness, love to others, self-improvement, devotion to a power greater than ourselves, and so on.

Being an avid reader and a seeker, I have learned a little bit about a lot of things—religions, myths, superstitions, spiritualities, whatever you want to call them. I have taken religious classes in religious institutions and in university; I have participated in service to the poor and dying under the auspices of Christian organizations. I was baptized as a child as a Catholic and then as a Methodist, and I was Confirmed as a Methodist. I studied Wicca and Witchcraft and dedicated myself to a coven for “a year and a day.” I have attended Catholic mass; Christian services in Methodist, Episcopal, Lutheran, Baptist, Evangelical United Church of Christ, and Unitarian Universalist churches.

I have visited places of worship and devotion for Christians (so many beautiful churches and cathedrals and chapels in Europe and the United States), Muslims, Jews, Neo-Pagans, and Native Americans. And I have been awed by them all. I have found the grace and beauty of God/Allah/The Lord and Lady/ Emmanuel/Yahweh/The Great Spirit/Akasha, Jesus, Mary, Buddha, and countless ancestors … in the beauty of nature, the smile of a child, the touch of a stranger.

Although my faith in everyday miracles and the goodness of the Great Spirit has never waned—and neither has my devotion—the expression of my faith and devotion has waned in recent years. And just like a relationship with a parent or a sibling or a very good friend, the relationship with the Divine must be nurtured to be maintained. I have always had strong instincts/intuition, but as we are so often taught to do as we become older, I learned to ignore them, to mistrust them, to only trust them if I could back them up by solid fact.

But when I was pregnant, I began to trust them again, those instincts, those feelings of a loving presence being near me. I knew, inside, that I was pregnant [in summer 2009], before I had confirmation [in the form of an at-home pregnancy kit]. Despite irregular periods and no signs yet, I knew. I knew because one day, I had the urge to practice my divination skills. …

Despite dire warnings by some people and being told that Tarot cards are the work of the Devil or, less grimly, simply hokum, or BS, I have always believed that divination … when used properly and reverently, is a way to more directly hear messages from the Divine. For me, because I can’t always bring myself to trust those feelings I have in my gut and those “voices” I hear in my head, divination has often been a way for me to cast away my doubts, open myself to the power of the Spirit, and be a conduit. And my readings—confirmed by other people—have always been spot-on, so long as I remember to let go of the doubt that I know what I’m doing and simply act as a vessel. …

As Blum states in The Healing Runes, after hearing Blum express his nervousness about how religious people would regard the Oracle, Father Bede Griffiths, a Benedictine monk whom he met with in India, “smiled sweetly and, giving the bag a shake, said: ‘Well, you might say the Runes are just another means of calling home’” (p. 125).

This is true for me, as … all the Oracles I use [are] a … way to focus my very active mind—prayer alone often gets interrupted, my mind drifts, but when I have another side of the conversation coming through clearly for me to focus on, I am more fully engaged in the conversation…rather like the difference between updating a loved one via a letter or via the phone—there’s a “laundry” list of what happened, but you never really know if any question you ask is going to get a response in your letter back, but on the phone call, it’s an immediate response…

Anyway, one day, I had the urge to practice divination. [The urge wasn’t to simply read] my old friends, the runes, which I have always excelled at. Oh no, I had the urge to consult all of them—every meditation deck, rune set, and tarot deck I [possessed]. And they all told me I was a vessel, that I was a mother. … Key [phrases] from various reads included Inner Child, Consider how it is that I bring forth new life, This is the period of gestation, The seed of the new is present in the shell of the old. And I went on about my business. Then, a few days later, I felt the urge to take a pregnancy test—not because I had missed a period or because I had any strange symptoms other than some cramps, but because I thought I should [my intuition]. And it was positive.

Not long before my miscarriage, I did a reading with my only query being “In general, tell me about my life.” It didn’t make much sense at the time, as usual when I’m reading for myself, but that’s why I wrote down the pertinent information and figured I’d come back to it. I’ve come back to it several times since October 2009, and I still cry every time I read it. This is exactly how it appears in my divination journal:

Summary

Be prepared for situations to move quickly & become intense. Burning down of old to make room for new growth. Don’t block or resist necessary changes. Let the energy flow to ultimately create a better life that is more in tune with your spiritual gifts and your purpose.

Letting go of outworn roles to reveal true identity. An opportunity to get back in touch with inner self. Courage & patience required to let go of the roles that have been smothering your inner life. Stand firm if others resist because they are used to me in certain roles. Allow the parts of true ID to emerge, and feel spirit lighten.

