I know, I know!! I’ve been pretty quiet on here lately and while I do appreciate all of the messages I continue to get from so many of you…it has been kind of nice not blogging every week! Don’t get me wrong, I enjoy keeping you guys updated and this is a great way to raise awareness or reach out for prayers and support but at the same time…it seems like when I blog so often, my illness becomes the center of my life…and the more I write…the more I acknowledge and dwell on just how much damage this disease is actually doing to my body Every. Single. Day. I don’t want to fall back in to that trap of focusing on what I can’t do instead of living for what I can do!!
As far as appointments go, I haven’t had any major ones since the last time I blogged. My arm continued to get extremely bruised after the angioplasty…
but thankfully after a couple of weeks it began to heal so I didn’t need to go back to the doctor!!
I also got another eye injection today…making it only 269 more shots in my eye to go…if I live to the age of 80!😜 I know so many of you have parents and aunts or uncles and grandpas and grandmas that do these injections but to me…it still sucks!! I’m only in my very early 40’s!!😉
Today my eye had more swelling so I am back down to returning every four weeks. I don’t know why but I just can’t seem to shake it off. The shots do irritate my eye and cause some pain as he injects the medicine…my eye is usually blood shot for about a week and for some reason I always have a headache after I am done. Today, he also hit a blood vessel so they said my eye will get worse before it gets better. I’ve heard that plenty of times before so I know what’s coming and I’ll spare you any pictures!!
I did ask how my right eye was and they said that still looked great, which I am very grateful for!! So, I guess as long as I have one good right eye and one good left lung…I should be okay!😬🤣
But today while I was sitting in the waiting room…with not such a happy heart…two ladies sitting hunched over, one in her wheelchair, one with her walker, probably in their 80’s, began talking about their injections. One lady was getting an injection for the first time so the other went on to comfort her by saying it gets more tolerable the more you have it done and explained she had been getting them for about two years. Of course I kind of rolled my eyes because if I am blessed enough to become that old I will have to tell people I’ve been getting them for 40 years!!
The bitterness I have towards these shots is hard for me to swallow. And it’s silly because I have been through how many angioplasties and surgeries…so many painful experiences, yet this eye injection…it’s enough to make me want to throw in the towel!! The thought of me getting shots in my eyeball every four to five weeks for the rest of my life…ugh! I’ve told Tim on a few different occasions that it’s been a good run and enough is enough! I’m going to stop all appointments and procedures that are just prolonging my life and we’re going to run away, travel and see how long I last! Haha! No worries…I go back to Iowa City in a couple of weeks for my heart.🙄
But then their conversation turned to them both expressing gratitude for a treatment that can help prevent vision loss. They both agreed that they would do whatever it takes to make sure they can keep playing cards!!
Yep!! CARDS!! And here I am grumbling!! I have four gorgeous children that I am able to watch grow up…and this morning I was so bitter that I couldn’t even appreciate the fact that these injections are having a tremendous positive impact on my vision!!!Okay God…point noted!😉
And speaking of angioplasties, I had a memory pop up on Facebook today that made me tear up…five years ago is when my health would drastically decline…I will never forget the conversation I had with Leah that day…something for just me and her to always keep in our hearts💕💕💕
Unfortunately while the new stents held up for a little bit, this is when I began to develop new symptoms and my disease would progress and attack with a vengeance. It was such a scary and dark time for me because I thought my masses were done growing…at least that’s what the doctors had said!! It came on so fast and the next few months to follow would be filled with testing and procedures and labs all with no answers…and so many mixed emotions. I was absolutely miserable physically and emotionally and I lost focus on the Lord! I became angry and bitter…pushing so many that I loved, away…wanting to give up!
I would eventually be diagnosed with pulmonary arterial hypertension, another rare disease…caused by my first rare disease. Also with a short prognosis averaging five years…but I’ve learned not to pay any attention to those numbers!😉
This is also when I began having issues with my eyes and would go through six laser surgeries before having to result to these injections. And in the midst of all of this…Tim’s brother would be diagnosed with cancer only a few months later.
Oh…and my back to back…back surgeries just a few years later too!!! The recovery time seemed like forever!! But again, thanks to Facebook, I can also be reminded of the little things worth celebrating…
So yeah!! Am I a bundle of joy or what?? The last few years of memories filled with painful and extremely hard…and never changing seasons.
At the same time, it is refreshing because every time I have hesitated to post or blog thinking it’s too depressing…too much detail…or too “real” for others to handle…someone will message and thank me for writing a post about how they feel. My blogs are shared by a lot of you because you have told me I have expressed what so many others with this disease experience and have wanted to say themselves. I figure if what I am writing makes people feel uncomfortable then maybe I am writing something that needs to be said! The only way we will raise awareness and have a chance for a cure or even better treatment options is if we share our stories…the good…and the ugly bad!
And the ugly bad that I never thought I would get through…well God brought me through it! All these struggles are constant reminders that He will get me through the next battle…even these nasty eye injections!
So after a fun filled day of Facebook memories, I am extremely thankful that our July this year has been a good one…actually our entire summer has been going well for the most part. While I still have plenty of symptoms to fight through, I am staying busy with the kids!! We’ve had Fourth of July celebrations, time spent with our entire families and a lot of pool time …
The six of us were also able to get away to Galena for a weekend and do a little shopping while checking out some hot air balloons!!
Don’t let them fool you…they really were having a lot of fun!!And don’t even get me started on school shopping…for ASHER!! Now that will be a depressing blog come fall!!😉😩😩
And then Leah and I walked in the parade for our local Waverly Heritage Days over the weekend!! It wore me out but these little activities mean so much to me, knowing that just a few short years ago, my health was preventing me from even walking across the room!!! Have I mentioned how good God is?!
Whewwww…that’s the quick “catch up” for you!!! We’ve been busy…and I have loved every second of it!!
So while the injections are crap and the Iowa City follow ups continue to lead to angioplasties and more procedures, I am so thankful for the life I am able to enjoy in between all of the not so fun stuff.
Life is hard guys!!! You all know that though! Health issues, relationship strains, financial burdens…just to name a few…but dang, look at all of the other things in your life between the bad junk and you just might realize how blessed you truly are!
Remember, there is always something to smile about…you just have to be focused on the right things!