So, it’s been a few months since I’ve posted anything && a lot has happened!!
First off, I had surgery!! I had surgery on August 21st, and I am still in the healing process.
So far, it’s been a pretty good success I would say. My right arm is completely healed. I have minimal scaring, and full range of motion..
Now, the left side.. About a month into healing, I developed an abscess next to my surgical wound :( It didn’t last very long, and hasn’t came back.. But, it set the healing process back a bit. My left side is still open in some areas && I have more scar tissue on that side :/
But, on the bright side, I am feeling wonderful. I was released from physical therapy months earlier than they thought I would be. I am regaining some strength in my arms and shoulders. (Still have a very long way to go).
Another big thing that has happened.. I started Humira injections!
I took my first dose 17 days ago. The first dose was 160mg (4 injections). Before my first dose my groin was pretty bad. My thighs were extremely inflamed, and had numerous open wounds, I had sores on the top of my butt crack, the gluteal folds. I also had extremely bad acne. Like, throbbing, aching acne.
I shit you not.. The morning after I took my first round of Humira, I could notice a difference. My legs weren’t as swollen. And it only got better over the next two weeks. Within a week my thighs were drying up & the acne on my face is basically completely gone!!
The day my second round was due, my legs started getting a little inflamed & sore. I took my second dose of 80 mg (2 injections) and the next day the swelling & redness was down again. I truly believe this is working well, and I hope it continues to help.
Yes, it does lower the immune system, and I can tell it does. Each dose I’ve taken, the next day I have a slight cold. But, nothing major. As long as I take my vitamins, and stay awake from those I know are ill, I should be fine.
If anyone is interested to know more about Humira, feel free to ask. I will do my best to answer as much as I can.. I am still learning as I am only on my second dose..
Also, if anyone of you guys have tried Humira or are currently on Humira, please share you experience with me! I would love to hear someone else’s results.
I hope all you guys are doing well & aren’t hurting too much.
Has anyone looked into, or gone through radiation as a treatment for HS?
I have seen some things about radiation about being used as a treatment, and I am very interested.
If anyone has experience or information, please share!!
I am STILL waiting to hear back for a surgery date..
I have called the Surgeon’s office multiple times, asking what the status is, and each time they say there has been no update from the insurance..
I don’t know why in the world it would take so long for the insurance to make a decision..
I was told my surgery date would be mid July.. Well, here it is, mid July, and I haven’t even had a Pre Op appointment..
I am getting super restless. I am ready to get the surgeries going.
I had a rough Fourth of July week… I had some new spots appear, and they were very painful. I had to make a middle of the night trip to the ER to get a shot of Dilaudid because the sores on my butt were extremely painful. The poor ER doctor had no idea what the hell HS was.. I had to spell it at least 4 times. He simply told me he didn’t know what to do besides give me a shot of something to knock me out.. I thankfully took it. I slept all of the next day, and most of the day after, and hobbled around the weekend a little, still wasn’t feeling too great.
So far this week, I feel decent. It is extremely hot this week, so I am unable to be outside for very long, or, at all really.
I took a nasty fall last night :/ I went outside to feed my rabbits, and I stepped in a damn hole.. It turns out that even though I am constantly in pain, and I haven’t moved my armpits much in a year, it hasn’t slowed down my reflexes.. unfortunately.. As I fell, I extended my arm to try to catch me, and HOLY HELL! I literally thought I ripped my armpit in half.. I’m sure the people at the church across the street frowned upon me when they heard the profanity I was yelling.. Oh well, I don’t give a rats ass.
Well, not much else has been going on. I haven’t even logged on to Tumblr lately.
Hope everyone is doing well.
It’s been a bit since I’ve logged into Tumblr.. I just needed a break..
Since I’ve been gone… I’ve a had a few good days. But I’ve had bad ones too..
Anyone else know what that gut wrenching feeling is like, when you find a new spot the HS has spread to? Yeah.. Me too.
I now have HS closer to my waistline, on the outside & inside of the labia, the bottom of the butt crack, the back of my thighs, my gluteal fold, and at the top of the butt crack..
I could just cry.. Well, I guess I already have a little..
I’m so upset.. The HS is just everywhere.
It is such a helpless feeling to know you have absolutely no control over your own body..
I know this sounds childish.. But it just isn’t fair.
It’s not fair for me, or anyone else who has this disease. Or any other disease..
No one should have to suffer like this.. Well, unless you’re a pedophile.. Then you can rot in hell with HS for all I care..
I would sell a kidney to be able to be comfortable again..
I can’t lay, I can’t stand, and now, I can’t sit.. EVERYTHING hurts.
I’m so tired of being in pain.. There are times I wanna go lay in the street and pray someone runs me the hell over, and puts me out of my misery..
I guess this is enough whining for today..
I’ve been feeling quite down lately, but today was great!! My HS was at a minimum today, so I wasn’t too uncomfortable.
My Mother-In-Law & I drove to the city today to take my niece Chezney to the family water park.
It was much nicer than I expected! I wish I had put on waterproof dressing & wore clothes to get in the water in.
Chezney had a blast & I got to spend a wonderful afternoon with my Mother-In-Law.
After being out & about all day, I am pretty sore, but it was very worth it to have a great afternoon.
Can’t wait to go next week :)
I hope everyone is having a wonderful week as well!