“I do not feel like I have the courage for this journey, but I have Jesus—and He will provide. He has given me so much to be grateful for, and that gratitude, that wondering over His love, will cover us all. And it will carry us—carry us in ways we cannot comprehend.” from Kara Tippetts, Mundane Faithfulness
This post is more for my own personal venting. Venting about two months of trying to find a new doctor and what I’ve encountered. Poor me, yes I’m choosing to feel sorry for myself for a moment. Long enough to first write the disclaimer that I do indeed have FAITH, I know I’m not alone in this. But the human in me needs to get this out, to share my real nightmare journey. That I don’t feel like I need to always smile, to always respond, “Oh I’m ok, tomorrow is a new day and new blessings.” I’m being real here. Even with Faith, I have very low times and I question why or I’m struggling to hear from God how I can help myself.
The above quote from the fabulously faithful Kara Tippetts’ blog, who recently went to her eternal home after her long fight with cancer, came to my mind. She shared her journey. The up’s the down’s the in betweens. Her Faith was solid. I learned a lot from her writings. I felt like I had no business complaining or whining. My illness isn’t “terminal.” It’s just “loaded with preservatives.” Meaning, with new drugs like Prednisone and Plaquenil you’re expiration date is longer. The life expectancy for someone with Lupus wasn’t too good but in the last ten years they’ve come a huge way and a person can live a long a long life. But this disease is one big cruel mystery, a ever ending lineup of sub-contracting illnesses like kidney disease, heart disease, all known as “complications of Lupus.” So you don’t get the “Terminal” stamp but rather the “It’s Complicated” stamp. I feel like I’m at the carnival riding in one of the rail cars in the haunted house. You don’t know what to expect around the next corner.
How dare I break down and complain?! Truth is, I can if I want to. Then I can count my blessings which are many. My journey is not a constantly torturous one, nor is it in preparation for my journey to my eternal home. Thing is, it’s not considered terminal so don’t get your affairs in order….BUT, it CAN take your life, “we just don’t know.”
A known illness like SLE may have a name, but its cruelty is a mystery, it’s determined to keep the sufferer in constant, painful transition. To give false hopes of a reprieve, before it shows you it has the power to take your last breath from you. However, it can’t take His love from me and the blessed assurance Jesus’ constant presence is mine and I know where I’m going. I’m not blindly following a religion because “now I’m sick,” I’ve spent my life in a private journey learning about God, Jesus and my own PERSONAL beliefs and relationship with a loving Creator
I had the honor of being interviewed by the Lupus Foundation’s magazine, Lupus Now, in their Spring 2015 issue. The topic I was asked about is Lupus and GI Tract problems. I was interviewed back in November of 2014 when I still had a primary doctor and things were looking up. I mentioned being your own advocate and it turned out I really needed to and still need to be so. Read this interview here.
But I am human and I’m tired and frustrated.
I love my Creator. God has been my constant companion throughout my life. I work hard at living my life from His teachings. Jesus is my Savior. Now comes the part of me that has had just about enough of struggling through mankind’s messing things meant for good up. Greed, unkindness, a knack for superiority over those unable to fight for themselves. I always forgive, the meek SHALL indeed inherit the earth, however, the “turning the other cheek..” part has been difficult because I’m unable to turn the other cheek. It’s too painful, Lupus SLE and kidney disease has me pretty much unable to move, I can’t turn my body….period. It hurts.
Ha, ha I know. Funny analogy! But painfully true. I’m taking a step back from complaining about senseless, everyday annoyances. I have a story to tell. It’s of my journey in the healthcare maze these last several months. Actually, it started back in November of 2013 with a hospitalization for acute pancreatitis but I won’t bore myself or anyone who accidentally reads my blog with the specifics.
I have Lupus SLE. I also have hypothyroidism which doesn’t bother me at all really, I don’t notice it. Along with the SLE I’ve developed chronic pancreatitis, kidney nephritis, rheumatoid arthritis, and a laundry list of a little bit of this and a little bit of that. All annoying stuff that can ruin your day, or kill you, even if you are dedicated to not allowing it. I’ve broken just about every major bone during my years of training horses and general clumsiness. I healed just fine and went on. But nothing has prepared me for the struggle of negotiating the maze of the healthcare system. Lupus is a small splinter compared to the hurt and pain of finding healing.
