I have been on Disability since 2007 (age 54 to 64) because of chronic Lyme Disease and (untreated) severe sleep apnea. During this time I have had coverage through Medicare and Vermont Medicaid.
My severe sleep apnea problem is due to congenital factors: my facial bone structure, jaws, and throat passage are very small for an adult. I don't fit the profile of a sleep apnea sufferer, that of an overweight, middle-aged man. I have never smoked, am of normal weight, have done yoga for 33 years, and exercise regularly. Apparently, after menopause, one's muscle tone relaxes so the blockage of air in my throat got worse with age. Because I was unable to tolerate CPAP machine or dental apparatus, I had surgery within my mouth in 2007 to attempt to alleviate the apnea. However, for me the operation provided no relief and I was never informed of any other possible remedies.
While I struggled to manage the worsening symptoms of my sleep apnea, I was also being treated for the Lyme Disease with a series of 18 month-long heavy antibiotic and antimalarial drugs. At one point I stopped treatment altogether when the side effects became too problematic but was forced to resume it a couple of years later when the Lyme symptoms of arthritic joints, brain fog, etc. became worse. This roller coaster of being off and on medication continued for several years. After a period without treatment, I resumed taking medication in February of 2014 after falling asleep at the wheel, going 55 mph (cruise-control) and drifting off the road into a snowbank. Eighteen months later I stopped medication permanently. I have been free of arthritic joint pain, the main symptom of my Lyme Disease, for over 2 years now so I believe I have finally beaten that disease.
By spring 2016 a new health issue related to my sleep apnea emerged. I was having episodes of “sleep urgency”: my eyelids literally involuntarily dropping over my eyes after driving only 15 minutes during the daytime or after a 9-10 hour sleep at night. My severe sleep apnea was such that I was stopping breathing and then awakening 60 times an hour according to the Sleep Lab studies.
My local clinic G.P. referred me to a sleep specialist whom I saw 4 months later, in September of 2016. The sleep specialist did another sleep test and mentioned the (new?) surgical options. I insisted that I be considered for maxillomandibular realignment, in which both jaws are fractured and pulled forward and reset. Despite urging me to try wearing a CPAP mask again, the specialist reluctantly gave me a referral to a surgeon at DHMC. In January of 2017 I was able to see the surgeon who asked me to get dental x rays, molds of my teeth and a CATscan of my jaws, which I got within 2 weeks and sent to DHMC. When I did not hear back from them after 2 months, I contacted them and was given a follow-up appointment with the surgeon for 2 months later, May 2017. At this appointment, the surgeon decided that he needed to first remove my one-remaining wisdom tooth which was impacted before he could do the jaw surgery, and he was able to schedule me the next week for that Outpatient procedure at DHMC because he had an unexpected opening. At that time, he made a surgery appointment for the maxillomandibular realignment for 6 months later (to allow bone to regrow where the wisdom tooth had been), in early November 2017. That was 18 months after my initial G.P. Appointment to get help for falling asleep at the wheel of my car (having fallen asleep at the wheel and having an accident already 2 years earlier).
At every step of this process the medical system has tried to discourage me from pursuing this treatment: delaying appointments, stressing the radical nature of the surgery and urging useless alternative treatments I had already tried for 10 years without benefit. My surgery appointment, which I had scheduled 6 months in advance, was even given to another patient at the last moment and mine rescheduled. The hospital claimed it was a serious cancer patient for whom one week's delay would have been critical; though I am now cynical about the American medical system and suspect it was due to financial considerations or other favoritism. I don't blame the doctors here. I believe they are being pressured by the hospitals to not offer such treatments to patients who have less-than-Gold-Standard medical insurance, like me.
Just two weeks after the surgery, I am already experiencing so many benefits. I have been sleeping 7-8 hours at night with none of the constant daytime sleepiness that I experienced previously. I feel completely different when I awaken each morning, with a bright energy and awareness, rather than dragging myself from bed only to end up dosing on the sofa. According to my partner of 15 years, I am breathing during sleep in a quiet, “normal” manner he has never heard before. He used to regularly shake me awake in the night when he sensed that I had stopped breathing. My health, and life, are already completely transformed.
Receiving Medicare through Disability was critical to my receiving treatment for the chronic Lyme Disease and the sleep lab studies and eventual treatment for the severe sleep apnea. I can't even imagine what would have happened to me the past 10 years without such. Without my SS income and the medical insurance from Disability perhaps I would have slipped into deep poverty, homelessness and such; though, my 15 year-relationship and shared living expenses with my partner, Stan, who is 69 yrs old and also has only SS income and a small IRA to live on, probably would have prevented such.