Hello there friends, Merry Christmas! I love this season, all the music, decorations, bustle and bells. But in the midst of all of that…many of us are still dealing with the same challenges, perhaps trying to move them to the back burner while we’re cooking up holiday surprises. I would love to sit here and wax on about the joys of the season…and I promise I will in my next post! However, today, this post is for those who are “in it with me”. Who know how hard the journey has been, and that it isn’t over yet. Whether you are facing a challenge today yourself, or if you are just empathizing with me for my sake, thank you, sincerely, for sharing a moment with me here ❤
This morning, I had an appointment with my GP (general practitioner) doctor for 2 reasons. First, I need his authorization every time I need to see a specialist and I am due for a check in with the OBGYN for the large ovarian cyst that they found during my hospital stay.The second reason was for pain management – which is a nicer way to say I was about out of my pain meds and my gastro refuses to write a script, and keeps kicking me to the GP even though he knows the GP hates to dole out narcotics.
Now, a few things are wrong with this whole situation. First of all, in the past, when I’ve been hospitalized with my Crohn’s, it’s always taken about 6 months to truly get back on my feet – working, exercise, stable emotionally, and off the pain meds. We are at an even 5 months since I was released from the hospital, but only 3 weeks off the steroids, (by ditching those, I started eating normally, lost weight, less stress, no more bone damage…but lost energy, and have more pain, it can apparently takes months for the body to re-adjust). I have started Cimzia, the biologic inject-able which will be a long term maitnence dosage, however that can take 3 months to fully kick in before we can asses if it’s even the right treatment for me. We are 2 months in.
All of that to say, I’m back to some work and exercise, still not sleeping, and all of these things are made easier with a little oxy. Now, I know it’s addictive, I know people have issues with it, and the fact that I need it still is embarrassing at best, and frustrating at worst. I have, in the past, always been able to wean myself off without any outside help, but it genuinely takes a long time for my body to rebuild it’s strength. In this case, I have been sick, in pain, not sleeping, battling my Crohn’s and gut infection out of control for a solid year before I was admitted. That means a year of mal-nutrition, muscle depletion, and un-rest, (we won’t even go into the emotional issues and the over all effect of this on our new marriage), from which my body is trying to recover.
My gastroenterologist said that it was “annoying” to take a test every 2 years to get certified to dispense pain meds, so he has sent me to several doctors, and even suggested that I just go to the ER when I needed a refill. The GP I found to work with is so understanding, and was willing to help me, but was upset at being put in that situation, and I don’t blame him! Also, he is retiring in 2 weeks, so then what? He ended up filling the scrips, suggesting an anti-depressant to help me sleep, and wished me luck.
I felt awful sitting there in his office. I was clearly stuck in the middle of these doctors and the state regulation, and felt bad asking the doctor for anything! In fact, the hubby still doesn’t like the fact that we’ve had to return to western medicine after trying to use purely natural and holistic methods for the last year. However, I had walked in feeling pretty good about the fact that I had been biking and exercising, and gotten myself down to 1/2 a pill a day vs. the 2 full doses a day I was on when I first went to see him. But to him, he just saw a young woman who looked like she should be well, and didn’t believe I should have been on anything to begin with…and admits that he knows very little about my disease and nothing about the Cimzia I’m taking. He thinks I should get a new gastro, but it was hard enough to find this one who has a pretty good beside manner, and was willing to work at the level of treatment I needed. There’s the rub my friends. I wish I could have just one doctor taking care of me, who can see the whole picture, who understands some of the unique factors in my case and the way I’ve dealt with it over the years. In fact, as I sat there listening to his frustration with silent tears running down my face, all I could think of was that if only he knew how bad it had been, how many doctors had thrown up thier hands and said they couldn’t help me, and how hard I had worked to get back to “good”, and how I wouldn’t be crying if I hadn’t had to drive my husband to work at 3:30 in the morning because the Army is crazy and neither of us got any sleep last night.
As I walked away from his office with 3 scripts in hand, I pondered how there was no way my husband was going to let me use an anti-depressant after what he’d seen his veteran friends go through. I also thought about how low it feels to “need” something no one wants to give you, even if they agree you need it. I thought about how I needed to be at my best to straighten out some work stuff today, and probably wouldn’t be because of the sleep deprivation. At least I’d have some meds to make me more comfortable right? Nope! The pharmacy was “out of stock” and won’t be able to fill them for several days. Sigh.
Here is the deal – the main reason I feel the need for all this medication is because society isn’t made to let us rest. I can’t take more time to heal, life is moving on and I need to move on with it or get left behind! I already feel like I’ve missed so much, even lost some friends, let people down, and been forgotten in my hibernation. I want to wake up! I want it to be summer in my life again!
So what to do? I don’t know. The government has made insurance more messy, so we (doctors, nurses, patients), spend a lot of time making phone calls, filing papers, and making less than necessary appointments to meet requirements and at the end of the day, I’m not really any better off than I started. I just feel a little worse about my situation, and really want to move it to that back burner again.
To end on a positive note…as frustrating and embarrassing and upsetting as all this is…I don’t want to seem ungrateful – because I’m not! Just yesterday as I rode my new bike in the sunshine I was counting my many blessings. Any way you slice it, I am so much stronger than I was this time last year, physically, spiritually, and mentally. God has been so good, and stood by me though it all. I may not understand Him all the time, but I see His hand in the little things…in the beauty of a blue sky, the loyalty of a little dog, the laughter two people share. When I see these gifts I know it’s true,
“For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”
I’m so un-worthy, yet I am encouraged – may I complete those good works, and be a blessing to this world before I am called home. May it be true for you as well.
Much love to you today dear friend, and thank you again for being “in it with me”. ~ Morgen