My appointment with the vascular doctor yesterday went how I expected – my bloodwork has consistently shown antibodies indicative of having Antiphospholipid Syndrome (APS), and he advises I stay on blood thinners* for the rest of my life. At some point, my body learned to make these antibodies that attack tissue in the body and form clots, and it’s not going to unlearn it. Ugh.
The good news is:
- I don’t have any clots in my legs – just a small location of residual scar tissue
- I can be more casual about when I wear the compression socks (he said to wear them when I am on my feet a lot or sitting in a car or on a plane for a long time)
- I just have to take pills each day for the rest of my life. No big deal. (And get my INR tested regularly.)
I am torn between being like, “ugh, for the rest of my life?” and being grateful we found this before I had a stroke.
The doctor was pleased with my weight loss and to hear how well I have been taking care of myself, so I felt validated there. And Steven was bragging to him about how diligent I have been with walking, which made me feel good!
Now, the key is consistency with my diet and lifestyle, since it has a huge affect on Warfarin (aka Coumadin). So naturally, I went to a fun build-your-own cinnamon roll place (Cinnaholic) after.
I feel relieved to know what’s going. I asked the doctor if this will ever go away, and he said no, but if I want to check I can request these blood tests every now and then to see if they are gone. Something to decide before I see the doctor again in December (I’ll will check in with him every 8-10 months).
*Coumadin or a generic Coumadin, specifically – I can’t do any others.
I am glad you feel relieved to know what is going on, even if it means you have to take the meds the rest of your life. It sounds like you are doing a lot with your lifestyle to manage this too, which is great! I find having major health reasons help with the motivation to maintain good habits (although with space for a treat like a cinnamon bun – yum! – every now and then)!
You get me! It is definitely making taking care of myself so much more purposeful, and a higher priority. Sad it comes to this, but it is what it is! And yes, always space for a treat! Everything in moderation!!!
It is nice to know for sure, but also a lot to know it’s something that you will have to deal with for the rest of your life. It’s seems like you are processing it and handling it well. I introduced my kids to cinnabon at the airport yesterday and they loved it- but I bet the build your own place was even better!
Right! I was saying to my mom yesterday, “I am not even 40! The rest of my life is a long time!” (hopefully) But it’s just a pill, and like the doctor said, that is better than a stroke.
Oooo! Of course they loved it! Gah, so so delicious, especially when they are hot and gooey and soft!
Yes, this is exactly what I have felt about my back. I’m too young to have a bad back for the rest of my life!
You are!!! How have you been feeling?
I’ve been stuck at about 50% better for awhile. I can run, but I can’t lift anything and I’m still in pain most of the time. I’m trying to decide if I want to try another steroid injection and continue spending all my free time and money at PT or if it is time for surgery.
Gah, I am so sorry! 50% is not acceptable 🙁 What would they do if you did surgery?
Well just being in normal pain instead of excruciating pain is better than no improvement I guess. The surgery would be a discectomy – they go in a snip off the herniated piece of disc. Its fairly minor surgery – but an acquaintance had the same surgery 2 months ago and got meningitis and was in a coma for 3 weeks. So that freaks me out a little!
True true! It’s just so hard because you know what it feels like to have NO pain.
Oh gosh, that would set me off too! I am sure that’s not normal at all but so scary to consider!
I’m going to take the side of glad that you found this before you had a stroke;-) But yes you are allowed to say ugh at having to take the pills. Yay that you get to be more casual with the compression socks and yum to the cinnamon roll.
That is a good side to take! Ha!
I am very excited he said I could be more casual with the socks!!! I know it looks fine but I just don’t want to wear them out with shorts!
Congrats on having a long-term solution. It doesn’t sound ideal, but, as you say, it’s much better than a stroke! And, excellent news about those compression socks.
Thank you! It is MUCH MUCH better! And yes to not having to be as diligent with the socks! I was shocked he said that!
Maybe I’ve been exposed to too many super complicated health things lately and have seen the long-term effects of strokes over the years, but taking pills every day doesn’t sound too bad to me all things considered. You might be surprised at how many people are already on some kind of maintenance medication, so another way to put what you said to your mom above is that you’ve made it to almost 40 without needing any kind of regular medication. I’m glad you caught this before anything more serious happened!
Exactly! Thank you for that perspective because it’s really not a big deal and lots of people have to take meds every day! I just need the surprise of it to wear off, which I am sure it will shortly.
I hope it does wear off soon! It sounds like you have a good care team and so much support all around you, so I hope it will feel manageable and more “normal” to you soon.
Welcome to the world of being on meds for the rest of your life! This is how it is for me, knowing I will always be on some form of anxiety meds. And while it may take some time to get used to this new normal, you do have a good perspective: they caught this BEFORE you had a stroke and you can now manage it successfully. At least you don’t have to wear the compression socks so often anymore!
Stephany! Thank you for writing this! Because I gladly take my anxiety meds and would be fine to be on them forever… is it different because I kind of made that choice?! I really appreciate that perspective from you.
How does it make YOU feel to take them every day forever?
And yes! So glad we found this and I won’t look like an idiotic with the socks this summer, ha.
I’m on the side of “Yay, you have a diagnosis and a treatment. And, you’re taking charge of your health. And, you don’t HAVE to wear the compression socks at all times!”
You’re doing all the right things – and I think your doc realized that. 🙂
Sure, daily meds suck, but, well, blood clots or a stroke would suck worse. So there’s that.
Yes! All those things! And thanks, I do feel proud of me for taking better care… of me. Ha.
Gah. Yeah. It’s scary to think about a stroke 🙁