THOUGHTS FROM THE CAREGIVER
Although I could go on for days regarding the struggles Rachelle and I have faced during the course of this journey, I'll try to provide a few brief thoughts that might give some basic insights to everything we've had to deal with.
As Rachelle's husband, I like to think of myself as a problem solver and someone who gets things done when Rachelle needs assistance. With that said, there's been nothing more frustrating and painful for me than the hopeless feeling of watching Rachelle suffer over the past few years, and me not being able to do anything to help her or ease her pain.
She's gone through 6 surgeries, been to countless doctors appointments, counseling sessions, and had extensive testing, but until very recently, had no official diagnosis. I feel like a good percentage of this journey has been fighting the frustration of not knowing what her illness was, and which direction to head in terms of treatment.
We've had issues with doctors and nurses regarding best treatment options, emergency room doctors assuming she is seeking pain medication and treating us like addicts, disagreements with family/friends who don't quite understand her diagnosis, and/or believe they know better regarding how she should/shouldn't be handling this situation.
Once Rachelle was actually diagnosed with Chronic Sclerosing Osteomyelitis, it's been equally difficult explaining everything to friends, family, my employer, other doctors, and pharmacists, etc... because most people are not aware of this disease... and until recently, Rachelle and I were both in the same boat.
In addition to the issues mentioned above, there's the financial aspect which has created plenty of stress and anxiety during this time as well. I will not get into the specifics, but as you can imagine with 6 surgeries, 4 of them far away from home, being either in Minnesota or Florida, multiple hospital stays, medications, etc.. that we have been forced to pay a truckload of medical bills over the past two years.
Complicating things further, Rachelle was denied for Social Security because her disease hasn't been officially recognized on their list of the "approved diseases", and therefore, we have been unable to receive much needed financial assistance to keep up with the medical bills/debt we have accrued. It is even more frustrating that the few people we have encountered that have CSO of the jaw, have received SS disability. So now we are having to get a lawyer involved to try and get some relief.
One last problem I'll vent about is the lack of support groups or websites directed towards caretakers not related to elderly individuals. I've tried to track down different websites, forums, and/or support groups dedicated to younger caretakers dealing with chronic pain, but have come up empty.
These are some of the struggles we have dealt with over the past few years but at least it does look like we may finally be able to see the light at the end of the tunnel.
Although it seems like we've had to deal with a lot of negatives, we've certainly had our share of blessings as well. As Rachelle, myself, and her family have had to deal with this for a couple of years, we're definitely a stronger and close-knit family than ever before.
Another positive that has come from this experience has been that we've been able to help others dealing with chronic pain, even if it's just providing a small seed of hope for the future. We've met so many new people through Rachelle's blog and other outlets who have shared in similar experiences and/or are just beginning, and looking for advice.
It's certainly been a wild ride and hopefully it's coming to an end soon.
Picture of Rachelle and I before surgery at the Mayo Clinic
Please keep Rachelle in your prayers as she continues to recover from her latest surgery.
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