Scene One:
This morning as I was sitting at my island drinking coffee and wondering how my life has progressed to this, and by this, I mean what I am living. Over the past few years I've had a lot of tears over this made for TV movie life. I mean more of a made for TV reality show. Through all the tears there have been many laughs too. For example, I'll use yesterday. I honesty haven't combed or cut my cats nails since January. I'm not proud of that but its the truth. After many days of this Sunday ended up being the day Sunday. May sound like not a big deal to someone leading a fairly normal life without many physical limitations but for me its like a mountain. I grabbed all the tools, sat in the chair, and told Rich this is it. He held the kitties down while their nails were trimmed and that went well. One thing down and one thing left the combing. I sat back in the chair and said to Rich, "Now I have to get on the floor." Of course him in his usual fashion, "You can do it." So I did it. If this was a movie this was when the audience would either chuckle or laugh. I rolled out of the chair and landed on bertha. Ah, I made it. I was reluctant to tell him, "Ya, I know I can make it down but then I have to get back up." Chuckling to myself thinking this isn't going to be pretty as I combed mounds of fur out of my kitties. Crap, now its time to get up. Mind you I did get on the floor a month or so ago when I was home alone. I got on my knees to get up and I was dismayed. "What the heck am I going to do to get up?" I looked around the room and tried to figure something out until I decided to just pull myself up. You see when your knees are so bad and your feet are painful little things like this can be big issues. Laughing the whole time and talking to the dogs I managed to roll myself onto the couch. Out of breath from the weight gain, which has also tormented me, I laid on the couch laughing while the dogs licked my face to death. The big finish. When I think about it its pretty amazing how you can entertain yourself when you are alone. My therapists, known as Eva and Ella, apparently agreed. I'm happy to say at least I accomplished one thing on Sunday and the cats are good for a month or two. Rich got behind me and helped me up and we didn't even laugh. Success!
Scene two:
The few years have been brutal to say the least. My feet have been a problem for years. I have told my Rheumatologists about them and all I ever got was deer in the headlights looks. I thought they knew about arthritis? Just very confusing to me. I know my medical history is extensive but come on that doesn't make me stupid. When you can visually see huge balls on the top of someones feet and they complain about excruciating pain wouldn't that set something off in at least one doctors brain to take xrays? Finally I got to the point where the pain affecting everything. Walking was getting impossible. I knew something was terribly wrong. I finally made an appointment with my PCP's PA and she was dumbfounded. She thought maybe the large balls were ganglion cysts so I was hopeful, finally someone is believing me. She immediately sent me to a foot doc. Xrays were taken and he said I had severe arthritis in my left foot and moderate in my right. Finally another doctor who understood what a relief. We had to jump through all the hoops. Injections that worked on my right foot but did nothing for the left. By this time the pain was so bad I could hardly stand it. I tried the more expensive shoes and inserts recommended. No help. All hoops failed so are you convinced insurance that I need some real help? Surgery was scheduled. In January Dr Buchanan opened me up and was more surprised at what he found. He knew it was bad but he said when he got in there it was a mess. He cleaned it all out and put three plates and fourteen screws in. He said the cartilage was gray and there was a yellow fluid in there that he took out. He validated all my severe pain and said he knew I had been in severe pain. I was so relieved after surgery. It was done now I could start returning to life. Not so fast. Six weeks no weight/walking on that left foot. I thought no problem I can do that. Wow what a ride that was. I found muscles I never knew I had and had to take valium to sleep. Ever go to the bathroom with one leg? Ever take a shower with one leg? No details but I am thankful more than ever for Rich. He was and is absolutely the best caregiver anyone could ever want. It was like he could read my mind. I guess he learned from me because a year before this fiasco he broke two ribs and had to have surgery. It was just awful but we made it through that and we will make it through this. I am still in pain, the foot is still swollen and I'm still using my walker at home and a cane when going out. I try to push myself. Mentally I am feeling much more myself with my positive attitude but there are still days I cry more than I ever have. I cry more because I can't see my family like I would or like I use to. Talk about excruciating pain. I won't even go there. Better days ahead on this front too!
