Post Op Recovery: 2 Months

Life seems like a mixed bag at the moment. There are many good things and a fair number of not so pleasant things. This disease steals your dignity so I really don’t care about what I share at this point. I may be more graphic than usual so feel free to skip this post! It’s also a rather long post so I apologize…but I find that I review these posts to track my progress so it’s reaaaaallllly helpful for me long term :P

The good stuff includes:

1. My 5th incision FINALLY closed after 2 months. Two freaking months!

2. Food! I haven’t enjoyed eating food in such a long time. I still eat pretty darn clean but I am including more variety in my meals. For ages, when/if I could eat, I would limit the meal to 1-2 ingredients and still feel miserable after eating. At this point, I can regularly include fish and a 1-2 other vegetables in a meal without feeling bad. If I add a bunch of ingredients, I don’t necessarily feel great, but I don’t feel like I have the stomach flu :P

3. Bladder. I don’t remember if I have posted many details about my bladder over the years but for the last 3 years, it has felt like I have been living with a permanent UTI (just without the burning). It has severely impacted my ability to sleep because I have to wake up 3-6 times each to go even if it’s just a tablespoon. And that’s not even counting the absurd number of times I had to go during the day! Driving back and forth to Cincinnati for work was stressful because I always had to go even if I had gone immediately before getting in the car - then if I got stuck in traffic…such misery :P Every time I had back to back meetings was stressful to because I knew there wouldn’t be time to make it to the bathroom! In public restrooms, I often feel envious of the women in the stalls next to me because they just go and go and go - like 60 seconds or more! I miss those days! During the 2nd surgery, they did a bladder resection, removed a bunch of endo from it but it never seemed to improve. Another 12 months of this went by then in July of this year, I started using CBD oil which to my surprise and delight actually helped! Instead of waking up 6 times a night, it was down to 2-3! So fast forward to this last surgery, I thought for sure there would be more endo to be removed from it, the pressure from my very angry uterus would decrease and then, in theory, this problem would improve. Unfortunately, my bladder has been angry since the surgery, and I have been steadily losing hope that it would improve. I had a bladder catheter and my bladder actually completely quit working for a while…and didn’t work for properly 7 or 8 weeks. I didn’t think it could get worse than it was before surgery, but I was totally wrong. It’s crazy how surgery screws up the “plumbing” in your body so to speak! Well in the last week or so, it seems to have started to calm down. I still need to go more frequently than normal people, but I can make it 3-5 hours at night without waking up. I had a crazy, exciting moment recently when I went and realized my bladder stream was longer than 15 seconds! It actually felt stronger, and I ran downstairs nearly in tears to tell Adam how amazing it was. That’s when you know your marriage is pretty strong - when you can laugh, cry, and hug each other over a 20 second bladder stream. It’s no where near what I’d like, but I’ll take any improvement at this point.

4. Reflux/Burping. Another sexy yet odd symptom of my version of Adenomyosis, I suppose. It started in the spring of this year (the burping part anyways) and has been really embarrassing. I walked into a store with Adam this spring, burped out of the blue and the sales clerk looked at me like I was a monster. My other symptoms are easily hidden but this random burping was uncontrollable. I could literally eat nothing and drink nothing for 12-18 hours, wake up from sleeping, and start burping. Working out (before I had to stop) was comical because I’d burp 3-5 times per minute. I’d be doing jumping jacks and burping constantly. Even after bowel prep for this last surgery, I woke up and was burping! Literally NOTHING inside my body yet the burping continued? This also continued after the surgery and was really frustrating. However, in the last 2 weeks or so, I have noticed that I am not burping as frequently nor am I having as much reflux. It’s still there but not as in your face :P So again, I’ll take the improvement even if it’s not as great as I’d like.

5. Exercise. I started doing real workouts in the last week! I started running 2 weeks ago but it’s been so cold that I haven’t wanted to. I am pathetically weak, and stuff that is typically very easy isn’t so easy. I’m not sure 35 seconds of high knees have ever been so challenging!

