In every day life, I continue not to use my crutch, but I do take 1 crutch when I go to the football games. Those days always involve A LOT of walking (for me) – and in big crowds. I take it also as a visual marker for people to realize that I may not be able to keep up – and having that visual also allows me to use the elevators and such with no questions asked.
I’ve thought a lot about it . . Do I really need to take it with me? Eh, probably not. After all the walking I’ve never had swelling or pain, therefore I know my knee structurally is holding up just fine. But mentally it helps me a lot. And, healing is definitely a holistic event, so keeping my emotions in check and my stress level low is ESSENTIALLY!
The biggest development to come out of these 2 months is my 6 month MRI scan.
So funny story. . .
I went to get my MRI done at my favorite MRI place at the end of September. (Most people have a favorite MRI place, don’t they? JK! haha) After the scan, I asked if I could look at my films real fast. The tech wasn’t super excited about it, so I just stole a quick glance at the pictures that were up on the screen. And what I saw (or at least thought I saw) was a MAJOR improvement! I got the biggest smile on my face and left that office SO SO SOOOOO happy.
Because I always want to know exactly what’s going on, I went home and pulled my films up on my computer. I spent some time going through my last several scans, comparing the AVN. And guess what? It didn’t look any better at all . . . in fact, I actually thought my most recent scan looked the WORST out of all of them.
Going into my scan I honestly didn’t care if it showed that nothing changed. I knew there were major changes because I FEEL the difference. I’m walking, without pain! I’m not losing sleep because my leg feels like it’s on fire. I’m off all my pain meds and doing really well. Going into the scan, I told myself I wasn’t going to allow my MRI scan to dictate how I felt about how the procedure was going because I was doing AWESOME.
But if I’m honest with you, I started to feel really upset.
I knew deep down I didn’t care if there weren’t any changes, BUT having left the office thinking it looked great and then, upon further inspection, realize that it actually looked WORSE… I wasn’t too happy about it. I spent a good hour or two dwelling on it. WHAT THE HELL?! HOW COULD THIS BE?! I showed that comparison picture to my family and a few friends and they also confirmed what I was thinking – it didn’t look any better. But then my Dad talked some sense into me. He reminded me I wasn’t an MRI tech and I couldn’t read MRIs (haha! shocker?!). Based on the way I was feeling, there was no way it could look worse.
He was right. So I put it out of my mind and decided not to worry about it until I talked to my Doctor. When I talked to Dr. Pitts about my films, he started off by saying it looked 40% better! 40% BETTER? HOW SO? The films I was looking at didn’t look 40% better. And then he went on to say that at first glance, he didn’t see any changes- in fact, it may have looked a little worse. I let out a big sigh of relief, because I wasn’t crazy! He continued by saying that he and the other Docs had a pow wow and looked at a few other views. The view that I had been looking at (and that he looked at at first) showed a lot of edema in the bone. Meaning, there was lots of swelling. But, that swelling indicates healing and the bone still looks very active. So, although your best chance of regeneration is within the first 6 months, and you can still see improvements up to a year out therefore, I can anticipate a little bit more regeneration within the next few months.
My pain level from the AVN is truly nonexistent at this point. The only thing that still does bother me is my extension to flexion. My knee doesn’t bend smoothly and it makes an audible crunchy noise. Dr. Pitts said that nothing looked structurally wrong with my knee (on the MRI) – my meniscus looked good and he didn’t think it was anything to be worried about. But of course, our conversation was via the phone so he was unable to access me. He did suggest if I felt like it was something to address that I should go see a local orthopedic. Back when I was in therapy, my therapist told me that it was ok, that it was just a muscle that was tight which was causing the noise. And, because I have arthritis – osteo and autoimmune – I could anticipate never having a “normal” knee. I feel like I will make an appointment to get it checked out – even if it’s just for piece of mind!
So, what’s the plan now?
Stay the course, don’t change anything. Keep working out my knee the way I am. Weight bearing exercises are going to help with the bone regeneration, therefore I have to continue to keep moving and working on building my tolerance up. I still haven’t been walking long distances because I was on crutches for 3 1/2 years – I have to ease into it. But, I am walking more and more each month. I will get an MRI in another 6 months (so 1 year out from the procedure) to see how it’s changed. The great news is that it’s definitely getting better and not worse. That my knee is stable and I don’t have to worry about it completely collapsing. And I’m not in constant pain anymore!!!
If I would have seen Dr. Pitts in person, I probably would have kissed him because I’m so happy with how it’s been recovering. This past week, I attended the Woman’s Health Conversations in Pittsburgh and had the opportunity to talk one on one with a doctor here in Pittsburgh who performs Regenexx procedures. I had gone to their office a year ago, but they weren’t performing the bone procedures yet. In fact, the Doctor had just finished his bone training this past weekend and told me that they are going to start performing them here in Pittsburgh!