Scene Three:
I knew I left something out of the first and second scene. My knees. I began having knee pain years ago. My first two Rheumatologists always tried to help me. The second was a master. I just loved him. He would come in the exam room and know by looking at me what was going on. I was truly heart broken when he left. He would be a hard on to replace and I never have. In 2016 my right knee began swelling more and more it was so tight I could hardly walk on it. He did an ultrasound and found a baker's cyst. He drained it and injected me with sweet meds that took the pain away, not a cure but relief. Since then I have had steroid injections that have helped. In the blink of an eye 2019 arrived. My left knee went berserk on me. Like the snap of the finger excruciating pain once again. Tears. Yes tears it was so bad. I couldn't put any weight on it without crying. It was the worst pain I had experienced from my arthritis as of yet. What should I do? If I go to the ER they will send me home and say call your rheumatologist. Of course I called my rheumatologist after a week of pain. It took a week because I was hoping the pain would go away as fast as it came on. It didn't so oral steroids. Absolutely no help what so ever. Called back and she put me on a higher dose for longer, absolutely no help. Called back again a few weeks later and she said come in for steroid injection but I can't get in for a week. Unacceptable looking back. I looked forward to that injection the whole week and the day before she cancelled. No reason just said not necessary. What?? I knew in that moment it was time to find a new rheumatologist. I ended up looking up orthopedics and found there was a urgent care ortho so I called and went in that day for an injection. Mind you this had been over two months of getting the run a round. The PA I saw at the urgent care was shocked I hadn't seen a doc and was in this much pain. The MRI showed arthritis and over time It began to feel better. Weeks of therapy too. I have been on a regular schedule every three months since having steroid injections since then. A month before my foot surgery guess what left knee went carzy on me once again. I couldn't put weight on it without that excruciating pain. Back to the urgent care. I got an injection and I have a brace. The brace made it worse so back for a different one. I also got one for the right knee that was starting to get stiffer. I had the foot surgery and the plan was that hopefully with the injection and six weeks of no weight on the left leg the knee would get better. Wrong. I started walking and the more weight I able to put on the foot also meant more weight on the knee. Both knees at this time have been stiff, walking is hard, steps the worst. This horror story continues. I was referred to a knee doc and he and I were not a good fit at all. First he comes through the door like Kremer on Seinfeld and scared the crap out of me. No knock or hi. I lost my total train of thought when he said,"Are you sure this isn't foot pain and not your knee?" Dumbfounded I didn't know what to say but I did manage to say no this is not my foot. He said, "Your xrays look pretty good." That's funny because that's not what I've been told. He ordered a MRI but I was done at that point. Thinking to myself no you won't be seeing me back in this office @**$%#!. I have decided after my last rheumatologist that I will not stay with any doctor who questions me in any manner that isn't professional or isn't treating my illness as it should be treated. Yes I have that extensive medical history but I am still a person. Yes I see a lot of doctors but I suffer and need help. So see ya later buddy. I called my PCP had her order the MRI instead of using his order. Talked to my daughter who works as a nurse in a surgery center and she gave me the name of her knee guy so this Friday hello Dr Hop. I had the MRI and this time on top of the progressing arthritis in all three compartments of the knee I have a large torn meniscus, a large joint effusion which is a fancy way of saying fluid, and a large bakers cyst. I believe this was the issue back in 2019 which was never addressed correctly. Exact pain and exact agony. This Friday may be the beginning of scene five in my made for TV reality show/movie. I am both nervous and optimistic. Could this finally be the right doctor to get my knee(s) back on track? Hoping he will find out what is going on with my right one too.
Scene Four: (The Best Scent)
HOPE! The one thing I'll never lose. Yes there are days I want it all to end but then I remember my babies faces. I remember a man who is so selfless and would take my pain if he could. I remember my kids and the people who love me and check in on me daily. The pictures, videos, and Facetimes from my kids and grands. The friend who is like a diamond in the rough texting me all the time even though we can't see each other. The hope of meeting up with other dear friends soon. The hope that can be all but gone and then the spark that is ignited in their love. In their eyes. In their smiles. Grands asking when they can see me and that they miss me. Oh my heart. It makes scene four so much easier to deal with than scene one, two, and three. Love really does heal all, at least for me.
God Bless!
Dianne
