I finally saw a Rheumatologist last month, and I have to say that it was a bit different than I expected. I have heard of him before, as I happen to work with his son, and was excited to find that the recent switch of Insurance providers at my place of work allowed me to see him now. Prior to the switch I had been avoiding seeing a Rheumatologist due to the nearest one that took my insurance was an hour drive. I had been in basic denial of really needing to see one, and this just made it easier to justify. As my illness has progressed, and the fact that I have yet to recover from the bronchitis I happened to acquire in February, I knew I had to suck it up and actually see this through. It is better to know exactly what I am dealing with, or at least work on finding out more about my body. Maybe then I can get more answers about how to deal with this.
When I arrived, they were all incredibly polite and professional, but in a casual way. I was not handled with “kid gloves” like my physicians, and I wondered if it was due to the fact that they are used to dealing with the elderly. As much as people would like to think that the elderly are fragile, it is generally going to only be their exterior that has so many “soft spots”. I find the elderly to be quite entertaining, and much more friendly than the average person thinks. I get along with people far beyond my years, which I chalk up to me being a young mom (Age 15 – So smart) and suffering through “elderly” diseases starting at 26. I had my vitals checked, and a quick exam which caught a temp of 99.9 – Which is my temp almost EVERY time I go to the Dr. I run an elevated temp daily, and had to tell her it was ok and normal for me. She seemed both amused and concerned that I was so nonchalant about a temp that generally implies some kind of virus. Autoimmune illnesses are fun. Sudden fatigue and constant fluctuation in temp. WAHOO!!
Since I had injured myself just a few days before, I was limping around with a colorful sock over my not so sexy bandaged ankle. This did not go unnoticed by my Rheumy, but he just laughed it off after I told him I got into a fight with a small rock, and the rock won. “I fought a rock and the rock won.” He introduced himself, and we started in with the casual conversation about my process it took to get to him. The wall I initially hit after eating lunch one day nearly three years ago. Being bed ridden for a solid week, and running a temp of 99.9 for three months straight, no break even with meds. The physician, gynecologist, orthopedic surgeon, gastroenterologist, the works. Surgeries, tests, missed work, symptoms, medications, MORE medications, MORE symptoms, etc. He sat and listened to all of my woes, and asked questions as I went. He went further and further into my history, asking questions I hadn’t even thought of. How many bones I broke, if I had ever been limited physically for any reason before I got sick, and other random things. Oddly enough, he made me realize that I had been systematic for YEARS before I even hit that wall, but I wrote it off as other issues. It easily could have been other issues, and wasn’t necessarily something to be alarmed about, but once it started to randomly cripple me I should have looked over my personal health history much deeper. Well, a little late for that but at least we are doing this now.
He left the room to allow me to change into to a hospital down, and when he returned started the exam. He checked some pain points in my arms, checked the movement of my joints, extremities, etc. He winced in certain places, letting him know the level of pain, but when he got to my back I couldn’t help by cry out when he pushed closer to the small of my back. I have a large area there that can get incredibly sore when I am having a flare. Still having symptoms from bronchitis and having a torn ligament in my ankle had caused this area to go haywire! He ended the exam short, and ordered quite a few xrays, ultrasounds and other tests. He told me that he can confirm the rheumatoid symptoms, as well as the fibromyalgia. He wanted to likely change my treatment, but wanted to wait until all the tests came back. He was concerned I might have some disc issues in my spine which could be causing the back pain. Then again, it could be fibro, but generally if it’s that I would have the severe pain across all my pain points and not just in the back. We would have to wait to find out, but in the meantime try to be nice to my body… and steer clear of small rocks. Who knows what might happen. LOL
Let’s fast forward to the follow up that occurred three weeks later. Wander in about 15 minutes early. Temp taken: Only 98.9 this time. Sweeeeeet. Not really having a flare up, as my ankle is mostly healed with just a few pains here and there. Bronchitis still hanging around, but mostly just an ugly cough and some breathing troubles. The weather here has been so flaky that I doubt I will be clear of this mess any time soon. This time I waited in the exam room for about 25 minutes, and I just assumed that he hadn’t really looked over my results yet. I had looked over them multiple times in my online interactive office. I read through my bloodwork, but my xrays and ultrasounds were not available to view. In my bloodwork there was indication of high inflammation, which I found weird because I was on Meloxicam. This is a high does of anti-inflammatory and should keep it under wraps, and definitely not outside of the safe zone. Then again, bodies like mine like to be assholes and do whatever they want, which includes getting inflamed for no REAL justified reason. Thanks, body.
Going over the xrays he showed me where I was having issues. Both hands have just begun to really feel the effects of the rheumatoid. Both pinky fingers and ring fingers have lost all joint space between the bones. The pain in my arms and hands can be accounted for there. My thumb, pointer, and middle fingers are actually being effected by osteoarthritis, and are not really showing signs of ra yet. He showed me on both the xray and a chart what the differences were, and though at the time I could spot them with his guidance, I can’t tell the difference now. I am sure as time goes on and I monitor my TWO different kinds of arthritis I will learn to spot the differences on an xray. For now, I have been trying to practice on Google images and try to educate myself. As per my back, the discs are firmly in place, though I have a very strong arch. Most people have a mostly straight spine, with a few very natural curves like a very soft curved road. Mine on the other hand is mostly normal, until you get to the waist area. At that point my spine curves slightly right, in and then back out like a loose backwards C. You can see exactly where I broke my tail bone as a child, and really explains why I can’t get rid of my big butt. Apparently this isn’t an issue, as all my disks are still in place, but mixed with my DD breasts it can cause quite the back pain. However, not the back pain I am experiencing. That is ALL fibro, baby!
