Things have been not awesome
- 2 hours ago
- 4 min read
The last couple of weeks have been hard. Stupid hard and they sucked. A few weeks ago I started having new chest pain and back pain, along with trouble/pain when swallowing. This resulted in a trip to the ER and a few days in the hospital. I had a CT Angiogram and an upper endoscopy along with an EKG, bloodwork etc.
The back and chest pain can be an indicator of my Takayasu's Arteritis flaring. You may remember that we are not currently treating my Takayasu's Arteritis with my immunosuppressant cocktail we had in the past. We suspended my immunosuppressant drugs so that my body could focus on suppressing the infection on my aortic graft. But the back and chest pain can also be an indicator of the infection on my aortic graft worsening or doing additional damage. Suffice it to say, the symptoms were troubling and didn't point to one specific diagnosis. After consulting with my Infectious Disease, Rheumatology and Gastro teams they believed that the pain could be from my Takayasu's Arteritis. So, Rheumatology increased my steroid dose and send me home to see if it would help. Normally, a blast of the high dose of steroids would quickly resolve my pain and reduce the inflammation. After five days at the high steroid dose, I didn't feel any better. The only consolation was that my blood work showed that my inflammatory markers had stabilized. But the pain was still there - and had in fact gotten worse. The pain was clouding my day - how much I was able to do, my focus, my ability to sleep and my overall sunny disposition.
So, this past Wednesday, I called Jeff home from work, and he took me back to the ER. And I got admitted for observation again. At this point, we had ruled out anything too scary with my Takayasu's Arteritis and my infection. The goal of this trip to the hospital was to get my pain under control. They switched up my pain meds and got me on a good schedule moving forward. We came into this hospitalization with the mindset that the pain may be my "new normal" and that managing the pain would be part of my daily life. We even threw around the idea of accessing the palliative care team again. The whole situation was very heavy emotionally. I had to come to terms with my mortality (again) and my hubby and son had to work through some of the same emotions. I try to live with the mindset that every day is a gift - while getting the most life as I can out of each day. But the pain had slowly eroded my positive outlook. I was living minute by minute trying to survive.
After al lot of discussion, we are now thinking that I could potentially have Costochondritis - inflammation of the cartilage that connects the ribs to the sternum. This is a diagnosis of exclusion, meaning you rule out everything else that you can leaving the only other diagnosis that may fit the symptoms. Having this as a working theory/diagnosis is good, but also causes other issues to surface:
*Remember that we increased my dose of steroids? Well - you can't just decrease your dose back
to what you were taking. You have to taper down your steroid dose slowly. I have a plan from rheumatology to taper my dose down over time.
*Medical appointments - so.many.medical.appointments. Specialists, tests, antibiotic infusions and everything in between.
*Insurance ... we have met our deductible and out of pocket max, but there are bills to navigate, payment plans, prior authorization for medications, and trying to fill critical prescriptions. On more than one occasion we have had to transfer a prescription to a different pharmacy to get it filled in a timely manner.
*Side effects from the high dose of steroids and from the pain meds now need to be managed. Sleeplessness, sleepiness, easy bruising, agitation, constipation, etc., etc., etc.
*Adjusting to my "new normal" - which means lowering or changing expectations for all aspects of life. And, trying to help my friends and family understand what I can and cannot do now, when I can barely figure it out myself.
Life is hard - full of ups and downs, but we continue to trudge through it all. The month of March brought a trip to Disney World with my bestie which was AMAZING, we had to put our "old man" dog down, followed by an awful cold virus that led into the past few weeks of pain and medical uncertainty.
Our anthem song lately has been "Backup Plan" by Luke Combs and Bailey Zimmerman. Hubby and I have been leaning into the lines "But if you're doing what you love and it kills you. Well, you can live with that all day long". and "Gettin' back up, that's the only backup plan you need"
So, we press on - doing what we love. Spring is here, and the outside world is filled with newness and rebirth. But I am reminded that nothing can bloom unless there are storms and rain. This weekend my brother and his family are in town so we can celebrate Easter together and we will head off to a Chicago Fire game at Soldier Field. My "try something new Tuesday" activity for several weeks has been exploring watercolor painting, which has helped ground and clam me. Hubby runs a marathon in three weeks and our son graduates from college in four weeks - I am doing everything in my power to celebrate these milestones with them.
We continue to grow, adapt, and change as we navigate life's circumstances.
My last two hospitalizations have been on the "Observation Unit" which used to be the pediatric ICU. The decor is under the sea themed with fish - which made things a bright brighter and fun.
Amazon wishlist:
I am enjoying utilizing the products from "A Dream or a Day Art" (Watercolor Supplies | A Dream Or A Day Art). I am interested in the hardcover watercolor sketchbook, essential brush set, artist pen set, pencil roll, mini color wheel and replacement watercolor pans in "lake green" & "dark red"