Survival. Signals victory over adversity. Past issues resurface because spirit knows you are now equipped to deal with them. Have the strength and courage to accept an abundant life for yourself. Owning your own power comes from accepting and creating abundance through gentle perseverance and strength of will.

[M]y faith and trust and devotion have grown stronger since the unfortunate incidents of the autumn of 2009. I now pray daily, something I can’t recall ever having done before. Ever. I now try to make sure to tell my friends and loved ones when I speak to them on the phone or in person that I love them. Before, I did this with only a select few, thinking that others knew it, or that they would think it awkward or strange for me to say it. But now I don’t care. Because I love everyone. Sometimes I forget to tell them as we’re leaving or hanging up the phone, but 90% of the time, I remember.

But I digress. I wanted to express how I came to have this faith and expression of closeness restored.

I remember as a child feeling the spirits of those I imagined were grandparents and great-grandparents watching over and protecting me. … [J]ust before my miscarriage, I felt the same. And while I was in the hospital after the miscarriage … and … for my vision loss, I felt those presences again. This time, distinctly, my two grandmothers. Very distinctly, I knew they were with me. I heard their voices [not with my ears, but inside my head, with their speech patterns and cadences], especially that of my mother’s mother, calming me, telling me my sight would be restored. That was what got me through those days in the hospital when I couldn’t see [anything] more than an inch or two away. … My grandmothers’ voices telling me to not fear, that all was good and my sight would be restored, kept me cheerful, upbeat, even through three days of uncertainty and darkness in the hospital.

I admit [that] I failed to hear the voices so clearly after we left the hospital and … I was told that, best-case, I would be reading large print for the rest of my life. Perhaps I stopped hearing the voices altogether. I was emotionally destitute. My first urge is to say that I was numb. But that’s not true, because I felt terror, desolation, fear like I had never known before, in my otherwise blessed life. I admit, through most of my life, I experienced little real pain and suffering, and believing what I do about the nature of balance in the universe, I believed this meant that I had a lot of suffering waiting for me, I was taking an “easy life” this go-round to help others more than [to] learn [for] myself, or (what I really hoped) this was to make up for a lot of [difficulty] and suffering in previous lives.

So [there] I was, experiencing the greatest fear I can ever recall, greater even than the fear of dying: the fear of living as a sightless person, as a person dependent on others for basic care. I knew, of course, that blind people survive every day, often without too much assistance from others, but what a remarkable change that would be for my life. Driving. My beloved reading, my beloved work, my beloved movies. Independence. The view out our windows. … The sadness overwhelmed me.

But over the next couple of days, as the initial shock wore off, I began to understand that I would be okay with having very limited vision so long as the darkness could be cleared away. It was the dark that scared me most [though I didn’t know why].

I don’t remember if it was when I was in the hospital or just before my eye surgery that I began my regular daily prayers. I simply know that I began giving thanks. I gave thanks for the care and attention I had received, for my friends and family (who had offered their support more graciously than I could have anticipated…), for my amazing husband, for my life, for simply being alive. Of course, I also prayed for my vision to be restored completely [and said] that I would even be OK with an incomplete restoration, though it would take a lot of getting used to and would be hard to swallow, I could do it if that’s what the Divine Plan held for me.

My insides quaked at the thought, though my spirit was at peace with the idea. Even today, months later, it’s the same reaction: spiritually, I know I can do it; viscerally, I fear I can’t, and I cower in fear at the thought of it. Spiritually, I know my vision is going to be restored completely and forever—I’m even banking on fall of 2010 for the majority of it. Mentally, I know the odds, and they are scary.

In early November 2009, I feared that my vision was getting worse, so I did another rune reading, simply asking for wisdom. … I drew Algiz, which represents Protection and Boundaries. These are the notes I made [based The Book of Runes by Ralph H. Blum and The Healing Runes by Ralph H. Blum and Susan Loughan]:

Control of emotions. During accelerated self-change, important not to collapse into your emotions, highs or lows. New opportunities and challenges are typical.

Observe & stay with the pain. Don’t try to escape it.

You will progress; knowing that is your protection.

In the Circle of runes, healthy Boundaries always bear witness to the fact that someone has courageously undertaken their journey from Denial to Honesty. Your protection lies in the Divine, in God as you understand God. Let no false boundaries separate you from the Will of Heaven.

