A Long Overdue Lesson Learned

At the end of yesterday and in the beginning of this day, I had more than a little ironic anger going on. The kind that says, "It figures, why don't You just kill me and get it over with?" And no, that capital "Y" was no accident. Who gets the brunt for all of that kind of anger and sense of injustice but the Creator himself?

This afternoon I was listening to the song: Healer, sung by Kari Jobe (you'll find a video of it at the bottom of the page.)

Healer Lyrics

Verse:
You hold my every moment
You calm my raging seas
You walk with me through fire
And heal all my disease

I trust in You
I trust in You

I believe You're my Healer
I believe You are all I need
I believe You're my Portion
I believe You're more than enough for me
Jesus You're all I need

Nothing is impossible for You
Nothing is impossible for You
Nothing is impossible for You
You hold my world in Your hands

Every word to this song moves me and instructs me. And what I learned from it today is this: In whatever condition I may be - whether in sadness or joy; pain or none; struggling for breath or breathing easily--I HAVE ALL I NEED! He is more than enough for me. He is not taking from me my body and my freedom; He is making room in my life to give me more of Himself! What kind of an idiot would complain about such a thing? (Idiot # 1 sheepishly raises her hand)

So I have learned something valuable today and whether or not The Healer chooses to heal my body; I AM HEALED of this bitterness that has held me for a long time; the sense of injustice I've nourished, despite overt words of faith.

This can only be a cause to rejoice. The following verses came to my mind and I will end with these:

Always be full of joy in the Lord. I say it again—rejoice! ... Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.

Not that I was ever in need, for I have learned how to be content with whatever I have. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everything through Christ, who gives me strength.

Another Bump in the Road

This past week I had two MRIs done on my spine. One on my cervical (neck) area and one on my lumbar (lower back). Yesterday I sat in my rheumatologist's office as she discussed the results with me. My "rheumy" is a fairly young woman, younger than myself, and no one has yet told her not to cry in front of your patients when you have to tell them horrific news. But still, I was so appreciative of her compassion.

I won't discuss all the medical details of it. But the upshot is that at EVERY single vertebrae and disk in my spine, there is severe damage being done by both spinal degeneration and the Psoriatic Arthritis. It is to the degree that surgery can only alleviate some of the symptoms, but will not be able to make a substantial difference. And from what I could gather, my time of mobility and sensation in my arms and legs, is quickly coming to an end. I already am experiencing frequent numbness and pain in my limbs...sometimes temporary and complete paralysis of both legs or both arms at once. And I am guessing this will soon be the rule instead of the exception. Now if this were to also mean that I could be numb to the pain or the destruction of my spine and the impingement and pressure on my nerves, then that would not be completely bad. But the bad news is that the pain; which is even now debilitating and severe, will become even more so.

The final irony is that my latest medication for pain that I've taken, which had offered me a peek back into a life with tolerable levels of discomfort--had been robbing me of sleep. And after 8 days of sleeplessness, I finally went without the meds for a day and a night...and my theory proved true as I slept deeply for six hours until awakened by pain. So I will trade freedom and independence for sleep. And ironically, the renewed levels of pain will very soon rob me of almost all sleep as they had been doing for at least a year or two prior to going on this medicine. However, because I can survive on two or three hours of sleep, and cannot survive on none. I will trade in my newly gained "life" for those paltry hours of sleep...and enter once more into a land without respite.

Most people would at this point put God onto the stand and demand from him some answers as to why. But I cannot and won't do this. I know full well and understand completely that, as Job learned in the Old Testament, it is not up to mankind to ask God a single "Why" or give him a "how dare you??" He is God -and frankly - I'm not. I understand and accept that completely. And I do trust completely that He has some purpose, unseen and unknown to me which will result in blessing and reward...but also that I may catch no glimpse of that in this world. And I am content with that as well. I trust him that much. I am not saying this to put myself on a pedestal and to tell you how wonderful a Christian I am. (And doubtless, some of you are at this point considering what an idiot I am!) I am not without flaw.

My flaw is probably more along the lines of a lack of acceptance...and some inclination to whine about it all! And I hate that second fact about myself with a passion...but still I catch myself doing it. Last night, I finally had to come to the point where I just told myself to stop looking for any comfort whatsoever from people....because it will simply not be there. My family can only see the inconvenience this will mean to them. My friends, shake their heads and say, "What next? and What else?" And most people just don't have any ability to imagine or relate to the kind of pain that I deal with every moment of every day nor the ability to conceive of paralysis and worse. And frankly don't care to. Rather than letting this anger me; I have to seek my comfort from the hands of God alone...and trust him to provide me with strength and encouragement also...because it is so sparse and infrequent and insufficient from mankind, even if they ARE willing to offer it.

