9.4.11
25.3.11
Tangled-up puppet
It has been awhile since I've written. I suppose I have lost a bit of steam with this blog; however, I suppose that it should be expected that some time has gone by since I've last written, as I have taken a hiatus before.
I am at a loss for words... there is so much I wish to say about how much better I feel since I am not longer eating crap (gluten, processed foods, franken-oils [such as corn and canola], soy, refined sugars...) and since I've quit smoking (over 3 months ago). That I am able to, at least on some days, hike a VERY tough 7 miles (barefoot, of course) and work out my frustrations with the world, or at least worldly ways, through sweating and the burn of my muscles that will hurt like hell for the next week. Not that I'm back to 100%, mind you, but I am not looking at different wheelchair options to see which ones will work best for me (although that is probably still going to be needed... eventually, but I hope to be able to delay it longer). This past fall, I tried a very easy and level half-mile walk, and I was not able to make it half-way, because I could not create enough energy to make it, because I hurt so much that I nearly threw up from the pain, because I was putting Rice Crispies to shame, with all of my "snap, crackle, pop" going on in my joints.
And I am SSSSOOOOOOOOOOOOO grateful that I have some hope of not dying of starvation (which with how I react to even small amounts of gluten, there was NO way I was digesting any of my food when I was eating a large amount)... but, with a renewing health comes struggles and temptations and weaknesses that I have not had to face... at least in the past couple of years, when my health started declining in the first place. One is too much self-reliance and self-ego. I don't feel so weak, and therefore it is SO easy for me to forget Who it is that sustains me, and without Whom I am NOTHING. So many disordered passions have been cropping up STRONG, and I feel as if I am literally at war with the powers of evil. Or, perhaps it is only my false sense of self, that does not even exist. I don't know, nor do I particularly care... Lord Jesus Christ, Son of God, have mercy on me, a sinner.
Prayers are appreciated!!!
2.2.11
Ch-ch-changes
I quit smoking. 2 months ago, actually. I can't get over the fact just how much better I feel, and how tight and horrible that smoking actually made my lungs feel. I suppose that until I gave it up I couldn't see how sick it was making me.
I'm now gluten-free. I have osteoporosis, very low levels of vitamins (especially B3 (niacin) and D), and I'm sure many of my symptoms are worsened by eating gluten. Perhaps I may or may not have celiac (although I had a weak positive on some of the blood work), but I do know that gluten makes me sick. I have not eaten any (as far as I know) in almost 2 weeks, and I can't get over just how much less nausea and stomach pain I've had. I've even had times where I've not had acid-reflux (a major thing for me!). I'm glad that I'm going gluten-free, as it is forcing me to make much of my own food from scratch, and to be more conscious about what goes in my body. Because many processed foods have gluten in them, I have pretty much eliminated everything unless I know FOR SURE it's safe (such as the newly-reformulated Progresso soups). I'm focusing on fruits and vegetables as my main source of food. Because I'm already feeling so much better, and I know that it takes months for the full results to be seen, I'm hopeful that I'll be feeling much better the longer I avoid gluten.
24.1.11
Fighting against the cure (or what's the point?)
In the history of ribbon-wearing, awareness raising campaigns for diseases, how many have been cured? How many have even brought forth one or two new drugs (completely new drugs, not just another one of a similar chemical property to those already out on the market, and thus have a similar effectiveness and side-effect profile)? How many cases have been prevented? Even the most active cancer advocacy groups harp only on early detection. Early detection does ensure a better survival rate from certain diseases, but that doesn't change the fact that even in the earliest stages, someone has it.
What really gets to me is these groups that are sponsored by products that actually causes the disorder in the first place. I will not even get started on Susan G. Komen and their partnership with Planned Parenthood (the biggest abortion provider in the US, if not the world... abortion is one of the biggest risk factors of developing breast cancer). KFC selling pink buckets nearly made me laugh until I cried with hysteria. High fat diets cause their own problems, and fried chicken isn't fat free, is it?
Too much advocacy makes for a higher overhead. In advocacy groups, salaries, utilities, office supplies, and many other day to day operating costs must be paid. This is less money that is given to research groups, who can study disease processes, who can perhaps find a way to arrest a certain disease.
Ultimately, wearing a ribbon is like "clicking for a cure". Sure, it makes one feel good, perhaps others might be educated about debilitating and possibly life-threatening diseases, but in the long run, what is the result? Isn't it best served, in not just having a "special" time for advocacy, but in making one new person aware every day?
I suppose there is some use for them. Especially support groups for those who are affected by certain illnesses can prove invaluable. Who better to learn how to live with an illness than others who are affected, and have been so for some time? Who better to reach out for support in dealing with family members?
20.1.11
PAIN!!!!
Walking silently today has been nearly impossible and completely terrible. With each step, my ankles slid out of place just enough to slam back in place, causing them to pop. With each step, I sounded more and more like a bowl of Rice Crispies. As you can imagine, this is not the most *ahem* comfortable of sensations.