6. Pain. The fact that I am not experiencing 24/7 pain is still pretty unfathomable. Unfathomable.

Now for the bad…

The thing about being so sick for so long and having multiple surgeries is you REALLY want it to work. Probably more than you’ve ever wanted anything else in your entire life. You want relief. You want things to be better. You want to not work so damn hard for everything and still be miserable despite it. And then you go through with the surgery only to find things aren’t better or aren’t as good as you’d hoped, and you feel defeated yet again. Defeat is wearisome. Continual defeat despite your best efforts is a heavy burden to bear. I’m not ready to say I’m defeated at all - but I have moments where I get scared all over again.

1. Exhaustion. I feel good one day so I do a lot then the next day (or 2), I am super exhausted. I was hoping to have a reduction in Netflix binging but that may be a ways out. I’m only 2 months along so I need to remind myself to cut myself some slack.

2. Sharp Pain.I have had an increase in sharp pains in multiple areas. Some pains are a dull ache while others feel like a sharp, stabbing, hot poker stick. Some are hard to breathe through. I am not sure if this is because I am doing too much, lifting items that I shouldn’t be lifting, a sign of new adhesions (worst possibility of all!), or a combination of all.

3. Lower back pain. It’s been going on for about 2 years or so now. No amount of Physical Therapy or manual adjustments has been able to improve it. Amazingly, this was totally gone for the first 3 weeks post-op, and I was elated. Before surgery, it would generally come on after walking for 2-3 minutes and be so intense that I would actually stop walking (or walk hunched over if I had to walk). Thankfully, it’s not that intense now although it does still come on after only a few minutes of walking. It is, however, intense enough to cut my walks short or not do them at all, but I am walking upright at least ;) I really hope this is just weakness which can be rehabilitated away but I am not convinced yet.

4. Allergic Reaction. I had an allergic reaction to something during my surgery - the adhesive, the glue sutures, something. It’s hard to pin point it exactly but whatever it is? My body STILL hates it. Since the rash cleared up a couple of weeks ago, I have mad multiple new rashes break out all over my body. One week, it was on my face. Another week, it was my upper back. Last week, I had a brand new rash all over my stomach. Now I have one on my lower back. Two of the incisions actually still have a mild rash going on even. I have never had rashes like this in my entire life.

5. Menopause. Let me start this off by stating how much of a disdain I have for this part of my life. Now I realize that ALL women go through menopause and that experiencing it is not particularly special. I keep telling myself that all women go through it so I should have a better attitude about it. It’s a frustrating experience for sure but I am most definitely not alone in going through it. However, I think women generally have a slow descent into it - not this all of the sudden crap I’m dealing with. My mom didn’t go through it until her early 50s so I feel like I got the short end of the stick. My doctor said the ovaries generally wake up between 6-8 weeks, yet I’m now at 9 weeks with no signs of them waking up. I’m trying not to freak out about what this could mean but it’s hard not to. There are a ton of other problems that could develop if my ovaries are done working but one that I am particularly worried about is osteoporosis because I have a strong family history of it. I am already super clumsy and adding osteoporosis into the mix just sounds like a recipe for disaster. The hot flashes are driving me BONKERS. It’s hard to sleep…I’ve been cold my whole life so this constant flux between hot and cold is bizarre and unnerving. Again, I know that menopause is a NORMAL part of life for us women…I just wanted another 15 years to prepare for it. I have this fear I’m going to look like a 48-year-old woman by the end of the year :P

As I sit here reflecting on all of this, I am reminding myself to take note of the improvements despite the not so good stuff. Mentally, I am in a much better space and not dealing with crippling, 24/7 pain is freeing my mind up to think about other things. My body is more relaxed than it has been in eons which is a nice change of pace too. For now, still feel hopeful, but the uncertainty and the fear lurks under the surface at every twinge or every abnormal feeling. Is it coming back? Is some new symptom starting? Could the new symptom be WORSE? Is it in my head?

I have to quiet my fears and just focus on the small victories. Focus on hope. Remind myself that I’m only two months out. Celebrate the silly stuff I would probably otherwise be too embarrassed to talk about had I retained most of my dignity. Keep moving forward. You climb a mountain by putting one foot in front of another, right?