I've recently lost a large amount of weight and begun to develop some muscle tone and a good bit of functional strength. And now my doctor suggested to me yesterday that I should ease up on my working out because it is very dangerous with the precarious positioning of my of disc matter and the pressure from vertebrae and bony deposits on my nerve roots. One wrong move and paralysis can be quick and immediate. This at first gave me a great sadness and sense of loss. But I am wondering if this too, is the type of advice that my pulmonologist gave me last May as he told me that exercise would always be impossible for me as it would place too great of a demand on my lungs. I determined then and there to prove him wrong...and I certainly have done that. Why should it not be that movement such as yoga and stretching could not INCREASE the space my nerve roots have to "breathe" and also reduce pain and pressure in my spine?? To my thinking, that is an equal or greater possibility...and it is probably the one that I will act upon.

I have seen the limitations and insufficiency of conventional pain management. And I am now going to seek it from unconventional sources. I have nothing to lose. And I've given conventional medicine a fair shot and a good try...and it has failed me. Now I will look into herbal compounds,and possibly acupuncture and such to help me to endure.

I will confess that my first response was to want to curl up and just die quickly. But I must fight. I must trust my Lord Healer. And I must trust my own instincts and my own common sense...even above that of my doctors. And I will to my Lord, "I am nothing--how could I ever find the answers? I will cover my mouth with my hand. I have said too much already. I have nothing more to say." (Job 40:4,5) I cannot pretend to know what is around the corner--even if the doctors think THEY know. God is bigger than they and bigger than a degenerating spine. And he is able to heal and forestall and prolong...and even to bless me in the MIDST of all of this suffering. And I must trust that he will do just that...as well as to give me the strength and faith to get up to face yet another day each morning. And certainly he is good enough to hold out to me the promise of Heaven and a new body altogether. I must fix my sights on these things and refuse to look at the things which doctors say are likely.

So I will face tomorrow with the strength and faith that he gives me for that day...and not look at the days coming...I will ask him for my "daily bread" and nothing more. And I know that my God is a good Father who knows how to give good gifts to his children who ask for them (Mt.7:7-11) and certainly I am included in this promise.

The Master has Spoken

I woke at 2:00, and after I got done tripping and falling down the stairs....I could not sleep. And began to think and to try to pray, but found, as has been the case lately, that praying is exceedingly difficult. Seems like I'm trying to make myself heard through a ten foot thick concrete encasement in which I'm trapped.

But God began, instead to talk to me. I cannot go into all of what he told me, if you are in the Lord, you will probably understand what he told me...Some of it, I wrote down in an online journal, the rest is just in my heart. ... If you are not one of the Master's children, doubtless all of this will seem like nonsense to you and you will attribute it to my "precarious mental state"...and that's okay. You can think that. The truth is that God opened my eyes to the fact of my entrapment in that concrete jail. My difficulty in prayer and the image I had of being imprisoned were not only metaphorical but literal. The prison is that of pride, religiousity, and judgmentalism, among other lovely qualities. Qualities from hell, that is. The enemy had taken me captive and then enticed me to weave my own prison bars from such characteristics as these...And that prison kept me from true worship. It kept me from any power and consistency in prayer such as I used to have. It kept me from loving others with a non-critical heart. It kept me from real connection to other believers...and since I also did not fit in with unbelievers because even in my prison, I am a child of the King...well I was quite isolated and lonely.

And now that the Master has opened my eyes, and opened the gates of my jailcell, and once more opened my ears to his voice....
well...things will be different.

A New Era

I've been out of the psychiatric hospital for exactly one year now...And for the past, probably 6 months, have been very stable and high functioning. I have been now focusing on losing the weight that the psych and asthma medications helped me to gain and so far have lost 50 pounds. I also have been struggling with my physical well-being...attempting to exercise daily and get some muscle definition and increase my stamina...as well as to augment my respiratory health. I'm having some success in that area as well...now being able to do things physically which, even three months ago, were impossible for me.

