March 2019 - More health problems, disability update

I'm sorry to be negative but my life is so miserable. I try to be a positive person and make the best of things but I just can't catch a break. The last few months have been horrible and I finally got a date for my disability appeal and but it looks like the judge that was assigned has a record of approving fewer request then the state and national average. By nearly 10%. I'm sure he will look at me, my education, and my age and just make a decision there. I'm under 50 and used to be intelligent. Now I can't keep my thoughts straight half the time, my memory is garbage, I barely have relationships left with anyone, and spend my life miserable laying in bed. I had everything going for me before and I was on such a positive upward trajectory in my career and then the original injury happened in 2010 and you can pretty much see just from my resume that my work and career hit the toilet. Believe me, I would much rather be able to do any kind of work and add value to the world if I could. That's enough of me feeling sorry for myself as there are people out there that suffer a lot wo then I am. Unless, of course, my disability gets denied and I end up homeless laying on the ground somewhere.

As far as what's happened the last couple months, I ended up having an infection from the surgery and the wound wouldn't close but after antibiotics and such, it finally did. I started getting infusions again from a local clinic because it is less expensive but still beyond what I can really afford. On top of that, they don't use versed so they are unable to actually achieve a high enough dosage of ketamine to be helpful. The other option is to go through my pain clinic where they can do that however they refused to prescribed the nasal ketamine spray. There's just no winning.

I'm not sure if my body is shutting down or all the side effects from the medications are growing too severe but I ended up in the emergency room twice due to insanely bad stomach pain and again, compliments of people that abused opiates, the emergency room wouldn't even show the compassion to make me comfortable. They did the absolute basics with a blood test and kicked me out the door. I felt like I was going to die. We ended up doing all sorts of tests and everything came back negative so who knows. This month, my problems are more related to prostatitis or my urinary system and some sort because it feels like I have a UTI but also have terrible cold sweats and all I can do is lay in a ball in my bed. That part is nothing really new but it's just more misery in addition to my feet. This is also setting off the coccydynia which is the horrible aching pain in my tailbone.

Hopefully things get better and I can at least try to distract myself with TV or something.

With all my posts, please disregard typos or words that come across weird because I use voice to text. I do my best reviewing everything before I post but it all takes so long. I do hope the information is helpful for others as they make their decisions regarding surgery and such. Best of luck.

Here's how my feet look today. You can see how bad my toes are clawing on my right foot.

January 2019 - More surgeries, disability pursuit, new stimulator

It's been a long time since I last posted so figure I'm overdue for an update.

I had a really big surgery on my right foot in September of 2017. Took about four hours in the OR. The doctor ended up doing four or five different osteotomies throughout my foot and ankle. Pins, screws, plates, etc. The surgery was quite successful as my foot no longer flops over to the side and is relatively stable. On the flip side, my mobility of the joints has become quite limited and my big toe can move even less after losing another tendon. I was in the hospital for about 10 days after the surgery for pain control. Regular opiates just don't have much benefit so they had to put me on a ketamine drip in order to hopefully control the pain. They had me on 14 milliliters or whatever the unit of measurement is but it wasn't helping and the next level would be 21 and they said I would have to go into the ICU if they went that high. I was afraid of what that cost would be so I just suffered instead. As with my other times in the hospital, since they no longer allow your own pain doctors to come in and they don't have a team available to help people in my kind of position, there were hours and hours between any changes in medications or any potential health. It is so ridiculous.

Had additional ketamine infusions but unfortunately, they are not very effective anymore. The only thing that really helps is the nasal ketamine spray but due to easy way for it to be abused, fewer doctors are prescribing it so now people like myself that really need it can't get it. Wonderful.

My disability request was denied. my attorney said it was the blanket denial that they send everybody and due to my age and such, they probably didn't even really look at everything. I have run out of money and now and pulling from my 401k trying to survive. We filed an appeal immediately in may of 2018 and are still waiting to get a trial date assigned. Even if I do win my case, it will take months for any type of payment so I don't know if I will be able to survive. Great system we have going on here.

While waiting for social security disability, I was able to secure help through the state and county bridge card system - food stamps. We also requested financial assistance and was denied because they say I am not disabled. This is very concerning as anyone that looks at my charts or meets me realizes that I am indeed disabled.

I was finally able to get the new dorsal root ganglion stimulator put in. In line with my usual luck, one of the leads migrated within the first month and when the doctor went in to fix it, he encountered too much scar tissue and was not able to get the lead in position. Now we are waiting for the FDA to approve paddle leads that provide better coverage over the nerve. Nobody has a clue of how long it will take to get approved.

Although the last big surgery on my right foot was successful, I started to get a lot of pain in the back of the heel, the bottom of the Achilles, and on the right side of the heel. This is almost identical to what happened with my other foot. Surgery was scheduled at University of Michigan metro health in Grand Rapids. This is the first time I've had surgery there and I was absolutely floored by how much better it is than the other hospitals. You could tell that the nurses actually care as opposed to just doing their job and whenever an issue arose with my pain control, they would have someone from anesthesia come up with in 20 minutes as opposed to 24 hours at the other hospitals. I will never have surgery anywhere else again. Anyway, I got the usual nerve block but it was only partial effective and it turns out they only blocked one of the two nerves which covers the outside of my foot and my heel. Had medication strength issues because they always have to start at the smallest dosage and work up. Half a milligram of Dilaudid does nothing for me. I finally was able to get them to increase it to 2 mg the second day but even this was ineffective. I need at least 3 mg it's not four but they won't go that high. They did put me on a ketamine drip and it was on level 14. I'm guessing that's milliliters or something. It was not effective at all because of all the infusions I had before I have developed a tolerance to ketamine now. They eventually increased it to 21 and that still wasn't effective so they put it up to 42 and then I finally started getting relief. The difference here verses when I was at the other hospital is they didn't require me to go to ICU at such a high dosage. I was in the hospital from Friday until Tuesday and now home and even though it's been almost two weeks, still having a lot of pain and I looked at the wound and it's still bleeding.

I've probably missed out on some problems or surgeries that I don't remember because there's been so many. I'm sure I will need to have my toes on my right foot fixed at some point because they continue to claw but I'm really not looking forward to that surgery.

One last thing, all of this crap with junkies od'ing on heroin and the news and people bundling people like myself into the same group as people doing heroin is making it incredibly difficult to get medications. I don't know why the insurance company feels like they should be able to regulate what my doctor has prescribed. I am having a constant battle with them over the level of pain medications I am on and trying to get them to pay for stuff. I have never abused my pain medicine and should not be punished because of other people doing stupid things. it is not the only tool to help control pain but it is an important piece of the puzzle.