Sunday, July 17, 2011

Life as a 'sick' Mommy

For as long as I can remember I wanted to be a mom. I baby sat all the time as a teen, worked as a preschool teacher, worked in a children's resale shop... all because I love kids.

In April 2002 Jordan was born. I was a Mommy. If you are a parent, you know it's not an easy job. Being a sick parents makes it even harder. For as long as I can remember I've had pain and was easily fatigued. It was just something I learned to deal with. I remember being exhausted when J was a baby but I figured that was normal. The pain in my pelvic area was chalked up to my c-section. So, I just went on with life.

In September 2004 Matthew was born. Shortly after that Jordan started having her issues. Between having a newborn/infant and a toddler who was in pain, I kinda forgot about my pain. Right before Matthew turned a year things changed. I remember getting awful headaches, worse than what I was having before. My pelvic pain became almost unbearable. I was bouncing from doc to doc trying to find an answer. Being brushed off and told I was fine, that I needed to see a shrink or given different anti depressants.

In October 2008 I was given the name of a doc who would do a hysterectomy (at the age of 34) seeing how I thought 95% of my pain was caused by my uterus. Turns out I was right, kinda. I had adenomyosis, and my right ovary was covered with cysts. About a year later I found out that I also had interstitial cystitis. The causes of my pelvic pain was solved but the rest of me hurt too. More than I had originally thought.

After years of chronic pain I found a doc who sent me to a rheumatologist. Brilliant idea seeing how I have a daughter, a sister and a first cousin all with autoimmune diseases. At my first appointment with the rheumy I started meds. We didn't know what we were dealing with but he knew it was an autoimmune connective tissue disease. Turns out I have a few...

I was officially diagnosed with lupus, sero negative RA, fibromyalgia, Raynaud's, antiphospholipid syndrome and a few others. All of those are autoimmune. My immune system is jacked up and instead of attacking bacteria and the bad stuff, it's attacking healthy tissue. Which causes pain.

Being a mom with all these diseases is hard. I'm taking several medications, including low dose chemotherapy, and they leave me tired. As if the diseases themselves aren't enough to deal with there are side effects from every med I take. Because most days I feel like poop, it leaves me feeling like a bad mom. I can't be in the sun, I can't handle the heat, too much walking/standing hurts. So yeah, our summer has pretty much sucked.

I started Remicade a month ago and I've had 2 infusions. I'd like to think it's working but I really don't know. I've had a lot of pain the last 2 weeks. So bad that I almost had Rick take me to the ER in the middle of the night. Problem is, even if I went, there isn't anything they can do for me. I already have pain meds, muscle relaxers and steroids at home. I don't want to be looked at as a drug seeker because I'm not. I just want to manage my pain better so I can do stuff with my kids.

I didn't ask to be sick and I don't like being sick. I don't like my house being a mess all the time because I can't find the energy to clean on a day where my pain is minimal. For the last month my pain has been about 6. 8 or 9 a few times and a 4 on a GOOD day. My kids saw me sobbing in the shower because I hurt so bad and I couldn't "suck it up" anymore. I had taken all the pain meds that I safely could, yet thought about taking more in hopes that it would ease the pain enough so I could sleep. I cried myself to sleep with Rick by my side only to wake up less than 60 minutes later crying again.

And I'm not alone. There are millions of women just like me, trying to be a good mom and wife that live in constant pain. Don't forget, I have Jordan who has her own issues. We run from appointment to appointment and it's exhausting. I have a hard time knowing that she will probably be facing the same issues I do someday. Of course, I hope I'm wrong but reality is she has a chronic autoimmune disease too. It can flare just as bad as mine has at any time. I just pray it doesn't.


Sunshine said...

Thank you so much for sharing your story with the world. I am so sorry for your pain. Being a mom is tough enough, being sick on top of it just plain unfair.

Bethany said...

Thank you for expressing not only for yourself but for others of us who have been 'sick mommies'... my boys are grown now, 26 & 23, the younger one understands and stands by me, the older one has yet to understand how much I wanted to do but was unable. Your story really hit home even if a different scenario, still so similar. We didn't ask for the pain, but we're blessed to have children with it, as hard as it is for all concerned.

Lauren Elyse said...

I hate how much this can hurt and how hard it can be to find the balance.

I am proud for how well you handle all of this and how well J does too. You're both inspirational.

Emily said...

I found this post the other day when doing a search on google for adenomyosis and autoimmune. My story is almost identical to yours. I started having a few symptoms in my teen years but nothing major. Everything got much worse after my two sons were born. Both pregnancies were horrible and after my second son was born with a severely swollen lymph node that never went away I decided to get my tubes tied. I knew I shouldn't be having any more children. Unfortunately, my second son was diagnosed with leukemia when he was 3. So, like you, I pushed all of my problems to the side to care for him. Four years later I was in so much agony I couldn't ignore it anymore. The pain I used to have occassionally became monthly, then weekly, then it was an ongoing daily and constant pain. I felt like I was dying. It was so bad I couldn't drive, I couldn't breathe sometimes and was hyperventilating. By the time I sucked it up and went to an OB/GYN I was expecting to hear that I had cancer. Fortunately they could tell from the ultrasound that I had adenomyosis and multiple cysts on my right ovary. I got a hysterectomy. I thought that would be the end of it but it has been downhill from there. A few months later I started getting infections that were erupting from my parotid glands into my mouth. I ended up being diagnosed with pancreatitis a few months after that and eventually visited a rheumatologist who decided I most likely have sero-negative sjogren's and lupus. She decided to take a wait and see approach. A couple months later I had (another) bout of trigeminal neuralgia and after a medrol dose pack realized I have some pretty severe inflammation in my upper respiratory tract. Right now they are trying to determine why my turbinates are so swollen. I haven't even mentioned that the inside of my throat feels horrible. Oh yeah, my white cell count and pneumoccocal titres are low now. I got a pneumovax shot four weeks ago and go back this afternoon to see if, miraculously, it has brought my counts back up. Doc said there was a 50/50 chance. Anyway, it is good to read others stories that are similar as it gives me hope that I am moving in the right direction for getting this under control.

Emily said...

I wanted to let your readers know, in case it helps them... that I was diagnosed with Limited Wegener's Granulomatosis in July. I am now being treated with low-dose chemo.

Anonymous said...

Thank you for sharing your story. I also found your post by Googling "adenomyosis" and "autoimmune". I was recently diagnosed with Hashimoto's thryoiditis. After having trouble conceiving (I was recently married and my husband and I have been trying for about a year) I learned I also had adenomyosis.

Since discovering and treating my Hashimoto's I've been more conscious about my diet. I've been following the "paleo" diet (although not to the letter) and have found that eliminating grains, legumes (beans, peanuts, soy) and most dairy from my diet has helped me feel better.

The thinking behind this diet is that it lowers exposure to foods that can cause chronic low-grade inflammation, which is believed to be a trigger of autoimmune illnesses.

I share this in the hopes that it may help you and/or your readers. Thank you for sharing your story -- sending you my heartfelt best wishes for a speedy and full recovery for you and your daughter.