…

I have always believed the purpose of my life is to help others. I’ve never believed that I was to help in some grand way, but in small ways, here and there, the little [ways] that may never be noticed but that we can only hope make a difference in someone’s life. … Kind of like that cheesy movie, Pay It Forward. But really, more like the Golden Rule or Jesus’ admonition that whatever we do “to the least of these” we do unto him.

[For example,] there was a country song out in the late ’90s or early 2000s that had its heart in the right place. … The basic gist of the chorus was that the person should have treated this or that stranger better, because the stranger could have been an angel. I knew the song meant well, trying to remind people to act kindly toward strangers, but it angered me every time I heard it, because [someone] shouldn’t have to think that [a] stranger could be an angel or Jesus to show basic human kindness … decency and … caring and concern to someone they meet on the street.

Throughout my life, I have repeatedly devoted myself to service of the Divine, to the Divine Plan. I’ve done this in the Dedication phase of my Christian Confirmation, during my Dedication in the Circle, and in private one-on-one conversations with the Divine on numerous occasions. Sometimes I wonder if it has been foolish of me to do so, as it demands a lot of me, and where most people would walk away, turn their backs, I feel compelled to help, even when I’d rather be doing anything but. But then I remind myself that that IS what I really want to do in life—help others, be a tool of the Divine.

Armed with my purpose in life, I’ve always thought I would be helpful in a behind-the-scenes sort of way. … In high school, I was just always the friend everyone came to when they had problems. Boy problems, girl problems, family problems, religious conflicts, sexual identity issues, you name it. I listened, I counseled when I could, and I kept secrets. This led to me being “voted” to a program called Natural Helpers. We were a group of students from across the high school … who had been identified the most by our peers as people they went to when they needed help or guidance—natural helpers. We went through a retreat a year in this group, [in which] we learned how to be even better listeners and councilors and how to recognize when a problem was just too big for us. We learned where we could refer people for various problems. [W]e were identified to the school as THE people who any student could go to for nonjudgmental help, even when they felt they could not go to their closest friends.

In this group of Natural Helpers, as in life, I was myself, with no airs, no show for others. I was mostly quiet, letting people get as near me as they were comfortable with, and I had a smile for everyone, even if I didn’t feel the need to speak. At the first retreat, … when we were just getting to know each other, … to learn [each other’s] names … I was given the name Sunny Stephanie, and it stuck for the rest of my “career” with the Natural Helpers. Even today, I remind myself of that name when I need to help others and am feeling anything but helpful or sunny.

[In my] jobs, I tried to be as kind and friendly and helpful as I could, to make the day a little better for each person I served. In fact, in all of my interactions with others, in any job I’ve ever had, that’s been my goal—to make the day a little better, a little happier, a little more cheerful, for each person I encounter. I don’t always succeed, but that’s my goal. Is that my purpose in life? Probably not, but it puts me in the right frame of mind every time I pick up the phone or begin typing an email or writing a letter. It gets me that much closer to seeing a positive goal clearly.

I went to grad school to get my master’s in health communication so I could help people. My plan was to become a patient advocate, to help normal people better understand the complex system that is healthcare and sick care and health insurance in this country. I studied how culture and religion can influence people’s desires for the type of care they receive, the type of practitioners they choose. While I was in grad school, my mother’s mother was diagnosed with terminal lung cancer, and somewhere around that time, I also became concerned with better care for those who are dying. I studied how various cultures view death and dying. I volunteered for a hospice, and I tried to help the dying and their families, in small ways—run errands for them, watch over the dying loved one so the caregiver could go home and sleep, simply be present and smile. Sometimes I was terrified of letting them down. Other times, I was serene. Most times, I sat in the room, ready to read a book or get a drink or just give a smile or comfort if the dying person awoke from the nearly constant sleep.

Once, when I walked into her room and to her bed, a woman blessed me with the most beatific smile I have ever seen, like the pure joy on the face of a baby. After that visit, I was always hesitant to visit her again. I was never really sure why. Perhaps it was because I didn’t want to fail the expectations of that smile, though I doubt she would remember me, that she had recognized me that first day. Perhaps it was because after that connection, I didn’t want to walk in one day to find her dead or her bed empty. [It] was a failing on my part, that I let that fear—more than once—keep me from visiting her room again.

Once, I helped bathe a woman who was nothing but skin and bones. She reminded me of pictures I had seen [in Dachau] of concentration camp prisoners. I sat in her room for hours that night while her daughter was at home, getting much-needed rest that the “guest beds” in hospitals really don’t allow. All through the night, I read, … while I listened as the death rattle set in. I was strangely calm. It was peaceful in that room. The family was at peace with the woman’s death, had been watching over her just to make sure she wasn’t alone when she passed. And I think the dying woman was already at peace, too.

