I’m Not Okay. I Will Be.

It’s a wonderful problem to have so many people in your life that are concerned for your health that it actually becomes exhausting to talk about it. I figure now is as good as time as any to give an update since I finally have some clear understanding of what my body has been going through. It started with my hip, then my shoulder and now my eyesight. The joys of being a Type 1 Diabetic.

18 months ago I started experiencing right hip pain. My mobility and strength in the leg started to suffer. Normal activities started to present challenges. Simple things like sitting cross legged were no longer possible. The pain would very from day to day ranging from 6 to 8 on a scale of 10. Driving more than 20 minutes was awful.

16 months ago I started experiencing left shoulder and bicep pain. Lifting anything up over my head was very difficult. The pain would bounce around to different locations throughout the shoulder and sleeping more than a hour or two a night was impossible. The pain, while inconsistent in its location, was always an 8 or 9 on a scale of 10. Simple tasks like putting on pants were anything but simple.

On June 25th, I started experiencing vision loss in my right eye. If I closed my left eye the entire world was a blur. Anything 8-10′ or further away from me was in focus. Anything closer than that distance was foggy and hindered by black spot. The closer the object the more difficult it was to see . My right eye was hemorrhaging…

Since all of this started back in 2013 I’ve seen more Doctors, Therapists & Specialists over the course of 18 months than most people will see in their lifetime. Five MRI’s, a few ultrasounds and countless x-rays never produced answers for the hip or the shoulder. The positive was no major damage was showing up. The negative was that everyone seemed to be at a loss as to the cause of the pain. A few friends wondered when I would be calling Dr. House. The only pain relief I was able to get was from cortisol injections. I have had 3 different injections since 2013, the last of which was given in May of this year for my shoulder. The issue was finally diagnosed correctly as Diabetic Frozen Shoulder. The injections would cause my blood sugars to elevate and take on a mind of their own for 2-3 months, but I would be able to actually get some sleep and and much needed recovery. Since I can remember I’ve always had what is considered an abnormally high tolerance for pain. From an early age I was told by Doctors that if I though about something more than 2 or 3 times, that it was time to get it looked at. The shoulder pain was beyond anything I had experienced before. The lack of sleep was destroying my body and my mind.

With the blood sugars bouncing around from injections trying to help fix my hip and shoulder, my Hemoglobin A1c tests had risen to 8.1 – 8.6%. A result of under 7% is preferred for Diabetics. A non-diabetic should have a range of 4% – 5.6%. The elevated and inconsistent sugars have resulted in my now compromised vision in my right eye. The difference in what my eyes physically looked like before the steroid injections and after is insane. You can find information on what my eye is going though by looking up Diabetic Retinopathy. Basically the vessels in the eye have started hemorrhaging. The “fix” is to have lasers shot in my eye to stop current bleeding and prevent further bleeding. It involves multiple treatments and there is no guarantee that my vision will ever return to normal. Over the last month the migraines have started to lessen (a product of having one eye in focus and one eye out of focus) and while I don’t necessarily think my vision has really improved I have started adapting. There are two more surgeries scheduled in August. I am hoping to have more answers as to recovery after those visits.

Lately it feels like my life has been taken over by the medical issues all stemming from Type 1. The hip and shoulder were likely minor injuries that most people would have healed easily from. For me it took me down this crazy medical three ring circus which while trying to fix certain issues ended up breaking something else. It ended with multiple specialists having said you’re on your own or we cut you open and my vision being compromised. Pain had become my identity and it wasn’t only physical. A day didn’t go by that I didn’t think about how much of a burden I was to the people closest to me. The harder I tried to get things under control, the worse it felt like things were getting. The only child in me started taking over and instead of asking for help I was internalizing everything. I had hit a point of feeling lost with who I was.

Ten days ago without even thinking about it, I sat down on the floor cross-legged. This one simple movement, one that I haven’t been able to do since this all started, cleared my head and let me know that it would be okay. Even if life wouldn’t be what I was used to I will make it work. I refuse to let this crap take over my life any more than it already has. I have always been a very visual person and to have that aspect of my life compromised is awful. It’s a crappy set of cards to be dealt, but I am thankful that I am still able to see. Now it’s a matter of assuming that the right eye wont get better and figuring out how to adapt. As far as the hip and shoulder go – I will keep working on getting physically stronger and eventually I will end up back doing what I love.

bruce_leeThe sun will rise and set no matter how you choose to live your life. There are way too many things out there to enjoy and it’s really hard to find that enjoyment when you’re angry at the world and feeling sorry for yourself. I will remove the useless and negative influences in my life. I will make it a point to not give a shit when someone says, “That sucks. I don’t know how you do that. I could never…” I am dealing with it because the alternative really sucks. It’s only as bad as we allow it to be. I will adapt and figure out how to continue to do the things I love. I will get stronger. I will be okay.

-Tony