The joys of chronic illness

How it’s been going:

As most of you know, I collect autoimmune diseases. I’ve been diagnosed with seronegative rheumatoid arthritis, psoriatic arthritis, and ulcerative colitis. Who knows which of those diagnoses is accurate, but the upshot is that my immune system likes to run amok and damage healthy tissues. The result is pain, stiff swollen joints, diarrhea, bloody stools, and gobs of fatigue.

A few months ago, after regularly taking my immunosuppressant Imuran for 3 whole months straight, I felt amazeballs. I was thinking and saying to my husband that I should stop pursuing my disability claim and see if I can find work I can do from home because I felt like I could earn more than the limits provided by disability (if I ever get it, which is doubtful).

But good things don’t last when you have a chronic illness or two or three. This is my current sitch:

Things started to go downhill when I had to stop taking my immunosuppressant because of a medical procedure that I had to have. I started having a lot of bleeding that didn’t fit with my regular period schedule. Despite being in perimenopause, it seemed excessive, so I went to my gynecologist. She did an ultrasound, and informed me that I had a growth on my cervix. It needed to come off. So, I contacted my rheumatologist for instructions, and she told me to stop taking my immunosuppressant for two weeks before and two weeks after the medical procedure.

I did as I was told. I stopped taking my immunosuppressant.

Two weeks after I had stopped taking the drug, I was starting to feel a bit iffy. I went through the medical procedure, which went just fine. Thankfully, the growth turned out to be benign. By the time I was able to take my immunosuppressant again I was feeling truly rotten, and was delighted to be able to start taking it again.

Two days after that, I came down with a nasty cold. Sprout brought it home, because at age 5 she is my beloved diminutive vector. She sniffled for one day. I got gut punched with the thing.

It is now two weeks after I was supposed to start taking the immunosuppressant again and have been unable to. The cough from this cold is lingering, and I cannot start my immunosuppressant until all of the symptoms go away or else I will never get better. I know this both from instructions from my rheumatologist and from experience.

Yesterday I dragged my sorry self to the rheumatology office and bemoaned my situation to the Nurse Practitioner, whom I absolutely adore. She gave me a steroid injection in my backside to try to help bridge the gap between now and when my immunosuppressant actually fully kicks in, which should be approximately 3 more months. The injection has already reduced my joint pain and inflammation (I can get my wedding ring on today!) but hasn’t touched my extreme fatigue.

I’ll take what I can get.

The Nurse Practitioner also ran my blood work. Oh, look! Inflammation markers are up! There’s a reason I feel like poo!

Anywho, the upshot is now I am very glad I didn’t withdraw my disability claim. During my good spells I could totally work, for several weeks and sometimes several months together. But during my bad spells I spend my time close to home and making out with my couches and my bed, for weeks and sometimes months together.

God bless my children, who are used to a mommy who is fatigued and can’t quite do everything. The house is a mess and my husband has stepped up cleaning efforts like a champ. My 9-year-old Sunny has been using my fatigue as an excuse to hone her cooking skills, and I kid you not, the child made PERFECT gluten free breaded chicken breast entirely and utterly on her own the other day. She was so proud and so was I! I’m thinking of getting her a cooking apron and an easy bake oven for her birthday this year though by then she may have already graduated to using the actual oven…

Sprout likes to watch her iPad while sitting on my bent knees. It’s her way of getting Mommy attention and closeness while letting me rest.

So, we adapt. We’ve been here before and will be here again. Everyone is fed, the house avoids infestation and open grossness even if it’s messier. Everyone gets to bed and school on time and has clean clothes. Who cares if it takes us 2 weeks to fold all the laundry. At least it’s done.

I’m glad we got our vacation in when we did. I wasn’t feeling great for it but managed to get through it okay. The kids had an absolute blast. Now it’s almost State Fair time. I’ve promised three children I’d take them, and dammit, I will do so. I’ll just have to sleep for a day or two between visits.

My foods revolution

Another thing that is helping me is that I’ve started seeing a dietician who specializes in folks with eating disorders, and who believes in healthy at any size. The initial evaluation was done by an amazeballs woman down in Elmira NY. She did a metabolic and body composition analysis on me and gave me some basic parameters. Now I’m working with a dietician in Liverpool (much closer to me) who is helping me hone my diet.

The brief upshot of all their advice? More protein! Apparently it’s super easy for perimenopausal women to burn muscle instead of fat. The key to having an even blood sugar and enough carbohydrates and protein for my various medications to work properly is increasing protein. I’ve resorted to a protein shake most days because I get sick of my protein options, but am eating a lot more yogurt and eggs and nuts than I had been before and am feeling a bit less up and down throughout my day. I’m also maintaining muscle mass, which is huge. So a diet of proteins and veggies for the win! Anything that makes me feel better = good in my book.