I have had several days of just horrid symptoms... my neck is spasming, and I have the nice occipital headache. I have burning, numbness, and tingling in my upper back, from my shoulders to below my scapulae, although today, it has spread to around t-12. There are many, many other symptoms (cardiac and neurological mostly), that I'm going through... that I just don't really care to inventory, as I am making an effort to not focus so much on what all is going on individually. I am to a point where I just don't want to know if anything else is wrong with me...
Not that I'm giving up. I am eating healthier, making sure to get as many needed nutrients through food. I am also supplementing with various minerals (magnesium and potassium especially). I don't have a specific exercise regimen, but I do try to walk at least 20 minutes a day, even if I have to break it up in time chunks (like 20 times a day, one minute a piece). I am working on building muscles to help better keep my joints in place (I hope).
It is difficult, oh so difficult, to not completely buckle under all of this. If it weren't for the grace of God, I would have already. I know that I am not the one that is holding myself up... I simply don't have the strength. It is through love of Him that I am able to endure this, and even at times find peace and joy in all of my ailments. I am blessed to be given many opportunities to learn patience, perseverance, humility, and so many encounters with grace through my illnesses. When I have days where I cannot drink enough water, I think of our Lord's words, "I thirst". When I have days that I cannot get out of bed, I am thankful that God has seen fit for me to be able to give my whole day, my whole focus, all of my love to Him in prayer, my mind in learning the words the Fathers in the Faith that were handed down two millennia ago. I am so, so blessed to have such a firsthand knowledge of my own weakness and my own need of God and His mercy. If I were healthy, if I had a body that functioned as it should, I am certain that I would not find salvation. I would not think of God nearly as much, and I would certainly be bold enough to proclaim that I had NO need of Him.
O lord Jesus, Physician of souls and bodies, may Thy presence ever be with me to hallow and bless this my sickness to Thy praise and glory, and to the salvation of my soul. Forgive me all my many sins and want of love for Thee. May I ever fix my thoughts upon Thy great sufferings upon the Cross, that I may learn from Thee courage and patience, humility and love; and above all, true submission to the Father's will, that, being restored to health in Thine own good time I may show forth Thy praise by giving up myself to Thy service. And grant that when this life is ended, I may be found worthy through my merits to inherit eternal life. Amen.
10.1.11
28 questions about my invisible illness
I actually did this last year, but since it's been such an eventful year, with a few new diagnoses and other changes, I thought I would make it better fit with where I am now.
1. The illness(es) I live with is/are: Classical Ehlers-danlos syndrome, Postural Orthostatic Tachycardia Syndrome, osteoporosis, borderline chiari, Barrett's esophagus, and a whole host of other supporting cast... too many things, and I'm not sure if I want to know more right now. I need a break!
2. I was diagnosed with it in the year: The POTS was diagnosed a year ago. The CEDS was diagnosed November 8, 2010 and everything else in between there somewhere.
3. But I had symptoms since: my whole life. I remember not wanting to run in kindergarten because my ankles were already subluxing and dislocating then.
4. The biggest adjustment I’ve had to make is: learning that the true worth of a person isn't how much they can give and do, but how much they can love.
6. The hardest part about mornings are: standing up. Heart-rate and dislocations are at their worst in the morning (most days... sometimes it's only downhill from there).
7. My favorite medical TV show is: House, probably, though it's difficult to watch others with these rare, but most curable diseases, being diagnosed and cured within an hour, espeically since it's taken me several years to be diagnosed correctly.
8. A gadget I couldn’t live without is: 1. My handicap placard. 2. My computer, as being able to connect with others who have similar issues to deal with is helpful. 3. My Kindle. Seriously, every book-worm spoonie should invest in a Kindle, as the free books I've downloaded thus far have more than paid for the cost. It's great to have when waiting for doctor's appointments (I've done a great deal of my reading in waiting rooms), and my hands don't hurt nearly as much holding that as it is holding a 300+ page book.
9. The hardest part about nights are: the insomnia, because I hurt too much to sleep or my ANS is really cranky and wants company.
10. Each day I take: tons of water and salt. Runner's gel and electrolyte tabs are great for dehydration.
11. Regarding alternative treatments I: can't do acupuncture, as it makes my pulse and bp do strange things for a few days afterwards. I do massage therapy, and am slowly changing and learning about optimal nutrition (getting enough magnesium in my diet for the osteo and muscle spasms, for example)
12. If I had to choose between an invisible illness or visible I would choose: His will be done. I do not care... suffering is suffering. That which is not to the detriment of my soul.
13. Regarding working and career: I wish... I am in school right now, still working towards a music degree (at least a certification). I want to be an organ choirmaster, but I would be happy even filling in for other's vacations and such.
14. People would be surprised to know: how much I view my illness as a blessing. To quote St. Paul in his second letter to the Church in Corinth: "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." As a Christian, I am to worship God with all of my heart, mind, soul and body... I am reminded of the story of the widow and the two mites.
15. The hardest thing to accept about my new reality has been: well, it's not so much of a new reality, as my whole life has been like this. The only new about it is that I'm not being called a hypochondriac by the medical profession anymore, and I have a letter on official stationary that says that I have these things. Yes, I have been fighting my whole life to have someone believe me, and now that I do... it's difficult to know what to do with that.