We went over pockets of fluids in my arms, knees, and other areas of concern. Shots that will get rid of them slowly, and medication changes that will also help. Changing from meloxicam over to generic Voltaren 75mg twice daily for the inflammation. He would like to steer clear of steroids for now, as I tend to have the worst reactions to medications. This one is going to be softer on my lower intestines, and should help with both the fibro and the arthritis. Once we addressed all my illness issues, he brought the xray of my neck to attention. Not only was my neck too straight, it actually curved in the wrong direction. The supporting ligaments had been damaged, and the disks between the bones were almost completely gone. The disc between the C7 and T1 was obliterated. Done for. Gone. He started asking me about accidents I may have been in… care wrecks, other things. I looked away like I was thinking, and kept telling him I had never been in an accident. He danced around the subject asking if I had ever taken a hard fall and hit my head, or anything else. I sighed and finally said, “I was in an abusive marriage.” We went on to talk about the blows to the head, the concussions, and other things that could have destroyed my neck the way it was. He apologized for pushing me to talk about it, but it was medically important to know what happened to cause the injury. He said based on my xrays he had assumed abuse, but did not want to push the subject in case he was wrong. I figured he saw the broken collar bone, and ribs. The issues that arose from being married to such a big man. We went over the treatment of heat every night, continue with my muscle relaxer but taking it nightly until we get the swelling down, and see what it does for me. The new meds for the arthritis would help with my neck as well, but I will never be able to fix my neck without surgery. He closed the conversation with, “It is a good thing you divorced him, and such a shame that he left you with something to remember him by.”
After getting the shots in my arm, and almost FACE planting while getting out of the chair, I went back to work. The feeling of relief, pain, and hope was overwhelming. I kept thinking about how it is good to know what is going on, but upset that what I went through in my marriage really did destroy parts of me inside and out. Literally. Emotionally as well. I tried not to think about it, and just focus on what I was going to do with the new information. New treatment, new hope, and another appointment a month from now to follow up. I learned nothing new about my knees, but felt much more educated on my body in general. Now I know what is going on in the places that hurt, and I begun going through it in my mind.
Feet: Rheumatoid arthritis
Knees: Osteo and rheumatoid arthritis. No cartilage from damage. Fluid pockets. Inflammation.
Abdominal pain: Celiac, and ovarian cysts. Inflammation from both.
Back pain: Spine curve.. big boobs. Yay. No inflammation.
Neck pain: Damaged to the ligaments and discs. Little to no inflammation.
Shoulder and upper arm pains: Damage to the right from injury, fluid pockets and inflammation.
Elbows: Irritation from both the shoulders and the hands. No inflammation.
Hands: Osteoarthritis and rheumatoid arthritis. Inflammation.
Jaw: TMJ. No inflammation. Possibly from Fibro.
Full body muscle/muskoskelital pain: Fibromyalgia
Stomach ache: Gastrointestinal damage.
Bleeding from anus: Colon and lower intestinal ulcers and internal hemorrhoids.
Going through all of my body, and my daily pains I was brought back to realize how miserable I really am. I often feel bad for being so inactive and feel so lazy! Being reminded that I actually am sick, and I really do need to rest myself until we figure this out. I need to count my spoons and stick with them! Pushing myself only makes it worse, and can prevent me from actually doing the things I need to do for myself AND my family. People who end up with chronic illnesses are often left feeling guilty, and need to find a way to cope. We can’t help but watch others walk around, enjoying their bodies, and end up feeling both jealous and resentful. I tend to go back and forth from “I GOT THIS SHIT!” to the “What is wrong with me, why can’t I handle this?”. Though it may seem like such a bi-polar way to look at things I have come to realize that it really is natural, and I really will always be this way. Now, will I always be on the low side of my roller coaster? No. No way. Sometimes the roller coaster may even stop on a high point, and I will get to enjoy and consume the wonders of the world with a big grin on my face! But I am never going to get off this roller coaster. It is my life now, and it is what I have to deal with.
Getting more info on your illnesses are really both enlightening and pleasing, as well as hurtful and depressing. Knowing my hands are just going to get worse, and my body is going to slowly break down is not fun. Knowing how to slow the process, and take care of myself so I can handle and live with my disabilities is a good thing… but I don’t want to do it. I WILL, mind you, but I don’t want to. I don’t want to try new meds and have to learn and handle the side effects. I don’t want to have to remember that my headaches and neck pain are from a man I left a little less than 10 years ago, and that I will always deal with it. I can lessen the pain, and help with the inflammation, but it will never go away. Once again, told I am sick forever at age 29. Three years in. Single mother of 3 girls. Full time working mom. Sick. Forever.
Well… now I REALLY know, right? *sigh*