I saw my surgeon last week and he was actually happy with the way the bones look and how they are healing. From a surgical standpoint things are great. Likely I will need at least some of my screws out of each hip (which I hadn’t planned on) due to one in each side poking into my hip flexors when flexing my hips. I don’t want to think about it at this point yet, I go back in May and see my surgeon again to talk about it. Although it causes discomfort when flexing my hips, it’s the least of my worries right now, so I plan to put it off until after summer hoping that I can build some stability back into my pelvic and hip muscles before being cut into again.
I saw my PT as well. He is happy, he sees the progress since I only go every 2-3 weeks to see him, but it’s hard for me to see. I see the visible things, like how I just started ditching my crutches for short distances the past few days (into/out of a restaurant and in/out of the YMCA where I go to walk in the water–which is now the main part of my PT since land therapy was flaring me). It takes all of my concentration to make the muscles all around my back and pelvis contract and so my pelvis only drops a little bit, but I feel like the muscles are still confused and don’t know how to work together anymore and are super weak. My pelvis has been twisted for at least 4 years now and my low back and whole pelvic area has taken a beating. For a “normal” person they would be able to bounce back much better than I, but having joint hypermobility disorder (likely EDS-just don’t feel like following through with the rheumatologist suggestion of genetic testing) my pelvis and low back feels like it has all been stretched beyond repair. Hopefully it hasn’t, but that is how it feels. Burning nerve and/or facial pain I still have (although it is better than it was 2 years ago, so that is a plus), and I’m just mentally and physically tired from it. Supposedly as I get stronger that will lessen, but I’m so sick of having it 24/7 for 3.5 years now. It takes so much mental effort to try and block out the pain signals when doing anything, cooking, sitting, having a conversation with someone, pretty much everything I do. The only time my brain is not flooded with these signals is when I am sleeping, which is why I love getting into my bed at night, and hate getting out of it in the morning. Things I used to enjoy doing and look forward to when I was normal and active years ago now cause anxiety when I have to do them. I have to weigh every thing I want to do each day and decide “how bad will it flare me” and “is it worth the flare.” I feel 35 trapped in the body of a 75 year old. (By the way, if you don’t know what EDS is, it’s Ehlers Danlos Syndrome and is a connective tissue disorder that can affect many things in the body. I have issues with many body systems, but the worst is that my joints are too loose. Basically instead of my ligaments being like “superglue” that hold and support my joints in place, mine are more like “Elmer’s glue” and don’t hold them where they should be, so muscles and fascia tighten around them trapping nerves and blood vessels as a protective response to the joint not being stabilized correctly. Affected the most on me besides my hips and pelvis are my low back, my neck, shoulder’s, feet, and hands. The cool party tricks are no longer cool when you are 35 and in constant pain).
Anyways, earlier this month I went to a women’s conference at my church for Friday night and all day Saturday. It flared me so so bad it was like I never even had surgery. I was almost 12 weeks out at the time and thought it would flare me a little but not terribly. I was so wrong about that. The week after I laid on the couch crying in misery, angry at God, angry at life, angry at these past years and how I have not been able to be and do all of the things I planned, especially when it comes to my kids. I was in a very low, dark place that I hadn’t been in for awhile now. I thought about blogging then, I should have, so people can see that although most of the time I try to be positive and look at the good that has come from these past years, there are days when I am angry, frustrated, miserable, and still depressed, and it’s at least every couple of weeks where I feel this way. Sometimes it for a day or two, sometimes when the pain is flaring me bad it can be for a week. I isolate a little from the world when I am feeling this way, anyone who deals with chronic pain I’m sure can relate, but most people I know have never dealt with chronic pain, so it’s better and easier not to try and explain to someone who has no idea about it. I used to try hard and explain, but I would just leave conversation feeling more frustrated, alone, and sad, so I don’t really try anymore. That alone keeps me drawing closer to the Lord, because I know He knows, He understands, and that He is the only one.
I had a couple of weeks where I stayed off of Facebook except for when I had notifications, and I was feeling more positive then. I want to know what’s going on in my friend’s and acquaintances lives since I live so much of my life in my house, but sometimes a picture or a post will just hit me hard and break me down mentally. I really really really still miss working out. I worked out since the time I was 13 up until over 3 years ago when I was forced to stop. Pushing my body, whether it was a class, running, biking, swimming, lifting weights, etc… was a feeling I loved! When I see a post of people working out or talking about their work outs it’s still very hard for me to absorb. Walking into the Y I try not to look into the gym and workout studio because it still at times will bring tears to my eyes. Today at the pool an elderly man started talking to me as I was walking in the shallow end, and after 15-20 minutes my muscles were telling me to stop so I told him I had to go because my body was tired. He looked at me like I was crazy because he goes and walks over 2 hours a day in the pool. I try not to compare myself to people because I have very unusual circumstances, and I know the Lord doesn’t measure us by our abilities, but it just plain sucks to not be able to do most of the things I love to do. I was so looking forward to when my kids were the ages they are now thinking about all of the fun, active things we could do with them: canoeing, swimming, hiking, playing tennis, bowling, etc… and I am just a passive bystander to everything we do now. I asked my 6 year old last night when I had some praise music blasting if he remembers when he was little mommy dancing around the kitchen being silly with him— he has absolutely no memory of it. My 8 year old has a few memories, but to my son I’ve always been a mommy in pain who can’t do anything. I try really hard not to dwell on things that I cannot change, but I’m just feeling very very discouraged lately.
I do keep pursuing my relationship with the Lord though because I find my rest there, I find joy there (even at the same time as being depressed–it’s so hard to explain), I find comfort, I find shelter, and I find peace. I see good He has brought out of this and know He will continue to bring more good as long as I follow Him. However I do allow myself to cry when I need to, to be sad and angry when I need to, and to grieve the loss of my active life as I need to, and then the Lord gives me the strength to carry on somehow. I have had so many people tell me “you’re so strong.” Let me clarify that I AM NOT strong at all, it is God who carries me each and every day. I have NO strength of my own left most of the time. Anyways, this feels like a long, rambling, not so positive post, but it’s where I am at today, I’m not perfect, I’m human and I am allowed to have bad days. I see my PT March 20th again and will check back in after then. Thank you for reading, God Bless