The next night—or maybe two nights later—I showed up to find the bed empty and learned that she had passed away earlier that day. That’s the last hospice visit I remember making. I’m not sure if it was, but in my mind, it is. A peaceful passing to wrap up my very short time as a hospice volunteer. Very soon after, I got [a] job … at a pharmaceutical company.

It was perfect, I thought. Finally, I had my chance to help people and use my English and health communication degrees to do it. I’m not certain how many people I was able to help, directly or indirectly, through my work at the pharma company, but I learned a lot that, as it turns out, has helped me immensely—and probably more than I can ever realize—in the past few months through these struggles. So I guess I’m still working toward my purpose in life.

Now, I’m writing a book. I woke up from a dead sleep not long after my eye surgery, still in a lot of emotional turmoil, and decided that I was going to write a book about [my vision loss and eye surgery]. I awoke with the first few paragraphs fully written in my head. I had vague ideas of this book helping me heal and also helping me help people. I’m still not certain as I write this how I can help people with the book, and I’m not writing the book TO help other people. It’s not a self-help guide. It’s not an Everyman’s guide to understanding healthcare. It’s not a tale of miraculous physical recovery. … Instead, I’m writing the book for myself and hoping that somehow, it will help others, too.

And finally, we come to the whole reason I started writing [today]. Over the past few days, crazy thoughts about making a bargain with God for restoration of my sight have popped up occasionally, about me promising to become a Christian again if my sight would come back. I’ve rejected this idea for several reasons, not the least of which being that people always like to promise or swear to God that if He (I’m following the Judeo-Christian use of the male pronoun here. In my mind, God is not limited to gender, or, rather, is every gender, all wrapped up in one.) will help them/save them, they will always [do what they know they should be doing, or not do what they should not be doing]. The problem I have with this issue is that I know that it would be an empty promise. I could go back to going to a Christian church and professing to follow this or that church’s doctrine over another, but it would be false. I believe in the might of God, even the special holiness of Jesus, but I don’t believe that belief in Jesus as my savior is the key to my salvation.

So today when I prayed, I talked this issue over with God. An attempt at bargaining would cheapen us both, I think, like a hooker and a john haggling over the price … or a junkie and a dealer discussing the cost of this week’s premium salvation. But I vowed, yet again, to be an instrument of the Divine Will, to sing the praises of “the Lord” (Allah, Akasha, God, Goddess, Yahweh, etc.) to whomever needs to hear these praises. I promised God to do this, whether or not my sight is completely restored (but whispered in my heart, “But please, Great Spirit, restore my vision!”), and asked for help and strength whenever my strength and faith might begin to fail. In my fervor of prayer, I envisioned myself as a lighthouse, guiding others safely through dangerous waters to safety (whatever that may be for them) so God may lead them where they need to go.

When I finished my prayer, I felt compelled to draw from the Spirit of the Wheel Meditation Deck. I drew card #18, Big Winds Moon. Below are my notes from this booklet:

Leadership
Self-discipline
Psychic abilities

Intuitions are very much in tune with my higher self. Allow the [connection] to help me on my path. Stop self-sabotaging. I am lacking in self-discipline.

Spirit is asking me to share the bounty of my life….learn to flow with the spiritual energies around me. Take my place of power.

Learn to trust in the greater plan. Creator would not ask me to develop and share my gifts if I were not ready. Have faith in myself.

“Prayer: I am ready, Spirit, to share the bounty of my life with others. I call upon the energies of the Big Wind Moon for the courage to be a leader and to use my abilities wisely for the good of the whole.”

With my decision to be a lighthouse, a shining beacon, and the message provided by that card, I decided to start a new blog, one with a focus on religious and spiritual learning. And that’s what I started typing here, an introduction to that new blog, but as I typed, a larger story emerged, one far more fitting to the book that I started and have fallen behind on. Perhaps there will be a blog someday, but this is my call (perhaps one of many calls) to keep working on this book and get it out there for people. I’ve got to “let my little light shine.”

 

Note

[1] Christina Caskey, When Something’s Wrong: How to Navigate the World of Health Care. Indianapolis, IN: Dog Ear Publishing, 2011.

***

Thank you for allowing me to share this part of my journey with you. Please let me know what you think so far and if you want to hear/read more of my story.

If this is the first chapter of my story that you’ve read or listened to, you can catch up by listening to all of the episodes on my YouTube playlist, starting here.

 

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