A real stumbling block has been my level of pain...this usually being way out of control to the degree that it made activity of any kind, almost impossible. However, several months ago, I visited a new pain management doctor who has experimented with different methods of treating the pain, and we have hit upon a combination which is pretty effective; more effective than anything else has been, at any rate. I still have pain all the time; and it is still sometimes severe....but it is several points lower generally on the "1-10" pain scale...so to me; this is heaven.

This decrease in pain has also led to an increase in activity and in physical participation in Life. All of these factors combined have gotten me to a point, not of normalcy, but of functioning in a passable way. I still don't think I could work for even five hours a day...I still have to take frequent "lie-downs" as my friend from Scotland says, to get the pain level back under control once more. But to even be able to CONSIDER mopping a kitchen floor or running the vacuum; or going shopping without a scooter or wheelchair...is an amazing improvement. And to be able to carry on conversations with my family without them rolling their eyes at each other is a nice bonus as well.

I'm really not sure how to process these changes. While part of me is THRILLED to be able to walk for a couple of miles and to not have voices shrieking at me contantly; part of me is a bit thrown by the whole thing. People still do not regard me as "normal" mentally (which I guess is to be expected as Schizophrenia is not something that will go away), but I do see those who know me the best beginning to lengthen my leash and to trust me with small responsibilities. My worst handicap at this point, honestly, is my short term memory loss...which is the conseqence of both the illness and the ECT and medications which were used to treat it. I am learning some new "tricks" to help me recall things or to at least be reminded of them so that I carry them out as I'm supposed to. But there are still many times in a day when my lack of recollection will cause some kind of a problem.

For a person who has been really really ill for as long as I have, to suddenly have a span of relatively good health, is both an amazing blessing...and also a terrifying occurence. I'm honestly not sure how to relate to even myself now...and I know that other people are in a similar cautious situation around me. My husband is the most pessimistic of all...openly awaiting the next illness or hospitalization and afraid to give me an ounce of his emotional commitment because he's too afraid of losing me again. I guess this reluctance is understandable...sort of...not that I agree with it, certainly...but I understand that that is how he deals with it.

I'm caught in a crux between a new determination to stay well...and the same pessimistic outlook of waiting for the next shoe to drop. I have utilized every conceivable weapon against illness that I can come up with...and so far it has worked. There have been three occasions when I KNEW I was sick...coming down with a respiratory illness....and have used my knowledge of herbalogy, nasal lavaging, drinking hot liquids and continuing to exercise despite increased shortness of breath. And each of the three times, the illness backed off after only one or two days of feeling the symptoms of onset. For me, this is a huge miracle. I have the asthma, a congenital immune deficiency plus Psoriatic Arthritis and I take Methotrexate which destroys the immune system ...I'm at a huge risk for sickness...and yet, somehow, with God's help and blessing, I've fought off illnesses when all around me were sick.

Mentally, I'm not used to a brain that functions halfways normally either. And I'm so used to being told that I'm NOT being logical, when I could swear that I am, that I really am having trouble trusting myself...my own rationales, and my own judgment. I find the whole world, as a relatively healthy person, to be quite frightening. Along with wellness come all kinds of responsiblities and possiblities and also, my situation nonetheless makes many possiblities still impossible or illadvised. And I am having LOTs of trouble sorting out the difference between the two. I don't dare ask my family for their help in discerning this, because after ten years of sickness, they are more than a little pessimistic and distrustful of everything I say and do. So where do I go for this? ARe my own judgments reliable? Is there such a thing as being TOO ambitious and optimistic?

Autumn Paradoxes

I love the autumn...everything from the gloomy damp chilly days that
smell like snow and fallen leaves, to the smell of spiced cider and
apple butter cooking in the slow cooker.
I love shopping on crisp days when the sky is eternally blue and forms a backdrop for the
colorful hillsides.
I love making and freezing pumpkin puree for the year to come.
I hate the fact that this year, try as I might, I
couldn't cut the pumpkin enough to bake it - because my hands are so
crippled with arthritis - and I had to throw it out.

