Wednesday, August 28, 2013

I Haven't Closed Up Shop....

I've been a little MIA on the blog and in real life lately.  I normally don't talk about this on my knitting blog, but I feel like if you are a person who takes the time to check this blog with any regularity, then you deserve an explanation (and a reassurance that I haven't abandoned you completely!)

I have a chronic health condition called Ulcerative Colitis.  It's amazing how common it is...once I was diagnosed, people came out of the woodwork telling me that they have it, or have a close friend/family member who has it, too.  It's an autoimmune condition where your body attacks healthy tissue (in this case, the large intestine), and unfortunately doctors still don't really understand why it happens, and in some cases it's tough to keep a person in remission.

Right now, I'm one of those cases.  After my diagnosis 3 years ago, it seemed like this wasn't going to be that big of a deal.  I had to go on steroids and a UC maintenance drug to get the initial flare under control,  but they worked pretty well.  Within a month, I was back to my old self.  I stayed on the maintenance medication for about a year before I realized I was allergic to it.  For months, I had progressively been feeling more and more itchy, but I was blaming the cats (did they have fleas?), then I was blaming the fibers I was knitting with (but, of course, unwilling to give any of them up!)  The allergist wasn't much help, basically telling me that the trigger could be anything or nothing at all.  Apparently the majority of people who get hives never figure out what is causing it.  But mine were getting progressively worse.  At the beginning, I could control them by taking an anti-histimine pill each day.  A couple months later, I had to take one pill in the morning and one at night to get the same result  Then as time went on, we were combining two different types of anti-histimines and I still wasn't able to keep the hives away, and would randomly wake up with my eyes swollen, or a lip, or a giant spot on one of my arms.  It wasn't until I had to be picked up in an ambulance outside my son's school at morning drop-off because my lips were swelling up and I felt like I might pass out, that I decided to go off the UC medicine to see if that helped the situation.  Within a week, the hives on my skin were completely under control using only one anti-histimine a day, and the random swelling stopped completely.  I no longer sleep with a bottle of Benadryl on my nightstand, and I don't worry if I leave home without my epi pen.

Of course, being allergic to the UC medication is not ideal.  There's one class of drugs for UC that are considered "pretty safe" and that's the one I can't take.  The next step up is immunosuppressant drugs.  And they don't work for everyone, and they often have diminishing returns as time goes on.  Plus, I have two kids and I'm around kids all the time, so to keep myself in a state of having a constantly suppressed immune system is not the most attractive offer the medical community can give me.  I knew I probably wouldn't get away with not taking maintenance medications and avoiding a flare for long, but I didn't have any other good options on the table.  I think I made it about 3 months.

So since April, I've been sick.  My flares usually begin with crushing exhaustion, a sore throat, and some GI symptoms.  This time it took 2 months for me to get to the point where I was willing to go back on the steroid medicine to get it under control.  (Always the optimist, I think, "Maybe if I give it some time, my body can kick this one on it's own!"  But...not so much.)  Because of a series of screw-ups and bad communication, I didn't get on that steroid for another full month, and by then, I was in a bad spot.  I was in Canada, so we had to cross back into New York just to get to a US pharmacy that my doctor could prescribe from.  But I was glad to finally be getting treatment and thought things would start looking up.

Unfortunately I was too far gone.  Once home, it didn't take me long to realize that something was going on in addition to the colitis flare.  I ended up in the hospital and found out I was experiencing a complication.  The tissue was too weak, the flare had gone on for too long, and I had a lot of healing to do.

There was a lot of pain associated with this complication for about 2 weeks, then I had a couple days where it seemed to be getting better.  Then on Monday the pain was back, but in a different spot.  I saw my doctor and he sent me back to the surgeon who had diagnosed the first complication.  He said that this time, he thought I had an abscess that would need surgical care.

Back to the hospital, back under anesthesia, the surgeon decided that nothing needed to be done after all.  She said the pain was still coming from the first complication.  I'm not sure I agree, but it's good to know that nothing is infected.