Anyways, so I was so excited to talk in person with someone about the Regenexx process. Someone who’s helping change the lives of so many people with stem cells. We talked for about an hour and I walked away mind blown. Stem cells are changing lives people! And, unfortunately, they’re not going to be covered under insurances any time soon. They truly are a game changer. I’m willing to state on record, that if stem cells were covered by insurance that the majority of joint replacements would stop, major surgeries would become less invasive and people would have better outcomes. I truly, truly truly believe that. And, because of that reason, I’m sure it’s going to take a hell of a long time for insurances to cover the procedure. Which is a real shame.
Back in February, I had to go off my Humira to get my procedure done. So how am I doing off of it?? Wheeler, I’ve been doing really, really well off of the biologics!!!
I’ve weaned off of all the medication I was on and current am on ZERO prescription drugs! I do take a grandma sized pill-box of supplements, but no prescribed medications. I had my blood work done in the summer and my inflammatory markers stayed exactly the same as they had been when I was on the Biologics weekly.
Background: to control my Psa I first started on methotrexate. I was on that for 2 months before I added the Humira bi-weekly. I took 7 methotrexate pills/weekly for 9 months and then called it quits. I know no one has a good experience on methotrexate, but I was having more bad days than good on it. So I went off of it. Then 4 months later, I switched up my biologics to taking an injection every week. I decided to do it weekly because I felt the effects of the medication wearing off midway into the second week between injections. I continued that regiment for another year. I really credit the biologics for helping me reign in my disease. Then, with the help of dietary and lifestyle changes, I was able to start to decrease me inflammation. I could have never done it without the meds. They were heaven-sent!
To be able to get the stem cell procedure, and to have it work effectively, I was cautioned to go off of my biologics. By design, biologics suppress the immune system therefore suppress the stem cells. So, I went off of it and was nervous, but excited. I felt Iike the timing was right and had I tried it any other time it wouldn’t have worked – My inflammation would have been too out of control. But! With my dietary changes, I truly started to feel even BETTER as the months went on without the biologics.
September was my 30th birthday and I won’t lie – I celebrated. I drank a lot of wine, I ate lots of gluten-free, dairy free (but not sugar-free cake). And guess what… I totally paid for it. A week after my birthday I broke out with what I’m 100% convinced is a psoriasis plaque on my forehead. I’ve never been diagnosed with psoriasis, but I’ve always had these 2 mysterious “dry patches” show up throughout my life. And they’re always in the same place – on my forehead and on my left boob. Also, I get many of them around the hair-line. My doctors always had different reasons for them. Some said it was a fungus I picked up at the gym or at the hotel. Others said it was just dry skin and it’d go away. I tried ointments, antibiotics, lotions, everything. Nothing makes them go away. Nothing. And this time is no exception!
Anyways, I thought it was interesting right after I went on a sugar binge I got this skin manifestation on my forehead. As October unfolded, I ended up getting a horrible virus that caused me to have double pink eye and a sinus infection. Oh, and as the virus has been dying, it’s been depositing immune cell clusters into my eyes causing them to be painful, super light-sensitive and blurry. Fun stuff.
A month after my birthday, the patch on my head seemed to maybbeeeee be going away. And I thought yay! Good. But then I realized the patch on my left boob has reappeared. Yay, noooooo :-/ damn it. I had really tried to abstain from sugar all October and I thought I was getting better than worse! The last 2 weeks I have been having knee pain, but it’s not AVN pain – it’s definitely psoriatic arthritis related. No doubt. Whenever I have red meat my knees ache and if I have more than a handful of enjoylife chocolate chips or 2 glasses of wine, sugars make my knee hurt.
I’ll admit, I’m being a bad patient at the moment. I was supposed to get blood work done in September, but forgot. I was going to get it done in October, but the last few weeks I’ve been so sick and I knew that with my virus my inflammation would be up therefore getting my blood tested wouldn’t be a realistic reflection of my PSA. Ok, so now that I’m writing this out there and being held accountable, I’m making it a priority to get my blood checked within the next week.
So long story short. I was doing really, really well off my biologics, but the last month I’ve broken out in a little bit of what I believe are psoriasis patches and my knee has been hurting. This is horrible timing too because the holiday season is coming up and I’m going to want to cheat on my diet (cheating meaning eating some sugar). I’m going to have to go super strict again with abstaining from sugar – even natural sugars. That’s the only thing I always seem to cheat with – you’ll NEVER see me put a piece off gluten or dairy in my mouth, but sugar and rice I do tend to “cheat” with. This is the perfect example of why I have to keep a strict diet. Not because of anything other than it makes me feel sick 🙁 But, despite the little bit of pain and the patches, I’m doing really really well. My fatigue has been basically nonexistent and so has my pain.
All in all, I couldn’t be happier with the way things are going!!!!!! Thank you for your continued prayers and your support. It means the world to me 🙂 Especially when I go places and people see me without my crutches. It’s such an awesome feeling. It took me some time to get used to not having my crutch, but I’m definitely back into the swing of life sans crutch.
Wishing You A Painfree Day!