I love reading about new fall recipes and ideas for the BIG dinner to come.
I hate that we have no BIG dinner coming.
I hate that we have no family to laugh, argue, and gather with.
I love/hate the fact that the three of us go out to a sushi restaurant and eat a lot of sushi and then go and see a movie - and that is our lonely, private celebration.
I hate the fact that two years ago my father in law died...and we got
the word as we were on the road going to the said sushi restaurant on Thanksgiving Day.
I love to take out my fall decorations from the box in my closet downstairs to try to make my house look festive for a holiday that won't come.
I hate the fact that every year, I end up in the hospital and too sick to remove the decorations and they often stay up until April.
I hate the fact that Eric tells me not to bother with them because I won't be there to put them away.....................
.......................and I hate the fact that he is usually right.

Autumn is a time of conflicting emotions; has always been for me.
A time of joy and anticipation and deep sorrow and disillusionment.
But then most families are pretty full of all of these things as well.
So fall is a time to be with family to enjoy the marvelous, put up with the bad and cry with the sad...But it all is still good.

Mind over Body

I was just talking to my daughter who is in the midst of her struggle with an eating disorder. As I listened to her (false) perception of herself and her body, I had an eerie sense of deja vu. I felt that way also many moons ago. The same words spouted from my mouth as just came from hers...minus the tears. Tears were not in my emotional vocabulary then...and are extremely rare now. I hated myself. I hated my body. I hated pretty much everything about me. And as I listened to my daughter...I had the oddest feeling.

It was a realization.
I don 't feel that way any more. It's true that I still suffer from a distorted perception of my body that comes with an eating disorder...especially when you had it for over 20 years as I did. What I see in the mirror doesn't jive with what other people see when they look at me. (At least I hope it doesn't ! ) But the emotion of hatred is gone from the sight. It's not that I ACCEPT it; I'm working to change it. But I no longer call myself the negative things I used to call myself (Fat slob, cow, etc etc) And I used to tell myself these things -- and fully believed they were true--when I weighed 85 pounds. Now, as I work to gain a healthy body, I am doing it in a wise and healthy manner....eating many, many more calories in a day than I would have ever considered eating before.

And I found myself wondering this afternoon, what changed? When did it change? What caused it? And I really don't know. But I think it was my desire to have a baby and to be healthy so that baby could be healthy. So when I got married, with this view in mind, of one day giving birth to a little bundle of wonder...I began to eat more normally. I don't know why THAT desire was more powerful to me than say, staying out of the hospital (which I hated), or being strong and healthy enough to pursue a normal life. Both of those were things I wanted...but they did not carry the "weight" (sorry for the pun) of my desire to be a mother. Because THAT desire involved two other human beings; my husband and that tiny miracle who depended on my and needed me to be strong.

So, not only did my eating disorder begin to resolve itself... but my mental illness also took a back seat. It is possible that there was some hormonal change in the fact of being pregnant that caused me to improve, but I think really, it was just that I knew that this child needed a sane mother...so I put all of my mental energy - my psychic energy, as my psychiatrist puts it- into becoming well and normal for my new daughter. I have a terrifically strong will. A psychiatrist at Columbia Presbyterian Hospital told me that I have the most powerful mind of anyone she has ever met. And I don't think she was really talking about intelligence. I just have a very strong ability to channel my mental and physical energy and all of my effort into making my body do what I want it to do for me.

Now that ability has led me into some very bizarre and dark places...which I won't go into here...but it allowed me to be well for close to 15 years. I still struggled with paranoia at times and with a HUGE amount of fear and anxiety...but I pretty well covered those up and hid them from everyone. It has allowed me also to lose enormous amounts of weight with very little effort. It has made me sick and it has made me well.

So, my daughter gave me the impetus to make myself well (and of course the grace of God and the prayers of many who knew me also played a big role in all of this)...Now I wonder; will I be able to help my daughter make herself well of the same disease? I think I will need a lot of God's help with this one.

The Will to Change

I deeply apologize for my silence over the last 11 days. And the worst part is that I don't even really have an excuse. Well, I do -- sort of. I've been really focused on my involvement in SparkPeople.com. That is the site I told you about quite a while ago which is dedicated to helping and supporting people in their efforts to live healthy lives in thinner, stronger bodies.

I had gained 80 pounds since last fall largely from medications and being immobile. I was also weakened by the same two reasons. And I decided--about in May, I would say--that enough was enough and I just wasn't going to take it lying down anymore. So I became more empowered ...in every sense of the word. My pulmonologist responded to my question as to what kind of exercise I could expect to be able to do with the following words of doom: "You will not be able to ANYTHING EVER. Your lungs cannot tolerate any more stress on them besides just breathing while at rest."