I’ve settled into a new normal. A life that is starkly different than the first 42 years of my very active life. I’ve accepted it, trying to make new memories, live it to the fullest. I’ve been able to because I had a doctor for over 15 years who went through this with me, knew his stuff. Studied up on Lupus. If he didn’t have an answer, he got me into a specialist quickly before damage was done. I soon learned to relax, my extreme fear and anxiety I had from how Lupus was attacking me faded. In the times I became seriously ill, in pain, scared…. I had an ally …. my Internist. This allowed me to start living my new normal, to not obsess over every symptom, to realize I would be “ok” as long as I worked WITH my physicians and did what I was told, take the medications that after trial and error worked. He LISTENED and BELIEVED me. He never spoke down to me. He showed me tough “doctor love” I call it. When I researched some new drug I was sure would help I’d tell him and he’d tell me all the reasons he won’t prescribe it, leave the diagnosing and medication choices to him.
Well the problem is, He, my hero and medical advocate has worked so hard for so long finally decided to retire and by gosh he did. In March he said his goodbyes to all his faithful patients and with our medical records in hand, we all scrambled to find a new Internist.
What the?!!!!! Since that day I’ve felt like Alice in Alice in Wonderland. The healthcare system where I live is severely BROKEN. Bureaucracy has taken over and my personal experiences have been a nightmare.
I’ve always been the, “Oh give them (doctors) a break. Give whoever a chance, there’s a learning curve here with Lupus.” Well not here, it’s more like a “learning black hole” where you go in search of a doctor to help you and right when you say, “I have Lupus SLE and….” they fall into the black hole where all their medical knowledge is lost and a blank stare is what you get. Then comes the lab rat experimentation process where, they don’t really understand your lupus but they’ve got some new, exciting ideas to try on you! What happens? These new doctors want to change your medications that have been working great after ten years of trial and error. You end up sicker, back in the hospital and they don’t come visit either. You just get a huge bill.
In the last month I’ve been suffering, and I mean suffering, from some kind of cruel kidney/pancreatitis tag team match. Kidney stones, no not sure, kidney damage, not sure about that either but they’ll check on it. I’ve been to the ER twice, Urgent Care twice. I’ve been asked a million questions, I answer them all while laying on the gurney with my feet in the air, knees to my chest, withering in abdominal pain. “I have LUPUS! I don’t KNOW what’s wrong that’s why I’m here! What NUMBER is my pain? I don’t have patience for math right now, can’t you see I’m in dire need of evaluation?! You’ve got my life history on that computer, please for the Love of God, help me. Who’s my family doctor? I don’t have one now, he retired and is in Costa Rica!! I’ve called two different clinics to get in for a new patient appointment but they are booked out for another month or so. I did manage to get an appointment with a Rheumatologist but was turned away because I was 5 minutes late with a valid reason, unusually heavy traffic due to an accident then not being able to find a parking space. TURNED AWAY after waiting two months for this appointment. I’m doctor less ! But my disease doesn’t care. Yes, I’ll give you a urine sample! Thank you for asking finally.”
After hours spent in the ER each time, I’m discharged with printed out instructions stating, take these antibiotics and these other new medications and make an appointment as soon as possible with your doctor. We *think* you’ve got kidney problems. “Yes, you’ve got blood and protein in your urine, that’s not normal. Oh and your duct is dilated too. Do you have someone to drive you home?” I did, and home I went. The next day is spent on the couch, trying to google doctors in my area, then calling to get in. Wow do I miss my now retired Internist. He and his staff must have done all this leg work for me, but I’m not getting anywhere. A month or two out and the most important question I get right off the bat is, “Do you have insurance and who is the provider?” Yes I do have health insurance, good health insurance with a high deductible. It’s not government provided, the premium is high. But health insurance is important, I need it and I use it…. when I get sick.