So, in all, I've been in the hospital 3 times in the past 3 weeks.  The remainder of the time, I am hanging out, mostly in bed.  I can't really sit, and it's difficult to stand or walk.  Because I have to mostly lay on my side or stomach, I can't really even knit.  At first I thought, "Maybe this is my big chance to do all those pattern layout updates I've been wanting to do on my older patterns!"  Then I realized that between the pain medication and the muscle relaxers I'm supposed to take, I'm not mentally able to do things like, "read words" and "write coherently" most of the time, much less edit a pattern!  Right now, I'm at the tail end of a pill cycle, so I'm pretty alert, but I won't be surprised to read over this post and find it riddled with mistakes.

So right now, life is kind of on hold.  I'm so, SO excited to send a new sweater pattern out into the world, but I've purposely waited until now to take the pattern photos because I wanted to use a location that wouldn't be just right until the end of the summer, and, obviously, not being able to walk or drive is kind of getting in the way of that.  So I hate having to delay that release.  I would love to at least be writing a blog post every few days just to keep myself busy, but, well, no life means I really have nothing to write about right now.

So if you're a healthy person, send a little gratitude into the universe for that tonight.  If you deal with a chronic illness, know that you're not alone and that you and I will both get through it.  In some ways, I'm thankful for the experiences I have had because of this illness.  It has shown me how strong I am, how willing my husband is to step up when I need him, and it has taught my kids some important lessons in responsibility and empathy that they would have had a hard time learning through other means.   Having a chronic illness makes priorities crystal clear, and really helps you focus your energy on the things that are really important to you.  And I am infinitely grateful that I am the one who has to deal with the illness instead of having to watch someone I love go through it.  I truly think it would be much harder to be the mom of a sick kid or the wife of a sick husband than to be the patient myself.

And I know this won't last forever.  Here toward the end of week 3 with no real "end game" in sight, it kind of seems like it's dragging on far too long, but I know I'll get healthy again.  Prior to the flare that began in April, I had had such a good stretch of healthy months that I was 15 pounds heavier than I had ever been in my adult life.  I had been working out and gaining muscle, plus my body was finally able to absorb my food and nurture my body with it.  Now I understand why my doctor advised me, "If you ever find yourself gaining a few extra pounds, just let that happen."  I think I'm down 12 pounds from the past 3 weeks of not being active (lost muscle), and limiting what I am eating (less in means less out, which means less stress on the area that needs to heal.)

If you're the praying sort, I'm always happy to be included.  If you're the "thinking of you" sort, I appreciate that, too.  I believe in positive thinking and knowing that people are rooting for you is really helpful in a situation like this.

So that's why things have gone dark around here lately.  I promise to be back as soon as I possibly can, and I hope you will stick around.  I promise much more good stuff to come!  If you feel like leaving a comment, I'd love suggestions for two things: 1) easy but fun knitting patterns - something I might be able to do even when I can barely read, 2) book suggestions, especially comedy books.  I've been using books by David Sedaris, Mindy Kaling and Jim Gaffigan to get me through the tough spots and I could use another book in this vein because I just finished Gaffigan's book this morning.  They are very easy reads and the comedy really helps me take my mind off the pain and off of reality when I need to escape.


  1. Nicole, I have never met you but I feel like I know you as a fellow creative person and my daughter's friend. I am so very, very sorry to hear of your troubles, and I will hold you in positive thought and in prayers for your healing. Take care, you are a wonderful artist and I wish you the very best. Mary Ann

  2. Thanks for the well-wishes and prayers, Mary Ann. Even though we haven't met, the fact that I adore your daughter tells me that you're a very special lady as well. Thanks so much for the note; it was a nice lift to my spirit!

  3. I, myself, do not suffer from any chronic illnesses but I have many family members that do. You'll be in my thoughts for a speedy recovery and hopefully a very long period of health following. Your patterns are amazing and I can't imagine how hard it must be to not be able to have that outlet right now. Soon enough you will feel up to releasing your pattern, and we'll all be here waiting eagerly to see it and to applaud your creativity. I wish you all the best and can't wait to see what you have in store for us in the future!

  4. Thanks so much, Ms C (or is it Miss E?) for your kind message! You've lifted my spirits and I appreciate all the healing vibes coming my way. You're right - soon I WILL feel up to finishing the final edits on this pattern and sending it out into the wild. Hopefully it will be even sooner than I think! :)

  5. Will be thinking of you and hoping for better days to come soon.

  6. Thanks, Penny. I appreciate your well-wishes!