I became slightly desperate for spring water tonight, so I went downstairs to the "guinea fridge". I didn't find the water, but did find 2 boxes of unopened Avonex! This is an indication of 2 things.
1) That I have been well trained by my husband not to go into the garage.
2) That I'm perfectly justified in having my husband committed for treatment of OCD. I stopped using Avonex in 2006. :::crickets chirp:::
If anyone's wondering about the term "guinea fridge", it's the refrigerator we have out in the garage that houses my husband's water bottles and the occasional 5 year old frozen Hungry Man tv dinner. In case of emergency...open freezer door to access Salisbury Steak. I didn't coin the phrase. Urban dictionary did.
Seeing the Avonex brought back the memories of the 6 months I fumbled, stumbled, and bumbled my way through taking it. Yes, I received an instructional video. Yes, I was offered training by a real nurse. Did I take the help? No way. Not my style. I'm not the "read the directions" kind of gal! I'm the "I got this" gal! And I didn't "got this" when it came to injecting myself. But I have memories I can share. We can laugh together, right?
I remember how dramatic it was to sit and watch the video. And the diagrammed areas in which I could inject. I chose thighs over stomach and ruled out buttocks after I failed to reach around properly. I mean, I nailed myself with the needle and all? I just couldn't figure out how to push the little plunger. Awkward...
My husband was not willing to help me and don't mistake this sentence for me coming down on him...I'm not. Some of us are cut out for things like this and some of us aren't. I was thankful for his honesty. Part of it was that he knew of my aversion/phobia of needles. During my pregnancies, my negative blood type earned me rhogam shots. And tests. Shots. Labs. You know how it goes when you're expecting. Pin cushion time. When it was time for my c-section, the nurse was trying her heart out to anchor the IV. She tried the typical spot...crease of arm. No luck. Wrist? No. Hand? Fail. Other hand? Nope. Other wrist? Eh eh. By that time, I was sweating profusely and...swearing profusely and...I said, "I think this would be less painful if you used a BUTTER KNIFE!!! GET SOMEBODY ELSE IN HERE!" In came the pinch nurse, who nailed the opposite arm in .02 seconds flat. Time for the epidural block for surgery. 6 tries later, as I was nearly vomiting from the pain, I told my husband I refused to have our baby. Get them all away from me. On the 7th needle shove, by golly, the guy got it. Hate needles. Hate.
On my 1st neuro appointment, my doctor said, "you're young, you have 2 small children, you need to do this (take Avonex) for them." So I did. I'll do anything you want me to when it comes to my kids. I iced my thigh beforehand. First shot down, what I thought was a lifetime to go. Felt like a sledgehammer hit me in the thigh for the next day or two, and my body felt as if it was hit by a large automobile. Icing was so not the right thing to do! By a month or so into the meds, I was feeling the side effects throughout the week, not just a day or two. The large automobile morphed into a semi. But I was doing it for my kids. Literally.
I used to take their Christmas picture to the bathroom with me. I'd stare at it in a "this one's for you" manner...tears running down my face as I jammed the needle into the thigh du jour. Or however you say "of the week". Du week. Tried as many different methods of injecting as I could think of, but all I felt was stinging pain...and a full week's worth of feeling completely and utterly horrendous. On one occasion, I hit an artery and blood came squirting out of my thigh. I collapsed in fear, afraid I'd just killed myself. My neuro chuckled when I called her cell and said, "oh my God! I just tried to give myself a shot and I'm bleeding out! Should I get myself to the hospital?" This woman should get a medal for enduring me. Seriously. But she wasn't giggling for long, once it became apparent that my condition was worsening slowly but surely.
Six month check...I didn't do so well with the usual tests. My sight was worse, my reflexes were off, and I had a great deal of pain all over. She prescribed an MRI that showed new lesions, and they were active buggers. A blood test revealed...my liver didn't appreciate Avonex. A big ol' "D/C" went on my chart in red. Discontinue, baby. Discontinue.
"Only about 2% of the MS population reacts negatively to Avonex, Tina..."
Let me introduce myself. I'm 2%.
The decision was then mine. I chose "change diet drastically, stop doing things I shouldn't be doing, do my best to live life in the highest quality, and above all else...pray fervently".
Part of me wants another MRI. The most recent one I've got is a brain scan that was done about 6 months after the one that showed Avonex kickin' my tail. It showed a reduction in lesion load, and my largest lesion (4mm) was barely visible on that scan. Another part of me doesn't want the scan, because I just want to keep on keepin' on. I still have ms, that I'm sure of. And I'm a failure when it comes to traditional treatments, so it's not as if it would lead me to another option. I even failed natural supplements. Maybe it was the fact that I was taking approximately 32 pills a day? Nah! Couldn't be!
So this is me. 2%. A medicinal failure. A supplement failure. I am 100%...fully...completely...in God's hands. God and a gluten-free diet. And a lot of coffee. Cheesecake, too. I think cheesecake has healing properties...
"The Lord is with me; I will not be afraid...The Lord is with me; He is my helper." Psalms 118:6-7