16. Something I never thought I could do with my illness that I did was: Drive 18 hours in a 3 day period... exhausted doesn't cover how tired I was afterwards.
17. The commercials about my illness: I'm not special enough to have commercials about my illness. Not enough people have it (or it is terribly under-diagnosed, which is my supposition) to warrant the advertising costs.
18. Something I really miss doing since I was diagnosed is: Nothing in specific... As my symptoms get worse, I have to modify my behavior even more, but I've been doing that my whole life.
19. It was really hard to have to give up: smoking... but so much easier than I thought it would be. And I'm SOOO glad to be an ex-smoker!
20. A new hobby I have taken up since my diagnosis is: blogging and reading many patristic writings in the wee hours of the morning.
21. If I could have one day of feeling normal again I would: do not much different... maybe with more energy, and with less crashing in between, but I make sacrifices now to do the things I love the most here on earth (playing organ and singing are surprisingly rough on an EDS/POTS body).
22. My illness has taught me: humility, patience, a greater understanding of the suffering of others maybe not exactly as they understand it... but I've learned that suffering is suffering, and that through love, it becomes more than suffering.
23. Want to know a secret? One thing people say that really bothers me is: "Are you feeling better?"
24. But I love it when people: randomly surprise me with their knowledge. A few months ago, I was in the grocery store, using the in-store cart and my neck brace. When I was parking the cart, heading back out to my car, someone asked me what happened, and if they could help me. I mentioned I had a collagen deficiency, and the gentleman mentioned Ehlers-danlos syndrome and he had learned about it in dental school... this is just one of a few encounters I've had since I've been diagnosed, and I try to clear up misconceptions at each encounter.
25. My favorite motto, scripture, quote that gets me through tough times is: From two of the St. Therese's (or Teresa):
We always find that those who walked closest to Christ were those who had to bear the greatest trials."
~St. Teresa of Avila
"The greatest greatest honor God can do for a soul is not to give it much, but to ask much of it."
~ St. Therese of Lisieux
"Suffering is the very best gift He has to give us. He gives it only to His chosen friends."
~ St. Therese of Lisieux
26. When someone is diagnosed I’d like to tell them: I am sorry... Allow yourself time enough to grieve for what you have lost, because there are losses, but at the end of that time, don't stay down, because you are more than your diagnosis! You are still the same person, at the core. You don't change... your situation might have changed, but what makes you, you cannot be changed without your permission. God give strength to endure to those who ask... He doesn't give the whole lifetime supply at once... He gives you just enough each day to get through, and He is ever faithful.
27. Something that has surprised me about living with an illness is: how much faster my 70 something organ teacher can go up stairs than I can... She can run up a whole flight before I'm even on the 4th step. Also, how weak I am and how little I can do.
28. The nicest thing someone did for me when I wasn’t feeling well was: immediately start praying with me.
Conflict
I hate conflict. I really do. Some of my worst memories growing up involve heated "discussions" (yeah right!) that my parents had with each other, with terms being tossed that I am equal parts impressed and horrified that they knew. Watching videos of war torn countries, of so much death, despair and destruction grabs such a hold on my guts. I rarely cry... in fact, my best friend has seen me cry perhaps 3 times in the 5+ years we have known each other. But I suppressed crying such a long time ago, because I do believe that I could, and would, weep buckets and buckets of tears if I should, every time I was moved.
My heart aches so for the 9 year old and others that were killed and injured a few days ago in Arizona. Such senseless violence has the ability to completely kill any internal peace. I'm sure being completely glued to the TV for the first day did not help. The fact that from early one, people from both sides of the political aisle have used such a horrific incident to not stop and pray for those affected but to gain points in some meaningless debate and rhetoric. Lives have been lost. There is a 9 year old, who but for the actions of one disturbed individual, might have cured cancer or done some great thing... but above all was innocent and had many years of love to give... Her life was taken, along with a federal judge and congressional staff members, but ultimately peoples' fathers and mothers and sisters and brothers and best friends. And I don't know... maybe I'm just too sensitive, and maybe other external factors are coloring the intensity of my reaction, but don't you think that these so-called professional journalists could have shoved their speculations about how the position of the "other side" could have lead to this, at least until after the victims were in the ground?
I've prayed very little these past few days--much less than if the internal silence weren't so non-existent. I hope that the inexpressible groanings of my heart will suffice for prayer right now, because I don't have much else to offer. Maybe I am so especially sensitive to external conflict right now, because of great internal conflicts. Yes, you guessed it. Yet another "crisis of faith"... well, not so much crisis, in that I have no faith at all. But, I can't say that I would have gone to church anyway these past two weeks if I hadn't been sick already.
Things have become confused lately, and in attempting to seek clarity, I have become even more confused and conflicted. I have come to question things that I once held very dear, that I once had great union and loyalty with.
There will be more about this in future posts. I cannot speak of it right now. I only ask for prayers that I am able to follow God's will, whatever that might mean for me and ask of me.