I wish I could describe what mornings are like for me when My body/brain tries to wake up. The brain: high pitched noise, can’t think or function much, dizzy, groggy, can’t come out of the sleep. The body-stiff, slow moving, pain in various areas. It feels like trying to resurrect from the dead, but without any miraculous intervention like Lazarus had. And when you add in being able to remember the terrible nightmares I probably have every night but usually they stay repressed in my sub-conscious mind I’m guessing–it is crippling. The only reason I have the incentive or courage (?) to get up is because my interstitial cystitis bladder hurts so bad and I must get to the toilet. That and the stiffness/pain in my low back (from old injuries and scar tissue from surgery, etc.), neck, and down my left arm demand movement (bone spur in neck causing it). And so I get up. I make it to the toilet in time. I take the morning medications (thyroid replacement and hormone replacement therapy) that may help my brain wake up. And I make my blessed decaf. Only decaf because if I drink real strength caffeine, my brain will freak out and likely go manic. 10% caffeine in decaf feels like the real thing to my sick brain now. Then my usual routine is to go to my computer to begin the process of waiting for my brain and body to wake up and function more normally. Waking up to Bible study and prayers and connecting with God is the best part of waking up…(even better than the “Folgers” in my cup). I ding around in Facebook some, I send various emails, and sometimes I write a blog post. I reach out to friends by email. Sometimes I am so “flat-lined” that I just sit in a chair and wait, usually listening to something to try to coax my brain into reality. And eventually the “pressure and noise” in my brain subside, my heart and brain decide to talk to each other and get my blood pressure up, and dizziness subsides, and eventually I can really start my day. It used to take about a half hour to feel better. Now it is taking hours. And this is just one of my many issues…. I believe the cause of this is a combination of my diseases, but probably mostly the autonomic nerve damage occurring because of Sjogren’s Syndrome. But I have multiple health issues going on and it is hard to know. My doctors don’t know. The people on my Facebook Sjogren’s Christian Support group report feeling tired and stiff upon waking, but I think this is a bit more I have going on.
While I’m venting, it infuriates me that this little understood, acknowledged DISEASE is still called a syndrome. And it doesn’t even have a right insurance medical code-they code it as “Sicca” (dryness). And all the expensive items one needs to manage it–eye drops, nose ointments and sprays, mouth sprays and lubricants, skin lotions and essential oils, and many other items are over the counter products and not covered by medical insurance. Not to mention the dental issues and tooth loss it causes which are also a medical problem for which there is no medical insurance coverage. There is no cure for Sjogren’s/Hashimoto’s, nor any other auto-immune disease. The pharmaceuticals some people take don’t really work and cause damage of their own. Some people get help from practicing a very limited diet, but if diet was the cause of auto-immune diseases and Sjogren’s wouldn’t almost all Americans be stricken given the standard American diet? (Please don’t lecture me on my need to try this or that diet… that is an irritating thing to do to a sick person.)
So now I will turn from my pity party venting to looking for my blessings and gratitude for how God is providing for me in my illnesses.
Financial Provision: God has provided for me financially through my husband which enabled me to quit my job at age 57. I quit because I was no longer able to keep up with all my life (I was doing A LOT in addition to working a high stress, hard legal assistant job.) I had hoped to work part-time instead in some Christian mission directly supporting the gospel and humanitarian relief, but my diseases escalated so badly, I have not been able to even work part-time, not even as a volunteer. I quit my job because I felt so badly and like such a flake for often calling in sick in the morning and having to go in late. At that time, I did not yet know about my autonomic nerve damage issues and did not realize what was happening to me. I have (so far) the money to purchase all the many products I need to manage my diseases. And I keep surrendering the fear that the financial provision might be removed, and trust God daily. I keep trying this or that latest recommended supplement that someone thinks will help cure me. I do research of my own and try various supplements to try to help myself. I am blessed (so far) with financial provision and I am grateful. I don’t know how low income, single etc. people could possibly navigate or survive this hideous Sjogren’s and its companion diseases. My prayers go out to any readers in that situation. I have a strong desire to serve God, but every time I sign up to do things, my illnesses often prevent it. I can now only serve on a drop-in, if I happen to be well enough, basis. That is really frustrating, but the ability to serve or even just participate in an activity, anytime, any way is a gift from God I now cherish and value more than ever.
Practical support: My husband also carries the brunt of the heavy lifting in managing and caring for our household. I still do a lot, but I wouldn’t make it without him. Again, I try not to worry about what will happen if that provision is removed and instead am thankful every day that I still have a caring husband, a house, and provision in my illness. If that changes, I will deal with it then. Going through prostate cancer surgery this year and waiting to know a long-term cancer outcome have been a challenge, but God is enabling me to trust Him one day at a time.
Eternal Hope: I have the joy of my salvation in Christ and my eternal hope that one day I will get my perfect resurrection body and I will no longer suffer from diseases and structural body damage. No more pain, suffering, death, sin–no more nightmares, fears, or anything bad will be on the New Earth with Jesus. That HOPE is real. It is NOT just my pie-in-the-sky. There is objective truth, and that truth is God and his message to people, the Bible. I don’t know exactly what the goodness and bliss of eternal reward for Christ believers will be like, but I will be dwelling with God and other believers in peace forever. That hope really does give me the strength to face another day each day and do the best I can with my limited circumstances.
Learning to trust/lean on God: I don’t know why God has chosen these health trials to be my path in life. I know God has the power to miraculously heal me or any other suffering person, but He rarely seems to choose to do so in these present times. If I had never gotten sick, if I had been “successful” in the world’s view, had been able to earn a lot of money or do some “great” things, I shudder to think of what I might be like. I’d likely be prideful, arrogant, and without any compassion for those who are sick and needy. I am grateful for my illnesses and weaknesses, and even for my sinfulness, which have pointed me to my great need for God and his forgiveness and strength to endure and have given me compassion and care for the suffering. My hope and my prayer is that God’s power might somehow be perfected in my weaknesses and that God may somehow use my little life fraught with illness and weakness and sin for His glory. I believe that people who persevere against health issues, pain, suffering, and especially those who fight mental illnesses to LIVE another day may be the bravest souls of all, and that we may be earning an eternal reward for our perseverance in weakness that we cannot yet see. I hope those people who are strong and able to serve with good energy realize what a gift they have been given by God to do so, and that they can have compassion on those who are weaker and can’t contribute much through no fault of their own. Oh how I wish I could work a good job for God, to serve at my local church, etc., but I just have to be content to self-care and do what little I can when I can. It is a terrible new way of living. But it seems to be God’s chosen path for me. Oh friend, especially those suffering from crippling depression and anxiety which I sadly understand too well, I hope this little vent somehow might encourage your heart to persevere through another day. I pray for your complete healing. I pray for God to encourage us all that He may be doing something in our lives that we cannot yet see. Oh unbeliever, please try to read the Bible (begin with the gospel of John I recommend) and ask God to please speak to your heart to open your eyes to His reality, beauty, goodness, truth and reliability. If I can be of help, it would be my greatest joy to help someone discover the Bible.
Sick folks: it is okay to vent and lament once in a while over our predicament. I thank God He helps me trust Him and look for the blessings when I vent.
There are so many more blessings I could name, especially for caring and praying FRIENDS, but I have run out of space for this post.