This blog has been criticized in the past for being too personal, and to be honest, it was started because I couldn’t work, was too disabled to work, and I longed to be working outside, to be free, and to be healthy. My feelings and personal life were bound to leak in. And yet, somehow, creating this blog has led to many opportunities over the years.
I wanted to live with dignity. I had spent a long time working hard to receive an education, to find flexible employment, and to be creative. It’s been a slog keeping it all together. There is A LOT of ugly that I’ve had to pass through. Through it all, I’ve become stronger and wiser.
Several weeks ago my life changed in a big way. I didn’t immediately announce anything here, and it will take nearly 6 more months until we see the full changes, but I’m happy, and my body is changing.
Finally, I’ve been given the right pill to help that which ails me. It’s a new medication. “ORLADEYO® (berotralstat) is a plasma kallikrein inhibitor indicated for prophylaxis to prevent attacks of hereditary angioedema (HAE).”
So far, it’s helping me.
It is difficult to not be angry about losing so many opportunities, and to have faced challenges I failed at, and to not like what illness has done to me physically, but I ran out of anger 11 years ago.
My immunologist let me know that she’d be resubmitting a request for me to receive the new pill for my condition. It’s a very expensive treatment, and up until now, I was never ill enough for anything other than anabolic steroids and other meds that have acted like bandages.
I didn’t expect that I’d be approved immediately. Over the years, we’ve tried, and always had to resubmit, and I gave up any expectations.
So just to stay calm, I planned my trip ahead of time not knowing what would happen.
I have a blood disorder and it causes me to swell, a lot. It has wrecked havoc on my life since I was 18 but it wasn’t diagnosed until I was nearly 30. No treatments have really helped, but we were able to reach the point where I could work in horticulture more and more. This has not been easy though.
There are no savings to take a month off, but I’m working like crazy so that I can go on a plant vacation soon. Right now, I’m adjusting to the new medication and I’m walking a lot at night to process how I feel. These last few months I’ve been flooded with emotions. I’ve had a lot of medical appointments leading up to this, all in the hopes that I’d gotten worse so we could prove somehow that I needed help.
We’ve been doing this for years, and it is not a process I’d recommend. This time, though, I got help.
Overall though, I feel calm now. Swelling in all of us sets off alarm bells. I’m not dealing with that daily anymore. I’m taking one day at a time. I’m living in the present. I am enjoying a calm and quiet mind.
Each day now I’m just kind of letting things flow and I’m not pushing hard. I’m focussing on eating a large dinner so that the new pill won’t make me ill, and I’m sleeping a lot more. I am soooo tired.
I have fought so hard, and it has been a very lonely and isolating experience.
There is time up ahead to spent with my dad, I’m getting the garden under control before I leave, and I’m making plans with friends. I love and adore those who’ve been by my side for so long. They’ve helped me so much, and so often.
At work I’m paying attention to the plants, but I’m also trying to notice if there are any changes I’m experiencing that I should tell my medical team about. No one is certain how this will change my other conditions. I’m hoping my lungs are better, and that some of the circulatory issues improve, but we need to wait and see.
In the meantime, I’m trying to buy more clothing and take care of me. I don’t know what I will do next.
Spending time with the cats at home is kind of what I focus on now. I’m working so hard so I can travel and live my life, but I miss the cats a lot when I am not here.
This last weekend Felix, Alfie and I started to sort out the Seed Studio a bit for an HPSO Open Garden this next weekend. (It is Saturday and Sunday from 10-3 if you’re local.) I’m not at all ready for it, but I will do it anyway.
I seriously cannot believe that I’m at this point in my life.
I have cried so many times about not getting the medical help that I needed, and now, here I am, at 48, finally getting some help. They made the process for approval very easy and I was told that they were aware stress could cause problems for my health, and that they wanted to alleviate that.
Seems like something I would have loved to have heard for decades.
It only took 30 years, but here I am, unsure of what I’ll want to do next, but at least I have finally been given the medical opportunity I’ve waited so long for…
3 thoughts on “It Only Took 30 Years…”
Exciting news! I hope this medication gives you the life back that you have so missed! I was able to come to your last open garden, but maybe I can stop by this next time as well to say hello.
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I am so happy for you, having been following your health journey since I met you in 2014 with concern and dismay over how you couldn’t get the medication that would really help you.
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Fingers crossed that this will be the medication that makes the difference. You are doing the right thing by keeping a positive attitude and looking after yourself. Sending positive thoughts your way.
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