I’ve been putting off sharing this for well, months. I guess to me sharing this with the world makes it more official then the injections, weird I know! So here goes it…
Most people know me as someone who is always happy… But I want to be real with you. Social Media is probably how most of you know me. With my career I get to meet lots of new faces on instagram and facebook and I love that, but social media is my highlight reel. I try to be positive and keep the hurt and sadness to myself. Ask anyone, that is how I always am. I build a pretty big wall around my emotions and rarely let people in. Which again is why this is weird, BUT I feel like I need to share this, especially before I head to Ohio for my company’s convention. Thats been my biggest fear, how will I feel while I’m at the biggest event thus far in my career? Will I be too exhausted and in too much pain to enjoy it? Fear for sure..
Lets back it up a bit…. Over 2 years ago I began the whirlwind journey of trying to figure out what was wrong with me. I always felt sick. Like a sick you couldn’t figure out what it was. I brushed it under the rug because I was busy. Keeping busy keeps my worries away 🙂 When it finally got to the point of struggling to walk standing straight from my bed to the bathroom I knew it was time to try to figure it out. I felt like I was 90 years old.
I went to all the Dr.’s, like all of them. Naturopathic, General Dr, Endocrinologist, another Naturopathic, and back to my general Dr. The one who did blood test after blood test to find out what was wrong. So during my journey of Dr.’s I have been diagnosed with quite the laundry list: Epstein Bar Syndrome, Hyperthyroidism, Hypothyroidism, Hoshimotos Disease, Goiter, Adrenal Gland Depletion. I’ve been on different meds, had my blood drawn on the regular, had ultrasounds on my neck…. I did it all, and I didn’t get any relief. So I did what I probably shouldn’t of done, I quit taking all the meds. I did this for a while and it was ok, then got worse.
Throughout all these years and Dr.’s I had a weird rash on my hand, right by my ring finger. One Dr. told me I was allergic to my ring…. so I went in got it re coated and bonded together. At this point I couldn’t even wear it. Not only have I gained 25lbs, but my fingers would always swell instantly. But then it got worse. I think my realization point was this rash moving to under my eyes and seeing a Humira commercial on TV . It Scared me. After all these years this could be it, I called my Dr. the next day and made an appointment. Sadly, my Dr knew this is what is was when I went in. At this point my weird rash was also on my neck, under my eyes, eyelids, in my nose, on one foot and one hand. Is it just me or did this escalate quickly?!?
1st Dr appointment for this meant trying everything else before submitting application to Humira. If you aren’t familiar with Humira, don’t watch the commercial. The side effects are HORRIBLE. For some odd reason its the only commercial Kalispell local TV plays! So Steroid shot, lots of different creams and a power dose of prednisone. And relief!!! Well for a quick minute, then it was back. And I was back at the Dr. And then came the news. We’ve tried everything and I really didn’t want it to be this but it is.. You are 35 and you have Psoriatic Arthritis. Wow. So in true Lisa fashion I held it together til I got to the car. That poor Escalade has seen way too many tears!
Psoriatic Arthritis. It sucks. I know there are way way worse diseases people have but I don’t wish this upon anyone else. For one, there is no way I could be doing hair or lashes with my hands like this. My hands don’t work. My hand looks like strips of boiled pork sausage thats been cooked too long in the microwave. You know when it bursts and burns in the microwave? Yep thats what my hands look like, I’ll spare you the photos! Friends, always always have a Plan B! I’m not saying you need to join me at what I do, although I’d love that!! But find SOMETHING to have just in case. I’m forever grateful I did.
So now comes the unknown LONG process of getting approved. I honestly had no idea so many different people were involved for one prescription. I have my Dr.s office, My personal Humira Nurse Ambassador, Abbvie (amazing company to help with the cost). Let me just say trying to get all the info to all the right places was hard. I went to Costco on July 3 to fill my prescription. I knew it was expensive, we are self employed and have crap insurance, and you aren’t allowed to get new insurance until a certain time of the year (dumb). Lets just say I didn’t get my Prescription filled and delivered til mid August. Each injection runs around $6,000. My first day I had $12,000 of meds put in me. Thank god Abbvie is covering the costs of this! I seriously can’t believe the cost of our health care!!
I had the medication delivered to the lake property. Well lets face it you didn’t see a lot of me this summer. I felt ashamed of being sick and embarrassed of how I looked.. well still am. How am I constantly being diagnosed with another autoimmune disease? I’m 35. This isn’t right. Did I do something to myself to cause this? Yep that goes through my head ALL THE TIME. Once the big box arrived I got super hesitant to start the meds. I had joined a lot of Facebook groups for PSA and Humira. The people in these groups were miserable. They talked about all the effects the drug had on them. You aren’t just fighting the joints and skin, you are fighting much much more. The exhaustion, the joint pain, the itching, the depression, the guilt, the aniexty of the next injection or flare up, the reality this is what your life is, the constant getting sick because of the havoc this drug does on your body. I told myself I’d try this for the rest of 2019 and see if it helps. If not, plan B.
I’m so lucky to have an amazing Mother/Daughter Duo of close friends at the Lake, ones a nurse and one is a cancer survivor who had daily injections. They were a lifesaver. They did my first injections and the second injections. I’m so grateful for them! The last injection I had a home health nurse sent out from Humira to educated me. These injecitons are bi weekly, I’m not sure I’ll be able to do one myself, it hurts like hell and I’d probably pull it out!
If you have made it this far, good job!! This is a lot of rambling and tears and I’m proud of you! No wonder my insta posts are so much shorter, its a highlight! As of right now I’m not sure if this is working to make things better. I haven’t had a really bad flare up in almost 2 weeks. I’m beyond scared that flying and traveling this week is going to make it bad. The last flare up started on the kids first day of school…. I hung out in bed alllll day long. Not the life you expect for sure. I’m so thankful for all advice, love, tips and overall caring support from those of you who know what is going on. I truly appreciate it. I’m not sharing this as a pity me thing, I do not want that. All I want is you to know why sometimes I’m not myself, why I look like hell, why I’d rather be in bed then going out. Autoimmune diseases are real and they effect everyone differently for sure. I’ve heard lots of success stories from people doing vegan or the Auto Immune Diet, or Plant Paradox… so happy for you guys! As of right now, putting this medicine into my body scares me to death. I want to give it a chance without changing other stuff to see if it does anything. If it doesn’t make the cut, I’m done with the drug and plan B.
Bottom Line, Take care of your body, you only get one
xoxo lisa
Life With Lisa 