Well. I never was a kid who listened to the words, "NO" or " You can't"! I've always been one to rise to a challenge...and if that involved a little rebellion, then that was all the better! So I decided as they wheeled my wheelchair to the door of the hospital the day of my discharge from my last asthma hospitalization, that I'M THROUGH WITH BEING SICK!!! It's been a solid ten years since I got asthma and since my health went down the tubes..and that's quite enough time of one's life to spend wasting away...and wasting time.

So, I found Spark. And I lost 50 pounds. And now, I have MUSCLES...and you can even SEE them! And I can do Jillian Michaels 30 Day Shed; and I can walk for miles up and down steep hills; and do the three mile workout on Leslie Sansone's DVD. Take THAT, Dr. D!! I've been eating really, really healthfully; I've made numerous friends online, some of whom, I've talked to on the phone...

So between blogging on Spark People's site; exercising and tracking food, talking on forums, and actually interacting with my family...there has been little time for introspection so I've felt like I had little to say here. But I think I DO have an important message to bring you. In fact, several.

1. When a doctor tells you to do something that is contrary to what you know is healthy for people in general...think really really carefully before you do it! My doc told me not to exercise. Another told me don't drink more than 18 oz of liquid in a day. Both of those things completely contradict natural medicine and just plain common sense. Now, I know, those are the traditional medicine's answers to two of my health problems...and disobeying must be done with care and common sense and lots of caution...But I did that....and all of the problems those dictates were designed to address have improved greatly in the past months since I've taken matters into my own hands.

I also, back then, decided that I was tired of being a fat zombie who had no ambition to shower or change her clothes and I redesigned my medication regime, based on the information I had and based on experience and lots of personal research and also talking to people. I went on meds that I knew had a tendency to make some people lose weight. I went on meds that made some people hyper...and I went back on a psychotropic that I'd taken years ago with success and from which I had few side effects. All this was met with panic from my husband and cautionary words from my doctors...but you know what? It WORKED. The meds have addressed my negative symptoms and do not have me leveled by the side effects...I have energy and motivation....

The only fly in the ointment was pain. As you know, if you've been following here, I have severe constant pain. So I decided to address that too. I began to go to a pain management doctor and we tried med after med...with no good results. Until finally at my last visit a month ago, he put me on one that has actually helped. Plus the Methotrexate via injection has also made a big difference with my PsA pain....so although I'm far from being pain free, I'm closer to it than I have been in as long as I can remember. And I honestly believe that, contrary to what one would think, the exercise has helped in this area also.


And the other thing relevent to this blog's purpose which I would like to tell you is:

• You don't have to sit back and give up on life just because you have a mental or physical illness. Even if the doctors have TOLD you that it's hopeless and given up on you themselves: God is able to do anything. And you are able to do a LOT if you put your mind to it and decide that you're not going to take it lying down. I'm not recommending that you flush all your meds down the toilet , by the way. You need to work with your doctors, and make use of medical knowledge...Of course, sometimes, you can decide not to follow their advice, but you must still take your meds if you have schizophrenia. I still take my nebulizer and puffers for my asthma. And I still take all my psych meds...but I insisted that I have some say in which ones I was put on...and I based that on research of my own. Some things are just necessary and it would be stupid to toss them out. But use discretion, pray about your decsions...seek God's guidance and wisdom....Use common sense

And above all:

• You have to WANT to be well. You have to decide deep in your soul that you are determined to put away the whole persona of an ill person..and strive as much as possible to be well. And if you would; accept this advice and then go to www.SparkPeople.com even if you are not overweight, the things they recommend and the lifestyle they promote is good for EVERYONE....Read "The Spark" by Chris Downie...the founder of Spark...even if you just read the intro and the first chapter where he tells his own story of how he overcame poverty and exreme social phobia and anxiety to become a multi billionaire, to speak in front of thousands of people and to feel comfortable doing it...all because he decided in his heart that he wanted to change and that he would not accept those conditions. Any one can do the same. I'm not promising that you'll be a billionaire, but you can overcome great obstacles if you decide that you really really want to and are willing to work hard in order to obtain a new way of life.

I've still got schizophrenia...but I'm doing amazingly well. I do not even tell some new people that I meet about my illness...although I do invite them to my blog here. I'm not hiding it...but it is no longer my identity. I'm not a schizophrenic named Cynthia. I'm Cynthia, and I happen to have schizophrenia.