I won’t even go into what I’ve gone through the last two months with this health insurance company trying to get an MRI mammography scheduled, ordered by my now retired doctor, approved for coverage. So far, I haven’t been successful. The $2000 the procedure costs I don’t have, so I have postponed it indefinitely because frankly, I’m exhausted from fighting to receive medical care and fighting Lupus SLE.
I’m a fighter, optimistic, a cheerleader who’s mantra has been, positive attitudes help heal us. But I’m only human and my ability to fight is wavering. A person shouldn’t have to fight so hard to save their own life.
I’m more than thankful for the many doctors, nurses, radiologists and all medical professionals because their job is to keep us alive, or to help us on the journey of healing or on the journey to dying. Yes, long hours, years of training, sacrificing family time BUT the pay is good. I’ve had some excellent doctors who’ve gone beyond the call of duty to help me, for that I’m truly thankful. But these last few weeks have shown me a dark side of healthcare. A side where overbooking patients, spending five minutes getting to know you and coming to a diagnosis, and WRONG diagnosis are my norm. Moving you through the daily appointment process like a cow going to slaughter.
Yes, I’ve been diagnosed with diverticulitis more times than I can count without having a single scan or X-ray. Most recently after getting this diagnosis and a couple of prescriptions for my new diagnosis, asked to sign the discharge papers I suddenly was told, “Wait! checked your blood, you have a dangerously sick pancreas. Your numbers are at 1000 and normal range is 40 to 60! We must admit you! You don’t have diverticulitis.” Had I gone home, the pain would have continued until I passed out and passed away from a very sick pancreas. Now wouldn’t most people be a bit worried about the professionals in charge of their care?
THIS is why I know God is indeed with me, guiding my steps, my thoughts, my intuition.
I understand that not all doctors are this way. Not everyone experiences such unfortunate circumstances as these. I still respect the profession. They’re my only chance, here on earth, of a longer life. But this isn’t funny nor fun. I don’t have a solution, and I’m the person that tells others, if you’re going to complain or whine, then have a solution to share as well.
As of this writing, I’m still waiting on my appointment with a nephrologist. I’m still waiting to get in to see a new Internist. I go to sleep asking God for patience and Grace. I wake up thanking God for this morning and the many blessings I DO have. I’m thankful. The reality of the “pickle” I’m in is all too real though. I’m a boat left to drift aimlessly out to sea, with a small pinhole and water coming in. I know all too well when it comes to Lupus SLE that pinhole can turn into a gaping hole quick and the water can overtake my efforts at bailing it out and I will sink.
To God, I’m His wonderful creation. He loves me. To the people I’ve met lately, I’m an account number, a person in Room 224, an unknown diagnosis, the eighth patient they’ve seen today. A name and date of birth on a wristband with a barcode they can scan to safely administer treatment to the right patient in a huge sea of patients all needing help.
It’s times like these I use a word I forbade my daughter to use, “hate.” I don’t like that word. We do not HATE. We can dislike, not be very fond of, but hate is a strong word. But it’s times like these I HATE Lupus. Because it’s not only beating me, it’s got the mainstream medical profession stumped, therefore they can’t, and what I’ve experienced lately, don’t have time or knowledge to help me. But they WILL talk to me long enough to bill me $675 and write an antidepressant prescription which I don’t fill because I’ve tried that route. It’s in my records there. This isn’t in my head, it’s in my sick body.
My solution, my hope is, I’ll once again find a doctor who has time for me and understands Lupus SLE is a cruel mysterious disease that must be taken seriously. Then my fears and anxiety that has returned will once again fade and my fighting spirit return. Please let me in, I only want ten minutes of your time and here are my records. Please, look them over, then look me square in the eye and let me know if you are up for the challenge of Lupus SLE and a woman that wants desperately to live. Then give me that required referral to someone who CAN help me.
Too many close calls lately, and all because I can’t seem to get a doctor to listen, read my history, and treat my condition. Instead they are in a hurry, possibly overworked? Possibly thinking I’m a head case? I don’t care what their reasons are. They took an oath, to do no harm, and recently they’ve made some serious decisions at my expense. God gave me a fighting spirit and the knowledge to choose your battles wisely. I am. This life is so worth living, I’d “hate” to see it end because I just couldn’t find someone to listen.